Carole Blueweiss is a Doctor of Physical Therapy, Geriatric Clinical Specialist, and Yoga Teacher. She treats adults and children, and has received degrees from Tufts, Boston University and Northeastern University.  She is a practitioner of the Feldenkrais Method® and the Anat Baniel Method® NeuroMovement®.

Carole hosts a podcast titled Wisdom Shared and is a posture coach and documentary photographer on a mission to help people stay tall.

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Meet the experts on the frontlines: the parents of children with special or unique needs.

What do they wish they knew then that they know now? These parents share their insights and experiences with traditional and non-traditional professionals, their advice, and their wisdom. The lessons learned are valuable for all parents, health care workers, and educators.

SHOW NOTES

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Episode Notes

EPISODE SUMMARY

Lisa Greer is a mother of five, a former executive and business owner, a convener of charitable events, and the author of Philanthropy Revolution.  We discuss her childrens’ diagnoses with cancer and adolescent-onset epilepsy and how that affected the whole family. Lisa explains how transparency fosters trust, something that applies to the worlds of charitable giving, healthcare, and parenting.  There are so many impactful takeaways from this wide-ranging conversation with Lisa, as the wisdom she has gained in her variety of roles interconnect in sometimes surprising ways. 

For the visually-minded who prefer to listen and read or for those who need closed captioning, watch the transcript video here: https://youtu.be/KE1KrICHEPM

ABOUT LISA GREER

FROM THIS EPISODE

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Transcript

[00:00:00] Lisa Greer: It’s the memory of the pain. It’s the memory of being pulled out of school. And in my daughter’s case, it was having a kid that everybody was talking about and trying to figure out how do I protect her from that? And is that good or bad to be known as the kid with cancer? 

[00:00:19] Carole Blueweiss: Welcome to Wisdom Shared, where parents and children are the experts and where connection inspires change. I am your host, Carole Blueweiss. And today I have as my special guest Lisa Greer, a mother of five, a former studio executive at NBC and Universal Studios, and later the owner of an egg donor company that helped women who were having difficulty with pregnancy. Lisa sold that company when she suddenly became a member of the 1%, which allowed her to quit her day job.

[00:00:51] To learn more about Lisa’s story, you’ll have to read her bestselling book, Philanthropy Revolution: How to Inspire Donors, Build Relationships, and Make a Difference. While reading Lisa’s book, I was struck by how the advice in her book on how to best approach donors and ask them for money seem to mimic her approach to parenting and even speaking with healthcare practitioners. 

[00:01:20] For example, she writes about the importance of curiosity, listening aggressively, and being honest. When her 10-year-old daughter was diagnosed with cancer in her sinus and then her teenage son with epilepsy, a seizure disorder, Lisa found herself in new territory where she needed to use her curiosity and listening skills to understand all the choices and to understand and empathize with her children.

[00:01:52] She had some help from her husband, Joshua Greer, who as a child he was diagnosed with a chronic condition called Crohn’s Disease, which causes inflammation of the digestive tract. His familiarity with the medical world helped Lisa feel less intimidated and more proactive when it came to speaking to the doctors and asking all her questions, but in spite of this familiarity, nothing prepared her for the multitude of challenges that followed her kids’ diagnoses.

[00:02:22] In this episode of Wisdom Shared, we will hear Lisa’s perspective on parenting and communicating with medical staff and her perspective on giving and receiving. We will hear about her insights, her struggles, her questions, her breakthroughs, and her advocacy. Let’s now listen to Lisa and her wisdom.

[00:02:46] Do you have a childhood memory that sticks with you today? 

[00:02:49] Lisa Greer: My biggest childhood memory is my father saying to me when I was about 13 years old in front of a group of people. My parents were into events, like cocktail parties, and he looked at me and he said, “oh, it’s too bad that you aren’t a boy. You would’ve made a great attorney.”

[00:03:05] He was an attorney. I remember it clear as day, it’s one of those things where I think that shaped a lot of what I do. I’m a fixer, which could be a good thing or a bad thing if overdone, which I’ve probably done a little bit of both, but I can’t help myself. When I see that there is something in the world that isn’t being done, in my opinion, correctly or isn’t being done in the best way it could be done, I have tools to understand why it’s not right. Then I just go to fixing it, whether it be dealing with my daughter’s illness or dealing with my husband’s chronic illness or dealing with seeing that philanthropy in terms of charitable giving, in my opinion, is not being done in a productive way. 

[00:03:51] Carole Blueweiss: And what does Lisa do when she sees that the world of philanthropy isn’t quite working as it should or it could? She writes a book where she describes how fundraisers tend to ask potential donors for money and how maybe they could be rethinking their strategy. 

[00:04:06] Lisa Greer: It’s not as successful as it could be and a lot of organizations could fail if the way that it’s being done isn’t changed. So that’s why I wrote the book. It’s a blessing and a curse because I do see more things that need to be fixed than I could possibly fix.

[00:04:21] Carole Blueweiss: In her book, Philanthropy Revolution, Lisa explains why she thinks an intervention into the fundraiser community is needed. Her drive to fix what’s not right led her to focus on the non-profit sector, as she says, to save giving. Lisa also looks inward to help herself change in new ways. She learns from Stacey Barrows, a doctor of physical therapy who melds the Feldenkrais Method, Pilates, and her smart roller practice.

[00:04:52] I asked Lisa about her experience with the Feldenkrais Method, which you can find more about in the show notes. The irony here is that the method is about learning to try less hard and not to think about fixing, but to become more aware and move with less effort. So I was curious what Lisa had to say about that.

[00:05:11] I know from one of the ideas is that you’re trying not so much to fix. You’re trying more to do something different. So I wonder if your experience with the Feldenkrais Method is helping you in any way, or making you more aware of alternative ways to fix.

[00:05:29] Lisa Greer: Feldenkrais erased the panicking where every little thing that was wrong, oh my God, I’ve gotta fix that right now. My elbow hurts. I have to go to a arm doctor. I have to stop and take a breath and say, no. My body knows what it needs to do and I need to practice some of the Feldenkrais things I’ve learned that are very slow and very quiet and low key, and that things then work out. Maybe that’s why it’s working for me because it’s so diametrically opposed to how I do everything else.

[00:05:59] Carole Blueweiss: That’s when it’s usually most helpful is when you’re introduced to something that’s not like you usually think. 

[00:06:06] Lisa Greer: I think that’s it. I also do reflexology and same kind of thing, go almost into a trance. So, if I’m trying to write an article, which I do a lot of writing, I stop worrying, and then I’m able to think creatively.

[00:06:22] Carole Blueweiss: You said you have five children. 

[00:06:25] Lisa Greer: Right. The oldest was just 36, and then I have 16-year-old twins and two children in between. 

[00:06:32] Carole Blueweiss: One of your children had cancer. Do I understand that right? 

[00:06:35] Lisa Greer: Yeah, that’s right. My middle daughter was diagnosed with an extremely rare tumor in her sinus when she was 10 years old, and she was asymptomatic. We found it because she was getting braces early. She matured a little bit faster than other kids. They give braces to you earlier now anyway. And she went to go have those x-rays and they said they found something that they just thought was an unerupted baby tooth or a cyst, and not to worry. So I didn’t, and found out very soon after that what they thought was a cyst was actually the edge of a very large tumor that was in her sinus.

[00:07:10] Carole Blueweiss: And how old was she? 

[00:07:11] Lisa Greer: Ten. 

[00:07:12] Carole Blueweiss: 10 years old. From there, there was a journey of diagnosing and healing, and I imagine a lot of things going in a different direction. 

[00:07:24] Lisa Greer: Yeah, yeah. Dealing with a child who has no symptoms and has just been told that they have cancer was difficult. I did it in a public place. We did it. We took her out to a deli. I felt it would be less hysterical that way. She wanted to know if she was gonna die. And then there were big surgeries, then there were smaller surgeries. Thankfully, she didn’t have to have chemo or radiation because her type of cancer was a cystic type where I guess it could have metastasized, but it was really contained within a certain area.

[00:07:52] She has had reconstructive surgery since then, and it’s an ongoing thing. Right now, she doesn’t have teeth in her upper jaw on one side, and so we’ve done a variety of different types of reconstructive processes to try and solve some of that. We haven’t found a solution yet that works, and so we will continue to keep looking.

[00:08:13] But at the moment, she’s content. Knock on wood. She’s fine. She’s free of all of that. She’s 27. You don’t forget things like that. So she’s got a physical piece that stays with her that you can see if she smiles really broadly. She doesn’t have pain typically, but there’s related issues like with her sinuses and things that seem to come up.

[00:08:32] And then as a parent, I don’t think you ever, ever outgrow or completely leave the idea that every stomach ache could be something else because it was such a shock when this happened. 

[00:08:42] Carole Blueweiss: What advice would you have for parents that first find out of something like this? What worked best with you and your daughter in terms of coping with this traumatic news?

[00:08:54] Lisa Greer: I do think talking to other people is helpful. I didn’t really have anyone else to talk to, so I made it up as I went along. Dealing with other children was an issue. My other kids were totally freaked out. I had some friends that I didn’t talk to during that whole time because they were freaked out by the idea of kid had cancer.

[00:09:11] There were issues at school about people marking her as the kid with cancer, things like that. But I think talking to other people who’ve been through some of it is extremely helpful. And right now my daughter is part of the group at an organization called myFace based at right now at NYU in New York.

[00:09:29] And she, for the first time in the last year and a half, has been able to be part of a group of young adults who’ve had facial differences or facial issues, surgically or with disease, and who are able to talk to each other about what their lives are like and how they deal with stuff. And I think that’s extremely helpful.

[00:09:47] As a parent. I have to say, I felt totally alone. This is was my third child and I trusted that I was just gonna figure it out. Also, my husband was incredibly helpful because he had been diagnosed with a bad disease when he was a kid. So he was very familiar with hospitals and what different machines did and how that looked.

[00:10:07] And we also used the child life person at Children’s Hospital here, was phenomenal and explained things to us and I think that’s really important. People now who have kids who are in the hospital or even young adults, I try to offer them a lot of the advice, even if it’s unsolicited, that I know. Things like it’s okay, and in fact, you should ask for what you need. We had this one kid that I went to go visit who’d had a Crohn’s surgery, and I walked into the room to check on her. She and her mother were there, I think she was like 17. I said, how’s it going? And they said, fine, but she’s really cold. So I said, they have these wonderful warm blankets here and you can ask for those and, you know, just a minute, I’ll go get that for you.

[00:10:48] And they were so surprised that it was something you could do, that you could just ask and that it was something they had because they didn’t know, you know, and I said, and if you need more medication, it’s okay to ask. And these really highly intelligent, highly successful family, but they felt completely intimidated by this whole medical thing and by hospitals.

[00:11:08] And I find that that happens a lot. I used to be intimidated by math. My brain would just fuzz over whenever something math would happen until I got over it. And I think it’s the same here with hospitals and medical things, and some of that is maybe just loss of control. That’s part of the game, part of the whole picture.

[00:11:24] But you just feel very, very vulnerable and I think it makes some people freeze. And I would be happy if every hospital said, let us look in your database and find somebody who’s been through something similar that you could talk to. And for some reason, maybe it’s a HIPAA thing, I don’t know. But it feels like there should be something like that and some of the stuff we can get online, but you don’t really know who you’re talking to and that gets a little weird.

[00:11:47] And some doctors, if both parties agree, are willing to suggest that, find somebody that you can talk to who’s in a similar situation. It would’ve been nice. And I know for my daughter now, she’s very grateful that she has people to talk to even at this late date because this is something that she has to live with.

[00:12:04] Carole Blueweiss: I find that a lot of parents say that finally finding that support is huge. In this case, your daughter found her own support. Did you find support for yourself? 

[00:12:14] Lisa Greer: Yes and no. I became involved with our hospital over time when we first started giving. And through that, I became very involved with both working with trying to find solutions for Crohn’s disease, which was a gift that we gave to the hospital, but also in terms of things with, like with my daughter and other people who’ve had issues.

[00:12:35] I’m around doctors a lot now and I don’t feel intimidated by them, and they seem to like that, so we’re able to have conversations. I can have lunches with some of them. We can talk about some of these things, and it’s so much easier when you talk about it. When you don’t, it just tears you up and it’s hard enough going through this in general and then managing other children and managing work and managing friends and relatives and all of those kinds of things.

[00:12:57] It would’ve been way worse if my husband had not been so familiar with hospitals. I just had this conversation with someone the other day whose kid at a similar age had to go through a back surgery and there’s a period of time where they’re in a not really waking state like that post-surgery and sometimes for a few days, and both of us were saying that our kids changed after that surgery and we don’t know if it’s something they heard or some vision they had or dream or something, I don’t know.

[00:13:26] But both of our kids changed in different ways during that time, like woke up on the other end with different interests. In my case, my daughter got super into creative writing and she had never been interested in that before. I’ve heard kids all of a sudden be interested in sports or whatever their favorite thing is, they’re just not interested in anymore.

[00:13:46] So that’s another interesting thing that happens. But I have to say that as I go through life, I keep meeting people who’ve had these kinds of traumatic situations with their kids and medical stuff. Even with themselves. It’s not like a thing that is buried in the past. It stays with you. It’s the memory of the pain.

[00:14:04] It’s the memory of being pulled out of school. And in my daughter’s case, it was having a kid that everybody was talking about and trying to figure out how do I protect her from that? And is that good or bad to be known as the kid with cancer? 

[00:14:16] Carole Blueweiss: Did she look different when she went back to school after the surgery?

[00:14:19] Lisa Greer: Well, she couldn’t talk. She could make sounds, but until she got the right appliance for her mouth, which they had to wait until swelling went down. And luckily she had a surgery during the summer, so a lot of that happened during the summer and she was home and wasn’t a big issue. But we developed a little bit of a secret odd language between the two of us so that we could talk about things because she just couldn’t talk normally.

[00:14:42] She could write down things, but she couldn’t talk. And eventually after a few months, she was able to get this appliance in her mouth where she was able to speak. And yeah, it was difficult. She looked a little bit, I would, I don’t think dramatically different, but a little bit, but certainly she had to leave school, including college.

[00:15:01] There was always that issue of, can you go to, we live in Los Angeles, so can you go to New York for school? What if something happens? Are there doctors in these various places? And she’s a world traveler and a food writer. I had to really weigh in my head how worried am I? You know, what if something happens?

[00:15:17] And what if she calls me with a stomach ache, or she calls and says she has a headache and she thinks that it might be something coming back? That was always there. So as a parent, you weigh that and say, look, what’s a realistic concern and what’s good for my child’s growth? And I think she’s a very high functioning together kid now. 

[00:15:35] There’s still, most people don’t notice that there’s anything wrong, but it’s because she’s gotten really good at looking at you at the right side and that kind of thing. As she’s gotten more involved with this organization and this support group, I noticed that she doesn’t worry as much about what side she has a picture taken on anymore because she’s seeing other kids with issues.

[00:15:53] Carole Blueweiss: I looked at myFace, which is the organization you were speaking about, which looks like an amazing organization, multifaceted, and I saw that they have a lot of articles that were published about that movie Wonder. 

[00:16:07] Lisa Greer: Right. 

[00:16:07] Carole Blueweiss: I wondered if your daughter was experiencing any of that, because I did see the movie and read the book, and that’s probably what most of us have a vision of in terms of facial differences. But I am, it sounds like in your daughter’s case, it wasn’t so much about the physical in terms of going back to school or being with her friends again afterwards. 

[00:16:31] Lisa Greer: There’s a part of this that kind of skipped over that piece because we moved during that summer, we were moving anyway. My husband and I had actually just got married and we found out she had cancer the day we came home from our honeymoon.

[00:16:44] So we were getting ready to move to a different town and a different school. It was coincidental, but because of that, she went from being the cancer kid that people had known since kindergarten, because I think she was like in fifth grade then or fourth grade, to the deaf kid in this new town. And then once she started talking, that kind of just went away.

[00:17:03] But in terms of friends, there weren’t a whole lot of friends that she continued with in the new school. She made new friends. So I have to say there wasn’t a lot of continuity there. I think there was kind of a hard stop almost. 

[00:17:17] Carole Blueweiss: And then she made new friends in the new school. 

[00:17:19] Lisa Greer: Right, exactly. 

[00:17:21] Carole Blueweiss: Is there anything that you know now that you wish you knew then?

[00:17:26] Lisa Greer: There still aren’t a lot of people who have what she has, but it didn’t occur to me that, oh, there’s other kinds of facial things people have and other kids who go through surgery and cancers, that there are support things. At that point, there weren’t the number of online resources that there are now at all.

[00:17:40] I also think those can be good and bad. They can also make you crazy and you don’t know if the people that you’re talking to are similar minded, or if they’re people who are just, you know, ranting and you don’t know if they’re telling the truth and that kind of thing. I might look a little harder for help, for resources, and who knows, maybe that’s the time with Feldenkrais, that I look to help other people. I wasn’t the person who looked for help from other resources. 

[00:18:03] I just educated myself, learned how hospitals work, learned about medicine, learned what they were talking about, learned how to describe this disease, learned what kind of blood pressure cuffs and what kind of tools she needed when she went to CAT scans, if she was going to a hospital that didn’t have child-sized stuff.

[00:18:20] So it was, I was learning every minute of every day. I was also very conscious about my other kids being okay, and luckily they were older. So it was possibly a little bit easier for them, but they were also totally freaked out by what was going on. I think I came to the new school with her new teachers and the new town with a new outlook.

[00:18:42] I certainly didn’t feel like there were any resources available to me in terms of how I felt. You have to keep the worry under control, but you also want to feel it because it’s real. So, it’s an interesting dichotomy. 

[00:18:56] Carole Blueweiss: So the way that you found to take care of yourself. 

[00:18:58] Lisa Greer: And, by the way, I couldn’t read a lot about this because it was, there were like nine people in the country or the world or something who got it every year. They just said, just don’t even bother looking. Because even if I was to look on the internet today, there still wouldn’t be much. 

[00:19:10] Carole Blueweiss: You were starting to say that there’s something that you would love parents to know. 

[00:19:14] Lisa Greer: Yeah. We went to this therapist and I had spent, I also was mostly supporting, I was completely supporting my family at that point, and I had three kids and I was the breadwinner, so I had to deal with that kind of pressure.

[00:19:31] But having said that, I was still at every single appointment with her. I was the only person who could talk, who would understand her at some points because she was unable to talk clearly. But a couple years later we went to therapy together and she told the therapist that I had been absent during that whole time and that her father had been, her father and her stepfather had been absent as well, which couldn’t have been further from the truth.

[00:19:52] But that was really painful and it was really hard for both my husband and I for a couple of years. And she just kept saying, I don’t remember you doing anything. I don’t, I just don’t remember you helping me at all. And I was like, I don’t understand how that’s possible for you to say that and was pretty angry.

[00:20:09] And then you start thinking like, you know, have I been gaslit, I guess is what they would call it today. As she got older, it’s just all got back into place. It seemed like it was some sort of a teenage thing. She does remember a little bit saying those things. But she doesn’t really remember why she said them.

[00:20:23] She’s like, of course you guys were there every minute. Of course you helped me. Of course you were next to me. But that was like a sock in the stomach for a while. It was really hard and trying to figure out how did she see it. This was after the major surgeries were over. 

[00:20:36] Carole Blueweiss: Did the therapist hear her say that?

[00:20:39] Lisa Greer: Yeah, and so therapist didn’t know if that’s what happened or not. I mean, my child was saying one thing and I was saying another, and I felt really weird to have to defend myself with that and, but it was just some trauma piece, traumatic way of dealing with trauma that she had come up with in her growing brain when she was, whatever it was, 12 or 13 or 14 years old.

[00:21:02] Carole Blueweiss: In my little experience with life, I know that kids like to direct their anger no matter what at their parents. Right? 

[00:21:08] Lisa Greer: Right. But then when you’ve been through this kind of thing and feel beaten up and that you’ve come out of it okay and your kid’s healthy and you’re, you managed to keep your family together and be able to support your family, and then being told that is just like, wow, how did that happen? So that was a very difficult time. 

[00:21:26] Carole Blueweiss: Yeah. I imagine, like that’s the last thing you ever expected to hear. 

[00:21:30] Lisa Greer: Right. And I wanted to say that to your listeners because if anybody else, I’m sure it’s not an isolated case. There are weird things that happen as kids grow up and they deal with things differently.

[00:21:40] One of my kids ran screaming out of the hospital because she couldn’t stand seeing her sister like that. And she’s totally cool with everything medical now and she doesn’t really know why she did it, but she was a teenager and that’s what she did. So it’s fascinating seeing how everybody responded in their own way. And a lot of it was based on their own background and their age. 

[00:22:00] Carole Blueweiss: Yeah. Yeah. And it affects different people differently. Right? So, just knowing that I think is helpful. There’s no right way or wrong way. 

[00:22:11] Lisa Greer: Yeah. 

[00:22:11] Carole Blueweiss: I wanted to ask you about a quote that you actually started your book with. It’s a quote by Christopher Penn. “Transparency is the currency of trust.” Why did you choose that? 

[00:22:22] Lisa Greer: One of the biggest issues in the world of philanthropy and in giving, charitable fundraising, is trust. And there’s different organizations that do a trust report periodically. Every year, every two years. And the level of trust, I think this is an issue in our country as well, but related to philanthropy, that seems to be a big issue for givers. 

[00:22:45] People who want to give because they’re afraid. And the biggest question I get from prospective donors is, how do I know if this organization is legit? They always say it the same way. How do I know if it’s legit? Either something bad will be done with it or the person will just not do what they were supposed to do.

[00:23:00] And so what I was trying to convey by putting the quote there is that a lot of that has to do with things being transparent, and if there’s transparency, and if you’re donors, and if you know both the good, the bad, the ugly, all of that about an organization. I mean, you don’t have to tell them every little teeny thing, but generally how you’re doing, you’re actually going to develop more trust.

[00:23:22] For example, I was just writing a piece about this, that if you go and someone’s asking you for money, and you say, tell me how your organization’s doing. And they say everything’s great. We’re wonderful. We just keep growing and growing. Everything’s wonderful. And say, okay, but where are the, what we sometimes call pain points, you know, where are the areas that are an issue?

[00:23:40] And they say, oh, you know, really nothing. We’re doing just great. Because they’re afraid that if you say something bad, then you’re not gonna give. And it’s actually completely the opposite because if someone tells me that everything’s peachy keen and fine, I think they’re lying because nobody has everything that’s peachy keen and fine. There’s always something that can be done better. 

[00:23:59] Most fundraisers do not practice their job in that way. They’re more inclined to, and I think they’re probably told by the organizations, don’t ever say anything negative, but if someone says to me, you know, all this is going great, but we have this one issue that’s really tough, that we’re working on, A, I’m gonna trust them a million times more, and B, I’m gonna ask how I can help them.

[00:24:21] And so they don’t even have to say, I need money, because it’s gonna be clear they need money because they’ve got this problem or they need a referral or resource. So that is a very basic change that I’m trying to make in that world, and I think it will make a world of difference as people start realizing that makes a whole lot more sense.

[00:24:42] Carole Blueweiss: Hmm. That’s really interesting. One reason I ask that question is because me being in healthcare, I found that quote to be very transferable to that field as well. So I wonder, in your experience with transparency in your medical team, how do you decipher that in terms of what you experienced, good and bad?

[00:25:00] Lisa Greer: Yeah. I do think there’s a lot that happens in medicine. With my daughter’s situation, I feel like they were pretty honest with us. There were some things that some of the doctors told us that they were certain would go a certain way and they didn’t. And I think that’s a medical profession thing. They want to instill confidence in you so that you do trust them.

[00:25:21] And I did. But years later, we’ve had other doctors and that’s also a thing, is that we also learn that doctors don’t want to say anything bad about another doctor, but they do sometimes say, oh, well, you know, you really should have never had that particular surgery. And it makes you feel pretty crappy at that point.

[00:25:37] I always just think it’s hindsight is 20/20 and people have different opinions. And one of the neat things about medicine is that, especially surgical stuff, is that new technology comes out all the time, so things that seem obvious that you could do a certain way today, you might not have been able to do at all 10 years ago.

[00:25:52] So that’s how I rationalize that. I never felt belittled by the doctors. I did feel like they had some blind spots, especially having a young teenager. There’s a lot of stuff in the medical world that is catering to kids and there’s a lot of things that cater to adults, but there’s not a lot that caters to teenagers, that’s really in between.

[00:26:14] So I had to take my 15-year-old now to a doctor’s appointment a few days ago, and she had to have some type of test and it was at the hospital clinical kind of thing. I wanted her to go to a big person doctor and they said, no, she’s 15. You have to wait till you’re 18. So I said, okay, fine. The only other option was a pediatric doctor, so we went the pediatric doctor. He was great.

[00:26:35] He was very respectful and wonderful. But the room was clearly designed for a 3-year-old, and so we just laughed at it. But it was like you have one or the other. And that’s pretty striking to me that there’s plenty of teenagers or people, let’s say between 10 and 18 and 10 and 17, and they’re just caught in the middle.

[00:26:53] And when my daughter got out of a second big surgery, she was 15 at that point. I remember at the doctor had give me a couple different choices of hospitals, and I chose the one that had a new children’s hospital within a bigger hospital because they evidently had desktop computers and that kind of thing, and a lot of tech stuff that the kids could use while they were recovering in the hospital, could go in their wheelchair, whatever.

[00:27:12] And we were in recovery and I said, oh, we’re gonna go back. And I, so a few days before, I showed my daughter all the neat things online that this part had and that she was gonna go to this new pediatric thing and they had all this stuff for teenagers. And when we were in recovery, she says, oh, we have to wait a little longer because we’re waiting for a room.

[00:27:28] I said, oh, it’s okay. I said, but we’re so excited we get to go to this fabulous new room. And they said, oh no, you know, we really don’t have enough rooms for kids who are older, so you’ll have to go in the adult room, which was a completely different experience and horrible actually. So it was, that’s been made very clear to me over and over again, that kind of missing piece in medicine.

[00:27:50] Carole Blueweiss: You’d think there would be a specialty, right? Because definitely kids change. Like an adolescent specialty in medicine. 

[00:27:57] Lisa Greer: Right? I don’t know if that even exists. My son developed epilepsy a few years ago, and it’s adolescent-onset epilepsy, which is a little bit different than the kind that you have when you’re baby.

[00:28:06] And they have an emergency medicine they tell you about. He was, I think he was maybe 12 when he was diagnosed. And the emergency medicine is something that you basically stick this thing in their butt and push this button. And he’s a 12-year-old boy. He’s not very excited about that. And I take him to, and he had this particular thing, they’ve now changed the medicine and there’s this alternate that you just basically use like an inhaler in your nose.

[00:28:31] But on a field trip when he was 13 years old, he’s in middle school. And I said, oh, but if there’s an emergency, you need to do this thing and you actually have to pull down his pants. He looked at me like I was crazy. Like, I don’t know if we’re comfortable doing that. And, you know, no one talks about that was just the way it was. 

[00:28:49] Carole Blueweiss: Wow. That’s a whole nother challenge that you had as a mom having, is that one of the twins that? 

[00:28:54] Lisa Greer: Yes.

[00:28:57] Carole Blueweiss: And how have you managed that situation? My listeners might be curious if many of them maybe are dealing with, I know there’s lots of kinds of epilepsy, but the one in particular that you mentioned is developed later in life. How did you start to manage that diagnosis? 

[00:29:12] Lisa Greer: Yeah, it came from left field. We had no signs of it before, no anything. Kind of similar to my daughters as it just sort of happened one day and we were getting ready for a robotics competition and I didn’t know why he wasn’t ready to go in the morning, and I said to my daughter, his twin sister, I said, can you go check on him because it’s time to go. And she came down and she said he’s laying on the floor, he refuses to get up, he won’t talk, and he’s flopping around like a fish. And that’s, of course, my mind went immediately.

[00:29:42] I didn’t know a lot about epilepsy, but that part sounded familiar. And sure enough, he had had an epileptic seizure. He had fallen, tried to get out of bed, didn’t know what was happening, fell against his dresser, had a concussion, and it was pretty crazy. But, because of the past situations and my husband, I knew how to work with hospitals and obviously we called an ambulance and all that kind of thing.

[00:30:02] But, the biggest thing I learned there because lots and lots of people have epilepsy and this I’d also like to tell your listeners is that first of all, we had to go to different doctors before we found the right doctor. Plus we had to have somebody who would talk to him like an adolescent, like we just talked about.

[00:30:18] It took about two years and three different doctors for us to find the right person. He then developed migraines maybe a year after that, and all of a sudden one day he just said, I can’t see out of one of my eyes. And of course after having another kid with cancer, I was freaked out and turned out it was a migraine.

[00:30:33] And then there’s a connection between migraines and epilepsy, but there’s different doctors that handle those different parts that, so it’s not just a neurologist. And so I had to learn about all the different levels of neurologists and how that all worked. But it was, it…I think having the right doctor for that was really important.

[00:30:51] Now we do most of the interactions with the doctor online, which also for a teenager is much more comfortable. He didn’t want to talk at the beginning, but that’s been really awesome. And also there are lots of people with epilepsy, so it’s easier to find somebody to talk to about it, so that in that way it’s completely different than my daughter’s situation.

[00:31:09] The part that I found absolutely shocking, what I think a lot of us were told when we were younger, and you hear about epilepsy in the community, I’d always heard you put something in their mouth so they don’t bite their tongue. Evidently, that’s been proven to be dangerous to do, so you’re not supposed to put anything in their mouth.

[00:31:24] And I thought, oh, okay. That’s interesting. So sort of like, you know, when you have a baby and they say, put them on their stomach or put them on their side or whatever. So this is do not put anything in their mouth. Let them go through their thing. Just make sure they’re laying down so they won’t hit anything and hurt themself.

[00:31:38] So I said, okay, fine. And now I found out, what I didn’t know is that when I went to his teachers, when he was in, he was like seventh grade and he was going on a field trip. And I just assumed that all of the teachers would know that because they must know basic. I mean, I think they said one out of, I think it’s one out of every 20 kids or something has epilepsy, so there’s gotta be many others in the school.

[00:32:02] And it turned out they didn’t know that. And that really scared me that he was about to go on a field trip with different teachers. And I guess that was a faulty assumption on my part. So we had to very quickly put something together and make sure the teachers were trained. And yes, the district said they were supposed to be trained, but they weren’t.

[00:32:17] And it could have caused a real problem. So for anybody who’s listening who has a kid with epilepsy or knows somebody, I think it’s super, super important to make sure that teachers, and if they go on a trip and field trips and those kinds of things, that they’re aware of just the basics of how to protect a kid who has a seizure. And it’s not complicated, it’s just you need to either be told or you weren’t told. 

[00:32:39] Carole Blueweiss: I think what you’re saying is, and it’s interesting for me to hear that you don’t want to assume that teachers are trained in all kinds of things that maybe aren’t a typical condition. Because these days, especially with shortages of staff and training, they might not actually have it.

[00:32:56] Lisa Greer: Right. I’m allergic to shellfish. I would like to believe that every restaurant has an EpiPen or knows at least how to administer it. Or every clinic I would go to would, and I can’t assume that, and I assume that people would know basics about CPR and I realized, guess what? And I think you’re absolutely right, I think with the issues about staffing now, it’s become even more of a concern. And so if your kid has something, you just need to find out is that something that’s generally people understand at that place or they don’t. So it was, it’s pretty surprising to me. 

[00:33:31] Carole Blueweiss: What would you like to tell healthcare workers about? Sometimes they need to hear the honest truth. And you’re certainly an honest person. What do you think they could pay attention to more that maybe they’re not in your experience, and maybe that’s not a fair question. 

[00:33:45] Lisa Greer: Well, no, I think it’s funny. I was reading a story yesterday talking about people who had been patients and overheard medical staff at a hospital making fun of them, conversations they weren’t supposed to hear.

[00:33:56] Or, oh, that mom’s crazy, she’s overdoing it with her kid. Or, oh, that kid just keeps whining and it’s all fake, things like that. I had a hard time reading it myself and but then there were some other people talking, saying that this is not the norm and there’s always some bad eggs. I was able to kind of put that to bed in my mind, thinking that, but because you do, when you’re in a hospital with a kid, you do go all mama bear on them.

[00:34:19] That’s just what people do and I don’t care what they say. I don’t care what they think of me. I just need to protect my kid. But that doesn’t mean that you’re rude to people. I had one point where my daughter was coughing a whole lot of blood, sorry to be graphic. And the nurse came in and thought I was pain in the ass, and she basically threw a towel at me and a bucket and said, here, walked away.

[00:34:37] And I was like, wow. That’s incredible. So for the healthcare professionals out there, if you have patient interaction, don’t do that. I think it’s the same thing as what I do in fundraising. I tell people in fundraising, don’t think of this other person, the donor, as an alien, and that you’re somehow this other type of human, or you’re the human and they’re the alien, whatever.

[00:34:58] And that you can’t talk to each other because you’re so different. And I think it’s the same thing with the medical professionals. I think that, you know, don’t think of a patient as an alien. You could be the patient yourself anytime. And there’s that, but that these are just humans, just like you and everybody.

[00:35:14] There’s all different types of humans and there’s all different types of you. But don’t make assumptions in either case. Don’t make assumptions about the other person because you really don’t know and you don’t know what the background is. You don’t know what they’ve been through. You don’t know what their level of understanding is. And the way to solve that in both working with a child in a healthcare setting and also in philanthropy is to just ask. 

[00:35:37] And if the nurses just said, hey, tell me a little bit about how did this all happen, and where are you at and are you familiar with hospitals? Have you been in and out? And they’d have a little perspective of how to work with me as opposed to just assuming that you’re just a pain in the butt. Something like that. I think that’s a lesson for everybody to think about. 

[00:35:54] Carole Blueweiss: First of all, your honesty when it comes to talking money and giving and receiving, well, I haven’t had a lot of experience listening to people talk about that in such an honest way, and so I really appreciated that honesty. And I wonder how much of that in terms of the philanthropy world and giving money, is related to also the idea of developing a relationship with the people and just the idea of how important it is to really get to know the person also relates to what you’re saying about getting to know your patient, even though everyone’s overworked, but how important that is, that relationship. 

[00:36:36] Lisa Greer: It’s super important. And on the professional side, I think it makes your job more gratifying and pleasant if you have some insight into what they’re about and what their experiences have been.

[00:36:45] If you ask somebody, have you had a lot of experience in a hospital like the people with the blanket, and they said, no, we really haven’t. We’ve never been in a hospital. Our kids never been in a hospital before. Then you know they might not know that you can ask for a warm blanket, but if they say, yes, we’ve been in and out, you know you don’t have to talk to them about blankets because of course they would know that.

[00:37:02] But how are you gonna know that if you don’t ask? And philanthropy is the same thing. And how do you know that development and advancement mean that’s a fundraiser? I didn’t know that. But if all they had done is asked and said, have you been involved in this a long time? And I have to tell you that in both cases, medical or in philanthropy, just the fact that somebody’s asking you that question and showing that they care about you in that way, that they wanna get some perspective on you to do their job better, makes you much more likely to engage with them and tell them how you feel.

[00:37:34] Carole Blueweiss: Which is half the story in terms of diagnosing sometimes and also prognosis. If you have a patient that’s relaxed and trusting, there are studies that show that that goes a long way to healing faster and getting people out of the hospital quicker. 

[00:37:47] Lisa Greer: This isn’t rocket science, right? It seems like it’s human nature, but for some reason, I think you’re right, might be because people are rushed or people just don’t wanna feel, they are gonna get that connected.

[00:37:56] And you always see things about homeless people and you say, how are you? Let’s talk for a moment. That’s priceless. And so I think medical professionals, and I think that fundraisers should do the same thing. I suggested in a lot of articles during Covid have the fundraisers just call some of these people or send them an email and say, how are you really, how are you doing during Covid? And that’s it. Not give me money, please now, but how are you doing? 

[00:38:18] And that makes me as a donor much more likely to wanna give them money. And if somebody says in a hospital, how are you doing, mom? That means a lot to me. And that does happen sometimes and every single time it happens, I just love it. I’m like, oh boy, I feel a connection to this person. They really care. 

[00:38:34] Carole Blueweiss: That’s why I think the book is so revelatory that if someone actually really sincerely is curious about you and wants to know more, that that goes a long way for what you’re trying to do with them, whether it’s healing or asking for something. 

[00:38:48] Lisa Greer: That’s right, and I hope that’s something that everybody’s hearing because I think it’s really important. All sorts of things will run better if people just think about taking a moment and asking. 

[00:38:57] Carole Blueweiss: It was very nice to read about the place in Los Angeles where you’re very involved. Cedars-Sinai? 

[00:39:03] Lisa Greer: A lot of this research is done at Cedars and other hospitals. They’re coming up with all sorts of interesting things. The department that we founded, the research lab, started with one person. It now is 25 full-time people, and they created all sorts of personalized medicine. It’s pretty exciting. 

[00:39:18] Carole Blueweiss: Is there anything I haven’t asked you that you’d like me to ask or that you’d like to say? 

[00:39:21] Lisa Greer: I don’t think so, but this has been really interesting, so thank you so much. I have not had a conversation like this before, so it’s been really awesome.

[00:39:30] Carole Blueweiss: For me, too. This has been awesome. Thank you so much for joining me on Wisdom Shared.

[00:39:38] If anybody wants to get in touch with you, what’s the best way to do that? 

[00:39:42] Lisa Greer: The best way is just to go to lisagreer.com, L I S A G R E E R .com, and that has previous podcasts on it. It shows how to sign up for our newsletter. It tells you how to get the book, how to get in touch with me, all those kinds of things. So that is probably the easiest way of all. 

[00:39:58] And if anyone’s interested in the philanthropy side, my website, my blog, a newsletter is at philanthropy451.com, and you can just sign up there. And then for the other non-profit things, myFace, it’s myface.org and, and also these foundations, Crohn’s and Colitis Foundation, the Epilepsy Foundation, they have lots and lots of resources and information that’s really good.

[00:40:25] Carole Blueweiss: I hope you enjoyed that episode as much as I did. While editing this episode and the introduction, my mother went to the hospital and I had all of Lisa’s ideas in my head. Reflecting on what Lisa shared with me in the interview, I thought about how my experience was with my mother in the hospital.

[00:40:45] Honestly and gratefully, our hospital experience went just how Lisa would’ve envisioned an ideal hospital experience to go. One that showed caring, listening, transparency, and connection. The physicians assistants, the nurses, the RNs, the doctors, the transport team, the people who came to clean the room, and the people who came to bring the food, all of them paid attention to my mom.

[00:41:10] They asked my mother how she was doing. They seemed to really care. And the different medical teams introduced themselves to me and asked me questions, and I could tell they were listening. They explained things very clearly about what was going on with my mother, and they wanted me to understand, so I knew exactly what Lisa was talking about when it actually works and how it makes you feel when the medical staff ask you, how do you feel? What is going on? Tell me a story about yourself. 

[00:41:38] And that’s exactly what the staff at New York Presbyterian Hospital did with my mom. This not so rocket science made all the difference in the world. Some of my other takeaways from this episode are health trauma doesn’t stay buried in the past. It stays with you.

[00:41:55] It’s important to find the right doctor. Online resources and support can be helpful, but it can also be very confusing. The healthcare atmosphere can be intimidating, but it shouldn’t stop you from asking what you need and what you want. Transparency is the currency of trust, and that applies across all realms.

[00:42:17] How you treat people has a lasting impression. Making a human connection is the most important thing anyone can do, whether it’s asking someone for a donation or treating them in the hospital.

[00:42:34] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to careoleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

Episode Notes

Episode Summary

In this episode, we meet Patty Braendel, a special education teacher who is an adoptive mom, a birth mom, and also a foster mom. We hear about her journey to parenthood with all its ups and downs and learn how her experiences as a parent have helped her work in special education. 

For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/6gINmxyiQ5o

Resources

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Transcript

[00:00:00] Patty Braendel: With adoption, there’s brokenness. And with foster care, there’s brokenness. But out of that can come a beautiful putting together of lives in a way that wasn’t expected. I couldn’t think of anything other than having the kids that I have. So, I don’t look back and go, ugh, I just wish I had four biological children. We don’t think like that. Like we have who we have, and they were meant to be in our family. 

[00:00:31] Carole Blueweiss: That was Patty Braendel. 

[00:00:34] Patty Braendel: I am short, sort of blonde hair. I have two different colored eyes, brown and blue. 

[00:00:39] Carole Blueweiss: You heard that right. Patty has one blue eye and one brown eye. I saw those eyes for myself. Eric and Patty are both white and they have four children.

[00:00:52] Patty Braendel: Emily is same height as me. When you look at her, you can tell she’s Thai. Basically the same size in clothes and everything. It’s funny. And then Luke, five-seven, super curly hair, brown eyes. Luke is brown. Then we have Gunther, who is six-one, is a carbon copy of his father. Looks just like him. Which I say is so not fair because I gave birth to one child, and he does not look like me at all.

[00:01:18] Then Hannah is not even five feet, and I think she’s done growing. She has super straight brown hair and has the very traditional Chinese-shaped face, her eyes and everything. Hannah has had a hard time with that growing up, looking different than her sister. We’ve had plenty of math jokes and people assuming that our Asian daughters are very good in math.

[00:01:42] Hannah does not like it. It is not her thing. When they were two, three, and four, we spent our summers at the pool. Cuz that’s what you do. You get the kids tired, you go to the pool. And so Gunther would get really tan. I’d have people asking me if they were triplets. No, no. They’re all very different in their own ways.

[00:02:01] Do I need to show you Gunther’s bottom to show you that he’s white? Because one time someone asked me if he was biracial, and I’m like, no. People say the craziest things. So, we all definitely look very different from one another. We’re proud of that. We like that. We keep people guessing, I guess you could say.

[00:02:19] Carole Blueweiss: Welcome to Wisdom Shared, where parents and the children are the experts, and where connection inspires change. My name is Carole Blueweiss, and yes, I have two blue eyes. Today, Patty Braendel is my special guest. One warm night, we were watching our two sons play baseball, and I couldn’t help but notice that on Patty’s lap sat this beautiful little Black girl with pigtails. She looked like she was about two years old. Yeah, she had me guessing all right. I admit it.

[00:02:55] Welcome to Wisdom Shared, Patty. 

[00:02:58] Patty Braendel: Thank you for having me. I’m so happy to be here. 

[00:03:01] Carole Blueweiss: Who is Patty? 

[00:03:02] Patty Braendel: Who is Patty? Let’s start with I’m a wife, I’m a mother, and I’m a special education teacher. Been married for 25 years. I have four children. I’m an adoptive mom, a biological mom, and then I’m also a foster mom, so I have one foster baby with me now.

[00:03:20] And then I am in the special education field, and I teach at an elementary school close by home. When we had unexplained infertility, it was Eric who said, well, we will adopt then. And I was like, I don’t know if that’s the answer. It took me a while. With Emily, it happened really fast. We got a call and two weeks later she was in our home.

[00:03:40] She was so easy and so wonderful and so loving that it wasn’t scary at all. Like I know my mom was super concerned about it. Cuz you always will get the questions, what if they take them away from you? And of course, you have to know about how adoption works. We weren’t worried about it past a certain time, but I know my family was worried about that.

[00:04:01] It’s hard for people to open their hearts to a baby that could potentially be taken from them. So brought Emily home. She’s 20 years old now. And then Luke is 10 and a half months younger than Emily. So, we had those two. And then I got pregnant with Gunther. So, when I had Gunther, I had a one and a two-year-old at home. So, I had three under three when I had Gunther. 

[00:04:24] Carole Blueweiss: There’s that aspect of adopting a child and that fear of them being taken away. 

[00:04:29] Patty Braendel: Mm-hmm. 

[00:04:30] Carole Blueweiss: And then what about the fear of getting attached to these kids that are foster kids, that you’re gonna have to give them away. 

[00:04:37] Patty Braendel: With the foster children that we have, like we’re here at this time right now to be a safe place for them. They need to be bonded to someone. Humans need that, and so we want to provide that attachment and that bonding that they would otherwise not have. If you think about it, like bounce from home to home or even like in a group home, in a not safe place. We’re willing to put ourselves out there so that those kids have that chance.

[00:05:06] We had to say goodbye to two different sets of long-term placements. Both were hard to say goodbye to, but we know that we did our part in what we could do. And you always accept that you’re not a decision maker in the process. Foster parents do not make any decisions. We can only be an advocate for them.

[00:05:26] And just hope that the people who are in charge of their case, that they’re doing what’s right for them. We can do our part and we know we have a very specific part. And then past that, we know there isn’t anything sometimes we can do. So, my kids have gotten attached to certain kids. I know my oldest daughter, Emily, had a really hard time when one of the little girls left.

[00:05:48] That was also just an opportunity for Emily to learn and to grow, too. So, we’d look at it like that. It’s not easy and you’re sad and you do hurt, but is it okay? It’s okay for me. I’m an adult. I can hurt in order for these children to have a safe place and to have loving people in their lives for that time.

[00:06:09] Carole Blueweiss: At one point, did you have six kids in your house? 

[00:06:11] Patty Braendel: I think the most we’ve had is seven. Lots of Costco runs. And I was home full time with them, so I was taking care of all of them. Luke is 19. He is our second child. We adopted him when he was about two and a half months old. 

[00:06:30] Carole Blueweiss: Did he start off in foster care?

[00:06:32] Patty Braendel: No, it was a private adoption. So, he was with his birth mother for the first two and a half months of his life. She was working through whether or not she wanted to place him for adoption or parent him. And we had met her shortly after he was born. Acquaintances and friends had connected us, so we were not working with an agency or even working with an adoption lawyer.

[00:06:58] We got a phone call. We know a birth mother who’s looking for a family. She’s thinking about adoption, and would you be willing to write a letter, send pictures, and meet her? So, she read our letter. We met her and her mom. She was in her twenties. She was still trying to figure out what decision she was gonna make.

[00:07:18] We hadn’t heard from her. We had just assumed that she was not going to place him, at least with us. And then one day out of the blue, I got a phone call and she said, I’m ready. I want you to be Luke’s parents. Will you do that? And we said yes, absolutely. So, we drove up to Northern Virginia. It was about 45 minutes away from where we lived, and we went to their home, and we had a little hello and goodbye type ceremony. She read him a book and gave him gifts and stuff, and then off we went down the road with a little guy that we had never met before and he cried the entire way home, and then he pretty much continued to cry for most of the first year of his life. He came to us a very stressed-out little baby.

[00:08:01] We went through everything. Does he have colic, does he have this? He did have a cleft palette, so we thought maybe that’s why he’s so fussy. He’s on special formula, special bottle. He had surgery at nine months old to have that fixed and he was good to go. He could eat and drink and do everything all of the other little babies could do.

[00:08:19] He was just not very happy. I was home full time with him, with our other daughter who was a year older than him, and he cried so much that when Eric came home from work, it was my time to leave the house because I had heard him cry so much. We really had no idea just how stressed out he was at the time. We were just living it like day to day. Like we didn’t know what to do. 

[00:08:44] Luke has been a great, great teacher to us unknowingly. He doesn’t know this, but we have shared this with him. We learned so much from being his parents through a lot of really hard situations. He is not attached to our family emotionally, currently, in a way the other three children are. He just really isn’t. And we did everything we could think of to try and form that bond with him. And we just didn’t. We just know that we did the best that we can. We loved him. We still love him.

[00:09:21] We knew we wanted another girl. We decided to adopt from China, and that is Hannah. Although at the time we thought it would take just a year to adopt her, it ended up from the time we put in our paperwork, it took three years to bring her home. 

[00:09:37] Carole Blueweiss: Emily is half Thai and half white. 

[00:09:40] Patty Braendel: Yes. Luke is biracial, he’s Black and white. Gunther is just plain white. And Hannah is Chinese. 

[00:09:50] Carole Blueweiss: It just sounds so extraordinary to live with such a diverse family. It’s hard enough to raise a family. 

[00:09:58] Patty Braendel: Right. 

[00:09:58] Carole Blueweiss: That everyone’s similar, and then you have all the caveats of the adoption versus the foster versus born. You must have some interesting stories about how their race, each one of them, maybe they had to deal with life differently. 

[00:10:13] Patty Braendel: Yes, of course. I’m white and I have children that do not look like me. So, a lot of the times early on the questions would be, are you the nanny? Are you babysitting? Early on, I would take offense to that because it was just like, no, these are my babies.

[00:10:28] We’ve gotten past that. We’ve had the really awful comments. I was definitely more sensitive to it than Eric ever was. Just different references to the kids’ color of their skin. Comments like, your children are already tan? No, they’re just brown. That’s their color. Different things like that, and you can just see sometimes it’s not even the words that they would say, it’s just how they looked at you. And depending on where I was, which if I was down south, it was different. If I was up north, it was different. 

[00:10:57] Carole Blueweiss: What was your actual experience up north versus down south? 

[00:11:01] Patty Braendel: It wasn’t received really well down south. I was one time in South Carolina at a McDonald’s, and I had all three of the kids with me, and the lady at the McDonald’s was just very mean to me. I know Luke probably would’ve been fussing at that time. But what I felt was she saw me as a white lady who wasn’t being kind to a boy who was not white, which was not at all what was happening. But you can feel that. You can feel how people are offended or how they’re looking at you. And some of the words, I can’t remember all of what she said to me, but it just was so not nice.

[00:11:35] And then up north, we would get comments. So yes, they’re adopted, but people would actually ask, are they adopted? Right in front of them. Often, they would say, do they know they’re adopted? And of course, they know they’re adopted. Our kids knew from day one that they were adopted. They don’t look like us.

[00:11:54] And just things like that they would say, and if I could have written down every comment, I could write a book. I remember sitting at a restaurant with a really good friend. And she had little kids. And I had little kids. And Luke I think was a baby at the time, and she said it would not be okay for her son to marry a Black woman.

[00:12:15] And I’m sitting there thinking, wow, I’m sitting here with children who are of color and you’re saying in front of me that it would not be okay for your son to marry a Black woman. And I was just like, wow. You’re saying that to me, I’m your friend, and I’m sitting right here with babies that are not all white.

[00:12:36] Just different things like that where you’d just be amazed at how people think. And that would’ve been probably 17 years ago, so not that long ago, but just certain people will surprise you sometimes. And then of course, obviously we got lots of wonderful comments and lots of very kind and loving and understanding people that were just like amazed and just really appreciated people who are willing to go outside of the traditional type family.

[00:13:02] A lot of people would say, oh, they’re so lucky to have you. No, it’s, that’s not it at all. We feel very fortunate to have them. Weren’t out to rescue anyone. We just wanted a family. I wanted to be a mom. He wanted to be a dad, and adoption is how we were able to start our family. We obviously have grown and matured and learned from a lot of different experiences with them, which then helps us with being foster parents.

[00:13:28] Carole Blueweiss: That makes me think that there was that stereotypical attitude or that there’s pity or, no, they’re just human beings just like everybody else. They’re just adopted or. 

[00:13:38] Patty Braendel: Right, so they didn’t ask for that to be their story. And I would say there’s brokenness as part of their story, but that doesn’t mean that they have to be viewed as that.

[00:13:51] Carole Blueweiss: What is Luke doing now with his life? It sounds like you’re not in touch with him or? 

[00:13:54] Patty Braendel: We are definitely not in touch with him daily. We’ve done so many different things. He was always in therapy or in programs or away in a private school. Different things that we were just hopeful that would help him just make better decisions in life and to be a better version of himself.

[00:14:11] So to back up, he was in a therapeutic wilderness program for about two and a half years. It was in Pennsylvania. They’re living outside in cabins. It’s a lot of hands-on learning. It was all boys and they worked through their issues. We are all part of a team. He would be gone for five weeks. He would come home.

[00:14:32] And it was all part of a process to see if he was making progress on the different goals that he had set to go. And he had to agree to go to this program. You don’t send them there kicking and screaming. They need to buy into it. They need to agree that it’d probably be a good decision to make. We did this before high school.

[00:14:52] We knew where it was headed. It was not gonna be a good situation, and he was making bad choices. And we wanted him to be safe and we wanted to be safe. So, we put him in that program and usually it’s about 18 months long and our son took two and a half years to graduate out. And even the graduation is all a team decision, too.

[00:15:12] It’s do the parents feel that he’s making progress at home? Do the counselors, all of the above, does Luke think that he’s making progress? He came home and I will say when we had the meeting right before graduation, my mom was there, Eric’s parents were there, and we were all sitting in a circle with the director and the counselors, and they asked Luke to speak, and he didn’t speak.

[00:15:33] And I knew. Everybody like went up there super excited. Luke’s finally graduating, he’s coming back. And he didn’t speak, and he didn’t have anything to say, and I knew at that point he probably hadn’t changed, but we were hopeful. So, he came back home, and it didn’t go well. Just decisions that are not okay in our home.

[00:15:52] Carole Blueweiss: Can you give an example just so we can understand? 

[00:15:54] Patty Braendel: Let’s see. So, he had zero concern for schoolwork or anything. He had a lot of trouble with any authority. So, he was starting to make decisions like where we couldn’t trust anything that he said. And he had a lot of anger. I don’t wanna be in a home with almost an adult who I don’t feel safe with.

[00:16:15] So a lot of explosive anger at the time, slamming doors or different things like that. And it was escalating to the point where we’re like, is it going to get physical? We don’t want that to happen. We just have certain things like, yeah, if you’re gonna leave the house, we need to know where you’re going, what you’re doing.

[00:16:32] To the extent that teenagers will tell their parents, but he was not doing anything in school, and it was living in a house with a kid who never spoke to us whatsoever. He wouldn’t talk to us. He would not talk to us. So, he’d be in his room, which was in the basement. He wouldn’t speak to us. 

[00:16:48] Carole Blueweiss: Was that the case when he was younger, too?

[00:16:50] Patty Braendel: Yeah, a lot of it, yes. But he was always very friendly to family members or strangers, like way more friendly to them. And that’s part of what we’ve learned over the years, especially with foster parenting, is attachment. He didn’t have healthy attachments and kids that don’t have healthy attachments tend to be overly comfortable with strangers or people that are not close to them, and that’s how Luke was.

[00:17:18] And we didn’t know at the time that was what he was struggling with. And just like things like with girls that he’d be dating, we didn’t trust him. We didn’t trust him to treat who he was dating in the right way. We knew him and we were just, we’re trying to raise a gentleman, we’re trying to raise a good human being and he fought us on like everything. We, at the time, we knew he hated living with us.

[00:17:41] We knew he didn’t wanna be around us. So, we said, if you, he’s 17 at the time, we said, if you can find somewhere to go, a friend, some other place, if you want to move out, you’re 17. You’re almost an adult. You can do that. Like we’re not forcing you to stay here. And he had off and on throughout the time that he was in the therapeutic wilderness program, talked about his birth mother and had talked about not liking the fact that he was adopted and not liking his story.

[00:18:13] He didn’t really ever share that with us, and he wouldn’t talk to us about it, even if we tried to talk to him about it. We were not parents that, oh, let’s not talk about the adoption thing. We wanted him to talk about it. We would not have been hurt if he said to us, I didn’t want to be adopted. He didn’t ask for that. He didn’t ask for that to be a part of his story. 

[00:18:33] We just wanted to help him work through it. And he felt very abandoned. And so, for him, a huge word for him is abandoned. He in his heart felt abandoned by his parents. So even though Eric and Patty Braendel provided a safe place for him, a loving home, brother and sisters, loved him, everything we could think of, in his heart and in his mind, he was an abandoned child. He was abandoned. And so, he lives that. 

[00:19:01] So then therefore, he did not form an attachment with us. So, I offered to help him when he was in the program. We did invite his birth mother over to our house. We had always kept in contact with her, and we said, we think it would be really good if you were to sit down with Luke. He was 16 at the time. And can you please tell him your reasons for placing him? Can you tell him your thoughts, your feelings, what you want for him in life? And she was, of course, willing to do that. We knew what type of person she was. She wanted the best for him. 

[00:19:33] She did not want to be a mom on welfare. She didn’t want for him to be raised by a single mom who was gonna struggle every step of the way. She wanted him to have two parents, and she wanted him to have opportunities in life. So, she came to the home, and she sat there with both of us, Eric and I, and Luke. And she explained everything and asked him any question you have, I will answer.

[00:19:59] He didn’t have any questions for her. He did sit there the whole time crying. A lot of times he would just have tears rolling down his face, but he wouldn’t talk. He wouldn’t say anything. She asked him to forgive her, he said right away, yes. And then she even said, you don’t have to forgive right now, but we don’t want it to just be an automatic yes, you need to work through that.

[00:20:19] After that, I think it started in his mind what life should have been like and I should have been with her all along cuz she’s a lovely person and she’s married, she has little girls. And I think he’s thinking, why wasn’t I good enough? So, I think that just drove more of his anger. And so, I said, we know that your birth mom said it would not be a good idea for him to live with her right now. She would not be willing to do that. 

[00:20:48] So I said, do you want me to help you find your birth father? And he said yes. Because it had gotten so bad at our house. He just didn’t wanna be there. And so, I located his birth family on his birth father’s side down in Georgia. And I put him in contact with his grandmother and he got a phone call. And really, we were trying to find the birth father, it turns out he was actually living with the grandmother at the time. And he asked could he come live with them? And they said yes right away. We sent him down there for Thanksgiving just to visit. He talked with them further and he had decided by Christmas time he was gonna go live with them. So, he did. We have to help him pack up his stuff and we sent him down there.

[00:21:36] That lasted not very long. Not even a year. It did not go well. And Luke actually was then going into an all-Black high school, an all-Black neighborhood. Just a very different community than what he was used to. So, it was a very different experience for him. And we also think he was also struggling all this time with being biracial.

[00:21:59] Do I identify with being white or being Black? How does that fit? He didn’t know how to work that out. He, I think, always felt like he didn’t know where he fit in. He was in Georgia, and it was a very different environment than what he grew up in. So that didn’t last a full year, but he had turned 18. So, during that whole time, he kept in contact with his birth mother, and I will say the birth mom and the birth dad do not get along. So, there was that whole aspect of it. 

[00:22:28] So she had agreed when he turned 18 that he could go live with her. So, he moved up there to Virginia to live with his birth mother. I don’t know how long it was before it fell apart there, too. It did not work out. Just breaking the rules that she had set. And one of the rules that she had was agreements they made is that if you come live with us, you’re gonna be in therapy.

[00:22:51] And I think he would do that for a little bit and then stop. But he was just drinking too much, threatening to harm himself. Just like some really dramatic stuff that he had never done with us. And she decided it wasn’t safe for him to be at the house. So then, He left, and she helped him get hooked up with a group called Hope Mission or Project Hope, I can’t even remember the name of it.

[00:23:13] What they do is they help teenagers in Luke’s situation where they suddenly find themselves homeless. They help them finish high school, find them a job and a place to live. And so, you have to agree to be working to then be a part of the program. And so, they had it all set up and Luke was working, and he was gonna graduate high school and I guess he didn’t want to work anymore, so he was asked to leave the program and he chose to go live at a homeless shelter.

[00:23:44] So he is now, what we’ve last heard, he’s in a homeless shelter in Virginia. But he, we think he’s gonna finish high school. Before Eric put him on a plane to go to Georgia, he was sitting in our living room and I had said to him, is there anything that you would’ve wanted us to do differently? And he said, no.

[00:24:02] And he said it with tears down his face. He’s a very sensitive kid. Eric just looked at him and he tends to listen to Eric differently than he does to me, and he said, Eric just said, can you please finish high school? We just want you to finish high school. Luke said, yes, that’s my intention. In Georgia, I think you can drop out of high school at 16.

[00:24:22] So we knew there was a chance when he went down there that he could just say, I’m done with school. But he has stayed in school, and I think he’s ready to graduate. I think the last time Eric talked to him was about college money or something like that. But he’s not a part of our family in that way. 

[00:24:38] So does he call us on holidays? Does he say happy birthday? Happy Mother’s Day, happy Father’s Day? No. He started referring to us as Eric and Patty. So, it’s very strange. I have cried a lot over this. I have been hurt over and over again. Just our hearts have been like shattered by just wanting, like, just pouring everything we could into helping him and loving him. And it just never, I don’t know if the word is clicked or it just never, he just didn’t want to be with us, but he never spoke badly of us either.

[00:25:17] So in the program he was in, most of the kids had many words to say about their parents, whether it was adoptive or not. But one thing the counselors would always tell us is that Luke always spoke very highly of us and had great respect for us, and so, that just helped us know that we really are loving him and trying to provide the best opportunities in life for him, just to be the best version of himself.

[00:25:43] And he just can’t get himself there. It’s not us. When he actually packed up his bags, friends are saying, how could you let him go? How could you let him go? You don’t even know where he is going. And we’re like, he’s basically an adult. And this is what he needs to do. We’re gonna let him do it. We’re not gonna fight him on it.

[00:26:00] I’m not gonna keep him here under protest. And we’re okay with that cuz there’s no holding on to him. He’s gotta go and figure out what it is in life that he wants. And so, going back to how can I foster kids and then let them go? I’ve had a huge example of that with someone that we raised from two months old to 17.

[00:26:20] We had a lot of people in our lives be really hard on us when it came to Luke’s behavior and what was going on with Luke and why isn’t Luke doing this and this and why are you having so much trouble with Luke? My own father-in-law, lovely man, wonderful. I don’t have anything bad to say about my in-laws. I love them. But even them, he one time wrote us a letter saying, I think you need to hug him more. And we were just like amazed. So many people were trying to figure out why is Luke the way he is, and we can assure everyone. I love babies, so of course he was hugged and held and all of that. I look back, could we have held him more? Could I have done what some people do now? Where you wear babies on you all the time? Probably yes, but we just were parenting the way that we parented Emily and the other kids.

[00:27:14] Eric, he was even still talking about fostering, even in the thick of it with Luke. Eric had this brilliant idea. We have more to give, and we have the ability to love more and we can do this. And I’m looking at him like, you really have lost your mind if you think I can take on another whole situation of unknowns and put myself out there again. I am a very sensitive person. I do love deeply, and Eric does too. If there’s a weaker of the two, it would be me. He just kept bringing it up and I would say, no, not now. You’re really gonna ask me this when Luke is going? So, we started fostering while Luke was still in the home. 

[00:27:59] As foster parents, we would sometimes do respite, which is taking care of children that are already with a foster home, but the foster parents need a break or they can’t take them out of town with them, just different reasons. At one point, we had a sibling set of three, two of which were children with special needs. We had them for a couple of weeks, and it’s just a matter of saying yes, just to help another family out. We would do that off and on. Those are really short-term placements. We’d also say yes to long term, so you never know when you say yes, you don’t know how long it’s going to be. 

[00:28:33] Carole Blueweiss: The plan for the second long-term placement was for Eric and Patty to speak with the foster parents who were taking care of these two brothers and to ask them some questions. 

[00:28:43] Patty Braendel: The foster mom that had them just temporarily, she took them in on an emergency basis until they could find a home. That happens, too. She had four of her own kids, too. She just couldn’t do it. But we were told boys doing really well. Very well adjusted, doing well in school. They told us no major behavior issues. They’re not on medication for anything. And so, you learn as you go to sometimes read between the lines. Eric and I have gotten better at that. Reading between the lines, what they don’t say often speaks louder than what they do say. 

[00:29:19] We had a very short honeymoon phase with the boys, and that happens most of the time with any placements that you get, where things go really seemingly smooth. They’re really trying to behave. They’re scared. They don’t know what’s going on, and just trying to keep themselves together.

[00:29:37] Carole Blueweiss: The day before the boys were set to arrive, they got a call from the caseworker. And there was a problem. 

[00:29:44] Patty Braendel: They had just been to the doctor and the boys had scabies. I had no idea what it was. They were getting medication for it, and would we still be willing to take them? And of course, we’re all like, Google, what is that? What do we do? 

[00:29:58] We didn’t wanna say no. When we got to the office and we brought them home, they met the rest of the family. Everybody was running around playing. And it actually was good to have that many kids at the house. The boys had someone to play with, but that night, as we go to get them ready for their first night at our house, both Eric and I had to help them get cleaned up.

[00:30:19] They were seven and eight at the time, and then we both had to help them take an entire tube of this medicated lotion and put it all over them. And I’m sure the boys were totally horrified. They handled it really well. It was bad, and it is very contagious. So, you put them to bed, they slept in it, and then they wake up and then you have to wash everything that they’ve touched.

[00:30:43] So that was the very first night that we got them with scabies, and we were freaking out for several days after, thinking, oh my goodness, I hope it doesn’t spread to all of the other family members. And I don’t know how many weeks it was, but it quickly started to go downhill with one of them, and then we realized, wow, what have we gotten ourself into? These kids have a lot of trauma and they don’t know how to handle themselves. 

[00:31:12] Carole Blueweiss: Their behavior started to change. Tell me a little bit about that. 

[00:31:15] Patty Braendel: It usually started around bedtime, and they didn’t want to go to bed. They had a hard time falling asleep. They used to always have a TV on. In our home, our children that we raised never had TVs in their room, and it was just a house rule, and it was our house rule, and we weren’t going to change that for anyone. So, they had to learn to fall asleep in the quiet. We read books with them. They were in the same room, and they had a really hard time falling asleep. So quickly, it turned into out of their room a lot, and then it turned into banging on the walls, banging on the floor, slamming the door. So, it was a lot of that negative attention that they wanted, and the more we tried to get them to stay in the room, the more they wanted to not stay in the room. So, we’d have to stay outside of the room and wait until they fall asleep. And it took hours and hours. Meltdown after meltdown. A lot of screaming, a lot of banging of the door, all just stuff like that. And they can’t explain to you why they’re doing what they’re doing. They’re just doing it. Once we get one settled down, the other one would start. So, it was a lot of work for both Eric and I. 

[00:32:23] Carole Blueweiss: And what was happening with your other kids at that time? 

[00:32:26] Patty Braendel: Emily, Gunther, and Hannah were actually used to that because Luke had gone through some of that same type of stuff growing up, so they were not at all surprised by the tantruming. So actually, they handled it really well. 

[00:32:44] Carole Blueweiss: Do you get training on how to deal with that? 

[00:32:46] Patty Braendel: We just finished a 16-hour course on trauma-informed parenting, and that would’ve been a class that would’ve been really super helpful for us to have had way back when we started. Just learning about the term behavior is communication, so they’re trying to communicate something to you.

[00:33:06] They don’t always know what they’re trying to communicate, but it is a way of communication. And just how to see children through the trauma lens. You’re not going to see these children in the same way that you look at the children that you’ve raised from day one. So just learning how to see their behaviors and what is going on from a different perspective.

[00:33:29] And to be able to handle that, incredible amount of patience has to be involved. We didn’t always handle it perfectly by any means. A lot of times we had no idea how to handle it, but we did our best. Kids are really only supposed to be in foster care for a year, but you always hear the stories that it goes longer because they can extend, and so we had them for so long.

[00:33:51] They had family members fighting to get them, but they were all denied through the court process. They were all denied. So of course, they were asking us if we would adopt them, and we said we do not feel that this is the right fit for us. We felt that they needed to be in a different area of where we were living, for them to have chance at being able to start a new life, because at the time it must have been, yeah, nine and ten, so they were six and eight when they came with us. They had to be able to start over in a whole new family and where we lived, it would be easy for them to bump into people that knew them or were related to them, and that was really hard for them. So, they found another family that was willing to adopt them, and it was a special education teacher.

[00:34:41] They were super excited. We did the transition of short meetings, then overnights and all of that, and the boys were super excited. They were going to live in a home on five acres. These boys were outdoors boys. They raced four wheelers. But these boys were doing this at a very young age. They were a racing family. That’s where they came from. So, then they were brought to our house and we’re, no, we don’t do any of that. So that was a very hard transition for them. So, we thought they found a really good fit for the boys. And here Eric and I aren’t sitting across the table with the adoptive family trying to tell them everything we could about the boys.

[00:35:21] What do you wanna know? I can tell you this is where they struggle, all of the above, and they were like, we got it. No problem. We got it. Eric picked up on it before I did, that they just had an idea of what they thought they needed to do. 

[00:35:37] Carole Blueweiss: When you say they weren’t receptive, you mean that you intuitively felt like they weren’t really listening? 

[00:35:42] Patty Braendel: Right. Yep. Yeah, they didn’t want to know what worked and didn’t work for the boys. I think honestly, what ended up happening was they thought we had fixed them and were sending to them two very well-adjusted boys, which at the time with us, they really were. But that was after us going through so much with them, and they had finally settled in.

[00:36:06] They felt that they could handle what they were getting into. I found out that it did not go well, and they gave up on them, so then they were back in the system again. Fast forward to like a year after that, another couple is adopting them, and I’m hopeful, and I think they’re doing really well. We keep in contact with the foster mom who had originally had their other two siblings, and so she adopted their little sister. Their older brother was adopted by another foster mom. So, I think they’ve all been adopted at this point. So that was really hard for us, makes it a lot easier. 

[00:36:47] Carole Blueweiss: What do you mean? What do you mean? 

[00:36:48] Patty Braendel: So, we have a certain set of standards for how we would raise a child, what would be acceptable to raise them in the environment, what we provide for them, and what is, what the state has to require of a biological parent in order to get their children back. It has to be really low. 

[00:37:10] Because, and one lawyer said if the standards were such, not the standards they are currently, he said something to the effect of, let me get my bus out. I could drive around and be picking up busloads of kids right now from their homes. And they’d be in foster care. So, it’s not how my kids’ grandparents are. But do they love those children? Yes. Would they raise them how we would raise them? No. But would they be safe and okay? Yes. They just didn’t win out in court and it’s sad to watch. And as a foster parent, there isn’t anything you could do about that. So, you just sit back and watch it all play out. 

[00:37:47] Carole Blueweiss: So, are you saying that it’s not in the children’s best interest to go to that situation or that it is?

[00:37:54] Patty Braendel: Sometimes it is, but state doesn’t agree. Like it’s interesting. So, in this situation with these boys, extenuating circumstances if you have a criminal record from whenever ago, sometimes that can just be something that excludes you from getting the children, and that’s really sad because sometimes people change, and that could have happened years ago.

[00:38:19] Certain things like that, or just education wise. So, the boys had a lot of trauma. They had a lot of triggers. They had a lot of behaviors that were troubling that whoever was going to care for them needed to know how to handle those. But the grandparents didn’t understand that. But it’s not because they didn’t want to understand, it’s because they have not been educated in that way. 

[00:38:42] Carole Blueweiss: You’re saying, what do these grandparents have to learn? Let’s teach them. 

[00:38:45] Patty Braendel: Yeah. And if they’re willing, why not? And they would be safe with them. I felt so bad because he was so attached to his grandfather. His name was Papi. He loved him and actually he was like a carbon copy of him, and he had this very rare type of condition that he was of lower IQ. He had, what it was is some kind of chromosome issue. He had a bunch of extra little folds in his brain, and it just caused some learning disabilities. When you met him, you would know something’s not quite right with how his, let’s say executive functioning. But when you meet his grandfather, he’s a carbon copy of him.

[00:39:29] So they’re not gonna notice that something’s different about him because he’s very much like him. So, it’s things like that where that could be seen as a negative on the biological family’s part, but they didn’t know. I had to help him get all of the services that he needed in the school system, whereas they were just like, oh, he just has a speech impediment. It was so much more than that. So, things like that can be held against parents, but sometimes the parents don’t know. They just don’t know. And I’m talking about grandparents in this situation. 

[00:40:00] Carole Blueweiss: So, when you were telling the story, I was trying to figure out are you saying that the state, the standards are so low that they will let the child go back no matter how terrible the circumstances?

[00:40:12] Patty Braendel: Yes. 

[00:40:12] Carole Blueweiss: Which is what we hear in the news. 

[00:40:13] Patty Braendel: Mm-hmm. 

[00:40:13] Carole Blueweiss: Or are you saying that the circumstances might not be perfect, but they could be good enough. But still, the state is just being so ridiculously nitpicky that they’re not gonna let that child go to where probably they would be better off? 

[00:40:27] Patty Braendel: The first case we ever had, absolutely, we were very shocked that they sent a four and a two-year-old back home. We were like, wow, you are really sending them back? Yes, they did. Then you fast forward to the next case that we have. We’re thinking, wow, what’s it gonna take for them to get their kids back? So, it’s amazing how they say there are standards and guidelines and rules, but our eyes have been open to so many different situations. And so, when you go into this, you just honestly never know what’s gonna happen. 

[00:40:59] Carole Blueweiss: It isn’t consistent one way or the other. It can go either way. 

[00:41:03] Patty Braendel: It can go either way. And just like with the little girl we have right now where we thought that she was gonna reunified, turns out, no, she’s not. They’re changing it to adoption. So here we are again in a situation where they’ve asked us, will you adopt her? And we are not sure that is the right choice. We’re still waiting to see if they have a relative placement. They don’t tell us a lot. A lot of the times they don’t tell us anything, and so we’re still waiting. But meanwhile, we have a sweet little girl in our home that loves us, is very much attached to us, and I will be sad for her to have to transition to a new unknown family member.

[00:41:51] But then if that’s where she’s supposed to be, we would want her to be with her family member. So that’s a situation that we’re with now. Like Mom just did not do what she should do in the timeline that was given to her, and they’ve decided they’re not going to give her any more time. And so, we’re waiting to see if she’ll go to the paternal grandmother.

[00:42:15] We don’t know, and she just loves us. Both Eric and I, we talk about it. We just, we feel bad. She very much thinks that she’s our child. If she does move, she will go through a transition. She’ll be introduced to the family members. She’ll spend time, and so they try to do it slow, but then slow sometimes is hard for them to handle depending on the kids’ age.

[00:42:39] We’re sitting here waiting to see. What are they gonna do? And they don’t always tell us. They definitely don’t ask our opinion. I had a year break of being a foster parent and he signed us up again for training cuz we had to go through the training all over again in Florida cuz it’s different state by state.

[00:42:54] So I’m like, I’ve just started working for the first time in the school system in special education and now you wanna foster again. You’re crazy again. He’s like, we can do it. We can definitely do it. And so, we are. But I understand it’s a whole different world. It’s not easy, but I guess Eric and I go back to, and it’s mostly Eric who would say this, but if not us, then who?

[00:43:22] So if not us, then who’s going to do it? If we take our number off of the do not call list right now, which we’re on a do not call list because we have a placement and we are not accepting any other placements right now. If we were to just take our number, go ahead and call us, our phone would be ringing. The need is so great.

[00:43:41] I was sitting on a Friday night with Eric. We had two placements. Then he’s getting text messages from the emergency number saying we have three kids that need a home for the night. And I’m like, Eric, don’t respond. We cannot take three more children into our home. There’s just no way. Where are they going to sleep? What are we going to do? At first, he goes, okay, fine. All right, I’ll tell them no. Then he looks at me like not even 10 minutes later, and he looks at me and says, are you sure? And so, I’m like, yeah, I’m sure, like you’re crazy. So, he texted them back and within the 10 minutes or however long actually, he said yes, we can do it. We will make it work. We’ll figure out a situation for where people are sleeping. I’m pretty sure he probably volunteered Hannah and Gunther to give up their beds. And within that timeframe, he got a call back from the on-call person and they said they were actually able to put a safety plan in place for the children to stay in the home that they were currently in.

[00:44:43] And that is code for whoever was the abuser or the aggressor in the situation, that person left. And so, they were able to put a safety plan in place where the kids could stay in the home with the other parent or family member, and the one that was causing the issue was removed. So, I was like, phew, okay, good.

[00:45:05] At least they’re staying so I can sleep tonight. You know, you have a hard time saying no, and then you wonder what’s happened to the children. And Eric’s, if they don’t find a home, they’re just gonna be sitting up at Safe Children’s just in the office, just waiting for a home all through the night. And I said, I do know that, but I don’t wanna think about it. Because that is what happens. If they don’t have a home, the kids will go up to the office and sit in there. And they will stay there until they find a place or a shelter or a group home. And it’s super hard to think about but that is what happens. So, we can do our small part. 

[00:45:43] Carole Blueweiss: And now back to the beginning. Remember when I said how Patty had me guessing cuz she had this two-year-old Black girl on her lap while we were watching our sons play baseball? Well, I got to ask her to please tell me the story of this child and why she was with Patty and Eric at all the baseball games. 

[00:46:00] Patty Braendel: She is going to be two in September. She came to us when she was about nine months old. She’s Black and she is full of energy, full of life. Her sister came with her. She was very much parentified. That means sister was raising baby. So, they take on the role of parent, and you can tell that really very easily when you’re around the two of them. So, imagine a nine, 10-year-old with a baby on her hip and she’s doing everything for that baby. So, she came, we’re told that. And so, our goal was, okay, you’re here with us.

[00:46:39] We can take care of the baby. We got it. We’re the parents. And you just do your thing. That you’ll be fine. But it didn’t work out for her older sister to stay with us. That was a whole other situation, running away several times from us. She has been in the system for a lot of her life and knows how to get removed from a home, so that was new to us for sure. I have never had a kid run away from me like that.

[00:47:03] That little girl sleeps 12 hours a night, and she still does. That’s amazing. But she didn’t hug us, and she was not affectionate to us right away. It took a long time, and we noticed one day she would pat our back and we were like, wow, she’s patting our back as she lays her head on our shoulder. That’s huge. She’s forming a bond with us. She’s showing affection. 

[00:47:28] You look for those things as a foster parent. So, she has really settled in with us. She maintains visits with her mom. They were a lot more frequent when she first came to us because the goal was to reunify them. And when kids go to visit their parents and then come back to the foster home, that’s always a hard transition because typically it brings up behaviors or past things or trauma or triggers or all of the above.

[00:47:56] And so if she was visiting with mom and sister, she would come back a different kid, really feisty, super aggressive. I know toddlers will bite. We know that. But like the hitting, the pulling the hair, the pinching, all of those things, she was very aggressive in that way. We had to warn Hannah, okay, if she comes up close and she, you think she’s gonna hug you or just lay her head on your leg, be prepared that she might be trying to bite you.

[00:48:25] She goes to daycare, which is just good for her, for structure. I would love to be home with her. That’s not where I feel like I should be in the sense that I just started working and I think that there’s a need for me to be in the classroom with the kids that I’m with. And she is loved and cared for and happy at daycare. We don’t know how much longer she’ll be here. I don’t know what it’s gonna feel like if she leaves. We ask our kids what they think before we say yes to anything. 

[00:48:53] Carole Blueweiss: Are there any issues that come up because she’s Black and you’re white? 

[00:48:56] Patty Braendel: Not directly. When we go to church, everyone is, oh my goodness, she’s so cute. And they’re so loving. And so, there’s never anything at church, although we go there and we’re like, we don’t want to be at a church with only white people, if that makes any sense. And it’s not that it’s just only white people, there are other people there, but we’re so conscious of it. It’s important to her to be around people of the same color.

[00:49:23] You’re sitting in a doctor’s office where it’s strictly lower income people. It’s just really eye opening. It just makes you think we’re very fortunate in what we have, so it’s just different. Because I see that in my school too, being in the Title 1 school. 

[00:49:39] Carole Blueweiss: You’re a special ed teacher. Tell us about your classroom and how what you’ve learned through fostering and adopting and just being a parent has helped you as a special ed teacher.

[00:49:50] Patty Braendel: I could go on for days, but I won’t. So, Title 1 school and I’m in an L 300 school. So, in Florida that means our school is in the bottom. So that means the amount of kids in the school that are below poverty that need to be provided those meals, if they’re not gonna get those meals at school, they’re not going to be getting enough food at home.

[00:50:11] I just so happened to be subbing and accepted a long-term position in this class, and I had no idea what type of class it was. And I started in the classroom, got to know the kids, got to figure out where I was, get myself situated, and I knew I wanted to be teaching. I didn’t know where and what, but I just landed in the class and Eric was like, I think it’d be a great idea for you to be in special education.

[00:50:38] No day is the same and you can prepare for everything and then not be prepared for anything. It’s just that’s the way it goes. So, I’m in a K-5 class, so I have kids that could be any of those grades. I could have a kid put in my class whenever or pulled out whenever. You just don’t know. They have all different exceptionalities. Autism, I had a kid with Down syndrome last year. I have intellectual disability. One kid last year was visually impaired. He was legally blind. He had to have a one-on-one aid. Other health impaired, which is ADHD to like the extreme. We’re not just talking about kids that struggle with ADHD and may be able to handle it themselves or take a little bit of medication and they’re good with general education curriculum and all that. These are kids that are just like really incapacitated by ADHD, and they just cannot get themselves together. They’re not comfortable in their own skin. 

[00:51:32] And because of the homes that they come from; a lot of these kids would end up in foster care because they’re living in such crazy situations. Like show of hands, how many of y’all have your own bed? Maybe one or two of the 15 kids will raise their hand. Some of them don’t have a bed. Some of them share a bed with three of their siblings. All kinds of situations. Some live in trailers. I don’t run from that, and I don’t think differently of the children because I’ve been a foster parent. A lot of times, these kids cannot get to a point to even learn because of all of the stuff going on at home. 

[00:52:11] Carole Blueweiss: How do you teach math to a class that’s kindergarten through eighth grade with all different types of disability? 

[00:52:17] Patty Braendel: It’s an impossible situation. So, you have to work in groups. So, I have a teacher’s aide, we break ’em up, we go, okay, you four are at kindergarten level, even though you’re like second and first grade and a third grader that’s in kindergarten level. Okay, so we’re gonna work through the kindergarten curriculum with you. I’m gonna do a lesson and work through with you. Meanwhile, my teacher’s aid’s going to be pulling another group working through second grade curriculum with the fourth graders. It just all depends.

[00:52:45] There is never a time where I am standing up in front of an entire class of kids and doing a whole group lesson. It’s impossible. Last year, I had 17 or 18. I have 15 right now. And so, you just are doing the best you can. I do have kids that are doing really well, and they go to the gen ed classes for certain subjects. So, they do that. They’ll push them out. 

[00:53:06] Carole Blueweiss: What does VE stand for? 

[00:53:08] Patty Braendel: Varying exceptionalities. It’s like a puzzle. How can we get this group over here to be doing this? And I’ve learned that I have to push for things, and I have to be an advocate for these kids, too. So just like I am as a foster parent, as a teacher in this environment, you have to advocate for those kids because these kids are considered the bottom of the ladder for the school as far as abilities.

[00:53:33] A lot of people will say, oh, it’s easy to be a special ed teacher. You’ll always have a job. You’d never get fired. And I’m like, trust me, I’m not here just sitting in a corner doing nothing, because I know I’ll never get fired. I work really hard because they deserve that. They deserve someone to be in there who cares for them.

[00:53:51] And so a lot of it’s like being a parent all day long. And I know teachers in general, especially in elementary school, you’re a parent a lot of the time. You know your kids in that way where you’re trying to just teach them life lessons and how to be a good human and all of that. So, I spend a lot of my day doing that, too.

[00:54:10] Carole Blueweiss: They’re lucky to have you. The danger is burnout. You have a child who has autism, a child who has Down syndrome, a child who can’t see, processing, ADHD. 

[00:54:19] Patty Braendel: I just try to make sure that they all know that they’re loved and cared for. And tomorrow we’re gonna have an ice cream party because they were so well behaved for the lesson today. So, we have to do lots of rewards. And did I bribe them? Absolutely. Did I say that they could have ice cream if they were super quiet and raised their hand and were not out of their seats during the lesson? Absolutely. And you know what? For 35 minutes, they really behaved, and I was amazed. So that’s a little small part of my week in teaching.

[00:54:54] Carole Blueweiss: What advice do you have for other parents who are thinking of either adopting or fostering? 

[00:55:01] Patty Braendel: Adoption doesn’t have to be like second, plan B, second choice. It could be plan A is what I would say. It doesn’t have to be second best. A lot of people are capable of more than they think they are, but then not everybody has to feel that I need to foster.

[00:55:18] There are so many other ways that you can help a foster family. So, if you can’t be a foster parent, you can help support a foster parent. So, like a meal, anything, any type of help. And with adoption, there’s brokenness. And with foster care, there’s brokenness. But out of that can come a beautiful putting together of lives in a way that wasn’t expected.

[00:55:44] I couldn’t think of anything other than having the kids that I have. So, I don’t look back and go, ugh, I just wish I had four biological children. We don’t think like that. We have who we have and they were meant to be in our family. 

[00:55:56] Carole Blueweiss: What have you learned the most from your children? 

[00:56:01] Patty Braendel: Patience. I am not by nature a patient person, and I did not grow up in a home that was like full of that, and I still have more to learn when it comes to that, too. Not having to panic and chaos, but to be like, No, we can be calm through this. And we can be patient and we can have peace through this situation. And so, I think that’s what we’ve learned. I can be standing next to a kid in my classroom or in my home that’s flipping out and most people would be like, oh my gosh, I need to make this stop.

[00:56:35] And we can sit there, and we can sit with them. And be beside them. And I’ve learned that from my kids. And it helps us with our foster kids too, just in all kinds of scenarios. I’m not perfect, so it’s not all the time, but more so than I ever would’ve been coming from like the type of family where just like all go from zero to a hundred real fast and let’s say we don’t go from zero to a hundred anymore.

[00:56:59] And Eric’s really good about it. So, I’ve learned through just watching him how he handles it. You can be calm and at peace through that situation, even though they’re not. So, I guess that’s what I’ve learned the most. I’m sure I’ve learned lots of things, but that’s what’s coming to mind right now.

[00:57:18] Carole Blueweiss: Thank you, Patty, for telling your story, and I know that my audience will appreciate just hearing the inside story of what it’s like to foster, to adopt, just to be a mom, to work in special education, all these ways to grow as a person and help others. It’s amazing. 

[00:57:35] Patty Braendel: Thank you. I’m happy to share.

[00:57:39] Carole Blueweiss: Now for an update. After one year, the two-year-old Black girl in pigtails who was sitting on Patty’s lap at that baseball game, well, she was placed recently with her paternal grandfather, and though Patty and Eric and their kids can’t see or talk to her ever again, they find comfort that she is now where she’s supposed to be. [sounds of small children playing]

[00:58:02] Eric and Patty’s foster parenting continues. [sounds of kids playing] Patty explained to me that after two children are placed in a home, technically that home is closed to more placements. But the people at the agency know that Patty and Eric will say yes to difficult situations. And so, when they got a call that two boys were sitting at the welfare office at 4:30 on a Friday and that they needed a home, well, off they went. And that is why now [sounds of kids playing] the Braendels have four kids under three in their home. Two for short-term placement and two for long-term placement. That’s three boys and one girl. [sounds of kids playing] The eight-month-old boy was born to a 16-year-old mother who also had a child at age 14. There just aren’t enough homes right now, Patty told me.

[00:59:01] [sounds of kids playing] For more information on fostering or adopting a child, please go to the show notes. [sounds of kids playing]

[00:59:22] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

EPISODE SUMMARY

Kathryn Paylor-Bent has a lot of wisdom to share and we cover a lot of ground in this conversation. We talk about her experiences as a disabled woman, wheelchair user, and the CEO of two successful businesses. She uses her disability as inspiration for her successful career as an adaptive fashion designer and as a consultant to other organizations.

She shares her experiences with ableism, including medical and digital ableism like shadow banning on social media and examples from her personal life. In light of some of these negative experiences, she also shares solutions as an advocate and suggests how we can better understand the disability community.  Another important part of Kathryn’s story is being a mother to Tom, her son with autism and mental health challenges.  She shares her vision for Tom’s future as well as the future of other young people with disabilities through her business Seated Sewing.  

For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/rpJslXjawTk

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TRANSCRIPT

[00:00:00] Kathryn Paylor-Bent: Nothing for us without us. If you are designing something for the disabled community or opening a shop, then don’t assume what we need. Come and talk to the disabled community. Come and let us tell you firsthand what it is that we need. 

[00:00:24] Carole Blueweiss: Kathryn Paylor-Bent should know. She was once a nurse and non-disabled. Now, she is disabled and a permanent wheelchair user, which doesn’t stop her from living a full life. She travels, mothers, paints and sews, and she is the CEO and founder of two successful businesses. One is called Consult Seated. This organization allows Kathryn and other disabled experts to help other businesses with accessibility and inclusivity in both digital and physical spaces. Her other business is called Seated Sewing. There she is the chief seamstress and designer. She sews clothing for people with any disability, anywhere in the world. Kat is married to Nathan and they are both the proud parents of their teenage son, Tom, who was diagnosed with autism at about seven years old.

[00:01:16] Kathryn Paylor-Bent: We had known for a long, long time that there was something not quite right, but any time that it was raised, we were always given the reason that it was my disability that was causing Tom’s issues.

[00:01:32] Carole Blueweiss: It’s hard to wrap my head around the idea that somebody would accuse a mother of causing their child’s disability. And yet that is exactly what happened to Kathryn. If I hadn’t heard it from Kathryn in her own words, I would not believe the story. Stay tuned. I also want to express my appreciation for Kathryn because she expresses so much from her point of view, which is a very unique and important point of view. Unique in the sense that she was once non-disabled and now she’s disabled. Two, that she’s the mother of Tom who has autism and three, because she’s on a mission to speak out against what she considers systemic misunderstanding of people with disabilities and a lack of effort by many, not all, to try to understand and include disabled people in policy and community decision making. Nothing for us without us, that sums it up.

[00:02:28] Kathryn Paylor-Bent: Ableism is its name. And it’s where people who are without disability assume they know what is right for us. It’s very common in society. It’s very common in design and it’s not always done out of malice and badness. It’s done out of lack of education. It’s a sad state of affairs if we can’t get it right by just having open and honest conversations with the community.

[00:03:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents and children are the experts and where connection inspires change. My name is Carole Blueweiss. And today I have as my special guests Kathryn, the CEO and founder of Seated Sewing, her son, Tom, and their dog, Shadow.

[00:03:24] Welcome, Kat, to Wisdom Shared. 

[00:03:26] Kathryn Paylor-Bent: Thank you very much. It’s lovely to be here. 

[00:03:30] Carole Blueweiss: Tell us about the name of your company. 

[00:03:32] Kathryn Paylor-Bent: My company’s called Seated Sewing. I’m all the way over in the UK. Not far from Scotland, north of England, over in Durham. I was on a sewing retreat with a designer in the UK. And I had explained that I’m disabled and a wheelchair user.

[00:03:50] I couldn’t find the clothes that I wanted. So I used to make my own, and I said I wanted to turn it into a business. So we spent the weekend throwing ideas around and we wanted it to reference the wheelchair in some way and my passion for sewing. So over the weekend, we came up with Seated Sewing.

[00:04:11] Carole Blueweiss: What happened that puts you in a wheelchair? 

[00:04:14] Kathryn Paylor-Bent: 15 years ago, I picked up my son who was only six months at the time, out of a playpen. And I herniated a disc onto my spinal column, which needed emergency surgery, but the surgery actually went wrong and damaged my spinal column instead of fixing it. I spent nine months in hospital with them trying to fix things. I ended up with multiple infections and, unfortunately, it couldn’t be repaired. And I ended up as a wheelchair user. 

[00:04:47] Carole Blueweiss: Do you have use of your legs at all? 

[00:04:50] Kathryn Paylor-Bent: I have got use of my right leg. My left leg, I have no feeling, no sensation, because they don’t get the proper signals to them due to the nerve damage that was caused. So, my chair is my legs now. 

[00:05:07] Carole Blueweiss: I usually try things on standing up. How does it work for someone in a wheelchair? 

[00:05:11] Kathryn Paylor-Bent: It’s quite challenging because shops aren’t really set up for wheelchair users to try on clothing. Fitting rooms tend not to be large enough. We might be able to get a chair in, but actually being able to turn, being able to have a carer come in and assist you, there tends not to be that space. So, a lot of our shopping is done online and we’ll try on at home. I used to go out for shopping days with my friends in the old days, and we’d be trying all sorts on and pulling outfits. That doesn’t happen anymore. Shopping is just something, very much like food shopping, it’s done online. It’s delivered to the house and we deal with it all in house. So it is not great. It’s not fun. And there’s certainly not clothes out there that are suitable for people that sit all day. 

[00:06:05] Carole Blueweiss: How did you learn how to sew? 

[00:06:09] Kathryn Paylor-Bent: My grandma, my mother’s mom. She was a seamstress and she made dresses for everybody. If there was an event, then Grandma would be making you an outfit for it. And I just vividly remember her house always had the sewing machine on the kitchen table. There was threads everywhere. There was fabrics everywhere. If you had any questions, if you weren’t sure, you went to Grandma, ’cause she’d be the one that’d be able to show you how to fix something.

[00:06:38] And my very first sewing machine was a little Singer that actually it wasn’t even electric. It had a little handle you had to turn. So my mom could sew as well. And it’s always just been in the family. Just something that we grew up with, you could sew and you could knit. And it sort of went from there. And I think the fact that I’m 5’11” and the child of the seventies, we didn’t have tall ranges. So I had to make a lot of my clothes because my legs and my arms were too long for traditional shopping. It’s not something that was new to me when I became disabled. It had always been in my life. And yeah, just, I just had to think of it in a completely different way. And so that’s been fun. 

[00:07:31] Carole Blueweiss: Now, do you make all your clothes?

[00:07:35] Kathryn Paylor-Bent: Not all of them. I normally wear maternity pants because they fit really well if you’ve got a colostomy. They sit lower. So around the house, I’ll just be in maternity wear because it allows my bag to grow, my catheters to sit right. But if we’re going out to an event, then I have a lot of clothes that I have made myself. They are what my going out clothes would be. But everyday stuff, no, I just wear maternity clothes. 

[00:08:07] Carole Blueweiss: Can you tell us a little bit about clothes that are suited for you? 

[00:08:11] Kathryn Paylor-Bent: The problem with sitting all day is clothes are designed by the designers to be stood up in, to be walked in, to be showcased standing. And they never think about the practicalities of sitting. So one of the problems, for example, with trousers is when you’re sat all day, you actually need your waistbands to be in a completely different position. So they need to be lower at the front and higher at the back. Otherwise we end up with this very drafty back.

[00:08:45] If you get too much material just sat against your body, it can rub and you can get really bad pressure sores and irritations. So the whole dynamics of how you design clothes is completely different for somebody with a disability or who is sitting all day long. 

[00:09:06] Carole Blueweiss: There are different disabilities that also, I’m guessing, different specific modifications.

[00:09:15] Kathryn Paylor-Bent: Yes. For example, I’ve got catheters and feeding tubes, so I need to be able to access those. So I’ve got clothing that instead of having a central zip at the front will have a zip either side. And it’s sort of like a flap that comes down. Very much baby drawers really, just in a different, more fashionable cut. But it’s very much going back to thinking about how changing nappies on babies and that sort of access that you would require, we need it in our clothing as well. Elastic and things like that has, and fabrics as well have changed so much in the last 20 years even. It’s not just disabled, it’s elderly, it’s infirm, it’s older generation. They all benefit from having accessible clothing. 

[00:10:09] Carole Blueweiss: Are there any stores in the world that you know of that actually focus on this population of people with disability?

[00:10:18] Kathryn Paylor-Bent: No, not a mainstream store, there isn’t. I do know that Tommy Hilfiger has an adaptive range. Tommy Hilfiger Adaptive because he’s got a child that has a disability. 

[00:10:32] Carole Blueweiss: How do you find Tommy Hilfiger’s clothes? 

[00:10:35] Kathryn Paylor-Bent: I haven’t personally tried them. I am aware of them because of the networks that I’m involved with. I do quite a bit with Open Style Lab, which is a US-based advocacy service, who I’ve been doing some work with recently. So it was one of the ladies on that that I was talking to. She uses them ’cause she’s got dwarfism. They’re perfect for her because the kids clothes are fashionable and funky. And she loves them. From my understanding, is that he covers a wide base of disabilities, but I haven’t personally been to any of the stores to have a look.

[00:11:16] Carole Blueweiss: If Tommy Hilfiger were listening to this podcast, what would you like him to know?

[00:11:24] Kathryn Paylor-Bent: I’d really like him to know that there are adaptive designers out there who are working really, really hard in the field, but are so unseen at the moment. And because he has an adaptive range and because he’s got disability in his family, he has got the power to collaborate with us, to shine a light on what we do, and to make a bigger noise in the sector than is being made.

[00:11:56] He needs to invest in the little people and he needs to bring them along on the journey. And open his range up because it’s very specific at the moment and it covers a limited number of disabilities. So open it up, be more inclusive, be more size inclusive. And come work with us. There’s some amazing designers that have got some fantastic ideas, but our voices just aren’t heard in the mass huddle which is fashion.

[00:12:29] Carole Blueweiss: I guess it’s more fun and more economical for you to make your own. 

[00:12:33] Kathryn Paylor-Bent: Yeah, I do like just to make my own. And it’s price point as well. We’re heading to London for the week after next. So I’m hoping that we can pop to his London stone and have a browse and see what there is.

[00:12:49] Nothing for us without us. 

[00:12:53] Carole Blueweiss: Tell me what that means to you. 

[00:12:55] Kathryn Paylor-Bent: If you are designing something for the disabled community or you’re bringing a range out or opening a shop, then don’t assume what we need. Come and talk to the disabled community. Come and let us tell you firsthand what it is that we need. And it will succeed. Where we have a problem is where people assume that they think they know what it is that we need, or what would be suitable, without doing proper research or having proper dialogue with a community, and then expecting us to just go, oh, lovely, thank you very much. 

[00:13:35] Carole Blueweiss: You experienced that? 

[00:13:38] Kathryn Paylor-Bent: Yeah, quite quite a lot. Ableism is its name and it’s where people who are without disability assume they know what is right for us. It’s very common in society. It’s very common in design. And it’s not always done out of malice and badness. It’s done out of lack of education, but we’re in 2022 now. It’s a sad state of affairs if in 2022 we can’t get it right by just having open and honest conversations with the community. 

[00:14:15] Carole Blueweiss: Can you give some examples? 

[00:14:19] Kathryn Paylor-Bent: For example, digital ableism is something that we’re impacted with quite heavily on platforms like Facebook and Instagram, because they changed their algorithms in 2018 to protect the disabled community from trolling and hate speech, which is very admirable of them. But in doing that, the consequences were it’s actually heavily affected our reach and what we can talk about as a community. So anything that mentions disability or health conditions, medical procedures or devices, is really heavily controlled. And so if anything like that’s mentioned, our posts are banned, our adverts aren’t allowed.

[00:15:11] And so in their way of trying to help us, it’s actually caused a lot of problems for us. My understanding is they will have put a bunch of words into their computers and said, if it says this, we can’t have this. If you say this, this can’t happen. But across the board, that means there’s a swarth of the community that can no longer talk about things that up until then were fine. We can’t beat the algorithm. 

[00:15:43] A better example was when I had my peg fitted, I was in hospital and I was documenting my journey all the way along, but anything that actually showed the peg – not that I was showing anything gruesome – I was literally showing a bit of plastic. Or anything that referenced why I needed it due to condition, those posts were not allowed, they were banned. So it would come up straight away saying that there was an error and you couldn’t post them. Or there’s something called shadow banning where they will suppress your reach. So if you regularly get a thousand people looking at your post, they would suppress it down so maybe only 20 or 30 would actually see it. I’ve known people that have been shadow banned for months. So yeah, it’s really difficult to have free speech when you’re talking about your everyday life. I’ve had photos of me and my wheelchair that have been banned. I’d love to not show my wheelchair, but my wheelchair’s my legs.

[00:16:50] So it’s like, how do I document what’s happening in my life and show how I live and how I get around being disabled and make a go of it when I can’t actually, because a computer is telling me I’m not allowed, or AI is telling me I’m not allowed. 

[00:17:12] Carole Blueweiss: It’s shocking and scary. I never even considered that. That’s one of the reasons I want to make my podcast, which makes maybe podcasting that much more powerful because not yet anyway, no one is – 

[00:17:24] Kathryn Paylor-Bent: Shadow banning. 

[00:17:25] Carole Blueweiss: No one’s shadow banning podcasts yet. 

[00:17:28] Kathryn Paylor-Bent: And that’s the beauty of LinkedIn as well. LinkedIn allow us to show our pictures, to talk about what we’ve got, and there is no issue on there. So there’s a lot of disabled activism that is happening on LinkedIn because it’s allowing free speech and open conversations about it. 

[00:17:48] Carole Blueweiss: This started with the idea of that quote, saying nothing for us without us. So you’re saying that Facebook, for example, could have sat down with a bunch of people with disabilities and asked how can we serve you as opposed to just banning everything?

[00:18:05] Kathryn Paylor-Bent: Yeah, exactly. Just having the conversation. Hands up, there are some extremely vulnerable people within our community. So the reasoning for doing it, fully understand, but there’s also some people who aren’t vulnerable and who are up for taking on the challenge and supporting others. And it’s those people that I think are, and I’d class myself as one of those people, who are willing to take on the conversations that people don’t want to have.

[00:18:38] We’re willing to have the discussion and explain ableism. Or explain anything that people want to ask us. And it would’ve been nice to have that opportunity rather than the blanket of, well, you know, you’re disabled, you’re vulnerable. I don’t class myself as a vulnerable member of society. 

[00:19:00] Carole Blueweiss: That brings up that idea that all disabled people are to be pitied, so to speak, even without the conscious realization that you’re doing that. Even out of a good heart, however, it’s not a positive outcome for the people who are disabled. And there has to be that understanding, well, why? Right? You might think you’re saying something kind, but in actuality it’s quite caustic, right? 

[00:19:25] Kathryn Paylor-Bent: Yes. Yeah, very much so. 

[00:19:29] Carole Blueweiss: What does that mean to be vulnerable to these trolls? What’s the danger? 

[00:19:33] Kathryn Paylor-Bent: So everyone always likes to give the disabled community advice. Have you thought about drinking green tea? Have you thought about having a bit more sunlight? That will solve your problems. And it’s like, okay, thank you. But we don’t need that. Or people would say things that they knew were offensive, they knew were just the wrong things to say. And if you are getting that over and over and over again from complete strangers who have no idea about your situation, your mental health, your condition, it really starts to affect you.

[00:20:10] And people have really badly hit with depression. There’s been suicides and it’s wrong and it’s really bad. But there is a section of the community that actually thrives on this trolling and causing people hurt and pushing people to the limits. And that is what they were trying to prevent, which that’s right. There should be some controls over that, but at the same time and it might be controversial, but if you’re gonna have a Facebook account and you’re gonna put yourself out there, there is a certain part of it that you have got to be prepared for criticism. You’ve got to be prepared that what you say, people don’t like, and if you are not prepared to accept what people’s comments, are you really strong enough to have an account like that? Or at least an open account that’s open for anybody to see.

[00:21:16] Carole Blueweiss: Tell us about your son. 

[00:21:19] Kathryn Paylor-Bent: My son is 15 now. And he is diagnosed autistic, ADHD, comorbid anxiety, and he has severe mental health challenges. We’re in that glorious puberty age, which is a nightmare anyway. And then a bit of neurodiversity, it’s fun. Very fun. So we’ve currently got a 15-year-old who’s six-foot-four, but actually has a learning age of a 6-year-old.

[00:21:54] And it is very frightening and scary because he doesn’t want to be a big boy. He doesn’t feel like he’s a big boy, but his body is doing otherwise and saying otherwise. And so we are dealing with all of that. The grieving of not being a little boy, even though he still thinks that he is, and just him not understanding what is happening to his body and why is it changing. Yeah. So, that’s difficult at the moment for him. 

[00:22:22] Carole Blueweiss: How old was he when he was diagnosed? 

[00:22:26] Kathryn Paylor-Bent: He got his official diagnosis at seven. We had known for a long, long time that there was something not quite right, but any time that it was raised, we were always given the reason that it was my disability that was causing Tom’s issues. Not only are you trying to adjust your head to yourself being disabled, you’re then sat there with all the guilt of my child is behaving in this way because I’m disabled. So actually that’s my fault as well. 

[00:23:00] Carole Blueweiss: Wait, whoa whoa whoa whoa whoa. Let’s just back up on that for a second. For a moment, did you believe that?

[00:23:08] Kathryn Paylor-Bent: Yeah, because all the professionals were telling us that. We’d raised it when he started nursery and then he went up to school. We’d raised it, consistently raised it, and all of the professionals always came back and said, he’s an only child and you’re disabled. He’s with adults all the time. So he was used to only being around adults.

[00:23:36] So the excuse for his very, very advanced, I mean, he spoke like a gentleman at the age of three. His speech was way beyond what a normal three year old was, but we were told, well, he spends a lot of time with your dad and your dad’s very eloquent. There was always an excuse. There was always an excuse of it’s ’cause mom’s disabled.

[00:24:00] We believed it for a long, long time. Over here, we’ve got teachers called SENCos, so there’s special needs coordinators in the school. And the idea is they’re the specialist in the school. So if your child has a special need, they would pick up on it and they would bring all of the extra professionals in to help you.

[00:24:21] So he was in the SENCo’s class for a full academic year. She never picked up on the fact that he had any condition. She just classed him as a dreamer, as a loner. And it was blamed on us again, it was bloomed on my disability. 

[00:24:39] Carole Blueweiss: Wait, but wasn’t he in that class because they noticed something? 

[00:24:44] Kathryn Paylor-Bent: No, that was an educational psychologist had come into Tom’s class to meet another child who was going through the process of getting a diagnosis. And he walked straight in and went to Tom, assuming Tom was the little boy he was going to meet. Because he hadn’t met anyone in the class. And the teacher’s like, oh no, you’re not here to see Tom, you’re here to see whoever. And he says, well, when am I seeing this little boy? And the teacher said, oh, there’s nothing the matter with him.

[00:25:12] His mom’s disabled. He’s an only child. And she give the whole da, da, da. And he turned around and he said that little boy’s got autism. And she’s like, no, no, no, no, no. He’s fine. And he said, I’d like to do an assessment, just to prove you’re right. And he went for assessment and he aced all of it.

[00:25:32] And he came out, it took three years of going through assessments because the process in the UK is not fast. But yeah, it was the biggest sigh of relief I think we’ve ever breathed because finally we understood that it was nothing that we could have done being parents. It was nothing to do with the fact that I was disabled. This was a condition that we had no control over. And the relief from just getting that diagnosis was unbelievable. 

[00:26:09] Carole Blueweiss: If I heard this story secondhand, I would not believe it. 

[00:26:13] Kathryn Paylor-Bent: Right, yeah. 

[00:26:13] Carole Blueweiss: So given that story, that seems to me a lot of ignorance and a lot of blaming and a lot of prejudice. I’m sure there’s a more sophisticated word for people in wheelchairs. To have that blame put on you in your case, it was in your face because you had a concrete situation, but what does that mean for other people that are disabled in your community, how they’re looked upon? 

[00:26:41] Kathryn Paylor-Bent: It’s very true. And the sad thing is that we are now seven years on from Tom getting his first diagnosis and nothing has changed within the whole setup. Once we knew it wasn’t us, it lit a fire under us that we were going to fight as hard as we could to get Tom in the right educational setting with the right teachers. And we fought hard because we met a lot of parents and heard a lot of stories. And the stories aren’t changing, the narrative has not changed. Children here are still not getting the diagnosis early enough. Parents are still struggling with this. You’ve got a badly behaved child, or it’s your family situation.

[00:27:33] And it’s just heartbreaking because I know how much credence we put on what professionals were saying to us because they are the professionals. And you tend not to question them because you think this is their job. They see it every day. They know what they’re talking about, but we’ve learned that that is not necessarily the case.

[00:27:56] And actually, if something doesn’t feel right, you are well within your to question it. We went as far as going to court to make sure Tom got into the right school, because we knew that where he was was damaging him. We’ve had Tom be suicidal from about seven and a half, eight. And we are very tuned into how education settings or people affect how he is and how he reacts.

[00:28:27] And we knew what he was entitled to. And we took it all the way to court because there was no one saying that he couldn’t have it. So yeah, we’ve spent a lot of time fighting. We will fight until the day we die for both myself and for Tom and the community, because it’s not right. There is a lot of ignorance, but there’s a lot of ignorance and people aren’t interested in learning how to change.

[00:28:58] And that’s the sad thing. Especially in this area, we’ve got a huge problem with child mental health services. We don’t actually have beds in our area for any child that would have to be hospitalized. So a couple of years ago, Tom made an attempt on his life, which automatically you get pulled into all the crisis teams that come in and there was talk of him having to be admitted to mental health hospital, but there are no beds where we live.

[00:29:31] Carole Blueweiss: No beds or no beds available? 

[00:29:34] Kathryn Paylor-Bent: No beds in our area. None. They closed the hospital down. So Tom would go to the next available bed in the country. It could be anywhere in the whole of England. Couldn’t get my head around – first of all, the fact that he’d have to go somewhere is traumatic enough, but the fact that I’d be putting my son in a car with a stranger to drive four hours south, six hours south. I wouldn’t be able to visit every day. That would be impossible. And I’d just have to trust that he was safe and well. It blows my mind that it’s even deemed as a solution. It’s like it can’t, how? But yeah, Durham has no beds for children with mental illness. None at all. Our closest is an hour and a half south. It’s a very, very broken system in the Northeast of England for child mental health services, unfortunately. 

[00:30:38] Carole Blueweiss: What ended up happening? 

[00:30:41] Kathryn Paylor-Bent: We’re very fortunate that his psychiatrist worked with us to keep him safe and to keep him at home. It has been a very difficult 18 months, and we’re not naive enough to think that it’s a never, because the way that he is, it’s gonna be an if rather than a when with Tom, because he is so unstable. But for as long as we can keep him at home as safe as we can, then we will. We’ll fight hard. 

[00:31:11] Carole Blueweiss: How has this affected the relationship with your husband? 

[00:31:15] Kathryn Paylor-Bent: He is an absolute rock, honestly. He has stood by everything. He’s been there when I’ve been on life support. He’s been called in a hospital when I’ve had seizures and he’s been told to come and say goodbye. He’s been to every appointment that either myself or Tom’s had. And we’re a team. He’s neurodiverse. So he’s currently on the adult pathway for autism because as Tom grew and the more he presented, the more he saw a lot of himself in Tom, and it would not surprise me at all. If he gets a diagnosis. 

[00:32:00] It has affected Nathan. It has impacted him. He’s had depression for a long time. He did try to become my sole carer and it didn’t work well. He needs to be able to go to work, to have different conversations, to take his mind off things. Because home life can be pretty intense at times. But we found a way that works and yeah, we just take it a day a time and we’ve got through the day, it’s like, great. Okay, we’ll have a sleep and we’ll try again tomorrow. 

[00:32:34] Carole Blueweiss: I wanna go back to your sewing business and how having your son and your sewing business, if there’s been any kind of sewing for him? 

[00:32:43] Kathryn Paylor-Bent: Yeah. So, there has. I’m banned from making clothes for him because he’s a teenager now, so that’s not allowed. But he’s very sensory and reacts really well to weighted items. So I’d started making like little sausages that would go around his neck, just to keep him grounded. And it grew from lap pads into weighted blankets. So that’s one of the things we provide at Seated Sewing is we will make a weighted blanket that is 10% of your body weight, which is the best ratio. And we’ll make that in whatever fabric you like.

[00:33:26] If there’s something that we don’t stock, we’ll source it for you. And then the backing of them is always some sort of sensory material. So it’ll be a Teddy bear fleece. It’ll be whatever the person wants, really. 

[00:33:40] Carole Blueweiss: How do they describe to you what they need? Or if somebody wants to order something? 

[00:33:44] Kathryn Paylor-Bent: It’s a bespoke service. We’d have a conversation with them because it is so bespoke, it would involve them either coming to me or me going to them so that we can measure them and make sure that we’ve got all of the measurements that we need from them. If it’s for a wheelchair, we need the length of their leg and what their position is that they’re lying in or sitting in. 

[00:34:08] Carole Blueweiss: When you say bespoke, what does that mean?

[00:34:11] Kathryn Paylor-Bent: Bespoke is it’s made specifically for you. So it is to your fabric choice. It is made to measure for you and your requirements. 

[00:34:23] Carole Blueweiss: And could somebody do a Zoom session with you and have someone else take measurements? 

[00:34:28] Kathryn Paylor-Bent: Certainly. I have a program on my computer and because we are able to screen share with Zoom, I can show them exactly on a little dummy where I need the measurements. And if there’s somebody in the room with them that can take the measurements, then we can certainly do it that way, yeah. The pieces that we make are specifically made for the person. 

[00:34:52] Carole Blueweiss: Have you approached designer labels and stores outside of England or a network of other designers with your talent and so forth?

[00:35:01] Kathryn Paylor-Bent: I haven’t. I’m starting to become more vocal about it. I was speaking to a designer earlier and like, I really struggle just nominating myself for things or shouting about it or saying, come on guys, you need to look at what I’m doing. So we are gonna be working on that. We’re gonna try because of the perspective that we come from and life experience, we’ve got a very unique selling point. And I think I just need to be braver with getting out there and shouting about it. 

[00:35:33] Carole Blueweiss: And when you say very unique, what do you mean? 

[00:35:37] Kathryn Paylor-Bent: The fact that everything that we sell are things that our family uses on a day to day basis. So we sell weighted blankets. Well, that’s because my son’s got autism. We sell peg protector pads that can be used for feeding tubes or catheters because I use them every day.

[00:35:57] The hospital packs have been put together that contain everything you would need for a comfortable night stay if you were going in for surgery, or if you had a loved one in hospital. That’s come over years and years of experience. I have a hospital bag that’s packed 24/7. It’s just a go bag. We’ve done a lot of research and development on the sort of fabrics that work better.

[00:36:21] I don’t think many brands can put the hands up and say, actually we use our products every day. And this is how we know they work. It suddenly doesn’t work, we’d go back, we’d redesign it and we try it ourselves before anything comes to market.

[00:36:42] Carole Blueweiss: Do you have anyone in your life who’s been an inspiration for you? 

[00:36:47] Kathryn Paylor-Bent: I think I take it from a lot of people. My husband is an inspiration, just the fact, the stickability and what he’s been through and seen and had to deal with and how he copes with that on a day to day basis is mind blowing. I like to take inspiration from lots of different people.

[00:37:07] For example, Isaac that I made an outfit for. He was born without any arms and very short legs, but there is nothing that has stopped him. He’s been skating, he’s been skydiving. What that man hasn’t done is just immense and you think of anyone, you’ve got a perfect excuse to stay home and do nothing, but he’s like, why should I? This is my life. I wanna live it. And just that passion for getting out and adventures and trying new things and not letting anything stop you, I think is extraordinary. Being around people like that has shown me that anything’s possible. 

[00:37:53] Carole Blueweiss: What do you do to take care of yourself? 

[00:37:57] Kathryn Paylor-Bent: I love sewing just as a hobby. I do it as a business, but then I love it if people like friends and family will come and ask me to do little projects. I also do a class of watercolor painting. So it’s just once a week for an hour and a half. And the doors get closed. The boys go upstairs and do what the boys do. And I’ve just got my room to myself and I can just paint. So it’s a lovely switch off. I really enjoy it. 

[00:38:28] Carole Blueweiss: Show me your sewing machine.

[00:38:31] Kathryn Paylor-Bent: I’m already prepped in my chair, so we didn’t have to do another transfer. 

[00:38:37] Carole Blueweiss: You have two wheelchairs? 

[00:38:38] Kathryn Paylor-Bent: Yes. I’ve got a big electric chair, but I’ve come in my self-propel one this time. So I’m just wheeling myself over to the other side of the room and it’s all set up. And I do this. It’s a big industrial thing. [whirring sewing machine sounds]

[00:38:58] So, this is what you’d normally see in a factory, but ’cause I do so much sewing, I’ve got an industrial sewing machine. This is a lap pad that I’m making for a gentleman in some funky retro Herbie fabric. 

[00:39:12] Carole Blueweiss: What is your dream for your business? 

[00:39:15] Kathryn Paylor-Bent: Ultimately, I want to get it to the point where we can open it as they’re called CICs here. It’s a bit like a charity. So that we could run apprenticeships for children like Tom. So he has a career, but then open it up to others within his school who are needing apprenticeships and skills and have a passion for sewing. We really want to get to the point where we have enough business coming in so that those children can be taught how to sew and they can turn out beautiful products and we run them through an apprenticeship or we run it as an enterprise.

[00:39:55] So that. If they’re really happy with just staying with sewing, then they can do that. But if they’re like the more techy side and they wanna be more website driven, then they can do all of the technical bits that I don’t really understand. 

[00:40:12] Carole Blueweiss: Would these people get paid?

[00:40:16] Kathryn Paylor-Bent: Yeah. Over here an apprenticeship, they get a small allowance while they’re learning. So it would involve them going to college while also coming to us. And then once they have passed that to whatever degree, even if they don’t pass, it doesn’t matter because if they’re really good at just sewing blankets, then we happily pay them to just sew blankets. We just want them to have a job and feel like they’re useful. And it’s something they can do. 

[00:40:45] That’s our long term goal that we will be able to scale up to a point where we can offer that to Tom and whoever else is interested. It doesn’t even have to be neurodiverse. It will be somebody with a disability of some sort, whether that be mental or physical. That’s our unique selling point is we are disabled and we are doing it for other disabled.

[00:41:10] Carole Blueweiss: I know here in the United States, people are always interested in when their children get older, what are some options? 

[00:41:15] Kathryn Paylor-Bent: Yeah. 

[00:41:16] Carole Blueweiss: And I think people will be inspired by your idea. 

[00:41:20] Kathryn Paylor-Bent: We know we’re having to start and think about for Tom. So it’s like, there’s not just gonna be us in the Northeast who’s got a son like that who don’t really have anywhere else we can send them all or things that they’ve got an interest in, but if it’s something that they can develop, then great. Yeah. 

[00:41:43] Carole Blueweiss: Sure, a skill. 

[00:41:46] Kathryn Paylor-Bent: Yeah. 

[00:41:46] Carole Blueweiss: Feeling needed and productive. 

[00:41:50] Kathryn Paylor-Bent: Just to feel valued and that their life actually does have a lot of meaning and it’s worth getting up every day for, because if, once you lose that, it’s very, very difficult to get it back. And we know firsthand how hard that is. And through all of it, if Seated can help one family have an easier journey through either getting an autism diagnosis or becoming disabled, then we’ve done what we’ve set out to do.

[00:42:28] Carole Blueweiss: I interviewed Kathryn a second time because I saw on LinkedIn a post saying that she was in the hospital. And so I was concerned and I wanted to know what was happening. So once she was home, we got in touch with each other and she agreed to talk to me on Zoom again. And she told me her story, how she went to a movie theater and there was no wheelchair access other than the very front of the theater. So she was seated in front of the front row. Now, if you’ve ever been in a movie seated in the front, you know what it’s like, where your neck is extended backwards and your head has to look up. After a while, Kathryn felt some numbness and then tingling through her right arm. And eventually her arm felt completely numb.

[00:43:18] So she went home, hoping it would go away. But when it didn’t, she called the hospital, described what was happening and they were concerned it might be a stroke. So they sent an ambulance right away. She was waiting in the hospital 12 hours before she was put into her room. And before she had her first CAT scan. Two weeks later, she was finally discharged and she got her tests back. And what was the result?

[00:43:44] Kathryn Paylor-Bent: The results were I hadn’t had a stroke, which is exactly what we had thought. I’ve got more degeneration in my neck and I’ve got bulging discs, which have been pressing on nerves. 

[00:44:00] Carole Blueweiss: And did they listen to you when you said it potentially could be because of your spine situation and that you were just at the movies?

[00:44:07] Kathryn Paylor-Bent: No. No. So what they, even after they said, well, maybe it’s not a stroke. They decided that it may be something called FND, stands for functional neurological disorder. I was told that if I went home with a positive mindset, then I would probably get the use of my arm back. Just think positive and get over it. And use it. And I’m like, well, I’d love to, but it’s not working. I can’t, like come on, guy. 

[00:44:42] Carole Blueweiss: So at any point, did they call in physical therapy? 

[00:44:46] Kathryn Paylor-Bent: Yes, I had a physio that came to see me on the ward. All that they kept writing in my notes is that I’d made great progress. Their definition of great progress was I’d had some flicker in my muscles and I got to the point I could move my fingers. That was proof that it was FND ’cause I’d got some movement back. Because I got a lot of questions, like have you had any trauma? Are you upset? Are you in a rough period in your life? And I’m like, no, I said. And the assumption was quite funny. 

[00:45:21] I’m quite used to it now for medical doctors. So they obviously see my wheelchair. They know that I’ve got spinal injury and the assumptions that are made straight off without speaking to me. So the consultant came in and he said, so what do you do? And I says, well, I run two successful businesses and he just looked and he went, you run businesses? Yes. And I said, actually I drove us to the cinema. You can drive? And I said, look, I might be in a wheelchair, but that doesn’t mean that I don’t do things and I haven’t got a life. I do. And I’m quite capable, I think. Don’t make assumptions about me. [dog barking]

[00:46:10] Carole Blueweiss: Was that your dog in the background that I was hearing?

[00:46:13] Kathryn Paylor-Bent: Yes. She hears the gate open before we even know there’s someone in the garden. So she was warning us. She’s called Shadow and she is a black cockapoo. And we got her after we’d done some training with a UK charity called Dogs For Good. There’s a very big waiting list to get service animals in the UK.

[00:46:38] And they’re really expensive. So you need to do a lot of fundraising to raise the money for them. Dogs For Good were also running a program where they would teach you how to train your own dog to be a service dog. And then on the very last day of the course, I got a call from one of my best friends who said, I think I found a dog that will work for training and it turned out to be Shadow.

[00:47:04] We have trained her to be Tom’s autism assistance dog. And she goes everywhere with us. She’s got a little jacket that says that she’s a service animal. She’s been on the London Underground this week. The only thing she hasn’t done is been on an airplane, but we’ve had her on ferries and everywhere we go, she comes with us. And she’s absolutely opened up our life because Tom, for a long time would run. If he got very worried and stressed, he would just run. We have a harness that we put around him so that he’s in charge of the dog. And Shadow was trained that if she felt that he was gonna start and run, she’d just sit down. And that would stop him from running. We’ve also trained that when he is upset, she goes and she licks the tears away from his face or gives kisses.

[00:47:59] Also, if he’s really agitated, we can sit her on top of him and it’s like a weighted blanket really, but just the interaction and having to stroke her and having to concentrate on the dog for a little bit can be enough to bring him out of whatever meltdown he’s in. So she’s amazing. She’s absolutely a fantastic little animal. We got her socialized and happy around other animals, but then when she puts her service coat on, she becomes a different dog. She knows she’s working. She knows she’s got to stand by our side.

[00:48:39] Carole Blueweiss: And does Shadow help you, too? Tell me a little bit about your relationship with Shadow. 

[00:48:44] Kathryn Paylor-Bent: She’s technically Tom’s dog, but actually, yeah, she’s Mom’s dog, really. We haven’t trained her to help me in any way, but she has instinctively picked it up. If my blood sugars drop, she comes and warns me. She licks me and she warns Nathan. If I’m about to go into a seizure, she warns us. But this isn’t something we’ve trained her for. This is just something that instinctually she knows, and she understands, and it’s really bizarre, but yeah, she’s a life saver.

[00:49:20] Carole Blueweiss: Can I meet her? Is she in the room? 

[00:49:21] Kathryn Paylor-Bent: Yeah. Shadow! Shadow, come on, come. Oh, she’s up with Tom at the moment. 

[00:49:32] Carole Blueweiss: Can I meet Tom? I would love to meet Tom. [dog barking] Hi, Shadow. Do you do Zoom, Shadow? [dog barking]

[00:49:47] Kathryn Paylor-Bent: Here’s Tom. 

[00:49:48] Carole Blueweiss: Hi, Tom. 

[00:49:48] Tom: Hello. 

[00:49:49] Carole Blueweiss: Hi, my name’s Carole. 

[00:49:51] Tom: Hello, Carole. 

[00:49:52] Kathryn Paylor-Bent: I’ve been doing a podcast with her and talking about some of the challenges of being autistic and some of the ways that Shadow’s been helping you as well. 

[00:50:02] Tom: Oh, lovely. 

[00:50:04] Kathryn Paylor-Bent: So what sort of things can Shadow do for you, Tom? 

[00:50:08] Tom: Well, she can shut me up. 

[00:50:09] Kathryn Paylor-Bent: Mm-hmm, what does she do if you’re sad? 

[00:50:12] Tom: She licks me. 

[00:50:13] Kathryn Paylor-Bent: Yeah. 

[00:50:14] Carole Blueweiss: Tom, how old are you? 

[00:50:16] Tom: 15. 

[00:50:17] Carole Blueweiss: And what do you like to do for fun? 

[00:50:19] Tom: Play video games. 

[00:50:21] Carole Blueweiss: What’s your favorite video game? 

[00:50:22] Tom: Oh, couldn’t tell you that. 

[00:50:25] Carole Blueweiss: Do you played a lot of different ones? 

[00:50:26] Tom: Yeah, a lot of different ones. 

[00:50:27] Carole Blueweiss: A lot of different ones. 

[00:50:29] Kathryn Paylor-Bent: You like Roadblock and very much into Dr. Who at the moment, which is a UK. 

[00:50:35] Tom: It’s something that Americans wouldn’t understand. 

[00:50:37] Kathryn Paylor-Bent: It’s a UK program, isn’t it? 

[00:50:39] Carole Blueweiss: You can tell that I’m American, Tom, right? 

[00:50:42] Tom: No, I couldn’t tell. 

[00:50:43] Carole Blueweiss: Oh, I’m very American. I’m talking to you from New York. 

[00:50:46] Tom: What time is it there? 

[00:50:47] Carole Blueweiss: That’s a good question. It’s 9:32. 

[00:50:50] Tom: In the morning or evening? 

[00:50:51] Carole Blueweiss: In the morning. 

[00:50:52] Tom: I never understand timezones. 

[00:50:54] Kathryn Paylor-Bent: You’ve been to New York, haven’t you? 

[00:50:55] Tom: Of course I have. 

[00:50:56] Carole Blueweiss: I heard you were recently in London. Is that right? 

[00:50:59] Tom: Yes. 

[00:51:00] Carole Blueweiss: What was your experience in London? What did you do? 

[00:51:03] Tom: It was great. 

[00:51:05] Kathryn Paylor-Bent: You went onto HMS Belfast, didn’t you? 

[00:51:07] Tom: Yeah, it’s a battleship that served in the Second World War, a UK battleship. You probably have never heard of it.

[00:51:13] Carole Blueweiss: No, but tell me about it. 

[00:51:14] Tom: Well, it’s a battleship.

[00:51:18] Kathryn Paylor-Bent: What sort of things does it show you on there? 

[00:51:20] Tom: It shows you the weapons, the med bay, the kitchen. 

[00:51:27] Kathryn Paylor-Bent: Does it show you where they used to sleep? 

[00:51:29] Tom: Yes, it does. 

[00:51:31] Carole Blueweiss: Did you find it interesting or was it boring or what did you think of it? 

[00:51:34] Tom: No, I go there nearly every time we go to London.

[00:51:37] Carole Blueweiss: Do you like things about World War II? 

[00:51:40] Tom: Yes. 

[00:51:41] Carole Blueweiss: If you were gonna tell kids your age about the war, what would you want them to know? 

[00:51:46] Tom: Well, there’s a lot of stories of alliances and betrayal and, well, that’s pretty much it. Certain others don’t agree with me. 

[00:52:00] Carole Blueweiss: What don’t they agree with? 

[00:52:02] Tom: The whole war. 

[00:52:04] Carole Blueweiss: So what do you feel strongly about that you think they should also agree with you?

[00:52:08] Tom: I don’t agree with anyone. I don’t talk with anyone. I don’t trust anyone. 

[00:52:13] Carole Blueweiss: Is it because you’re afraid that they’ll just not understand you? 

[00:52:16] Tom: No, it’s not that. It’s just that I don’t trust people at all. I have major trust issues. 

[00:52:22] Carole Blueweiss: I see. Do you trust your mom and dad? 

[00:52:26] Tom: Mom, yes, but Dad, not so much.

[00:52:28] Kathryn Paylor-Bent: Stop it. I’m not lying, I’m agreeing. Do you wanna say thank you to Carole? And then we’ll.

[00:52:34] Tom: Thank, thank you for letting me talk to you. 

[00:52:37] Carole Blueweiss: Do you have any questions for me? Do you wanna ask me anything? 

[00:52:40] Tom: Can I never come here again? 

[00:52:43] Kathryn Paylor-Bent: You can never come here again. 

[00:52:44] Carole Blueweiss: I just want to thank you. I really appreciate it. You were put on the spot and it really was quite unfair, so I just wanna thank you for just talking to this total stranger without any warning. 

[00:52:55] Tom: No, don’t worry. 

[00:52:56] Carole Blueweiss: And it was really nice to see you with your mom and with Shadow. It really helped me understand your home, because your mom is an extraordinary person. I’m learning so much about how she’s doing her businesses and how she’s coping with a lot of different things. And it’s important that people understand people, right? Like that. To hear the stories. So thank you, really, from the bottom of my heart. 

[00:53:16] Tom: No problem.

[00:53:17] Carole Blueweiss: All right. 

[00:53:17] Kathryn Paylor-Bent: Thanks, Tom. 

[00:53:18] Carole Blueweiss: Bye. That wasn’t fair. 

[00:53:22] Kathryn Paylor-Bent: That’s okay, he’s fine. 

[00:53:26] Carole Blueweiss: But that was nice to see because even in my imagination, you speaking about Tom, I create images in my mind. And they were not at all. 

[00:53:35] Kathryn Paylor-Bent: Not what he’s like. 

[00:53:36] Carole Blueweiss: What I expected, yeah. So it’s really nice to put the two together and just even realize that you can’t really go by description. 

[00:53:49] Kathryn Paylor-Bent: No, and it is really hard to describe. Because there’s so many different facets to him as a person. And yeah, it’s just so difficult to…and you don’t know what you’re gonna get when you ask a question and we don’t. I’m not surprised he said he trusts me and not dad. He has got real big issues with trust. He does trust his dad. It’s just this weekend, he’s not happy with him. So dad’s the enemy at the moment. 

[00:54:16] Carole Blueweiss: So that made sense. 

[00:54:18] Kathryn Paylor-Bent: Yeah. 

[00:54:18] Carole Blueweiss: It’s interesting to me that he can actually articulate that he has issues with trust. 

[00:54:25] Kathryn Paylor-Bent: Yeah. 

[00:54:26] Carole Blueweiss: So he can analyze his own behavior or is it because he’s heard people tell him that? What do you think? 

[00:54:31] Kathryn Paylor-Bent: I think a lot of it is he’s heard over the years, professionals have told him that he’s got issues with trust and it’s very much something that just sticks in his mind. And I think with the education system, he’s been let down a lot. So he’s had times where teachers have moved on and he’s not been warned or they’ll pull students out of his class that he really got on with. And so he doesn’t want to build relationships because he says, well, what’s the point because they’re gonna move. They’re either gonna be taken away from me. So why should I trust them? Why should I get to know them? Why should I make friends if they’re just gonna move on.? He’s very much a solo player of I’ve gotta make sure I just keep myself happy because no one else can.

[00:55:24] Carole Blueweiss: Hmm. There’s a lot of wisdom to that. 

[00:55:27] Kathryn Paylor-Bent: There is. Yeah, he’s a very deep thinker at times. 

[00:55:34] Carole Blueweiss: I could tell by what he said about World War II, that was a very analytic answer. One sentence. I mean, he really summed it up so well in a very sophisticated way. 

[00:55:46] Kathryn Paylor-Bent: Yeah. 

[00:55:47] Carole Blueweiss: Like he gets it. 

[00:55:49] Kathryn Paylor-Bent: Yes, he does. And so much, but he doesn’t trust himself that he understands.

[00:55:56] And it’s trying to get him to understand actually, you know so much more and you are capable of explaining to people so much more than you think you are. But I think for so long in education, he’s been told that he doesn’t understand or he’s not good enough. And so he’s now got this belief that what he knows isn’t important to anybody, cuz no one wants to hear it.

[00:56:22] And it’s like, actually, no it’s really important. And your understanding of the world is really important and people do want to hear it. But sadly, through growing up and the experiences he’s had, he doesn’t believe that. And he doesn’t think it’s true. 

[00:56:43] Carole Blueweiss: Well, he’s taught me a lot, you know, both of you have. And it shows that for those of us who are speaking to people that have differences, the power of listening and the power of allowing who you’re talking to to know that you are listening and that you are interested is huge. In the school system, when teachers have multiple kids, they probably don’t really feel as heard. And then they don’t always have parents like you. But then the parents have to really understand a child that’s very different from who they are. So that takes time, too. There’s a lot of challenges. 

[00:57:21] Kathryn Paylor-Bent: Mm, yeah. And parenting someone as deep thinking as this, it’s fun. It’s fun. 

[00:57:31] Carole Blueweiss: Does he sometimes surprise you with like, oh, I never thought of that. 

[00:57:34] Kathryn Paylor-Bent: Oh yeah. He’ll come out with things and you’re like, Tom, how long have you known that? Or where did you learn it? He’s like, well, I just do, I don’t know. I just knew. Even with simple things like reading, he’ll come out with a statement and he like, wow, Tom, I didn’t know you could do that. And he’s like, yeah, I learned it a couple of weeks ago, but I didn’t think it was important to tell you. If we could unlock this wealth that he’s got going on in his head, he could be the next Einstein. I’m sure of it. 

[00:58:05] Carole Blueweiss: Does he like the sewing? I know you’re training him for your company to do some sewing.

[00:58:09] Kathryn Paylor-Bent: Yeah. He likes the idea of helping others. If he knows that he’s helping others and he can make a difference, then he’s happy. And he gets a lot of joy out of knowing that by doing something it’s made somebody happy or it’s made someone’s day. And that’s the avenue we’re going down, not necessarily the skills, but just reinforcing the fact that he’s on the planet. People love him for who he is and that it doesn’t matter what he does if he’s helping people and making people happy. That’s all we can ask. And the skills will come with time. He just needs to understand that he’s a valuable member of society. And that’s what we’re trying to reinforce all the time is that, you know what? You are valuable. You don’t have to come away with qualifications. All we ask is that you’re happy and you have a passion for learning. And he does. He teaches himself in his own special way. We’ve not had an easy journey, but if people can learn from what we’ve been through, then that’s great. That’s all we want.

[00:59:23] Carole Blueweiss: Thank you so much for sharing with me today on Wisdom Shared., I relish all your incredible wisdom and your experience and your mission to spread all that you’ve learned and empower other people. 

[00:59:35] Kathryn Paylor-Bent: Thank you. Thank you very much for having me. I really enjoyed it.

[00:59:43] Carole Blueweiss: Please check the show notes for more resources and to learn more about Kathryn’s businesses. Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

Episode Summary:

In this episode, we meet Dom Raban, a designer, software developer, and father of Issy.  Issy underwent cancer treatment at age 13. While Issy is now a young adult and cancer-free, the lack of information given to Issy during her treatments prompted her father to create a child-centered app called  Xploro. This amazing app was designed to improve the health literacy of children, to decrease procedural anxiety, and  to improve the hospital experience for all children and their families.

For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/5evWmZZ4BS8

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Transcript

[00:00:00] Dom Raban: She arrives at the hospital and she’s taken up to a ward. She walks into the ward and she sees children walking around with no hair, holding drip stands, and she looks at them and she thinks oh, these people are dying. What am I doing here? I’m not dying. And it slowly dawns on her. That actually she’s probably got the same as they’ve got and at that point, we’re all just devastated.

[00:00:40] We all just think why has no one prepared us for this experience?

[00:00:49] Carole Blueweiss: Welcome to Wisdom Shared, where parents and kids are the experts and connection inspires change. I am your host, Carole Blueweiss. Today, I have as my special guest, Dom Raban, Issy’s dad and Xploro co-founder. Xploro is an app that was inspired by Issy’s hospital experience when she was 13 and diagnosed with a type of cancer called Ewing sarcoma.

[00:01:15] She is now in her twenties and cancer free, but it was her difficult experience in the hospital that sparked Dom’s imagination. During the cancer care journey, Dom and Issy noticed that there was hardly any information being shared with Issy, both while she was being tested for a diagnosis or before her treatments. Issy and Dom felt strongly that children who are entering a hospital deserve to be empowered by receiving age-appropriate information before they arrive in the hospital.

[00:01:46] That is why Dom’s company developed the child-centered app Xploro, to help kids know exactly what will happen before, during, and after a hospital procedure. To make sure that it was geared accurately for children, Dom created an expert advisory board made up of 12 nine to seventeen year olds. The kids use this app on their own phone or iPad to seek out answers to their questions and to explore. For example, they can take a tour of the hospital or check out the ultrasound machine or the CT scanner, all in augmented reality. It’s like being inside a movie. The kids can express themselves in different ways using their mood diaries and that way parents and the healthcare team can be aware of how the child is feeling at any given moment. The kids who will be getting IVs can also see how they will be connected to an IV machine step by step.

[00:02:44] And they can ask the avatar questions. And when the child types in their questions, Xploro is able to decipher the wildest of misspellings. The kids can even visit operating rooms where they may be receiving their surgery. And who wouldn’t want to know more about an MRI machine way before being slid into the dark donut shaped cylinder? [sounds of MRI machine]

[00:03:18] I can’t imagine what it would feel like for a child hearing that clanking sound for the first time, while a stranger stands there telling them that they shouldn’t move or else they’ll have to do it all over again. I remember being shocked and feeling anxiety when I had my first MRI and was given these strict instructions.

[00:03:36] Imagine if kids could listen to those MRI sounds before the appointment, and if they could see the inside of the machine on their phone in 3D, and ask questions to the virtual technicians who they can dress up and assign a name to. 

[00:03:51] Dom is the chair of Corporation Pop, a creative and digital agency that specializes in mobile app development and emerging technologies. He’s been creating stuff for nearly 40 years, from punk fanzines in the late seventies to content for new media platforms now. Dom lives in the UK, but he is marketing and coordinating research projects all over the world. The research has already shown that if you provide patients with information prior to treatment, you not only reduce their stress and anxiety, but you improve their clinical outcomes.

[00:04:26] Let’s listen to Dom tell us about this innovative idea and how Issy inspired him and his team.

[00:04:39] Dom Raban: My daughter was going through her 15th round of chemotherapy. She was feeling pretty rough. And someone came over with this experience measure, which is designed to gather feedback from patients on the experience they’ve had. And the question was how likely are you to recommend this service to your friends and family?

[00:05:07] Now, picture a 13 year old girl who’s feeling really poorly. She’s hating being in the environment. And I can’t say what she wrote on the form cause it’s unrepeatable, but it certainly wouldn’t have been of much use to the surveyors. It was a very, not only a very blunt edge sword in terms of a piece of research from the health authority, but highly inappropriate in terms of the way the question was asked as well. 

[00:05:34] Carole Blueweiss: Maybe the people making the questions need to think a little bit more about who’s reading them. 

[00:05:39] Dom Raban: Yeah, I think they need to think a bit more about the questions. When they’re designing those questionnaires, they need to do what we’re doing, which is design them iteratively with children so that they get the language right. And you also need to be very mindful of when you ask those questions. Asking someone to give a favorable review of a hospital when they’re undergoing chemotherapy, you are never gonna get a very positive response. So it’s just insensitive. 

[00:06:13] Carole Blueweiss: And overall, I get the impression that you say, and your daughter now let’s say many years cancer free and she’s thriving and – 

[00:06:21] Dom Raban: 10 years, yeah. 

[00:06:23] Carole Blueweiss: She’s in her twenties. So what I wanted to make known is your impression that the medical care that she received was great and you’re not criticizing the medical –

[00:06:33] Dom Raban: Absolutely. I mean, she had great clinical care and the reason she’s 10 years cancer free is because that clinical care was excellent. But what was missing was that information piece. 

[00:06:44] Carole Blueweiss: Let’s go back in time for our listeners who maybe in the midst of having heard that their child has been diagnosed with something, in the vein of just them learning from your experience, what was helpful? And the things that weren’t helpful, how did you manage that, in terms of your response to when you got the diagnosis, how you were treated. What you can think of that might help parents that are now going through that. What are some of your learning moments? 

[00:07:12] Dom Raban: I think, and I’ve heard this from so many parents and I don’t have any great pearls of wisdom here because we didn’t deal with it very well, and most parents don’t deal with it very well. You’re going through a very traumatic process. I think the thing that we learn is whatever you do, don’t Google because it’s unfiltered information. The very first thing that Issy found on Google and we found on Google at pretty much the same time was that she had a, according to this piece we found, she had a 20% chance of living. That’s not great. That’s not great information to find. So I think never rely on Google information, tempting as it is. So that was definitely a takeaway. I can’t think of any great coping strategies that we had. I think when you’re going through something like that, you’re very much living from one moment to the next and not thinking too much about the future, ’cause the future is so uncertain. It’s, you don’t know what the next scan result is gonna bring or…so it’s, you’re very much kind of living in the moment. 

[00:08:22] Carole Blueweiss: I appreciate your honesty. It helps people feel less alone when they just hear that you were one hot mess, you know?

[00:08:29] Dom Raban: Yeah. 

[00:08:30] Carole Blueweiss: I would like my listeners to hear the story of how it all began. As horrific as the diagnosis was, the silver lining was that it was caught early. And I think that’s part of the story. 

[00:08:42] Dom Raban: Yeah. So October 2011 and my daughter had just achieved her first rising trot in her horse riding lessons. And the next day she was in complete agony. We couldn’t understand what was going on. She was just finding it really, really difficult to sit down. We actually sent her to school that day, which to this day I really regret, but we sent her to school and she came home. She was still in intense pain. So we took her to our GP. Their diagnosis, if you like, was that she had growing pains and she was sent home. I think we gave her some mild over-the-counter painkillers, which didn’t really have any effect at all. And the pain just continued. And so we took her back to see a different GP this time who took her pain much more seriously and referred us to the local hospital.

[00:09:44] So we went up to the hospital via the ER, and she was eventually seen by a doctor who had an idea as to what it might be. And she was admitted onto a ward. And she was kept on the ward overnight because they didn’t have an MRI scanner available and they wanted to do an MRI scan so that they could see what was going on.

[00:10:08] So the next day, actually spent the whole day on the ward in agony, and then eventually at about four o’clock the following day, they took her down for an MRI scan, brought her back up and then a couple of hours later, the doctors invited my wife and I, not my daughter, into a consulting room and they showed us the scan.

[00:10:30] And I’m a designer. I’ve never seen an MRI scan before. Neither had my wife. So we look at this MRI scan and we don’t know what’s normal, what’s abnormal. And the doctors say we need to get a second opinion. We need to refer her to the local specialist center. They didn’t mention the word cancer at all at this point.

[00:10:50] Of course, now I realize what we were looking at was a tumor, but they didn’t tell us what their theory was that she had a tumor, but they didn’t tell us any of that. They said you’re gonna have to wait until a bed becomes available at the local specialist center. 

[00:11:06] Carole Blueweiss: Do you think the right thing to do for you would’ve been to get more information at that point or not necessarily? 

[00:11:12] Dom Raban: Not necessarily at that point, but I’ll go on and talk about the point of which we realized that Issy had cancer, because that was completely inappropriate. The significance of the rising trot, of course now with hindsight, is that what the rising trot had done was it had disturbed all of the nerves around the tumor site, and that had caused the intense pain. And had she not achieved that rising trot, then maybe it would’ve gone on for some weeks before we identified a problem. And then it might have been too late. 

[00:11:43] Carole Blueweiss: Can you just explain what is a rising trot? 

[00:11:45] Dom Raban: It’s when you effectively sit up and bounce up and down on the saddle. Now, if there’s any people who ride horses listening to this, they will be screaming at their devices now saying no, it’s not that at all. I don’t know anything about horse riding either, but it’s basically from a layman’s perspective, it’s bouncing up and down on the saddle.

[00:12:07] It was that action that agitated the nerve endings and created the pain. In a way, that was what raised the alarm. But coming back to the journey in the hospital. At this point, we’re in our local regional hospital. It’s just the children’s ward within a general hospital. Issy’s waiting for a bed to become available at this local specialist center.

[00:12:30] And the pain is getting worse and worse and worse. So they put Issy on a morphine drip and every day we kept expecting her to be transferred to the local specialist center which is in Manchester about 30 miles away from where Issy was. And the days went by. Eventually, I think it was two weeks later, during which time we have no information at all, no mention of the C-word, no mention of any kind of prognosis.

[00:13:05] And we are just thinking what? What is going on? Our daughter, despite the morphine, she’s in more and more pain. And then the news comes through that says a bed’s become available at Royal Manchester. She’s transferred by ambulance to the hospital. And she arrives at the hospital and she’s taken up to a ward. No one said it’s an oncology ward.

[00:13:30] She’s taken up to the ward. She walks into the ward and she sees children walking around with no hair, holding drip stands. And she’s never seen anything like that before. And she looks at them and she thinks these people are dying. What am I doing here? I’m not dying. And it slowly dawns on her that actually she’s probably got the same as they’ve got.

[00:14:01] And at that point we’re all just devastated. We all just think why has no one prepared us for this experience? I know that’s a particularly bad experience. I’m not saying that is the typical journey. I think there were a set of circumstances that led to us not being properly informed about what was gonna happen, but that was terrible.

[00:14:28] And that was a really bad starting point for her course of treatment. It left her with no faith in the medical services and actually I think faith and I don’t mean that in a religious sense, but faith in the service providers is really, really, really important. And the idea that you are working together towards a cure really helps get to that point of being better.

[00:14:56] And I think because my daughter started on such a bad footing, it actually worked against her treatment. That was just an awful, awful experience for all of us. But particularly for my daughter. 

[00:15:11] Carole Blueweiss: And your daughter has a brother, or you have a son. Tell us a little bit about your family unit. 

[00:15:17] Dom Raban: My daughter’s brother Oscar is quite close in age to Issy, he’s 18 months younger. Now his needs throughout the course of that year of treatment were largely ignored. So he’s 11 at the time and 11-year-old boy, as any parent will know, only needs lots of support and lots of attention. And we were unable to give that support and attention because for very obvious reasons, our focus was on our sick daughter.

[00:15:48] And as a consequence of that, I’ve become really interested in the psychosocial needs of siblings of children going through treatment for serious illnesses. And in fact, we’re thinking very seriously about how we expand the Xploro platform to cater, not just for the needs of the sick child, but for the needs of the brothers and sisters of the sick child as well.

[00:16:12] Carole Blueweiss: That’s brilliant too, because again, it sounds so logical to acknowledge that the sibling’s not paid attention to. 

[00:16:22] Dom Raban: There’s plenty of research to show that they experience a whole range of emotions from fear, guilt, anxiety that are every bit as damaging as the emotions that the sick child is going through. Whilst the information provision for sick children may be poor, information provision for the brothers and sisters of sick children is virtually non-existent.

[00:16:46] Carole Blueweiss: And who’s to say that the parents are in a position to explain it to them, if the parents even understand it themselves. 

[00:16:53] Dom Raban: Yeah. Yeah. 

[00:16:54] Carole Blueweiss: What strikes me too what you said about not Googling is that that’s another advantage of having something at your disposal that, what do you say certified, or that’s not the right word by the hospital. 

[00:17:07] Dom Raban: Validated. 

[00:17:08] Carole Blueweiss: Validated. So that if you have the app and that all the information on that app, like you could almost feel like you’re Googling, but it’s all been controlled by doctors. And just knowing that is a huge advantage as well, right? To just, to have less wrong information and you can trust what you’re reading. 

[00:17:32] Dom Raban: Yeah. Yeah, it’s really important. 

[00:17:35] Carole Blueweiss: I wonder, where did you get that sense that it was important to include the children? You actually even have an advisory board of children. Tell us a little bit about your philosophy.

[00:17:45] Dom Raban: Part of that philosophy comes from my professional experience. I’ve spent 30 years as a designer and central to my design thinking approach – always putting myself in the shoes of the end user. But in terms of how the major factor that’s influenced that in terms of Xploro was just watching my daughter’s experience as she went through the healthcare process.

[00:18:09] Carole Blueweiss: That makes a lot of sense. That way of looking at new either technology or just designing ideas or creating new, better environments for people that it just seems like in our world, as logical as that sounds and you make it sound so “of course!” But a lot of what is designed in this world does not ask the people that they’re designing for their opinions.

[00:18:32] Dom Raban: That’s so true. And unfortunately I’d go as far as to say the majority of what is designed is designed from a designer or commissioner first perspective. 

[00:18:44] Carole Blueweiss: Is that a thing? Is that like an expression? 

[00:18:48] Dom Raban: I just made it up. [laughter] But no, I think it is. I think it’s, unfortunately it’s unusual, I think, to make the end users an integral part of the design process. 

[00:19:06] Carole Blueweiss: Yeah. One word to describe that is inclusivity. Right? 

[00:19:10] Dom Raban: Yeah. 

[00:19:10] Carole Blueweiss: To on a broad, broad way. 

[00:19:12] Dom Raban: Yeah. A lot of people pay lip service to that, but it’s not fundamental to their approach.

[00:19:17] Carole Blueweiss: It just seems so logical. What leads to so much more success if you know – 

[00:19:23] Dom Raban: Absolutely. 

[00:19:23] Carole Blueweiss: If you can actually put yourself in someone else’s shoes and how can you do that best than by asking the people who have the shoes? 

[00:19:31] Dom Raban: Yeah, yeah, yeah, totally. Totally.

[00:19:35] Carole Blueweiss: How does somebody like you do this? How do you figure this out? Tell us a little bit about your process. 

[00:19:44] Dom Raban: It always starts with identifying user needs and users in this context, they’re child patients. To identify user needs, you have to talk to children. It starts with that conversation with children. What do you want? What engages you? I’ve just come back from a trip to the States where we were beginning the process of developing a new game that will sit within Xploro. And we spent three days interviewing patients, interviewing clinical staff, interviewing parents, to understand what their emotional state was through a particular treatment pathway and what their pain points were and getting ideas around what they thought might relieve them in that process. We were actually at the sedation pathway. 

[00:20:33] So that’s how we start is a very detailed research phase. And then it’s what we call an ideation phase. So that’s where my team of designers and developers get together. And we assimilate all of this research and start thinking about how we could produce something that might respond to some of those needs that we’ve identified.

[00:20:58] And then that results in perhaps a storyboard, perhaps a mood board even. And then we take that back to the end users, the child patients. And we say, what do you think of this? And they give us feedback and we go back, literally back to the drawing board and take on board that feedback. And we refine those ideas and that’s an iterative process, always involving children at every step of the way.

[00:21:26] We’ve got essentially a design proposal that we’re happy with as content creators, but the end users are happy with in terms of feeling like we’ve proposed something that’s gonna be engaging and informative. And then at that point, that’s when we hand over to the developers who write the code, who build the thing.

[00:21:46] And again, we’ll test that as we go through. So we’ll start with a quite a basic prototype that children can play with. And very often they’ll identify things that aren’t working as planned or things that we thought looked good on paper, but actually when you build them as an interactive piece, don’t work so well.

[00:22:06] So we modify it and that goes on for as long as it takes for us to get to the finished product. So for example, you talked about the interactive environments in our application. We’ve got an OR, an operating room, that you can explore and find out what goes on in the operating room. We were very lucky in that we have a very close relationship with a hospital here in the UK and they let us get gowned up and go in and watch an operation.

[00:22:37] So in that sense, we were walking in the shoes of the physicians at that point, so that we could understand what that looks like from their perspective. And it’s that level of engagement that enables us to build, that has the beneficial effect that it does.

[00:22:55] Carole Blueweiss: Let’s listen in on Dom’s Zoom call, where he demonstrates Xploro. 

[00:23:00] Dom Raban: The first thing we’re gonna do is customize the avatar to make it our own. So if I tap Customize My Look, I’ll try skin color. I’ll maybe put some glasses on and some hair, some clothes. And if you see the plus button down on the bottom lefthand side of the screen there, if I tap that, I can add some other things and have my avatar in a wheelchair.

[00:23:25] I can wear a face mask if I want. The next thing we’re gonna do is give the avatar a name. Let’s go with Flash. Flash Trendy Bird. There we go. There’s Flash. And if I tap the forward arrow it now says it’s time for me to enter your world. So what I’m gonna do is I’m just gonna pick up the iPad. And when I press the forward arrow, you’ll see that my camera’s been activated.

[00:23:48] And in a second, the balloon is gonna appear. And when that balloon turns green, I’m gonna tap it. And there’s Flash stood on my desk and this is just about making the avatar feel real to the child. And I can make it bigger. 

[00:24:01] Female Voice: That’s so cool! 

[00:24:03] Dom Raban: I’m gonna tap the green balloon now. So we’ve gone through the setup and we’re into the main body of the application. And just before we go on, and I tell you – 

[00:24:13] Female Voice: He’s dancing! 

[00:24:15] Dom Raban: Yeah! I’m just gonna talk you through a couple of features here on the home screen. So as I go through the demo, whenever you see that red balloon top right, that means that you can see something in augmented reality. So if I tap it now, then Flash is gonna walk out through the door, into the real world and I’ll bring it back by tapping the balloon again. And it’ll come back in.

[00:24:43] Carole Blueweiss: It’s gonna be interesting, the research that you’re doing. Of course, you have to sell it to the hospital and there’s this evidence that they need to see that it will be profitable in one way or another. So you have to have outcomes. So you have to find a way to prove it, that this is gonna benefit the hospital as well as the families. So how do you go about showing the hospitals that this is something that they want to buy? 

[00:25:05] Dom Raban: Yeah, so the very first thing we did was a piece of research that’s published in the Journal of Medical Internet Research, and that was conducted with 80 children within a hospital setting. 40 of those children had access to standard healthcare information. So whatever was available in the hospital. And the other 40 had access to Xploro. And what the research team found was that those children with access to Xploro demonstrated a statistically significant reduction in procedural anxiety. As well as statistically significant increases in both patient satisfaction and knowledge about procedures.

[00:25:48] So that was great. A really thorough study. The problem is that from a hospital perspective, it’s not enough to just say that we can reduce anxiety for your patients, important as that is. Because most hospitals won’t equate that to a year-on-year cost saving. Even though we know from other research that reducing anxiety generally improves clinical outcomes.

[00:26:14] It’s still not enough to make that business case to hospitals. At the moment we’re doing a couple of studies. One is looking at whether children who are using Xploro move less when they go for an MRI scan, because they’re prepared for that procedure and therefore less anxious about it. Now, if they move less, that means that the procedure doesn’t have to be repeated. Because if you move when you’re having an MRI scan, you have to start the whole thing again. So we are looking at whether children using Xploro move less, that can be equated to a cost saving. In another study, we are looking at whether children who have access to Xploro require less pre-procedural sedation.

[00:26:55] And again, if we can demonstrate that, we can equate that to a cost saving. So those are both really important pieces for us because they advance that research from the powerful but economically not very compelling research that says we reduce anxiety into something that is economically compelling, because it can show that that reduction in anxiety then leads to cost savings through procedural efficiency.

[00:27:22] Carole Blueweiss: And how are hospitals responding to you? 

[00:27:26] Dom Raban: It’s really well received by hospitals. I mean, the people on the ground in the hospital who usually get what we are doing, because it really augments what they do, are the child life specialists. So they’re the first people within a hospital to say, hey, Xploro is really gonna help our children here.

[00:27:47] Clinical teams really understand it. Obviously, the barrier is once you start getting to procurement departments and understanding where the money’s gonna come from and what the business case is gonna be and all that sort of stuff, but the healthcare professionals on the ground, the doctors, the nurses, the child life specialists, they all absolutely get what we’re doing and see the value.

[00:28:10] We have experienced some resistance from some healthcare professionals, thinking that in some way, we’re trying to replace what they’re doing. We’re absolutely not trying to do that. We’re trying to augment what they’re doing. I think it’s a reality that no matter how well resourced the hospital is, they can’t see every patient, all of the time.

[00:28:32] And especially, they can’t always see a patient at a time of need because there are way more patients than there are healthcare professionals. And so Xploro, whilst it can never replace the fantastic work that those healthcare professionals do, it can augment it and it can fill in the gaps. Part of the power of Xploro is that the most important time to reduce anxiety for young patients is before they come to a hospital.

[00:29:02] Because if you wait until the point at which they walk through those hospital doors, before you start trying to reduce their anxiety, then you’ve got a much, much harder battle. We argue that the best time for a child to access Xploro for the first time is the point at which they first hear that they’re going to a hospital.

[00:29:20] Now that might be weeks before they actually go through the hospital doors. At that point, whilst they’re in the home, the child life specialists, the social workers, the other members of the healthcare team aren’t available. They’re not around to help reduce anxiety in those children, prepare them for what’s gonna happen.

[00:29:37] They come into play once the child goes through the hospital doors, and this may be in the waiting room or going through the procedure. Where Xploro has massive benefit is in tackling that anxiety at the point where it starts to emerge. And if we can do that, then we can potentially have a child coming into hospital who already understands what’s gonna happen, is already comfortable about what’s gonna happen, and is feeling much more relaxed about the process. They may still well, they may well still have a degree of fear and uncertainty. But they’re much more receptive to the treatment that’s gonna be administered. 

[00:30:17] Carole Blueweiss: Yeah. And if there was research that could be done to show the importance of one’s mindset when they’re getting treated for something, or just in general, your mindset, and we already know stress causes problems. 

[00:30:30] Dom Raban: So there has been some research that has shown that the best time to give patients preparatory information for procedures is greater than seven days before the procedure.

[00:30:44] Carole Blueweiss: That’s interesting. That’s definitely not how at least the American healthcare system works. 

[00:30:50] Dom Raban: Oh, that’s not unique to the American healthcare. The UK healthcare system is the same. 

[00:30:56] Carole Blueweiss: And they have something called prehab, which is a form of that in a sense that, like, if you’re gonna go get a knee replacement that you get some physical therapy, let’s say, before but that’s not common practice. 

[00:31:10] Dom Raban: Yeah. And that’s been virtually non-existent during the pandemic as well, because those opportunities, at least when my daughter was going through treatment, she was in some cases, able to go into the hospital prior to the treatment and see what was gonna happen. In the pandemic, those kind of things just haven’t been possible.

[00:31:33] Carole Blueweiss: Sure. So having an app would’ve solved that problem. 

[00:31:36] Dom Raban: Yeah. 

[00:31:37] Carole Blueweiss: How did you come up with a name?

[00:31:43] Dom Raban: It was a very, very long process. So our working title, when we were first developing the app was awful and we knew it was awful. We, it was called Patient’s Virtual Guide. We then brainstormed literally hundreds of names and tested them with children. We got it down to about a short list of about 20 that we were happy with.

[00:32:04] One of the names on that list was Xploro. And that came out to be the most popular, but the derivation of the name Xploro, it relates to how we want children to use the app. And I think about my daughter’s experience, her experience was that she was, although, you know, the healthcare information available for her was not good. What that was kind of given to her in a barrage of information that she wasn’t necessarily an appropriate time. So I think at the point of diagnosis, she was given a thick wad of leaflets and some of which were aimed at adults, some of which were aimed at children. And the whole point of Xploro is that we want the child to explore at their own pace and to find information as and when they want it.

[00:32:55] And if they decide they want to just customize an avatar or play a very simple game, they can do that. But if they want to go off and find out what an MRI scan is, or if they want to find out what causes cancer, they can also do that. But it’s very much at the child’s own pace and governed by their own worlds. That’s why we call it Xploro. 

[00:33:17] Carole Blueweiss: You’re an inventor. You were inspired by your daughter to do something that is now in the world that never could have been done had you not had your horrible experience. And so I just wanna bring it back to the idea of if money were not even an object, if we weren’t even talking about selling an object or a company or an idea, if it were just purely your vision of the future and using this app for children, how do you see it playing out?

[00:33:52] Dom Raban: Our long term goal is to be a health information platform for any patient, with any condition, of any age, anywhere in the world. Because we’re talking about the information needs of children being underserved, but actually the information needs of adults are also underserved. And funnily enough, I’ve spoken to plenty of physicians who have found themselves as patients for the first time, and it’s an eyeopening experience for them.

[00:34:28] And they go into a hospital as a patient and they realize that actually information needs are not being properly served. So when I think about the longer term future for Xploro, we’ve started with children with cancer for very obvious reasons that we’ve been talking about so far. But actually, through the process of developing an app or an intervention that that is very firmly rooted in my daughter’s experience, I’ve become much, much more interested in the experience of all patients going into hospital and their information needs. So we do plan to release an adult version. It won’t be this year. It’ll be at some point in 2023 or 2024. To get to that point of any condition, we’re even now ,we’re currently developing content for new disease areas like diabetes, respiratory, and so on.

[00:35:23] Carole Blueweiss: So basically you’re trying to empower people with information and just use information along with the medical treatment to just make that medical treatment that much more effective.

[00:35:33] Dom Raban: Yeah. And central to that empowerment is A, it’s about putting the patient in control and B, it’s about and it’s gamification is an overused word, but it’s about using entertaining interactions to enable the patient to engage with that content in a way that is actually far superior. That’s probably the wrong word to use, but it is very different to reading a leaflet or a webpage. It’s much more engaging. 

[00:36:08] Carole Blueweiss: Right. More integrative and uses a different part of the brain. And it just communicates to many different learning styles. And I would use the word play as a mechanism to do all the things that you’re suggesting. 

[00:36:23] Dom Raban: We call that stealth learning because through play, you are learning about what’s gonna happen, but you’re not consciously learning. It’s not like reading a textbook. When I think about what we’re trying to do with Xploro, we are trying to improve the health literacy of children. And by improving the health literacy of children, we’re hoping to build a generation of patients that are able to self-manage their healthcare in the future. 

[00:36:55] Carole Blueweiss: Is there anything that you’d like me to ask you that I haven’t asked you? 

[00:36:59] Dom Raban: You could ask me what the immediate things in our pipeline are. And I can tell you a little bit about some of the things we’re gonna do over the course of the next year.

[00:37:07] Carole Blueweiss: Okay, what are some of the things in your pipeline? 

[00:37:11] Dom Raban: At the top of this call, I’ve just returned from a trip to the States. That was very exciting because one of the hospitals that we visited, we’re actually working on a big co-development project to develop some new content around sedation, which will be really important. Sedation is a difficult thing to go through. 

[00:37:30] Carole Blueweiss: Can you tell the audience what is sedation and a little bit more about that? 

[00:37:35] Dom Raban: Sedation is the administering of drugs that effectively put you into a state where you don’t feel pain. But that’s very often administered through an IV. It’s very disorientating. And we’re developing some content to help children understand what happens throughout that process. So that’s really exciting. We talked about siblings earlier. We’re actively looking to develop content for siblings and some of that content will be one of the things you can do in Xploro at the moment is see your avatar in augmented reality.

[00:38:10] When we develop our new siblings content, you’ll be able to see your brothers’ and sisters’ avatars in augmented reality and share virtual hugs with them, share emojis, that sort of thing. You’ll be able to share calendars so that you always know what your brothers and sisters are up to. That’s a development that I’m really excited about because it takes us from being an application for just the sick child into a holistic application that serves the needs of the whole family.

[00:38:38] Carole Blueweiss: And this would all be included in the app or in the device? 

[00:38:41] Dom Raban: Yes. 

[00:38:41] Carole Blueweiss: The capabilities. 

[00:38:42] Dom Raban: So essentially what happens when a hospital gives a parent an access code to Xploro, they have one code and that’s intended to be used by the child going through treatment. And the plan is that when a hospital gives the parent an access code, they’ll receive codes for all of their children.

[00:39:02] And then that means that each child can have their own instance of Xploro. And because the parent has okayed each of these children to have Xploro, we can then enable communication between each of those instances of Xploro. We can’t enable that in between one child and the child of another family because of purity and child protection issues.

[00:39:25] But within a family, we can enable that communication. And because we can enable that, that means we can do fun things like letting a avatars meet in augmented reality and that sort of thing. 

[00:39:37] Carole Blueweiss: That reminds me of something else that you forgot to mention, the idea that these kids can put emojis down too, that will show their psychological or mental status. And then the parents and even doctors can also see the emotional state of these children. And the linkage to Epic. Is that correct? 

[00:39:55] Dom Raban: Not just Epic, but any electronic health record system. 

[00:39:59] Carole Blueweiss: So the doctors and nurses are in the loop. 

[00:40:03] Dom Raban: Yeah. Yeah, exactly. 

[00:40:07] Carole Blueweiss: With the parents and the children. That’s another brilliant, so many things, you’ve thought of everything. I wonder, is that it? I don’t want to cut you off. Anything else that’s in the works? 

[00:40:17] Dom Raban: There are a lot of other things in the works. We’re doing some really exciting things with the augmented reality. One of the things that we’re in the very early stages of developing is the ability for the child to decorate the room they’re in virtually. We’re in early stages with that so I’m not gonna say anymore about that, but it’s, there’s some exciting stuff going on there. 

[00:40:39] Carole Blueweiss: Where do people go to find out more information or to follow you, to see what other things are coming up? 

[00:40:46] Dom Raban: So our website is a good first place to go. It’s desperately in need of an update. Our focus has been on developing the application rather than keeping our website up to date, I’m afraid. A rebuild of the website is in the pipeline, but our website’s a good first place to go. There’s a contact form on the website if anyone has any inquiries about Xploro, they can fill out the contact form. I’m very active on LinkedIn. I’m very happy to connect with people on LinkedIn and answer any questions they might have. So, website or LinkedIn. 

[00:41:20] Carole Blueweiss: I just want to thank you so much for coming on today and talking to us about your company, about your daughter, about your family, about your thoughts, about how we can improve healthcare and how you were so inspired by your daughter and how a silver lining like this can happen. I wish you the best of luck, that all your ideas get out there in the world ’cause it’s just – 

[00:41:41] Dom Raban: Thank you. 

[00:41:41] Carole Blueweiss: It’s all good. It’s all positive.

[00:41:43] Dom Raban: Yeah, I think if I was gonna say one last thing as well, is that my journey is by no means unique and in doing this, I have met so many parents who have been through not necessarily a cancer treatment with their children, but they have been through a protracted serious illness with one of their children. I’ve met so many parents who have done what I’ve done, basically, which is reflect on that experience and then thought, how can I use my professional skills to do something that improves that experience for other children? Now, in my case, my professional skills are in design and software development, but I’ve met parents who use those skills to do something that improves that experience for other children, whether it be amazing fundraising or creating picture books or whatever it might be. What I’m doing is my own expression, but I’m by no means unique on that journey. There are lots and lots of parents doing amazing things. 

[00:42:44] Carole Blueweiss: I’ll shout out to all you parents out there who have created new things to improve the world for the next generation or for the next people coming up. And feel free to contact me at Wisdom Shared if you want to tell your story. Thanks so much again, Dom, for coming here and sharing. 

[00:43:05] Dom Raban: It’s been an absolute pleasure. Thanks.

[00:43:11] Carole Blueweiss: An exciting new development occurred since the conversation with Dom. In the next few weeks, existing stock of Xploro will be transferred to Xploro’s United States parent company, which will then own the UK company. The official name for this transaction is called a Delaware flip and Xploro will be recruiting sales, operations, and marketing roles to this United States parent company in the fall.

[00:43:34] For more information about Xploro, please go to the show notes for all links. Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

Eleven-year-old Easton and his mother Jennifer are a great son-mom team. In this episode, we will hear from both and learn about support dogs, supercars, playgrounds, pregnancy, birth, and spina bifida. 

For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/yVwx-zwqNhM

FIND AND FOLLOW JENNIFER:

ABOUT SPINA BIFIDA:

FROM THIS EPISODE:

TRANSCRIPT:

[00:00:00] Jennifer: We want to encourage that intermingling and that socialization of exposing the differently-abled and the neurotypical to each other because they can learn so much from each other. And as children, we need to embrace those differences and teach them that it’s okay to be different. 

[00:00:24] Carole: What if your child was unable to access their local playground or any playground in your general area? Jennifer, mother to Easton, found herself in that situation. Easton uses a wheelchair to get around and there were no accessible playgrounds in their neighborhood. So Jennifer began fighting hard to raise money and community support to build a playground so that all the kids in the neighborhood could play together.

[00:00:53] I was introduced to Jennifer by my friend. And after speaking with Jennifer, I realized that she had a lot of wisdom to share. 

[00:00:59] Jennifer: He has taught me perseverance, patience. He has taught me to embrace the differences in people and to embrace that there’s not always just one way of going about things, that there’s always multiple ways to do things.

[00:01:20] Carole: Welcome to Wisdom Shared, where parents and their kids are the experts and where connection inspires change. I am your host, Carole Blueweiss. 

[00:01:29] And today, I have as my special guests, Jennifer Crofoot and her son, Easton Gonzalez. Easton was born with a diagnosis called spina bifida. We will hear from both Jennifer and Easton today, as they share with us their journey, filled with furry and motorized passions, middle school socializing, accessibility, and much, much more. I asked Easton to describe how he appears right now. And this is what he said.

[00:02:02] Easton: Well, I’m a dark brown-haired boy in a wheelchair still in school uniform.

[00:02:12] Carole: who’s that barking in the background? 

[00:02:14] Easton: Wisdom, my dog. 

[00:02:16] Carole: Wisdom. 

[00:02:17] Easton: Come here, come here. Wisdom – here, come here. Come here. Come here. Up. 

[00:02:26] Carole: Hey, Wisdom. Welcome to Wisdom Shared.

[00:02:29] Easton: Okay, she’s done. 

[00:02:30] Carole: Thanks for the intro. What kind of dog is she? 

[00:02:33] Easton: She’s a yellow lab and she’s two years old. 

[00:02:37] Carole: How long have you had her?

[00:02:38] Easton: We’ve only had her about a few months.

[00:02:41] Carole: Have you ever been interviewed before?

[00:02:43] Easton: Yes. 

[00:02:43] Carole: For what? 

[00:02:44] Easton: For getting a dog. 

[00:02:47] Carole: What did you have to do to get a service dog? 

[00:02:49] Easton: Well, we had to go to a two-week training class, stayed there overnight in the dorms, and we had to be trained to know how to handle one. And then we had to be matched with the perfect one.

[00:03:00] Carole: Did you get to walk around with different ones? 

[00:03:03] Easton: Yep. We worked with about 11 dogs. And then narrowed it down to like six, because that means they were trying to see which ones were perfect match to people. And then we got matched with our dogs and then we got to graduate from the dog school. 

[00:03:23] Carole: Were there other grownups and kids with you?

[00:03:26] Easton: It was mostly grownups. 

[00:03:29] Carole: Were you the only kid? 

[00:03:31] Easton: Yeah. 

[00:03:31] Carole: How did that make you feel? 

[00:03:34] Easton: Didn’t bother me. 

[00:03:36] Carole: Does the dog choose you or you choose the dog? 

[00:03:39] Easton: The dog has to choose me. The dog has to like me. 

[00:03:42] Carole: So Wisdom was the one that liked you the most? 

[00:03:45] Easton: Yeah. And she acted the best around me. She was the only one that paced with my wheelchair while walking.

[00:03:53] Carole: Wow. So she’s really smart. 

[00:03:55] Easton: Mm-hmm. She just knew. Apparently, she just knew. 

[00:04:00] Carole: And there were other dogs that didn’t know? 

[00:04:03] Easton: There were other dogs that really didn’t have that part of them. And I don’t know what it was about Wisdom, but she just knew what to do. 

[00:04:12] Carole: Tell me a little bit more about Wisdom. So a little bit about her personality.

[00:04:15] Easton: She’s really funny, 

[00:04:18] Carole: friendly or funny? 

[00:04:19] Easton: Both, both friendly and funny. She’s really nice. She’s very calm, but when she wants to play, she really wants to play. She’s like really funny in the mornings. She does little hops. Her tail just goes like a million miles an hour. 

[00:04:37] Carole: Does that mean she’s happy? 

[00:04:39] Easton: She’s really happy in the mornings. ‘Cause her tail just goes. 

[00:04:45] Carole: She’s waiting for you to wake up. 

[00:04:46] Easton: My mom lets her wake me up and she literally sprints onto my bed and starts licking me. 

[00:04:52] Carole: Did she come with that name or did you give her that name? 

[00:04:54] Easton: She came with that name. 

[00:04:56] Carole: It’s kind of perfect, right? Cause like you said, she just knew how to walk with your wheelchair.

[00:05:02] Easton: Mm-hmm 

[00:05:02] Carole: and with you, 

[00:05:04] Easton: yeah. 

[00:05:05] Carole: Do you call Wisdom a pet or a service dog? 

[00:05:08] Easton: She’s both my pet and service dog. 

[00:05:11] Carole: How does that work? If you have a pet and a service dog, how does she know when to be which?

[00:05:16] Easton: So when I’m with her in public with her service dog vest, she’s a service dog, but when she’s at home, she’s not a service dog. She’s a regular pet. 

[00:05:26] Carole: She has time off. She’s not working. 

[00:05:28] Easton: She doesn’t always work. She definitely is off a lot. She just works when we go out places. 

[00:05:37] Carole: And then how does she help you? 

[00:05:39] Easton: Just both mentally and physically. ‘Cause I have a surgery coming up next month, so I need her, her comforting, recovering. And she also helps me physically ‘cause that’s with the surgery, I won’t be able to pick things up. 

[00:05:57] Carole: What kind of surgery are you having? 

[00:05:59] Easton: Rods in my back. 

[00:06:01] Carole: So Wisdom will be able to help you with picking things up. 

[00:06:05] Easton: Picking things up, yeah. So she could pick things up and then give them to me. 

[00:06:10] Carole: That’s great. And then probably can help you with all kinds of fetching, right? That you won’t be able to. You’ll be recovering. You won’t be able to move at first. 

[00:06:18] Easton: Yeah. And I won’t be able to move at first so she could do that. 

[00:06:22] Carole: And then of course, I’m assuming that you consider Wisdom one of your friends? 

[00:06:28] Easton: Definitely, a furry friend, 

[00:06:29] Carole: Furry friend. Do your friends like her? 

[00:06:32] Easton: Oh yeah, everyone does. 

[00:06:33] Carole: What are some of your favorite places to go on weekends with your friends?

[00:06:37] Easton: Usually when I wanna have a play date with my friends, we go to our local park. 

[00:06:43] Carole: And what do you like to do there? 

[00:06:45] Easton: We ride bikes and go on the trails and stuff. 

[00:06:51] Carole: Talking about the park, your mom told me about the playground that you and her are helping to build. 

[00:06:57] Easton: I’m just really the inspiration for the build.

[00:07:02] Carole: Tell me about that. What do you mean? 

[00:07:04] Easton: So they built this playground for people like me. In wheelchairs and walkers. 

[00:07:11] Carole: Describe to the audience what this playground is gonna be like and why it’s different from other playgrounds.

[00:07:17] Easton: It’s gonna be all wheelchair accessible. It’s gonna be all accessible. 

[00:07:21] Carole: What’s accessible mean to you?

[00:07:23] Easton: Well, the playground is gonna have all ramps to get up into the place. It’s gonna be the wheelchair swings. 

[00:07:30] Carole: Your mom told me that kids with disabilities and kids without disabilities can play together. 

[00:07:35] Easton: Mm-hmm . 

[00:07:36] Carole: What do you think about that? 

[00:07:38] Easton: Great. It’s really great, honestly. 

[00:07:42] Carole: Is it hard for you now to play on the playground? The way the normal playgrounds are? 

[00:07:47] Easton: Oh yeah, definitely. 

[00:07:49] Carole: What’s hard about it? 

[00:07:50] Easton: I can’t usually get on the equipment like normal people. 

[00:07:54] Carole: Because you’re in the chair. 

[00:07:55] Easton: I could get out of my chair, but then I’m afraid of getting stepped on, like my hands. 

[00:08:02] Carole: What about getting into other buildings and places? Do you ever encounter that it’s you just can’t get in ‘cause there’s no ramp? 

[00:08:10] Easton: No. Well, my mom will find a way to help me. 

[00:08:12] Carole: Can you describe some times when it was hard to get in and your mom helped you? 

[00:08:17] Easton: The Supreme Court in Tallahassee, gonna go in there for a tour and it was all steps. My mom carried me and someone else carried the chair. That’s usually how it goes. 

[00:08:31] Carole: Do you have any idea what you wanna be when you grow up? 

[00:08:34] Easton: Probably something in the law enforcement, a police dispatcher, or something like that. 

[00:08:39] Carole: Do you have any advice for kids? 

[00:08:42] Easton: You could find a way to figure it out. I mean, when you’re in a wheelchair, you usually figure out how to do things. 

[00:08:50] Carole: So you don’t let the wheelchair stop you. 

[00:08:52] Easton: No. 

[00:08:54] Carole: Because sometimes if someone’s brand new in a wheelchair, they might be scared or, you know, so it’s good to hear from people like you. 

[00:09:00] Easton: I mean, since I’ve been in a wheelchair my whole life, it’s like you said, nothing really stops me. ‘Cause I know there’s a way. 

[00:09:10] Carole: That’s good for other people to hear. Is there anything that makes you angry?

[00:09:16] Easton: Only some days it gets to me that there’s some things I won’t be able to do, but sometimes not. 

[00:09:27] Carole: So like what’s some things that are like that? 

[00:09:30] Easton: Well, certain sports. 

[00:09:32] Carole: What’s your favorite sport? 

[00:09:35] Easton: Wheelchair motor cross. Like wheelchair BMX. You go down ramps, do stunts in a wheelchair. 

[00:09:44] Carole: What makes you happy?

[00:09:46] Easton: Having friends. 

[00:09:48] Carole: Why do your friends make you happy? 

[00:09:50] Easton: They’re there for me. 

[00:09:52] Carole: What does that mean? Tell me more so I can understand. 

[00:09:55] Easton: They’re always by my side. 

[00:09:57] Carole: What does that mean? They’re by your side. 

[00:09:59] Easton: They always have my back. 

[00:10:00] Carole: If you could do anything for an entire week with anybody that you choose to go do something with, where would you go? Anywhere in the whole wide world.

[00:10:11] Easton: Probably the park, just to hang out for a whole week with my friends. 

[00:10:16] Carole: Your mom told me that you know everything there is to know about supercars and hypercars, which I don’t even know what that means. 

[00:10:23] Easton: Honestly, I don’t even know where to start with that. 

[00:10:25] Carole: Tell me about how you got interested in cars and what are your favorite cars?

[00:10:30] Easton: Well, I just started liking them so much. 

[00:10:33] Carole: What cars do you like? 

[00:10:34] Easton: Everything. 

[00:10:35] Carole: Every single car? 

[00:10:37] Easton: Oh yeah. 

[00:10:37] Carole: Do you have a favorite car?

[00:10:39] Easton: Most of the supercars, the really nice cars. 

[00:10:44] Carole: Is that what a supercar is? It’s a really nice car? 

[00:10:46] Easton: It’s like a high-performance sports car.

[00:10:50] Carole: What’s the name of a car that’s a supercar? 

[00:10:52] Easton: A Lamborghini.

[00:10:54] Carole: What’s a hypercar? Your mom said you love hypercars. 

[00:10:57] Easton: So hypercars are the one step up from a supercar. So they are like multimillion-dollar cars. 

[00:11:04] Carole: Wow. So is there an example? 

[00:11:07] Easton: Like Bugatti. 

[00:11:08] Carole: So I guess you like Ferrari. 

[00:11:10] Easton: Definitely. 

[00:11:11] Carole: So if you could have any car in your garage, which one would you pick? 

[00:11:14] Easton: Lamborghini.

[00:11:15] Carole: Anything you’d add to the car? 

[00:11:17] Easton: Definitely. A lot of modifications. 

[00:11:19] Carole: A lot of modifications. 

[00:11:21] Easton: Oh yeah.

[00:11:22] Carole: What’s the most important one that you can think of? 

[00:11:25] Easton: Probably an engine swap 

[00:11:27] Carole: And then would it make more noise or it just goes fast? 

[00:11:30] Easton: Go faster. When you want a supercar, you want to go fast. 

[00:11:36] Carole: The problem is where do you drive it that you can go so fast? 

[00:11:39] Easton: I honestly don’t know, like open roads and it’s really just nice to have one of those cars. It’s just a nice car. Most of the engines just sound amazing. 

[00:11:52] Carole: What are you gonna do now? 

[00:11:53] Easton: I have no idea. Probably have dinner. 

[00:11:57] Carole: Thank you, Easton. Thank you so much for taking time out of your busy day. I know that school can be tough, so thank you. 

[00:12:04] Easton: It’s your turn, mom. Get over here. 

[00:12:08] Carole: Bye, Easton. Well, thanks so much.

[00:12:15] What has Easton taught you? 

[00:12:17] Jennifer: He has taught me faith. He has taught me perseverance, patience, love in ways that I could never even imagine. He has taught me to embrace the differences in people and to embrace that there’s not always just one way of going about things, that there’s always multiple ways to do things. It’s something new daily. 

[00:12:47] Carole: And his surgery that’s coming up? 

[00:12:49] Jennifer: We scheduled it for the summer, ‘cause it was such a long recovery and he’ll have the rods put in his back. He drops his pencil, he’s not gonna be able to bend over and pick it up. And that’s one of the things Wisdom is trained to do is to pick stuff up off the floor when he drops it and open doors and open drawers and she can push the wheelchair buttons that open the doors automatically at the public places, she can jump up and push the button that opens the doors for the wheelchair accessibility. 

[00:13:12] Carole: What is the role of Wisdom for your family? 

[00:13:16] Jennifer: I think she brings a calm to this house. Easton is really high anxiety. And I feed off of that. Out of all the dogs we worked with, she’s probably one of the most chill dogs you’ve ever met. She is just chill and calming, and I think she brings a calm to him, which helps me. And Dave, my husband, is just a dog person anyway, and just loves her. Getting up in the morning is fun again because, you know, she’s so happy to see you. I mean, she’s Easton’s dog, but she’s emotional support for me too. And I spend the majority of the time with her, and she’s been an incredible addition to this family in so many ways. And she just brings joy and a calm to this house that we weren’t experiencing before. 

[00:14:00] Carole: His main role is more emotional. 

[00:14:03] Jennifer: Some of it is, but again, with the back surgery, she’ll go get things for him if he needs something and she’ll open something, if he needs it. She is both physical and emotional for him, which is great. She’s emotional for me. 

[00:14:16] Carole: What was your pregnancy like? 

[00:14:17] Jennifer: I went in at 22 weeks to do a gender ultrasound just so they could check on everything and was very excited, went in with a lot of hope and excitement. And they had a really hard time. They couldn’t tell that Easton was a boy. He had his legs crossed. I now know that it’s because he was not moving his legs.

[00:14:39] The ultrasound tech told me to get dressed and go back into one of the rooms and that the doctor would come meet with me. By the grace of God, I had enough sense to take a friend with me that day. His dad at the time was not in the picture. And I’m sitting in the room and the doctor walks in and she has tears in her eyes. And she looks right at me and she said we found something.

[00:15:00] There is a defect on your baby’s spine. Most likely it’s spina bifida. The layman’s term is spina bifida. The medical term is called myelomeningocele. Spina bifida comes in three different varieties. She said my colleague is down the street, he is a maternal-fetal specialist. I have already sent your films over to him and he’s waiting for you right now.

[00:15:27] So I was whisked out of her office and went down to the maternal-fetal doctor. This is not the appointment that I thought I was gonna have. And went in, met the doctor, and the words were not good words. They were this is a significant, an extremely significant birth defect. From what I’m seeing on the films, we’re not looking at a good quality of life. You’re 40 years old. You’re of advanced maternal age, which is the real PC way of saying you’re old to have a baby. He said, if you have any other things going on, this baby will not survive this pregnancy. You will not go to full term. Meaning the pregnancies, when you start reaching your forties, they start looking at things like down syndrome. He says, if there is more than one issue, this baby will not be born. 

[00:16:27] He said the next step would be probably an amniocentesis. We need to figure out if there’s more going on. They tell you all of the bad things about having a child with spina bifida. They will paint the bleakest, darkest, ugliest picture they possibly can, but they don’t ever tell you the good possibilities. I was up in Nashville at the time. And there was not a chapter of the Spina Bifida Association that was active in Tennessee. So I joined the Kentucky affiliation. Doctors actually have to tell both sides of the story when the child is diagnosed with spina bifida. They get to show pictures. Hey, here’s Easton, he’s 10. He rides a bike, he goes to school, he does this. Now here’s the other side. They have to tell you both sides. Most women are gonna go off the advice or the encouragement of their medical professional. If I’m asked 10 times, if my faith wasn’t strong, at one point, I’m gonna say, yeah, I can’t do this.

[00:17:38] That’s one of the things that Easton taught me, going back to your original question is doctors aren’t always right. But malpractice is rampant. They have to paint the worst picture possible so that they’ve told you everything that could possibly happen to your baby. I don’t think that they painted a picture with the broader strokes that they should be painted when it comes to that.

[00:18:02] And here to say that I am 40 years old having a baby. I’m a single mom. I’m by myself. I’m having a baby with a significant birth defect. And 10 years later, can’t even imagine my life without Easton. And all the people that he’s touched and the lives that he’s impacted. You asked me how my pregnancy was. From the time I found out to the time I had him was probably the worst time, because there’s that unknown. You don’t know what you’re gonna get. 

[00:18:34] Carole: Did the amnio give you some peace? 

[00:18:37] Jennifer: A little bit. There was no other defect or no other issue. And that was a 24-hour waiting period too before I found out the results of that amnio. So I had a 24-hour period where I really didn’t know if Easton was gonna make it or not.

[00:18:52] I did have a little bit of peace, but my faith gave me the bigger peace that was there. I just knew that without the sequence of events, of not supposed to be able to ever get pregnant and then getting pregnant and at my age and just everything that just kind of fell into place the way that it should.

[00:19:12] I just knew that I was there to raise this child. I just knew that that was part of my job and part of my calling. And it was not my decision whether Easton came into this world or not. It just wasn’t. And I have always looked at it that way. 

[00:19:29] Carole: That must be peace in and of itself that you were so clear. I imagine that for some people they don’t necessarily have that clarity and that makes it worse.

[00:19:38] Jennifer: Very, very blessed that I had the most clarity of anything in my whole life that I’ve ever had. 

[00:19:44] Carole: So what was it like when you were there and going into labor? 

[00:19:47] Jennifer: I would say 99.5% schedule a C-section. So I picked the greatest birthday in the world for this kid, which was 1/11/11, ones all the way across. I woke up on the 10th in labor. Once again, a reminder that I’m not in control or in charge. And we called into my doctor and he said, you know, I’ll meet you at Vanderbilt. Looks like this baby wants to come today. Said okay. With babies with significant spina bifida, within 24 hours of their birth, they go and get their back closed. They have back surgery. So this whole schedule was thrown off by me going into labor. By the grace of God, the neurosurgeon had the opening to be able to take Easton within 17 hours old when they took him back and line it all up. And it was the worst snowstorm and ice storm that Nashville had had in 40 years.

[00:20:46] We got stuck on the way to the hospital. Easton loves to hear the story about how we almost didn’t make it to the hospital and all of that fun stuff, but we made it.

[00:20:54] Carole: What was one story?

[00:20:56] Jennifer: The roads were just so icy and so bad. And I had a little Honda Accord at the time. And we’re trying to get out of the neighborhood and it’s uphill and we keep sliding. Like we were literally stuck. We slid back into a snow drift. I’m in labor. I had a friend who had a pickup truck, so I texted him and I said, are you out and about running errands? And he texted me back and he said, yeah, what you need? I said, are you in your truck? He texted me back and said yeah. I said I’m in labor and we’re stuck and I need you to come get me.

[00:21:24] And he called me and he’s like, what are you doing texting me? I’m on my way. So he pulled us out and we were finally on our way, but it was very slow going because it was so bad. So we walk into the hospital and they’re like, we expected you hours ago. 

[00:21:42] Carole: Yeah, that is a good story. I can see why Easton likes to hear it. For people that have no idea of what it means to be born with this idea that your back is actually open. 

[00:22:00] Jennifer: They actually call it the snowflake disease also because no two cases are exactly the same. So the defect can go anywhere from on your spine to like right under the base of your neck, like your cervical region, all the way down to your sacral region, which is your tailbone. And anywhere in between.

[00:22:16] So the birth defect could be anywhere on the spine. It really depends on number one, where it is. So that controls how much function you have because obviously encased in your spine is the spinal cord. So all those nerves are affected. So the severity depends on where it is on the back. Sometimes the nerves are outside of the spinal cord when they’re born. It depends on how the closure takes place and none of that can be predicted. And you can have two children side by side that have a defect in the same range. And their level of function could be completely different. For some children, there’s a cognitive effect, developmental delays. For others, there’s not, and it’s just physical. So it was the broad range of your child’s gonna be a vegetable, he’s never gonna walk, he’s never gonna talk, he’s never gonna have a quality of life. You’re gonna have all these medical bills or you’re gonna have procedure after procedure. All of this. Just on and on and on and on. 

[00:23:16] I found a Facebook group and I joined the support group. And the first thing they told me is don’t Google. Come talk to the moms and dads that are living this every day. And I did. And that is the one thing that honestly, other than my faith, it’s the one thing that got me through, because they said that from this point to the time you have him will be the worst time.

[00:23:38] But when you lay your eyes on him and he becomes like this real deal. Spina bifida was not even on my radar. It just was a nonissue once he was born. It was just like, why did I even worry? What was I so worried about? Here, he’s perfect. I don’t care what anybody says. I just can’t say enough that doctors aren’t always right. They’re just not. I respect them. Don’t get me wrong. There’s a lot of good things that doctors do and have done for my son. It’s a lot of guessing based on what they do know and what they study. And spina bifida isn’t one of those things that a lot of doctors know a lot about. 

[00:24:21] Carole: What did you learn from the other families?

[00:24:24] Jennifer: It was so encouraging to me. They had a lot of meetups. Like once a month, the kids could get together and play. And I’m eight months pregnant and they invited me to one of these. And I actually got to lay eyes on children with spina bifida that were thriving and just talking to the moms and the dads and watching these kids and they’re happy.

[00:24:45] And they don’t know that they’re different or care. That was so encouraging. If I had any questions and what to expect and how are things going. And just from that side of things, support was unbelievable. Just unbelievable. 

[00:25:02] Carole: And did he need special care or did you need special instruction? We all do when we come home with a newborn.

[00:25:07] Jennifer: Sure, sure. All the rules went out the window. You don’t put a newborn on their belly, all this stuff. Well, Easton couldn’t be on his back. He had this huge scar on his back, so we had to get a wedge. So he’d sleep on his side, but he couldn’t put pressure on his back except for like diaper changes. The traditional advice you get as a new mom was out the window. 

[00:25:27] Carole: When our children are babies, you watch them develop. There are milestones and you watch those. How was it for you in that sense of you knowing that it wasn’t gonna be a typical development?

[00:25:40] Jennifer: There is a process, and this is the other thing that a lot of the moms helped me through in the support group. You have to go through a grieving process of that baby you thought you were gonna have isn’t gonna be the baby that you got. And so you have to adjust your dreams. It’s a paradigm shift. The great thing about that with Easton being an only child and being my first child was I didn’t have anything to compare it to.

[00:26:06] So the fact that he wasn’t moving his legs wasn’t alarming to me. I’d never had a baby before that did move their legs. It was a non-issue for me, because I just didn’t have anything to compare it to. I didn’t have that expectation. So everything that he did do just was that much more surprising and exciting and a blessing and a benchmark and a milestone.

[00:26:35] Because cognitively he was exceeding everything. And his little personality and everything just came out very, very soon. The great thing is he started going to spina bifida clinic when he was two weeks old. They had a comprehensive clinic at Vanderbilt, which was wonderful. They’re very proactive.

[00:26:57] They get you involved with orthopedics and GI and because everything can be affected by that. And they get you into physical therapy and occupational therapy before they’re even six months old. But silly me who’s never had a baby before, I didn’t know this wasn’t normal. That’s just what you do, right? 

[00:27:16] So that was the blessing of being a first-time mom, in that I didn’t, this is my normal. That I don’t have anything to compare it to or know that it’s not the way things go. 

[00:27:30] Carole: I wonder, all moms have imaginations. And I just wonder when you were pregnant, were you worrying that, or I don’t know what the word would be, but imagining all kinds of scenarios already, like before Easton was even born, that you knew your child was gonna be different. You didn’t know how different. 

[00:27:49] Jennifer: I did. I did. I just didn’t let myself go there. I honestly didn’t. I knew he would probably be in a wheelchair. That was the extent that I went to, but I couldn’t, even at that point, I couldn’t see that far ahead. Like I just, I couldn’t, and I don’t know whether it was just because it was self-preservation or whether it was just, I didn’t know to think that far ahead.

[00:28:15] All I could think about was when he was born. And then when he was born, all I could think about was getting to the next week. So it was always so incremental and the blessing in that is that the information and everything came in very small doses and keeping in touch with these other moms and seeing these other children that, yeah, that’s a possibility.

[00:28:38] But look at that kid, like he’s like flipping amazing, like he’s out there doing tricks in his wheelchair, so it never occurred to me that it was going to be a struggle or a burden. And it hasn’t been. 

[00:28:51] Carole: For you, was it a paradigm shift? 

[00:28:54] Jennifer: After he was diagnosed in utero, I did grieve. There are days even now that I have to grieve that he’s not where other kids his age are on certain things.

[00:29:07] He’s never gonna be able to get a varsity letter in sports. There are things that he’s just not gonna be able to do. And there are times where it’s hard. You can’t get on the playground equipment and those everyday things that most people take for granted, they can be struggles. I do have to grieve that every once in a while.

[00:29:29] I do have to say, and it’s okay for me to feel bad about this. And Easton has his own days where he has his pity party and we don’t have them often, but when he does, I let him feel it. Mom, why can’t I walk? Why can’t I be like my friends? Why can’t I? We go through this, but you know, we waller in it for a little bit. We feel it. And then we change our mindset and we move forward. And remember all the blessings and the good things that are coming from everything that has happened and will happen. 

[00:30:03] Carole: Yeah. 

[00:30:03] Jennifer: But there’s still grief. There’s grief in increments. Just because something hits you and you’re just like, oh, that will never happen. You know, I think about, yeah, he’s 10, but he’s gonna get his learner’s permit in five years. Right? So that’s a whole different thing I have to think about. He’s not gonna be able to do things like his other friends. There are things that you just have to grieve that it’s just not gonna be society’s standards of normal, but they’ll be our normal and it’ll be okay.

[00:30:33] We’ve always told Easton you can do anything anybody else does. You just have to do it differently and you gotta figure it out. That’s how it is. 

[00:30:43] Carole: The way you described the lower back being affected with the spine and his brain not being affected. His two legs, everything below his waist doesn’t move, but otherwise, everything above his waist moves as it would for anybody sitting?

[00:31:02] Jennifer: He actually has feeling down to his mid-thigh. So it’s like mid-thigh down. He can move his hips, he can swing his leg. He has a little bit of function in his right quad muscle, but he uses his hip a lot to swing that leg. But there’s no feeling. And there is no function from like mid-thigh down.

[00:31:27] There’s other organs that are affected, bowels and bladder and things like that. So you have to make accommodations for that. And sometimes it develops and sometimes it doesn’t develop. He doesn’t have feeling, but he functions like pretty much anybody else.

[00:31:42] Carole: So with his bowel and bladder, he has to just do something different than a typical child who goes to a toilet.

[00:31:48] Jennifer: Correct. He was in pullups for a really long time. And then when I thought he was ready, we started talking to his urologist and we do intermittent cathing. Now he’s in regular underwear. Every four hours, he goes and empties his bladder like everybody else. Well, not like everybody else, but he empties his bladder. And then he goes on his way. We have a nurse at school that takes care of that. We have it managed. It’s great. It’s just a little different. That’s all. 

[00:32:11] Carole: You figured it out. 

[00:32:12] Jennifer: You have to. 

[00:32:14] Carole: What’s it like for him do you think in school? I imagine it sounds like he has some great friends, but you know how school is. 

[00:32:21] Jennifer: That’s always a fear, but we’re very blessed in that he goes to a private school. So he’s been with the same kids since kindergarten. Most of which are fiercely protective of him. He is a social butterfly. He thinks that his particular school was put on this earth to promote social life. He has several friends that pretty much argue over who’s gonna carry his backpack and who’s gonna carry his stuff and help him with different things.

[00:32:49] So he has some very fiercely loyal, loyal friends. And they all have his back. There was one kid that was new and left Easton in the bathroom by himself. He can’t pull open the door and his best friend put the new kid up against the wall. And he says, don’t you ever leave Easton in there by himself. Got it? Got it. So like they just, they look out for him. They look out for him. And because he’s at a private school, he’s only the second kid in this institution that’s ever been through that’s in a wheelchair. Everybody knows who he is. Part of it’s his personality, he’s lovable, he’s an empath. And he’s got the kindest heart and he’s exuberant.

[00:33:29] He’s excited. And he just is a neat person. And people see that. And of course, he is also your typical 10-year-old, where he’s ornery and stubborn and can be emotional. I think most of his frustration comes at recess. He does have a friend who is excellent at soccer, and they’ve actually been getting him out on the basketball court and trying to teach him how to play soccer with his hands.

[00:33:52] All the boys are out playing football. And all the girls are playing four-square and he’s like, okay. Or all the kids are out playing basketball. And he does have a couple kids that try to involve him. Like kickball, they designate somebody to kick for him. And then he gets to do the bases, but he feels bad.

[00:34:07] He says, I always get out. Nobody in navigating his wheelchair. So, there are some kids that really recognize that. And I think that is where most of his anger and frustration and sadness come from. Thank goodness it’s fifth grade. This is the last year we really have to deal with recess. But I think a lot of his I hate spina bifida days come from really bad recess days.

[00:34:31] He’s just been left out and he sits on the sidelines and just kind of watches everybody. That’s been a struggle from the beginning. Sometimes he won’t want to do what you’re doing, I said, but the invitation in and of itself is gonna mean something to him. Hey, Easton, come play four-square with us. I said, it’s up to him. If he says, no, that’s on him.

[00:34:50] But if they asked to include him, they’re doing their part. Like I said, this has been an ongoing struggle and PE is usually never an issue because you’ve got teacher guidance and they’re really good at trying to find ways to adapt stuff. But at recess, it’s kind of like go do your own thing.

[00:35:08] There’s aids that are watching to make sure nobody’s, you know, they’re not killing each other out there or doing anything inappropriate. But it’s kind of like, it’s your own free time and you can’t make somebody play with somebody else. They get their little group together and they play football at recess or basketball at recess.

[00:35:25] He’s never expressed doing any adaptive league stuff other than the WCMX, which he absolutely loves. He loves going to skate parks. He is scared to do new things because he’s so scared of not doing it perfect for the first time. He does not leave any room for himself to learn. He has that immediate gratification or that I should be good at it right away. And doesn’t realize that the moment you pick up a basketball, you’re not gonna be able to just play basketball. I’m hoping he grows out of that. 

[00:35:55] Carole: Yeah, or he finds the right person that will lead him in. 

[00:35:58] Jennifer: Correct. 

[00:35:59] Carole: Do you work outside the home? 

[00:36:01] Jennifer: I did for the first seven years of his life. I worked full-time and I was a single mom. And not had to work since we’ve gotten married and my job is taking care of Easton. There are lots of appointments. There’s a lot of juggling going on. There’s a lot of hours on the phone with insurance companies and medical supplies and all of that stuff. So, I don’t work, but I’m hoping, you know, when he hits middle school, high school and he is a little bit more independent that I plan on going back to work.

[00:36:28] That was one of the other lessons I really had to learn. You have to set your pride aside and you have to not be afraid to ask for help because there is a village out there for you. I mean, no matter what your child’s disability is or how differently-abled your loved one is, there’s a village out there that is going through something very similar.

[00:36:48] And it is just about connecting yourself with that village and tapping into all the resources that are available and not being afraid to ask for it. Because it’s your loved one. This is your loved one. My family jokes around me because they’re like, yeah, your insurance turned you down for that. Did they know what they got into when they did that with you?

[00:37:11] No, they didn’t. Yes, it’s time-consuming, but there are so many resources. There’s somebody that’s been down that path before you, and if you can just allow those people into your life and accept their guidance and their wisdom and their experience. And even if it’s just somebody to listen and get that empathy and get that validation that you need, because we weren’t made to be moms, nurses, caretakers all at the same time, and it’s just, it’s overwhelming.

[00:37:42] And you just have to put that aside and say, is this in the best interest of the person that I’m taking care for? And is it in the best interest for me because I have to take care of myself in order to be the best for that person as well. 

[00:37:57] Carole: How do you take care of yourself? 

[00:38:00] Jennifer: Oh, not as good as I should, but I have gotten better at it. It’s having the village. It’s having constant reminders of people that are saying, what have you done for yourself? That ask that question. I work out. I’m a CrossFit junkie, so I work out three or four times a week. That’s my hour that is not about nobody else but me, nobody else. Take whatever time it is. You gotta carve it out. Even if it’s a 10-minute bath in the bathtub by yourself. There are days, trust me. If that’s all I got, I’m taking it. It is so important. You can’t, I mean, it’s so cliche, but you can’t drink from an empty cup. And you can’t, you just can’t replenish that person that you’re taking care of if you’re empty. So you have to find ways. And what works for me isn’t gonna work for everybody. But whatever your passion is, or if you like to read and escape or you like to run or whatever that is for you, you just have to make it a priority to do that. Can you do it every day? Not always, but do it a couple times a week.

[00:39:04] Call in favors, call in your friends. Hey, you know what? It’d be great if I could just go to the store by myself for an hour. Or whatever that is, you know, those little luxuries. So it is just about reminding yourself. And now Easton’s old enough where he can vocalize. Mom, you seem a little short today, are you okay? You know, what’s going on? And so I know when I start to affect him. And that’s when I kind of have to pull myself back in and say, okay, he’s picking up on what I’m laying down. He’s gonna call me out. It affects them, whether they acknowledge it or not. Kids are smart. 

[00:39:44] Carole: What is accessibility to you? And to Easton?

[00:39:48] Jennifer: I’m so glad you brought this up. It is something that is, I’m sure you’ve heard before, very frustrating. It’s education and trying to remember that people that are neurotypical and have never had to deal with somebody that has a disability, accessibility is it’s not something that they think about. It’s not that they’re being insensitive.

[00:40:08] It’s just that they don’t know any better. Now, the only exception to that in my eyes is parking in a handicap spot. When you don’t have a handicap tag and you know it’s wrong and you do it anyway. So it’s about education. And yeah, I’m that person that’s gonna call you out. There was a lot of retraining to do at this private school I went to. Even when Easton was in pre-K and at the public school, it’s like, hey, where’s your tag? Well, I’m just running in for a minute. I just gotta drop my kid’s lunch off. Really? Where am I gonna park? There’s a lot of education, but accessibility is just being able to access the same buildings, facilities, programs, whatever, as anybody else, despite the disability. Do you have enough parking spaces?

[00:40:52] One of the great things about the school Easton’s at is they didn’t have a path from the school out to the basketball court and they laid one down. So now he’s got a concrete path that he can get out to the basketball courts. Playgrounds are a huge thing. I’m in the middle of working on a project right now with the city of Bradenton and Rotary Clubs of Manatee county.

[00:41:12] We’re building an accessible playground. Because there’s not a public one in the entire county where kids can play side by side. It’s things people take for granted. And I have to tell you, when I started dating my husband and he met Easton, he said, I have to look at things differently than what I used to look at.

[00:41:30] Now, I go and say, okay, where are the handicapped parking spaces? Is there a ramp? Do we need a ramp? Is there enough room? How is he gonna get to that? Is there an elevator? There’s so much that I think about that I never used to think about because I didn’t have to. It’s not a matter of inconsideration. It’s just it’s you don’t have to.

[00:41:51] So he said it really opened his eyes and now he looks at everything through accessibility. And so it’s just a matter of training people, you know, how are you gonna take your kid to play on a playground? 

[00:42:02] Carole: So Jennifer, I’m trying to imagine the playground that you’re building. I have a little bit of an imagination and I have seen special swings and such. Can you describe what does it mean to have an accessible playground? 

[00:42:19] Jennifer: Logistically speaking, it’s a ground covering that children in wheelchairs, walkers have gait challenges, mobility issues, that it’s not something that’s going to hamper them. So it’s not mulch. It’s not chopped-up tires. It’s not Astroturf that gets wrinkled.

[00:42:37] It’s something where they can actually physically get on. It’s ramps connecting all the pieces of equipment. It’s the ability to have a place to put his wheelchair and transfer over so he can go on a slide. Having the ground covering being appropriate when he gets down there. It’s having little hidey holes for those autistic children that just want a little dark place where they can go hide and hang out.

[00:43:00] It’s the kids that have sensory issues that they have things they can touch and they can feel, and they can make sounds with, and they can do things with. They can play on a playground side by side with neurotypical kids. And it’s not any different for them. They can find a way to do it. They have what’s called a generational swing, which is you put your kid on a swing, and then there’s a swing for the mom or the dad facing them. And it looks almost like a seesaw, but you swing. And so you’re facing each other and the mom or the dad’s doing the pumping, but you’re swinging together facing each other. And then of course, there’s the swings that you just wheel the wheelchair right up on and lock ’em in and do all of that.

[00:43:40] So there’s so many different things that go into that, that not just with kids that have mobility challenges, but there’s so many different types of disabilities that are out there or differently-abled children, be it autistic or Down syndrome, or, you know, multiple sclerosis or any of those types of things. That a kid can go to a playground that’s been adapted for them and they can play like any other child that has access to any other playground.

[00:44:11] Carole: Am I wrong to assume that the idea here is that children that are neurotypical can have at it as well. 

[00:44:18] Jennifer: Absolutely. As a matter of fact, that is what is encouraged because most neurotypical children do not have the opportunity to interact with children that are differently-abled on a regular basis. And let’s face it, that’s how children learn is through play. That’s how they learn. So if I’m playing side by side with somebody that’s differently-able than me, I’m learning from them. I am exposed to something that I normally wouldn’t be exposed to. And that’s a great thing. Now there’ll be a playground that Easton can go to with his friends and we don’t have to worry about what’s Easton gonna do when we get there. 

[00:44:55] We want to encourage that intermingling and that socialization of exposing the differently-abled and the neurotypical to each other. Because they can learn so much from each other. And as children, we need to embrace those differences and teach them that it’s okay to be different. And it’s okay to have friends that are different. So that’s where the encouragement, we want them to play together. 

[00:45:19] Carole: How rare is it to have these kinds of playgrounds? It seems like it should be part of the ADA for every county to have a playground as you described. But I have a feeling that’s not what is reality.

[00:45:34] Jennifer: Most of the ADA laws come into effect with accessibility into a structure, parking spaces, bathrooms, those types of things. Playgrounds just don’t really fall into that and have never, and because most playgrounds are either owned or managed by a city or a county, which is government, the funding to convert the playgrounds that exist now into an accessible playground is excessive.

[00:46:06] And so that’s not something that they’re willing to do, and we’ve got a structure that’s standing and it’s just fine. So why are we gonna change that? So the funding just simply hasn’t been there to make that happen because it is an expensive process. But it’s necessary. I mean, I think every county should at least have one that is public, that all kids can go to.

[00:46:27] And it’s such a game-changer. It’s just that the funding’s not there because most of it is on government property. And unless you get an organization like Rotary that comes along and says, hey, this is our purpose. This is what we wanna do. This is the money we’re gonna work with you with, will you let us put this playground on your land?

[00:46:48] And then will you manage it when we’re done? And people just are not taking the initiative to make that happen. It is becoming a little bit more common. As a matter of fact, the playground equipment company we’ve been working with actually has an adaptive specialized program. They have a whole division now that’s for adaptive playgrounds.

[00:47:07] We did the research. We brought in physical therapists and occupational therapists. And let them look through the books and said, have at it, if you could build a playground for all your patients and clients, what would it look like and why? And what would you not put on there and why? And so we did the research, we did it all.

[00:47:29] Carole: So you started from scratch, it sounds like. 

[00:47:32] Jennifer: We did. When we moved back here, my brother has a son that is literally six weeks younger than Easton. And my mom wanted to take her grandkids to a playground to play. And there was not one here that they could play on together. So she approached the county. And got the runaround for a really long time.

[00:47:51] And then I was president of my local Rotary club and I invited my mom to come speak about it. They all knew Easton. At that point in time, he was very young. And they embraced it. And then we approached all the other Rotary clubs in the county and they said, heck yeah, let’s do this. We’ve gotten a lot of community support.

[00:48:10] We’ve gotten the support of the city government. It’s gonna be at a city park. We visited some of the accessible playgrounds around the state, just to kind of get an idea of what they did. It wasn’t just me. My mom was huge in this, but you know, the Rotary clubs of Manatee county formed a 501(c)(3) called Rotary Suncoast Playground Projects.

[00:48:30] And they are the ones that have worked tirelessly for the past six years, cutting through some of the government red tape and then having to switch over from, you know, one entity to the other and they’re the ones that have made this happen. They put the Rotary name behind it, and then they put the Rotary commitment and integrity behind it and just plowed on through.

[00:48:52] And it’s been amazing. I’ve just kind of sat in as a consultant, being mom of Easton and my mom’s dream to be able to have a playground for abled and differently-abled kids. I hoped to make that happen. 

[00:49:07] Carole: Is there anything that I haven’t asked you that you would like to talk about? 

[00:49:12] Jennifer: I just think that it’s important that people remember that people that are differently-abled are people and that it is a different world.

[00:49:21] And I just, I wanna encourage people that are the caretakers and the moms and the dads and the people that have to deal with the ongoing struggles. I just wanna encourage people to get that village, use those resources, take care of yourself for goodness sake. Just take care of yourself. And realize that every day is new.

[00:49:42] And I just wanna encourage people just to keep going and keep their eye on the prize. I mean, like I said, I wake up and I look at that little face every day and that’s what keeps me going, is just knowing I’m doing my part. 

[00:49:58] Carole: Thank you for speaking with us and sharing your wisdom and just opening up your life to us all so we can learn so much from you and Easton. 

[00:50:08] Jennifer: Well, thank you very much for having me. 

[00:50:11] Carole: Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends.

[00:50:29] Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

Episode Summary

George Estreich is an award-winning writer. In this episode, George talks about raising his daughter, Laura, who was born with Down syndrome.

Episode Notes

George Estreich is an award-winning writer whose work includes poetry, memoir, and non-fiction. He is also a musician who plays with the band Mule On Fire. In addition to writing and music. George is an activist, storyteller, husband, and father to Ellie and Laura.  George talks about raising his daughter, Laura, who was born with Down syndrome. And then he talks about biotechnology, disability, and the stories we tell ourselves. He discusses how all people are more than a single identity and not only are stereotypes untrue, but they are also incomplete.

For more information about Down syndrome, see here.

Find and follow George: https://georgeestreich.com/

Laura’s episode video with transcript: https://youtu.be/Su9LTiwiyGQ

Video with transcript of this episode: https://youtu.be/A5GHuyOK608

FROM THIS EPISODE:

The Shape of the Eye by George Estreich

Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves by George Estreich

Unexpected: Parenting, Prenatal Testing, and Down Syndrome by Alison Piepmeier with George Estreich and Rachel Adams

No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro

What Can a Body Do?: How We Meet the Built World by Sara Hendren

Alison Piepmeier

Alison’s blog: http://alisonpiepmeier.blogspot.com/

Unified Sports – Special Olympics

Individuals with Disabilities Education Act (IDEA)

Report from the Hastings Center about the marketing of NIPT: Bias and Inaccuracy in Marketing Noninvasive Prenatal Tests

College of Charleston

Show Less

Transcript

[00:00:00] George: Where’s that level of needing to step back as a parent and where do you surrender that protectiveness? And I think that’s always true, especially when children are young, but again, having a child with disabilities who, in Laura’s case, is no longer a child, it becomes that much more urgent. 

[00:00:27] Carole: George Estreich is an award-winning writer whose work includes poetry, memoir, and nonfiction. He is also a musician who plays with the band Mule on Fire. In addition to writing and music, George is an activist, storyteller, husband, and father to Laura and Ellie. In the previous episode, we heard from his daughter, Laura, a young woman with Down syndrome. If you have not yet listened, be sure to do so. You can also watch the interview on YouTube by clicking on the link in the show notes. 

[00:01:01] Welcome to Wisdom Shared, where parents and their children are the experts and where connection inspires change. I am your host, Carole Blueweiss. In this episode, we will hear a conversation with my special guest George Estreich, the father of Laura Estreich.

[00:01:18] We recorded this interview in two wide-ranging conversations. First, George talks about raising his daughter, Laura, who was born with Down syndrome. And then he talks about biotechnology, disability, and the stories we tell ourselves. By talking to George and reading his books and articles, I learned about how important language is, how people are more than a single identity and not only are stereotypes untrue, they are also incomplete. Both conversations opened my eyes to alternative ways of thinking about disability, language, storytelling, and biotechnology, which as you will learn has potential to do good and to do harm. Let’s listen.

[00:02:10] Welcome, George, to Wisdom Shared. 

[00:02:12] George: Thank you. 

[00:02:14] Carole: Is there a childhood memory that you’ve had that sticks with you today? 

[00:02:19] George: There are several. One that I wrote about in Fable and Futures was remembering being a student in fourth or fifth grade. And the extent to which I believed in intellect, believed in achievement, and believed in grades.

[00:02:38] This was just something that just seemed as factual as gravity to me. So what I write about in that book is seeing someone else’s report card and seeing an F on it, and just being shocked and unable to comprehend this. And looking back on that in terms of understanding how deeply rooted the belief in intellect, its value and power, was for me.

[00:03:04] And using that to think about what does it mean then to have a daughter with an intellectual disability and what sort of changes do we need to make as parents? But what sort of changes physicians and professionals need to make in terms of how they think about people? Because the default belief in intellect is so buried.

[00:03:24] And in each of us, it’s buried in our society’s incentives and so on and so forth. So, that memory for me was pretty stark. And I don’t think a lot about childhood memories, I just don’t. But that one was for me, in Fables and Futures, was a springboard to thinking about these kinds of things. 

[00:03:43] Carole: What triggered you to rethink that feeling? Or I suppose when you were writing, you started to question. 

[00:03:53] George: I’ve been thinking about this stuff since Laura came along. Since before. It wasn’t like Laura came along and I was like, huh, maybe being smart and being good aren’t the same thing. Maybe you can be smart and not empathetic or whatever. I mean, these things had occurred to me and were actually kind of important to me, but to have a child with Down syndrome really calls you on that belief.

[00:04:15] It’s one thing to say that I understand that intellect is only one power of the brain or that being smart is not the only thing. I think a lot of people would just agree to that as obvious, but to have a child with Down syndrome does require you to really rethink these things in a more than intellectual way.

[00:04:37] For most of both of my daughters’ lives, I’ve been an at-home dad. I still am, though I came back to teaching in the last 10 years or so. 

[00:04:44] Carole: Well, your students are lucky to have a professor for many reasons, but also just to have that viewpoint of that intelligence means many different things. And depending on who the person is in front of you, it can be different for different students. In my experience, that was frustrating. I felt like I was always labeled as a certain type of student, which was compared to the top student. 

[00:05:07] George: Right, right. And essays and memoirs probe all aspects of human experience. It’s not simply making an argument. Intellect is implicit in it. And we admire things that are witty, that are surprising, and that are deft with abstraction and all the rest and being talented with metaphor.

[00:05:26] That’s partly a matter of intellect, but at the same time, for me, the best nonfiction is a way to a broader view of people. It’s more than an intellectual performance. It’s more than a performance of wit. 

[00:05:39] Carole: Tell us about Laura. 

[00:05:41] George: Laura has turned 21 and she’s her own young woman. It’s funny. One thing you learn when you have a child with Down syndrome is that there are very set expectations for how people with Down syndrome are. And stereotype of being warm and cuddly and they’re placid, good-natured, loving, hugging, all that stuff. Laura has in general, a really positive outlook, but she also has just the same huge range of emotions as any of us. 

[00:06:13] What is she like? She likes music. She loves playing basketball. We were just at a basketball tournament this past weekend. There’s a really cool thing called Unified Sports. This is a really relatively new thing where people with and without disabilities play on the same team, and this is run through Special Olympics. So Laura has done that for a few years. She graduated from high school a couple of years ago, but she’s been generally included. That has been good for her, in that she sees herself as belonging. It was very important for us to have her included in the gen ed classroom to the greatest extent possible.

[00:06:50] She has really close friends, we are now looking forward to thinking about the next phase. Now that she’s turned 21 and thinking about the possibility of an apartment, what level of independent living will work for her. But when I say we’re thinking about that, me and my wife, it’s really talking with Laura and figuring out what she wants to do.

[00:07:10] What would she want to do in terms of work? How does she want to live? All these kinds of things. And that’s something we can talk about, too. Where’s that level of needing to step back as a parent? And where do you surrender that protectiveness? And I think that’s always true, especially when children are young, but again, having a child with disabilities, who in Laura’s case, is no longer a child, it becomes that much more urgent. 

[00:07:40] Carole: We all project into the future and wonder what life is going to be like later. And I think all parents think about their children when they leave the home. I wonder 21, that’s the transitional age. What does she want? Do you know that yet? And, what are her options?

[00:07:54] George: Laura would like to have an apartment of her own with a friend. And we’ve talked about that a lot. So, we’re talking about that now. It’s a little bit early to say what are the precise options. The general thing that I’ve always thought of is one, total independence is a fiction. We all need help in some way or another. We’re all interdependent. Two, how much independence can Laura have with some help?

[00:08:16] And that comes down to some really nuts and bolts things like riding the bus, going to the store, knowing the town, being able to use the apps on her phone to get around, things like that or using transportation that’s available to her. So, a lot of it is just about practicing and learning those things, which we do.

[00:08:34] I, you know, I’ll talk about this and I know that there are other parents listening who are in just completely different situations. Every town is different. How much people can do varies from person to person, level of acceptance for people with disabilities, to strength as a community, local funding for personal support workers.

[00:08:57] So this is the kind of thing where I want to try and eliminate issues as I see them, but I’m very low to extrapolate from my experience. Here’s what I’m doing, you should do it too. 

[00:09:10] Carole: Yeah, no, I think that’s really important. And yes, this is just your story, Laura’s story. And just like any story, you could probably be more eloquent about that, but the idea that it’s just a story, it’s not advice. It’s a great point what you say too because I think it’s important to say how every town is different. Every situation is so, so, so different. I, for example, was just in Alabama for a baseball tournament with my son. And I just happened to sit next to a mom and her daughter who I thought might have Down syndrome.

[00:09:41] I knew I was going to be interviewing you. And I thought to myself, I’m interviewing parents and asking them, how would you like to be talked to when someone sits and they want to say hi, they’re not sure exactly how to say hi. And I thought to myself, I’ve asked that question before. I need to say hi and I also would like to tell this mother about my podcast because she’s somebody that actually might want to listen and learn from.

[00:10:06] And so I went through that little internal struggle and I finally broke the ice and we started talking and she was lovely. And the girl was five years old and uses sign language. And the mom was telling me that in Alabama near Birmingham, the support and the opportunities that children with disabilities have is remarkable.

[00:10:28] And that’s why they moved there. And she’s a medical doctor, as is her husband. And they said it’s better there than in Seattle or Washington DC or in Boston. 

[00:10:39] George: Interesting. 

[00:10:40] Carole: So that just struck home to me too, what you just said. Your environment helps, but not everybody is lucky. 

[00:10:47] George: Well, this, this also goes to a larger idea of disability. One pretty basic idea is disability is created by context. In other words, I think when a lot of people think disability, they’re like, it’s the broken thing. It’s the missing leg, it is the inability to hear or to see. And that’s what’s called a medical model. It focuses only on the physical. The truth is that these things matter in context and they’re created in context. To give an example, and I believe this is from Joseph Shapiro, who had a great book called No Pity, and this was some years ago, but he used the example of, if I’m remembering right, about curb cuts for wheelchairs. So if you’re on a city block and there are no curb cuts and you’re in a wheelchair, you were essentially on an island in a vast city.

[00:11:45] Like, you’re there. If you have curb cuts, then your range of motion is, and possibilities, vastly expanded. The physical condition is the same, but the range of human interaction and possibility is vastly different depending on context. So that has to do with the built environment. But of course, also has to do with attitudes. To give an example, if everyone believes that people with Down syndrome are placid, happy, and love unsolicited hugs, then people with Down syndrome will be subjected to that. And then more than that, if they have a regular bad mood, like we all have, people expecting pure happiness will almost be surprised and betrayed.

[00:12:28] This is a long way off from what we were talking about too, but it pertains to how I think about disability in general. And especially for me, when Laura first came along, I was really focused on the chromosome. Down syndrome occurs as a result of one extra chromosome at the fusion of egg and sperm.

[00:12:48] Most people have 46, people with Down syndrome have an extra copy of the 21st chromosome, which is just a bundle of DNA, of instructions. And I was really focused on that. I made a lot of metaphors out of it, cause that’s what I do. I’m a poet. But in the end I came to realize that I was focusing so much on the biological and that I needed to attend more to the social.

[00:13:13] Carole: Those curbs were made for people in wheelchairs to be able to transverse. But they didn’t only just help people with disabilities. They helped moms who have strollers and they helped skateboarders. And that is also a very profound idea in terms of interdependence.

[00:13:33] George: Yeah, absolutely. The idea is just so common in thinking about disability, just the idea that making an improvement in accessibility, even if it’s originally targeted at one group, can have benefits far beyond that. Closed captions are another.

[00:13:51] That kind of makes sense if you understand, rather than there being a strict line between able and disabled, that we are all human beings with different levels of ability and are each of us over the life course, we’ll go from complete helplessness when we’re born to more capability and then less if we live long enough.

[00:14:12] So of course, it makes sense that something like a ramp would be helpful to many people beyond those for whom it’s intended. One of the best writers on this to my mind is named Sara Hendren and she has a wonderful recent book called What Can a Body Do? And she talks about disability and the world, but also the inventiveness with which people adapt environments around them. The idea that disability is a site of creativity, it’s a site of a new perspective for seeing the world. So yes, yes, absolutely. 

[00:14:53] Carole: The more and more that I speak with parents of children with challenges or disabilities, I realize that most everything that comes up is relevant to those of us who are lucky enough to live long enough.

[00:15:05] We’re all going to be potentially that some version of that situation where we need more accessibility, for example. I think more and more people are talking about it because I think COVID also changed, I think, a little bit of how people view certain things where now all of a sudden people without disabilities are starting to have to think the way people with disabilities have been thinking for a long time. Like the need to do various things that have just been part of everyday life.

[00:15:34] What is Laura’s relationship with her sister? 

[00:15:36] George: They’re five years apart. Ellie’s 26 and she lives across the country. They’ll talk on FaceTime. It’s a really good relationship, but this is the kind of thing, too, where I hesitate to say much because at their age, I think like they should speak for themselves.

[00:15:51] Ellie has the protectiveness you would expect. Laura adores and worships her. And they’ll argue over stuff too. That’s just the sister stuff. I remember that when Ellie went away to college, Laura had this kind of escalating campaign to keep her from leaving. And then, I think that it was, I think in the end she said that she was just going to go over Ellie’s room, I think as her art room or music room or something like that. Actually, it was just, she was very determined that this was not going to happen, but no, it’s been something to see it evolve. In The Shape of the Eye, I talked a little bit about them, how they interact and get along, but it’s such a time capsule now. That’s when Laura was three and Ellie was eight. 

[00:16:38] Carole: What does Ellie do now for work? 

[00:16:41] George: She works as a research associate at a think tank in Washington, DC. Laura talks about how she misses Ellie several times a week, but luckily we can at least video chat, which is a good thing. 

[00:16:55] Carole: You wrote in a few places that in writing The Shape of the Eye, that you spent time on your own misconceptions. What were those misconceptions you speak of?

[00:17:10] George: I knew almost nothing about Down syndrome when Laura came along. I think that it didn’t even occur to me to be like, oh, she’ll be like this. Certainly, ideas about the importance of intellect, which as I said, I would have sworn up and down, it’s just like intellectual achievement, what level of education you get to, college, whatever, it doesn’t matter.

[00:17:32] And I believe that, but still to have a child where you have to reconfigure those expectations it’s okay, well, maybe I’m not as pure in my expectations as I thought. So facing the idea on a gut level, as opposed to a debate or intellectual level, as one thing. Really thinking about the value of intellect.

[00:17:49] One thing I write about early in The Shape of the Eye was just this mistaken belief I had that the future was lost. And so in shock, and it’s just like, I don’t know what’s going to happen. And once you have that feeling, you realize that you have constructed a fairly detailed future of expectation.

[00:18:08] That idea is based on a pretty narrow, normal range of people, and an idea of normalcy. So expecting that, okay, well, one child will be the rebellious one and the other will be more responsible or something like that. Or maybe there’ll be one boy, one girl, because that’s balanced. And all of this stuff is within a range of unspoken ideas about normal, about the nuclear family, about all of these things.

[00:18:34] Then even though you wouldn’t have consciously said, I expect things will be this way. You realize the limits on your ordinary imagination when those limits are broken by an actual event. Those were some of the misconceptions I had. And then there was a secondary realization that you had those conceptions in the first place, that you had these ideas about normalcy, about intellect, and that they need at some point to be reckoned with.

[00:19:05] In my particular case, I was processing all of this. Theresa and I were talking about this stuff all the time. It was also a little bit of really putting things off, just because Laura’s first few months were medically dicey. That’s when she had her heart surgery. So there was a lot of just dealing with that stuff day to day.

[00:19:25] Those were a couple of the misconceptions. I think inevitably because the rethink is so total of your own assumptions of everything else. It pervades everything else too, pervades writing, for example, which is something I’m still thinking about. 

[00:19:43] Carole: In what way? 

[00:19:44] George: Well, just in the sense that writing is performing on an intellectual stage. If we’re talking about wit, if we’re talking about irony and metaphor and all the rest, these are higher-order intellectual operations, if you want to use some vaguely computer-ish language. I think about that. And I think about what it means to be performing on that stage while having a daughter with an intellectual disability.

[00:20:14] The other thing is that, and I talk about this a little bit in The Shape of the Eye, the idea that when Laura first came along, I was like, okay, I’ve got to research. I’ve got to understand Down syndrome. I have to understand what it means to have an extra chromosome. I have to think about all this. And I did. That was necessary.

[00:20:30] I needed to learn about it, I needed to think about it, but in, in time, what I realized I really needed to do was think about people in a different way. That I specifically needed to learn everything I could about Down syndrome and then that would be it. It was that I needed to think about people in a way that was capacious enough to welcome my daughter.

[00:20:51] And not as like person with asterisk or like full person but with challenges, but as just like, this is Laura’s way of being human, period. That just takes time. But if you think about people differently than that means, thinking about everything differently. Writing is about human mysteries. That means thinking about writing differently. 

[00:21:12] Disability is directly involved in politics, but it’s also, it’s disability metaphors are weaponized in politics all the time, insults against people for being less intelligent. So once you start to think about people and value and intellect, this is, all of this, I’m not a philosopher – 

[00:21:32] Carole: You’re saying in part that there are words that are, like you said, the R word, and I guess stupid would be one word that people just kind of use without thinking.

[00:21:44] George: Yeah. And I’m, to be fair, I’m trying to distinguish between using the word stupid or idiot, which I’ve used, will probably use again. I don’t want to lead this to just a paralyzed point where no one can say anything. I’m saying that there is a very specific way of using intellect as an insult that is toxic and troubling to me.

[00:22:06] Carole: You also said, and I wonder if this is related to what you’re saying now, that something about understanding those words in a different way. 

[00:22:16] George: One thing I have tried to do is, and this is just following people in disability studies, is to break that equation between disabled and sick, that you can be healthy and disabled.

[00:22:33] Carole: Yeah. 

[00:22:34] George: In the most troubling accounts of Down syndrome that I’ve read, it is treated as a disease and disease features are highlighted. So I would prefer to understand it as what it is, which is a collection of probabilities. Some of which entail health risks, for sure. But it’s not the same as being permanently sick.

[00:22:58] Carole: Yeah. You spoke about your potential to do damage by writing. Did I understand you correctly? 

[00:23:05] George: I think there’s always that potential, especially when one is writing about disability, as I do as a non-disabled person, one can do damage by overgeneralizing from one’s own experience. 

[00:23:21] Carole: Okay. 

[00:23:21] George: So by saying like, this is how it is for Laura and therefore this is how it is. That would, I think, ultimately be a disservice to Laura. She’s one person. And part of the point is that people with Down syndrome are not all the same. So I would rather bear witness to this one actual case as against the generalized stereotype. So that’s one way in which one can do damage, how one can be damaged by talking over people who have the experiences that I don’t have and can’t have. One can mean well and be too certain, too definite, like this is how it is. And so those are a couple of ways. 

[00:24:02] Carole: Now I understand. Yeah. Something that you wrote that I loved. I’m going to just read it here. “More important than whether we study Down syndrome is why. Is research meant to treat, to prevent, to shed light on some other condition? But then to consider why we study Down syndrome is to consider your first question about what’s normal or healthy.

[00:24:27] In my picture of the world, Down syndrome is one way to be human. It’s part of the normal range of variation. And though it entails many health risks, you can also have it and be healthy. To me, beliefs about these questions underlie the research on the condition. And so open discussion about those beliefs is necessary. And since story offers an understanding of life that a karyotype cannot, stories need to be part of the discussion.” 

[00:24:57] I just love your perspective. It’s not necessarily a, like you said, a medical problem. Everybody’s so different. Everything is much more complex than we give it credit for. 

[00:25:09] George: Yeah. A story can be a useful tool for bringing the complexity of experience to people who are unfamiliar with that experience. They can suggest that experience. No, you can’t know what it’s like to raise a child with Down syndrome until you’ve done it. And even then, you know what it’s like to raise that child with Down syndrome. But story can suggest it to other people and begin to maybe chip away at ignorance, if that’s the case. That said, the flip side of that belief is that story can be incredibly dangerous, that it is equally possible to tell a very powerful story in which, for example, a child with disability is the ruin of a family or a child with a disability is purely an angel whose main role seems to be to uplift other people or be a beacon rather than just live a life for herself.

[00:26:05] I think story is potentially very powerful, but it’s definitely not a universal good. The other thing I would say too, a lot of what determines the contours of disabled lives has nothing to do with story. It’s obscure rules, insurer’s policies, things like that. And those have nothing to do with stories. They might be just a subsection of a law somewhere, but it could make a huge difference as to do you get to live independently or not? What level of support is available to you? So, it’s yes. 

[00:26:43] Carole: Constraints. 

[00:26:45] George: Constraints, constraints. And so, yeah, story’s a powerful tool, but it’s not an ultimately powerful tool.

[00:26:52] Carole: It could be used for good or evil. You had mentioned about education and your belief that it was important for Laura to be included in the public school system. Correct me if I’m wrong. 

[00:27:03] George: Well in the public school, but also in the general education classroom. 

[00:27:06] Carole: You had written very poignantly that it was only 1975 when there was actually a law mandating that children with intellectual disabilities have access to that. So do you want to tell us a little bit about that and why you think it’s important? 

[00:27:23] George: Well that legislation is now the acronym IDEA, the Individuals with Disabilities Education Act. I think it was originally the Education for All Handicapped Children Act, but basically that before 1975, when I turned 11 and children with intellectual disabilities did not have a right to attend public school, there were increasing numbers of districts that did have special education classes, but there was no right in the United States. So Laura entered kindergarten in 2006, I believe. By then, the right had been long established, but as many parents can tell you, the fact that the legal right is there does not make things automatically easy.

[00:28:14] We’ve been relatively fortunate, but it can be very, very wearing to try and get access to the general education class, which means having lessons adapted to a doable level, having students participate in a meaningful way, as opposed to being in a separate classroom. Laura spent most of her time in the gen ed classroom, but she would be pulled out for things like speech therapy.

[00:28:41] And as time went on, for some things like math, which were not necessarily really adaptable, like for her, that would be separate. So it was kind of a split model. Why did it matter? I think the outcomes were better. I think that being around others and having higher expectations led Laura to strive for more, but it’s also that she understood the entire school as her community.

[00:29:09] And other students understood that she was a part of things. And I don’t want to make this too, you know, sunny and perfect like to suggest that there were no problems. That wouldn’t be true, or to suggest that there is no ableism in the world. That’s just not accurate. But I will say that things have come a long, long way since when I was in elementary school and middle school, where I understood that there was such a thing as a special ed class, but it was just completely remote down the hall.

[00:29:38] There was really no interaction between that population and the gen ed population. So I think that the benefits have really been there for Laura and the people she knew. She still knows she has friends who are disabled and who are not. That’s a really meaningful thing.

[00:29:54] Carole: Yeah. And I’m sure for the kids that were not disabled, just as meaningful for them.

[00:30:01] George: I think so. It’s the kind of thing where like talking to other parents, it varies from school to school, from town to town, from kid to kid within the same school. But in the main, we’ve been really, really fortunate in the people that we’ve been able to work with. 

[00:30:17] Carole: Was she bullied in school? 

[00:30:20] George: There were a couple of minor incidents, but it was not what we feared. But there were a couple of things that we had to sort out, but they were honestly in our experience, pretty minor, especially compared to what we worried about. So, no. I mean, she got a remarkable amount of support. That’s the other thing that is one advantage of inclusion is I think that having come up with the same group of kids through elementary school, was to some extent protective like people cared about her. They stood up for her. I believe pretty strongly in inclusion.

[00:31:01] But again, this is something too where it’s very hard to be absolute and hard and fast. I think there probably may be some situations where a separate placement is useful, but in general, I’ve been a very strong advocate for inclusion in the gen ed class.

[00:31:18] Carole: If you were to give advice to parents who are just learning that, you know, their child has Down syndrome, or maybe advice later on in life, do you have anything you’d like to say? 

[00:31:30] George: It’s going to sound really hypocritical because I’ve just been saying every situation is different and I’m not a template, blah, blah, blah. But sure, here goes. For those parents who like me, at the news of the diagnosis, and immediately started reading everything in sight, don’t do that. I mean, it may be inevitable if you’re like me and you believe in research and learning everything.

[00:31:50] But if you think about it, most of what is written about Down syndrome specifically may not apply to your child. Down syndrome is a collection of probabilities. Like if you start reading about Down syndrome, you get this huge long list and it’s all things that can go wrong. But the fact is like, your child has those things or he doesn’t, or she doesn’t. It’s easy to freak out going like, oh my God, look at this heart defect, this thing, this thing.

[00:32:20] And then you start to look and so the percentage of that is maybe 2% chance and it is correctable. Or you start to understand the probabilities. It’s kind of like Down syndrome itself. Your child has it or doesn’t. And so one piece of advice would be not to worry about the things that your kid doesn’t have.

[00:32:39] The other thing, and this is for just really new parents. The one thing I would say is congratulations. It is the one thing that people really forget to say, or it’s congratulations with an asterisk, or it’s like, here’s all the stuff you have to worry about. And here’s the lawyer now so your child can participate in soccer or whatever.

[00:32:59] And it’s just like, the main thing is, congratulations, you have a new child. So that’s not so much advice as just a re-set. 

[00:33:06] Carole: Talking to the parents who have friends that have a child, like instead of being in the same way, like, oh my God, what does this mean for this friend of mine? To start by congratulating them like you would any friend.

[00:33:18] George: Yeah. It’s just congratulations is the starting point. That should be okay for advice, I think. Take the internet with a grain of salt and congratulations. That’s not a bad place to start for people, especially with, who have a new child with Down syndrome. 

[00:33:32] Carole: And now a question about advice for those of us who have friends that have children with Down syndrome.

[00:33:39] George: Early on, a lot of people felt compelled to say what it meant.

[00:33:43] Carole: What do you mean? 

[00:33:44] George: Well, just to say what they can achieve a lot these days, or there are a couple of strangers, ‘why didn’t you test?’ A diagnosis like this is an x-ray. It really shows you what people are thinking. They just revealed themselves. So the best thing to do is just to be a considerate human being.

[00:34:02] And if it’s a friend of yours, just what do you need? If a parent needs to talk, then listen. If they’re too tired to cook, bring them a casserole. I think that more general answer to your question is, well, what would you do if the child did not have a disability? It’s like, start there, because maybe the answer isn’t any different.

[00:34:22] I mean, if someone just had a child and to all appearances, normal and destined for a happy life, which no one knows what that’ll look like anyway, you would say, congratulations. You would celebrate. You would listen. So this has come up with Laura a lot. The question you’re asking is just like, okay, what should I do in this case?

[00:34:42] And often my first response is like, well, do we need to do anything different? So when Laura first took a dance class, the teacher was great and she wanted to know what accommodations can I make? Wonderful. And my first thing is like, let’s see, maybe we don’t need to do anything different or maybe there do need to be some like more concrete directions or something, but we’ll figure that out as we go. But maybe the first thing to do is to not make it an issue. 

[00:35:12] Carole: For her to ask that question, I think it’s better to err on the side of, cause she doesn’t know, you know, if your answer could have been different, like she needs a step stool or something.

[00:35:21] George: Right. 

[00:35:22] Carole: There’s that emotional, that visceral something that happens if you see someone who’s different than yourself or if it’s something that you’ve never experienced. So there’s that experience of feeling that otherness. 

[00:35:34] George: Yeah, sure. Not to be too harsh, but that experience of discomfort is not limited to disability. Some people have it around ethnicity, some people have it around sexual orientation or expression. And I guess if people are just uncomfortable with that difference, it might be good to just work on it somewhere else. Definitely don’t make the person with whom you’re uncomfortable responsible for alleviating that feeling or helping you process it. So I think I can speak for most of us saying we’re not interested in helping other people process their discomfort, you know, maybe in some friendships it’s close enough that that can be part of it.

[00:36:20] But I think in that situation, it should be about the parent and that’s something for the uncomfortable person to kind of work on quietly on their own. 

[00:36:31] Carole: Yeah, yeah. Thank you. I appreciate that honest answer. I would love for you to read some excerpts from your book. 

[00:36:38] George: I was thinking about what to choose, and this is from The Shape of the Eye. This relates actually directly to the things that we were talking about is my changing ideas about Down syndrome, as, not just as a father, but as a writer. This chapter comes after Laura’s first year, where she had had heart surgery and emergency hospitalization and a feeding disorder, which took a long time to recover from. And so, it came at a moment of comparative calm when things were beginning to settle out. This is partly about writing and partly about coming to understand Down syndrome in a different way.

[00:37:21] “To write a book about a child with Down syndrome as that child grows is to understand that life is water. It runs, slips, evaporates, changes course. And what seems an eternal truth, a child on a ventilator, a child who won’t eat, the child who hasn’t spoken, evaporates, leaving a changing present. 

[00:37:43] Already, Laura’s heart surgery felt long ago. She still took her heart medicine and we still went to the weird-smelling compounding pharmacy to get it. But cardiology was a footnote now, not the main story. So the story I had to tell was changing, too. For a year, I had felt like a parent to one child and a triage nurse to another. In the shock of diagnosis, I saw only the differences between them, the perforated heart, the changed brain, the slack muscle tone, the extra chromosome.

[00:38:11] And yet these facts were as deceptive as they were verifiably true. The differences were real, but their meaning was less fateful than I had supposed. This was true, I was learning, not only for hearts and brains, but for chromosomes as well. Until then, I’d contented myself with a simple understanding of molecular genetics.

[00:38:30] Laura had one extra chromosome which caused all the damn trouble. This was convenient for a writer. It was easier to riff on chromosomes if you didn’t actually know what they did, but it was becoming clear to me that making metaphors from chromosomes without at least a rudimentary understanding of how they worked might not be without its problems.

[00:38:47] That understanding a genetic disorder might mean understanding something about genes. I began to look things up and to talk about what I had learned, which produced the smile Theresa gets when I try to talk about science. It’s not, she said, as simple as having one extra chromosome, it’s that there’s more protein overexpressed.

[00:39:06] She explained: a chromosome is not a thing, a mysterious totemic object. It’s a set of directions for producing proteins. Without these directions, no fertilized egg could develop into a child. No child could live the complex miracle of embryology and the ordinary miracle of maintaining cell pH and everything in between are modulated by proteins synthesized in the proper quantities and at the proper time.

[00:39:31] Since Laura had one more 21st chromosome than most other people, each of her cells had in effect a surfeit of directions. The proteins are overexpressed. This had not only affected her embryonic development but continues to affect her in the present. The more I learned about the 47th chromosome, the less it lent itself to metaphor. I’d compared the chromosome to a black mark, the missing apostrophe in Down syndrome, the weight that pulled us away from other parents. These metaphors, though true to the way I felt, had their limitations.

[00:40:00] First, they treated the chromosome as static and singular rather than dynamic and multiple. In so doing, I ignored the chromosome’s function, its connection to the past of the species and its role in the daily work of the body. Second, by isolating the chromosome as extra, I reinforced Laura’s separation from other bisomic children.

[00:40:19] Third, I allowed myself to trace all our troubles to a single biological cause. I had seen my lyrical sentences as a way of resisting an impersonal diagnosis and of witnessing to Laura’s true dignity as a human being. It had not occurred to me that my metaphors might be complicit in everything I was trying to combat.

[00:40:39] I was learning again the lesson I’d been learning all year. As a father and a writer, I would need to avoid the dead ends, the red herrings, the patterns both obvious and false. I’d begun by assuming that Laura was essentially different from me. Because I believed this, I had isolated the heart, the chromosome, the eyes, and focused on what was different about them. In doing so, I had failed to see what she and I shared.” 

[00:41:03] Carole: Hmm, that’s just so beautiful. I love your writing. 

[00:41:06] George: Thank you.

[00:41:12] Carole: I’m here with George Estreich, author and father of Laura. We’ve been discussing his memoir The Shape of the Eye. I sat down with George on another day to discuss his award-winning book, Fables and Futures, and other far-reaching topics. We will hear why George wrote this book and his thoughts about disability, biotechnology, and the implications of language and storytelling in a more broad sense.

[00:41:35] I’m going to read something that articulates so well why you wrote The Shape of the Eye. You say “Before Laura came along, people with intellectual disabilities lived in the periphery of my vision. Laura’s arrival thrust disability from the periphery to the center. And in response to that dislocation, I wrote a memoir.

[00:41:58] I had many reasons for doing so, but one was that since the attention Laura drew was inevitable, I might as well work with it. If people were going to stare, I might as well lend some depth to the picture. They were, as I found, often staring at a projection. Call it a huggable ghost, a vague shape, a diagnosis with a personality, a mix of sweetness and tragedy, of angels and heart defects and maternal age.

[00:42:27] That is a way of imagining Down syndrome and not the worst way, but it hides the individual. The projection, the ghost, obscures the child. This book had its genesis in that one. In writing the memoir, I came to understand that questions about Down syndrome are really questions about disability. That questions about disability are questions about who counts as human.

[00:42:49] That these questions are inextricable from our understanding of cutting-edge biotechnologies and that because few of us are experts.” I stop at the word expert because I consider the parents that I interview experts on their own experience. You definitely have an expertise on being able to explain a very complicated industry.

[00:43:13] Why did you write Fables and Futures

[00:43:16] George: Fables and Futures grew out of a lot of the things I began to think about while I was writing The Shape of the Eye. In The Shape of the Eye, it’s mainly a narrative, it’s a memoir, but it takes some excursions into thinking about technologies, prenatal testing, and the possibility of genetic engineering of people.

[00:43:34] And so I got interested in that and I wanted to explore some of the ideas I’d begun to think about. And I also wanted to do something that was maybe a little bit less personal, in that I’d written a book of poems before The Shape of the Eye, that was very personal. The Shape of the Eye was very personal in a conventional sense. It was very much about me. 

[00:43:56] And so Fables and Futures has storytelling, it has stories about me and Laura, but it’s really more outward directed, thinking about technology, thinking about disability in a broader sense than just Down syndrome. So I started some explorations in The Shape of the Eye and I continue them in Fables and Futures.

[00:44:14] Carole: You wrote that there are several problems with using a negative portrait of disability to sell biotechnology. 

[00:44:22] George: Right. 

[00:44:23] Carole: Can you explain what you mean by that?

[00:44:26] George: I did most of my thinking about this initially with thinking about prenatal tests and specifically noninvasive prenatal tests, which estimate the likelihood of Down syndrome and some other chromosomal conditions based on a maternal blood draw. Because these are for-profit tests, what I often found was that the advertising for the tests would offer idealized images, not just of chromosomally normal children, but of beautiful normal families in which no one was disabled, but also would offer negative portraits of the conditions being tested for. To me, that was problematic. It seemed that the profit motive was influencing the portrait of disability.

[00:45:20] And that was at cross purposes with people who might see disability simply as part of identity, as a basis for pride, as a basis for creativity, as simply a way of being human, that those visions were incompatible. It’s a special case of the problem of negative portraits of disabilities and people with disabilities in general, but because it’s joined to a technology with reach, it’s potentially more concerning.

[00:45:53] Carole: I want to dive into this a bit because I have stars and red underlining and so many things. Like some of your articles that you wrote, because I was just like, no way. Oh my God, no kidding. I’m going to say this for you. You wrote it. “I don’t oppose the tests, which many have found useful.” You’re not like anti-testing, but you say the ads, the fact of ads, as well as their substance are deeply problematic.

[00:46:18] Not only for people with disabilities, but also for the women they target. So do you want to say a little bit about that? Like what, what about these women that are pregnant and are deciding whether they get tested or not to get tested and are sitting with some results? 

[00:46:33] George: So I should acknowledge before saying anything, one, this is incredibly thorny because would never have been, am never going to be someone who faces the use of these tests directly. For that reason, I try to constrain pretty strictly what I speak about. I come from a pro-choice standpoint, I’m pretty open about that in all my writing, but I don’t make my family’s choice a template for anyone else’s.

[00:47:00] And I have really nothing to say about whether a woman uses a test. She should use it if she finds it useful. Or what she does with that test. That’s just a no fly zone for me. What I’m interested in is the climate of assumption. What are the ideas about testable conditions about disability that feed into the use of the test?

[00:47:22] That’s all the caveats. I think the problem for women using the tests is that there is a basic conflict between advertising for prenatal test and the ideal of genetic counseling, which is to be non-directive. This is one thing that I wrote about is that ads are directive. The best genetic counselor will seek to listen to perspective parents’ values and help them come to a decision in line with their own values, not to nudge them subtly or otherwise to uptake of a test or not uptake to the test.

[00:48:02] Okay? So there’s a problem in the ads being directive. There’s a problem in their being misleading. There is a study that just recently came out from Hastings Center reports of brochures for NIPT, what’s called non-invasive prenatal testing or NIPS for non-invasive prenatal screening or more and more CFDNA for cell-free DNA tests.

[00:48:24] It’s all the same thing. But the study was a comprehensive survey of brochures, materials advertising these tests and found that they were often misleading, that they exaggerated the certainty of the test. They made them sound diagnostic and certain which they are not. And so forth. So having misleading information, especially when it’s technically legally accurate, I think, is bound to lead to confusion.

[00:48:51] So that’s a problem, but there’s also the problem of advertising at all. I mean, if you think about it, advertising is composed of a host of appeals and some of them are direct and some of them are coded to show an image of a happy family with a chromosomally normal child cavorting in a meadow. I don’t know what woman needs that to think through her choices about her own body.

[00:49:15] That’s about driving uptake of the test and then profit. It’s not something that anyone needs to help them make an incredibly personal decision. So to some extent, again, I’m like, as you rightly said, I’m not focused on the test per se. I am more interested in the way that it’s sold. 

[00:49:37] In a more recent piece, I talked about how another NIPT is pretty good at revealing fetal sex. And so it has been also marketed to people who want to throw an earlier gender reveal party. And in fact, one company has sponsored blog posts by parents who have cut into a cake to find pink filling or whatever. And so that’s problematic, too. That, to me, that’s just about the market. 

[00:50:03] Carole: So many things you just said, I wanted to put an exclamation point that the idea that first of all, there’s a lot of numbers that are being thrown out as meaning this, meaning that, from what you say, the onus is on the parents to decode what those statistics mean.

[00:50:19] And the companies don’t feel it’s their responsibility to necessarily really understand. Or like you said, it’s a profit motive. So there’s that sort of attitude that who’s helping the parents really understand this information? 

[00:50:32] George: In fairness, I think there are many doctors who do a really wonderful job of doing this. There are many doctors who are very direct and very helpful, and I think company information in ads has gotten better over the years under pressure. Now, the more common the condition is, the better the tests do. The rarer the condition, the lower the prevalence, the less well the tests do. The gist of the article was that many women were made very, very anxious about results that turned out to be indicated language like condition detected, which sounds certain and then it turned out to be not the case. 

[00:51:14] Carole: And then you get into too the doctors that have the luxury of spending a little bit more time with patients versus those doctors that are maybe in more lower income clinics that just, I dunno if I’m probably saying something politically incorrect, but definitely you need the time with the doctor.

[00:51:29] George: I think that questions of economics are shot through all of this, that we can’t talk probabilities in the abstract. There are factors like the time crunch on doctors, the fact that explaining complicated statistical truths takes more time than the whatever 12 minutes you’re allotted, the fact that not everyone can necessarily afford these tests in the first place.

[00:51:53] There’s the incentive, I think, on the part of medical professionals to recommend the test because of the possibility of a wrongful birth suit, which is to say, if someone has an affected child and said, why didn’t someone recommend a test? 

[00:52:07] Carole: You wrote that one of the things that concerns you is the people are looking for intelligence screenings, not necessarily health.

[00:52:16] George: The prospect of being intellectually disabled or having a child that’s intellectually disabled is fearful to parents who understand how this economy works and how often it fails to accommodate those who, for whom this world isn’t built. But that’s a lot of people, not just intellectually disabled people. 

[00:52:33] Carole: That’s very profound to me that this isn’t saying it exactly right, it’s not the diagnosis or the child, that it’s the society that is not doing what it needs to do to make it okay for any child. 

[00:52:46] George: I would say it’s always both, right? In the case of Down syndrome specifically, I would never deny that there are challenges that come from Down syndrome. And I think that there are conditions more or less severe that can be accommodated more or less.

[00:53:01] I don’t think there’s any perfect physical and governmental arrangement in which everyone will be perfectly at home. That said, I think we can do so much better. This is really a world built for the young and able who can drive. If you have tried to help an aging parent, someone with a disability and so on, you realize certainly things are better than they were 40 years ago in many ways, but boy, is there long way to go.

[00:53:33] Carole: Yeah, that’s for sure. And then the idea of blurring the distinctions between disability and disease. I thought that was really interesting, that you say demits the perspective of many with disabilities that also relates to our elderly population, but would you like to say more about that, that what you mean by that blur?

[00:53:53] George: A late friend of mine, Alison Piepmeier, who wrote the book Unexpected, which I also worked on, called disability an embraceable form of diversity, which I always liked. Often, disability is treated only as disease, as something to prevent, fix, or cure. People’s views of their own disabilities vary obviously all over the map, but a simple equation of disability and disease almost always tends to lead to stigma.

[00:54:25] Carole: One thing that I think is important to talk about, you mentioned how with Down syndrome and with many disabilities, there’s that stereotype that happens. And I thought that was really important to understand because I’m probably guilty of that. You’ve thought deeply about it. So I’m just going to give you the floor. Why is that dangerous and why do you think that even happens? That people just make it such a simple prototype as if everyone’s the same? 

[00:54:53] George: It’s obviously not restricted to Down syndrome. The stereotypes of Down syndrome is that they’re all sweet. They’re all good-natured. They’re all placid. This is not true.

[00:55:04] Stereotypes only thrive where you don’t know people. Or if you’ve met people, but aren’t really listening to them. I see that happen a lot. I used to measure it in terms of the octave range of people’s voices. If people met Laura, their octave voice would jump two octaves. Laura is 21 now. And ideas about disability, the welcome of disability is changing really fast. I think it’s changed since she was born. And one very informal anecdotal measure of change for me is the fact that more and more people meet her and they say, ‘hi, Laura.’ It’s not a big deal. And that’s a welcome change to me. Your question was about stereotype and I think the good-natured thing is problematic.

[00:55:49] One, because it’s so bifurcated that on the one hand, people with Down syndrome are seen as good-natured. And on the other hand, they’re seen as examples of bad nature, as defect, as abnormal. And so I don’t see how those fit together. They just sound like really sick golden retrievers or something. And there, my point is that they’re actually people, they’re individuals.

[00:56:12] That’s a lot of what I try and get across. That’s why I’m glad Laura got a chance to just speak for herself today. The thing about stereotypes is like, even if they’re nominally positive, they’re still a kind of dismissal. Like even if it’s a nice thing to say, as opposed to a really toxic thing to say, it’s still subordinating the individual to this group.

[00:56:34] And it’s still because Down syndrome is a genetic condition, implies a genetic determinism, which is to say who you are is because of your chromosome, because of your genes, who you are is encoded and fated. And I am skeptical of that belief for Laura.

[00:56:59] Parents definitely do get a little bit like, oh, I could never do what you do, that kind of thing. And it’s just sad. It’s like one wants life to be ordinary. So to be called inspiring and extraordinary and all that stuff is maybe a little bit unwelcome and reading what others have had to say about this is it’s I think often unwelcome because it is just a hair’s breadth away from pity and maybe another hair’s breadth away from like, thank God I’m not you. 

[00:57:32] Even if it is with good intentions, whatever that means. And this goes back to what we were talking about in our first conversation. You were asking about what should people say to new parents or what do people say. For me, at least, questions like how are doing, how are things were better than judgments.

[00:57:53] One doesn’t necessarily want speculations or answers or to be told what one’s life means just when you’re working it out. The meaning is something that you want to own. So even to be told that, oh, you’re inspiring. It’s like, yeah. You know. 

[00:58:11] Carole: Yeah, it’s well-intentioned, but it doesn’t work that way. I do want you to read your chosen excerpt.

[00:58:18] George: I’m reading from the book, Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves. I’m reading from the beginning of chapter six, which describes a visit to the National Society of Genetic Counselors annual education conference, where I went to present some preliminary work on ads for prenatal tests.

[00:58:40] So the things we were talking about before, my questions and issues with advertising these tests, those began with essentially studying websites and thinking about the messages aimed at women. The messages about disability and about women. And what I found when I went there was that this was just an entire commercialized world centered around DNA and products relating to DNA.

[00:59:05] So in this section, I describe arriving there and meeting my friend Katie Stoll who’s a genetic counselor who I’ve collaborated with over the years. And also talk a little bit about my late friend, Alison Piepmeier, who had visited the same conference and had some thoughts. 

[00:59:23] “In mid September of 2014, I flew to New Orleans to talk to a ballroom full of genetic counselors and industry representatives about the way NIPT is advertised to American consumers. If I were an investigative reporter, like my co-panelist Beth Daley, I could discuss the regulation of laboratory-developed tests or the stories of women whose lives were upended by inaccurate results. If I were a genetic counselor, like Katie Stoll, the chair of the panel with whom I’d spent hours discussing the tests in the weeks before, I could speak directly to the clinical realities of genetic counseling, to the industry-sponsored science behind the industry-sponsored marketing and to the statistical manipulations that make the tests seem more accurate than they are. Since I am a writer, I talked about persuasion, focusing on the web pages aimed at prospective mothers.

[01:00:13] I wanted to highlight the charged values just beneath the neutral-sounding copy to counter the common mantra simple, as in a simple blood draw, with the human complexities at stake. I hoped to do in a way what targeted persuasion does, to cut out the middleman between me and my hearer. 

[01:00:31] Genetic counselors occupy a key position in the prenatal testing process. They explain the tests and the conditions tested for to prospective parents. Because they’re also the targets of industry marketing, I want it to speak to them in a direct and unfiltered way. Genetic counselor, unlike writer, is a new job description in human history. The jobs are surprisingly similar. Both involve a delicate, complicated, active communication involving recondite information and the deepest human mysteries.

[01:01:00] Only one, though, depends on the ability to process gigabytes of data with proprietary algorithms. You would have thought that I’ve gotten to know a genetic counselor or two before Laura turned 13, but I only came to know one as a writer and friend, not a parent and long after I had any questions about what Down syndrome might mean for my family.

[01:01:20] By then, I had begun explaining Down syndrome to medical professionals instead of the other way around. Working with Katie and traveling to New Orleans was part of an effort to both teach and learn. But I had become friends with Katie in the run-up to the conference. I’d gotten to know her through another friend, Alison Piepmeier, the feminist scholar and writer and mother to Maybelle who has Down syndrome.

[01:01:40] Alison and I had come up with the idea for the panel a year before, but Alison’s brain cancer had returned and she’d had to drop out because surgery and a brutal course of chemo and radiation were about to start. Beth, the reporter had agreed to step in. Alison died less than two years later. Her friendship was one of the gifts that accompany Down syndrome, the broadening of my world, because of the people I meet as a direct or indirect result of Laura. Alison’s daughter Maybelle is a few years younger than Laura and they have not yet met, but I hope they will one day. Alison was fierce in principle, ebullient in person. My superhero nickname for her was the friendly firebrand. And though she was keenly aware of the problems with the messaging around prenatal testing, she remained radically open to talking to anybody. She had attended the same conference a year before and reported on one conversation on her blog.

[01:02:32] Her use of bullet points was typical. One, all the genetic counselors are women. All the drug reps are men in suits. Two, I’m a huge advocate of abortion rights, but it was a little weird yesterday talking to an MD who performs abortions. Among other things, she said this one couple saw that TV show with a kid with mosaicism – that’s Life Goes On with Chris Burke who doesn’t have mosaic Down syndrome – and they said, our baby might be nearly normal. I said, no, that’s not realistic. I didn’t let this doctor know that I have a child with Down syndrome because I wanted to hear her real unfiltered thoughts and wow, were they troubling.

[01:03:07] For instance, she was shocked that people might adopt with a Down syndrome. Maybe it’s a psychological thing. She said they’ll never have an empty nest. Believe it or not, she actually told me that all people with Down syndrome get Alzheimer’s. First, this isn’t true. Second, it’s something I criticized in my talk on Wednesday. Do we need to be talking about Alzheimer’s when a child isn’t even born yet? So I can stop it there with Alison’s voice. 

[01:03:29] Carole: Wow. I appreciate it, I have like tears in my eyes. I want to thank you so much for spending time with me and answering some of my questions. 

[01:03:38] George: They were great questions. And thank you for the opportunity. No, this was lots of fun. 

[01:03:42] Carole: You take care. Bye bye.

[01:03:44] George: Bye-bye.

[01:03:51] Carole: George described his late friend, Alison Piepmeier, as one of the gifts that came to him as an indirect result of raising Laura. When I randomly found Allison’s book, Unexpected: Parenting, Prenatal Testing, and Down Syndrome, on a table in the College of Charleston bookstore, I too was indirectly led into the world of parenting children born with Down syndrome. On the book’s front cover, I saw a girl in pigtails laughing as she straddled a red tricycle and a tall curly haired brunette, who was also laughing. I picked up the book. And as I read the back cover, I learned that the woman was the author, Alison Piepmeier, and the girl was her daughter Maybelle, a child who had been born with Down syndrome.

[01:04:40] At that time, along with being a mom, Alison was an author, an editor, scholar of feminism and disability studies, and an associate professor of English at the College of Charleston. While writing her book, Alison was diagnosed with cancer. She asked George Estreich and Rachel Adams, friends and colleagues who each had a child with Down syndrome, to help her finish the book. 

[01:05:04] Reading Unexpected, I could feel the collaboration, the mutual respect and the open-hearted interdependent relationship between the three writers and editors. George wrote in the preface that they hope this book will be the beginning of a conversation and not an end. And Alison wrote, “I met many other mothers who were taking on the hard work of changing the narrative, of changing the narratives about Down syndrome.

[01:05:33] Almost all these women had initially encountered negative perspectives. They were familiar with the story that their child or potential child was tragic and imperfect. And they had to fill up tools of resistance, ways of recognizing disability as a form of human diversity. These mothers showed me different ways we can radically reframe human worth. Their approaches differ, but in every case, the mother’s experience of raising their children altered their perceptions of the world in unexpected, complex and enriching ways.” 

[01:06:07] You can find the transcript, the links to George’s website, and the books mentioned in this episode in the show notes. 

[01:06:16] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

Episode Summary

Laura, a young woman with Down syndrome speaks about her life and goals. She graduated from a general education program, went on to become an advocate, an athlete, an activist for the disabled community and an educator. This is the first in a series of three episodes.

Episode Notes

Video with transcript: https://youtu.be/Su9LTiwiyGQ

Laura, a young woman with Down syndrome talks about her life and goals.

 For more information about Down syndrome, see here.”

FROM THIS EPISODE:

DEC – Disability Equity Center

WINGS Transition Program

Unified Sports – Special Olympics

Oregon Health & Science University

George Estreich

BOOK:

The Shape of the Eye by George Estreich

Transcript

[00:00:00] Laura: I am friendly, caring, passionate. I’m strong and I’m powerful. I am very honest. 

[00:00:13] Carole: Laura Estreich is a 21-year-old woman living in Oregon with her parents. She’s an advocate, a community activist, the sister of Ellie, and the daughter of George and Theresa Estreich. 

[00:00:25] Welcome to Wisdom Shared, where parents and their children are the experts and where connection inspires change. I am your host, Carole Blueweiss. 

[00:00:37] In this episode of Wisdom Shared, I have as my special guest Laura Estreich, who shares with us her wide range of athletic interests, her experience with vocational programs, and her dreams for her own future. Laura was born with an extra copy of her 21st chromosome. The medical word for this is trisomy 21, which is also known as Down syndrome.

[00:01:03] It’s important to know that not all people with Down syndrome are the same and not all people with the diagnosis of Down syndrome have that extra copy of the 21st chromosome. Although most do. There are other variations, though. And just like Laura’s story is a story about one individual and just like each person listening here has their own story, so are people that have Down syndrome unique. 

[00:01:34] As a baby, Laura survived a successful heart surgery, and she went on to complete a high school degree in a general education classroom. I reached out to George first. And when he agreed to be interviewed, I asked him if he would please ask Laura, if she would be interested in also being on my podcast. And thankfully she said yes, and now we will hear from Laura. And at the end, Laura in dialogue with George, her dad. Let’s listen.

[00:02:11] What did I forget to do? 

[00:02:14] Laura: Recording? 

[00:02:16] Carole: Yeah! We were just talking for like five minutes and I forgot to record. Oy yai yai. Let’s start again. I asked you, what’s your full name, how old you are, and where you live? 

[00:02:27] Laura: I am Laura Estreich. I am 21 years old. I am from Oregon. That’s my hometown, born here, raised here, I live here. And I live with my parents. I have a sister named Ellie. 

[00:02:42] Carole: What are some things you like to do? 

[00:02:45] Laura: I like listening to music and being active, eating healthy, spending time with my friends, biking, and swimming. I love bowling. I love playing basketball. So I’ve been watching college women’s basketball. 

[00:03:05] Carole: What’s your favorite team? 

[00:03:07] Laura: My favorite team is UConn. 

[00:03:08] Carole: Me too! Anything else you want to say about your hobbies? 

[00:03:13] Laura: Yes, I am big on Pinterest. I’m a social media fan. I like reading a lot, the news on my phone every day.

[00:03:23] Carole: That’s great. 

[00:03:24] Laura: Yeah.

[00:03:25] Carole: I wish my son would read the news. What do you love about your parents? 

[00:03:30] Laura: They’re both lovely great role models to me. They are great being professors. This one is great daddy because passion, great energy, active person, and great cooking. 

[00:03:49] Carole: He sounds awesome. 

[00:03:51] Laura: I think he is. 

[00:03:52] Carole: What do you think about school? 

[00:03:55] Laura: Oh, Carole, I love being in school a lot. I’m passionate about school and study hard. So I have been great student role model. 

[00:04:06] Carole: Who do you look up to? 

[00:04:07] Laura: I’m going to say my best friend Maya. She’s my hero. My parents are professors and her dad’s a professor too. So I am in a disablity community because I grew up in hometown includes people in disablity communities, and people with Down syndrome just like me. 

[00:04:28] Carole: I see all the books in the background there. I know your dad likes books. Do you have a favorite book? 

[00:04:35] Laura: My favorite book is The Shape of the Eye. 

[00:04:37] Carole: Tell the audience why that’s your favorite book. 

[00:04:39] Laura: The Shape of the Eye I get keeping my journey, passion, my personal life. I want to be a writer like my dad. That would be awesome.

[00:04:51] Carole: What kind of book would you write? 

[00:04:52] Laura: A book about different subject. I will be writing about with people autism and different kinds of disabilities.

[00:05:03] Carole: It sounds like you want to educate people and make them more aware of what it’s like and maybe help people understand more? 

[00:05:12] Laura: Yes, exactly, yes. For me, I’m hard to understand, because I was born, I had a heart defect, so I had a hard time when I was born. I used to have speech therapy, helping me talking, speak slow and clearly.

[00:05:28] Carole: I can tell that you’re working hard on speaking slowly and clearly. It’s not so easy for you, right? 

[00:05:34] Laura: Right. Yeah, for me, it’s hard, because people don’t understand me. I’m trying to be steady in talking. 

[00:05:41] Carole: Mostly, I understand your words and I’m so happy I do, because I know you have a lot you want to say. You said that you’re in a vocational training?

[00:05:50] Laura: Yes, DEC it is my life, my passion. I want to advocate for myself, for my community, my hometown.

[00:06:01] George: Laura was talking about working at the Disability Equity Center and that’s a community organization here. It does advocacy work for people with disabilities. Laura has been an intern there. It’s a new organization, but I think that’s been a great experience. 

[00:06:17] Laura: Definitely. So I come in WINGS and learn about job site and learn about job skills. WINGS has two sites and this one is Harding.

[00:06:28] George: So WINGS is a transition program, right? 

[00:06:31] Laura: Yes. 

[00:06:32] George: So it’s like after high school. 

[00:06:34] Laura: Yeah. 

[00:06:34] George: But before whatever’s happening next, right? 

[00:06:38] Laura: Right. In WINGS, I learn about different job sites, exploring other careers and jobs. So it means doing job skills and how to get around community, like take city bus and the bus maps. 

[00:06:54] George: Taking the city bus. 

[00:06:56] Laura: City bus. 

[00:06:57] George: Yeah. Reading the bus maps, getting around the community on your own. 

[00:07:02] Carole: You talked about WINGS. Is that the program after high school that you went to? 

[00:07:07] Laura: Yes. 

[00:07:09] Carole: What is your dream? You’re 21 years old. What do you want to do now with your life? 

[00:07:14] Laura: Good question, Carole. I want to be in an apartment, because I want to move out. I think it is its time for me to get an apartment with my roommate. It’s my dream with Maya. 

[00:07:25] In Harding, I’m trying different job sites and different activities. The Harding group the activities includes news, business, eating lunch of course, and every Friday now we do swimming. Tomorrow is a swimming day. So, exercise at Harding is called PE. It means fun activities, like frisbee, football and bicycle, basketball. 

[00:07:56] Carole: I think that doing all that physical activity and all those sports is just the best thing. I also like doing a lot of the sports that you’ve mentioned. 

[00:08:04] Laura: Carole did I tell you, actually I play basketball in Unified in high school. 

[00:08:11] Carole: You were talking about unified basketball and that’s part of Special Olympics, but it’s different because you have people that have a disability and you also have players that don’t have disabilities. So it’s like a mix of people. Is that right? 

[00:08:26] Laura: Yes, that’s right, yes. Kids Spirit is a summer program for the kids. doing activities like art classes. 

[00:08:34] George: Activities, art classes, but you’ve been working over there doing like office assistant stuff. 

[00:08:40] Laura: Yes, yeah. 

[00:08:41] Carole: Tell me if I heard you right. You’re learning a lot of things about how to be in the world. All kinds of skills, right?

[00:08:47] Laura: Yeah. That’s right, yeah.. 

[00:08:49] Carole: So your dad told me that you speak to medical students at OHS, which is the science university, right? In Oregon? 

[00:08:58] George: Oregon Health Sciences University. 

[00:09:00] Laura: Doctors should know about other types. So sometimes with Down syndrome, it’s different. Some people with Down syndrome their hearts are broken. 

[00:09:12] George: Sometimes people are born and their hearts are broken and then it can get fixed, like happened to you.

[00:09:18] Laura: Yes. 

[00:09:19] Carole: Yeah, you had a big heart surgery when you were little, right? 

[00:09:22] Laura: Yes, I have a heart defect. So if someone needs their heart fixed because I didn’t know about Down syndrome and disabilities. Medical doctors understand people with Down syndrome learn about Down syndrome, genetics, and growth. 

[00:09:40] George: Down syndrome, genetics and growth. Yeah, you’re right. They need to know all of that stuff. Yeah. 

[00:09:45] Carole: Who’s your favorite doctor? 

[00:09:47] Laura: My favorite doctor is Dr. F. 

[00:09:50] George: Dr. F is Dr. Eddie Frothingham. I think he won’t mind us giving him a shout out here. 

[00:09:56] Carole: I’m curious, Laura, why do you like him so much? 

[00:09:58] Laura: Because he’s great. He’s caring for me.

[00:10:01] George: You saw him since you were very, very young.

[00:10:04] Carole: So you’ve known him 22 years. That’s a long time. 

[00:10:07] Laura: It is. 

[00:10:09] Carole: Who is Laura? 

[00:10:10] Laura: I am friendly, caring, passionate. I’m strong and I’m powerful. I am very honest. I keep track of my schedule. 

[00:10:19] Carole: Yeah. You’re very organized. 

[00:10:21] Laura: Yes. 

[00:10:21] George: That you are. Laura is all over the calendar. Actually, she knows most of Theresa’s appointments. Theresa will ask her what her meetings are today. And so, yeah, Laura is very good on that stuff.

[00:10:32] Carole: That’s great. I could see you telling your employer, yes, I will do the job and I will do it well. I wish you good luck with all that. 

[00:10:40] Laura: Thank you. 

[00:10:41] Carole: And I hope you can keep me posted, see where you end up working.

[00:10:45] Laura: Yeah, I’m so glad I’m part of the podcast. I dream of being on a podcast. I’ll be a celebrity like “oh, it’s me!” 

[00:10:53] Carole: I’ll be sure to tell your dad and I’ll make sure he tells you when it’s going to be on. And then you’ll have to tell me what you think. 

[00:11:00] Laura: Yes also, Carole, I totally forgot so on Friday, I go to WINGS they do podcast Friday so they know about my podcast, already.

[00:11:12] Carole: Oh, great. Podcast Fridays, that sounds really interesting. Did I miss anything? 

[00:11:17] George: What do you think, Laura? 

[00:11:19] Laura: Yeah, I think it went great. 

[00:11:22] Carole: Great. It’s complicated. You had school and then you had the after-school and then you have the CV and you have Harding. I really appreciate Laura that you explained it all to me because you know, there’s so many things out there that not everybody knows about, but you know about. I want to thank you for sharing and explaining it to me and to my audience.

[00:11:42] So, thanks. Thanks again. I can say that our interview is over. Now you can relax. You did a great job, Laura. Thank you. You’re a natural. 

[00:11:52] Laura: I want to point to say, thank you daddy for doing a podcast for Carole and thank you daddy for making me a part of this. 

[00:12:01] George: You’re welcome. 

[00:12:01] Carole: It’s a team effort, right guys? 

[00:12:02] Laura: Yes. 

[00:12:03] Carole: How do you feel about it? 

[00:12:06] George: I feel good. Laura? You feel good? 

[00:12:08] Laura: Yes, I am, daddy. 

[00:12:10] George: Yeah, I know. If Laura feels good, then I’m good. 

[00:12:12] Carole: You were wonderful guests. Thank you both so much. 

[00:12:14] George: Thanks, Carole. We’ll talk to you soon. Bye. 

[00:12:19] Laura: Bye.

[00:12:24] Carole: Laura mentioned that her favorite book is The Shape of the Eye, the memoir written by her father, which tells the story of Laura when she was young. And it won the 2012 Oregon Book Award in creative nonfiction. Links to that book and other places and organizations that Laura mentioned can be found in the show notes.

[00:12:47] Join me in two weeks for chapter two of this series, where you will hear George discuss his memoir, The Shape of the Eye, which is a fascinating look into the unexpected and unfamiliar world he found himself in when Laura was born. He poetically shares his thoughts, his story, which he kept reminding me was only his story and no one else’s. Everyone, whether with a disability or not has their unique story and how important it is for us to catch ourselves when we label and think in stereotypes, instead of searching for that unique human being in front of us. 

[00:13:25] George: I knew almost nothing about Down syndrome when Laura came along. I think that it didn’t even occur to me to be like, oh, she’ll be like this. Certainly ideas about the importance of intellect, I would’ve sworn up and down, it’s intellectual achievement, what level of education you get to, college, whatever, it doesn’t matter. And I believe that. But, still to have a child where you have to reconfigure those expectations, it’s like, okay, well maybe I’m not as pure in my expectations as I thought.

[00:14:00] Carole: Chapter three or the third episode, we will hear George speak about his other book called Fables and Futures: Biotechnology, Disability, and the Stories We Tell Ourselves. It was named the Best Science Book of 2019 by NPR Science Friday, and was a finalist for the Oregon Book Award. George’s website describes how Fables and Futures shows how each new application of biotechnology is accompanied by a persuasive story, one that minimizes downsides and promises enormous benefits. You don’t want to miss these conversations with George. Trust me. 

[00:14:41] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts.

[00:14:53] If you like what you’re hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.

Episode Summary

In this episode, we meet Josh Burch, a 48-year-old man who was born with Optic Nerve Hypoplasia. Josh talks about the challenges of growing up blind and shares how he navigates a world built for sighted people with the help of technology and his guide dog, Lou. We also hear more from Josh’s stepmother, Julie Burch, and learn how they inspired and learned from each other, and how their relationship has changed over time. Some learning gems from this episode: Don’t pet a guide dog, (he or she needs to focus on guiding). Once out of harness, you can pet the dog; iPhones have an option called “VoiceOver” which anyone can use; If you meet a blind person, don’t assume they need help, ask first; Do not spoon-feed or coddle people who are blind, they are like sighted people and just need more assistance; Support groups are great like Lighthouses for the Blind; Encourage independence and build confidence; Good manners, awareness of posture and exercise matters; Tough love sometimes requires patience but it beats sympathy.

Episode Notes

RESOURCES:

PEOPLE MENTIONED:

FIND AND FOLLOW JOSH: 

FIND AND FOLLOW JULIE:

Episode Summary

Julie Burch is an accomplished author (pen name: Juliet Brilee) and stepmother to Josh, who was born blind. Now 48 years old, he lives independently with his seeing-eye dog, Lou. In this episode, Julie shares what it was like to raise a blind child. She introduces us to how she helped Josh to spatially map his environment, and talks about the how the brain’s map differs for people who have vision versus people with no vision. Julie is a mindfulness coach, and she emphasizes the importance of patience, embracing “failure,” using tough love to support independence, and enhancing the senses through mindful practice. In the next episode, Dr. Blueweiss interviews Josh, who shares his perspective on life in a world built by sighted people.

Episode Notes

FIND AND FOLLOW JULIE

Julie’s Mindfulness Art Facebook Page
https://www.facebook.com/julieburch4art

Julie’s Author Facebook page
https://www.facebook.com/Jbrileeauthor

Julie’s Author Website
https://julietbrilee.com/

Subscribe to Julie’s mailing list for information about upcoming books, nature, recipes, and life with Josh.
 

 

Episode Summary

In this episode Jillian and Audrey, mother and daughter, share their perspectives about dwarfism and offer helpful advice and wisdom along the way. They speak about topics ranging from the “sport” of dwarf-tossing to some very enlightening and evolved perspectives on disability, advocacy, decision-making, overcoming challenges, and thriving in a world that does not make it easy to live without being stared at and photographed without consent. Dwarfism is relatively rare so most of us have never met a little person. In this episode, you will gain a new appreciation for the challenges, gifts, and wisdom of one little person and her mom.

Episode Notes

Dwarf Tossing
https://en.wikipedia.org/wiki/Dwarf-tossing

Recent Dinklage/Disney Statements onSnow White and the Seven Dwarfs
https://www.npr.org/2022/01/26/1075761231/peter-dinklage-disney


RESOURCES


Books

Far from the Tree: Parents, Children and the Search for Identity by Andrew Solomon

http://andrewsolomon.com/books/far-from-the-tree/

Thinking Big: The Story of a Young Dwarf , by Susan Kuklin
https://www.amazon.com/Thinking-Big-Story-Young-Dwarf/dp/0688058264

The Missing Piece by Shel Silverstein– (animated)
https://www.youtube.com/watch?v=4gEjCJOzqXc

The Cracked Pot Children’s Story
https://alltimeshortstories.com/life-the-cracked-pot/


Associations

Little People of America
https://www.lpaonline.org
American Association of People with Disabilities
https://www.aapd.com


People

Rebecca Cokely, Ford Foundation Program Officer, U.S. Disability Rights
https://www.fordfoundation.org/about/people/rebecca-cokley/

Judy Heumann, Lifelong Advocate for the rights of disabled people
https://judithheumann.com


FOLLOW AND CONTACT JILLIAN

Podcast:https://podcasts.apple.com/us/podcast/always-looking-up/id1567615385

Instagram:
@jill_ilana@alwayslookingup.podcast

Website:
https://www.jillianilana.com

Email:
alwayslookingup227@gmail.com