78 Why Biomedical Intervention does not work for Autism

78 Why Biomedical Intervention does not work for Autism

In this episode, I talk about 3 reasons why Biomedical Intervention may not work for your child with Autism or Down Syndrome, and how to find the traps that hold your child back.

And why you might want to give it a fair chance anyway.

If you want to find out more about what gut health actually means and 5 strategies that can help you get started on the path to gut health for your child with Down Syndrome or Autism, check out my free ebook at www.functionalnutritionforkids.com/guthealth

 

 

Audio Transcription: 

Hi everyone, welcome to functional nutrition and learning for kids. Today we’re going to explore three reasons why people tried biomedical intervention for their kid with autism or Down syndrome and it doesn’t work. I’m your host Weis chemistry and chemistry and math teacher, and functional nutrition coach. Okay, so I’m also mom to a point with down syndrome and autism said who happens to be nonspeaking was just a few years ago that I remember feeling so frustrated that I was at my wit’s end at my son’s dysregulation, his fatigue, his lack of motivation, and complete disinterested in anything that I offered. Sit and I have since travelled through 1000s of lessons learned about the gut, the brain, and the extreme importance of assuming intelligence.

He now lives a motivated, regulated and extremely ambitious life. Sid said recently and I quote, The moment I stopped eating and flaming foods was the moment I could live in harmony again. I’m going to repeat that because I think it’s profound. The moment I stopped eating and flaming foods was the moment I could live in harmony again. I present this podcast functional nutrition and learning for kids in order to bring to you the low and the high hanging fruit that have changed our lives and can make a huge difference in yours. If you already know you want to pursue Food and Nutrition related approaches to support your child, or yourself with symptoms of ADHD, like focus, hyperactivity, or mood swings, please head over to functional nutrition for kids.com slash roadmap again, that’s www dot functional nutrition for kids.com slash roadmap aro ADM AP, enrollment in this course that I call roadmap to attention and regulation ends on Wednesday, October 13, at 11pm PST. So you’re a parent who has tried so called biomed intervention or biomedical intervention for your child with autism, and things haven’t turned out the way you desired. Or you’re a parent who thinks this is alternative fluff.

Today we’re going to talk about three reasons why we don’t see transformational healing in some kids that go through biomed. Now, technically, biomed should be called functional medicine these days. Now, if you’re wondering what that means, according to my teacher, Andrea Nakayama functional medicine, is the practice of healthcare that focuses on restoring the optimum function of the body and its organ systems. It does so by recognizing the relationships between all body systems, along with the environmental factors and exposures that impact them. And by seeing the individual as a whole. In other words, your functional practitioner recognizes that constipation. To put it famously is not a middle x deficiency, and may be a symptom of gut inflammation.

This gut inflammation itself may be because of the food that your child eats, or it may be due to a traumatic brain injury or both. It may be due to compromise the dysfunctional immune system, which itself may be due to a long lasting fungal infection, perhaps, which could be because of compromised digestion again, talk about a vicious cycle right? Which comes first, do they all come together, your doctor may choose to focus on gut health first, since gut health. And when we say cartel, we’re talking about digestion, inflammation, gut infection, and so on. All of this comes under the category of gut health, such a generic term right?

When we say gut health, it often is so generic that it means nothing to most people other than eating probiotics. It’s an extremely vast area. biomedical intervention for autism traditionally revolves around major root causes of discomfort and dysfunction for the child. These could be gut issues, mitochondrial dysfunction, infection, and detoxification. All of these are important when done in the right order, and when including the child in the journey, in other words, when done with your child, and not to your child. The research says that 40 to 70%. Now the number estimates vary according to the paper I’ve read, but 40 to 70% of kids with autism diagnoses have gi gastrointestinal complaints, again, commonly called gut issues. These can range from constipation, reflux, bloating, diarrhea, gut dysbiosis. In other words, overgrowth of bad bugs or pathogenic bacteria in our digestive tract, right. And this is at least twice the number of neurotypical kids that present with gi symptoms. I present this data as an argument to working on gut health for all kids. I know this is about when biomed doesn’t work. I’m actually trying to make the argument that it can be necessary.

There is an increasing Bank of studies that are showing that diets that remove inflammatory foods like gluten and dairy, or diet setting reduce the refined carbohydrate burden that like sad or ketogenic can also help reduce autism associated symptoms like Maybe it could help in reducing gi symptoms and improvement in behavior.

Now why then do some children not show improvement when they’re in a biomed protocol? I know a number of parents have stopped this protocol midway because they saw no changes and the protocol level following was either too expensive or too hard to follow. So we’re going to review three such pitfalls of the biomed protocol, and why it may not work for your child. Right? Okay, number one, you go to a diet or another intervention before or without balancing blood sugar. Diet is important, but often with the fixation on a gluten free and dairy free diet. But I’ve often seen as a replacement of gluten with equally or more refined flours like tapioca starch, rice flour, with various gums to replace the gluten and returns of added sugar, for some reason to replace the taste, I suppose, or to compensate for the taste somehow.

Now blood sugar is often called the first domino in hormonal issues because it can impact so many hormones, cortisol, for example, sex hormones, and so on. But even in kids blood sugar is the first domino when you’re considering moods, depression, anxiety or hyperactivity.

A gluten free diet is actually more blood sugar disrupting because of the extensive matrix of refined carbs and gums used to displace and replace gluten. Therefore, if you’re replacing gluten, which would be Whole Foods, we I generally recommend sourcing from traditions that don’t use a ton of gluten for recipes. I’m South Indian, and I love South Indian diets because it’s very naturally gluten free for the most part. And but even there, you want to keep it whole food focused. For example, using keen wine instead of white rice is a very unpopular, but extremely effective blood sugar supporting swap. Okay, second trap. The second trap is that you’re not 100% gluten free, right? I know it’s counterintuitive when you consider the first point I said, Don’t overdo the gluten free substitutes. But here’s a personal statistic. It’s not research, it’s just my experience.

Every autistic child that I’ve seen that has successfully overcome dysregulation long term. And not that I say overcome dysregulation. I’m not talking about kids that are naturally not dysregulated. From the beginning. Every child that I’ve seen that is overcome, has used dietary approaches, and I’d been 100% has been or had been 100% gluten free for most of their lives. Many of them experienced a return in dysregulation or aggression or spiciness or hyperactivity, when gluten was reintroduced, and it takes time for these symptoms to come. So it’s not an immediate correlation or causation that you can extrapolate. And usually it goes beyond a gluten free diet or Whole Foods nourishing diet that is effective. Okay. Now, what about the third trap? This trap is huge. I have mentioned this many times, sometimes there are some neurological issues that either cannot be fixed or should not be fixed.

Okay, this is where we’re talking about neurodiversity. Not everything needs fixing. Consider whether going biomed you are performing biomed on your child, or whether this is a respectful dance. Of course, as a parent, it is our job to set boundaries and to feed our kids what we think is best for them. But when done with a constant refrain of let me fix my child, this will not work. Breaking the will and self esteem of a child cannot and will not result in growth. Whether this is repetitive behavioral therapy for 40 hours a week, or whether it’s using a technique to fix within quotes a child, right. Now that you know these traps, you can stay out of them. And as you stay out of them, you can drop gut health, we are meant to heal the gut to live and digest and eat comfortably. And to celebrate neurodiversity. All of these right? It’s not one or the other. In my course roadmap to attention and regulation, which I love calling role. I think of taking the person through full focus from food through respect into regulation and using science to find stability.

You can join me at www dot functional nutrition for kids.com slash roadmap. doors closed October 13. And that is it for now. I hope you found the pitfall that was bothering you and you find a way to get through the pitfall and work through biomed because it can be an extremely effective source of reducing discomfort in China. Okay, see you next week on functional nutrition and learning for kids. Until then I’m your host Rajesh bye

77 How to Navigate a Special Diet with Loren Edelson

77 How to Navigate a Special Diet with Loren Edelson

My colleague Loren Edelson, Functional Nutrition Pracitioner, mother and Canoe Instructor (I love her multi-passionate life) has unique expertise on navigating the challenges of an anti-inflammatory diet socially.

Here she shares her story – her struggles, and the tools she uses to navigate stressful social situations.

Loren blogs about her experiences – you can follow her HERE.
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.In other news, if you are interested in learning more about how sugar can be part of your child’s diet, even if they struggle with attention, join my new FREE workshop next week. 

Roadmap to Attention and Regulation – my signature 5 week course – also launches in two weeks.

 

 

Audio Transcription: 

Now today’s guest Lauren Adelson is an expert at navigating special diets and juggling many diverse interests. This is a really fun conversation for those of us that still struggle in social situations. Lauren, and I fully believe in the idea of food as medicine. And it is with this thought that I’m also sharing a free workshop on sugar and kids in the next week. To register for this workshop to understand how sugar can be part of a diet. Even for a kid with low attention. Please visit functional nutrition for kids.com slash workshop. Again, that’s functional nutrition for kids.com slash workshop. This is a free workshop and there are three days October 5 sixth and 12 for which you can register on this website.

Onward my friend. I’m really excited to have my friend and fellow functional nutrition practitioner Lauren edelson here today, before becoming a functional nutrition and lifestyle practitioner, mother and co instructor in that not necessarily in that order. Lauren was in a different track. After graduating from college, she worked for the Japan Times in Tokyo, where she wrote articles on theater, food and lifestyle. While living in Japan. She’s also written a guide to restaurants in Tokyo for photos travel guide and contributed stories for NHK. Radio Lauren, I did not know this that is super awesome. After receiving her doctorate, she published several scholarly articles on theater and taught at City College cu NY. When her son was diagnosed with autism in 2009. She began investigating nutritional interventions that could help her family thrive, a mission that led her to the functional nutrition Alliance from Chelsea to certification in 2019.

Hi everyone, today we explore how to navigate a least restrictive diet. I invite chemistry and functional nutrition consultant and science educator as well to avoid for Down syndrome and autism was also nonspeaking. That was just a few years ago that I felt helpless at SIDS dysregulation, severe gut issues, difficulty with communication, extreme lethargy, and disinterest sit and I have since traveled through 1000s of lessons learned about the gut, the brain, and the super duper importance of assuming intelligence. As I said, he is now a happy point filled with what he calls gory ambition. Now these lessons that we learned have spilled over outside my podcast and as many requested me to formalize this information about addressing focus and regulation, in other words, emotional stability in their kids. Now this is now formalized into a course called roadmap to attention and regulation. And you can find it at WWW dot functional nutrition for kids.com slash roadmap. enrollment is open for another 14 days only.

Prior to the pandemic, she founded her coaching practice walk the talk in which she offered free weekly walks in New York city parks that focused on bite sized health related topics. While building community. She has now moved to Rockland County, New York to be closer to the mountains and the lakes where she loves to paddle. She is available for one on one or small group coaching while she continues to write about health, the outdoors and parenting on a blog that is titled given the givens. So that’s g i v n given the givens. Welcome Lauren, I’m so excited to have you here. Especially because you’re one of the few people that I know that has successfully navigated a gluten free diet and anti inflammatory diet for such a long time with both yourself and your son as I know it. So welcome to this podcast.

Thank you. Bye. It’s great to be here. And let me just say work in progress. Yes, it always is. And as we get started navigating both the challenges and the not so challenges of of any restrictive diet, can you just give us a brief insight into what made you take on a diet especially for a long term?

Sure. So um, well, a couple things. It was first my son who was diagnosed with autism when he was two years old. It was actually my husband who came to me and said, You know what, I think we need to start this thing called a gluten free casein free diet. And in my postpartum Hayes, I just given birth to my to my second child who is now 12 and a half. I said sure, because I was always the one in the family who was eager to cook and experiment with more healthful cooking. So I was kind of surprised when my husband offered this up as a suggestion, and I took it and ran with it. And we actually saw incredibly positive changes in just a few weeks.

Now, let me add that we did a number of things in those first few weeks, months, years after Julian was diagnosed. So it wasn’t just changes in his diet and as a result, our diet, but it was also a lot of intensive therapy as well. You know, this worked and I’ve written about this for you else. But a number of years later, we ended up re introducing a lot of foods including whole grains. And we can talk about what that did for my social health and well being because there was a time when it felt that not only was our diet incredibly restrictive, but that socializing had become a thing of the past because the diet really inhibited us being more social, I felt like we were sort of living in a, in a bubble.

What Remember, we’re just coming out of yet another bubble COVID. So we’ve had 14 months of really sheltering in place not socializing. For my son’s school, he was going with a packed lunch every day, and not particularly interested in the cafeteria food. Like, my, my youngest daughter was very excited to have a school lunch. So um, you know, I’ve had to look at each case and each child very, very differently. But I will say, for me, I am I was diagnosed with hashimotos thyroiditis in 2013. And it was at a time when we had really eased up on Julian’s restrictions and had gone back to eating I think, some some gluten, let me also just back up and say that what’s most important when I think about, say, quote, a family diet, that it’s nutrient dense, I prefer to think about it, you know, I don’t I don’t even think of us as being on a diet. I just think of us having Whole Foods and really nutrient dense.

Let me pause there for a minute, because I think you said something really important because a lot of the, you know, as we’re talking and the audience is probably not primarily but sufficiently of parents of children that are not yet on diets and that are trying to find ways perhaps that will help them that do not involve food restrictions. So I think this is important to see what is the why what are the benefits that you get from simple food restrictions, why you might sometimes want to go all the way but you don’t always have to go all the way you were on a more restrictive diet and then East out of the restrictions, but but also that we’re not looking at restrictions for the sake of restrictions, a lot of times restrictions bring with them nutrient density, and it’s hard to bring that nutrient density is when we end up eating foods like wheat and dairy would that is that your experience too?

Absolutely. I you know, it was interesting. I was part of a conversation last week, where there were a group of us all parents of special needs children. And the question was posed, do we need anything beyond ordinary good nutrition for in raising a child with special needs? And I found that to be such a loaded question because when you think about first of all what is ordinary what is ordinary good these days, you know, we’re talking about most you know, most people out there are still on a sad Standard American Diet where processed foods comprise so much of the diet and in some ways it’s almost like we need a system a template, I think more than a diet I like to think of it as a template for eating eating well because if it’s just sort of ordinary anything goes then I think very quickly, things can get out of whack. And so it’s it’s nice, I think it’s very helpful in some ways to have some restrictions in some ways that makes things a little bit easier knowing that in my in my family’s case, animal protein is on the table, not all animal protein because we have further restrictions in that regard.

We keep kosher home, so there’s no no pork, but but beef, chicken, lamb, as well as eggs, and as well as fish, all different kinds of fish and and then vegetables and this is the first year that we have grown a garden and now we are dining on eggplant, fresh tomatoes from the garden peppers as well. Not to mention basil so every week it’s it’s a new pesto nine thanks to one of our colleagues. I’m using a dandelion in the pesto. So again, really trying to make things extra tasty, but also really powerful as far as the niche grants. So um so that’s really the, the starting point. And I think when we talk about restriction, let’s begin with really good clean Whole Foods and then see what else you know where is there some some some wiggle room. Because I think the key that sometimes we forget is that we want a very diet, we want to expand the dietary repertoire as much as possible and not stay in that rather myopic place of restriction.

I know for myself, there was a time that I could not eat any, any nuts. They were just so constipating. And as soon as I figured that out, but I could not eat almonds. And this was after going nuts over almonds because there was a time that we were on something called the specific carbohydrate diet and goes crazy about well, everything is almond flour, and it’s it’s delicious. And I was substituting flour i was i was using almond flour and all my my baked goods. And interestingly, Julian never gravitated towards this, I was the one and everybody in my family, everybody else enjoyed those. But it just became very clear to me like could no longer eat and almond to this. And to this day, I will eat other nuts, but I still will avoid almonds and almond milk and almond flour as well. But I have successfully reintroduced other kinds of nuts. But this was after years of avoiding them.

So, I think we want to be really careful when we talk about what is ordinary nutrition and really get quite granular as to what that is. And then see how can we expand the diet? Um, are we never eating from a bag of chips? No, there’s some times where we’re eating chips, and we’re eating other, you know, other store bought foods, but we’re being really careful to read labels. And that is something I think it’s a skill that all my kids are capable of. And you’re talking about reading ingredient labels and making sure that there’s care that we know what’s going what’s going into the foods.

Yes, yes. And I think that’s where we can really empower our kids. So they’re, they’re aware,
let’s back up to the you know, to the why because we’re still talking to probably people that haven’t aren’t necessarily convinced that this this dietary regime is going to work for them. So what did you see when you change your diet when you was the first time you went into a specific carbohydrate diet or were you already on a gluten free diet before that, so it was first it was first eliminating the gluten, the gluten, the protein found in wheat and as well as casing the protein found in in in milk and dairy products.

So um, yeah, that was our starting point. And we saw Julian just totally shift be attentive, real much more focused and engaged. And again, that was with a lot of work with with therapists as well. So that was very exciting to see. Then we went I about a year later another step further and removed grains. And frankly, that was maybe not as successful we saw him really become quite tired, depleted and energy. And so we then began to at that point, also, I mean, we definitely did it for perhaps too long, a couple months, and at that and the specific carbohydrate diet does permit certain dairy to remember at that point, I was making all of our yogurt in our dehydrator. It’s a 24 hour fermentation process. And there just became a point where I was exhausted and I like you know, other parents who do these diets I you know, I just felt burnt out and I felt socially isolated as well.

This was the diagnosis of hashimotos. Correct? Yes. It wasn’t. So it was at that point that I made the decision to go gluten free for myself. And then a couple of months later, I thought this a couple months later, you know what, Julian at that point, I had taken him for some allergy testing. He tested positive for gluten. And at that point, I decided, you know what, I’m the one who does the cooking in this family primarily, and we’re going to eat the way I eat. And slowly because I’m more of a questioner to use Gretchen Reubens terminology, I’m you know, at that point, I very slowly had cut out dairy from my diet, I, I decided that that was how everybody in the family was going to eat, it was super easy to do them because at that point, my son Julian, let’s see he was seven at the time. And my other daughter was was five so I could still really micromanage their diets at home, so I didn’t get any pushback, then.

Frankly, I felt so much better. Um, you know, fast forwarding joint, you know, and he was, Julian, as long as he has say in what he wants to eat, he is really happy to to get the food that that I that I prepared. So not a lot of pushback from him either. Early on, as I’ve written in my blog, that has not been the case these days, there’s been some pushback at home as you know, I think of it as quite developmentally appropriate, I think you know, that he’s noticing what other kids eat and he wants some of that too. So I welcome that.

And that is normal at some stage during your diet, it’s either going to be before early or it’s going to be after the the opposition or the rebellion against the diet is, like you said could be very developmentally appropriate. And if it happens really early, I mean that that’s also pretty normal because most people don’t want to go off gluten. There’s a whole list of reasons that we’ve discussed earlier in this podcast. But I just I just want to back up to some of the points you mentioned. And then we’ll talk about how you navigate What are your tips for navigating a will just stick with a gluten free and a casein free diet?

One of the things I want to mention is that Lauren like many people started with a gfcf diet but then went to more restrictive diet which for some people may be necessary but for some people is not so more restriction isn’t more of anything isn’t always better right? So I think sometimes when we get onto the and that this has been true for me too when I’ve gotten onto the diet bandwagon I felt like let’s remove this let’s remove this and see what happens and that is is not always the answer.

We actually jumped into a gap style the our very first type was a gap style. And obviously because it gaps died does remove a lot of inflammatory foods, there was initial improvement, but there was a late reply to and it was obvious that be six months in the gaps diet was definitely for too long for sale. And then we came back to a baseline what we call a baseline anti inflammatory diet, which is removing the three foods that he that show up in his blood testing for food sensitivities, not allergies, gluten, dairy and eggs. And he’s as long as we don’t eat those foods sit is pretty stable. So I have not felt the need for further restrictions. I just want to make that make that point once more that we’re not trying to restrict restrict and restrict. We’re trying to find one baseline that works the best for your child that may be sad for for you. But for more for a lot of people. It’s usually at least a gluten free casein free diet when you’re dealing with autoimmunity when you’re dealing with neuro inflammatory symptoms associated with autism pan’s pandas and so on.

Sure, and then it’s all about re introducing and watching very carefully and tracking, tracking and assessing and going from from there. And that’s, that can be tricky, because, you know, again, something else that I’ve written about we want, we want to make our reintroductions intentional and plan for them. And yes, you know, that hasn’t always gone so smoothly for for my household so I just, you know, I want to I want to raise that as well, you know, as, as a functional nutrition and lifestyle practitioner, we know what to do, again, when you’re in the trenches.

You know, as a mom, things don’t always go so smoothly, and that’s okay, too. So we backup and we start over for the long haul and it’s not always going to be the smooth and we can always and we’re going to do too much at times and too little at other times and it’s fine Let’s talk about what you wrote in your, in your latest blog, which is navigating social situations. Of all the things that people get scared about when we mentioned the built in free diet to parents, there are a few reasons that it’s scary.

The first thing is what will my child eat. And we won’t get into that here because there’s actually a ton of stuff a lot of it has to do with the addiction brought about by gluten, so that there’s a certain you know, you can either go cold turkey or change it gradually.  But the second big objection is social situations, especially if the child is older, social situations for the child social situations, but with the parents, friends, potlucks, your friends, kids, friends, General potlucks of other groups that you belong to, I can’t think of anything else cool.

Maybe I think sporting events is a good deal, especially when your child is on a team. There’s all sorts Oh, yeah, functions. So basically, we are parts of teams, because we want to belong to society. We want to be part of a community, but then we’re on this diet that is excluding us from that very community. So we’re being pulled in two directions. How do you deal with that, Lauren?

And now it’s super it’s it’s, it’s super tough. I mean, that’s why I wrote the article, because I wanted to write advice, you know, advice, yes, advice to no clients, but advice to myself. So as I wrote, I want to accept that invitation. I’m a fairly outgoing person. And when I get the invitation, I get really excited. My first instinct is usually Yes, I want to go and then my second thought is, Oh, no, what what, you know, what are we going to eat. And again, for me, that’s not a big deal. Because I can feed myself beforehand, I’ll make a make a dish that will work for me, especially with friends, I’ll coordinate in advance and plan the menu. But you know, the the case that I was thinking of is at our canoe camp, and it turns out that the organizer is a friend of mine.

But um, you know, there’s going to be a lot of dishes there that my kids might want to eat, that I would prefer that they avoid. So how am I going to do this? We’re actually having our first potluck at our paddling camp next, next Sunday. So thanks to the article, thanks to you know, you inviting me here. I’ve put a lot of thought into this. And I’d say more than in past years, I’ve actually turned to my kids and really asked, what is it that they want? You know, how can we brainstorm and you know, work together so that they’re going to be preparing at least one dish that they’re going to be excited about? Because in the past, I think I’ve thought more along the lines of, you know, what’s a typical potluck dish that I could bring. So this is this, for example, is for brunch. So immediately, what comes to mind is, say, bringing a frittata, and a fruit salad, that would just work beautifully.

For me. Not the case for Julian. That’s just not of interest. So it’s beyond the food restriction. Now it’s what kind of foods like, just because we’re food restricted, doesn’t mean we’re ready to eat anything. Right? So we still have our food interests. Yes. Well, he might, and he might want, you know, to eat foods there. And I hope that there will be other, you know, other dishes that he can eat, because it’s not just about, you know, my cooking all the time. I mean, he is kind of particular. I mean, I, you know, I maybe I should take it as a compliment. But, yeah, look, it’s like, you want your child not only to enjoy what’s available at home, but but elsewhere.

So you prepare meals, and then you ask your children for choices and for their preferences. And then but you’re still going to be in a position where you’re there and there is a predominant amount of food that you cannot eat. Possibly, sure, yeah. So you know, I look I mean, they know, you know, to certain, to some extent, they really know what the parameters are. They know what the rules are, and in some ways, you know, they’ve embraced them and I’ve heard from other parents even I’m, you know, about my daughter, say, of, you know, what, tomorrow actually told me that she doesn’t eat this. And even their teacher at school for the parent teacher conference called me and said, you know, your girl told me that she doesn’t eat refined sugar. So in some ways, they are eager to share. Um, so I think I think there’s just been a lot of conversations at home that they do take with them when they leave the home.

That doesn’t always mean that they’re happy about it. With my daughters, there was a lot of pushback at some point at one point and I’ve because their situation is different from Julian’s and I should say for joining, it’s not just it’s not just the autism he, his his bioroid antibodies are elevated, which is just one sign, possible sign of, of thyroid dysfunction. So again, it’s not a full on diagnosed condition, but we know as functionally trained nutrition practitioners, we know that that is a sign of possible and it’s it’s and we know that there is a high, high probability of gluten You know, they’re in what is called molecular mimicry that in an immune attack to gluten, if you’re sensitive to gluten, other tissues can be attacked to in autoimmunity.

So, and often in situations with autoimmunity, we at least gluten usually tends to be eliminated So, so I think that I wonder A lot of you know, from from a recipe perspective there, there are tons of recipes out there, it’s completely possible to go into potlucks with I mean there’s not that many foods that cannot be recreated I think that how if you’ve not been gluten free it might seem daunting, but I don’t know if a single thing that you can’t make without gluten right? I mean I don’t think that is a barrier is it?

No of course not. Of course not. And I mean Julian is very excited to bring a sushi dish Yeah, not necessarily sushi rolls, but more of say a chirashi sushi and in a in a bowl, sort of a deconstructed sushi roll. He actually makes sushi rolls and he’s excited to share that so that is what he would like to bring um but then I do think for a potluck yeah there might be a you know if you know that spaghetti is going to be served and that your child likes spaghetti it might g well to bring spaghetti I remember for years attending the camp potluck and never bringing always bringing something like roast chicken and then there’d be spaghetti their pasta there and my kids wanted the pasta and I finally figured out oh I should bring some gluten free pasta.

Yeah, just to have it It wouldn’t it didn’t occur to me as you know something that I want to eat. But then I saw that that was served and that my kids wanted it so a potluck is really a good especially if you can talk to the organizer ahead of time and find out what’s going to be there that is a good time to bring if you know if you are say gluten free to bring a gluten free pasta.

I mean I also just want to say that after writing the column one one reader responded I as a mother of three kids I think all of them were on a gluten free diet all you know all of them had celiac disease, one of them had a nut allergy, so gluten free and not free recipes. And she said they were so delicious that everybody wants to eat them. So you know, not just her kids. So the thing is, you know, some of these recipes, you can bring something that is going to be delicious, not just for your own family, but that other people are going to.

Yes, absolutely. And we’ve come a long way in the world of gluten free cooking it’s very different from what it used to be 10 or 15 years ago even and it’s a sad ingest in terms of the number of recipes available online and in terms of the complexity of them and of course our entire cuisines that are gluten free so that’s another thing either you’re recreating a pasta dish but it also really helps for me so I’m from South India and almost 90 or more percent of South Indian cooking is almost entirely gluten free and that’s true for a lot of East Asian cooking as well.

So a decent amount maybe not all of it but a decent amount of East Asian cooking but so we will there obviously some there are some challenges in socialization I think this this idea of personalities is really good to explore in another podcast because there are some people that simply don’t care like me but you know that it’s not important to me what the social perception or or my acceptance in different communities is so because I eat what I eat and for other people it makes a lot of difference so that definitely is a variable but there are also I feel like the challenges of a gluten free diet are sometimes hyped up beyond what they should be like removing one food shouldn’t be such a big deal in our society and yet it is so what are what are the what are the nice things about a gluten free diet or the other way to ask this question would be that what are the things that you think are overblown in in popular perception?

I mean you know all the gluten free processed food on the market for sure. You know I am excuse me um, you know foods now that are labeled organic, you got to look beyond the label because there’s so much junk I mean all of the processed foods by saying you don’t need to go to that that section of the market in order to be gluten free. You don’t need to go by that gluten free pancake mix with rice starch and fat don’t do that.

I’d say I think Don’t you know don’t do all of my mistakes. I started wanting to trying to be A lot and go for the cookies and you know and the gluten free cookies and cakes I think I spent that first year of joines diagnosis learning from all the amazing therapists who were in our life and baking trying to come up with all of these baked goods and I was never much of a baker before but all of a sudden there I was with with different gluten free ingredients and Julian was never never interested and I remember at the time he was at a therapeutic nursery school and I’d often bring in all of my rejected dishes for everybody else to enjoy but I think that is not a good starting starting point.

The great starting point is it with a bowl of chicken soup or if you’re I and I do believe in the healing powers of some meat protein but you know are a part of of vegetable soup I you know start there with the nutrient rich dishes that’s where the real foods and start with Whole Foods and start with foods that don’t you don’t have to engineer into being gluten free?

Yes, yeah so start start with the garden I see my kids get so excited about that going out and picking a cucumber and then the instant gratification of of eating it with a little bit of sea salt. That’s you know, that’s where you know that I think is a great starting point or going to the farmers market and of course even at the farmers market there’s a lot I mean, at least last time I went to the farmers market there’s a lot of things you can buy there that are that are processed, so yeah, like on the label.

Absolutely. I think you brought a really good point and also in popular perception I think gluten is where tofu used to be 10 years ago I remember these ads about tofu you know tofurkey and tofu burgers and tofu being considered this such, you know, such a bland, horrible food and yet today once we’re actually integrating real East Asian cooking that actually uses tofu, it can be the most phenomenal for just not understanding the, the the cuisine or the cooking because there’s so many there are many cuisines in the world that are predominantly gluten free. So I find that one of the things that is overblown, in the gluten free world is this idea that this huge deprivation and I have never experienced it myself. Yes, there’s temptation, there’s a lot of food, but 10 resisting temptation, or going into an anti inflammatory diet does not equal deprivation to me. So it just it’s this idea of over torturing our kids, which is just completely nonsense to me.

Agreed agreed. And I think it’s great if you do have the opportunity to go out and eat in a Japanese restaurant or an Indian restaurant and see all of the out Indian restaurant or South Indian restaurant thing. North Indian foods diet, which is what you predominantly get tends to be very, it doesn’t have to be but it it ends up being heavy in the wheat a little bit. So yeah, interesting. Yeah, I think that’s that could be a great starting point. And with that said, to realize that the way tofu is used, and the Japanese cuisine is just a little bit and never processed to the point of a tofu burger. So yeah, that is, you know, a uniquely American creation and yeah, not something I’m gonna promote. So there’s, you know, also fermented soy, all soy is not created equal. Yeah, there’s a big dip.

I think it’s a great I mean, and you have so much experience probably with Japanese food as well. I think it just like looking into traditional cuisines that have lived a certain way. Is is a is much more superior way of, of living an anti inflammatory diet, then trying to reverse engineer pancakes and waffles. Yes. As we come to the end of this podcast, is there one parting advice that you’d like to give moms and dads, or just deep breaths, deep breaths and just keeping perspective, we want our kids out socializing. I know, I want mine out socializing, I want to socialize. And so trying to figure out how to make those opportunities happen. I think it’s so important post pandemic for ourselves and our kids, and realizing that people really do want to help.

I think, by and large, I actually when I wrote this column, navigating the potluck on a special diet, I later saw my friend who’s organizing this potluck, and she had read the article and her response was I felt so badly. And I said, Why? And she said, you know, because I didn’t tell people that it should be a gluten free and I said, No, no, you know, why? And you know, it’s just, it’s I appreciate I appreciate the invitation.

I appreciated the time that goes into planning these events. And, you know, as a result of our conversation, she went back and said, you know, if everybody could just label the ingredients, so I do think there’s so much awareness and when we’re upfront with people And tell people what our needs his needs are, chances are that people are going to want to help.

Yes. And there is I think to add to that, I would say don’t be apologetic about your needs. I mean, living an anti inflammatory diet should be like, do it with pride, you know, open chest, this, this is how I live. People don’t have to make our dishes for us. And we don’t have to be offended if people bring gluten in, that’s a different thing. We’re fine. You do what you do, I do what I do, but I think to doing it with pride as because this, this is your life. This is how you’ve chosen to live it. There’s no need to reach come to every potluck, feeling apologetic about your choices.

Yeah, I think On the contrary, we see that people actually their response also was, I think that’s great, and some excitement and I want some of that too. Because if you’re there you’re full of energy and excited and regulated and, and calm and focused and so many things that you might not have been without. Yeah, yeah. Thank you for thank you for being here, Lauren. I know you do such, you know, such a fantastic job with, with just with, with navigating this diet. I’ve heard so many stories from you on other occasions in which we’ve met, so thank you for sharing some of those. And we’ll be linking to Lauren’s blog in the show notes.

So make sure to follow her blog because she shares a lot about her journey both, you know, both as a mom and also as as somebody who was constantly working and reworking these diets. And now friend, if you want to know more about how sugar can be part of a diet in a child with low attention, make sure you register for my upcoming free workshop at functional nutrition for kids.com slash workshop. See you soon

76 We are all Cognitively Intact with Jamie and J.B. Handley

76 We are all Cognitively Intact with Jamie and J.B. Handley

How do you go from a Fix-It approach to It will be OK to It is already OK?

Listen in to hear the inspiring story of Jamie Handley, non-speaking Autistic, who spells to communicate (and I am proud to say, my student).

As we split the worlds into models and opinions, I find it inspiring that we are already OK! “We are all Cognitively Intact” says Jamie. My favorite message from the podcast is when Jamie says to parents: “You need to practice!”. If I could distill the world of Assuming Intelligence into one sentence, that would be it.

This podcast is a must-listen for all parents and practitioners.

 


Audio Transcription: 

We are all cognitively intact. So that’s today’s guest, Jamie Handley. Hi, I’m Vice chemistry and functional nutrition consultant and science educator. I have the honor of being mom to a point with down syndrome and autism who also happens to be non speaking. But it was just a few years ago that I felt helpless at what appeared to be sits this regulation that issues really low energy and it looked like he wasn’t interested in anything that I had to offer. And sit in I’ve actually since travelled through 1000s of lessons learned about the gut the brain, and assuming intelligence is actually now on his way to have his first poetry book published.

I present this podcast functional nutrition and learning for kids in order to bring to you the lessons that have changed my life. In fact, one of these lessons is the magic of an anti inflammatory blood sugar balancing breakfast. In you know, the magic is in building focus and regulation. And I’m actually enrolling for a free savory breakfast challenge right now. So you get four free days of different breakfasts if you want to be challenged or if you want to challenge your family. Go ahead and join me at functional nutrition for kids.com. Slash breakfast. Again, that’s functional nutrition for kids.com. Slash breakfast. I can’t wait to continue my conversation with Jamie.

I’m really excited to have my friend Jamie here today. Jamie Jamison Handley is an 18 year old non speaker who was diagnosed with autism when he was two years old. Thanks to a new communication method called spelling to communicate. Jamie is now able to fully communicate and has switched from a life skills classroom and that’s within quotes. And I love that it’s within quotes. We can talk about that later to a regular academic classroom at his high school and he’ll be graduating in 2022. He plans to attend college and study neuroscience. Jamie hopes to inspire others with his story and he wants to dedicate his life to advocating for the rights of all non speakers. He lives in Portland, Oregon with his family. Jamie is also co author of underestimated an autism miracle, which is the story of Jamie’s journey to find a method of communication you’ve most likely read heard of or seen someone talk about this best seller.

Jamie is joined today by JB who’s Jamie’s dad and communication partner. I’m personally extremely honored to be Jamie science and sometimes math teacher for the past one and a half years. I’ve learned a lot from Jamie and I’m really excited to have you here Jamie is anything one say Jamie is spelling using his keyboard right now. So we’re gonna hear output from his keyboard.

I’m really glad you’re here too. And I really like that you. You put life skills within quotes because as we all know life skills classroom I’m not really sure what skills we learned there. But so let’s get started with the first question. So in this podcast, I usually talk about the intersection of gut health nutrition on one hand, and we’re talking about presuming competence equal education. On the other hand, both of these things are not things that are easily accessible for many autistic kids, in your opinion, which is the most important intervention or support or therapy that you have received in your life or which has made the most difference to your life.

I think Gail transplant help the most that was hard to hear he wrote I think fecal transplant help the most.

That’s really good to hear. I have a podcast with I think Dr. James Adams where he talks about fecal transplant but but that’s really good to hear. Thank you for sharing that. What is your journey been? Or your experience been with diets Food and Nutrition? anything specific that stands out? I think sugar and gluten are bad for me. Okay.

Jimmy has been gluten free since probably the age of two. And we generally avoid sugar. But like anybody he gets the occasional treat and usually he’ll let me know afterwards that just cause like his anxiety to spike. So those are two things we avoid most commonly Of course we avoid things like artificial colors and flavors and soda and all that you know really shop at a whole foods and we only shop out of the organics and and you know but he has a you know for breakfast this morning. He had bacon and eggs so he’ll have plenty of protein in his diet as well.

Plenty of protein and fat good. Yes. Plenty of coconut oil. Pretty good. That’s it. And that’s good to hear that from you. Also, Jamie that gluten and sugar affect you because a lot of times, you know, in when we’re talking to people that don’t necessarily believe in diet, it seems like an imposition. When we’re talking about gluten and dairy and we talk about inflammation caused by that when we actually hear it from your mouth that that affects you that actually makes a lot of difference.

It definitely impacts me. Yeah, I would I would just add two really quick Things one, you know, we just be tried, right? Like, let’s just take it out and see what happens. And like, it was years ago, but the world was really Stark, right in terms of how much more cold he was and how much better he slept. So that was pretty easy, right? Like, why would we reintroduce something that makes him hyperactive and can’t sleep? Exactly, um, and then some doctor very early on gave us this simple advice that anything they gorgeous, bad for them? Anything, anything, they gorge on anything, they just sort of anything that’s addictive.

And yeah, so that was actually a pretty simple metric. So we would just watch and if he just got a little too ravenous on something that was typically a sign that it was worth removing or finding a substitute for.

That’s very nice. Yeah. And I like how you said that it’s pretty easy that you have to take out I think a lot of people find it is very hard. But I agree with you that once you’ve made the decision that it is this regulating, and you have to take it off. It is it is really easy. If it doesn’t work in 2004. When we removed gluten, it was a little bit of a challenge.

Today, I don’t have any sympathy for somebody because there’s duties bagels that are gluten free or delicious. The pancake mixes are I mean, you can completely live a normal hamburger buns? I just Yeah, yeah, they’re not there’s nothing that isn’t really darn similar, if not, in some cases better. That’s gluten free. So I don’t think anybody has a reasonable excuse that they just apply a little bit of time to it.

Absolutely. Thank you for sharing. One of the questions I had is that I know that Jamie, you’ve probably gone through many doctors, you’ve seen different specialists in what may be used to be called biomed is now called functional medicine. Is there? Are there any experiences that stand out? We’re going to follow this with a question about what you want to tell these doctors and you can mix them mix the answers up in any order that you want. Yes, I love Dr. Hart in Tennessee.

I’m going to have to explain that one. Jamie said I loved Dr. Hart in Tennessee. So we definitely pursued all the dn protocol that became the whatever protocol and you know, curcumin vitamins and hyperbaric oxygen and far infrared sauna. And, you know, our list is voluminous, we kind of have an attitude in our family that if it can’t hurt him, right if there’s not a genuine risk, but it might help. So we never did like stem cells or ibig. And I don’t want to disrespect those who just for us the risk reward we couldn’t quite there. Okay, so he’s referring to Dr. Martin Hart, who works at the biologics center in Franklin, Tennessee.

We’re not part of like the biomed autism world. And I would describe Dr. Hart as a more of an energetic healer, who uses a combination of homeopaths and energy medicine and conventional medicine and treats everybody very distinctly and we went there last summer for a couple of weeks. And Jamie really felt like it. It helped him a ton. And I almost feel like when they come complexity of what these kids are dealing with, you know, you kind of need somebody like that where it’s very, very comprehensive. What are we two weeks in clinic, not like in a bed, but like two weeks, like jumping around between therapies and doctors and everything else that he went to. and Jamie came out of there saying like he felt the best that he’d ever felt.

That is fantastic. That’s good to hear nothing hard. And his name is spelled h AR T.
Yeah, biologics is the name of the clinic in Franklin, Tennessee. Yeah.

So, Jamie, some of the times when, in my overlap with the biomed community, some of the times I’ve seen a lot of a fix it approach where there’s not a lot of presuming competence. And I think that’s coming in. But do you have anything you want to share from that perspective? Is there anything it could be an experience or it could be just a message to to people that are working in that field? How would it change if they actually presumed competence, all cognitively intact? So he said, We are all cognitively intact. And I do agree with you vice, I would just add my own little editorial that. I think that having kind of embraced the biomed approach myself and my wife as well. You’re It reinforces some things that I think are simply untrue, right, because my child has damaged their brain damage, we have to reverse the damage. Right?

I think that it’s been interesting with the book, in the ability to communicate, you know, it was probably good that it was me and Jamie who wrote the book, because we do have kind of a profile within the biomed community. So people were more willing to listen. And I think it was a shock to some of the biomed parents who are extremely well meaning to realize that maybe some of the things they’ve been, yeah, I don’t think anybody, I think everybody has had great intentions from doctors to parents, but sort of had been led to believe that there was damage and I do actually think there’s something going on, there’s some kind of impairment in the motor cortex.

It’s a theory, by the way, not something I can prove. It certainly comes out in the way Jamie kind of explains how hard it is to make his body do certain things.And so I hope that’s a real clue for people who are more who are neurologists or who are inclined to study it. It’s like maybe the genies of the world of which I believe all the non speakers are just like Jamie and he does too. Maybe they’re giving us a really big clue as to where that I don’t want to call it damage, because I think that’s the when the challenge or the problem exists within the brain itself. Right. And anyway, it’s been a real, I think it’s been a real leap for a lot of these biomed parents that I’ve been on the phone with some of the more hardcore ones who are good friends of mine, just it just takes a while to get it.

You know, like, I’m like, I’m like saying to them, like, no, like, he’s, he’s just a normal guy who can’t, he’s fine. He’s like you and me, all there.And so is your son or daughter, and then to watch, to watch, some of them go through what we went through, as the layers of disbelief evaporate, and you start to realize that your child was always there. I mean, it’s beautiful, and magical and tragic, kind of all at once. And so I do think you’re right, that the biomed community has inadvertently reinforced a belief system about these children, which I think is 100% wrong, right. And so I’m thrilled to be able to speak about it anytime. And I got to tell you, like, it’s such a weight off for a parent to know that they’re all there and you know, we’re not gonna, we’re not gonna stop pursuing interventions that might help our son to be more comfortable. And that’s what you want.

No different than if I felt crappy, I would pursue interventions to help myself, you know, or my wife or my other my other children. But what’s different now is we can get all of Jamie’s feedback starting with didn’t even want to do this right. Obviously, Jamie has agency and you know, like, when we went to see Dr. Hart, Jamie was already fluid. And so, you know, we went on the website, we watched the videos, we actually brought a family over who go into the clinic all the give Jamie information, right? And then, based on that, he was given the choice, would you like to go to this clinic or not?

Yes, I would, here’s why.

Great. And then each day, do you? Do you want to stay here? Is this working for you, I mean, you know, like, that’s, that’s what we’re now able to do with him. And so we will never stop trying to help him optimize whoever God intended for Jamie to be. But we get to have him as a, as a co partner in all of it now.

That is great. Jamie, maybe this podcast will be titled I’m cognitively intact, because I think that’s really the message we want to get were to move from a journey of, you know, kind of feverish, Lee fixing your child to just simply kind of a Happy journey with your child, and I can see how, I guess you’re spelling something now. Yeah.

I think that all of us benefit from natural interventions. Jimmy said, I think that all of us benefit from natural interventions. Okay, so part of supporting is health. And one thing I would advice when you’re the parent of a newly diagnosed child, and you kind of get brought into the biomed world, one of the mantras that I think really needs to be challenged, that I think is completely untrue, is that you only have this window of time, right? And people paint this in very stark terms. And that’s very alarming.

For a set of parents where you feel like you’re literally your child’s life is at stake, right? So it becomes very life or death. Feeling which is you know, is very stressful on the body and on like your existence, and I wish I’d known that what I know now it would have been, I would have been a lot more chill about the whole thing and just recognize that I was on a journey with that guy, you know, there’s no window and and we’re sort of told, like if you don’t get them through the window in time, they’re going to be cognitively hosed forever.

Right. So I think that entire paradigm is mythology and patently false, right? And so you tell parents that and their will meeting and all of a sudden their life becomes this race against time. And, and I hope some autism parent out there hears me say this, and they can just take a chill because I feel like I live to be 120 if someone had told me that when I was right after Jamie got diagnosed, you know, and I didn’t have to spend all those years. It’s sort of weird vice, like, I spent all these years worrying about all this crap that like wasn’t even true, like real waste of what a waste of energy. Right? And what is your quality of life?

It absolutely does. And it certainly didn’t help my nervous system. And we only have one body in mind got ravaged, like, you know, in the stress area. Really, for no reason. And that wasn’t Jamie’s problem that was just that there was a scale of ignorance about autism, everybody well meaning and well intended. But you know, if I could if, when I talked to parents of newly diagnosed kids today, it’s hard, right? Because they’re like, in shock, but it’s like, it’s gonna be okay. It’s gonna be okay. You know, it really is. It’s already okay.

Exactly. Exactly. You know, that’s really hard, right?

That’s the harder earned wisdom that you and it taught you. I think there’s a big gap in acceptance.

I mean, it’s easy when when you’ve kind of crossed over to the other side, you say it knowing that it’s already true, but it’s so hard for someone who doesn’t see that future to, to understand and believe that,oh, okay, I was that person. And so I have, I have so much empathy for those people, and you’re never going to be able to, like, turn them into, like Zen beings, you know, a month after the initial diagnosis, I understand that. But to to disabuse the idea that there’s a window, and there’s brain damage, and they’re never gonna this and never that those are the myths that I think are, aside from being completely false, or that really, really damaging to a family. You know, and, and, you know, we feel lucky that 17 we realize they were all missing, the impact of the quality of our family’s life has skyrocketed.

I can only imagine. Yeah. Jimmy, a lot of people are going to say a lot of moms and dads that listen to you are going to say that my son, isn’t you, Jamie, that he doesn’t have the motor skills you have he’s not as savvy as you are. You may be able to do all of this. My son can’t. What are you going to? What can you tell them? You need to practice?

You said you need to practice. I don’t like that. But okay. Weisz, I think one of the few reasons that I worry sometimes about putting Jamie on camera is because then parents who have children who struggle more with movement will conclude Oh, well, right, Jamie can do that. Because I just saw him, he sat in the chair for an hour. My kid can’t sit in a chair for more than, you know, three minutes. So of course, they couldn’t do this, right. That’s so my fear is like by seeing how regulated Jamie is, parents of non regulated kids will decide this isn’t for them, and they’ll never give it a shot. And Jamie has a friend who I won’t name by name, but who does have a lot more movement challenges.

In fact, he has several but he has one here in town. And it was really important that that child meet with an OT who really understood that in this child’s case, he would actually need to do some ot therapy before spelling to help him get his body regulated. And they figured out that the ocular praxian, right, the chat, the ability to move his eyes where he wanted them to go was more severe. And so the board needed to be adjusted accordingly to make it easier to see letters and everything else. And there was a lot more complexity that went into this particular guy’s ability to get onto the board. And it took a lot longer, but he’s persevered. And now a year later, he’s selling fluidly And so yeah, you may not be blessed like we are with a highly regulated child. And I want to bet that Jamie wasn’t, you know, as a child had his moments of dysregulation, too, right?

Yeah. You know.
So it did take a lot of work to come here as well.
It did. And we would argue that the dietary changes, even the FMT that fecal transplant, and then obviously, like, so so it’s important to remember that what we’re doing in learning to spell out all this stuff is we’re myelinating pathways in the brain that didn’t exist, okay? No different than learning a sport, learning how to hit, you hit a golf ball, or you got to throw a football, whatever it is. We’re myelinating pathways that didn’t exist. It just takes time and repetition, right? And then the brain is neuro plastic.

He just started doing things. This is, this is how God expresses joy. I think that he enjoys hearing your voice and yeah, and you know, one of the great things about Jamie is like, mood manifests. Manifest laughter Yeah, you’re happy New York. Anyway, so I you know, I would tell a parent of a child with more moving, Jimmy wasn’t always this chill. And he’s become more chose, he’s become a better speller. Right?

The Dunmurry referred to that as top down regulation. It’s sort of like, you’re more calm, because you’re more happy, because you can communicate like they all kind of work together. And I like that I like that term, top down, because we’re always trying to work Bottoms up. And then there’s top down too. Yeah, yeah. Because he’s just happier. Yep. Are we all? I mean, you have those moments in life, right? Where everything is kind of like, okay, and maybe you just had a great massage, or you just had a great workout, or you just had a beer or whatever it is that kind of, and you’re like sitting in a chair. And you’re like, Ah, I’m so you’re sort of at your most regulated? Right, we all do that. And so the very act of being able to share with the world who he actually is, has been very regulated for Jamie, understandably, he used to be what much more movement, which is cool. So talking for your advice. I think parents need to hang in there. I think parents need to hang in there.

You know, I think about Jamie’s friend here in town who’s now spelling fluently. They could have easily given up, you know, and it’s hard. Like, if you don’t, if you don’t genuinely believe if you don’t presume that competence, like truly, the child picks up on it. It will it will affect your commitment. Totally to make for some people I would you know, I don’t want to plug my book, really our book, but like, read the book, like we were there, you know, we you know, but but if you believe it in your heart, you’ll never stop. Because it, it feels profoundly Cool, right to stop because I have to give this beautiful mind a way to get these words out, like how could I not keep fighting like they’re trapped.

I mean, I don’t mean to make people feel guilty, but like they’re trapped. And so his parents were their only hope, you know, and I mean, I talked about this when the book was published. It was the reason that like, it just it wasn’t all written by him. It could have been questionable, you know, like the reason I jumped or something, but schipol we wanted to give the paradigm. We wanted to give the parent narrative, as if the parents don’t buy in the kid never get saved. themselves. Right? Right. But non speaker kid, pick up the phone and call Elizabeth Bosler and schedule an appointment. Right? And it’s just a leap of faith that a parent is going to have to make in the beginning and like Jamie said, they have to hang in there they have to practice practice may be beyond anything else but but it is the truth. There is no it this is not a skill that’s unique to Jamie and said and a couple of other kids and eat or anybody like that this is everybody is competent.

Everybody has it in there. It’s a there is the brain and there’s cognition. And that’s fact. So, you know, I’ve honestly, I’ve lost count of the number of non speakers who we’ve personally interacted with who now are open.

Well, she was counting. And my point is like, you know, I think we even say it in the book. Jimmy hates the word miracle that’s used in the title The book is called like, underestimated and autism miracle. That word that was a publisher word. And he hates it for an obvious reason. Miracle implies You know, one of the million miracle implies needle in the haystack. And it implies something that doesn’t happen naturally. Right? Yeah.Yeah. point is is hardly a miracle.

Yeah, it’s true for all of us. You know, that’s always been his thing and I mean, you know, the hit rate on parents who’ve tried this, who persevered of people within our inner circle is 100%. It’s 100%.

There is nobody who has tried this consistently that, that it doesn’t work out for you biomed parents are are tough like biomed parents putting the time, you know, generally speaking, tell me to say that non biomed parents don’t. But we all know there are some parents who kind of hang it up in the authorities take it over. And there are others who, who dig in deep. And one of the biomed parents I know are grinders. And so as soon as they’re able to change their mindset, they’re all in. And that’s why I say that I’ve lost count, because and I don’t mean to, I mean, I celebrate each of these, quote unquote, miracles. But honestly, it’s to the point where when I get that phone call, and like, they’re just like, filled with euphoria, finally seeing the open words, yeah, like, whatever, of course, thank you.

Notice, Yeah, I know. I mean, you know, there’s only so many times I can like act surprised, right? Sorry. I’m not surprised. Like, you know, I was surprised when Jamie did it the first time, I’ll tell you that I was really surprised. And I shared it with every person I knew. Right? But I’m not surprised anymore at all, you know?
Yeah. I remember just just as we wrap up, Jimmy, I just want to share one anecdote of mine is that we met a lady that we hadn’t met in a long time and said used as like a boat to spell Hi, auntie. And she was thrilled that Sid knew how to spell Auntie, and I didn’t know how to react to that situation. But But yeah, you know, these things happen. Yeah, exactly.

That, like I’m telling you, if I should, it’s so funny. Like, it still takes takes people a while, like, so if they come and sit with Jamie in person, then they that is sort of undeniable, like what they’re actually dealing with. But when they don’t, they really like like, so like, some parents will have a kid who like, he’ll hit like, the little images on an iPad and kind of like, piecemeal a sentence together, and they’re really happy. And I understand why. And you’re like, No, that’s not what I’m talking about. Yeah. You know, like, I’m talking about, like, full access to like, every thought and feeling inside his brain. And I’m not talking about I want cookie, I want food. I’m talking about that. Yeah, yeah. Right.

It’s just about the world right now. Because, you know, I like complex sentences. And people just don’t necessarily appreciate what what’s being said until they kind of see it in person sometimes.

Janie, this has been, this has been a great conversation, hopefully, really mind opening for parents biomed or not, that are watching you, and you know, are able to do this with their kids at some point of time. Do you have any parting words?

I’m thankful for people like you who believe in us.

I think, did you hear that? Yeah. Jimmy has a lot of gratitude. For really the group of remarkable individuals of which you remember who, who are kind of leading the way in, in believing in these kids. And we our family feels a tremendous amount of gratitude to folks like you like Elizabeth vossler, like Don Murray, Dana Johnson, I mean, there’s so many names, I wouldn’t want to start listing him because I leave somebody out. But these kids needed a voice in our world, right? And they’re getting they’re getting those voices are getting louder and louder. And and now, obviously, and you know, this well, Vice, the non speakers have their voice that’s the most beautiful part, right is that they’re self advocating, and but those pioneering people who believed in them, and believed that there was more, have had saved countless lives. they’ve saved our family, for sure. And and so I know that Jamie feels a lot of gratitude and appreciation.

I feel gratitude also for being part of this community that none of this ever expanding community, not just in Portland, but throughout the world, the fact that we actually have community which wasn’t the case a few years ago, the fact that we can actually come together and call ourselves a community. So I’m very grateful for that.

Imagine a few years we’ll be like, exactly. Thank you, Jamie. I know that a lot of people will be touched as they have from your book, but also with your with your interview.

Thank you, Vish. What a wonderful conversation. This has been outstanding. If you’re new to the world of AC or spelling as a tool for communication. I would really suggest if you haven’t already, go and check out Jamie’s book underestimated and autism medical. And see you next week. Bye.

75 Vision and Learning with Trent McEntire

75 Vision and Learning with Trent McEntire

What do learning disabilities, attention, focus and behavior have to do with vision?

Join me as I discuss this topic with Trent McEntire, founder of www.fireupyourbrain.com as he leads us through different ways that vision can be impacted misunderstood as learning disabilities.

Also if exploring Learning Hacks is your thing, check out my free ebook at www.functionalnutritionforkids.com/learning

 


Audio Transcription:
 

What does vision have to do with learning labels?

Hi, I’m Rajesh chemist and functional nutrition consultant, and science educator, as mom to a poet with down syndrome and autism who happens to be nonspeaking. It’s just a few years ago that I felt helpless at what appeared to be sits extreme dysregulation, lack of communication, low energy, and basically disinterested in anything that I offered. Since then Sara and I have traveled through 1000s of lessons learned about the gut, the brain. And the real real importance of assuming intelligence, said now lives a mostly regulated and motivated life filled with what he calls gory ambition. And it is my mission to make sure that this regulation is accessible to everyone.

I present this podcast functional nutrition and learning for kids in order to bring you the lessons that have changed my life. If hacking learning for your child is your thing, if that’s of interest to you, you might want to check out my free eBook at functional nutrition for kids.com. forward slash learning. Again, that’s functional nutrition for kids.com forward slash learning. It has six learning hacks that you may not have encountered before. I’m really excited to have Trent McIntyre here today as my guest. For more than two decades, Trent has been helping people gain back their mobility, which is a story he knows well. He was born with a mild form of cerebral palsy and experienced pain and stiffness every day from the time he was a child. The methods that chant is discovered to repair his own body also became the foundation of what would be his life’s work. Trent has a background in dance, he has a degree in dance and that required in depth movement, science and training, including to my delight fell in Christ, which is a modality that I am very, kind of taken with actually, and other forms of movement analysis, kinesiology, and anatomy.

After graduation, Trent has actually pursued a career as a professional dancer. And throughout his career, he’s continued to leverage his methods to repair his own movement limitations, and also helping other professionals overcome their injuries. For more than 20 years, his methods have changed 1000s of lives for movement professionals and clients. And specifically what we’re interested in is children who study with focus, but also since seniors have lost their balance and mobility, individuals experiencing neurological conditions, and athletes who have suffered concussions and injuries.

His methods and tools are now used across the board. Right now his mission is to deliver his methods and tools to everybody that needs help moving past physical and brain related limitations, his programs called fire up your brain, and it was created as a fun, engaging, and affordable way to support this mission. Thank you, Trent, for being here. I’m really excited to talk with you about how movement, neurology and I know even vision are all related to each other. Thank you. It’s great to be right. It’s an honor. Thanks. Yeah. Can you start off by telling us a little bit about your childhood in your background? How, what are the challenges you experienced and how you came about movement? Yeah, and I’ll tell you to sort of best portray that, it’s worth knowing that I didn’t know that I was born with cerebral palsy.

I didn’t know until I was 19. And so what had happened is, I was I was in college, I was dancing and at a very high level for many hours a day. I was also doing training outside of dance. So I was that was really fit and taking care of my body. And then I woke up and I couldn’t walk in the morning like I could barely like hobble to the shower. And all of a sudden, yeah, like just I woke up and I was like, Whoa, in my from my knees down. I just had burning pain and inflammation and so much restriction that I thought man this is this is really bad, but you know, sort of like push through and get warmed up and, and make my body do the things I had to do.

The next morning again, I’d be hobbling to the shower. And it just happened to coincide with being home for holiday break. And I was just complaining to my mom and I was like, you know, I don’t I don’t really get what’s going on. I’m like really in a lot of pain and I’m doing all these things to take care of myself, but I’m so tight and stiff and have so much pain from the knees down. I don’t get it. And she said well Trent that’s because you were born with cerebral palsy. And I was like, wait, wait, wait, what? And, and she’s like, Yeah, but remember when you were three, they the doctors put casts on your legs from the knees down because you had zero ankle mobility so they had to force your heels to the ground to create some kind of mobility. And then I had this like flash of memories of like I do remember having this cast and I mostly remember my brother torturing me but throwing me in a snowbank but that’s another story.

You know, but the reality is is like I had these memories come back and I was like wow and and what? Being a class one like a low form of cerebral palsy. You wouldn’t know by looking at me that I had limitations or restrictions and and people often don’t realize that. cerebral palsy is basically a brain injury. At birth, so, you know, I’ve healed from the brain injury. But while your brain is trying to heal from the injury, you have to learn other ways to move your body because of the damage that’s been done from the injury. So while I’m recovered, and it’s not something that progresses, those limitations on my body caught up with me when I was dancing. And so I learned to compensate really well on my body until my body couldn’t handle the compensations anymore. And it was at that point that I really decided to, to problem solve for my own injury. And that was where, you know, for years, it was just for me, I rehab my own injury, I was able to go on and dance professionally because of that problem solver that I just decided to pursue. So yeah, it’s it’s pretty wild to to have that kind of merge in my life.

Yeah, and you, and I was reading your story and your talk about this one. I think it was a conference where you were passing by vision therapy booth. Is that accurate?Yeah, yeah. So that that’s the other thread of this whole thing is that reading has always been very hard for me. And so I’ll work my way to that conference. Because it’s a really, it was an aha moment for me in my life and my career. But when I was in third grade, they, my teachers like, yeah, by the way, he really struggles with reading. And the way we’re going to help him with his struggles, is to give him more reading.

The other thing that’s really hard for him, let’s make them double it up. And let’s have him do work at home and answer questions. And so but that’s what was done that was sort of like the go to thing. It’s like, oh, but it wasn’t that I had the inability to read write. So more practice might help me have the ability to read it read for her, because she didn’t have the assessment tools to know that it was something else. But it actually was my eyes. So my eyes literally just didn’t function together, they didn’t see the same word at the same time. So because they weren’t working together, it really messes with the brain. And it basically overloads energy wise, it just makes the brain have to work so much harder.

If your eyes are looking at the same thing at the same time.And I can I doesn’t ask you if it would be an oversimplification to call this like a motor or a muscle issue more than it would be and I’m guessing in your case, it was identified as a cognitive issues like he doesn’t know how to read, right? It was identified as cognitive for sure. Yeah, yeah, exactly. But it was it was more just the muscles of the eye, or was it was it is the brain involved also in this,so it’s both. So first, it’s the muscles of the eyes, literally, my muscles weren’t strong enough to make my eyes coordinate, my eyes didn’t have coordination, they weren’t strong enough. And they didn’t have coordination. Just like we think about the rest of our body wanting to have strength and coordination.

My eyes didn’t have that. And then so the result of that is that it made my brain overwhelmed. And so what would happen for me is, I would be one or two sentences in a reading and my eyes would be so strained muscularly that I would fall asleep, my brain would just shut down. But you wouldn’t know that necessarily as a third grader that Oh, I didn’t know that’s what was going on I know now, because I’ve done so much experience in studying to realize what had happened. But at the moment, I didn’t know I just hated reading. It was terrible. It felt terrible. I didn’t enjoy it. I enjoy stories, I enjoy learning. But the physical act of making a eyes work together was just too much. And, and so I problem solved that I was like, well, I’ll just listen to audiobooks. That’s that’ll be how I get information, you know, and it was a beautiful solution.

In college, I couldn’t do audiobooks for all my classes. So I would get up early in the morning and stand reading my books, so they wouldn’t fall asleep to force myself to get through the content. And, and that worked, I was able to graduate and read all my textbooks. But it was when I was at a conference, I was at a conference and there just happened to be a vision therapist that was there. And I stopped by and I’m like, this is kind of cool, what are you doing. And he did just a couple exercises with my eyes. And that was like, the light just went off. In my mind. I was like, this is what’s been missing from from at that point.

I’ve been working for a long time in my work. So I’ve been doing like a lot of problem solving for my clients and mobility work with my clients. But I didn’t, I didn’t realize that the eyes were such a huge, huge part of how I would how I could feel how I could focus how I could function in my life. And after just a few exercises. with him. I went back to my booth and a friend had stopped by and I had missed her. And so she wrote me a note and I picked up the page and I read it like I know like fire like I’ve never read before in my life. And I was like oh, there’s something to my eyes not being strong enough here. And that was the start of me incorporating and researching how important the eyes are when it comes to everything we do in our life.

That is amazing. The lot of lightbulbs are going in my head but I almost want to go into a soapbox of my own, which I won’t but I do want to share this that a lot of times when parents come to me for consultations, they’ll talk about their child having learning disabilities which are diagnosed because their child is in his in reading age appropriately. They’ll say he’s reading but he does In any comprehension, and immediately, that’s a cognitive label and Okay, this child isn’t up to par for whatever but but reading does is is often not a cognitive issue at all. It’s like you said, it’s a visual issue.

It’s what another guest called ocular motor. It could be that, and it completely. Yeah. And, yeah, it could be so much more. But, um, what we often do is because we need them to comprehend their reading, we slow down, I think you were awesome that you actually went to audiobooks. So you could still get complexity and information and you didn’t, what we’re doing is, you know, for lack of a better term, we’re just ended up dumbing down the input they get, and or forcing them into lower complexity of information coming in for. And most of the time, there’s nothing cognitive going on there. So something that deeply upsets me.

Yeah, to me, too, because, you know, when you look at any individual’s potential, and in they’re told they have a cognitive problem, you’re stupid, okay, I’m stupid. I believe that now they, the people that I trust, told me that I am, so I must be. And society says that people who have these these issues, you know, they have these jobs, they don’t, they don’t make this of their life, they don’t achieve these goals, they don’t really have the kind of goals that other people do that have that are smarter, you know, so it really has this profound effect on someone’s life. And I am so thankful, even though it’s bizarre that I didn’t know that I had the diagnosis, I’m so thankful I didn’t have a label.

I’m so thankful I didn’t have that piece of like, Oh, well, you’re different. And you should go into this special class because you don’t have these abilities. And given those labels, but yeah, it’s it’s challenging, it can really, it can create a trajectory for someone’s life that is inaccurate to what’s really going on in their body. Absolutely. And we have so many ways of diagnosing cognitive delays are in which are all based on stuff that are not necessarily related to cognition at all. So we have so many ways, is he speaking? Is he reading? Is he I don’t know moving correctly. So all of these this is tongue protruding? None of these? Why would that have anything to do with how well you can learn, but we have we have these boxes? And hopefully, I mean, with more work like yours, we’re slowly getting out of those.

Yeah, I hope so. I think about my memories as a kid when they are when they would test your eyes in school, and, you know, he go to the library, and they do your eye tests, and be like, yep, he can see clearly he doesn’t need glasses. So you so first Sit, sit, really still don’t move, and then see if you can read these letters and numbers and objects clearly. And that’s the extent of vision testing.

There wasn’t, there was no movement, right? So we’re gonna keep you static, and just test acuity, how sharp Can you see an object, and that’s all you’re going to test. If instead, you were looking at movement, and coordination and strength of the eyes, you open worlds for kids, I mean, that’s, that’s where you can have profound impact. But that’s not really how we have ourselves structured when it comes to measuring the eyes, we go to go static, and we measure acuity, mostly, you know, there are wonderful vision therapists that if you have if you have somebody that’s at a certain level, where they end up going to vision therapist for that high level care, that’s great, but I think at every level and entry level is like how strong are your eyes? How coordinated are your eyes? If we’re if we’re asking kids to climb a rope in gym, which is what they did when we were kids, we were kids.

I’m a rope like okay, but what about my eyes like the most important sense in my brain wants the most information from my eyes that it prioritizes the eyes You want me to climb a rope but let’s look at the eyes the brain really, really prioritizes that so I feel like we should follow follow the science and that way you know, yeah, so you’re saying that we’re just an even now i think i don’t think so much has changed unless you actually go to a vision therapist and nobody’s asking you to go to a vision therapist even if your kid has within quotes a learning disability So what you’re saying is we’re just looking at acuity you’re not looking at coordination maybe there’s like an additional thing of visual processing in your brain and we’re not even looking at that so yeah,right right.

We’re not looking I mean not you could you can go at different levels with what what your eyes and how strong they are, you can look at the different kinds of movement you know, there’s different kinds of movement, there’s slow movement, there’s where where something not just sitting closer or further away, being able to converge on that and depth perception. There’s, you know, still points to be able to track there’s there’s all kinds of things and measuring it with movement in that measuring with with being static, that’s the biggest thing. So yeah, and then there’s this whole thing I think, with parents, I mean, I have kids and, and, and my daughter’s ADHD and there’s this whole thing of that I see with other parents, they’re like, well, I don’t if I don’t take my kid division therapist, then there’s a problem or or if If I do take them that means that there’s a problem. And and I don’t want to have to.

I don’t want to have to face that. So then I get to them. Yeah, yeah, yeah. Sothat value kind of gets pushed into the situation. I’d like to just normalize it like, our eyes are super important. And if you ask anybody, eyes important, oh, yeah, my eyes are super important. Well, then I think there’s just a, it’s a call to consider. How are they important? What What impact do they have on your life? Because what if, what if you’re missing, you’re missing a huge opportunity? That’s what I see.

Yeah, yeah. Well said. I do want to ask you about your training. But I also, before maybe leading up to that question, what what is the most significant intervention that you’ve seen when you’re helping kids with focus issues? Well, I want them lump focus hyperactivity behavior in one, but you’re welcome to separate them and see usually what together? Yeah, yeah. Well, when you ask me that question, I get goosebumps everywhere. So I’ll tell you one of my favorite stories, because it’s just about the ripple effects that it can have. So one of my favorite stories is I had, I was I was at a conference, someone had purchased a brain speed ball from me, took it home, they lived in Chicago, and then they’d given it to somebody. So I got a call from a stranger, telling me that her whole life her whole family has transformed. And I don’t even know who this person is. And I didn’t train them, I didn’t show them how to use it. She said, so I got this fall, and I brought it home, I said, I’m gonna counter and my 13 year old daughter found it, and decided to start playing with it on her own, making up her own games. And as I said, I talked to my friend and kind of learn a little bit more about it, and kind of we talked about how to use it. And she used it on our own as a way to focus before homework, and for the first time in her daughter’s life, she could sit and do her homework, wow. And what that did to their family dynamic, the stress that removes from a child not thriving, and not being able to function not be able to do the things that they’re supposed to be able to do.

This is so huge. So certainly for that, that young, that young lady’s life, it opens up possibilities for her, that’s beautiful, but the ripple effects into the family, that you know that that stress point gets relieved and the family gets hope. And that’s, to me with what gets me excited is like, this is so much more than just like, Oh, yeah, I should focus for an hour or the day or it’s getting better over time. And wow, it’s amazing. Your focus is so good, and it helps it with your life. Yes. But then who is she touching? And and what are those ripple effects that are that are feeding out from that?

What is the board do in terms of what areas does it address?

Yeah, yeah. So it’s like, if you and I were playing a game, a capsule, here it is so. So we have A through Z and one through 12 on the ball. And if you and I are playing a game of catch, it works like this, I’m going to ask you to catch the ball. And then when you catch it, you’re going to tell me what you see on the ball. So catch the ball. See, I’d say it out loud, I throw it to you, you catch it and say E and throw it back to me. And so a few things are happening that are built into this fun game, we’re just playing a game of catch. So that’s your brains like this is fun.

This is kind of interesting, this is different. But there’s a couple things happening that we’re just tapping into. The first thing is that we’re asking our eyes to track. So I’m asking you to watch the ball come towards you, and come into your hands. And because I’m asking you to look at a letter or a number on the ball, you’re getting really specific with what you’re tracking. So it’s it makes the eye the muscles of the eyes actually have to really come into play in a specific way, without telling you exercise your eyes, I’m just gonna say, Tell me what you see. And your brain will make your eyes try to find that spot on the ball. And so that’s the first level is it gets the eye tracking and the movement onboard. And the second level is that it taps into how our brains already processed. So your brain is going to sense what’s going on.

In this case, we’re really focused on the eyes, decide what to do about it, and then act on it. So that sense decide act cycle is already happening in our brain. That’s how we function in our day, we take in information from all of our senses, decide what to do about it in a very short amount of time and then act on it. So because I’m throwing the ball, you’re sensing where it is you’re tracking it, you’re deciding to catch it, is there a distance it like the fact that the ball is you’re focusing on something coming moving towards you? Does that mean it Yeah, yes, because that’s one of the eye movements is that convergence, it’s, it’s from far to near so not only are we dealing with tracking with eyes moving around wherever the ball is going, but now it’s also dealing with another eye, kind of another movement of the eyes which is coming towards you. So it’s just built in to the nature of getting specific with tracking the ball. Because you can catch this ball. Let’s talk like you could catch this ball without tracking it.

You could kind of assume where it’s going and not look at it and probably catch it okay, but Wouldn’t be really tracking the eyes. So you could avoid the hard thing of the eyes having to work to track it by just kind of like, Oh, I saw and then you kind of catch it or, you know, I’ll give you another example, I think of a kid who has a really hard time catching the ball. Well, if you look at their eyes, I’ll bet you that they have weaknesses in their eyes, their muscles, their eyes are weak. And so they’re not actually seeing the ball, they’re not going to accurately able to assess where the ball is in space.

You’re right, yeah. So. So the bottom line is, it’s a fun game also. And when, when you can make it fun, when you it’s about play, your brain is much more willing to participate, you lower the fear. So when you when you think about, like kids who are struggling, and the topic is serious, and they have a diagnosis, and everybody knows it in the school, and their teachers and their parents and their friends, they all know that they have this label, what a beautiful thing to go, like, we’re gonna play a game, I don’t really want to talk to you about ADHD, and I’ll talk to you about whatever condition that those other therapists are going to talk to you about.

Right, I want to just play a game with you. And, and by playing the game, we can see regulation improve, we can see that mood shift, we can see that things that were hard or not so hard, focus comes online. And not only that, but they have a really easy tool to use, whenever they feel dysregulated, whenever they want to accomplish something to have a tool. So you’re also teaching self regulation, right? So it gets it really easily becomes like, there’s so many pieces. And so, you know, you think about what your goals are what you’re trying to accomplish, and you can make the games, you know, specific to your situation.

So there’s a lot of variation that you can build into this as well. Yeah, there’s easily hundreds of games that I’ve I’ve played, created and watch other professionals that I’ve trained, create. And it’s one of the biggest things is that we encourage people that have the balls to get creative. And that’s part of the training like we, we we give you the foundation and the training. So you know, like, here’s the basics of the game. And here are different games you can play. But then also we give them a give you a worksheet. So you know, like, get creative with it, like, are you standing or kneeling, or you’re sitting using one hand, two hands, is one eye closed, are you playing the ball so you can catch it with one hand, so we want to find as many ways as possible so that it stays fresh, it stays new, and you want to keep doing it. And I remember that is one of the one of the guiding principles from my son did a lot of an advantage therapy, which derives from an Feldon Christ. And variation is is is one of the key factors that enriches the brain, slow movement variation, I remember that like a mantra. So this is great, because this is so simple, but you’re basically using vision and balance as as your tools to, to, I wouldn’t say leverage, but to just bring in focus. And you know, it wasn’t something that I thought of as being super related to focus, but I thought of in respect to cognition, but that’s that. So it’s really mind blowing, actually, I mean, I didn’t think that but these are literally just the two things that you’re you’re leveraging and you’re seeing so much increase in, in other things, probably events, focus increases, and guessing behaviors also change alone, Right there. It’s all interwoven.

Right. And that’s, that’s exciting, right? What I tell the people that I that I go through the training, you know, these are, these are parents and kids, it’s this is, this is like, really easy to do training. This isn’t like a whole course you have a complex course, right? But it’s like, if, if you can make this about what your main goal is, but then as a parent, watch how it shows up in other parts of their life. Because you don’t know without expectation, but just observe and build some awareness around like, oh, even though we weren’t focused on mood, his moods change, like he he’s more regulated and, and dysregulated less frequently, you know, and you can observe these things. And what I’ll do is tell you a story about a young girl that I worked with. So she’s on the Asperger’s autism spectrum. Her her mom was kind of vague about diagnosis, but that’s kind of how she described her. And she’s like, I really would love for you to work with her and help her. And I said, I totally do that. But we’re not going to make it about her diagnosis.

What’s something that she loves in her life? Like, what does she love to do? And she loves to dance? Perfect. I’ve got a backstory and dance, I can relate to her. I can I can find something about dance. So I was actually at a conference I was in my booth and she brought her by and you know, you know that at this point, she’s she was 14 or 15 I believe. she’d seen all kinds of therapists, all kinds of professionals, you know, and she’s used to very bright and she was ready for me to be another one of those people that was going to talk to her about her condition. And I was like, let’s talk about dance like When you’re in dance class, what is your teacher tell you that she wants to see you improve? Well, she says, I looked down when I’m doing my leaps, like, okay, let’s just make it about, let’s just make it about your leaps and looking down. So without my instruction, just do the leaps you’d normally do in class. And so she did them across the, the ballroom floor. And, and then we played a game, your brain speed ball, and just taught her how to track and play really simple kept the game fun challenged her, you know, not that she dropped the ball once in a while. So that wasn’t perfect. It’s really important just to keep it playful. I said, try it, try your leaps again. And she did reliefs and she’s like, Oh, my gosh, they’re higher, and my eyes are up, and I feel so great. And just after a few minutes, and it’s like, that’s really awesome. So we played some more, and we tried some different things we just kept playing with before and after results.

I mean, the measuring, I really like to measure, like what is really happening here. I sort of feel like we’re all doing other research because neurology and neuroscience is like, you know, we got this much information, even though it feels like a lot, it’s there’s just a little bit scratched the surface with that, I think is possible.So I like to get before and after measurements to really assess everything. So that was great. She had a great experience, her mom and her went away. Well, a few days later, I got a big long message from a mom saying I was I just want to tell you the ripple effects this had in my daughter’s life. She said after, after we laughed, she felt great. And that evening, there was a party at the event. And she said normally because she comes with me all the time with these parties. we’d stay at the event for maybe half an hour before she’d be so overwhelmed, sensory wise, that we’d have to go back to the hotel, and she’d have to sit with her eyes closed and just calm down and regulate herself. And she said she stayed for the first time in her life for the whole three hours, loud music crazy lights, totally regulated, not overwhelmed at all. She’s like, That’s never happened.

That’s amazing. And, and she said and also so you know, Trent, the day before we saw you, the conference happened to be in Las Vegas, we had gone out for a walk on the strip. And she had we were crossing the street and she just fell into heat on the ground. Because she was so overwhelmed with everything that was going on in Vegas, she had to like pick her up and like get her get her safely to the other side of the street. So the transformation in that short period of time was so profound to me, like that’s what’s so inspiring is like, you know, they saw it show up where it matters most in their life. Without me saying, Here, let me let me help you with that thing. That’s so important. You know, that’s wrong with you. You know, it’s like, yeah, you can you can sneak it in the side door.

Yes, no, that’s, that’s wonderful. As I’m, as you’re talking about dance, and and you’re talking about the ball, I want to ask well, I have a couple of questions about movement. But maybe that can be part of this question that if parents are starting out with, with their child being maybe they have a diagnosis of autism, maybe the child has a diagnosis of ADHD, but generally, they’re struggling with sensory overwhelm, moods, focus issues, maybe, you know, behaviors, and so on. Wherever you have them start, what are their like the top three things that you would you recommend parents do off the bat?

Well, the first thing is, is doing a little bit of research and understanding the importance of the eyes as it relates to regulation, as it relates to just brain performance in general. I really think that’s huge. That this is a this is a paradigm shift that I’m suggesting that when you’re when you’re looking at how you’re how you’re caring for your kid, you’re not going to get that instruction from every physician and therapists that you meet, they’re not going to be neurologically driven in this way. Lots of fantastic professionals that we need, but there’s this piece that’s often missing from cares, like how important the eyes are, to regulation to focus to brain performance. And so first I think before you just go and do something, you go Okay, Can Can Can I see this in science? Can I read about it? Can I can I eat there’s just a simple Google search is related to focus is related to regulation. And you can find all kinds of articles on it. And and so I think the first thing is the shift is just like, okay, that is a thing. And you can you can get proof that’s not me telling you you can go find your own your own proof that that is a thing. And then once you know that, that’s a thing that you incorporate that into your daily activities.

Now, here’s the caveat, not as therapy as a fun game that you play like you play a board game like you like you play game outside, like you go in the swimming pool, like a game you play it, that’s just a game you play. Yes. And, and you can’t play it wrong. Okay, so this is the thing is like, when, as parents, I know I fall into this category. I’m like, I want my kid to do it right? I want like, I want them to get better. So I want them to do this therapy. game right?So when they’re when they’re not doing it right No, no no do it like this.

Remember you got to do like this so that your eyes work in your brain. No, we’re talking, play a game, get your ball and just let them play, let them play and watch it improve. And in you learn you learn new games to play and you learn how to observe just to see what is because as a parent, you know, learning to see what is in this kind of detailed way is a new skill. So give yourself time and permission also to learn what is when it comes to the eyes because the eyes are the one thing that we can’t look at our own. We can’t watch our own eyes move unless you record a video and then watch it we can watch everything else move in a mirror we can watch everything else in your body move we can’t watch your own eyes move because as soon as we move our eyes We can’t see him anymore that’s such a you know that’s true and I never thought about it before Yeah, you’re right and so I think that they’re they naturally become invisible to us.

We don’t see our own eyes so they’re invisible So yeah, that’s maybe four parts but you asked for three oh no that’s fine How can parents you know find your work or work with you and so on? Yeah, so I would suggest they go to my website it’s fire up your brain calm fire up your brain fire up your brain calm Yeah. And I have a program called Ask Trent and ask Trent is a free program that I do for people who are curious about the programs and the ball people who have the program the ball and also professionals that also have clients and support them and basically what what it gives you the opportunity to do is ask questions and then I go live every month and I answer the questions that are coming in from people that are curious or using the ball or want to know how to how to have a better impact with with their kids or whatever the situation is and are you go live on your website I go live on social media so usually on Facebook but what happens is if you if you go to the website and you sign up for for ask Trent you’ll get notifications for when I’m going live and where that’s going to be and then afterwards if you can’t make it live, you get access to the video. So it’s a way to just feel like you’re not alone because so often with this kind of work, it’s like well, I feel really alone and we feel really alone when we have kids that have these conditions anyway just so you know you’re not alone. And and then coming from a space of of empathy and openness and learning because we’re all trying to learn how to best support the kids that have these needs.

Yes, it’s been it’s been great talking to you I’m I resonate with everything that you said and it’s you know, I am so happy that you’re talking about this. Like I said like I went on my mini soapbox the reading comprehension piece is a huge issue with me is that because I hear it all the time. Cognitive labels are a huge issue with me.

My own son has been put through so many cosmetic labels, which were all wrong, but but I am really grateful to have had the opportunity to talk with you. So thanks for coming on this live pleasure. Thank you so much for having me.

I hope you had fun listening to this podcast. If you’ve not grabbed my free ebook on learning hacks, go ahead and check out functional nutrition for kids.com slash learning. I look forward to seeing you again next week with a brand new episode. Bye

74 Why AAC is better than Speech – with Tiffany!

74 Why AAC is better than Speech – with Tiffany!

In this episode, Tiffany, AAC user and Autistic Parent of neurodivergent kids talks to us about the myth of supremacy of speech.

Have you been waiting to use AAC, so your child’s speech doesn’t get pushed to the side?

Have you been waiting with bated breath for every word your child is saying?

Have you been worried that AAC is a crutch that you don’t want to use?

Tiffany, in her crystal clear way, tells us that there is nothing wrong with a crutch!

This is one of the most clear interviews you are ever going to hear about the use of AAC. Don’t miss this one.

Listen on…


Audio Transcription: 

Why isn’t augmentative and alternative communication is better than speech is what we’re going to learn about in this podcast.

Hi, I’m Vice chemistry and functional nutrition consultant and science educator, as mom to a point where Down syndrome and autism who happens to be nonspeaking was just a few years ago that I felt helpless at what appeared to be SIDS dysregulation, severe gut issues, apparent lack of communication, extremely low energy and disinterested in anything I offered. Since then Sid, and I have traveled through 1000s of lessons learned about the gut, the brain, the gut, brain axis. And the real real importance of presuming competence, said now lives a motivated, regulated life filled in his words with gory ambition, and it is my mission to make sure that this regulation is accessible to all.

I present this podcast functional nutrition and learning for kids in order to bring to you the lessons that have changed my life. Now a good place to start if you are new is to check out my free eBook at functional nutrition for kids.com forward slash learning. It has six learning hacks that you’ve likely not encountered before.

On to today’s guest who is about to expand your mind. Today’s guest is Tiffany. Tiffany is 40 years old and a parent to three neurodivergent children. The two oldest are diagnosed with autism and ADHD. her youngest has sensory processing disorder and ADHD. She is currently a single parent, Tiffany was diagnosed with ADHD and auditory processing disorder as a child and Asperger’s at age 19. And again, with autism in our 30s, as well as epilepsy, she found out she’d had seizures since she was a child. that lady’s diagnosis is what led to her oldest son’s autism being discovered. And then later, her daughter, this interview is a treat, you get to hear Tiffany’s thoughts as she spells them through an AC device. And it’s mind opening and it’s a must for parents of kids who are minimally or unreliably speaking.

I Tiffany, welcome to functional nutrition for kids. I’m really excited to be interviewing you because I’ve been following you stalking you on Instagram for a long time. And I really love your field, your your feed, it’s it’s so authentic, and it’s and you’re one of the, you know, lone voices, maybe not lone voices, but when you one of the strong voices of ASC support on social media. So thank you. Thank you. So it’s my pleasure to interview Tiffany today, but I’m going to start with an AC question. I’ve heard so many interesting things about AC from your Instagram feed, what role has AC played in your life.

In the beginning, before I knew it was a form of ASD, learning to spell and thus communicate, actually taught my brain how to speak. It somehow opened a channel of communication I didn’t have before. I was in love with words and letters, and could read very early. But most of my speech was repeating what I heard from others.

Once I learned to manipulate the letters to form words, I could also figure out how to pronounce the letters and words together to form words, and then my own spontaneous sentences. I started with air writing, eventually was able to see my own words in my head. Still, to this day, I have to see the words in my head to say them properly. As an adult, who has been through many traumatic moments, I needed to be able to speak in talk therapy and couldn’t. In fact, forming words around feelings and emotions still doesn’t work spontaneously. Mike current therapist, who also was a therapist, for autistic children, had me write my feelings out to be able to do our sessions. Since then, I have felt powerful actually being able to talk about my feelings, even though it is through text or email, even when we are in person. It taught me that I don’t have to speak for my feelings to be important, and that my feelings do matter.

Thank you. So you brought in two really important ideas. One is that the enormous importance of communication regardless of speech or not, but also that you don’t have to communicate in order for your feelings to be important. So thank you for bringing that side to regardless of whether you communicate by AC by speech or not at all, at least in with as far as people can tell. Not at all. Your feelings are important and i’m i’m so encouraged that you found a therapist that was you know that you We’re able to work with and you liked. And in that context, have people in your life teachers, parents, friends, therapists, co workers, have they respected your AC and your speech preferences? How has that journey been like, really have no problems with friends and most family.

They want to finally hear my thoughts and feelings. And that gathers that they love that I can now my ex husband is a different story, and thinks, what I mistakenly thought before that my words only matters spoken. And if I can speak about mundane things, then I should be able to make my mouth work for everything. And that, yeah, that is a common misconception. And I actually just heard of, of a respected researcher saying that about minimally speaking kids that can use their words to say repetitive language, but are not able to, but they prefer spelling, in this particular case, letterboard to express complex ideas. And they were saying the same thing that if you can say one thing, you can say everything, which is the most absurd thing I’ve ever heard, how has this how has AC? And because you have used AC, and you’re an advocate for men, therefore, you’re also an expert at it.

How is this positively affected your parenting? How has this affected your parenting in general, maybe? Well, now, since I don’t have to stress about using my mouse to communicate, which is very exhausting at times, and sometimes impossible after seizures, I have way more energy conserved to connect with my kids. When I can’t form math words, I still have a way to talk. And AC can be visual. So it helps the brain does neurodivergent children to automatically have a visual. One of my children is dyslexic. And finally, getting a speech generating app has been a game changer for both of us. Because writing and reading is hard for them. But my most effective method of communication, now I can tell you what I need, and it is read out to them along with my other dyslexic family members, which means we can both use our best forms of communication together.

You are unique in that you you’re artistic, and you’re a mom of your mom of autistic children as well. So I would love to get parenting advice from us. If you have to give other parents with autistic kids may perhaps they have minimal speech or reduced speech or non speaking what are the three most important things you’d like to share with them? I asked because a lot of parents want to postpone AC because they’re afraid that speech will be delayed if they only rely on A’s and some parents don’t even believe AC as you know, so. So what what is your advice for parents?

I cannot stress enough how important modeling is for families. The more modeling the sooner to proficiency. situations they see models, the wider range of communication, they will understand and have at their disposal. It doesn’t matter if it is with a speech generating device or app with Facilitated Communication, etc. I think nothing is better than seeing the people around us use the same methods as we do to communicate with others. Next would be to start modeling as early as possible. It’s not fair that speaking kids are immersed in speech, but AC users only get a few sessions a month.

The more the student sees the communication methods used around them, the more time taken off the learning curve to proficiency. Next is that AC and other methods of communication can open up speech channels like it did for me. Speech isn’t the end goal. Communication in its fullest degree is the end goal. But some people may indeed need other communication methods to open up speech. So well said especially I am going to make I think like this is the highlight for me is what you said is that it’s not fair that children who speak are immersed in speech we make such a big deal of immersion of language immersion.

If you’re going to learn Chinese go immerse yourself in that land. Particular learning AC? Yeah, one session a week, okay. And if you’re learning some, you know, a different array or technique, then maybe that’s a session a month because you don’t have a provider in the area. So, yeah. So thank you for saying that you said that. I am paraphrasing here. But I think you said that speech is not the final goal. Right? That is, so that brings me to my next question. Because parents and therapists are so enamored with speech, right? So speech is like the holy grail, and that they want to stay away from a C, even when speech is not functional, right? So we know, we all know a lot of kids who, whose speech is not functional. And I can only imagine how much is in their brains that’s not coming out. And they’re just saying this motor loop over and over again. And do you think speech is secondary to AC? When it comes to communicating complex thought specifically? speech is not the goal. It’s not easy. It requires proper breath, muscle ability, processing ability, etc.

Why should someone has to work to meet other people’s standards, this communication just because that’s what they expect? Why should I struggle just to convey something I can do so in other ways that are easier and more efficient for me. People say using AC as a crutch. I don’t get that because crutches are good. They help people walk who would struggle otherwise, AC shouldn’t be considered a backup to speech. speech is my backup to AC. My words formed on my lips are not always accurate, or what I mean to say my real words come from written form. And I don’t have to worry about my mouth betraying me and causing confusion or anger and others.

In my heart, so full hearing that speech is your backup to AC This is so important for everyone to hear that it doesn’t have to be the goal that everybody’s it’s it’s not the finality of communication or anything like that. And you mentioned three or four things that are involved in speech and I. But one of them is bread, perhaps one of them is posture.

They’re smarter, they’re so much more. And often kids have problem with my son cannot breathe in and out voluntarily. He has motor issues. So what’s the point right when he can easily communicate complex thought through through AC? So thank you so many rich thoughts. And finally, I want to ask this question coming back to parents, because in a free world where there are no schools and no IPS, and everything is ideal, perhaps there’s a little bit more freedom, maybe. But when we’re navigating IPS and schools, they use speech to diagnose cognitive ability, at least I’m pretty sure this is true for most school districts, but our school district here, they have four levels of classrooms in disability and in decreasing order of academic.

What do you call that progress, and it goes by speech. So if you can’t speak, you get placed in the lowest level. And if you can speak fluently, you get placed, you get taught academics, you can prove yourself that you’re worthy of academics. So really sad. So what advice would you give parents when they’re navigating IEPs, and schools.

Insurance that whatever format is AC is received or used is robust. Meaning the student can communicate fully and not simply every person in that student’s life from parents, extended family, teachers, therapists, etc. You need to make sure they all understand and believe that every single person on this planet can learn to read and communicate and deserves to have people in their lives that will not accept anything less than that. Every human can read and communicate no matter how you feel their degree of severity of disability is. Without that, I wouldn’t trust anyone to make the right decision for my child. speech is also a physical thing. If I can’t speak, that is a physical disability. It has nothing to do with thinking.

We need to set this paradigm down that injured or disabled people have less cognitive ability than others. We cannot judge intellectual ability or depth of thought based on speech or mannerisms. Bodies don’t always or first Some people never obey the mind they’re attached to doesn’t mean the mind is missing.

100% I’m with you, 100% and thank you for thank you for sharing these thoughts. And I hope that my biggest goal with this particular episode that we’re recording right now is for parents that are stuck in the paradigm that you talked about that disability means intellectual delay or intellectual issues with thinking cognitive issues and so on. Be that speech is the holy grail, right that are that see, like you said, as a crutch. And I love what you said, What’s wrong with a crutch? I’ve never heard that line before. So I because I’ve always tried to talk to people. No, it’s not a crutch, but you’re right, if it’s a crutch so what its crutches are fine, you need crutches right? Sometimes.

Thank you so much for being with us and sharing your views. Tiffany and Tiffany can be found at Instagram at NIH functioning autism and it’s my dog functioning dot autism and HGH dot functioning dot autism. And I highly recommend you follow her on Instagram for really out of the box insights on AC that you’re getting directly from a person who’s a using AC and is also parenting and using AC as a parent.  So thank you. Thank you. for listening. I’m sure you have many things you want to try with AC right away for your child. Signing off. I’m your host

73 Neuroinflammation due to infection – part 2 with Dr. Jill Crista

73 Neuroinflammation due to infection – part 2 with Dr. Jill Crista

In part 2 of my conversation with Dr. Jill Crista, she talks about how neuroinflammation is triggered in PANS and PANDAS and autoimmune encephalitis by seemingly trivial phenomena.

If you have a child triggered into behavioral “regression” by a seemingly trivial situation, this podcast can help you understand why.

Dr. Crista emphasizes that Gut Health is the place to start. If you are struggling to understand where to start when healing your child’s gut, be sure to download my free ebook here:

www.functionalnutritionforkids.com/guthealth