[00:00:00] Bobbie: The doctors said, “you do so much for her. You’re just so awesome going around doing this.” To me, I was like, but I’m her mom. That’s what I’m going to do. Any mom would do. Just cuz I have dwarfism doesn’t change the way my brain’s thinking as a mom. 

[00:00:19] Carole: That was Bobbie Singletary. She is three feet, 11 inches and married a man who was over six feet tall. They had two daughters, Angela and Cindy. Bobbie, Angela, and Cindy were all born with achondroplasia, a type of dwarfism, as were two of Angela’s children. 

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 guests, Bobbie and Angela Singletary from Biloxi, Mississippi.

Bobbie and Angela sat down with me and we had a far-reaching conversation about many topics. For example, we don’t often hear the perspective of a sibling when it comes to what it feels like to have a sister or a brother that has medical challenges. 

[00:01:13] Angela: I think any sibling of a medically complicated child feels like they’re in their shadow. That’s just normal because there’s always more need in that bucket than there is in ours. 

[00:01:27] Carole: Bobbie, Angela and Cindy all chose careers where they could help others. Cindy worked in the school system. Angela is a bestselling author, a leader in her community and a certified life coach. Bobbie is a home trainer at apartments for people with learning disabilities.

This interview was transformative, both in words and stories they shared, but also in the energy and chemistry I witnessed between mom and daughter. A true dynamic duo.

[00:01:58] Bobbie: When I was growing up, the question I would get was have you worked in a circus? With dwarfism, it was the only job they could do was be in a circus. Now, they realize that we can do anything anybody else can do. Just give me a step ladder.

[00:02:17] Carole: The first question I always like to ask, is there a childhood memory that you have that sticks with you today? 

[00:02:25] Bobbie: Learning to ride a bike. I remember it was a huge bike, and I couldn’t sit on the seat, of course. But kids that I was playing with had gone in to eat and so I was out there with the bike. And I just kept trying and trying until I did it. Like I said, I couldn’t sit on the seat, but I could ride the bike. And it was huge. It was bigger than me. 

[00:02:46] Carole: And how did that feel? 

[00:02:47] Bobbie: Wonderful. I just felt like I’d really done something.

[00:02:55] Carole: I’m gonna take this opportunity for each of you to introduce each other. 

[00:03:01] Angela: Bobbie Singletary is my mother, and she is a social justice advocate, always has been. She taught me the core values of my social justice advocacy that I still see through the lens of today. And she is Gma to my three hooligans. And currently we reside together and we are really enjoying the relationship that we have built at this stage of our lives. 

[00:03:35] Carole: Bobbie, would you like to introduce your daughter? 

[00:03:39] Bobbie: This is my awesome daughter, Angela Renee Singletary. She’s my firstborn and words can’t explain how proud I am of her. She’s done more than I ever thought she would do as far as being a social justice person.

She’s blown the waters up. She has a beautiful laugh that she just lets go and enjoys life and I’m so glad she does cuz she has taught me to enjoy life. And I love the three grandchildren. Oh man. I love those little ones to death. She’s done a great job being a mother, too. I’m so proud of her. So proud. 

[00:04:18] Carole: Tell me about your grandchildren. How old are they? 

[00:04:21] Bobbie: Aidan is 13, DL is 11, and Maliaka is eight. And Maliaka is the youngest one and she rules the house. She’s the fashionista. We don’t go anywhere until we run it past her to see if we’re gonna look all right. 

[00:04:37] Angela: It’s true. 

[00:04:37] Bobbie: Yeah, I have come out of my room and she’s, “are you gonna wear that?” And then I went, “I guess I’m not!”, turn around and change. Then DL, he is funny. He is so funny. I love it, especially in the morning to get up with him. He’ll be sitting there on the couch and he’ll just say something off the wall and it just makes me laugh. And it’s awesome because that’s the way you wanna start your morning. You want your morning to be laughing and start your day good. And then Aidan, she’s a typical teenager. Yeah, she’s more serious. She can be funny. She reminds me a lot of me when I was a teenager. 

[00:05:19] Carole: Angela, are your children of average height? 

[00:05:22] Angela: My girls have achondroplasia, like my mom and myself. My son is average height. He’s actually tall. He’s not average height. Average height is the chosen go-to phrase, but he’s actually tall cuz their dad is 6’6″. So he’s above average height. 

[00:05:38] Carole: How tall is he? 

[00:05:39] Bobbie: He’s taller than everybody in his class.

[00:05:41] Angela: Yeah. Yeah, he’s as tall as some teachers. Taller than some teachers. 

[00:05:46] Carole: And how old is he? 

[00:05:47] Angela: 11. 

[00:05:48] Bobbie: He loves to tell us too how tall he is.

[00:05:50] Carole: It’s interesting. I asked you if your children were of average height, which now I’m realizing is not a good question. How should I ask that question? 

[00:05:57] Angela: No, it is, because, so the phrase average height is preferred to avoid using the phrase normal because, you know, what’s normal? So average is an actual thing, right? So there’s nothing wrong with that question. It just doesn’t, for this one situation, doesn’t apply. The answer is yes, he is average height because the intention is he’s not a little person. But he’s actually above average height. 

[00:06:28] Carole: Angela sent me beautiful something that Bobbie wrote about her life. 

[00:06:34] Angela: Last year, I led two anthologies, one covering stories from parents of children with dwarfism. I asked, my mom. Made her. And so she did me the honor of writing that chapter to be published in the Women with Dwarfism. And so this is where that essay resides. 

[00:06:56] Carole: Do you want to pick a part to read out loud? 

[00:06:59] Bobbie: Yeah. My parents did not treat me any different than my older brother. For example, when my brother went off to college, my dad lowered the handlebar to push the mower so that I could do the lawn. I went to a regular school class and to junior college.

My dad was an Iowa farm boy and an Air Force Master Sergeant. He didn’t take any excuses and believed there was always a way. We just had to figure out the path. And that’s who he was. And he always told me, Bobbie, you can do anything you want to. You just gotta find a way to do it. And after Hurricane Camille, I was nine when it came through, that was a long time ago. But we had to pull out nails out of the wood so that we could fix the house. We all did that. Everything. 

[00:07:45] Carole: You were brought up in the 60s, is that right? 

[00:07:47] Bobbie: Yes. 

[00:07:48] Carole: A lot has changed since then. What comes to mind in terms of how you feel that society has changed for the better or for the worse, in terms of accepting people that are different?

[00:07:58] Bobbie: I think a lot more people have accepted people with disabilities and believing that they can do what other person could do and just maybe in a different way. But there’s still a long ways to go cuz there’s still people out there that still believe that a person with a disability may not be as educated as your average person going to college.

It has come a long ways. Definitely. Cuz when I was growing up, the question I would get was, have you worked in a circus? That was pretty much the job they thought that a person with dwarfism, it was the only job they could do was be in a circus. So now, though, they realize that we can do anything anybody else can do. Just give me a step ladder. 

[00:08:42] Carole: And do you consider yourself as having a disability or being disabled? 

[00:08:48] Bobbie: It’s hard to answer that because it depends on what I’m doing. If I have to reach something, then maybe. But I do think there’s people around me that are not much taller than me I know would get a kick out of, hey, I’ll ask them to reach something and they feel good that they get to reach something for somebody. 

[00:09:07] Carole: Angela was your first-born and she had a sister? 

[00:09:11] Bobbie: Yes. 

[00:09:11] Carole: I would love to hear the story from you, how you met your husband and what your pregnancy was like. 

[00:09:16] Bobbie: We’d go swimming in the river a lot around here. I was 19 and here comes these two guys, and needless say they were about 6’3″. That’s how tall my husband was. And he came over and started talking to me and I was in the water. And he was like, let’s go over here. And I was like, “well, I’m short.” And he goes, “that’s okay. I gotcha.” And then he went to let go of me. He goes, “oh, you are short.” I said, “yes.” He got my phone number. 

At that time, I was still living with my parents. I was working and going to junior college, and he called me that night to make sure the number was right, because they didn’t have anything to write it down. So they were telling each other back and forth the phone number so he wouldn’t forget it. 

[00:10:01] Carole: No cell phones back then. 

[00:10:03] Bobbie: No. No cell phones. We just started dating. We dated for about a year and then we got married. We had a pretty big wedding and about nine months later, we had Angela. Which was awesome because I can still see my husband walking in with Angela in his arms when I had her little sister. That’s a vivid picture in my mind that I just wish I had a picture of cuz it was just the best thing.

I was laying there half dazed, but I can still remember that. And that was just, It was a beautiful, but yeah, I had no trouble with Angela. I felt good when I was pregnant with Angela and everything went great, and then her sister came along. And at first, everything seemed fine and we knew she had dwarfism.

People with dwarfism take longer to walk because the head is heavy, the legs are short, and the body is long, and so getting everything to move together. And she didn’t start walking. At two years old, we knew that something was going on, and so we started going to different doctors and nobody knew what was going on.

We don’t know why she’s not walking. And some doctors though wouldn’t even listen to me. I don’t know if they thought because my height or what? Or it just seemed like they just wouldn’t listen to me about she’s doing this and this, but not this. She can’t be doing that. Yeah, she is. I just felt like I was hitting a wall.

And this is when you didn’t have internet either. So word of mouth of people was how I learned about different doctors. I went everywhere. My husband at that time was working at Ingalls Shipyard. They were laying off, hiring, laying off, hiring, turning back and forth. And so of course at that time he was laid off and the first thing outta the doctor’s mouth was, we’re not a charity hospital and we can’t do this for free.

This was over in New Orleans, and I had my dad with me at that time, and Angela was with my mom, and I let out a string of cuss words. I had never cussed in front of my dad. I told that doctor what I thought of him. Yeah. My dad didn’t say a word. He just, okay. And we walked out and the nurse come up and she said, “I’m so sorry about that.” I said, “I’m sorry you have to work for him.” 

But thank goodness we did find one at the University Medical Center in Jackson. Awesome doctor. And he knew right away what it was. And he went in and it was a spinal cord was being pressed with the spinal column. It was pinching it and so she couldn’t get the message down to her legs to walk, but by then it was too late. Atrophy had set in. But she was able to use her arms and she was very intelligent. Just like Angela. 

[00:12:49] Carole: A wheelchair user, is that right? 

[00:12:51] Bobbie: Yes. 

[00:12:52] Carole: You were able to learn a lot, I’m sure, from her. From both your daughters, right? 

[00:12:56] Bobbie: Oh, yeah. I have. Yes. I learned a lot of, don’t take anything. Yeah. [laughs] 

[00:13:03] Angela: Stand up for yourself. 

[00:13:04] Bobbie: Yeah. 

[00:13:05] Angela: Advocacy. 

[00:13:07] Bobbie: Yeah. 

[00:13:08] Carole: It’s interesting the way you felt yourself as the mom, how you were being treated by doctors and then you had that experience to probably empathize that much more when you knew your daughters might have to experience that as well. I can’t imagine. I don’t know, would fury come into that? 

[00:13:26] Bobbie: Oh yeah. I tried to teach them that just don’t let anybody run you over. Just speak your mind. Try to start out as, I can do this. I got this. Just get outta my way. 

[00:13:39] Carole: What kinds of lessons have you learned from your daughters? 

[00:13:44] Bobbie: To speak up for myself. Now, Angela once told me that I’m very outspoken when it comes to my family, but when I come to myself, I don’t do it as much and so I’m learning more about even still now learning more about speak up for myself. No doubt. 

[00:14:07] Carole: Angela, what has inspired you that your mom has taught you? 

[00:14:13] Angela: I grew up poor. We had what we needed, but we grew up in the lower socioeconomic neighborhood and because of that we had a lot of diversity racially in our neighborhoods. Honestly, it wasn’t uncommon for us to be the minorities when the kids were outside playing, and my mom taught me the value of equality and equity before equity was even a word through lessons with my friends, seeing the injustices that some of them would face or their families would face. She had very open conversations with me about racism and how it’s our job to make sure that A, we’re not continuing that, but then also that we are standing up and advocating for others.

And so having that experience to be able to see some of those things firsthand. Because the neighborhoods we grew up in and then coupled with her teachings, this really formed a huge foundation of my belief system and the way that I consider myself a humanist and really looking at people for who they are, what their intentions are, and what their needs are.

[00:15:35] Carole: Bobbie, what drove you to be that advocate? Was it something that your parents instilled in you or is that something you developed later?

[00:15:43] Bobbie: I think that my parents did instill some in me, and I think it grew more as I had my girls and knew that we were gonna have to advocate with them. I didn’t want to be just speaking for them. I wanted them to learn as they grew and they did. They were young and they would advocate for themselves, and I would back them up. 

[00:16:07] Carole: Tell us a little bit about your philosophy and how that worked out for you in terms of letting your children be as independent as possible. As soon as they could in terms of their age.

[00:16:17] Bobbie: That was something that they would have to do things for themselves, and that included climbing up the cabinets to get the dishes down that they needed. Or we had a, what they call a kick stool. You could step on it and it would go down, it was like a library stool. And they’d get stuff out of the freezer or grab something to make something, like a big, large spoon to pull something towards you, like a jar of peanut butter or something. And Angie had chores. Her chore every evening was to wash the dishes. And she’s up on the stool doing it just like anybody else would. 

[00:16:52] Angela: This is before dishwashers were in every household. 

[00:16:57] Bobbie: Exactly. 

[00:16:58] Carole: And then how was it for you having a sister in a wheelchair but you weren’t? 

[00:17:02] Angela: It’s complicated. I think any sibling of a medically complicated child feels like they’re in their shadow. I think that’s just normal because there’s always more need in that bucket than there is in ours. But me being the older child, much like my oldest, I naturally fell into the little mommy role, whether it was asked of me or not. I didn’t mind that she had extra needs, but then there were times where I felt frustrated with it, and then there was some fear at times too when she would have to have surgeries because she would have to go to Jackson or Shreveport and I would be here or I would go. Either way, I didn’t fully know what was going on or what the result would be, and nobody wants to see their sibling in pain with IVs and all that, so it was a mixed bag. 

[00:18:01] Carole: Were you close with your sister? 

[00:18:05] Angela: Extremely. Very close.

[00:18:11] Carole: Bobbie, how do you take care of yourself? 

[00:18:13] Bobbie: I go to work. Right now, I’m a home trainer at a group home and apartments for people with intellectual disabilities. I love it very much and pretty much it’s helping people that have a learning disability. They live in either, we have some apartments and they live there, and we help them with their budgets and with their money so that they pay rent. It’s a real apartment. 

And then the group home, we do the cooking and if they need to go somewhere, we take ’em there, but they dress themselves and bathe themselves. It’s so much fun. I love it. I love it. These people are just so loving and awesome. 

[00:18:53] Carole: You wrote about your relationship with your husband when it started to go not so well, and the reason I want to bring this up is just you had a way to finally free yourself of some of the things you described that weren’t going so well.

[00:19:06] Bobbie: Yeah. The one thing that I did start doing after we got Cindy situated with the surgery on her neck and everything, and it wasn’t a happy household. He was very stern, very I’m the husband, I’m the dad, this is my house, I’m paying the bills. And I grew up in a household where you get married once and that was it. You don’t get married again. Cuz it was a religious thing. I’ve changed that thought now, but it wasn’t a happy household and I started drinking and every day. My doctors called me a functional alcoholic. I was able to do what I needed to do. During the day, I could even go to the school and help with the students, the teachers, and nobody knew that I was drinking cuz after I got sober I would talk to them about it and everyone was like flabbergasted.

They did not know that I was drinking. But I drank every day for about almost eight years, and then I realized that my girls were getting older and they were pulling away. And I understood why. I would’ve too, cuz you’ve got a mom that’s drinking all the time and not being a mom. 

And my husband had also killed himself. He took a lot of pills and alcohol and he was diabetic and we believe he didn’t take his insulin. They said it looked like he laid down and went to sleep. And he had tried before, many times, different ways. And so we thought that it was a possibility of it happening. And at that time, I had already separated. I was at my parents’ house with the girls cuz I wanted us to be safe and I had already decided I was leaving him. So I got myself into a rehab and got sober. I’ve been 23 years now sober. 

[00:20:58] Carole: Was there something that helped you that stands out? 

[00:21:01] Bobbie: Keeping my relationship with my girls. I did not want to lose my girls and I was afraid I was losing them. I did not want to lose that mother-daughter relationship cuz my daughters are my world and I could see it slipping away and could feel it. And that’s what made me go to the place and tell them I’ve got to check in. And thank goodness for my dad, he helped with the girls while I was in, cuz I was there for 21 days.

[00:21:28] Carole: So you went somewhere to a facility to help you? 

[00:21:30] Bobbie: Yeah. There was a local one, yes. That was the only way I could do it. I do a lot of praying now and I did that then too. Whenever I felt it coming on. I wasn’t gonna lose my girls.

[00:21:45] Carole: Is there anything you’d like to say to Angela while she’s sitting right next to you? 

[00:21:52] Bobbie: I love you very much. I’m very proud of you. Thank you for sticking with me. Thank you for being there whenever I needed you. 

[00:22:01] Carole: How long have you been living together?

[00:22:04] Angela: Since Cindy died in June of 2019. 

[00:22:08] Carole: That’s another big mountain of grief. How did she die? 

[00:22:13] Bobbie: They believe it was her heart. She had heart troubles. It’s a big, long story about the Mississippi Medicaid had stopped and so she and I went out to California cuz it’s easier to get Medicaid and stuff out there. And we started going to doctors, but we didn’t get out there quick enough to get all the tests run and stuff to find out that her heart was not doing well. And I had gone to work that day. I was working at a veterans village for veterans that are homeless. It was like a camp. So I had left that morning and when I came back that evening, she had passed. 

[00:22:52] Carole: I am so sorry. And it sounds like from how you told the story that perhaps that you had better access to medical care, am I understanding that correctly? 

[00:23:00] Bobbie: Yes, very much, yes. 

[00:23:02] Carole: Can you tell us a little bit about that for people out there that are in your situation and also people that aren’t, just to realize how unfair these things can be. We don’t hear these stories. 

[00:23:12] Bobbie: She was getting social security and she also had a part-time job. She was an advocate. She would help students in schools to get what they needed to learn, to make sure that the schools were giving ’em extra time or maybe giving ’em a test the way that they understood. Cuz, you know, there’s some things that the schools are supposed to do and they don’t do it unless you push ’em.

But, and so she was very good at that. She was really good at that. I was her assistant and her driver. So I was receiving social security also for helping her. And somehow had thought in their mind that we owed them a lot of money and we didn’t, cuz we were very good about making sure we didn’t go over anything we shouldn’t.

And so when the social security stopped, the Medicaid stopped. So therefore she had no medical insurance at all. We were appealing, that’s the word, for the decision. And it took so long, she was just not doing well. And we had bought a house and we couldn’t keep it. And so we made a decision just to go on out to California. And so she and I drove out there in three days. 

[00:24:24] Carole: And when you got out there, what happened? 

[00:24:27] Bobbie: We lived in a hotel for a while. I already had a job. I had gotten the job here, and so I had that ready and I started that like two days after we got there. And so we lived in a hotel for a while. And we had just gotten a little apartment about a week, maybe two weeks before she passed.

[00:24:46] Carole: And you went out there specifically to get care that you were? 

[00:24:49] Bobbie: Yes, because we knew that the Medicaid was a lot easier to get and that they had programs for people with disabilities that were a lot easier to get than in Mississippi. Mississippi is terrible about their programs. 

[00:25:03] Carole: Yeah, I’m learning that in interviewing people in different states, how many people change their lives in order to get the care that certain states have that they don’t have in their state. And it’s mind boggling. Even major cities that aren’t as good as some smaller cities. So your intention, it sounds like, was to actually move to California because you could get all this care there.

[00:25:24] Bobbie: Yeah. That was why we moved, was to get her medical insurance and we knew that we could get her better and easier access to doctors. 

[00:25:34] Angela: Better doctors. 

[00:25:35] Bobbie: Better doctors. 

[00:25:35] Carole: Better doctors. So did you have a time when she was being seen by the doctors there and it was just? 

[00:25:40] Bobbie: Oh yeah. There, yes. We had started that. We had already gotten the Medicaid. We were getting on our feet. We were still struggling, but we were getting on our feet and she had Medicaid. We had seen doctors, we had started running tests, but we just didn’t get there quick enough to do enough tests in time. 

[00:26:01] Carole: How old was Cindy? 

[00:26:03] Bobbie: 33, 34? 

[00:26:05] Angela: 33, yeah. 

[00:26:06] Bobbie: 33. 

[00:26:07] Carole: 33. And just to rewind a little bit, you are saying that you both had jobs, but am I right in understanding that in order to receive social security, you couldn’t make too much money because then you wouldn’t receive. Now, I imagine these jobs that you have aren’t paying you a lot. 

[00:26:26] Bobbie: We were in Mississippi.

[00:26:27] Angela: She didn’t have a job. 

[00:26:28] Bobbie: I didn’t have a job. 

[00:26:29] Angela: Her job was taking care of Cindy. 

[00:26:30] Bobbie: Yeah, I was Cindy’s- 

[00:26:31] Angela: And Cindy had a part-time job. 

[00:26:32] Bobbie: Right. And she was working part-time for a nonprofit. 

[00:26:36] Carole: For a nonprofit. 

[00:26:37] Bobbie: Yeah. And in Mississippi, you don’t make much money on nonprofits. 

[00:26:42] Carole: I’m trying to understand this. So Social Security Agency, why were they saying that you owed them money?

[00:26:49] Bobbie: What it was that Cindy and I had worked before for a different nonprofit and they thought that our money together had made up too much money. I know it’s hard to explain, but we had write offs. Write offs, and so we had done that. We had, like with medicine, Cindy had a service dog and of course she could write the vet off, the food off and the care for the dog and everything.

And we did that and we kept everything and they came and took 10 years worth of paperwork and I had it. They were surprised I had it, but I had it. We kept up with everything. 

[00:27:26] Carole: You were audited, it sounds like. 

[00:27:28] Bobbie: Yeah. Yeah, I was audited. Yeah. Yes, that was, yeah, that’s what it was. It was audited by Social Security, yeah. But by the time that was over, the lady had called, said everything’s good, and they sent us back our paperwork, and this was, it’s about five years down the line, they decided that we owed them $94,000. Yeah. I’m like, no.

[00:27:56] Carole: So wait, so where’s the disconnect? What in your mind happened, or? 

[00:28:00] Bobbie: Somebody’s not looking back at what the decision was, or is somebody changing their mind about the decision? I think it’s too many people making decisions is what I think it is. 

[00:28:13] Angela: I think that the state of Mississippi had some severe budget cuts and they had to figure out where that was gonna come from, and so they started dropping people from Medicaid because they’ve since had a class action lawsuit where they’ve lost, but we weren’t a part of it.

And so the struggle is that these agencies can audit you whenever, however they want to. And they passed the 10-year audit five years earlier, and then came back again and said, now we are accusing you of overpayment and you have to pay us back. 

[00:28:46] Bobbie: Yeah. 

[00:28:47] Angela: And until you prove that you didn’t overpay, we’re gonna cut you off. And so between trying to prove they’re not needing to overpay and not being able to actually get an actual explanation, because nobody answers the phone and nobody answers your emails, because they’re all understaffed, because the budget cuts are so severe, then it just makes it hard to even truly know why to this day they are still saying that she owes, $90,000.

[00:29:19] Bobbie: Yeah. 

[00:29:19] Angela: Her, herself. And it goes back and forth and she’s been fighting it since she got home. 

[00:29:25] Bobbie: Yeah. And you never talk to the same person, so that doesn’t help. You don’t get like a case worker. 

[00:29:31] Carole: Just like you two are sitting here. You two are both advocates. You two were basically doing so much for other people to help them because you empathize. And that’s just the kind of people you are. Are there lawyers out there that would help you advocate for you? 

[00:29:45] Angela: Not pro bono. 

[00:29:46] Bobbie: The ones I’ve talked to, they say there’s nothing you can do. It’s social security. They’re like 

[00:29:51] Angela: too big to fight. 

[00:29:52] Bobbie: Yeah. 

[00:29:54] Carole: Do you see yourselves as being very resilient human beings?

[00:29:59] Angela: I think that’s an understatement. We’re like cockroaches. 

[00:30:04] Carole: I mean, it’s just, can’t make that up.

[00:30:06] Bobbie: No. 

[00:30:07] Angela and Bobbie: You wouldn’t want to!

[00:30:11] Carole: What advice would you have to people out there that have had losses and have had challenges, what has helped you the most? 

[00:30:18] Bobbie: When Cindy passed away, Angie came out to California and got me because family is my support, there’s no doubt. And I didn’t have anybody out there. I had a few friends I made at work, but Mississippi has always been my support system cuz I have old friends here.

And so I definitely say stay with your support system and try to let ’em know that you need ’em. I like to go and shut myself up in my room and just stay in there, but Angela’s been really good about pulling me out and having me do things, which has helped cuz that’s made me a happier person. There’s no doubt. 

So get out there and do things and it’s gonna hurt. Stuff’s gonna come up and you’re gonna remember, but just try to remember the good times too, cuz there were a lot of those. 

[00:31:11] Angela: Yeah, I would say similarly, as a life coach, it’s important to feel your feelings. Trying to stuff ’em down doesn’t do you any good, and trying to hide from them, whether it be grief or just struggles, is gonna just fail in the end.

Lean on your support system and whether that’s the family that you were given or the family that you’ve chosen. And if you don’t have either, then it’s never too late to create one. It does take stepping out on a limb and creating that friendship, or if you already have that friendship saying, hey, I could really use some support. And that can be tough because you don’t want someone to say no or someone to say yes and then not be there for you. 

But continuing to find those people who can be there for you to help you through that while you are feeling your feelings is key to resilience. And then once you’ve gotten past it, you can use those things that you’ve survived as evidence that when the next thing comes around, you will survive it as well because you’ve already survived the other things.

[00:32:19] Carole: Angela, you’re a life coach. Clearly, you have a lot to draw from, which I imagine makes you an extraordinary professional in helping other people. Were you drawn to that career because of anything in particular? 

[00:32:31] Angela: When I first went back to school after I was married, I originally thought that I wanted to be a dietician because as a little person, as the sister of a medically complicated sibling, I understood the need for being healthy and how that can affect us as little people with our bone structure. And then, you know, everybody else as well. 

And then could only find a program that was a day program and I had kids and so on, so I then was considering psychology because everybody has always told me I’m a good listener. I give good advice. But then once I started school I realized I don’t really like going to school. And so getting a Master’s or PhD was out of the question. 

I was going to school off and on. My husband was going to school. I had kids, and then I was at Tulane and they opened a wellness coaching bachelor’s program and I was like, this is it. Like this marries the best of both worlds. And after I got divorced, my mom and my sister watched the kids at night for me and I was able to finish my bachelor’s and I started wellness coaching with a focus on health.

But then as I started to work with clients, I saw that health is the surface and the actual need is much deeper. And so that’s shifted into life coaching. So currently I help women ages 35 and older make themselves a priority again. Often women come to me, they’re overachievers, they’ve been giving themselves away, they’re people pleasers, and I help them map out goals that they have for themselves.

And work towards that. Start saying no, start eating healthy and exercising, because that’s a key part of it as well. I absolutely love it. And then last year I started A Little Perspective, which is a small publishing company and we have a podcast, we do books and we do public speaking as well. All focused on advocacy for marginalized communities.

[00:34:35] Carole: Can you explain a little bit your business model, coming out with these amazing books that have so much information? How did you come up with this concept of, first of all, little perspective series? 

[00:34:49] Angela: One of my mentors was a part of an anthology, which is a book of essays written by different people, and she decided to lead her own, and hers was called Finally Free. And it was stories of women and men who have overcome something big and they feel free from having overcome it. And she asked me last year to be a part of it. And I said, no, thank you. And then she came back and she was like, no, I really need you to be a part of it. And being she was an important person in my life, I said yes and realized that it was fear that was letting me say no.

And so I wrote my first chapter and the experience that I had as a part of that, I can’t even put it into words because not only does writing that set you free already, putting it out there for the world, while it does make you feel like you wanna puke, it also helps you to see that what you went through is going to inspire and motivate others, and it does.

And then that coupled with the group experience of being with others who are going through the same thing, who are having all of those same emotions. Then to see those people, myself included, go on to do big things because it’s like something became unlocked. Once you’ve done that big hurdle, then you see all these other things that I wanted to do.

Oh, I can do that. That’s when the idea of the two books came to me to do. The parents, I think, was the first idea because 80% of children with dwarfism are born to average height parents. So that means that it doesn’t run in the family. Often, no experience with it because it is such a rare condition. Not everybody knows a little person.

And because of that and because of the way that medical doctors can be inexperienced as well, there is often a traumatic beginning to this child’s life, whether it’s in utero or directly after. Once it’s found that the child has dwarfism, it’s not uncommon for the suggestion to be to terminate the pregnancy. Simply because of the dwarfism, not because of any greater complication. And I felt impassioned to tell these stories for the 80%, my goal with this book was so that if another parent were to read it who finds out that their child has dwarfism, they are to see, okay, this diagnosis isn’t the end of the world.

There may be some medical complications, but they’re not as complicated as some of these inexperienced doctors are making them out to be, they’re certainly not gonna lead to being fatal necessarily, and all these scare tactics that it feels like some of these medical professionals put on. I really wanted a resource for these parents, but then also family of these parents. Because I have had aunts and grandparents reach out to me and say, do you mind if I ask you some questions? My sister just found out that her child is gonna be a little person. I don’t wanna bother her cuz she’s going through all this, but I wanna calm my fears and then maybe I can help calm their fears. So I wanted to provide a book that could really help that whole thing.

And then also the same though with the lady’s book, because, as we’re raising our kids, like you said earlier, struggle with how much is too much sheltering, how much is enough? We don’t want our kids to suffer, but there’s gonna be suffering no matter what. But being a little person, you have an extra layer.

And so I wanted these ladies to tell stories of some situations that they overcame themselves. And survived and are now thriving so that these parents could again see that, oh, okay, yes, they’ll be better in some senses from. So that’s how the books started. And then what I’m doing now is helping others who have the same kind of ideas lead their own anthology. So I have a trans woman, we are working on a book right now together, and then I have a book focused on the disparity of healthcare for women of color that I’m leading with a visionary. The idea of A Little Perspective is that considering myself a humanist, I think that often all it takes is a little perspective to understand somebody else’s world.

And if you can understand someone, then you can empathize. And if you can empathize, then you can either not judge or you can help. And both of those things are key to me for those of us in the marginalized communities. There’s a phrase called inspiration porn, and that tends to refer to average people using person with a disability, them experiencing their either average day to day as inspiration. I’ve been told that I’m so proud of you when I’m at a grocery store because I’m at a grocery store. But then it also goes towards exaggerating someone’s disability in order to, you know, clickbait, so to speak. 

[00:40:30] Carole: What’s clickbait? 

[00:40:31] Angela: Making things much more dramatic than they actually are in order to create a very pitiful image to create viewers, readers, whatever it may be. 

[00:40:44] Carole: I see, to attract them, to listen or buy a story. You wrote about your experience with the doctor who said to you that you’re so awesome because you were taking care of your daughter, Cindy. 

[00:40:57] Bobbie: Yeah, the doctors. They were like, just take her home, love on her, don’t look for anything else to help her. And he said, you do so much for her and you’re just so awesome just going around doing this.

And to me, I was like, but I’m her mom. That’s what I’m going to do, any mom would do, just cuz I have dwarfism doesn’t change the way my brain’s thinking as a mom. It just surprised me. 

[00:41:25] Carole: Yeah. Angela, tell us a little bit about your podcast. 

[00:41:29] Angela: The podcast started a couple of years ago. October is Dwarfism Awareness Month and in the dwarfism community, it’s not uncommon for us to post facts and information to educate throughout the month on social media. I thought, well, I can interview people in the dwarfism community, like my Facebook friends, people that I know, and show the different ways that in some ways we are the same, but then in some ways we’re not. You had asked if we have a disability and I think in some senses of the word, especially with achondroplasia, because we typically tend to be able bodied, we’re not usually in a wheelchair.

It is kind of a mix of an invisible and a visible disability. It’s obviously visible cuz I’m four foot tall. But people assume that that means that there’s nothing wrong. And while I’m lucky and I don’t really have many health issues, a lot of people with achondroplasia do. But then there’s also just the things that come along with being a person who’s only four foot tall. Fountains, bathrooms, doors, day-to-day things that can be complicated. So there’s definitely a disability aspect, and I wanted to highlight that, again, in a very humanizing, non-pitiful way to show, hey, we’re just like you, but we do have these certain things and if you know about them, you can advocate for us as well.

And so for that month, I interviewed, gosh, I don’t know, 20 or so people. With different types of dwarfism. Not just achondroplasia cuz there’s 200-400 types. And found that I enjoyed it. I really liked it and continued to do throughout the year, interviewing people, just posting it on social media and decided that it was something I wanted to continue, but that I wanted to step into the disability world.

We are larger as a disabled group than we are as a dwarfism group and a lot of disabilities have a lot of the same needs, which is why the ADA came about. My thought was if we could interview different kinds of disabilities and conditions, then we can start to, again, humanize these things, start to show the world that while yes, we’re asking for accommodations, what we’re asking for isn’t that much, and it’s more than just one or two people.

It would help a lot of people. And this season, this year, I asked one of the authors in the ladies book, Samyuktha, to be my co-host, and so we’ve been doing it this season together and she also has achondroplasia. She’s an American who is from India, and it is just a platform for people with disabilities to use their own voice to speak for themselves. Really humanizing each of these different kinds of conditions. 

[00:44:37] Carole: So my last question, I’m gonna ask Bobbie first, who is your hero? 

[00:44:43] Bobbie: Gotta be Angie. Who else could it be?

[00:44:47] Angela: Good answer. 

[00:44:48] Bobbie: Yeah. Who else? Yeah, because she has come through so much and she’s still like Wonder Woman flying through it, and she’s this leader of all these people and she doesn’t realize how many people she’s a leader of. She just amazes me. 

[00:45:07] Angela: Who is my hero? My papa has always been huge. My mom’s dad was very much a father figure in my life, very much the keystone. He was the solid rock. If all else fails, papa’s there, so I would definitely lead with that. We have so many women in my personal life that have begun to mentor me over the last few years and really provided so much kindness and guidance. And then I’m a big Ruth Bader Ginsburg fan. I appreciate all that she has done and the way that she did it. 

As a mom, it’s hard to do all the things and not feel like a failure as a mom and her reminder that you aren’t going to be able to do all the things, it sticks with me because I want to be an amazing mom, right? Who doesn’t, but I also have a calling to be a leader, as mom says, if that’s what we wanna call it. 

[00:46:15] Carole: Where can people listen to your podcast? Where can they buy your books and how can they find you if they want some coaching?

[00:46:21] Angela: A Little Perspective podcast is on YouTube. It’s a visual podcast, and next season it will be on all the audios as well. The books are on amazon.com. And life coaching, I have a website, it’s either purposebyang.com or alittleperspective.org. Both go to the same website and there’s a ton of information about me, my coaching packages, the books, and all that kind of stuff on there as well. 

[00:46:51] Carole: Great. And we will put everything that you just said in the show notes so people can refer to that. I wanna thank you both for being so honest and sharing your wisdom. That’s what this is all about, and I really appreciate you both being on Wisdom Shared. 

[00:47:08] Bobbie: Thank you. 

[00:47:09] Angela: Thank you.

[00:47:15] Carole: I may choose my guests because they have kids with some type of challenge, but this podcast is not about the label. Rather, it’s to discover the reality behind stereotypes based on age, religion, stature, diagnosis, or whatever. The challenges are highlighted, but only to bring forth the idea that we all have challenges of one sort or another.

And how we manage them or deal with them is unique and worth sharing. I believe we can learn from each other so that a community of storytellers can perhaps make for less loneliness, less marginalization, and less pigeonholing. One way to do this is to ask questions. I admit, I find it fascinating to listen to how these amazing guests who I find in so many different ways, how they perceive their own realities and how they came to see the world from their perspective.

It’s like I’m discovering the nuggets of wisdom that would be buried if not for these conversations. I can now share my newfound bird’s eye perspective as these guests share their realities. Maybe you are wondering how I met Angela and Bobbie. Well, I love sharing how I met my guests because each encounter is a story in itself, and in this case, a coincidence, if you believe in such things.

Season two episodes one through three were interviews with the Curwins. Jillian, a little person and her mother Audrey, who is average height, maybe a little taller. Taller than me, at least. And when I posted their episodes on a social media group that consists of a collection of pediatric occupational and physical therapists from all over the world, run by the visionary, a New Zealander, Mindy Silva, a member of that collective, Sally Vicary, reached out to me to say she was the mother of twins, one of whom was a little person.

She explained to me how she had recently written a chapter in an anthology that included stories from 14 other parents of children with dwarfism. Angela published this book, Special Delivery from Pregnancy to Toddlerhood in her Little Perspective series. Angela had already been interviewed on many podcasts, including Always Looking Up, Jillian’s podcast.

Another coincidence. But when I spoke with Angela, I realized that I wanted to hear her mother’s perspective too. So I invited Bobbie, Angela’s mom, to join us in conversation. I would be remiss not to include here that during the interview I told Bobbie and Angela that I found them very inspiring because I did. But then I caught myself, worried that I’d crossed the line into inspiration porn. So this is how that went down. 

You are both very, if I say you’re inspiring, that’s bad, right? Because, but you’re inspiring is like, I mean, I’m talking to you shoulder and up, so ,you know, and I’m talking to you as if you’re just average height. Cuz you are right now to me. And I’m sorry to say you’re inspiring. I apologize. 

[00:50:12] Angela: No, there’s nothing wrong with being inspiring. 

[00:50:13] Bobbie: There’s nothing wrong with that. 

[00:50:15] Angela: It’s just being inspiring for the right reasons, as long as you would say the same to someone who didn’t have a disability, you know? 

[00:50:24] Carole: Yeah, absolutely. It’s how you think and how you’ve gotten through the challenges that you’ve gone through, and everyone goes through challenges and then, you know, some you’ve done well, some you haven’t done well, but you’re just able to talk about it and wanna help other people all the time. It’s very, what’s the word? Very, it’s like a, it’s like a bright light. 

[00:50:44] Angela: Thank you for your patience and all the changes and everything. 

[00:50:48] Carole: Oh, no. I’m so grateful that we got to do this. I knew it would be worth the wait. 

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 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

• Foster the Family
• Florida Department of Children and Families
• Empowered to Connect

Find and Follow Patty

• Email Patty: pbraendel@gmail.com

Find and Follow Carole and Wisdom Shared

• https://www.caroleblueweiss.com/
• Follow me and send me a message on Facebook: https://www.facebook.com/caroleblueweiss
• Follow me and send me a message on LinkedIn: https://www.linkedin.com/in/carole-blueweiss-pt-dpt-23970279/
• Follow me on Instagram: https://www.instagram.com/carole_blueweiss/

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.

[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.

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