Myths about Down Syndrome in Children

In part-2 of this stimulating conversation of Down Syndrome, Geralyn leads us through common misconceptions and wrong labels that get attached when a child lags behind neurodevelopmentally. We can also chat about the role of diet in brain development. Subscribe Now to FUNCTIONAL NUTRITION and LEARNING FOR KIDS, a podcast for Education and Nutritional Support for kids with Disabilities.

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Disclaimer: The information in this Podcast is for educational purposes only. Vaishnavi Sarathy, Ph.D. is an educator, not a doctor, specifically not your child’s doctor. Please consult your physician before implementing any supplement or diet recommendations.

Audio Transcription:

Vaish:

Hello, you’re listening to functional nutrition and learning for kids. Welcome back to part two Equal Education in Children with Down Syndrome of my discussion with Geralyn Spitz. Today, we talk about the role of diet, neuroplasticity, and how they intertwine in the development of a child with neurological differences.

Geralyn:

And so, if you have a child, who their way in is sensory, you need movement, you need tactile you need. And might I just take a sign to say you need to continue working on that organization. I think many times in traditional education, they don’t believe that our children will progress beyond their processing level, because it takes such an effort to move that needle, that they intertwine where they are neuro developmentally with what they can achieve academically. And I think that’s completely not right at all.

Vaish:

So as these so as these kids develop through the class, and as the sensory needs are not met, what do we do, and as the processing needs are not met, what we do then is we accumulate labels.

Geralyn:

Absolutely, they are the biggest one that they accumulate somewhere around kindergarten to first grade I’ve seen it is attention deficit, they can’t focus, they can’t sit in their seat, they can’t sit still. The next one that they accumulate it unfortunately, very, unfortunately, is oppositional defiance.

Because if I’m, if I took my chronological three year old, and I made her sit through a sixth grade science class, and every time she tried to get out of the seat, I would apply a negative reinforcement like, well, now I’m sorry, you lost the ability to have recess with your friends sit in his chair, Oh, you got up again?

Well, now you lost your ability to use the computer during free time, sit in this chair. And then the third time, maybe I remove her from the room and take her to the quiet area, I would be pretty aggravated to. And I think that treating a neuro developmental issue as a behavior is what creates the aggression and the frustration in our children.

Vaish:

Oh my god. Absolutely. And there’s these issues can cascade to so many levels. And we were talking about restraint in schools, we’re talking about seclusion, where in the past, I’ve talked about the lack of assumption of competence, but and I haven’t ever talked about this piece. So in some children, it can simply be I think everything is kind of meshed into intellectual competence, whereas that that particular concept has many legs, as you said, not not just inclusion, but intellectual competence has many legs, and the child may be completely naturally confident, but since orally incapable of sitting in the class,

Geralyn:

exactly, yes, you can’t. And so if you, if if, you know, during this IEP process, if you looked at the fact that the child can sit and see. So um, you know, what is our goal to get the child to sit in the seat, you put all these processes into place to get the child to sit in the seat, many of our children will ultimately sit in the seat, and they will be looking straight ahead and you’ve achieved your objective, but they’re not learning.

They’re not neurologically wired. In fact, I would build the case that until a certain age, very few children are neurologically wired to sit in a chair and learn by listening. I would say that most if not all, primary, elementary grade students would benefit from an active learning model.

You know, maybe for math, you’re on the floor with a whiteboard. And maybe you play a you know, you throw your vocabulary words and definitions on the floor, and you have them jump from the word to the, to the definition, and you have competitions to see who can jump to the right, the quickest and I mean, taking each individual child and figuring out what makes them tick and putting the academics on the proper inroad is what needs to happen.

Vaish:

Absolutely. One of my huge aims in this podcast and we’re taking a segue here is to bridge the world of functional medicine. And biomedicine, even though they’re not always necessarily the same thing. And biomedicine can be a little bit more intervention than in my mind than functional medicine is which is a little bit more good.

Cause, but anyway, I’m including them right now in the same box. And the worlds of neurodiversity. I think we’ve seen a lot, a lot of opposition in both, within quotes camps towards each other. And I feel like there really shouldn’t be. But today’s atmosphere is polar, and people are at loggerheads all the time. So so that’s how it is. But, um, we have been talking about plasticity, about neuro diversity about about the inherent competence in every individual. But would you be would you be where you are without functional or biomedicine? Or how where you want to put it? And how do diet and education intersect in your life.

Geralyn:

I marvel all the time about how this path with Lucas has probably saved my life, my Shawn, my husband, and I talk about it all the time, the things that we’ve learned on this path, I think that there is very little understanding, in general about the role of nutrition on learning. I mean, the stuff that is on the shelves for kids to eat is ridiculous. And in a typical person, our bodies we can take it in and take it in and function and grow and develop and it’s maybe the fourth or fifth decade of life before we get the well you know, you’re becoming insulin resistant, and you’re becoming a your cholesterol levels are off level starts shifting, because our body can only deal with it for so long. A child with Down Syndrome a chromosomal abnormality, a genetic material difference.

I can’t handle this load at all. So I tell the story on my blog, and all the time when Lucas was small. By the time he was 15 months old, he had had five upper respiratory infections. We had been to the emergency room for steroids and breathing treatments, five times, and a very good hospital, very well known. The doctor looked at me and said, Well, you know, this is common to kids with down syndrome, you’re probably looking at, you know, chronic upper respiratory infections.

And he gave me a script for whatever it was. And I went into, I took Lucas, we got into the car. And after I get done crying and cursing at everybody, I said, this is the last time we’re gonna walk through this door. I had already been reading and learning about this other idea. And I found a practitioner that was about 20 miles away from us.

And I called her from the car. And she said, You know what, bring him right over. And the first thing she impressed upon me was clear everything out of his died and just see what happens. It runs no risk to see what happens. It’s not a drug. It’s not a procedure. So we took everything out of his day, he literally just he was still being breast breastfed, which meant I took everything out of my diet as well.

And as we moved along a couple weeks, a couple months, he wasn’t getting sick. And at at one point in my blog, I think I even remembered the day, it seemed to me like he woke up. He had been we had been starting, you know, our reading program really early, and all these different interventions.

And all of a sudden, he just looked like he woke up tonight. And to your point, you can’t speak of educating a child without nutrition, environment, biochemistry, and it’s highly individualized. So I know if Lucas eat something with food dye his focus suffers. I know that if he has dairy, it’s not because of an allergy that you can test for. It’s because of his digestion and his metabolism, that he gets sick, he gets chronic infections.

And it’s not recognized even when you bring it up to doctors, they don’t want to believe you. They just say, Well, you know,

Vaish:

it’s the dark ages of food being believed as medicine. So even though there’s actually adequate research, and there’s this fantastic mainstream paper, which talks about food being a hormone, I think I mentioned it in my very first podcast, but how are you going to educate a child with the best of  Down Syndrome intentions?

Even if you believe in brain plasticity, that is always congested, or that has a raging East infection? How are you going to I mean, would you be able to learn if you were down with the flu and I made you learn, I don’t know advanced math or even regular man, how’s that going to happen? How are we assuming that, that this is not important work?

Geralyn:

It’s well, and I think too, you know, one of the things that I began when I started this is as an OT one of the theories that always guided practice was the model of human occupation.

And it’s this vast open system model, and the person is in the middle, and everything coming in, directly affects the throughput. And then you have your output that’s based on that. So you know, we’re talking about the five senses coming into the brain to organize the brain. But if my ear is constantly infected, and congested, and I can’t hear properly, that road is blocked, auditory processing is going to help, of course, and then if I’m not sleeping properly, and I’m exhausted, that road is blocked, the throughput is blocked, so you can’t tease it out. It isn’t a one size fits all, it’s an individual effort.

Vaish:

Yes. And the flip side of that, that I feel like I must mention is that eating the healthiest diet, but not paying attention to, to, to neurological processing, and to just basically assuming competence. And believing that your child can succeed is that the best nutrition isn’t going to take you there. So you have to, there needs to be activity in the brain for the brain to develop, for plasticity to happen for for changes to happen. The exercise has to be there, the work has to be there.

Geralyn:

So I think that the problem in across the board in traditional approaches is that we only judge what we can see, right, so if a child is nonverbal, they must not be able to understand what we’re teaching them. If a child is resistive, it must be a behavior. If a child can’t write, it must be something wrong with their hand. You know Down Syndrome, we tend to make all these judgments based on what we see when that’s rarely where the problem is.

Vaish:

Yeah. So we’ve had such an interesting conversation on Down Syndrome, and I’m sure it’s gonna be really challenging for you, if I had to ask you for your top three things that a parent could do. But do you think you could give our listeners, especially if you have a parent that is working with a child with either a neurological issue, or a learning disability, and usually, there’s an intersection between these two, what would be the top three things that you would advise them to do?

Geralyn:

Well, number one is easy. Number one is a no brainier. Nothing is possible, if you don’t believe it is you absolutely must 100% believe your child is capable of learning, growing and being healthy. That’s the bottom line of Down Syndrome. If you believe that, you will constantly look for answers on how to make it happen. And you will have a really hard time justifying them being in environments where that belief is not shared.

And it goes to your respecting of intelligence, respecting of intelligence respecting of potential respecting of them as a human. That’s number one.

Number two, is never to allow neuro neurological development to be confused with academic learning.

If a child can’t speak, it doesn’t mean they don’t have anything to say, it means that the wiring for speech is incomplete, it means the wiring for speech may be affected. But the thought process of putting the ideas and what needs to come out is there. And that can never be confused. It would be like saying a person in a wheelchair couldn’t be president, because that wheelchair somehow signifies they can’t think well enough or clear enough. It doesn’t make any sense.

The third thing that I would say is always to approach issues that come up in your child’s development from a strengths based approach.

I have many parents who will send me messages that they they just left an IEP meeting on A child with a chromosomal abnormality, a genetic material difference, or a meeting with their child’s team. And they’re so frustrated because there’s all these behaviors going on in school that they don’t see at home. And I feel like we really just need to step back. And we need to look at what the child is doing. Is it normal for where they are neuro developmentally and chances are it is a child who processes the world as a four year old is not going to sit through a fifth grade math class. They’re just not going to do it. And so we need to turn inclusion into the goal instead of the method. If they need to physically be in that building. Then we need to work with our teams, our therapists ourselves. College’s on a strength based approach, what can our child do? And how can that be used to teach them?

Vaish:

Excellent. Thank you, Jacqueline. You’re welcome. There’s just so much great information in this podcast. Now. Geralyn also has a Facebook group for parents have done plenty of children with Down syndrome called the Down syndrome action plan, and I believe it has 3000 or more members right now. And if, if her approach is something that you’re interested in, that could be something that you check out, but it’s actually really excited to hear that you’re working on a book, darling, do you want to share anything about this new exciting project of yours?

Geralyn:

You know, anybody who’s followed me knows that I’ve been talking about this book forever. And I just feel like things change at warp speed. And it’s never, it never feels complete. I am working on finishing it. And now education is going to be a component of it. Whereas formal education was not a component of it. In its first inception, it will be called redefining the reality of Down syndrome. And I’m hoping to have it out by this winter.

Vaish:

Awesome. I’m looking forward to it a lot. And maybe you’ll come back on the podcast to talk about your book when it’s ready.

Geralyn:

Oh, thank you.

Vaish:

Thank you for listening to  my episode 15. Accessing an Equal Education in Children with Down Syndrome, part-2 with Geralyn Spiesz. If you love this episode, as much as I did, or if you have any comments or questions that you want to close post, please move over to facebook.com/functionalnutritionforkids . Now the Facebook page just has the functional nutrition for kids like well, thanks so much for staying along for the ride. See you next Thursday with a brand new episode. Bye.