Episode 407: The Ripple Effect: Insights From Down Syndrome For Every Journey
3 Jan 2025 · 61 min
In this episode of the Whiny Palooza podcast, host Rebecca Greene interviews occupational therapist and Down‑syndrome advocate Gerilyn Spies. Gerilyn shares the personal shock of discovering her son Lucas’s diagnosis at birth, the gaps she saw in conventional care, and how that spurred her to write Redefining the Reality of Down Syndrome: The Power of an Integrative Mindset. The conversation moves through the core pillars of her integrative, input‑driven approach: using targeted nutrition and epigenetic insight to modulate gene expression; applying neuroplasticity principles to reshape brain development through sensory‑motor integration, vision therapy, and functional orthodontics (maxillary expansion and airway management). Gerilyn explains how traditional output‑focused therapies (e.g., braces, AFOs, tongue‑reduction surgery) miss the underlying need for proper craniofacial growth and neural wiring. She describes active, kinesthetic learning strategies that respect a child’s processing level, and offers concrete classroom adaptations that replace punitive behavior plans with whole‑child, movement‑based instruction. Throughout, she stresses the importance of empowering parents as the ultimate experts on their children, illustrated by the growth of her private Down‑Syndrome Action Plan Facebook group (≈5,000 global members). The episode closes with a call to shift mindsets from deterministic views of chromosomal conditions to possibilities unlocked by curiosity, community, and integrative science.
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Welcome to the Whiny Palooza Podcast. I'm your host, Rebecca Greene. I'm a wife, mother of 3, and licensed clinical social worker. I also have 3 fur babies at home too. My passion has always been to help children and their families. I always dreamed of being a wife and a mother. Parents are always learning through their struggles, failures, and successes and joys. I am no stranger to this wild ride of parenting, and I know behind every great parent lies a team of supportive friends and family. I want to be part of your support system. I want you to know that you are not alone. We are in this parenting world together. Join me every week for insightful discussions with experts on parenting and marriage, as well as other parents who have found the secret to successes in parenthood. You'll learn tips and tricks to make life with your family better than ever. I hope you will follow along with me while we dive into what it takes to achieve a happy family. Hello everyone, this is Rebecca Greene for the Winey Flusa Podcast, and I am I am so excited today because I get to talk to the lovely Gerilyn Spies. Gerilyn, thank you so much for doing this with me today.
Oh, you are very welcome. I'm happy to be here.
Let me tell you about this fantastic lady because you're going to love her. She is an occupational therapist with both a bachelor's and master's degree in the field. Her diverse career encompasses work with adults with developmental disabilities inpatient and outpatient care, rehabilitation, long-term care, and home care. Holy moly. In 2007, that's when my son was born. Following the birth of her son Lucas, who was diagnosed with Down syndrome, Gerilyn embarked on a journey to challenge conventional perceptions of the condition. She delved into the neurodevelopment, epigenetics, neuroplasticity, functional medicine, and nutrition, integrating these insights with her professional expertise to develop personalized neurodevelopment plans for her son. That is quite the tongue twister. Her experiences and knowledge culminated in the publication of her book, Redefining the Reality of Down Syndrome: The Power of an Integrative Mindset. Gerilyn founded the Down Syndrome Action Plan Facebook group, fostering a community that encourages parents to combine their understanding of their children with integrative approaches to neurodevelopment. Holy cow. I mean, that is like so fantastic. I told you before we started recording, I just love what you're doing. I love this new book. This is her book. I'm holding it up for anyone who's watching this. Redefining the Reality of Down Syndrome: The Power of an Integrative Mindset. Tell us, let's start there with this beautiful book. What inspired the book?
Oh, you know, there was a big contrast between having my other two sons. They're both older. I have three boys, two older sons before Lucas. And there was just such a stark contrast between having them in the hospital and holding these new lives and hope and the joy and everything that goes along with having a new baby. And then experiencing the birth of Lucas when the Down syndrome was recognized. Actually, I was the one who recognized it when I saw his beautiful face after birth. It seems like all of the hope and all of the unlimited potential for the future felt like it left the room. It got very quiet. Nurses had tears in their eyes. Doctors came to tell me things that I wasn't really prepared to hear about how different my life, you know, and Lucas's life could potentially be. So at that point in time, I really was happy that I had so much understanding as an occupational therapist to know what was out there, to know what the conventional wisdom was, and then to kind of branch out and carve my own path. And that was where this book was born. It's really the book I needed to read. And didn't exist. And it became my mission to, to spread this message and this hope to new mothers and experienced mothers alike on this road.
Oh my gosh, that's a writer downer. The book I needed. That's— we all need to write the book that we needed. Oh God. So going back to what you said, you recognized it when he was born. Did you— did not know before he was born?
No, but you know, as mothers, I know you'll understand when I say this. My third pregnancy was riddled with what I can only call anxiety. I had an innate sense that something was different, something was wrong. And you know, I kept going back to the doctor and the recommendation, of course, was the full prenatal test. And I was concerned about that because I know that comes with a risk of miscarriage. So I didn't, um, follow through with that, but it was just this. And, and as I got closer to my due date, it was so encompassing. Like, I was convinced that something was wrong, and, and I actually went into having Lucas kind of fearful, like not knowing what it was. So, you know, when he was born—
oh, interesting.
I know, it was intuition. It was an intuition. Yeah, it was. And so I guess maybe after he was born and they put him in my arms and he was crying and he had great Apgar scores, you know, I was searching. I'm like, what was this feeling? And, and that was when his, his beautiful face let me in on his secret.
Well, I'm sure your book is full of so many important lessons and insights for us to all learn about. Can you share a couple insights from your book with us?
I can, and you know, as an occupational therapist, I think I just wanted to say that a lot of these things that I've learned, of course they're tailored to children with Down syndrome and their development and their learning and their health, but it really is applicable to all of our children. The way the brain grows, the way the brain changes through inputs and all the new exciting information out there. So I hope that in, in our conversation today, there's lots of things that inspire inspire your moms who listen regardless of where their child is. But to your question, my insights about Down syndrome, it seemed to me as a professional that some narratives kind of needed to be flipped. And so The first thing that you'll come across when you have a child with Down syndrome is this pervasive idea that because it's chromosomal, there's not really anything that you can do. And for a long time, that fixed mindset kind of guided a lot of things. Being a traditional therapist, a lot of, a lot of approaches for our children center on output and performance, modifying how our children do things. So for example, For example, if their ankles don't have the stability to bear weight, they might offer an AFO or a built-up pencil for handwriting. And the flip that I saw as being necessary is that what is the goal? The goal is to change the brain for integrated output and performance, and the only way to do that is through input. So a lot of where I started on this journey was looking at different inputs and what that could mean to change his health, development, and learning down the road. And that could be everything from targeted nutrition to expectation, to my own mindset that I brought, to teaching with joy instead of relying on performance-based and objective measurements, right down to neurodevelopmental environmental inputs and sensory integration, all of it, taking an input-based approach to his development.
Oh my gosh, I'm already teary listening to you. Whoo, that is amazing. I mean, you— I hope you know how wonderful you are. I mean, you— he picked the right mom. That's all I can say.
Thank you. I feel fortunate. I feel like when you asked me about his birth, it couldn't be a starker difference. My, my life, my education, even my, my motherhood with my other boys, um, was, was very linear. It was very, um, I knew what I knew. And then he was born, and I felt like the bottom dropped out, like nothing was set in stone anymore. I didn't know anything, and so we needed to create it together.
Amazing. Well, and you brought up nutrition, which I don't think people, I don't think people realize how important nutrition is to our children. Can you talk about that a little bit?
Of course. So, you know, for all of us, when it comes to nutrition, it doesn't matter whether it's us or our children. There's diet protocols and there's different diets and there's this pervasive idea that to eat less, move more and Any of us who have ever tried to maintain a healthy weight knows that that isn't always the best way. But when you take a look at a child whose metabolism and system has been put together with extra genetic material and unknowable excesses and deficiencies, um, a one-size-fits-all approach doesn't even scratch the surface. Um, our children's digestive systems, uh, have difficulty absorbing fats. They have difficulty absorbing minerals. They have difficulties breaking down the proteins in dairy and gluten. And so, a traditional approach may be to, you know, if they're in the absence of an allergy, to just recommend a balanced diet. But what these things do is if there's an underlying sensitivity or a difficulty in the way digestion takes place, it creates this inflammation that simmers over time. And we know that that leads to autoimmunity. And our children are, are so many more times likely to have not only one but multiple autoimmune conditions. And looking at nutrition as the primary vehicle, and not only just what to remove but the proper things to add, you know, the, the talk about nutrition and vitamins, I think we really underestimate the power of that when you're looking to add healing to the gut or the brain's preferred source of healthy fats. Filling these things into, into your plan, into your approach for your individual child really gives you immense power in affecting their health and development.
And I'm going to guess going along, you've had to tweak certain things based on, I mean, based on our individual child and what works with our children.
And that is exactly right. That's why one of the things that I emphasize, not only in the book but in my group and in all the conversations I do, is parents need to be empowered as the experts in their children. If mom tells you, "You know, he doesn't act right after he eats something," you know, go with your gut. You know, look into that, go with that despite the conventional wisdom that, you know, well, in the absence of a true allergy or in the absence of an autoimmune condition, you know, a balanced diet is good. It is a constant state of looking at what they're eating and how they're responding. And for our children who don't have extra genetic material, it's not as intense. My older boys, like, they know, they know how to eat, of course, now that they're older, they make their own decisions. But with Lucas, it is very much a constant constant reevaluating of his health and how he's doing and what he's eating.
It's so interesting. You don't realize how much it affects them. And you have an extra added bonus because you're an occupational therapist, which is amazing. So can you talk about how that influences your parenting?
Of course. So, you know, of course I'm biased, but I think that when you look across the disciplines, occupational therapists are— when you look at the primary therapy team, they're one of the most holistic practitioners in the group. Our emphasis not only on gross motor, fine motor, but the interpersonal, the intrapersonal, the sensory integration, it gives us really a holistic look of how things need to be integrated in order for development and learning, and As far as it affecting my parenting, I have always been of the mindset that opportunity is the best thing I can give my children. When you see an interest sparked in them, just giving them the opportunity to explore it, putting them in places where they have the opportunity to become who they're going to become. And with Lucas, It was even a little bit more important than that because sometimes the world, well, oftentimes the world has very low expectations for people with Down syndrome. People with Down syndrome who have kind of gone against the grain and achieved things, there's a dismiss of them as simply being high functioning. Without question, our children have a wide variety of skills and of interest and of potentials, but to take a wide brush on the population of people with Down syndrome and to think that, you know, 75 years ago, it was fact that people with Down syndrome could not live outside of the institution. They couldn't learn to read. They couldn't go to school with peers. They couldn't live live beyond the age of 10. That was fact 75 years ago, and now today we have seen some wonderful people with Down syndrome who have gone from those doors of the institution to the doors of a college campus. We saw the graduation of the first lawyer, first person with Down syndrome to complete law school this past spring. And I think the most important thing about that is that it's not about outcome. It's not about, well, you know, what my child is going to achieve, but leaving room for the potential of achievement, and then using that to give opportunity to use your expectations, and really fundamentally to change our mindset of what we can expect from our children and their development moving forward. It's unknowable.
I mean, such a long— it's come such a long way. I mean, I don't even have words for it. It's amazing, the difference, and hopefully it will keep improving.
Well, and I think one of the things that we run into a lot is if we take our child with concerns. So if I took Noah or Ryan to the doctor and I said, listen, they've suddenly gained a lot of weight, they're losing their hair, they're having difficulty learning in school, they have some sensory-seeking behaviors, the doctor would move heaven and earth, I'm certain, to find the answer. But if I took Lucas with that set of concerns, the answer is, well, that's Down syndrome. And I think that changing our mindset to never accepting that as an answer is the place to start because there's all kinds of answers out there. There's answers in the area of nutrition, exercise science and all the new beautiful epigenetic research coming out of the community, looking at how to affect Alzheimer's and the path of that. And that's just to name a few. There's so much out there that can be applied. To believe that there's no more progress to be made because it's a chromosomal disorder is missing the mark completely, I think.
Well, and I'm wondering, based on your experience, Does it also have to do with finding the right people to support you?
It does. And that's a very interesting question because in my group we have nearly 5,000 international members. It's unbelievable.
Wow, that's amazing.
It's unbelievable. And these moms, I am telling you, they are a force. Some of them were business people and now they've gone back to school and they have a homeopathy practice for kids with special needs. I mean, these moms are just amazing. But one thing we all share is from the time we hear the words Down syndrome for the first time, whether it's when we're expecting or whether it's after birth, our mindsets are fixed for us. So we are told, you know, you're going to go to these specialists and we're going to look at this and he's likely you know, gonna have some problems in this area, and moving forward, you know, there can be a plateauing of learning, and it's like every step of the way, whether it's health, development, or learning, there is an attempt to fix our mindsets, and I honestly think the very most critical thing before we can even find the proper supports, which is necessary, is to change our minds. In the very early days, you asked about what inspired me to write the book. I actually started writing it 15 years ago, and I never published it because I had this sense that it was— it might be perceived as, without the experience behind me, that it was just wishful thinking or maybe denial or, or things of that nature. But I know now that unless you change your mindset to things that are possible, you don't ask the questions, you can't find the supports, you can't find the answers. And as I wrote in the book, it's been amazing to me on this journey how every single time we were presented with an issue that we needed to solve, the right person appeared at the right time. It is the most amazing thing. I, I write in the book about how when Lucas was about 15 months old, he had had recurrent upper respiratory infections. Two of them ended up in the emergency room with steroids and breathing treatment. And this particular day, the last time we were there, the doctor told me that, you know, well, it's common for kids with, with Down syndrome to have recurrent upper respiratory infections. It oftentimes leads to asthma, reactive airway, you know, all of these things, and it'll be just something that you manage. Well, I left that day and I cried in the car and I decided we were never going back. And I already had the idea, I had been learning about the idea of root cause medicine, functional medicine, and a connection in my life had given me the card of this amazing doctor who lived in the next town. Oh, gosh. And I called her up, she ran this amazing place. I'll tell you, she no longer practices Her name was Dr. Mary Schutz, and she ran this beautiful place called Seedling Developmental. And I called her up and she said, bring him over immediately. He was so sick. He was tiny. And she took a look at his blood work and she encouraged me to learn all I could. And she got his, his metabolism and his, his systems balanced. And I can tell you today, Lucas is 17 years old and we have never been back to that hospital with an upper respiratory infection.
Wow.
Never once.
Oh gosh. See, that's inspiring. I mean, people don't— there are a lot of people who would just listen and go with that. And I love that it didn't sit well with you and you went after a different path. So kudos to you.
Well, and again, I feel like flipping narratives, right? Being— going from that established medical system where the doctor had all all the knowledge and told me what to expect and that was it, to going into this other environment where the very first thing out of her mouth was, "You have to learn all you can because there's answers, but we'll find them if you understand this information because you know Lucas the best." It was a game changer.
Wow. Oh my gosh. Who says that to parents? Who says that to parents? That's amazing. I love this lady and I've never met her.
She was amazing. She was amazing.
So, you know, I mean, I have 50 questions to ask you, which I won't, but going back to this experience, I mean, was there any, were there any other experiences where you found answers going a different route that you can think of? Is that like, like every area? Yeah.
I will give you a Down syndrome specific one, which is part of my mission to just not only educate parents and professionals alike, but also to affect change within the system because it is that critical to the health and development of our children and it should be a covered cost. So when we think about people with Down syndrome, we all get a vision in our mind of the distinctive eyes, their almond-shaped eyes, the extra palpebral fissures, and we also all believe the stereotype that they can have a large tongue. Well, they don't actually have a tongue that is too large. In fact, currently, if the tongue is too large for the mouth, they still do a horrible surgery called tongue reduction. They will go and they will cut the tongue to make it fit the mouth.
Oh my gosh.
And I always, I always use the analogy like if you lived in a one-bedroom house and you had more children, you would not get rid of a child to fit in your house. You would get a bigger house. So that led me to a whole bunch of research and children with Down syndrome unanimously identified as early as within utero have what's called maxillary hypoplasia. So the maxilla forms the middle third of your face. There's the top third, which is from your eye orbits up. There's the bottom third, which is your lower jaw. And then there is this middle third of your face right here, and it forms the palate of your mouth. And also internally, where it sits, uh, on the brain side, it has this bony cradle which houses your pituitary gland. In our children, because of a genetic anomaly, this bone does not grow at the pace it should. It's called maxillary hypoplasia. The top third and the bottom third outgrow it, and it remains, um, undergrown. Some people believe that's the reason for the distinctive shape eyes, because the optic nerve has to travel through that bone to get to the eyes, and they believe it's sheared because the bone is too small. But also, it prevents proper thyroid function. It prevents proper growth hormone, and if you think of all the list of things to expect with our children, they're short and they're overweight. The pituitary gland secretes the growth hormone. It secretes the thyroid hormone. They have problems with thyroid. It secretes nighttime hormone that help them be continent at night. It has all— it balances out serotonin. This bone undergrowing significantly impacts their airways, so they have problems with their oxygenation, they have sleep apnea and everything. And all along, things are looked at with our children as output. Well, they have problems with sleeping, so we're gonna give them a CPAP machine. And their tonsils are too big for their throats, we're gonna remove their tonsils. And their tongue is too big for their mouth, so we're gonna cut down down the size of their tongue, and sometimes their teeth don't come in. That's just Down syndrome. Well, it's not. Their mouth is too small, so their adult teeth are anchored up in the bone and they can't drop down. Every orthodontist does palate expansion, and there have been studies on children, um, going back to Dr. Weston Price, that shows rapid maxillary expansion repeated as they grow to keep pace of this bone with the top and bottom third of their faces ameliorates those issues. I have done so much work with so many people. There is now a functional orthodontia out there called Airway Management, and they are focusing on just this. Unfortunately, it should be standard of care for our children as soon as they can accept that appliance in their mouth It should be standard of care and it should be covered. You know, lots of children with Down syndrome are reliant upon their Medicaid and they're reliant upon Social Security, Supplemental Social Security, and they'll pay for all of these surgeries and they'll pay for repeated infections and they'll pay for CPAP machines, but they won't pay for a palate expander. That's literally a game changer for their health and development.
Unbelievable.
That's a Down syndrome-specific one, but a general one is, you know, any child who has difficulty reading, reading comprehension. There seems to be this narrative in education. There's a debate, sight word versus phonics, right? And I don't think either of them work for everybody. I don't think, and I think there's some kids that neither of them work for. With Lucas, and I think there is a set of children with neurodiverse needs as well. We did what was called the Doman Method. It was sensory flooding. So, from the time he was 12 months old, I made, you know, 10 groups of 10 words, big words like breeds of dogs and countries in Africa, and I would just flash it to him very quickly to sensory flood his visual system. To form maps for words. And if you think about mature reading, we can play hangman and know what it says with only a few letters and most of them missing. We don't have to sound them out. I think that getting our children reading early is a game changer, and what cross-patterning the two sides of their brain. So, if you have difficulty with reading comprehension, going back to the fundamentals of creeping and crawling and left and right hemispheric work is a way to input. So those are just a couple of examples, but there's a million.
Oh my gosh, I mean, we could literally talk about this for hours. I mean, this is so fascinating. Well, and I'm going to tell you, there are a few big words that I think that keep coming up that I think that you need to define for us and explain how they're supportive to our kids. So we've got neurodevelopment, We've got epigenetics and we've got neuroplasticity. Huge words, too big for me. Help me out.
And they're huge words and they should just have simple counterparts because they're game changers. So neuroplasticity just means that the brain is capable of growing and changing from inputs.
Hmm.
So, Awesome. If you, um, that, that's the argument against if a child has poor handwriting, having them practice with a special pen over and over again trying to improve their handwriting. 9 times out of 10, if you have jammed up handwriting or handwriting that goes up or downhill, the problem isn't here with the motor output. The problem is with the visual motor integration, the visual integration coming in. So that's just neuroplasticity, the ability of the brain to grow and change from inputs.
Okay.
Epigenetics is awesome. That is a study of science, a branch of science that studies how genes and their expressions are turned on and off by what you input. It. And the best example I can give you of this is someone who will say, "Well, I have diabetes type 2 in my family. I'm predisposed to diabetes type 2." Yes, you are, you have the genetic predisposition, but the lifestyle things you choose, your targeted exercise, your targeted nutrition, possibly supplementation, all your hydration, all of those things will determine whether or not those genes are expressed. They may never be expressed in you. That is a game changer for a child with extra genetic material. And before I go off on, on how important it is to children with Down syndrome, let me answer your final one, neurodevelopment, right? So Traditional therapy, traditional approaches to development, we all know the first year's milestones, right? When you can expect your child to sit, when you can expect your child to walk, or run, or any of these things, they're time-based, and in my opinion, they're static, right? It's a motor output. So, when you see your child sit on his own for a very first time, that is a static milestone. Neurodevelopment is not concerned with what and when. It is concerned with how and why. So, if your child skips crawling, and this is a big one as an occupational therapist for all of our children, we will hear over and over again, the CDC just took crawling off its list of red flags for development. So, now it's no lo— and you will have therapists tell you it's not a big deal if your child never crawls. I'm here to tell you that is the biggest deal because crawling is not a milestone, it's an intervention. Lucas was on a crawling program long after he could walk and run because it's integrative. Sensory integrative, reflex integrative, motor integrative, all of these things come from, from wiring the two sides of the brain. So, when we take a neurodevelopmental approach, I don't care how long it takes for that child to sit on his own. I want him to be getting in and out of sit with the appropriate motor patterns. We don't want, um, we don't want him spreading his legs and flipping up over his widespread hips. We want him going through the natural progression. If it takes longer for him to sit on his own, that's okay. But the foundation upon which he learns to sit is now the foundation for how he walks. That's the foundation for how he learns. That's the foundation for his processing and his cognition. These sensory motor integrations during development set the stage for everything that comes next.
My goodness, I had no idea. I needed you when I had babies. Where were you?
But you know what? I, I am so grateful that the majority of people have no idea because our babies make it look effortless, don't they? Like one day, one day they're sitting and one day they're crawling and one day they're walking. And it's this miracle of neurodevelopment. And we never have to stop and think why until we have a baby baby who so desperately wants to get across the room to play with their brother, so they're doing all kinds of things. Their leg is sticking out, their butt scooting, and you're like, "Well, that isn't right." And then you have traditional thoughts say, "Well, what's important is that he's getting across the room," and it's not. Let's make sure the development is neurologically appropriate so then the foundations for focus and attention and all those things, that those reflexes are being integrated properly so that learning is then possible on this solid foundation.
Well, and you'll probably relate to this. My firstborn, who was born in 2007, did everything exactly, you know, first child, you're reading all the books and he was doing everything exact. And then my daughter came along And she was like, I don't feel like walking. And I was like, come on, Ella. And I like, he just wanted to run. And she was like, I'll get to it.
Well, you know what? If you ever do a podcast on the second born, I'm your girl because my second born.
Okay, we're going to do this again. We're going to do this again. Oh my God. I could literally talk to you for hours and hours. Like, I have so many questions. Can we talk about education.
Yes.
And changing, redefining it.
Yes. So I preface this with saying, um, I am very aware that what I am about to say comes from a very, um, privileged viewpoint. I was very lucky and privileged to be able to, to forge the path I did with my son. It's not available to everyone. And what one of my missions with the new endeavor is, is to give parents all the benefit of all the things that I've learned, bring in all the people and the experts who can teach them so that no matter what situation their family is in, whether both parents have to work, whether the child has to be in daycare, no matter what their circumstances, there is always inputs to effect. And that, that is my mission. In general terms, when we look at education, it is performance-based, and so there's this idea that you should be able to show what you know. This is most dangerous on one of the extremes. Some of our children are nonverbal, especially those with a dual diagnosis with autism, because of that apraxia. There is this idea that there must be a lack of cognition because they can't speak, and it couldn't be further from the truth. There is a difference between processing ability and cognition, and when we look at our children with Down syndrome, what does what do you need to process? The two sides of your brain need to be wired efficiently. You need to be organizing all of your sensory input appropriately. You need to have all of the primitive reflexes that cause you to do and feel and act integrated. You need full integration in order for your processing to move on, and by processing I mean things like working memory, things like immediate immediate recall, things like being able to switch your attention, focus, all of those processing things that we see. Well, with our children, you know, we see them in their preschool classrooms, and they are doing the exact same things everybody else is. In general, a 3-year-old processes the world at a 3, so if I said to a 3-year-old, you know, "Repeat this after me." Apple to love. A 3-year-old can say apple to love. That's a 3. When the child turns chronologically 4, generally their processing boosts to a 4. By the time they get to kindergarten, they're processing at a 5. Now, traditional average for adults today is between 7 to 9. Back in the day before our smartphones made us less smart, um, when people memorized speeches and things like that, their processing was up, I think they, you know, 14, 15, it was amazing. But today we're about the digit of a telephone number, 7, 7, 8, 9 for our working memory. With children with Down syndrome, because it takes so much longer to integrate the foundation, they get stuck at a lower processing level. For a lower period of time. This causes big problems when they go to school. When they are in second grade and they are still processing the world as a 3-year-old, we see things like he can't sit in a seat through, you know, story time or math class. He can't sit in a seat. And now all of a sudden we come in with our behavioral approaches. Well, you're gonna get a sticker if you can sit in your seat. Through math class, and the focus becomes he can't sit in his seat through math class, and what gets lost? Learning math. So now this gap starts widening. He doesn't know math. He can't go to 3rd grade. He can't even add or subtract yet, and the gap widens and widens and widens. The tact I took with Lucas, and admittedly it was a huge gamble, I thought, that if I could keep him learning grade-level academics by presenting it to him in a way his processing level could accept, eventually his processing would catch up and he would have the knowledge base. I homeschooled, I did not send him to school, and we did things like I We never read, you know, I don't know, the stories that there were. I was heavy into literature and he loved history. So I would do ancient history and we did Beowulf for kids. I remember he was in first grade. He was like 7 years old and he wanted to be Grendel for Halloween and like these classics and working on writing and breaking down. When he learned to write, I would have sticky notes on the wall and have him do his outline so he could visually manipulate the information instead of having to hold it all in his brain. I feel like giving children active learning methods with kinesthetic— and it's not just kids with Down syndrome, anyone who is a struggling reader, anyone who's struggling in math, anyone who's struggling with learning is telling you we need an active learning model and maybe look at processing. Do the work of processing. Go back to those neurodevelopmental pieces and work on the integration to boost the processing so now they're able to sit in the chair and they can integrate what they're listening to and forming the motor output to take notes and put the focus back on how they process their world in order to learn and give them the respect of giving them that grade-level information.
My goodness, it needs to be so tailored to each child. And I honestly have thought about this, even, you know, even with my own kids, that I feel bad for teachers. You have a room full of kids and every single child needs something different.
Yes. Yes. And there, and now, you know, We look at the statistics of, of the incidence of autism and ADHD and this huge, huge spectrum of what we call neurodiverse learning needs. There isn't any way the teachers within the system can do what they're naturally gifted at doing because because the system isn't working anymore. I think there's so much money, especially in special education, but it's based on how the system has operated since the advent of public special education public law in 1974. It hasn't really changed, but our children are changing. The complexity of our classrooms are changing. And if you have a child who is making noise and trying to run out of the room, you're dealing with a behavior. The question isn't, "God, how am I going to get that kid to multiply, you know, or long divide?" And so, it's kind— and by the way, something I feel very, very adamant about with all of our children, if you take a look at a classroom and you identify the children who quote-unquote are the behavior problems, those are the children that should not be having behavioral approaches applied.
I was gonna go there.
It creates this power struggle. Do you honestly believe that the child wants to be a problem? They're covering for something they can't do.
So let's talk about that because that was literally my next question. So I have seen the behavior problems at school. I have seen what, what, what is going on. And I think that a lot of times they don't know what to do.
Right.
And they're trying and they're trying multiple things. So any advice to the parents and the teachers dealing with behavior problems?
Absolutely, and let me just answer by contextualizing it a little bit. Let's take a look at that little boy who maybe is in the 3rd grade math class and is a complete disruption and can't sit still and can't stay, and he's trying to run out of the room or banging things. You're asking him to sit at a table, and maybe he's got a worksheet, or maybe you're working on the board, and it is a static sit and listen environment. When I taught Lucas to add and subtract, I put painter's tape on the floor and I turned it into a number line, and I had him jump forward to add, and I had him jump backward to subtract. And that was what he needed to understand the put together and take away. And the same thing when you learn how to divide, it was dealing into groups, and when you learn how to multiply, it was taking all the groups and bringing them together. I think turning lessons into more active learning styles, especially in the young grades where all of the children will benefit from an active learning model. Even our oldest children who are brainiacs and by the book and can do it, they would benefit from an active learning model in those young grades. So I think, you know, instead of using our OTs and PTs and speech therapists and behavior specialists and psychologists and social workers and case managers to pick apart the IEP and say, well, I'm going to do this piece and I'm going to do this piece, if we could get them all together in one approach that says, "Look it, let's look at this kid as a whole. Let's incorporate active learning." Maybe he can't be in a classroom for this part of the lecture, but instead of pulling him out to do OT and working on just fine motor control, maybe he's coming down to the OT room to have this whole body math lesson. Maybe he's going down to the speech room to do this active integrative reading comprehension. So instead of sitting here with my paper and highlighting main idea and everything, maybe we draw a huge Venn diagram on the wall and we have him with sticky, sticky notes put the compare and the contrast so he can see it. Active learning models so that the child can understand. And then the very most critical piece is understanding, especially when our children are little, They don't know that they're processing the world different than the rest of us, so always, always, always, always suspect vision first because even if you go to an ophthalmologist and he gives your child glasses and their acuity is fixed and the eyes look like they're perfect, we got to— I think it was 3rd grade, 2nd or 3rd grade, Lucas had been fluency. Lucas was an amazing reader for years, but all of a sudden we had a problem with spelling. Like, literally, like, if you got even a familiar 5-letter word like house, he wouldn't have any idea. And I'm like, I know this is not cognition, this is something else. And I took him to a developmental optometrist who did a vision assessment on him because there's 22 components of vision besides just the, the acuity and the eye health. And when he tested him, what he realized is Lucas's left eye was tracking the text and he was suppressing his right eye because his right eye was bouncing from word to word, even though they look like they were working together. Um, so we did a neurodevelopmental vision program, which is another one of those things that should be covered for all of our children because it's a life changer for education.
Oh my gosh, do I agree with you. So, if a child is being aggressive in class, just one of the many things I have seen, they're communicating something isn't working.
Yeah. Yeah. And I think, I mean, obviously, you know, to look at a classroom today and see that child who's being aggressive, of course, that needs to be dealt with. What I think is that how can we look at a more forward-looking approach? Chances are he didn't suddenly become aggressive. What did we miss, you know? Was it, you know, last class? So, let me just tell you a quick story. Lucas is really independent. We decided to let him go to middle school in 7th grade, and of course, simply because he had a label of Down syndrome, they gave him an aide. Well, one of the things about Lucas, because he's always grown up that way, he's very prideful of being independent. He figured out his locker, he knows where the rooms are, and he is on time. But the aide was approaching him as she had other children with Down syndrome that she had been an aide for, and so it was a constant, "You need to wait for me." And it was well-intentioned, it wasn't anything she was doing wrong, she was like, "You need to wait for me. She would yell, Lucas, stop, wait, you need to wait for me, until Lucas became so angry he verbally lashed out at her. And I got a call about his behavior. I'm like, wait a minute. I said, can we try not giving him an aide? Can we let him go? So, it was like second semester, they pulled the aide altogether and, you know, So now when I hear he's verbally lashing out, I, I always question like, what was happening? Where do we intervene with this? And once you figure that out, um, at least with Lucas, that's very smart.
Well, and I want to talk about your group before I let you go. Tell everybody your group's title, and I want to hear stuff that's coming out of this fabulous group. Like, what are people learning, sharing?
Well, it started 14 years ago. I started it, I just pulled up Facebook one day and I clicked create a new group and I called it the Down Syndrome Action Plan and it's a private group. I obviously was not about marketing or anything. All I wanted was a couple like minds on this journey. I wanted a place where I could go where someone would say to me, yeah, I think there's an answer to that, let's look. Whether we found the answers or not actually wasn't even the mission, it was the mindset. Um, so now fast forward 14 years, there's 5,000 members and they're all over the globe. And these moms— there is, um, a woman who runs a tech platform in Germany, there is a functional medicine doctor who lives in a village in Africa, there is a mom in Saudi Arabia who just bought a huge building to turn it into a neurodevelopmental school because children like ours aren't even accepted into educational systems in that part of the world. One of my best friends on this journey that I found lives in Australia, across the globe, who has redefined reality for her and her son so many times. There are doctors there are nutritionists, there are therapists, there are these brilliant minds from all over the globe that have now come together. And it's so inspiring to go on the group and somebody will ask a question and there's like 15 people answering with these great out-of-the-box questions. And at one point I'm like, gosh, is this overwhelming because there's so much information? And then we all realize Not everything is for everyone, and that's the point. We honor our expert knowledge about our child and their needs, and then we seek out the answers we need. And that is the mission of the formal group moving forward that I've put together. And I'm a huge, I'm a huge reader. I'm a knowledge nerd. I think I'm a knowledge hoarder. I will read anything, and every single thing I read, I'm like, "Well, this has applications to what we're doing." So part of the mission of the group is to bring these thinkers from outside the world of Down syndrome in to see what can we add to our action plans. What Dr. Carol Dweck, who wrote her book on mindset and her groundbreaking research all those years ago, I'd love to have her on because the biggest hurdle our mothers have to overcome is mindset, you know? Yeah. What could be possible? Well, nothing if you don't think it is, you know.
Oh, you're my kind of lady. I, I'm so, I, I'm so touched and inspired by you. You're just doing amazing things out in this world. And, you know, you know, I could talk to you for hours. You realize that. Is there anything that I didn't ask you today that you think is super important that we didn't touch on?
You know, as far as my, my path and my mission as it pertains to Down syndrome, I think that we've covered as many bases as we possibly could in the time allotted. But I think the one thing beyond even what we're doing and what we're talking about comes down fundamentally to who we are. And at the root of it, we're mothers. And before Lucas was born, as a therapist, I practiced in all those areas. I was part of the therapy team. And if your child had an accident, I knew what OT was going to bring to the table. And I was gonna teach you, and I was gonna tell you, and I was gonna maybe give you some follow-through to do at home. And I worked with adults with developmental disabilities smack out of college. I worked in a group home while I was in college to get some information, and there were just some things that weren't possible. And we would, we would get together for meetings, and here would come the parent of this 30-year-old asking questions, and there was this sense that, you know, well, the time for this growth has passed, you know, we're gonna work on this. And that day at 9:17 AM on August 30th, 2007, it all fell away. There is no one on this earth that should be more empowered to take the lead than a mother, and I don't care what the circumstance is, she should be empowered to take the lead. And I believe that's where we change Everything. We empower moms.
Oh my goodness, I love that message so much, and we aren't taught that enough. I don't think we're taught that enough. We think we need to listen to the professionals, which I'm not telling you not to. I'm just saying we know our kids better than anybody else knows our kids.
To never stop looking. The professionals are great to get the information, um, But to never stop asking if somebody says that something is impossible. I mean, if we were faced with a life-altering diagnosis, we would get a second opinion. It's the natural course of things that somehow as moms, we don't always honor that within ourselves. And that, I believe, is the most important thing we can do.
Well, I don't even know how to thank you enough. For your time and your expertise and all of it today. This was amazing. And I want to show them your book again. Get this book. Here it is, the beautiful book, Redefining the Reality of Down Syndrome: The Power of an Integrative Mindset. Beautiful. Thank you so much.
Thank you so much. I— this was wonderful.
This is Rebecca Greene, and I want to remind everyone to spend every day laughing, learning, and loving. Thank you for tuning in to the Winey Palooza podcast. If you like what you heard, please be sure to subscribe so you never miss an episode. While you are there, leave a review. I love to hear your feedback. Thank you so much for listening. Until next time.
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