A Mother Shares Her Journey of the Joys and Challenges of Raising a Child with Cerebral Palsy

podcast
Written By Carole Blueweiss

ABOUT ANNE PRATT

Website: http://www.indymovevolution.com

Email: anne@indymovevolution.com

LINKS FROM INTERVIEW

Treatment Modalities

Therapies

Tools & Equipment

Defining the Body

The corpus callosum is the primary commissural region of the brain consisting of white matter tracts that connect the left and right cerebral hemispheres. https://www.ncbi.nlm.nih.gov/books/NBK448209/

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The Wisdom Shared Team

  • Audio Engineering by Steve Heatherington of Good Podcasting Works

  • Co-Producer and Marketing Coordinator: Kayla Nelson

  • Production Assistant: Becki Leigh

 

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  • [00:00:00] Carole Blueweiss: When it comes to raising children with special needs, the real experts aren’t the paid professionals but the parents who are living it day to day. Welcome to Wisdom Shared. I am your host, Carole Blueweiss. You will hear from parents from all over the world who have extraordinary children. They have lots to share with both traditional and non-traditional advice and experience.

    [00:00:28] Anne Pratt: How the public perceives disability will absolutely not change unless we parents fight for them. Most people are just ignorant of disability. To be perfectly honest, before I had Charlie, I knew that cerebral palsy was a thing. But I had no idea what it really was or what a person with CP actually looked like.

    [00:00:51] Getting that information out there via a podcast or giving a presentation or going to the doctors and saying, hey, here’s this great method, this ABM Method. Why don’t you guys think about prescribing this as a therapy after a child is born with special needs?

    [00:01:09] Carole Blueweiss: I met Anne Pratt at an Anat Baniel Method training course, and I realized quickly that she was intelligent, compassionate, and direct, and she had a lot to share. I wanted to give voice to parents who have children with special needs.

    [00:01:29] I am so grateful that Anne agreed to be the first person interviewed on this podcast, Wisdom Shared. Anne attended Ball State University for Aquatic Biology and Fisheries Management, and she also obtained a master’s degree in Stream Ecology. She now works primarily as an ABM practitioner, which she will explain in her interview.

    [00:01:54] She still works in an environmental laboratory. She is an author for online science courses. She collects house plants and currently has over a hundred living plants in her house. She lives with her husband, Cole, and her two children, Jones and Charles. Hi, Anne.

    [00:02:14] Anne Pratt: Hi. How are you, Carole?

    [00:02:16] Carole Blueweiss: I’m great and it’s great to talk with you. Tell me a little bit about your two children.

    [00:02:22] Anne Pratt: My first child is Jones. He is six and a half. He’ll be seven in July. And as my youngest son Charles, who just recently turned four, was diagnosed with cerebral palsy around seven months of age. His MRI shows pretty significant global brain damage, especially to his corpus callosum.

    [00:02:43] He is what is considered on the gross motor function scale a level five, which means that he is pretty much reliant on a caregiver for pretty much every activity of life. We pick him up. He uses a wheelchair. He is tube fed primarily. He can’t communicate with words, per se. He’s working on using an eye gaze device.

    [00:03:07] But as far as his abilities physically as well, he’s, like I said, just turned four and he’s still in the process of learning how to roll. So he’s pretty behind developmentally and also has the diagnosis of epilepsy.

    [00:03:22] Carole Blueweiss: Can you describe Charlie to me? Like what is he like as a person?

    [00:03:25] Anne Pratt: Charlie is actually very happy despite having all of these challenges. Although he is considered the most severe physically, mentally his abilities are actually pretty surprising. He is extremely intelligent. He loves to be around people. He engages with people. He especially loves playing with his big brother, and they really interact very well together. Loves music. My husband is a musician. He plays guitar and all kinds of other instruments, and Charlie absolutely adores Cole playing music for him.

    [00:04:07] He’s starting to get to the age now where I believe he’s beginning to understand his limitations. He gets really frustrated very easily. So if he’s trying to move around to get something that he wants or is trying to explain to us his needs and we don’t understand them right away, or he can’t get to what he wants right away, he gets pretty upset.

    [00:04:31] I think it’s because he knows he wants to get there. He knows he wants to tell us this or he wants to tell us that, but he just can’t figure out how to get his body to do that task.

    [00:04:43] Carole Blueweiss: So it’s a combination of communicating in words that he can’t really express and in his body to somehow make the connections of how to physically move the way he wants to move, to get to what he wants to do.

    [00:04:56] Anne Pratt: Yes.

    [00:05:00] Carole Blueweiss: If he’s nonverbal and he really can’t control all of his movements, how do you know that he is getting along well with his brother or that he gets frustrated?

    [00:05:11] Anne Pratt: Although he’s nonverbal, he does make noises. So noises of excitement, noises of frustration, noises of anger, and just like how when a mother has a newborn, she knows the different cries that they make, right? So it’s kind of the same thing. You know, he makes certain noises for different feelings that he’s having. So for instance, when he’s playing with his brother, he’s laughing. He just has these bouts of excitement and he is smiling and he’s really engaged with him When he is frustrated, like for instance, when I was saying if he can’t get to something or if I don’t understand exactly what he’s wanting, his facial expressions show me that.

    [00:05:47] And his tone in his voice also tells me that, and he kind of, it’s almost like he makes these little screams like, oh, I can’t believe you don’t understand what I’m trying to tell you. And then obviously if he’s very upset, then it goes right into the crying. So then I know something’s bothering him.

    [00:06:05] And another thing is that once your child is a little bit older, and even though they may have not received diagnosis, you know that your life is gonna be different. And the first two weeks of Charlie’s life were the hardest for me because I pretty much slept in the NICU room each day. I just don’t remember really anybody having a lot of empathy.

    [00:06:30] You know? It was like they were there for their job and that’s it. And I don’t even remember being offered any kind of social services as far as like counseling or any kind of resources. You know, like what do you do next now that you know your child may have some kind of special needs? We don’t know yet, though I just felt really lost, you know?

    [00:06:49] And it was really kind of painful to just not know what we were gonna do next. Honestly, even at that point in time, I mean, I had heard of cerebral palsy, but as far as anything really related to it, caring for somebody, nothing. I knew nothing about that. They just don’t offer a lot of resources for parents here. I don’t know. It might be different somewhere else.

    [00:07:13] Once we actually got the diagnosis, it kind of, things kind of started changing. It was like, now they knew, so now they knew where to point us in, you know, what direction as far as what kind of doctors he was gonna need, what kind of care he was gonna need, what kind of therapies, equipment, all of that kinda stuff. So although getting the diagnosis was painful, it was also kind of a breath of fresh air because we were able to be like, okay, now we know what to do.

    [00:07:43] After Charlie was born and after most special needs kids are born and they’re usually put right away into physical therapy, occupational therapy, and speech therapy. When Charlie was three, they have to be three and under for statewide intervention program, early intervention program that provides those services. And so we utilized those for a while and we saw some results with that. I’m glad that we did it. The OT that we had worked with was amazing. We still see a physical therapist once a week, and we also are doing feeding therapy, which is technically a category of speech therapy.

    [00:08:20] And we are just working on things like spoon feeding and getting him more comfortable with oral feeds. And then along with that, we’re also doing the communication therapy, which is with the eye tracking device. I think that’s gonna be completely life changing for him. I mean, he’s already shown that he can use it pretty well and so for anybody that doesn’t know, it’s just a kind of like an iPad that has different icons and a camera tracks his eyes and he can pick and choose what he wants to say using his eyes.

    [00:08:49] Carole Blueweiss: Are there any other services that you sought out?

    [00:08:52] Anne Pratt: One of the primary ones that we came across was the Anat Baniel Method, which I actually have become a practitioner myself so that I can work with Charlie on my own. That’s probably the biggest one that we’ve seen the most change with. That’s been very helpful for us. Definitely life changing, actually.

    [00:09:11] Before we knew about ABM, we were doing at least one to two therapies every day for five days a week. We had two physical therapists we were working with, an occupational therapist, a speech therapist, water therapy, and hippotherapy. I can only imagine what Charlie was feeling because I myself was completely overwhelmed and I didn’t even stop to think like what I was putting him through.

    [00:09:33] So water therapy is an interesting one. For Charlie, I didn’t really notice a huge difference. He actually didn’t really enjoy it as much as I thought he would, but I kept doing it because my friends and everybody were seeing such great results and I’m like, okay, well we’ll just keep at it. We’ll just keep pushing it.

    [00:09:52] And finally I just said, okay enough is enough. You know, he’s not enjoying this. And it took me an hour and a half to drive to the place anyway. So I was kind of happy that we discontinued that. We did hippotherapy as well, and we actually did that for quite a while, maybe about six months. The problem with the hippotherapy was that Charlie was pretty young when we attempted it.

    [00:10:15] One of his characteristics of his cerebral palsy is that he has very low tone in his core and his head. So he has very bad head control, meaning that he can’t really pick up his head on his own. So riding a horse with no head control is actually very difficult. And so the therapist would work pretty hard with him trying to get him to keep his head up.

    [00:10:35] Sometimes they’d actually just lay him down on the horse so that he wouldn’t have to work so hard. I think he was just too young and I wasn’t really seeing any benefit. Most of the time he would be screaming, and I had to come to the conclusion that some of these things just aren’t working for us.

    [00:10:54] Maybe they will later on, but right now, definitely not. And I was starting to get very overwhelmed with all the driving. It disrupted our schedule. It disrupted his sleep. It disrupted his feedings. So I kind of just had to back it off. I know as a parent with special needs children, you want to do everything and anything that you can for your child, even if that means going to therapies twice a day, five days a week, you know, you just don’t know any better.

    [00:11:21] But what it comes down to is, and that’s fine to go out and try these different things. Different things work for different people, but you will come to know quickly what works for your child and what doesn’t. Give them time to just focus on a few things versus ten different things at once because, you know, kind of put yourself in that situation.

    [00:11:41] If you had a special need and you were put through all these different therapies consistently throughout the day, five times a week, you would be exhausted. And it’s hard to learn. Specifically, very hard for the brain to learn when it’s tired and irritated.

    [00:12:00] I mean, it took a while after Charlie was diagnosed for me to feel comfortable taking him out of the house, partly because at that point in his life, he was just always uncomfortable and pretty unhappy, actually. It wasn’t until we started ABM and getting his diet right that he was content like he is now. One of his favorite things is to get ABM lessons.

    [00:12:22] Carole Blueweiss: Can you explain what is ABM?

    [00:12:24] Anne Pratt: Yes, ABM stands for the Anat Baniel Method. It’s actually referred to as ABMN now, which is the Anat Baniel Method of NeuroMovement. A practitioner utilizes and provides movement in a slow and gentle manner, which can give the child an opportunity to actually feel and perceive those particular movements and any differences than what they’ve been accustomed to feeling.

    [00:12:52] So for instance, kids have a very plastic brain. We all do, but kids more so, and usually giving children an opportunity to feel variations in movement, to feel movements being slowed down can actually give them time to understand and feel differences from what they already know. And it gives them an idea that, hey, I might be able to do something different with this. It’s actually a very powerful tool and we have had the greatest success with using ABM over any other modality that we’ve tried.

    [00:13:28] Nine essentials that Anat came up with to help not only the children, but also the parents. They are slow, using variation, movement with attention, subtlety, having enthusiasm, imagination and dreams for them, having flexible goals, which was a really hard one for me, and awareness. Those are all the different essentials that the work is based off of.

    [00:13:54] Carole Blueweiss: And which one is the one that helps you the most?

    [00:13:57] Anne Pratt: Awareness. Having awareness is absolutely key for us because there would be so many times that I would go through our daily routines and just not even think about how I was talking to, handling Charlie, and I think it really affected him negatively. Now that I have more awareness about myself and about him, I’m able to meet him more where he’s at each day.

    [00:14:27] For example, when I go to pick him up off the floor to go get him changed for the day, I don’t just simply grab and pick him straight up off the floor. I think about how I’m gonna pick him up off the floor, how I’m gonna use my body to pick him up off the floor. It’s all of those little things just added together. Just awareness is very important.

    [00:14:45] And slow. Slow is also very important for Charlie because typically kids with cerebral palsy that are spastic, if you move them quickly, it just makes them way more spastic. So doing things with Charlie is very, very slow. There’s slow, and then there’s even more slow for him.

    [00:15:02] So when I do things with him, I don’t do them quickly at all. I’m kind of the opposite of slow myself. I like to get stuff done. I like stuff to be organized, and I just really had to like slow myself down and able to meet Charlie where he was, because if you do things fast with him, he reacts completely different.

    [00:15:23] He gets more spastic. He gets upset more easily. So when we move around, for instance, like if I go to pick him up off the floor, I take my time. I listen to where he is and I do it in a manner that is comfortable for him versus just yanking him off the floor. And then also just attention. Listening and watching his cues and not necessarily what I wanted from him. That made a huge difference. I work with him with the essentials each day. It’s really taught me to incorporate things that I would’ve never thought to incorporate into his daily life.

    [00:15:59] For the most part, all of the doctors and nurses that we’ve worked with have been fantastic. At our local children’s hospital, Riley, they have a clinic designated for children with cerebral palsy called CP Clinic.

    [00:16:11] When we go, you’re usually gonna see at least three doctors. The first one is neurology. The second one is developmental pediatrician, and the third one is physiatry, which is also like a physical medicine and rehab doctor. He also has a pulmonologist that we also have a GI specialist and a functional medicine specialist.

    [00:16:34] The pulmonology and the GI and the functional medicine are all separate entities. A functional medicine doctor, which is a little bit different than a traditional doctor, what they do is they tend to focus on what are the root causes of the conditions and not just treating symptoms. So essentially they break down all the different interactions between your environment, genetics, lifestyle. They take that information and develop a personalized approach to address your condition. So that’s actually been really helpful for Charlie to understand his diet, how it influences his GI discomfort and his food sensitivities, and things that I had no idea about. So that’s also been very helpful for me and for him.

    [00:17:20] Carole Blueweiss: So it sounds like with all these people, they don’t necessarily talk to each other. You’re the conductor of Charlie’s symphony.

    [00:17:27] Anne Pratt: Yes. No, there’s really not any besides his main doctors at the hospital. Like I said, the neurologist and the physiatry, they all work together. However, the alternative therapies that we seek out individually usually do not talk to one another. So I kind of have to reiterate to each one, okay, we’ve tried this. This is what we’re doing right now. You know, taking into account so that they’re all on the same page.

    [00:17:54] Carole Blueweiss: What is the difference between, let’s say, a functional medicine doctor and a nutritionist?

    [00:17:59] Anne Pratt: Talking about a functional medicine doctor, they’re gonna look more at what’s actually causing your symptoms. And it’s not just based on nutrition. There’s other things they look at. So how well you sleep, your exercise, your moods, your anything and everything. It’s kind of compiled together through a functional medicine doctor, whereas in my experience, actually most nutritionists just wanna focus on how many calories you can get in each day to make sure that they’re gaining weight, and they’ll do that by any means necessary. Whether that’s giving them substances that are full of sugar or calories.

    [00:18:35] The functional medicine aspect has been way more helpful for me because again, they’re looking at not only the symptoms that he’s having, but why. We’ve recently found out that he’s had some pretty severe intolerances to lactose, which isn’t surprising, and a few other things that the nutritionist had actually recommended we use.

    [00:18:59] Carole Blueweiss: What is the difference between physical therapy and ABM?

    [00:19:02] Anne Pratt: The goals are pretty much similar. I mean, we want the child to move better. We want them to be able to have a better quality of life. But the actual methods is a little bit different. So in my experience with Charlie and using a physical therapist, most of the time, it has been very uncomfortable for him.

    [00:19:22] He is primarily spastic, so his arms and his legs are pretty tight. So one of the things they had us doing was to actually stretch his arms and legs out completely, which is definitely going against his system, holding it and counting, and he would just cry. He would just scream, and I don’t blame him. Now, we do work with a physical therapist now who is more in tune with how ABM works, and she is very good at knowing Charlie’s limitations and not forcing him to do things that he’s not ready for.

    [00:19:55] So a lot of the times, physical therapists just wanna get to that end goal. They don’t really think about anything else other than that. And again, this is just in my experience. There’s many physical therapists out there that have different goals. And then for ABM, the biggest primary difference is that they meet the child where they are.

    [00:20:14] Even in that specific day, if we go for a group of lessons, the practitioner may do certain things that day. And then the next day can do completely different things. You know, you go with the child, you do what you see with the child’s doing that day, and you work with him in that aspect. Versus each day we have to stretch your arm, 30 seconds on this side, 30 seconds on that side. With ABM, he’s never been upset, never cried. He just feels more safe.

    [00:20:43] Carole Blueweiss: Are there any other methods or therapies or?

    [00:20:46] Anne Pratt: So, there are, and many of them we actually haven’t tried yet. And, you know, I don’t know if we ever will, but some of the more common ones that you can come across are stem cell therapy, hyperbaric oxygen chamber therapy, MNRI therapy, which is a method based on integrating your primitive reflexes.

    [00:21:10] A lot of kids with special needs, specifically CP, autism, have issues with sensory integration, and this method actually helps to get the body to understand how to integrate those primitive reflexes. And usually those primitive reflexes are very reactive and they inhibit a lot of movement and learning in children with special needs. So that’s a new one to me I’m actually learning more about.

    [00:21:40] There are other things out there and a lot of doctors and hospitals just are not aware of those, I believe. I don’t think it’s the fact that they just, they don’t believe in them. I just, there’s just such a lack of awareness and I sometimes kind of beat myself up for all the times that I think about where Charlie would be now if only we had started some of these therapies sooner. Right now, it’s just really up to the parents, and if they’re lucky enough to know somebody or be introduced to these alternative therapies, that’s great. But most of us aren’t, and we kind of have to take all this time and energy to research them. And it really wasn’t until Charlie was about a year and a half that I was able to come across a lot of these different modalities and utilize them.

    [00:22:25] Carole Blueweiss: So, that brings us, I think, to my last question, although I could sit here for a long time and ask you a lot of questions, and maybe we’ll have to just do a part two and go more deeply into some. If you were to share four pieces of advice to parents who have just learned that they have a child with special needs.

    [00:22:41] Anne Pratt: Absolutely. Yeah. The first would be to listen to your heart, listen to your intuition. If you don’t let doctors or anybody tell you what they think is right for your child, you know what’s right for your child. So don’t fall into that pit of being told how you should manage your child’s diagnosis, because there are options and I’m very grateful that I was able to find those options.

    [00:23:06] Second would be to find a support group. Usually you can find them on Facebook, online discussion boards. I actually ended up finding one based specifically for moms with children of cerebral palsy. I found this one be particularly helpful because they have had so many experiences. Most of the women in the group are a little bit older than I am, and so their kids are a little bit older, so it’s been really helpful for me to ask questions about things like the future.

    [00:23:34] What do you do once they get to school age? How do you deal with changing them in a public place when they’re too big to be on a changing table? I mean, all these questions that just flood your mind. It’s really great to get in connection with people that have been there and been through it. So definitely finding a good support group is very key, and it’s also a great place to go to ask advice, to let off steam, to get a different perspective on things. The next one would be to do research.

    [00:24:01] It’s hard sometimes because it’s time consuming, but the world is full of options. There are so many different modalities, therapies. All kinds of things that have helped people that are just not this traditional therapies that you’ll be assigned. You know, usually the physical, occupational, speech. Even just finding a blog or something that you can read about other people that have gone through the process and what they have found that had helped their children. That was really helpful for me as well.

    [00:24:29] And the third is, I’m sorry, the fourth. The fourth is to take care of yourself.

    [00:24:35] Carole Blueweiss: And what do you do to take care of yourself?

    [00:24:36] Anne Pratt: The first thing is to find activities that you can do together. One of my biggest activities that I love to do is go running. Running has always been my way of dealing with emotional distress or just having time to think about things. So I take Charlie with me. I just push him and he loves it, so it’s something that I’m enjoying and then he’s getting outside. He’s getting to look around. It’s a blast. So if you can find things that both of you can enjoy. I like drawing. I like painting. So we all get together and lay on the floor.

    [00:25:09] I’ve got specialized markers and things that Charlie can use. You know, I have to help him move it, but he enjoys it. So that’s another thing that we do. And, you know, that’s just like family time, right? It’s just like spending time with a typical child. I also like to crochet. I have always kind of had this knack for making things. That kind of fulfills that part of my character and gives me time to just also relax and enjoy something that I like to do.

    [00:25:36] Even just taking five minutes and just walking around the block, or you know, going out and sitting out on the front porch and just taking a breather. Those are all important. That was really hard for me to do because I’m a nurturing kind of person, so I will fix everybody else’s problems first before mine.

    [00:25:54] I’ve come to realize that can’t be the way that it has to be, because if I’m not healthy, then my kids aren’t healthy. Right? So take time for yourself. Whatever your extracurricular activities may be, find time for those. It keeps your sanity. Talk with your family. Talk with your friends. Some people I know don’t have those options.

    [00:26:14] That’s where a support group could come in handy. Don’t shut yourself in for months. That’s what I did. I was too afraid to even go outside with Charlie. It just was miserable. So find those resources. Give yourself time. Give yourself patience, and give yourself love.

    [00:26:29] Carole Blueweiss: That’s great. That applies for everybody, especially at this time. What is your advice to parents on how to get information?

    [00:26:39] Anne Pratt: First of all, I want to say don’t be afraid to ask questions. I think that was my biggest problem with Charlie along his journey is I just kind of accepted things as they were. Even though in my heart I knew that I needed more information or I wanted a certain test, or I wanted this or that. I just kind of went with the flow of things and I wish I would have advocated a little bit more for what I believed was best for Charlie. Finding a good team of doctors and nurses is important. It took us a while to narrow down to the people that we use now, just because there were quite a few doctors that I just did not agree with, and I did not want them to be part of Charlie’s team. And it was clear that they didn’t wanna be part of Charlie’s team.

    [00:27:26] Carole Blueweiss: What do you wish you knew then that you know now about raising a child with special needs?

    [00:27:33] Anne Pratt: I wish I would’ve not been afraid to ask those questions, to demand testing. And if you disagree with doctors, make it known. Most of us go through life trusting our doctors, right? Because they go to school for so long, they know it all right? So we rarely question their motives or decisions. As a parent with special needs, you absolutely have to question their motives and decisions because sometimes they don’t know it all and they don’t know what’s best. You are the one that knows what’s best for your own child.

    [00:28:03] Another thing I wish I would’ve known is that cerebral palsy is not a one size fits all diagnosis. So after he was diagnosed with CP, I did a lot of research. I did a lot of reading. I did a lot of reading about other people’s experiences and I would read stories of other children, and I remember just times that I would become incredibly depressed because Charlie was still so far behind developmentally compared to these other children.

    [00:28:34] Again, he has the most severe type of CP and it kind of took me a while to learn that, that he is different and he is going to achieve things in his own time and that it won’t be the same as others, even if they do have the same diagnosis. Every child is different. And you have to just understand that. It’s really hard when you’re a parent and you want to know more and you want to understand things and you come across other people who are going through the same journey, but it’s not quite the same as yours.

    [00:29:06] And you wonder, well, what’s wrong with my son? Why isn’t he making these gains? He has the same diagnosis as this other child. Why are they so far ahead? And so you just kind of have to realize that your child is unique and that with the child with special needs, especially, changes are gonna just take time.

    [00:29:29] Carole Blueweiss: How do you see other parents who have either typical children or children with special needs? How do they interact with you and with Charlie? What has been your experience?

    [00:29:39] Anne Pratt: Well, for the most part it’s been positive. Most of the time when we come across children, if we go on walks or something like that, usually other children wanna come up and they say hi and they ask questions, which is perfect. That’s what I want for him and that’s what I want for me. But there have been definitely times where we’ve been in situations where you can just tell the parents are not comfortable. There’s a little bit of fear or ignorance on their part. Sometimes I’ve had children kind of wander up to him, like if he’s on a blanket and he’s hooked up to his feeding tube, and the kids wanna know, well, what’s that?

    [00:30:14] You know, what’s coming out of his stomach there? And the parents will come up and swoop them right away and won’t even say one word to me and walk away. And at first when this happened, I was really hurt because it made me feel like my child was some kind of a freak, and what I’ve come to realize is that’s probably not the case.

    [00:30:35] Like I said, it’s more or less if a parent is not familiar with seeing a child with special needs, it’s kind of scary and they maybe just aren’t sure how to approach it or ask questions. I’ve been a little bit more accepting of that and not letting it bother me as much.

    [00:30:54] Carole Blueweiss: Do you try to look for classes that are for children with special needs, or do you look for classes that are just music classes that you think he would enjoy? How do you make those decisions?

    [00:31:05] Anne Pratt: Most of the time, they’ve been just for the general public, so it’s not necessarily geared towards children with special needs. For instance, at our local library, they have a reading day where one of the librarians sits down, reads a book to the children, and then there’s an activity afterwards where the kids get to play and interact with one another.

    [00:31:27] That was actually one of the harder experiences for me, kind of going back to that fear that I think some of the parents there were like, oh, he’s so fragile. You know, we don’t want our kids around him because we don’t want them to hurt him, or we don’t know how to ask the right questions. So that actually was something I gave up on just because it was kind of hard for me to deal with that.

    [00:31:52] But since then, I’ve found through my support groups, we sometimes just have playdates where the kids get together and just interact with one another the way that they do. And I think that’s been more beneficial for both of us actually, because the parents understand and they know because they have a child with special needs. And so it’s more accepted.

    [00:32:16] Carole Blueweiss: You’ve decided it’s actually more comforting and easier to be in a group with other parents that have children with special needs. And for Charlie to be with those kids.

    [00:32:25] Anne Pratt: I would say for the most part, yes, but I don’t want it to be that way. I have kind of gone out of my way to make sure that Charlie is involved in activities that typical children would normally participate in. So for instance, at his school, even though it’s a school that’s developed for kids who have developmental disorders, Charlie is still by far the most developmentally delayed, the most disabled. I hate to use that word, but it’s true. So I’ve had to work with them even just to make sure that their activities that they’re doing and the things that the children normally get to participate in are tailored so that Charlie can also participate.

    [00:33:12] Carole Blueweiss: In an ideal world, you go to the library or you go to a class where there’s children that are typical and parents that have no experience with children with special needs. How would you ideally like them to approach Charlie? Or approach you?

    [00:33:28] Anne Pratt: Well, it’s kind of a hard question to answer. Ideally, I would like them to engage me, you know, ask questions and not have that fear that if they come close that they’re somehow gonna hurt Charlie or I don’t know. I don’t know what’s going through their heads. So I just, and I think some of that is just pure ignorance on the part of the parents, but also of society.

    [00:33:57] I mean, we as a society just don’t really take a lot of time in explaining or showing that there are actually millions of people out there that have some sort of special needs. And so when people are put in a situation with somebody with a special need, they don’t know how to react. It’s like shock value, and so they just, you know, they act on instinct and that usually that instinct is to back away because they’re uncomfortable. There are so many of us out there that have kids with special needs, and we’re all around you. You may not know it, but don’t be afraid to reach out to somebody.

    [00:34:39] Carole Blueweiss: Well, thanks Anne. That was all very inspiring and informative and I learned a lot.

    [00:34:44] Anne Pratt: I just want to say thank you for having me. I appreciate being able to share my story with everybody. I wish I would’ve had access to something like three years ago, right? I mean, just to hear somebody’s voice saying the things that I am going through and have been through would be so helpful. I appreciate you giving me this time to talk.

    [00:35:06] Carole Blueweiss: Thank you, Anne, for sitting with me today and sharing all your amazing insights into what it’s like for you to raise a boy like Charlie and what it’s like for Charlie to be Charlie. It’s not often that healthcare workers or other parents and friends and even other providers can really get to know the people that they are trying to help. And so I am grateful that we had this time together where you really gave us so much information and so much insight into what has worked for you and Charlie and what hasn’t worked. And I just hope there’s a lot of parents out there and healthcare workers listening, and I’m sure that they are all grateful for all the generous stories that you shared today.

    [00:35:50] Anne’s website and contact information will be posted in the show notes along with all the links to the modalities that Anne mentioned. I’m Carole Blueweiss. Thank you for listening, and please come back and join us as I interview more parents with many special stories and amazing insights into what it’s like to raise a child who is unique and extraordinary. Bye for now.

    [00:00:36] I realized early on that Claude and Maya were a great team and that they have so much to teach other families, healthcare workers, and teachers. So I invited Claude to be my guest on Wisdom Shared, and she agreed. Claude, like Maya, has many talents. In addition to being the mother of Maya and Jake, she is an abstract painter who was born and raised in Montreal to parents who immigrated from Iraq and Iran.

    [00:01:02] Art was the family religion and her Persian mother introduced her to every element of classical and modern art. Claude completed her bachelor and master’s degrees in art history, film, and literature. She then spent two decades studying and practicing Eastern philosophy and yoga. Several years ago, she transitioned from teaching yoga to painting.

    [00:01:24] Claude’s work is inspired by a desire to communicate her internal experience of life through color, movement, and form. She lives with her husband, Dan, and her two kids, Maya, who is 20, and Jake, who is 12. Music has always played an important part in Maya’s life. She will kick off this episode and conclude this podcast with her own rendition of How Far I’ll go from the Disney film Moana.

    [00:01:50] Maya Winn: [singing] I’ve been staring at the edge of the water, long as I can remember, never really knowing why. I wish I could be the perfect daughter. But I come back to the water no matter how hard I try.

    [00:02:12] Claude Winn: She loves to sing. So even when her singing lessons, her vocal lessons, if she’s not happy, it will sound flat. And if she’s happy, it’ll sound angelic.

    [00:02:21] Maya Winn: [singing] I wish I could be the perfect daughter.

    [00:02:24] Carole Blueweiss: Tell me about your kids.

    [00:02:28] Claude Winn: They are the center of our house and my life. My older daughter is Maya and she started our parenting journey 20 years ago. She is an amazing human. Right now, she’s doing her Zoom school and she’s doing it pretty independently, and I’m really proud of her for being able to do that. So much to say and where to begin? She’s all heart. There’s no part of her that doesn’t come straight from the heart because she’s not capable of hiding anything.

    [00:03:06] Anything she’s thinking or feeling,

    [00:03:08] Maya Winn: [singing] on this island seems so happy. On this island, everything is by design.

    [00:03:16] Claude Winn: comes directly out of her. She is purity incarnate. She is a sweetheart. It’s almost like a musical instrument in that she’s more comfortable sometimes making sounds than actually making words. So you can tell what’s going on with her based on the tone of her voice and the tone of the sounds that come out of her. And she is on the spectrum. Yeah. So that’s just a preview on Maya.

    [00:03:47] Carole Blueweiss: How was the relationship between Jake and Maya?

    [00:03:51] Claude Winn: Jake is eight years younger than Maya. We had to kind of wait until we were getting a little sleep in our house. And he’s grown up as the younger sibling of a very interesting older sibling, and it’s really formed him.

    [00:04:06] When he was born, it was just like this big present in our family. He’s very, very self aware. Like he knows, he’s aware of how he is appearing and what he’s doing at every moment. Really, he’s very contained to balance this older sister he has who is neither of those things. She’s pure spontaneity and he’s very thoughtful. He thinks about what he does.

    [00:04:33] And like all 12-year-old boys right now, at least many, he’s really into video games. He loves spending time in his room, chatting with his friends. The pandemic has not been a hardship for him because music and video games is all up his alley. He’s content with that. Yeah. Between the two of them, the feeling is definitely an underlying love.

    [00:05:01] Probably their age difference doesn’t help because they don’t have that much in common. A 20-year-old girl who kind of is still into cartoons and younger pursuits, and also older pursuits like going to cafes and hanging out with a girlfriend. That has very little overlap with what Jake enjoys, so they have not so much in common, and I think they also get on each other’s nerves the way that probably typical siblings would get on each other’s nerves, especially like these opposite kids. One is neat, one is messy, one is quieter, one is louder. They’re really quite different. So one is very intellectual, one is pure emotion. That’s a gulf. But they deeply care about each other. They do. I feel that.

    [00:05:58] Carole Blueweiss: Tell me a little about Maya’s development and how was she as a baby? And for parents and healthcare workers out there, what was her journey to where she is now at age 20?

    [00:06:08] Claude Winn: So when she was born, there was just no sign that there was anything different about her. Also, she was my first child, and also I didn’t have experience with babies at all. As an infant, she wasn’t into gazing, you know, in my eyes. It wasn’t until she was getting close to one that differences started to emerge. So I’d be with like a music group. We did this music class every week. As the other kids were becoming more clingy to their parents and really staying quite close, she was quite far.

    [00:06:43] So we’d be going to a park after this music class and she would just bolt. And the other kids would like go away and come back and she wouldn’t do that. And one of the moms said something to me, not in such a very nice way, and that was the first maybe clue that something was different. It was her second child, so she was, you know, very knowledgeable and she was able to tell me that she saw something there.

    [00:07:09] She was biting instead of being able to say what she needed or when she wasn’t happy. And then another, a doctor, said something to me like, well, what hurts? And I said, well, she can’t tell me. And the doctor said she should be able to tell you or point. Maybe you should have her evaluated. But that was actually came at a very weird time because simultaneously my dad was diagnosed with cancer and he lived in Montreal.

    [00:07:35] And my world became quite split between then Montreal and New Jersey, and so probably that delving deeply into what was going on with Maya was delayed by my concern for my father, and like I wasn’t just concerned, I was important to his care because, you know, that was the way our family worked was, you know, the daughters were expected and wanted to, you know, be at appointments and be in the hospital and even sleep in the hospital. And it was pretty stressful because I had to look after Maya and my father at the same time.

    [00:08:13] But she was getting more in her own world, I would say, around this time. And we were having no gestures, no eye contact. When she was one, up to two and even later, we would find her standing very close to a speaker, like while classical music was playing and go into a kind of almost a trance or walk in circles, and she was really taking the music in at such a deep level. You could just see.

    [00:08:42] And songs that, you know, don’t have words, she just really could differentiate. And later we found out that yeah, there is something with music with her that she just feels very connected with music. So that made sense. It probably made more sense to her than the environment around her, us and the things we said.

    [00:09:00] Must have intuited, you know, her love of music because we did this program called Music Together every year, and she did it until she was quite old. I bought a lot of music, special classical music that was like music or listening music for concentration. We had this whole volume of music that she memorized, so there was a lot of exposure to music. And then when she was about two years old, we did with her a method, a therapeutic method that we found in Montreal called the Tomatis Listening Program. And they would put headphones on her and put her in swings and hammocks and wrap her in blankets, and they would play distorted classical music and words and have her speak into a microphone.

    [00:09:47] The idea was that if she could hear her own voice and differentiate these different tones, that it would at minimum reduce her auditory sensitivity because she was so sensitive to sound. It was hard to take her places, even become more able to have self speech where she would hear her own thoughts. I don’t think we got to that level, to be honest, but we did get to the level where she could go to the local cafe and be around those espresso machines.

    [00:10:19] Which was a big deal to me because I was a new mom and I needed to take her out and just be in public sometimes, just not always in our house. And a lot of these, you know, cafes have those loud sounds. So suddenly we could do that after we did Tomatis. And we did that from the age of two till six, you know, once or twice a year.

    [00:10:38] Maya was born at a time when a lot of the new therapies, a lot of the awareness that has happened since she was born wasn’t all available. I would say she’s one of those forefront kids to sort of the new kind of access to lots of therapy and lots of awareness. She was at the vanguard of that. At least she wasn’t before it existed, but she was when it was just beginning.

    [00:11:07] So many of the things we were the first. Like right now she’s in a choir class at her school and the old choir teacher wouldn’t let Maya be in choir. So we had two years of her not being in choir because they were afraid that she would do something to like, make them not award-winning choir ensemble.

    [00:11:31] And then finally we had to fight for her. We did fight for her. We went to what is it called when you fight with your school? Due process. And we got in front of a judge and they said there’s no reason this girl shouldn’t be in choir. So she got into choir. And now, right now, this year, five people in her class and her class is only seven people, are in choir, and there used to be zero.

    [00:11:59] So Maya has, you know, sort of greased the wheels for some friends and she’s done that in a few different areas. And other kids before her did that. But not as much in terms of integration. That’s kind of a new thing.

    [00:12:15] Carole Blueweiss: Her tone and her pitch are quite good. Is the choir teacher surprised that these kids are quite talented?

    [00:12:23] Claude Winn: I think that the old choir teacher that didn’t want Maya in the choir, I don’t think she cared if Maya was good at singing or not. The level was set so high by that teacher, and so just so uniform that there’s no way Maya could have satisfied her desire. And the new teacher who replaced the old teacher doesn’t even, I don’t even think, asks himself that question because it’s irrelevant.

    [00:12:51] It’s like, is he giving kids a musical education? Do they wanna be there? Are they enthusiastic? Are they learning to appreciate and love music? Yeah. And that’s all that really matters.

    [00:13:06] Carole Blueweiss: Tell me about the school that she’s at. Is it a special school or is it a…is she integrated in a public school system?

    [00:13:12] Claude Winn: She is in a self-contained classroom in a program within a typical, very large high school. So I thought when she did, when she moved to the high school, there would be like increased opportunities for integration. Actually, it was the opposite because in the high school, kids are getting more serious about studies and the academics are getting harder. And even the extracurriculars are getting more intense. And there was a great effort, I think, to keep things separate. And there was no interest in keeping things integrated at all. Early on, we met with the principal of the school who did not see our point of view. We wanted him to open up a music after-school club because we couldn’t get Maya into music.

    [00:14:06] And he said there were just too many clubs and, you know, I’m sorry, like there’s this club and that club. And so it’s like she’s in a separate program within a big building and I think that what’s gonna have to happen is that, like with the music program, the old people who have this limited vision of what it means to be a student and to be a citizen in a school has to, they have to come with a different mentality and it’ll just change organically because the younger people will have a wider perspective.

    [00:14:43] I mean, I know I’m generalizing and I know that there are older people that have a more open mind and younger people that don’t. But that’s not been my experience. It’s been my experience that like the newer people that enter into the school have a wider idea of what can be done in terms of integration.

    [00:15:02] While this was all happening with choir and she couldn’t get in, we had a teacher suggest that Maya should do cheerleading. And that was so outside of my purview. I thought, I came from a very small private girl school in Montreal. We did not have a cheerleading team. I had actually never even seen a cheerleader in person, so that was like, huh, Maya a cheerleader.

    [00:15:33] But actually it was like the perfect thing for her because she loves clapping and cheering. I mean, she lights up whenever. She claps for herself, you know, when she does something well. Even though the moves were a little difficult for her to like get down quickly, it became an opportunity for some of the other cheerleaders to mentor her and coach her up. And it was great. Pompoms and cheering and Friday night games. And it brought her into the fold of the school in a way that she hadn’t been before, which was great. And that was because the coach was so young and so open to whatever. And so, like, not high stakes about her, how she looked as a coach, and just more about inclusion. Yeah.

    [00:16:24] Carole Blueweiss: What are some times you had to advocate for Maya and when did it work and when did it not work?

    [00:16:29] Claude Winn: Well, when did we not have to advocate for Maya? I mean, for real. Like I didn’t know that. So Maya was born and I was 28. Starting from the age of 30 to whatever I am now, I would say I’ve had to become this big advocate person and I hate conflict. I hate conflict. So it’s just, you know, it’s getting easier because I’m seeing it less as conflict and the resistance is less intense. But it was really intense at the beginning and, it would cause even my husband and I to have conflict because he saw so clearly what was happening and how wrong it was. And he wasn’t afraid to just say it like it was. And I was trying to like stay friends with these people and friendly and ugh, we would like, we would be sleepless and fighting about how to fight.

    [00:17:28] The first thing we fought about was when we got Maya into the school system, and I’m really glad that, as I say this, this will not be the experience of new parents. The method used was really strict ABA which was just super backward. Like later we discovered verbal behavior ABA, which is wonderful, but that is not what was being offered at the time.

    [00:17:53] It had nothing to do with what was organic or natural or even developmentally appropriate for a child. It was like some set binder with these little graphs, little check marks of did the kid point 10 times in a row and did the kid say yes 10 times in a row? As a result of that method, Maya learned to say yes when she meant no.

    [00:18:19] She said yes after every sentence for the next seven years, eight years. She would say yes for everything. And she still says yes before she says no often. So we would fight to try to get them to use more developmental approaches in school. And we discovered early on this method called Floor Time. It’s really similar to the Anat Baniel Method that you use in that it’s developmental and the goal is to stay with the person and work with where they are.

    [00:18:50] Rather than leading them to the final output of saying yes or pointing or whatever, it’s like we want the child to think for herself and move and do things to get her needs met and her ideas across. So we would fight for her, for them to put that into the school and they did put it in, but they put it in in a lackluster way.

    [00:19:12] So wasn’t, it’s a big deal to train people to use these methods, but that was our first advocacy. And then, I mean, there were many times, I probably can’t remember them all, but getting her into the art class. They didn’t think Maya could join an art class in fifth grade. And we thought, why? You know, like she can glue pieces of paper to another piece of paper. She could do this. And she ended up making beautiful artwork and being in the art show that year, and we were so proud of what she did. But it was a fight and a fight throughout. You’re fighting with the administration and the administration above that. And it was so confusing to me.

    [00:19:54] I didn’t understand the whole political system happening within the schools that I was up against. But luckily, I think my husband did to some degree, but he was a little bit more willing to be confrontational.

    [00:20:08] Carole Blueweiss: She’s 20 now. Is she still in high school?

    [00:20:11] Claude Winn: She’s in her last year of high school because she’s allowed to stay in high school until she’s 21, because she has an IEP, an individual educational plan, and that gives her education right up to 21, which is great.

    [00:20:26] Carole Blueweiss: Many have kids who are younger and wonder what’s going to happen in the future. Maya went through puberty. Can you tell me a little bit about what it was like for you and for her?

    [00:20:37] Claude Winn: Yeah, it’s definitely a thing going through puberty, like for whether you’re typically developing or not typically developing. It’s a big deal. I think for Maya there were good things about puberty. The good things were better than the bad things. Like she started to sleep more, even if it wasn’t through the night, she slept more because she was more tired and that was incredible because before that, you know, I never sort of got more than, I don’t know, four hours in a row of sleep.

    [00:21:08] And I was tired. I was really tired for a lot of years. So sleep improved. What didn’t improve was she would, she became more like intense, you know, about things. And then we went through a journey where she went on hormonal birth control pills for hormones to help her with her cramps and supposedly help her with her skin.

    [00:21:33] And it was like a disaster for us. And for her. It made her very moody, very emotional. It intensified everything for her. And I didn’t listen to myself. Like within two weeks, I wanted her off these pills, but I didn’t take her off them for probably a year. She was 13 and 14. She was complaining about cramps a lot, and I was concerned that it was too much pain and I wondered if there was anything that could be done other than giving her like a regular pain medication.

    [00:22:09] And our doctor, who we loved, suggested the birth control pill and I was concerned. But he said, oh, it’s good. And there’s a lot of benefits, and benefits outweigh the problems, and it’ll be good for everything. It’ll regulate her mood. It will clear up her skin, da, da, da. Honestly, none of that happened.

    [00:22:34] And then I was concerned and I took her to a second opinion and I went to a female doctor. I said, I don’t think this is working. She seems more moody. That doctor said, she’ll be worse if you take her off. So, we suffered through a whole year of her being just really not herself and aggressive.

    [00:22:56] And really just intense in her emotions. And finally at school, she had like a really bad day at school. I talked to the school nurse and the nurse said, is she on any medication? And I said, she’s on the birth control pill to help her with her cramps and this nurse said, please take her off that. My daughter was on the pill and it made her just, it like ruined her life.

    [00:23:26] It was terrible for her, and I felt so validated. I started crying because I knew that she should go off it. I still was like, I still was hesitant because doctors were saying, oh, she should stay on it. And I even, I went to my hairdresser and like, there’s nobody who listens better. Or is more like practical and kind than a hairdresser.

    [00:23:50] And the hairdresser is like, you should do it. You know, of course you should take her off. And of course I took her off that second. You know, we never looked back. Like, she still gets moody and upset monthly, but it’s not all the time. Like it was all the time. And it was, it’s so much better. Night and day, like her world improved.

    [00:24:13] Carole Blueweiss: What about the cramps? How do you deal with that?

    [00:24:16] Claude Winn: She takes the Advil. There’s worse things than cramps. You know, not listening to yourself is the worst thing you could do as a parent.

    [00:24:25] Carole Blueweiss: Tell me more about that.

    [00:24:27] Claude Winn: As a parent with a newly diagnosed child, and in Maya’s case in particular with her autism diagnosis, there was this emergency sense of like rush that we were told that she needs to learn before she hits a certain milestone and she needs to be cured before that window of time closes or she needs to be treated.

    [00:24:53] And maybe if we gave her, you know, a diet without gluten and casein, she would be cured. And maybe if we gave her like injections of this or that, or tried chelation. There was a lot of pseudo medicine that was being encouraged at that time. And if you were a responsible parent, at least it felt like if you were a responsible parent, you had to try all of these different approaches that I literally hadn’t even heard of at all in any way until that moment where I had, you know, this child that I was supposed to help and deal with the sort of the grieving while being confronted with too many pseudoscientific practices.

    [00:25:45] And of course any doctor like would charge you $800 to get the first evaluation before they would even do anything to help your child. So there was a lot of $800, $1,200 just for nothing. And I think at a certain point as a parent, when you’re being asked to do things that seem terrible, you need to listen to that and not do them. Because things that are gonna help your child shouldn’t make you feel terrible. This is an exaggeration because I was not suicidal, but I had this thing I would say, anything that makes me feel like killing myself, I will stop doing. And that’s a lesson I have carried forward from the beginning till now.

    [00:26:29] Like at one point, Maya’s schedule was so ridiculous. She had, I can’t even remember because I wasn’t sleeping at that time. And it was too many things. It was like speech therapy, hippotherapy, occupational therapy, like music therapy, preschool. I literally can’t, I can’t remember. Probably ABA. This is a child that like couldn’t look at you and we were putting her through all of this and putting ourselves through all of it, and it was expensive.

    [00:27:01] And we were also driving out of state just, oh yeah, the listening therapy. And so it was just like, take away everything and then one by one put back in the things that felt good and seemed to be helping. And even if things were helpful, if it’s overwhelming, then it’s not helpful. When Maya was five, we found with the help of our local Chabad a Jewish camp in Georgia that is called Ramah Darom.

    [00:27:33] It’s not an autism camp. It’s a typical camp for conservative Jewish kids. I’m not religious, so it was again, really kind of outside of my, what I would’ve found on my own. But, you know, it was meant to be. They started a program for families with a child on the autism spectrum. And they were subsidizing it.

    [00:27:58] And I just, I was like, I guess we have to do this. And we agreed to, you know, we said, okay, we’re gonna do this. And we flew to Georgia and we went to this camp and it was just all these wonderful people who really wanted us to be there. And she was really young. She was only five. The feeling of being in a place where people wanted your child and you to be was just too, it was just too much. It was too good. [campers singing]

    [00:28:35] Carole Blueweiss: What advice do you have for parents out there who are just starting this journey?

    [00:28:40] Claude Winn: Mm. First of all, my heart goes out to you because I know we all take in this information differently and some of us are super zen about it, but, you know, there is a mourning moment where you have to say, wow, everything that I didn’t even realize I wanted for this child is maybe not gonna happen.

    [00:29:02] It might, it might not. And you have to grieve that. And I think give yourself the time to feel all that and then take your time. There are experts, but they’re not you. And they don’t know your child as well as you do, and they have, some of them have motives, you know, they have to make a living. And they’re not always thinking about, well, how does this fit in with your schedule? And is this really a good idea for your child? You’re the one that knows that.

    [00:29:30] If you can find a good counselor or a good therapist, someone you trust, will make your life feel better. Like when they come into your home or you go into their office, things feel better, not more overwhelming, not more stressful. There will be those people, those therapists that maybe are giving you a good push and it might not feel always comfortable, but it shouldn’t feel overwhelming. Like we went to somebody for years that we would pay a thousand dollars a pop and we would drive four hours to get there. And every time I came, I was like, why did I do that?

    [00:30:07] I can’t even follow her recommendations. They’re too difficult. But I would do it because I thought I was being irresponsible to not do it. And she said really nice things about Maya, but she didn’t make me, make my life better or make me feel better. It just cost us more money than we had to spend, and I would recommend not doing that

    [00:30:30] Stick to the people that actually make your life feel better. I mean, probably some of you will already do that anyway, and but some people like who are insecure like me and don’t know, you know, who to trust, might try like a variety of things. Listen to yourself. If it doesn’t feel right, it’s not right.

    [00:30:49] Carole Blueweiss: What have you found for Maya? You talked a little bit about this, but if you were to sum it up, the things you’ve come up with, what really helped?

    [00:30:58] Claude Winn: The first thing that really helped was floor time, because that’s the first thing that enabled her to look at us in the eye. And same with OT at that time, and like respond from herself. You know, like actually respond, not with crying or just giggling, but actually responding. And I think the listening therapy helped because it desensitized her ears. I think that the camp was brilliant. The community feeling was wonderful, and it wasn’t perfect because, you know, it was hard for us to be anywhere at that time, but it was really nourishing overall and then continues to feed Maya.

    [00:31:40] So, I will fast forward and say, so that camp then became her first overnight camp experience, which is so good for Maya to have this sort of independent experience. And now it’s her vocational training ground. So they offer a vocational program at their camp. And so, you know, a place where you can be and where your child can be welcome and get the training they need is ideal. And we were really lucky that we found that. And verbal behavior was super helpful.

    [00:32:14] And then finding things she loved. Like someone at her, at that camp, again, the camp said, Maya should do dance. She’s really like into dancing. I don’t wait when people give me good advice and I immediately went and found a dance school. And they were like, sure, bring her. And so Maya did dance at that dance school from the age of nine until the pandemic hit.

    [00:32:39] It’s not actually easy for her to dance. She just loves it. It was wonderful for her. You know, it was wonderful to have a place where she could in an integrated way, put on costumes and dance in recitals and have an audience and something to look forward to, and to work toward a project, which was the recital.

    [00:32:58] Socially, it wasn’t as easy because these are prepubescent and pubescent girls, and they’re not always the nicest, you know, they’re not always the most inclusive. Maya, I don’t think even gets at that level if she’s being rejected. She doesn’t necessarily have big stories about what’s happening there, but, you know, I’m sure she didn’t have that big warm hug that she got at camp.

    [00:33:22] It still was overall a very valuable experience. And she was, you know, she was accepted. I just think she wasn’t like treasured, you know, those are different categories. But she’s treasured in a lot of places. She’s treasured. You’re not always treasured everywhere.

    [00:33:40] Carole Blueweiss: That’s true for everybody, right?

    [00:33:43] Claude Winn: Totally, totally.

    [00:33:44] Maya Winn: [singing] Everybody on this island seems so happy on this island.

    [00:33:49] Claude Winn: Covid has had some real blessings for me and Maya in the sense that we’ve had a lot of time together, more than we’ve had in years. I always looked to outside stimulation for Maya and maybe underrated how much I could influence Maya myself. I would say in the last 10 years, actually forgot to mention that we had au pairs for years. That’s a very big thing. I’ve outsourced a lot of the teaching and now all of a sudden it was like all on me and I was really freaked out, like, how am I gonna do this? And it ended up being quite great. I got to see what she knows because I was part of her school program. I got to see what she doesn’t know. I got to see how to teach her and I got to hit against some walls that where I was limited and how I knew how to teach her.

    [00:34:44] And just around this moment when things got really kinda, wow, I don’t know how to not be frustrated when I’m trying to teach Maya. All of a sudden, our mutual friend Susan said, you know, how would you like to work with Carole? She’s doing the Anat Baniel Method and she thinks it could be really helpful to you and Maya, and it’s similar to floor time in some ways.

    [00:35:09] And I was like, are you kidding me? Yeah! You know, you’re always like looking for somebody to coach and support you when you’re on this journey that you know genuinely is there to help. So it was like an answer to a prayer, to be honest, that I had really given my heart to working with Maya and I really did reach kind of a limitation and I couldn’t see what it was.

    [00:35:36] And that’s when you came in and you, actually we Zoomed. We Zoomed and you watched Maya and I interact. And you saw this moment happen pretty early on, I think, in the conversation where it became a moment where Maya had to make a choice and she couldn’t, and you watched me flailing and quickly like avoiding the choice and making it for her and trying to like fix the whole situation before it got stressful or there was a meltdown and you’re like, wait a minute. Slow down. It’s fine. Let’s just see what she does.

    [00:36:18] And you’ve been coaching me not only to be patient with Maya, like let her have her experience of the frustration of the choice making and to encourage Maya, like now since we’ve been working with you, we’re giving her choices right, left, and center. And I’ll add choices, whereas I would bend over backwards to avoid a choice.

    [00:36:40] Now I’m like, hmm, an opportunity to give the girl a choice. Do you want white cheese macaroni or the orange kind? And maybe you could even have a grilled cheese, and this would’ve just like, been way too much before, but we’ve been giving her the choices. And by the way, this wasn’t even a new concept for me. I’ve been told to give her choices. Where’s my phone? It’s here, honey, it’s off. Sorry about that. I guess she’s on her break from her choir class. I’ve been told to give Maya choices for years. And we’ve done it and we’ve stopped doing it. And I think I just kind of untrained myself from trying to give her choices.

    [00:37:22] Because I never really got good at giving her choices. It went from not giving her choices to like avoiding choices at all cost and making choices for her. And so this was revolutionary like, she’s still struggling. You know, this morning she struggled, but it’s more playful now and we don’t get all worked up.

    [00:37:40] She’s taking cues from me like, I’m not worried so, and I know I’m not gonna make the choice for her. And so that’s been huge because actually choices are part of your minute by minute life. We’re making choices every minute. So if you can’t make choices, you’re frozen. You know, you’re blocked. Life is really hard.

    [00:38:00] So this is huge, you know, and it’s just the beginning. And the other thing that I’m working on is just slowing it down a lot with Maya and figuring out that she learns much better when it’s slow. And even though she can be fast, because she has this ability to be fast, it doesn’t mean that she’s fast. And it’s better if I’m slow. And that’s really huge. And slow down and don’t bombard her with all my unfiltered thoughts. [sounds of play]

    [00:38:32] Carole Blueweiss: Playdates with other parents and kids. What was that like?

    [00:38:38] Claude Winn: It was definitely tough. When she was diagnosed, we lost a lot of the people that we would do playdates with. They weren’t necessarily my friends, but their kids were Maya’s age and it just fizzled out. It was very hard to maintain that. And I would say after four and like five and one of our neighbors moved and they lost contact and probably lost even desire to play with Maya anymore. It was tough. There wasn’t a lot of spontaneous play dates. I had to manufacture those because I was told to get her, you know, get her some friends. So I did and the school did help with that somewhat. Putting at least one kid that we could call to invite. And Maya was invited to some birthday parties. She did have some interactions, but there was no long-term friend that she had.

    [00:39:36] I mean, when I look at people I know, I mean, this does make me a little sad. Like my sister or other people, they have family friends they hang out with or they go on vacation with. We don’t really have that. I am very lucky that when I moved to New Jersey, I met my spiritual mentor teacher. I don’t even have a word for her.

    [00:39:58] She’s so pervasive in my life, like spiritual mother. And she has, you know, helped to keep me toned. I’m not always in physically great shape. I usually am, but you know, it’s the inside of me is always in good shape. Like I’m always working out my inside trying to make the space bigger, to hold pain and the loss and dealing with the unknown. That’s my priority.

    [00:40:27] Carole Blueweiss: And what do you do to take care of yourself?

    [00:40:30] Claude Winn: I think I’m pretty weird. I meditate and chant almost every day. And I paint, I read poetry. I take care of my body. Maya and I do The Class. It’s Taryn Toomey’s The Class. It’s like jumping up and down and music and doing sort of yoga, but kind of aerobics and I can’t explain it, but it’s addictive.

    [00:40:58] And then we do yoga with our friend Abba every other day on Zoom. And painting. Just discovering that, how much I love to paint has been real food for me. Keeping those relationships going, those friendships that feed you, that’s what I do. Trust yourself, feed yourself, take care of yourself. That’s the center of the spoke of the wheel, where the spokes come out. There’s so many other people that have to be taken care of, but you can’t do it if you don’t take care of yourself.

    [00:41:32] Carole Blueweiss: Thank you Claude, so much for taking the time to be with us and sharing all your amazing insights and valuable advice.

    [00:41:40] Claude Winn: Thank you, Carole, for being a big part of my pandemic learning project and helping me so much with Maya. I really am grateful.

    [00:41:49] Maya Winn: [singing] Every turn I take, every trail I track, every path I make, every road leads back to the place I know or I cannot go where I long to be. See the line where the sky meets to sea, it calls me and no one knows knows how far it goes. If the wind in my sail on the sea stays behind me, one day I’ll know. If I go, there’s just no telling how far I’ll go. I know everybody on this island seems so happy on this island. Everything is by design. I know everybody on this island has a role on this island, so maybe I can roll with mine. I can lead with pride, I can make us strong, I’ll be satisfied if I play all along, but the voice inside sings a different song. What is wrong with me? See the light as it shines on the sea. It’s blinding. But no one knows how deep it goes, and it seems like it’s calling out to me, so come find me and let me know what’s beyond that line? Will I cross that line? The line where the sky meets the sea. It calls me and no one knows how far it goes, and it seems like it’s calling out to me, so come find me. One day I’ll know how far I’ll go.

    [00:00:22] Mia Yale: One hand!

    [00:00:26] Carole Blueweiss: Try it. It’s not so easy. That was Mia. At birth, 11 years ago, she experienced a stroke. I met her mother, Mara Yale, a single parent, serendipitously. After exchanging an email or two, I decided to invite her to join me on Wisdom Shared, and she said yes. I wanted parents, teachers, and healthcare workers to listen and hear her story, her journey with her daughters, a journey filled with inspiration, hope, and love.

    [00:01:02] Many considerations come up in this podcast and they apply to all children across the board, regardless of age, diagnosis, severity of injury, or their track in development. I ask Mara about her approach to parenting, why she chose the specific conventional and unconventional therapies for Mia.

    [00:01:24] We learned how Mara advocated to get the best care for Mia and how she came to her decisions. There’s so many choices out there, and not just therapy, but parenting decisions as well. A little bit about Mia’s mom, Mara Yale. She has devoted her life to helping children and adults facing neurological difficulties and pain.

    [00:01:44] She herself suffered a shoulder injury while playing Division One ice hockey in college. The one thing that helped her the most was the Feldenkrais method. So she decided to get trained, and after that training finished, her younger daughter was born and was diagnosed with a middle cerebral artery stroke. With her scientific inquiry fostered by her PhD in geophysics and a career in software engineering, Mara researched what was available and effective, and she also found ways to fill in the gaps.

    [00:02:19] In addition to being a guild certified Feldenkrais practitioner, she’s trained in somatic experiencing and Hand in Hand Parenting. She lives with her daughters Zoe and Mia in the Boston area. Let’s begin with Mia’s own words, explaining why she loves to play ice hockey. And from there Mara shares her parenting wisdom with us all.

    [00:02:41] Mia Yale: What I like about hockey is that it’s like different ’cause not, well, not a lot of girls do it and like, I like to be different.

    [00:02:57] Carole Blueweiss: What was it like for you when you found out that Mia had a stroke?

    [00:03:03] Mara Yale: Mia was born at full term. She was 40 weeks, five days. She had excellent Apgar scores at birth. She was born by cesarean after a full 27-hour labor. Everything seemed fine. Then at 48 hours old, she had jerky leg movements, which I didn’t think much of. Babies have jerky leg movements. Hers happened to be in the right side. I’m a single mother, so I was alone in the hospital with her.

    [00:03:32] My toddler was at home with other family members. In the middle of the night, the hospital pediatrician came in and told me that my baby was having seizure activity. So there I was up in the middle of the night standing two days after a major surgery for the cesarean. And then they told me that they needed to transfer her to a larger hospital, to Massachusetts General Hospital. And it was during that 36 hours that I received the call that she had been diagnosed with a stroke.

    [00:04:04] Carole Blueweiss: People don’t understand that strokes can happen to children or to babies, and I think that’s important also to explain.

    [00:04:15] Mara Yale: At the time, I’d never heard of babies having strokes. It’s actually less rare than one might think. One in somewhere between 2,500 and 4,000 babies have strokes.

    [00:04:30] Carole Blueweiss: Wow. And what happened after that? Yeah, tell me a little bit about your process.

    [00:04:35] Mara Yale: Emotionally, I think I was in shock. I was still a patient at one hospital and I had a baby at another hospital and I had a 2.5-year-old at home. So I was not sure how to proceed. I was exhausted. And the next morning at 5:00 AM, I got up and they gave me a pass, like a get out of the hospital pass, to go visit my baby. So I went by taxi and she was in the NICU for another 10 days, in the neonatal intensive care unit, while they tweaked the anti-seizure medications to get to a dose that was gonna keep the seizures under control.

    [00:05:15] And for her, the seizures were a symptom of the stroke. So she has not had seizures since that time. And I actually think the seizures were a blessing because they got us the diagnosis at three days of age, of this left middle cerebral artery stroke.

    [00:05:34] Carole Blueweiss: Oh my God. So you went home. And tell me a little bit about how you processed. And practically speaking, you have a toddler at home and you bring home a newborn baby. What happened next?

    [00:05:48] Mara Yale: Eventually, I went home and she stayed in the hospital and then I was also not advised to drive at first, so I had friends and colleagues who were arranging meal trains and driving trains. So I got rides to and from the hospital each day and I would be with my baby Mia for six hours a day to reestablish breastfeeding, to have time to talk to the medical team there.

    [00:06:15] And then at home, I was parenting my toddler in the mornings and evenings, and I also had to hire a nanny on the spot for two weeks. I like to say that at the beginning, I was balancing the fear of the unknown because I never had heard of stroke. Once I heard the diagnosis and talked to the neurologist, I understood there could be near complete recovery, but there also could be deficits in motor function and in language development. Those were the primary areas that we were concerned with and I really didn’t know.

    [00:06:51] And so there’s this like cloud of uncertainty and fear. And then I also held out a lot of hope, and the hope came from my prior apprenticeship and formal training in the Feldenkrais Method, which is an approach to, I like to think of it as applied neuroplasticity.

    [00:07:10] So it’s a way of learning through movement that can help us when we have injuries or illness or stroke with a path toward recovery. And I had discovered that in my twenties for a shoulder injury and had been a two-decade long passion by the time I had Mia. So I had all of this direct experience of improving my own wellbeing, and almost from the beginning, I started to apply those concepts in parenting her.

    [00:07:39] Carole Blueweiss: That’s great. And then so how did you actually get her some work with the Feldenkrais Method? Did you yourself work with her or did you find a practitioner?

    [00:07:48] Mara Yale: There’s two kinds of work that I think of when I think of applying Feldenkrais principles to parenting her that pervaded every aspect of our lives. In addition, she had hands-on lessons initially from Sheryl Field, who works in New York and New Jersey, and later from other practitioners. But really a lot of – now that she’s 11 and my older daughter Zoe is 13 – I feel like I’m taking ownership of a lot of what I did was setting up conditions for learning in daily life, from infancy through toddlerhood and up to age 11 now.

    [00:08:30] Carole Blueweiss: So when you say there’s the two types, the actual practical hands on, and then there’s the way that you are using the principles of the Feldenkrais Method. Can you explain that a little bit more?

    [00:08:41] Mara Yale: Yeah. Hands-on lessons typically happen in an intensive series of one or two lessons a day for three to five days in a row. And maybe there’s a specific goal that’s held loosely, like the child’s not yet crawling and you wanna see if they can get somewhere in the direction of crawling. Or in the case of Mia, early on, she was extending or arching her back a lot and a lot more than she was flexing or bending forward. And so there seemed to be an imbalance in how she was using the muscles of her trunk.

    [00:09:21] And I thought if we address that with some hands-on Feldenkrais lessons that she would be able to emerge with motor skills better like rolling and eventually creeping and crawling. In terms of being at home, some of it is things I did and some things I didn’t do. So one example is I didn’t force milestones.

    [00:09:45] I gave her a huge apprenticeship with the floor, with bare legs, bare feet. She spent just a lot of time on the floor in all different positions. On her back, on her side, on her belly, when she could get herself there. I didn’t put her in sitting very much until she could get into and out of sitting. So sitting is like a transitional place.

    [00:10:10] It’s not a sessile place where a child is placed and then they can use their hands, but they don’t, they’re stuck. If they’re placed in sitting and the trunk may seem like they can hold themselves up, but if they can’t get into and out of it, then they don’t really own that position and I think they haven’t earned the right to be there in sitting. Surely for feeding and other things, she would be in sitting, but not for play time. So she had baskets of books on the floor, a really floor-based environment in the early infancy.

    [00:10:44] Carole Blueweiss: That’s really good to hear because so many parents just want their kids to rush to the next developmental milestone. Sometimes it’s not the best thing to do. So that’s interesting that you said it’s what you didn’t do more than what you did do. Going forward from there, as she developed, did she have physical therapy?

    [00:11:03] Mara Yale: Mia qualified because of her stroke for early intervention from one month of age onward until she was three years old. And through that she had developmental evaluation and she initially received physical therapy, which later transitioned to occupational therapy around one year of age because she largely met her gross motor milestones in her first year of life.

    [00:11:29] We always had excellent occupational therapists. The physical therapist around one year of age, I liked a lot, but there was one moment where we had conflict in terms of what she wanted to recommend as the course of treatment versus what I wanted to do. And Feldenkrais wasn’t able to illuminate what to do either.

    [00:11:51] So I, it was really a place where there was no expert telling me the right path, and we had to figure it out. Mia was walking by the time she was 12 months old, and as she became upright more and more, the tonus and spasticity in her right arm increased, so she was turning her right wrist inward and her hand was tightly fisted on the right side. And the recommendation from the physical therapist was to brace the hand, to essentially pull her thumb out and open up her hand.

    [00:12:31] And I knew from my Feldenkrais experience that if we pull on tight muscles, they actually get tighter against the brace. And so intuitively I didn’t wanna do that. And that led me on a whole research quest. I have a background as a scientist. I found the community of families that have children who’ve had stroke at birth or soon thereafter.

    [00:12:59] And constraint-induced movement therapy was a therapy that I didn’t know anything about. And because of my scientific background, I was not inhibited and I went and read the literature. There wasn’t very much on using constraint therapy with children, but I just decided to start experimenting. So we went on vacation and I bought an ace bandage at the drug store and wrapped up her left hand and covered it with a sock and just let her play with her right hand and eat with her right hand.

    [00:13:34] And later we got support from an outpatient occupational therapist who was trained in constraint therapy at Spalding Rehab Hospital, so we’d go for a visit every three months, and it was more like a consult. She’d give us new things to try.

    [00:13:53] From 12 months to 2-and-a-half years, it was part of our daily routine. She’d put on the brace as part of getting dressed for the day, and I’d send her to daycare in that setup, and she would eat breakfast at home with her right hand and play. I taught the daycare providers how to set up sensory rich activities that she could do with her right hand, playing in shaving cream or finger painting, those kinds of things. She’d have morning snack and then when it was time for them to go outside to play, they’d take off the brace.

    [00:14:27] Later, I really left it up to her. The brace at that time was a Benik splint that had a hard palm. So she could put it on and take it off when she wanted, and it was in her bedroom. It was like one of her toys. So sometimes she would play with constraint therapy, but it wasn’t every day at that point. And then she forgot about it for a while.

    [00:14:51] Carole Blueweiss: Yeah, that’s really interesting. Did you continue with the constraint therapy once she was able to take off that brace?

    [00:14:57] Mara Yale: At two and a half, Mia could then undo the Velcro on the constraint therapy brace, and I decided if she could undo Velcro with her right hand, that she was ready to choose when to wear the brace and when not to wear the brace. And the brace was on her unaffected arm, on her left arm, to give her more time to practice with her right arm.

    [00:15:22] Carole Blueweiss: The first thing that comes to mind is how ironic is that you had one professional say you need a brace on the affected side. And then what ended up happening is she had the therapy with the brace on the other side. And it must be confusing to parents. You were very proactive and you figured out which one resonated with you. But for many parents out there, I can see that a lot of it is luck. Like who you end up coming in contact with in terms of how you end up treating or managing rehab or therapy.

    [00:15:56] Mara Yale: When Mia was about six or seven, she rediscovered her constraint therapy brace and started wanting to do it again herself. And at that time, I was able to find a camp so she could do it socially with a group of other children, and it was run by a local therapy center.

    [00:16:15] Carole Blueweiss: If it was approved by insurance, would the setup be that therapists would still have those three weeks paid for at a more local level and the child would have this intensive constraint therapy?

    [00:16:29] Mara Yale: There’s a phase three clinical trial for constraint induced movement therapy in infants age eight months to 36 months. That’s underway now at 12 sites around the country. And the goal is to understand the efficacy of this treatment. And what’s the appropriate dosing? Three hours a day or six hours a day? And for four weeks, there’s this intensive therapy available to families that want to participate in the clinical trial.

    [00:17:00] Once there is a blinded controlled research study demonstrating the efficacy of therapies at a sufficient scale, then there’s justification for engaging with the insurance companies to say usual and customary care is subpar to something else. So obviously we need to wait till the research plays out and see what happens.

    [00:17:27] But more and more parents are asking for this kind of therapy, and right now it’s quite elitist because you can only get it if you can afford to pay for it or if you, like me, are willing to take on the task of experimenting on your own.

    [00:17:45] Carole Blueweiss: That’s fantastic to get that science, that research out there to show the validity of this kind of work. One question that I have is, did Mia ever choose, I can’t imagine that she would actually put it on just for fun when she could, but it sounds like she did sometimes?

    [00:18:01] Mara Yale: Yeah, she did because she chose the color. The first one was this ace bandage that I bought at the drug store, but then we went to an orthotist who made her one that was hot pink and then she grew older and I think around age two she chose a lime green. So she had this lime green thing in her bedroom and it was not something that a big deal out of. So when she was in private, she’d sometimes put it on and play. Almost like a challenge for herself.

    [00:18:33] Carole Blueweiss: Oh, that’s so interesting. And the children’s minds is so different. She didn’t have that judgment that she’s, it’s just play. It’s fascinating. But it took you to put that in front of her and to give her that attitude as opposed to saying, you must wear this, where she might have said no way to letting her decide that was something she wanted to do.

    [00:18:52] Mara Yale: I just made it part of getting dressed and it wasn’t associated with the therapist that she was resisting seeing. It was just part of what we did as a family getting dressed. And actually Zoe, who’s Mia’s older sister, she was four at the time, and she would ask a lot of questions about why Mia needed that splint and what the purpose was.

    [00:19:18] And so I actually used that as an opportunity to find language to talk to both of them. So I was answering Zoe’s questions. She was very verbal and had a lot of questions, and I wanted to answer her questions in ways that I was totally comfortable with Mia hearing. So play and being very neutral about oh, Mia’s putting the splint on Lefty so she can practice with writing. So it was just matter of fact and neutral and there wasn’t a lot of fuss made out of it.

    [00:19:52] And I think that really set the tone for Mia owning her own developmental experience. For me as a parent, I think it was super helpful to have had Zoe as my first child and then Mia come along because I was not just wondering what’s typical for development versus what’s related to the stroke. I had a frame of reference.

    [00:20:17] Carole Blueweiss: Yes. Fantastic. And then tell me a little bit more about their relationship.

    [00:20:21] Mara Yale: They’re siblings now, and there’s sometimes conflict and there’s sometimes cooperation. It’s up and down, and that’s been true through the years, but overall, I would say that Zoe has motivated Mia a great deal by just being two and a half years older, and so Mia would wanna keep up. And then they just played with each other, which was really remarkable, as I think it is for any parent, to see siblings emerge with their own independent relationships, generating ideas for how to play together.

    [00:20:59] Carole Blueweiss: You have some fantastic video of Mia on the Monkey Bars. A nickname for her or, I know there’s a Monkey Mia story? [sounds of play]

    [00:21:12] Mara Yale: Early on, a lot of the physical therapists and occupational therapists start with gross motor activities, and they want to encourage weight bearing through both arms. And for toddlers, there’s a fair number of ways to do that, like wheelbarrow walking or crawling through tunnels, but at a certain point, kids wanna be upright.

    [00:21:38] And then there’s also an advantage for kids who’ve had a stroke to reaching, so to doing activities on a vertical surface. Because if you raise your hand, so it’s facing the wall in front of you, for example, a thumb falls away and is in a useful position to actually grasp. Whereas if you’re in other positions, the thumb might be tucked and fisted.

    [00:22:04] So I was always on the lookout for offering Mia things to do on the wall or on an easel or reaching and swinging. So we actually, this was a serendipitous thing. We had this baby hammock that someone had given us for Zoe when she was a baby. And when Mia was a baby, Zoe discovered that she could swing from it with her two arms, the frame that was like a freestanding frame for this baby hammock.

    [00:22:34] And Zoe taught me that she could swing from it. And so that silly thing, which was just this metal tubing to support the hammock, stayed in my bedroom probably for six or seven years, and both girls learned to hold themselves up with their arms and eventually to flip over inside, and it was something that was, again, just part of daily life.

    [00:23:00] They would mess around on that before bedtime or after bath. And fewer and fewer playgrounds have monkey bars now because of liability reasons. But the playground at my girl’s preschool did have monkey bars, and the playground at our park in our neighborhood also has monkey bars. So Mia just kept working at the monkey bars, and I think it was assisted by this little thing we had in the bedroom and then she, by age four, had mastered the monkey bars, which really was remarkable for me and very supportive.

    [00:23:35] So I’m a big fan of swinging or hanging in addition to weight bearing or pushing through the arms as a way to promote growth and integration through the whole skeleton, because you have to coordinate the whole self to organize, to swing from monkey bar to monkey bar.

    [00:23:55] Carole Blueweiss: And at this point, was she getting traditional therapy?

    [00:23:58] Mara Yale: At age four, she was in the period where she was getting half an hour a week of occupational therapy at the public preschool. So Friday mornings 8-8:30 was her occupational therapy session. So a lot of what I was doing was, again, trying to integrate it into what she was getting during the day at preschool and what I could do with her in the evenings and weekends.

    [00:24:26] Carole Blueweiss: For example, the monkey bars, is that something that was extra?

    [00:24:30] Mara Yale: It was play and it was really driven by her and probably driven by her seeing her older sister master the monkey bars. So she, again, she wanted to do it. And maybe in the beginning, I’m sure in the beginning it started with, in Feldenkrais, we talk about successive approximation. So doing things as well as you can right now and then gradually getting better with each successive time that you try something. So I’m sure it started with her just wanting to reach up and hold the bars in my arms, I’d hold her.

    [00:25:05] But over the course of it, in the videos that you referenced, she learned how to fall and she learned how to trust her ability to fall from monkey bars that are six feet off the ground. So her feet weren’t six feet off the ground, her feet were two feet off the ground. But I think a lot of parents are fearful, especially when a child’s had an early brain injury about falls and how, is my kid gonna get hurt? Is their brain at risk for another injury if they fall?

    [00:25:38] And I actually think it’s super important to let kids learn how to fall. So this is another thing I didn’t do when she was a toddler, is I didn’t hold her hands when she was an early walker. I just let her fall and if the floor was too hard, I moved her to a floor that was softer or I put rugs down and she really was not afraid of falling. And so I think as a result, she’s been very confident in taking little risks. And the risks get bigger as she gets bigger.

    [00:26:13] Carole Blueweiss: That’s really interesting. I’m glad you brought that up. I have right here ready to ask you about that. I think it’s brilliant. You have a blog and in your blog you document a lot of her development and it’s just really interesting to read. And one of your blogs talks about the importance of letting her fall and you say, no able-bodied child has ever learned to walk without a lot of falls. And I think that’s really important to hear.

    [00:26:39] Mara Yale: The blog you’re referencing also is in connection to the correspondence I had with Dr. Karen Pape, who was a Canadian neonatologist, and she said that she used to study children in one way by looking at their bruises on their legs to see if they were living a natural childhood. And a natural childhood includes bumps and scrapes and bruises. And in the absence of those, she was worried. She was worried that the child was sheltered or overly protected and not experiencing those bumps and bruises that actually build resiliency.

    [00:27:20] Carole Blueweiss: Yeah. Fantastic point. Really good to hear because as a mother you, there’s a part of you that wants to protect your child, but then there’s the reality that the child really actually needs to experience failure in order to learn. Is Mia now with sports and activity, what’s going on with her right now?

    [00:27:39] Mara Yale: Mia is 11 years old and she’s a competitive athlete. She has an identity as an athlete. She plays ice hockey goalie. I think she would say that’s her favorite sport and her favorite position. She also plays soccer and she’s, she plays in soccer she plays in goal as well, but she also plays on the field. And there’s a story about Mia becoming a goalie. So I played ice hockey growing up all the way through college, and I now coach both of my daughters in ice hockey. So it was natural for me to expose them to hockey. And we started early with hockey when they were six and four years old.

    [00:28:21] So Mia was four and a half when she started skating. Actually the year before, she started skating when she was three, but in full hockey equipment when she was four and a half. And her skating initially was very affected by her hemiplegia, so she on a scooter or a bike or running, you could see no issues, no gait issues, no asymmetries in how she used her lower extremities, but when we put her on skates, which is a more challenging task, she was able to figure out how to push and stride through her left leg much more quickly than her right leg.

    [00:29:04] Each skate has an inner edge and an outer edge, much like skis. And the way that she skated, her right skate was always on its outer edge, whereas a typical skating stride, you would be pushing off the inner edge. And it wasn’t until we found a figure skating coach who looked at her skating and actually said, oh, there’s a skate shop that can help you. And we went to this one particular skate shop in Wilmington, Massachusetts, and they adjusted the angle between the skate blade and the skate boot. They put shims on the inside of the bracket between the blade and the boot, just to slightly tweak the angle and put her on the inside edge of that skate. And then instead of her skating across the ice at a 45-degree angle, she was able to skate straight. So that was the first hurdle with skating at age four or five. [hockey sounds]

    [00:30:08] And then in the early hockey, everyone plays every position, including goalie, and she just kept asking to play goalie week after week. And there were, there was equipment for the kids to try. Because her stroke affected the right side of her body, she’s very dominantly left handed. And most of the goalie equipment for these young children was for the opposite handedness.

    [00:30:38] And I think she was six at the time and now she’s 11 and she’s playing at a competitive level. She just loves it. And in terms of built-in therapy, she has to get dressed in all of this equipment several times a week. And I watch her kind of in awe. Because it’s a big deal in the community of pediatric stroke survivors for children to learn to tie their shoes.

    [00:31:05] So not only is she independently lacing and tying her skates tightly enough to skate, she is putting on the all these pads and buckles and equipment efficiently enough to get out on the ice on time with her teammates.

    [00:31:21] Carole Blueweiss: Wow, that’s hard for anybody. Adults, too.

    [00:31:25] Mara Yale: So I’m a huge fan of intrinsic motivation. So like when Mia put the splint on as part of her play for therapy, when she is playing sports, it’s something that’s really driven by her and by her love of sports, and she doesn’t think of it as therapy. She thinks of it as play and it has social benefits, and she’s enjoying being with all of her peers.

    [00:31:57] Carole Blueweiss: Fantastic. And then at some point, you met somebody who was doing research with virtual reality and Mia became a subject for that. Can you talk a little bit about that?

    [00:32:10] Mara Yale: Sure. So there’s a physical therapist who’s at Northeastern University. Her name’s Danielle Levac, and she has a ReGame lab. It’s a virtual reality lab that’s focused on rehabilitation. And so she was recruiting children to participate in this clinical trial where you get all dressed up in a virtual reality headset and you’re playing a game.

    [00:32:39] It’s like a video game, so it’s perfect for Mia, who’s a digital native. The task involved pointing at various objects that she was seeing in the field of view and seeing how she shifted her balance to do that both with her, I believe with both hands.

    [00:33:00] Carole Blueweiss: Can you tell me a little bit more about that study? Did it, do you know any of the results yet on how that’s gonna be used in the future?

    [00:33:08] Mara Yale: That study is still underway. There was a validation between the virtual reality task and then a physical setup. So what they’re trying to demonstrate is can there be training or learning in the virtual reality context that then carries over.

    [00:33:25] Male Voice: You went to the VR lab yesterday for the first time?

    [00:33:28] Mia Yale: Yes.

    [00:33:29] Male Voice: Tell me about that. Tell me about the experience. How did it, were you nervous? Was it, oh, this is really exciting ’cause of technology?

    [00:33:36] Mia Yale: I was pretty excited. Well, especially because like, that was my first time in VR goggles and like it was really cool, all that technology.

    [00:33:54] Male Voice: Yeah. Describe to me, what did you have to do?

    [00:33:57] Mia Yale: We put on the VR goggles and it was this environment where it was nature. So there were these rectangular targets and with one white dot in the middle, and I was wearing this glove on my left hand, my non-affected side. I had to move to find, ’cause if the target was red, I wasn’t close to finding it. The goal was to get the target to be green and then to sit and break through reality. By making the target go green, you had to move around and see which position made it green, and then you had to stay in that position and with the glove and virtual reality, touch the target with the pointer finger.

    [00:34:49] Male Voice: Was it tough?

    [00:34:50] Mia Yale: It was pretty tough.

    [00:34:53] Mara Yale: Yeah, that it’s a fun way to interact. The kids think they’re playing a game. It’s high tech, and then actually then there may be some carryover. And Danielle’s even experimenting with mailing virtual reality headsets to children to try. Danielle is also interested in measuring things that are not just physical development, but also tolerance for frustration and other cognitive and psychological measures about how we learn.

    [00:35:25] Carole Blueweiss: That’s great. So at a time like this, it would be just fantastic for these kids who are missing their therapies to have this opportunity to have targeted therapy at home. And that ties in a lot of how the Feldenkrais, they’re very focused on the idea of learning. So it’s nice to see the two very separate professions merge on this idea and to have the research. That’s very exciting.

    [00:35:51] Mara Yale: So just connecting back to your comment about the convergence of PT or this PT research with Feldenkrais, as well as with research that I’m conducting with the neurologist who I collaborate with at Mass General Hospital. It’s all based on modern neuroscience, right? So there’s a big focus on neuroplasticity and how we learn and how neuroplasticity is actually most fluid at the youngest ages, maybe zero to three or zero to five, and then there’s another big developmental window in the teenage years.

    [00:36:25] But we can really learn at any age. So when you talk about a convergence, I think there is a convergence, but I think it’s more that everyone’s recognizing the implications of neuroplasticity in these respective fields. Feldenkrais was way ahead of his time in recognizing that. And he didn’t use the word neuroplasticity, but he understood these principles and ways of learning.

    [00:36:49] Carole Blueweiss: Now, I know you’ve also done some other very interesting certifications, or, I don’t know if that’s the right word, you can correct me, but this the Hand in Hand, how has that played into your life and what made you be involved with that work? And what is it?

    [00:37:03] Mara Yale: In terms of non-movement based practices that I’ve added to my repertoire as a parent and now as a practitioner, there are two that I have taken on. Early on, when my kids were about four and two, it became increasingly challenging for me to figure out how to navigate parenting in ways that felt authentic to me. Like I wanted the home to be peaceful and not have my kids fighting all the time. And Zoe, my 4-year-old, was pretty intense.

    [00:37:37] She was very verbal and needed a lot of socialization and I was struggling. And I heard about special time. And then I started researching special time, and I think it’s used in various contexts, but one place where it’s used is within this framework called Hand in Hand Parenting, which is also based in neuroscience, and it’s the subtitle of Hand in Hand Parenting is Parenting Through Connection.

    [00:38:04] The premise is that if our children and we as adults and as parents feel heard and listened to, then our behavior will reflect that. And that children’s behavior is actually a direct reflection of how well regulated they are and how well understood they feel.

    [00:38:25] Carole Blueweiss: Which changes something in the brain on their learning switch, right? Like how that’s part of that neuroplasticity that’s targeting the brain as opposed to this very strict sort of from outward to inward. It’s more from inward to outward, which is just makes so much sense.

    [00:38:41] Mara Yale: So, with this child that I’m thinking of, there are stressors. He’s also a stroke survivor, so there’s stressors of being a preschooler in a preschool with children who are typically functioning. And so there’s this always trying to keep up and I think that the stuttering was a manifestation of that. So the traditional way to address a stutter is to go to speech therapy. Any kind of therapy is then getting in the child’s head as something’s wrong with my speech. And the advantage of doing it through play is he didn’t think we were working on his speech. He thought we were having fun, and it just happened to help his speech.

    [00:39:27] So another modality that I’m adding to my repertoire in the past, I’d say five years, is called somatic experiencing. And it’s really about how trauma gets stored in our system. And how it can get processed and released. And trauma can be for these children, it can be medical trauma, it can be chronic stress of going to being driven around from therapy to therapy, many each week. Or it can be parents who are very stressed about decisions about their child who has special needs.

    [00:40:06] So there are many different ways it can manifest. I actually got into the work for my own personal needs. I was experiencing a period of burnout at my software engineering job that I’d been at for nearly 20 years, and so I sought some somatic counseling or therapy for myself to work through my decision making about whether to stay or to go and how to survive staying in a way that still left my nervous system intact.

    [00:40:39] I was quickly able to see how to use some of these strategies that I was learning for myself with my own children and now with other children that I’m working with in my private practice. And so I’m nearly complete with the three year training program in somatic experiencing. I’ll complete it by the end of this year.

    [00:40:57] Somatic experiencing was pioneered by Peter Levine, and he’s a biophysiologist who understood how the thwarted fight-flight-freeze responses get stuck in our nervous system, and there’s a variety of ways of being with others that allow us to revisit those, not necessarily revisiting every trauma or every stressor in our lives, but like peeling layers of an onion to uncover what’s the true essence of each person and how they can move forward and get unstuck in their lives.

    [00:41:38] Carole Blueweiss: I understand that you started this somatic experience and with your own self after trying to figure out about your profession and your job and those feelings that ensued. How do you see this kind of work helping somebody who’s had a child that the whole traumatic experience of, that you went through and others go through learning about their child’s differences? Is that something that you think is properly recognized, that the trauma and how does that affect them as a mother going forward? Since you have that background?

    [00:42:07] Mara Yale: Yeah, for mothers and for fathers and grandparents and whatever caregivers are in the picture, I don’t think trauma’s recognized, and it’s something I’ve been trying to educate the medical teams that I’m in interfacing with. I think it’s really under-recognized and for me, the way I would experience it initially, many of Mia’s appointments, her follow-up appointments, were at the same time of year. So she was born in June, late June, so it was hot and humid. And every time I would go into Boston, so I live outside of Boston, I’d go into Boston and it’d be this hot, humid weather and I’d be trying to figure out how to navigate and how to park and manage the stroller and everything.

    [00:42:53] And there was this weather trigger and I’d be like immediately back in that time of when she was in the NICU. And so for me there was like a recognition oh, that’s maybe a little bit of PTSD from that time. And it took many years, even after she was doing the monkey bars and she was doing okay in school.

    [00:43:16] It took many years for me to name that and own it. And compared to many families that I’ve met, her medical trauma was less involved than it is for many. So I just think it’s really critical to destigmatize it, to name it, and to offer support. And one of the key ways to offer support is connection with community. I mean, it can be community of a like-minded diagnosis. Or a similar diagnosis, or it can be local community that’s broader in the range of diagnoses, but might be more resourceful for local resources in your local geographic area. And I found both of those super helpful.

    [00:44:00] Carole Blueweiss: And would you say that some of these parents don’t even realize because doctors don’t necessarily talk about it and the medical profession doesn’t recognize it, that that can carry on unrecognized, unconsciously, and affect parents and and grandparents. And had they somehow gotten access to some help, that less stress?

    [00:44:23] Mara Yale: Yeah, a lot of what I learned from the Hand in Hand Parenting is about epigenetics. And if we as parents take care of ourselves and our stressors, then we’re gonna be better regulated in our nervous systems. And we will be less likely to snap when our children invariably push our buttons. We’ll have more equanimity, more ability to be resilient. And that models resilience for our children and models regulation. And really, children can’t learn if they’re not in a place, in a zone of regulation.

    [00:45:00] So I think it’s crucial

    [00:45:02] Mara Yale: for the parents to take care of themselves and it’s self care that goes beyond a day spa or a night out. Something that actually has to happen at the nervous system level for parents in connection with others so they don’t feel so isolated and that the stigma is removed completely.

    [00:45:23] Carole Blueweiss: What is some advice that you can think of that you think is so important for parents to keep in mind?

    [00:45:29] Mara Yale: For parents and other caregivers, I think it’s essential to recognize that this journey is long. It’s a marathon, it’s not a sprint. There’s not gonna be one silver bullet. As a scientist, I come at it from an observational science point of view, so you might try one thing and see if it works or it doesn’t work, and tweak it and try the next thing.

    [00:45:52] It’s not a hard science. Nobody’s gonna be able to tell you do X, Y, and Z, and your child will land on the moon. It’s very organic and you have to be in it for the long haul. And to be in it for the long haul, the first thing is to figure out how to love and enjoy your children as they are right now. And that all of this focus on rehab has to be integrated with the kind of family life that you envision, and maybe you have to modify the kind of family life that you envisioned before you had your child with special needs, but you still have values.

    [00:46:32] For me, reading has been a core part of family life from the beginning, and I’ve kept that going all the way through, and that’s something that, you know, is accessible regardless of level of ability. So I just think that the finding other things that matter to you as a family and keeping them going as the primary drivers for how you’re gonna structure your family life are crucial.

    [00:47:01] And if that’s hard to do, to recognize that it’s okay to ask for help and there may be a process of grieving for the diagnosis or the struggles that your child’s having, and to feel free to get that help that you need and support and that those issues can emerge at different points along this long journey.

    [00:47:22] Carole Blueweiss: In your experience, what has helped you the most?

    [00:47:27] Mara Yale: What’s helped me the most is a combination of community, all different kinds of community, and then also trusting my own expertise as the expert on my children and being their best advocate. So all the experts that we see are consultants, in my view, and I’m the one who’s directing the show. So it took me a long time to get to that place, and part of the journey to get there included hearing that and seeing it modeled by parents of children who are a little bit further along.

    [00:48:05] Carole Blueweiss: So would you, I hear that a lot from parents, as saying that they came to the really important conclusion that you need to really trust yourself and that the instinct in the beginning is to look to the professionals and the experts, and then you come to realize that no one has the answer, necessarily. And the reason I started this podcast to begin with is because parents have so much knowledge, and I believe the parent is the expert when it comes to their own child. The idea of really trusting yourself, is there a way to fast track that or do you feel like you have to go through that whole process of talking to all these experts and doing all the research and then you come to trusting yourself?

    [00:48:45] Mara Yale: So that’s an interesting question about how the trust in yourself emerges. So I think there’s absolutely a learning curve. Like I said, I had no idea that babies could have strokes. So there’s a whole lot that follows on if a baby can have a stroke, what does that mean for their physical, cognitive, social, emotional development?

    [00:49:06] So there’s so many aspects of that I had to learn, but you’re with your child way more than any practitioner that you see once a week for 20 minutes or 30 minutes for a therapy session, or even if it’s an intensive that you do over a period of time, you’re still with your child. And you care more than anyone else, right?

    [00:49:33] Like you’re invested in the outcome of your child and maximizing their potential. And the potential could be quality of life. It’s not some specific ideal of how they’re gonna be, but you’re the most invested in how your life’s gonna be as a family and how your child’s life is gonna be. So I think it’s a process.

    [00:49:56] What I think we could do to support parents earlier is to offer more forums for them to meet each other. So I’ve started to do that. I’ve been involved through Mass General Hospital in creating two workshops for families with children who’ve had stroke, and it’s really remarkable to see the parents come together and there’s just this hunger for communicating with each other, especially with parents with children of similar ages. And it has a different quality to the online communities, which are also important, but have the distance associated with being virtual.

    [00:50:35] Carole Blueweiss: And so would you consider that a support group? Does that fall under that umbrella or is it a different category?

    [00:50:40] Mara Yale: Yeah, so the workshops are not yet a support group because they’ve been one-time events. I’ve personally run my first parent support group this past spring, and I anticipate running more of those. So really providing some education at the same time that parents get to hear each other’s stories and tell their own story. I think that it’s really different to tell a story about a child who’s had a stroke or other brain injury to other parents who also get it than it is to tell that story within an extended family context or at the grocery store, if somebody wants to know why your kid is wearing a brace.

    [00:51:24] So extending on the theme of community, there are in-person events, CHASA, which is the Children’s Hemiplegia and Stroke Association. It’s the largest organization for supporting families who’ve had children with stroke or hemiplegia from other causes.

    [00:51:42] I knew that they hosted in-person events, but again, like logistically for me with young children, I couldn’t go to these in-person retreats. They were in the south in the summer. I didn’t wanna take my vacation time to go there. I didn’t really get it. In 2016, they announced that the retreat was gonna be in Lexington, Kentucky, and that’s close enough that I could drive there.

    [00:52:05] It was a two or three day road trip to get there, but I drove there with my two children. And we went again to another retreat in Texas in 2018 that was close to where I have some family members. And at both retreats, there were opportunities for the children to interact in the swimming pool, at breakfast, at dinner, bowling. There were bowling outings and ice cream outings.

    [00:52:31] What parents and caregivers can get online in terms of community and support is remarkable, but children get something from other children like them and like their siblings by being together. And we even interacted with horses on one of those outings and got to hear panels of young adults answer questions about what their life was like growing up and what they would encourage parents of younger children to do and not to do. And all of that really helped me get it, the value of understanding and identifying and connecting with community.

    [00:53:09] Carole Blueweiss: Fantastic. And I just wanted you to just touch on, I was trying to find the number of books you’ve read together. I think that’s just a remarkable activity you do with your kids. I can’t find the number, but it’s a big number. Can you talk about what you do with reading and how that helped you during this Covid time even?

    [00:53:27] Mara Yale: Yeah, so we read aloud together. My mother was an elementary school librarian, so I grew up reading a lot and naturally wanted to pass that on to my children. And when Zoe was in kindergarten, I read a book, a memoir called The Reading Promise of a daughter who had read with her father more than 3000 days in a row from fourth grade through her senior year of high school. And Zoe at five said, I wanna beat that number. And I think we’re close, if not there, because we started when she was in kindergarten and she’s in eighth grade now.

    [00:54:05] But it’s not about the competition anymore. It’s really about, especially with teen and preteen daughters, it’s about maintaining connection. And for Zoe, it’s still about reading, although it’s a negotiation what we read. We seem to have gravitated now to nonfiction because if it’s fiction or memoir and it’s too engaging, she’ll take it and read it on her own.

    [00:54:30] So it has to be something we can read together slowly, a page at a time, over months. Mia favors poetry right now. Sometimes she prefers to play games or watch documentaries. So there’s this sense of each of them individualizing that time together for connection.

    [00:54:49] Carole Blueweiss: Fantastic. For both your girls, they’re two and a half years apart with very different, I’m sure, personalities and obviously experiences. What do you wish for them going forward like in high school and going forward to college?

    [00:55:04] Mara Yale: Right now, both of my daughters are in middle school. Zoe’s in eighth grade and Mia is in sixth grade and I really hope that they continue on their own unique paths and they’re already there. So they’ve chosen different middle schools. Zoe is continuing at the bilingual middle school that’s an extension of the bilingual elementary school they both went to. Mia chose a charter school that has an expeditionary learning model, and I think she chose it ’cause it’s smaller and feels a little bit more contained for her, which is a good fit.

    [00:55:40] They have different interests. Zoe’s super talkative and verbal, and Mia’s quieter, and she’s really great at figuring things out. So she loves anything mechanical. Building projects and technology. So I don’t know the specific directions that they’ll go in, but I will continue to foster their love of learning. Keep them in sports as long as I can because they think it’s good for physical and social development. And really encourage them to follow their own dreams.

    [00:56:14] Carole Blueweiss: Is there anything you’d like to say that we haven’t talked about?

    [00:56:18] Mara Yale: There is one thing that I’d like to say, which is two years ago or two and a half years ago, I took the very brave step of leaving my software engineering job of nearly 20 years as a single mother to reinvent myself. And a lot of that journey is based on my experiences parenting Mia in her remarkable recovery. And I’ve become really passionate about supporting other parents and other families because I believe that the outcome that I’ve had with Mia being as functional as she is in all aspects of her life is not an accident. And it’s something that can be taught and be supported if we can figure out how to give that support to families, especially in the early years after a stroke diagnosis or other early brain injury.

    [00:57:11] So I’m really dedicated to that and it’s a deep core passion that’s driving that. I’m super excited to see how that can really help others and set the bar higher than it’s set by the mainstream medical establishment currently.

    [00:57:27] Carole Blueweiss: And how can someone get in touch with you?

    [00:57:30] Mara Yale: My website is marayale.com and I have a number of resources there and I’d love to hear from you.

    [00:57:39] Carole Blueweiss: You have so much to share with everybody and so much experience, and you choose to really help others. So I’m glad that you joined us today on Wisdom Shared, and you certainly shared a lot of that wisdom with us all. So thank you very much.

    [00:57:53] Mara Yale: Thank you. I’m so excited to see the additional stories coming out, and I’m super happy that you’re listening to the voices of parents because I think that they need to be amplified and it’s really important.

    [00:58:08] Male Voice: What will be when you grow up?

    [00:58:10] Mia Yale: I don’t know, maybe a doctor or something.

    [00:58:15] Male Voice: Why would you wanna be a doctor?

    [00:58:18] Mia Yale: Because I feel like that I could, and it takes a lot to be a doctor. So I think I could do that.

    [00:58:35] Carole Blueweiss: Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all our other episodes wherever you get your podcasts, or visit www.caroleblueweiss.com. If you like what you’re hearing on Wisdom Shared and if you feel so inclined, please spread the word and share this podcast with a friend. Or leave a review or subscribe so you can receive some wisdom every month. Thank you for listening.

 
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Carole Blueweiss

Carole Blueweiss teaches organizations and students how everyday activities impact self-image, confidence, and performance. She is a Doctor of Physical Therapy & Feldenkrais practitioner whose TEDx talk has been viewed 250,000 times.

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A Mother Shares Her Journey Raising Her 20-Year-Old Daughter who was Diagnosed With Autism as a Young Child.