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Accessing an Equal Education in Children with Down Syndrome with Geralyn Spiesz

Geralyn Spiesz, a path-breaking thinker, leader and mother who also has a son with Trisomy 21 shares her unique thoughts and findings on teaching a child with Down Syndrome in this paradigm shifting episode. Particularly how a simple shift from focus on output to focus on input and processing, can result in a potentially equal education for the child. I am with you in this. This is where change starts happening. For  more details visit here.

 

Audio Transcription:

Vaish:

Welcome to functional nutrition and learning for kids. Today’s episode is one in a series about learning and so called Learning Disabilities in children with Down Syndrome. I have many issues with the term which I will explain later in this podcast. But for the purposes of our discussion, it’s a convenient umbrella term that covers the many issues we face with providing our children, a neurotypical education in a neurotypical system, I’m so honored to have Geralyn Spiesz as my guest today. Now, all my guests are special, but Geralyn is, if I may say so extra special.

When my son was born with Down syndrome, I spent the first two years of my life in semi denial pretending that this was not the case. And when I get up and take notice, I started hunting for someone or anyone was looking at this situation from an out of the box perspective, someone who’s not accepting the current narrative. And Jerilyn was this person. And I had a long conversation with her which set me on my path of basically expecting only the best for said, but also entering into the world of root cause medicine.

And, you know, if I may say, so root cause education. So huge welcome to Geralyn. And I’m so glad that you’re here today. And I’m so glad I got to speak to you nine years ago.

Geralyn Spiesz:

Thank you. Very, very honored to be here Vaish. Thank you.

Vaish:

Yeah. And so recently, we’ve been having this super intellectually stimulating conversation, like always, and in genuine, you said something that I will never forget that the brain is plastic, and the senses are the only way in. And so can we start with that? My my first question, you know, just kind of building up from here is that what is a learning disability? In your opinion? And what does it have to do with brain plasticity?

Geralyn Spiesz:

Well, first, let me say that I love the way that you introduced the term disability as this umbrella term, because I don’t like the term either. And I do believe in this conversation words matter. The term disability signals that those who are labeled with it are literally without ability. And when you believe that label the focus becomes, the focus is on what the person cannot do versus what they can. I look at learning differences as a variation in how the brain is organized. And if there’s been trauma or disorganization, due in my son’s case, to the Down syndrome, the trisomy 21, the effort to organize input to the brain must take priority.

And brain plasticity is the ability of the brain to grow and change and adapt to incoming information, all of these beautiful epigenetic things that we attempt to provide in those inroads, like you said, it was the institute’s for the achievement of human potential, who first said, where I first heard that there is only one way into the brain, and those are through the five senses. And I believe that to be true, and I think, so many times traditional education, will think in terms of disability as the output, they focus on what the output is. And they then focus their efforts to modify, change educate on the outputs.

They also think of it in terms of a timeline. So if your child hasn’t mastered something by a specific time, then they don’t believe further changes possible. I could not disagree with this more. As long as a person is living and breathing, the brain is capable of change. Absolutely. I love that.

Vaish:

Can you explain what you meant by saying that they see disability as an output?

Geralyn Spiesz:

A perfect example, you may not know I am an occupational therapist, and I can remember many years ago working in the school system, and one of the more common referrals I would get would be for handwriting. And so you know, you would look at a child and how they hold their pen, and how they press on their paper, and how the words look if they go up or down. And then you might add some things to help them maybe a little rubber grip on the end pencil, or you might give them an anchoring point so they know where to begin writing. And all of the interventions are focused on the output.

If I’m being honest, I had very little success with improving handwriting all those years. And it wasn’t until I began thinking, what I could change in the inroads that could impact handwriting and

They set me on the path of proprioception, a child needs appropriate proprioception in order to press appropriately on the paper, they need appropriate visual skills. They need depth perception, they need visual closure, they need all of these beautiful integrative visual skills in order to write on the paper. And that’s just the tip of the iceberg, there’s a million things that you can focus on in the input to see a change in the output. And that’s, you know, just one of many examples I can think of,

Vaish:

I like that language a lot because you could potentially stretch that input to diet, correct?

Geralyn Spiesz:

Absolutely, absolutely. And, um, you know, I, I use the term epigenetic, and that was one of the first things that I had read when I was looking at an alternative mindset. And I read it analogy that really struck home. If you take a classic story, like Gone with the Wind, and you sit in a comfortable chair, with that book wrapped up with a blanket, you are having a very different experience than if you’re reading it on your tablet on the subway.

Genetics is the text of the story, epigenetics is our experience of that story. And it never left me the power that we have. When we are expecting anything expecting to learn, expecting development expecting brain change, the focus always has to be on how it’s coming in. The focus can’t be on what’s coming out.

Vaish:

Yes, absolutely. I couldn’t agree with you more. So thank you, that was like two or three paradigm-shifting analogies. So I love genetics, epigenetics, I don’t know where you get these analogies. They’re so good. I mean,, they helped me refine my thinking process so much. So this is really good. I love the book. I’m gonna use that.

Geralyn Spiesz:

I honestly wish I could read that I can’t take credit for it. But you know, you read so many things. And you, you extrapolate so many things to fit your path that I honestly can’t remember where I read it from. So if the author is out there listening to this, please know that it was life-changing for us.

Vaish:

Yes. So you were one of the early people who rejected this glass ceiling that everybody puts on our children with Down syndrome, society, doctors, educators, therapists, and so on. So tell us more about what you had to do? Because you have you have so many people falling in your path right now. But what did you have to do to push through the ceiling? And I’m going to add on another question, is it your opinion that is, is real in any way because that seems to be an assumption that just goes along with the diagnosis.

Geralyn Spiesz:

The ceiling is very real, it’s very real. In fact, if I’m being honest, we have not pushed through it at all. We have it. In fact, every single effort we make is pushing up against this ceiling. I’m raising a child with trisomy 21, specifically, because that is our path.

You run into ceilings in every area of your life, there is a ceiling for what we’re to expect health-wise, there’s a ceiling for what we are to expect education-wise, there is a ceiling for what we can expect socially. And when you have the rare person still today, the rare person who pushes through that ceiling and makes it they’re still discountenanced they are still discounted as high functioning. Yes, I’ll one of it is not seen as an example of what we should be aspiring to.

Vaish:

Absolutely. And I can attest that in my son’s case, and I don’t know what it was but perhaps his being nonverbal and having limited to zero motor skills helped us in pushing through that ceiling but it also helped in people accepting it a little bit more rather than if he’d been a conventional-looking within quotes kid with trisomy 21. And then now what we hear when the only ceiling he has pushed through if any would be academic, but and help but like a lot of the other kids have done that too.

It’s perhaps because he has autism, perhaps there’s something different about it. There are always so many excuses that are put to make sure that we can really extrapolate this to other kids.

Geralyn Spiesz:

Absolutely 100%. And the irony to all of it is traditional education. And more specifically, even traditional medicine is very fond of this idea that there is going to be a one-size-fits-all Down syndrome is Down syndrome. And if there were ever a population of people for which that is less true, I don’t know.

When you talk about someone having extra genetic material in every cell and every system of their body, there can never be a one-size-fits-all. In fact, I believe that there have never been two people in the history of the world with down syndrome with identical metabolic learning developmental profiles, it just is impossible. That makes sense. Because if you were to put all the kids with down syndrome, all the people with Down syndrome in a box, you should equally put all the people without Down syndrome in a box because they have within quotes the same genetic material, we have absolutely 23, you know, we have two copies of each chromosome. Right? Exactly. We should all be the same.

Vaish:

Exactly. And we’re not. So I don’t know how that suddenly becomes okay.

You shifting gears a little bit, you are often a proponent, you have been a proponent of individualized education, and you homeschool your son successfully for many years. And I think that you and I at least have often seen that with such varied sensory needs of input. A crowded school may not be the best situation or may not be able to provide specific education to every child-specific appropriate education to every child.

What, in your opinion, is the correlation between conventional schooling the way it is dispensed today and the huge increase in learning disability diagnosis.

Geralyn Spiesz:

I really think that looking at history tells us a story. So the original education for handicapped children Act was passed in 1975. And until they appoint children with challenges to their development, especially a visible one, like trisomy 21, Down syndrome, were routinely institutionalized. The parents who chose to keep their children at home certainly had a better environment from a love perspective. But certainly, there were no resources for these people to teach their children to educate their children. And so many people with Down syndrome throughout the history of our country until that point were viewed as being unethical.

In 1975, administrators, teachers, and parents in society, were now told that these children whom they had never seen before, outside of an institution, never encountered in a classroom, now have the right to be in this classroom alongside their peers. And as with most struggles, for civil rights, you can pass a law. But getting compliance and changing minds is a completely different story. And so in order for schools to comply with the law, they had to come up with a way to prove they were doing this correctly. And the easiest way to do it was to latch on to this idea of inclusion.

In my opinion, and I’ll talk a little bit about it in a second. Inclusion is a three-legged stool. It is physical inclusion, intellectual inclusion, and social inclusion.

But unfortunately, the schools focused on physical inclusion. Yes, these children are coming through our doors. Yes, they are sitting in our seats. And yes, we are paying attention to them. And these are the things we can prove.

So what ends up happening for our children, most specifically, they start off this process in pre-K, generally three or four years of age. Our children are generally processing and organizing their brains to understand and act on their world as three-year-olds. This does not say anything of any special any other special cases. It doesn’t matter whether the verbal or nonverbal are in a wheelchair, in their neurological organization. They are processing their words.

And they are acting on their world as a three-year-old, and everybody else in their class is doing the same thing. They’re all three, they’re included in all three phases time we get to first grade. The neurotypical peers in the classroom, are now processing and acting on their world as a seven-year-old. Our children, if they have lacked the intensive organization, neuro organizational work are still operating as a three-year-old.

And you begin to see the legs of the stool falling off, you’re going to lose your social inclusion because they’re going to be seen as a baby in their classroom, they’re going to be treated as though they were a little brother in the classroom. It says nothing of acceptance, the students, I’m sure accept our children, and they’re happy they’re there, but they see them as different. So now you’ve lost social inclusion.

By the time we get to third grade, when you now have things coming at them academically, like inferencing, and reading, and writing for expression, and trying to understand long division and multiplication, you see the intellectual leg fall off the stool because school is focused on what they need to do to keep that student in that room. And it becomes focused on what our children can’t do.

So if I put a child, who sees their world and acts on their world as a three-year-old, and I put them in a third-grade classroom, that child is going to be restless and not want to sit in their seat. And instead of seeing it from a strengths-based approach, saying, Okay, this child needs an active learning style, how can we teach them our math concept in an active method, the focus becomes how do we get our child to sit in a seat, and it becomes a behavioral intervention, that then feeds into frustration on the child’s part.

Before you know it, middle school rolls around, and you might or might not know, this is where I am in my current journey. And whether or not our children are capable of intellectually keeping up, the discussion begins, they would be better off in a smaller classroom, in the 12, one, one classroom, and the last leg of the stool falls off and they’re not physically included either.

Vaish:

absolutely nailed a child. And that’s exactly what I’ve seen happen and over and over again. And I was shocked to see the difference in my son’s and he wasn’t even included. But even in the segregated classroom the difference between primary and middle school, but you just put this so well, I love the concept of the three-legged stool, what you said about processing issues. So the clarification is that it’s not that you’re saying that the child is incapable of intellectual progress or anything like that the child may be completely capable of that. But it comes back to the first point that we made right that the brain is plastic, and the senses are the only way in.

Geralyn Spiesz:

And so if you have a child, whose 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 have you thought that this podcast has been barrier-breaking with respect to what you know about education what you know about learning whether that be for a child with Down syndrome or for a child with any neurological difference then I am with you? Listening to Geralyn speak has been one of the most paradigm-shifting experiences of my life. And I can’t wait until you meet us again next week for part two of this explosive podcast.