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93. Getting started with CBD – with Dr. Julie Buckley

93. Getting started with CBD – with Dr. Julie Buckley

If your child struggles with anxiety, aggression, seizure, or even sleep issues, how many times have someone advised you – “Have you tried CBD”? Every time I hear this, I wonder how CBD can be the answer to EVERY problem?

It turns out, it is quite possible.

Dr. Julie Buckley makes her second appearance on Episode 93 of Functional Nutrition and Learning for Kids in this fantastic deep dive into CBD and how to get started for your child!

I learned 3 important things:

  1. Pure CBD (without terpenes, without THC) is not a sedative or psychoactive
    It is all about the dose
  2. Water-soluble CBD is the way to go.
  3. You can reach Dr. Buckley at  www.HealthyUstore.com

If you loved this episode, please share your rating at www.ratethispodcast.com/vaish

Disclaimer: This is not medical advice. It is meant for educational purposes only. Please consult your doctor before making supplement changes for your child.

 

 

Audio Transcript:

Vaish:

If your child struggles with anxiety, aggression, seizures, or even sleep issues, can you count how many times somebody has told you? Have you tried CBD? Every time I hear this have you tried CBD? I wonder how CBD can be the answer to every problem. Now it turns out it’s quite possible. Dr. Julie Buckley makes a second appearance on episode 93 of functional nutrition and learning for kids in this fantastic deep dive into CBD, and how to get started for your child. I’m your host wife. I’m a functional Nutrition Consultant for kids and a science and math teacher. I’m also a mom to an autistic teen poet with Down syndrome. Welcome to Episode 93.

Now, Dr. Barkley is the author of the book healing autistic children and your comprehensive guide to best breast cancer. She’s also an international speaker on Autism and Related Disorders. Judy is founded and is President of the healthy, you now Foundation, a nonprofit, which is dedicated to creating healthy living, treatment, and residential facilities for autistic individuals and their families. In addition, she is actively involved in research writing books, and raising two children with the help of a wonderfully supportive family. Dr. Buckley is spoken on this podcast about puberty and anxiety before that is episode 56. And you can find episode 56 at this link, functional nutrition for kids.com/ 2021 slash 56. Here’s a small disclaimer, there is a lot of detailed information in this podcast.

This is not meant to be medical advice is never on this podcast. It’s meant for educational purposes only. So please do consult your doctor before making supplement changes for your child. Hi again, Dr. Julie, thanks for joining us for the second time, this time for a more targeted conversation. But I’m really happy and grateful that you came again on this podcast.

Dr. Julie Buckley:

Oh, it’s my pleasure. Thanks so much for having me. Yeah,

Vaish:

Thank you. And last time, I think at the very end of our discussion we had talked about discussing CBD, which is a topic that I haven’t actually ever brought on this podcast before, and excited to cover it with you but the listeners and you can think of this as a CBD 101. I’m going to kind of start off with a general question. We’ll get into what it is maybe in this question or later. But nowadays, that’s the answer to everything right? Like of course with seizures and maybe neuroinflammatory conditions. But almost anything that an autistic child is struggling with is suffering from the first question that comes from other parents or their doctors is Have you tried CBD? What is it about CBD? Does that seem to make it an answer to everything? Or is that just a myth?

Dr. Julie Buckley:

No, it’s not a myth at all. It’s interesting. There are I think the answer comes from the fact that there are endocannabinoid receptors, on cells all over our body, all over our body. And they have many, many, many different purposes. I mean, we think of them primarily as things that are immunologically helpful and that are neurologically helpful. But CBD there are receptors all over your body all over your cells that are that can be used by CBD. And what is fascinating about CBD as a molecule is that it has the ability to bind to cells or into receptors, and to modify the receptor sites for other things. Oh, wow. So then CBD has the potential to influence not just CBD receptors alone, but also other receptors on your body that have other jobs. So it is sort of like a snake oil that actually works. It’s how we say that about hyperbaric because hyperbaric oxygen, and it’s like, it’s the snake oil that actually works because it works for everything. And CBD is a lot like that. It really does have tremendous potential to do an awful lot of different things.

Vaish:

So it may not be influencing that particular I bought the word for it modality directly, but it’s changing perhaps the receptor. So indirectly, maybe a second or third mode of action. It’s implementing Is that correct?

Dr. Julie Buckley:

That’s right. That’s right. Okay. So it has a far-reaching effect that is not directly just because of being CBD.

Vaish:

So this question of Have you tried CBD isn’t just people like throwing out a question it that actually has value.

Dr. Julie Buckley:

It does have value and it’s just you know, it’s funny I, I always give my son credit for the fact that I’m willing to talk about CBD that we use CBD in our office because was many years ago when the question of medical marijuana, which is a completely different thing, and we will I’m sure talk about that came up for a vote in the state of Florida. I voted no. And I was like, I don’t want anything to do with that I don’t, I just don’t want to be that person. I don’t want these. I was so misinformed. And my son looked at me and said, You are wrong, and you need to do your research. And I was so taken aback by that. And he had reached an age where I thought I owed him the respect of actually listening to him that I actually stayed home from Disney one day, they all went to Disney, and I stayed home on my computer. And when he got back that night to the hotel, I looked at him and I said, I stand corrected on CBD. I stand firm on my stance on THC, but I stand corrected. And that was the point at which we started using it in the office. And it turned out to be one of the most incredible tools I’ve ever had in my practice.

Vaish:

That’s amazing. And we’ll definitely come to both the question of medical marijuana and THC in this conversation both, which are very interesting and confusing to me at least. So are there a few? I know, you said that it could possibly work for everything. But are there a few specific conditions that come to mind where you’d be like, You need to try CBD first before you go anywhere else?

Dr. Julie Buckley:

Yes, I think so. But it is something that I use early on in almost everybody with this on the autism spectrum. Right. So if we go back to the conversation, the first conversation that we had when we talked about what’s wrong a little bit with autism, it’s not just it’s not medical, it’s not a mental health issue. This is a physical illness that has an awful lot of things that are wrong. Well, one of the things that we know is is is a problem in most kids with autism is that their immune system is no longer in balance. Right. So so when I say in balance, you know, I visualized the immune system as being sort of like that upside-down Bosu ball and your job is to keep that Bosu ball up and not to let it tip to one side or to another side or to another side. And what happens in our kids is that their immune systems very often are tipped and the primary place we see that tipping is in the world of autoimmunity and allergy and that sort of thing. And CBD is amazingly immuno-corrective.

I like immune balancing, it restores that Bosu ball into it’s its sort of upright and ready-to-go kind of position. And so the other thing that CVD does primarily one of its big impacts is that it’s neurologically so incredibly helpful. And the way it’s incredibly helpful is that it is incredibly anxiety relieving. It’s got a real influence on glutamate and helps to get glutamate under control. It’s got a real help with just anxiety reduction. And so one of the things that I reached for is I reached word early with my kids with autism because there’s so much trouble with their, with their immune systems. And especially we see this with kids who have not just autism but also have pans and pandas. And so you know, it’s interesting, one of the things that really convinced me you watch kids do better and be better and feel happier and all the rest of it and be able to function so much better when we started introducing some CBD. But what happened, which was fascinating to me was that when I had when COVID hit, and all of our kids got sent home from school and the world was just upside down. And there was so much anxiety. I increased CBD, you know, increase the dose a great deal for many, many, many of the children that I was working with. And what was fascinating was six months later when it was time to draw blood again. Everybody’s Panthers titers had profoundly decreased. Oh, wow. Yeah. And so, oh, this immune corrective thing. I’m actually measuring it. That’s kind of cool.

Vaish:

And corrective means that regardless of which side whether you’re under or overactive, it’s bringing it into balance, Correct.

Dr. Julie Buckley:

That’s why I like to use that word, immune corrective or immune balancing because it’s not always that it’s not just that it’s tipped one way and I need to tip it back to normal. It’s bringing the whole system back into balance. Correct?

Vaish:

Okay, awesome. I have several things that come to mind. I just want to quickly share that. I didn’t know about the glutamate that it balances glutamate for. We only started using CBD for sleep for my son. And he was just having this situation where he was unable you could tell that he was really, really tired. He wanted to sleep, but his eyes were in charge and his brain couldn’t turn up. Then with just a little bit of dietary kind of detective work. And I was thinking I mean, I’m a nutritionist. I thought I was doing great. It turns out we were doing a lot of fermented foods and a lot of home called gluten-free, dairy-free Asian foods that naturally had free glutamate and I realized it was just a light bulb moment I’m flooding a system with both histamine and glutamate. We went on a low glutamate diet and added GABA and it helped. But I do realize that when we added CBD the effect was significant. I didn’t make that connection. I thought it was a separate process. But I realized now maybe it was the glutamate who knows? So well.

Dr. Julie Buckley:

Yeah, and the other thing that’s also a true statement is that CBD has an action on that GABA receptor. I see. So if we potentiate things like GABA and that kind of stuff, so yeah,

Vaish:

Absolutely. Yeah. And I had tried CBD before for sleep for him, but at a much lower dosage than I think it was like. I mean, I’m sure the dosage is different for different people, but I was doing 12 milligrams or so at just told CBD at night, when I moved to more than 25 milligrams, the effect was immediate, there was no effect or good nor bad earlier, and then later there was an effect, then can you talk to us about the dosage of CBD? Seems like there’s a threshold where things start working, but I may be wrong.

Dr. Julie Buckley:

So it’s different for everybody. And the truer statement is that it is very, very difficult to overdose on CBD alone. Oh, right. So it is very, very difficult to overdose it, and alone being the keyword.

Dr. Julie Buckley:

Yes, alone being the keyword. So here are things that do happen that are negative when the CBD is an oil base. Sometimes children do not tolerate those oils well. And that will lead to bellyache and maybe some quote side effects. It’s a negative but it has nothing to do with the CBD. Then if there is a lot if there’s THC, in the product, that can be problematic. THC is something that is psychoactive whereas CBD is not THC is something that makes us feel a little bit like we’re losing control. That is a horrifying experience for most children who have autism who already have trouble with motor planning and controlling their motor output. I see. And so it’s very interesting. The people that I work with and the families that I work with have a tendency to be very anxious moms and dads and kids.

They have a tendency to be a little bit on the OCD side and a little bit of a controlling freak kind of thing. You know, I’ll own that you know I do. And the THC because you feel like you’re losing control. Most people that I talked to didn’t like the way they felt when they were using THC. CBD is not psychoactive and doesn’t have that same experience for folks. So it is when it’s CBD alone, we’re very, very, you know, it’s usually quite fine. Now there are a bunch of what we call terpenes. Those are other cannabidiol besides just CBD. So this would be your CBN CBG CDA. So there’s just the whole alphabet filling up and they’re all naturally occurring. They’re all naturally occurring. Yes. And some children do very well with those terpenes and get an added benefit from those without THC. So there’s CBD and isolation first there is CBD with its terpenes second, and then there’s full spectrum CBD that includes all the terpenes plus THC.

Okay, so if you think about it that way, I think it’s a lot easier to understand what we’re dealing with here. So when there are some people who don’t do well with terpenes and if we isolate them out and give them just the CBD, we find that it actually works very, very well. There are people who do better with their terpenes added. Then with the CBD in isolation, I generally don’t use THC, with the exception of patients who have cancer or if I am trying to control refractory seizures, because there is some science on the added benefit of some THC potentially eating the CBD in those situations.

So I’m a little more comfortable with that situation using some THC. But I tend to keep in, in, in CBD kind of the quantities I tend to, I tend to use only a full spectrum CBD. So,  So I think that that’s a very important thing to understand and to be able to differentiate. Now if I may. That leads me to the question of what is CBD versus what is medical marijuana? I just had a patient earlier today who I broached the idea of CBD and you could see Mom bristling and you don’t do drugs or not, you know, and I said before you even get started, let me tell you about this.

Right. So I think it’s very important to understand this. What’s the difference? And in what is you know, why do we call one thing marijuana? Why do we call it medical marijuana? Why do I need a card for that versus what is CBD right? So I think I always go back to what did nature intend and what God intends, right. And so, there are three species of cannabis plants, one is India one is Sativa.

The other one is something I can’t remember the species. But there’s, there’s three of them. And when they grow the way nature intended outside, in just the air, doing their thing, these plants grow to be huge, and they’re very Leafy. And they’re very stunning. And there they’re just there, they’re huge plants and their green leafy plant matter, which we probably would have when we were outside naked running around 24/7 the way God intended, we would have been eating some of this as well. If you bring those plants inside, you grow them it’s certain to grow light frequencies and certain fertilizers and this many hours of the day and this many hours of that this much amount of that.

What you do is grow a much smaller plant with many fewer leaves but a lot more flowers and buds. The THC is in the flowers and buds. So that is what makes something marijuana. When it grows outside in nature where it just becomes leaves and leaves and leaves and leaves and leaves. It is CBD it is hemp. And the difference is this one is you know, CBD comes from hemp and medical marijuana is where you get so much more THC. What is ridiculous is to grow a plant from marijuana and then try to extract CBD from it. That’s a waste of time and money. So what’s very interesting is that since 2018, plants that have grown as hemp has been 100% legal. All across the country. You don’t need a card, you don’t need anybody’s permission. You don’t need anything special. If it’s a hemp-derived CBD, it’s 100% legal when you need a card, or there are questions about licensing and it varies from state to state is when we’re talking about medical marijuana, where the plant was grown in a hothouse basically, for and bred for its THC content.

Vaish:

So basically the hemp plant and the hemp, it is a plant that is giving us CBD oil. So the same plant that we’re getting our hemp seeds from and so on. And however when that is grown in a more artificial or, I don’t know if that’s necessarily artificial, but an environment for marijuana the nature of the plant changes the growth of the this is typical for many plants, but this is how they’re specifically cultivated for marijuana.

Dr. Julie Buckley:

Exactly. And so that’s the difference. And that’s an I think that’s an important thing to understand. So scientifically this hemp plant is going to give us CBD and it’s going to give us what we want, there’s a trivial amount of THC in those plants.

Vaish:

Now and that is part of the whole plant CBD.

Dr. Julie Buckley:

Now, if we then take it to the next level, then I was told by somebody who was deep into this business many many years ago, that the future of this industry is in water-soluble products. So they have it’s it is it does end up being processed a little bit very, very safely because it’s generally speaking these are people who are all about nature and all about doing things as naturally as possible. So generally speaking, you’re going to find things as clean as possible. But you can nanoparticle eyes, that droplet of oil until it becomes so small that it is in fact water-soluble. And when you do that, you’re also able to fractionate out CBD alone. CBN alone CVG alone THC alone and that allows you the tremendous leeway to make products that has a very specific activity. And this is what’s happening in the CBD world now what is what they are doing is beginning to research.

Okay, well, what does this specific CBA what does it seem to specifically be helpful with? Is there something and then what happens when it’s in combination with and so this is where we come to where you can get CBD in isolation where there’s nothing else in your product, or you can get a broad spectrum that is THC free? Or the full spectrum that it has all of these terpenes plus the THC in it. So I understand

Vaish:

No, I think so that’s why we’re seeing CBD for sleep and CBD for energy and all that sort of stuff. Right?

Dr. Julie Buckley:

Right.

Vaish:

So I was wondering about that because we have one of those sleep-specific formulations. So perhaps they found a terpene. That is that is more. They have CBD plus that particular terpene. That’s helpful in sleep.

Dr. Julie Buckley:

And it is possible. I don’t know if this is the effect, but it is possible if it is still an oil base, and it is still a whole plant product. And the THC that is in it. There’s a difference between the Sativa brand, the Sativa species is generally meant to be something that is less sedating. So if you know and I don’t know that as I say, I don’t know this to be the be effect but my suspicion is that if something is designed specifically for sleep and it is still oil-based, it is using the indica species, which is much more likely to make you sleepy and be sedated. The Sativa is less likely to do that in terms of its THC, and CBD and isolation are never sedating. Never.

Vaish:

I see. Okay, that makes sense. I’ll give you.

Dr. Julie Buckley:

The munchies. It won’t make you sleepy. It doesn’t make you high. It’s not psychoactive.

Vaish:

Dr. Julie, the one biggest question that I’ve seen parents struggle with, and I struggled with it too, when I when I’m meeting clients is where to start? Because like you said, I often asked this question myself have you tried CBD? And then people will ask How should I try it? I don’t have an answer to them. Because with me and my son, we figured out a rhythm, we’re kind of you to have an intuition on where to start with your child and most parents will develop that but as a practitioner, so I’m then I ended up looking for practitioners who are fluent in the CBD language. And even so not many people, so far have been, you know, willing to give specific doses, how can parents start? So now let’s say they have a child who’s really having aggressive outbursts, maybe there are pans or pandas going on? How can they start?

Dr. Julie Buckley:

So it’s the same rule we use for everything, start low, and then go slow, be willing to increase, right? So generally speaking, you know, I think that even when people use an oil base, so the thing that’s cool about a water-soluble product, is that one milligram of water-soluble may be more like two to five milligrams of something that is oil-based. So you get a lot better bang for your buck with a water-soluble product. But even if it’s an oil-based product, generally speaking, you know, people who are so cautious, and they don’t know what to dose. And it’s very confusing because you’re doing based on your hand or you dosing based on your CBD because these guys label their products at stream every way under the sun, right? So you know, you’ll buy a bottle, it’ll say it’s got 1000 milligrams, well, there are 1000 milligrams and you’re 30 milliliters, then you have math to do, is there 1000 milligrams of CBD or is there 1000 milligrams of hemp extract?

So what you have to drill down to, and what you have to be able to understand as a parent, is how many milligrams of CBD are there in each milliliter or each capsule or each gel cap? That’s it and that way, you can then begin to compare apples to apples. So it really doesn’t matter how many milligrams are in the bottle, it matters how many milligrams are there per milliliter or per capsule. And that way you start to go, oh, that that’s not actually cheaper. It’s just way less CBD available to me. And so I think, you know, even in tiny, tiny people, you know, the foreign five-year-old kiddos, I’m not even remotely afraid to start with 10 milligrams a couple of times a day, sometimes three times a day. Not I wouldn’t even blink. And then if nothing happens, also, it’s not a negative, if nothing happens, give more, give more, the effect of CBD is very, very quick. You can almost use it for rescue. When there’s when, when there’s a temper.

Vaish:

Within a few minutes, then yeah, especially if it’s a water-soluble product. And if you’re like directly instead of a capsule, you’re doing it orally, you should maybe see it soon.

Dr. Julie Buckley:

Yeah, very, very quick. So, you know, it’s very helpful in the short term, and it’s very helpful very quickly. But, you know, I said to this family that I had in here this morning, my goal is always to have there be no anxiety, I don’t want to be responding, I don’t want to be reactive. In terms of anxiety, I want to be proactive, I want there to be joy, I want there to be it’s easy to go places and do things I want there to be I can try. And it doesn’t, it’s not anxiety-provoking, if I try something new, that’s the goal here, you know, so that it’s and that should be achievable. Even if somebody’s nonverbal, you should be able to, Hey, come on, let’s try this, here’s what I’m gonna get, here’s what we’re gonna do.

This is how it’s gonna work. Okay, let’s go for it. So. So, you know, and I am much more aggressive, I use only water-soluble products in my office, we private labeled something several years ago working with a company very specifically. And I was I I’m deeply appreciative for them coming along, for the ride of consistency and dose, and always having certificates of the assay. And being very, very committed to the pure products. And we have a product that is water-soluble, and generally in ours is in a capsule, we do have powder forms as well, because of course, there’s a cost to putting something in a capsule. So if a child is still using, opening all the capsules, it’s easier if we use a powder.

I will generally speak, start almost everyone off on 20 milligrams twice a day of a water-soluble product. And I don’t even blink about that. It because I’ve got so much experience now that when I’m dealing with somebody that I know has anxiety that I you know, whether they respond with stimming, they respond with NCDs they respond with, you know, just repetitive behavior or avoidance behavior that any part of that fight-flight or freeze anxiety response. If I see that at all, it’s gonna take at least 20 milligrams twice a day, to be able to get them there. So,

Vaish:

You know, sometimes then if you don’t get it, you keep increasing until I see. Okay, yeah!

Dr. Julie Buckley:

It was very interesting because my daughter, my poor daughter has no privacy. And she just doesn’t anxiety is the biggest thing that she still deals with. I mean, she’s 23 years old now. She’s, she speaks very, very well. We just got invited to go back to Carnegie Hall with our church choir again. Oh, nice. Yeah, in November. So we’re going again, she will ascend twice in Carnegie Hall. But we know she can go and do those things. But she still we’ve managed tremendous amounts of anxiety, in order for her to be able to do that stuff. And it was very, very interesting when COVID happened. And all of a sudden, we were in lockdown. And we were at home and the TV was on in my house and that kind of stuff. Her anxiety just went through the roof, even though her life was not appreciably very different. You know, we kept doing most of the same things that we were doing. She was still more anxious. And it was interesting because I had her on.

I think at the time, I had her on about 40 milligrams twice a day. And I was like, I’m not going to get I’m not going to survive this, either one of us is going to blow up. So I increased her to 60 milligrams twice a day. And that was obviously better. It was better. And then what I realized was that I was still getting pushed back on things and there were still times that she would sort of rant at me or she would persevere ate at me a little bit. And I thought we were still dealing with anxiety. So we talked about it, and I increased her again, from 60 to 80 milligrams.

The other thing I was hoping for was a little bit better seizure control because we still have a breakthrough seizure once in a blue moon. And deaths are horrifying experiences and I don’t like The so we went up to 80 milligrams twice a day. And she is a delight to be with at this point, I finally have her anxiety well enough controlled. She’s just plain fun. She’s funny, and she’s fun. And when we go to do errands, she doesn’t want me to come inside the store. I have her chauffeur, she’s going inside and taking care of it. She’s doing the grocery shopping by herself. She’s doing the returns. And she can go ask people and get things and take care of it now like she never could because I’ve got her anxiety control. So I was surprised at how much it took to help her have her anxiety controlled.

Vaish:

And this is just CBD. This is like what would you call a whole spectrum CBD.

Dr. Julie Buckley:

So actually, I have her on just the isolate. The next thing that I’m tempted to try is putting her on broad-spectrum and see whether or not I like that as much and see whether or not I need less dose or fewer milligrams if I add the terpenes in. So I’ve done that for her yet. You get a lot of magical behavior when you’re worried about seizures.

Vaish:

That is amazing. So you’ve gone to a dose that I probably would not have even thought of by myself. So So you said 80 milligrams or so and so there’s a lot of leeway to how much you could increase. Because my next question was going to be at what point would you think that CBD alone isn’t doing it, maybe I need to bring in THC.

Dr. Julie Buckley:

I’m still not going to be a big fan of THC. I don’t do that for kids with anxiety with maybe one or two exceptions. So I will try using a little and it’s still it’s only the THC that’s in a CBD product. So I do have a full spectrum product. And I do have one or two children who were very, very, very aggressive. And it was interesting, just that smidgen of THC, not natural naturally enough to get you high. But just it seems to potentiate the CBD just enough to make a difference.

Vaish:

So I have and this was part of what was naturally coming with the plant. It wasn’t added to the picture.

Dr. Julie Buckley:

Okay, all right. Yeah, I’m still working within the realm of just CBD. I don’t want to I don’t want to have to do the whole medical marijuana cards and all of the extra stuff that goes with that.

Vaish:

I’ve just that is so interesting. I didn’t even know this was an option. Because when I was I was the way I was thinking about this as a model was that, okay, you push CBD to maybe 30 or 40 milligrams, and then you start adding like 5% THC, 10%, THC, THC and so on. I was thinking like, I thought there was like a, like, it’s a little bit naive now to think about it. But I thought there was a percent THC to CBD ratio for every for, you know, for specific ailments.

Dr. Julie Buckley:

Well, I will tell you that many times, the manufacturers will tell you those kinds of things. And they have opinions, they have their opinions. And they are not always backed up by data. So, mine is no more than an opinion as well. But because this is we’re trying to get data I’m deeply, deeply intrigued. There’s an I have a like I said, a friend who has been deeply involved in this industry in a while for a while now who has a son with autism. And he and his wife are very, very interested in trying to actually get real, measurable data and try to see if we can suss out the differences in the British sense in order to figure it out to try to sort through what works best because at this point, I have a lot of clinical experience. And that is the data that I use, you know, in my experience, it’s worked this way and my experiences work that way. But you know, I have two young women who have intractable seizures.

One of them is taking 1200 milligrams of CBD twice a day, because nothing else has controlled her seizures as well. Now she’s on other seizure meds and she’s on a lot of other things as well. But just to give you like, and there’s no problem she’s not sedated, it’s not. She’s, it’s fine. And we have another young woman who’s also on very, very high doses like that, because the seizures are just out of control.

Vaish:

Anybody who’s thinking is or thinks that you were just dragging them that’s not the case because they’re fully functional and aware you’re they’re not. They’re not serrated, yeah.

Dr. Julie Buckley:

No, you can’t sedate somebody with CBD. It’s just not gonna happen.

Vaish:

Is there for somebody maybe let’s say there’s somebody that hypothetically needs only 20 milligrams of CBD for them if you overdid it. And let’s say we gave them 40 milligrams. But what might happen if you wait too much? That’s it, but you aren’t necessarily so the negative reactions are just THC, not not, when you’re doing a loan with CBD, there’s nothing.

Dr. Julie Buckley:

In my experience, you just really don’t see negatives with CBD. Unless it’s like I said, it’s an oil-related to the oil. It’s related to some other additives because a lot of people are starting to put other things in, hey, this is good. Let’s add this, let’s add then. Or if it’s this is a child who doesn’t do well with terpenes and would do Bettle better with what we call the ISO, just add alone.

Vaish:

So and that’s a very controlled way of doing it too. So just go with the CBD as much as you can and then maybe add the terpenes. And then if that doesn’t work out, bring the THC right. So that’s a nice controlled experiment.

Dr. Julie Buckley:

Yeah, I like it that way. It’s been very, very good because it’s helped me there are a few people who were using one of the oil-based full spectrum CBDs. And when we tried CBD, my isolette that was water-soluble, they did not do as well. And then I was like, Huh, okay, but if I give them broad-spectrum, not the full spectrum, they do great.

Vaish:

What that’s different, too. Okay, broad-spectrum and full spectrum. Right.

Dr. Julie Buckley:

So broad-spectrum is all your terpenes full spectrum is where we’ve got the CBD and the THC added. Sorry. Got it.Yeah.

Vaish:

Interesting. So thanks, Dr. Buckley. There’s so much I think I really got my CBD story. Sorted. In my mind, that’s really cool. Is there? Is there a, is there something you’d like to leave parents with who want to get started on CBD or who have experienced failure in the past?

Dr. Julie Buckley:

I think it is important to go back and understand that if it didn’t seem to work well, in the past, look at a dose and look at what products you were using and be willing to look at something and make sure that we’re getting the best bang for our buck. Often the lowest price is not even close to the cheapest CBD per per per milliliter. That’s the number one thing. And the second thing I would say is that I have become a very big fan of using the water-soluble product. I think it is just so much more cost-effective. And it’s so much easier, it doesn’t taste the way the oil-based products do. So that’s what we carry in our office. That’s what we carry in our store. And, and I am really proud of that product and how well people do with it.

Vaish:

So how can people access your store?

Dr. Julie Buckley:

that’s  www.HealthyUstore.com

Vaish:

Okay, that’s  www.HealthyUstore.com

Dr. Julie Buckley:

Okay, yep, there’s CBD on there.

Vaish:

I’ll put that in the show notes. Beautiful. Okay, thank you, doctors. Thanks for your time. And maybe now I know you mentioned h bar in the beginning. And now if that story is as interesting as this, I want to come back to that another time.

Dr. Julie Buckley:

It’s a great story too. I love that story.

Vaish:

Thanks for your time. Bye. Bye-bye. This episode can rightly be called CBD 101. Do remember to check in with a functional doctor or your PCP. If you have any questions about CBD. Now it’s important, but quite hard in my experience to find somebody knowledgeable in CBD and its therapeutic effects. I would love it if you could reach back to me and let me know if you do find such a practitioner. Other than Dr. Buckley Of course, so I can update my database. You can reach me at Weisz at functional nutrition for kids.com. As you leave me I request you to pause and leave a review for this podcast. You can do so now there’s a nice link for it so and that link is www.ratethispodcast.com/white Bye. Thank you for listening and see you next week.

92 Picky Eating and Down Syndrome – The Fundamentals with Dr. Kay Toomey

92 Picky Eating and Down Syndrome – The Fundamentals with Dr. Kay Toomey

Today’s episode is one of a kind – and expertly leads us into incredible detail into the physical and physiological principles behind picky eating and other feeding disorders, especially in children and adults with Down syndrome.

If that sounds complex, I assure you that while it is complex, it is not complicated. Dr. Kay Toomey, in this episode talks to us about postural stability and breathing and how they relate to feeding Delays, or disorders. 

I love it when an expert takes us back to the basics. We are often so busy looking for hacks to a particular issue that we lose track of the fundamentals. This episode is just that – a journey back to the very basics, so we can pick up what we missed and address the root cause of picky eating.

You can find Dr. Toomey at www.sosapproachtofeeding.com and you can find her freebie made just for you – a collection of Low Oral Motor Demand Foods at www.functionalnutritionforkids.com/feedingsos

Clicking on the above link will also give you an ACTION handout of this podcast.

 
Functional Nutrition and Learning for Kids | Listen Notes
 

 


Audio Transcript:

Vaish:

On. Today’s episode is one of her clients and expertly says in incredible detail about the physical and physiological principles behind picky eating, and other disorders, especially in children and adults with Down syndrome. Now, that sounds complex, I assure you that while it is complex, it’s not complicated. Dr. Kay to me in this episode talks to us about postural stability and breathing, and how they are so important when dealing with feeding delays or disorders. And she has done a phenomenal job of breaking it down. They love it. When an expert takes us back to the basics.

We’re often so busy looking for hats for a particular issue. What can we do right now for picky eating? What supplement can I have? What food can I change? Right? What therapist can I see and so on, that we lose track of the fundamentals? This episode is just that it is a beautiful journey back to the very basics so we can pick up what we missed. And address the root cause of picky eating and any other feeding disorder you may have. And this is specific to children and adults with Down syndrome. But I think you will find that anybody can benefit from the detailed fundamentals that Dr. Toomey talks about. You are listening to functional nutrition and learning for kids. I’m your host Weisz. And if you’re looking for a new approach to learning and nutrition for your autistic child or for your child with Down syndrome, you are in the right place. Listen on. Hi, Dr. Tomi Welcome to functional nutrition and learning for kids. And I’m so grateful and glad that you joined us today.

Today, our focus is on feeding issues and feeding disorders in children with Down syndrome, which I always think is a topic that’s often not addressed enough. So let me jump right in. What are some factors that you consider specifically when working with feeding issues or picky eating in children with Down syndrome?

Dr. Toomey:

So one of the things that make children with Down syndrome unique, of course, is some of the factors and features related to their medical genetic diagnosis. And, and the two major issues that we always need to be thinking about with a child with Down syndrome is the low muscle tone. Hypotonia, of course, is one of the defining features and challenges when we live with someone who has Down syndrome, of course. And then the second is that many of the children have cardiac issues. And that also can create some additional stressors, especially for very young infants with Down syndrome.

Children because of their low muscle tone with Down syndrome, oftentimes, you’re going to struggle with breastfeeding and bottle feeding. And if the baby also has cardiac issues, that is going to create kind of a double whammy for that child, because we know that one of the challenges from a cardiac standpoint is fatigue. And one of the issues, when you have a low tone, in doing any kind of motor task, is fatigue. And so the child who has low muscle tone and a cardiac issue are going to have potentially a double fatigue issue that they’re trying to deal with and trying to work with. So I think it’s probably best for us to focus on the low muscle tone is that’s going to be the majority of the population of children who have Down syndrome. And there are two major components of feeding that that tone is going to impact.

Many times people will think about it purely from a self-feeding standpoint and being able to get the food up to the mouth. But actually, it begins earlier than that with what we refer to as postural stability. So in talking about the body’s list of priorities, the body’s number one priority is not eating. The body’s number one priority is breathing. So if you think about the last time you had a really bad head cold, and you couldn’t really breathe and eat, you take a few bites of something, and then you can’t really breathe, your nose is stuffed or something. And so what do you do you kind of relax.

Then you take a few more bites, and then you have to stop and breathe some more. And about the third time, you do that you’re like, Yeah, and I don’t want to do this anymore. And you’re done. So we know breathing comes first. If you can’t breathe well, you are not going to eat well. And that’s actually why cardiac is a big having a cardiac issue is a big problem for children and causes feeding difficulties. Because while we don’t think about cardiac problems as breathing per se, what the heart does, of course, is the heart oxygenate the body. And, and so indirectly having a cardiac issue is going to impact the oxygenation of the body, it’s going to cause the child to not have good oxygenation, they’re going to have to breathe harder, they’re going to have to breathe more rapidly, because of that cardiac issue, and that’s what causes them to fatigue very rapidly as well. And so, so when you have the cardiac issue, you’re already going to be struggling with priority number one, which is breathing, staying well, oxygen oxygenated.

So for example, I live in Denver, Colorado, and so we’re a mile high. And so we have an issue with oxygen anyway, because of our altitude. But one of the things that’s very interesting here is we’ll have a child was born up in the mountains, so much higher, you know, in the mountains, and the child may come down to Denver because they were born premature or they’re having respiratory issues. And down here in Denver, we can get them transitioned off their oxygen, we send them back home. And to the mountains, where they’re several 1000s feet higher than we are in Denver, even though we’re a mile high, the mountains are much higher. And what we find is the child starts having feeding difficulties, they have difficulties with weight gain, the easiest intervention we can do with that child and with children who have cardiac issues is we actually can look at giving them blow-by oxygen during a meal.

The child actually will start eating better, and they’ll start growing better. Because by having pure oxygen in their immediate surroundings as they’re trying to eat, you enrich the environment or the oxygen in their immediate environment. And they don’t have to work so hard to breathe, and they don’t have to have their cardiac system work so hard to stay well option, oxygenated. And so you know, what we find is that when you struggle with your breathing, you increase your respiratory rate, when you increase your respiratory rate, you burn more calories because you’re burning more calories, you’re not going to gain weight very well because we’ve reached your respiratory rate, you’re going to fatigue more rapidly. So in the body’s list of priorities, breathing is number one, and not falling on your head is number two. I call it not falling on your head, because it’s really about the body protecting the brain, ultimately. So you don’t want to fall on your head.

What do you have to do? And what do you have to have in order to not fall on your head during a meal, but have good postural stability? And so postural stability is really the second priority breathing is the number one factor of stability is number two, as the priorities go. And of course, the low muscle tone for a child with Down syndrome is definitely going to impact that postural stability. So the poor child with Down syndrome, whereas both low tone and a cardiac issues is going to have problems with Priority One and priority two. But that postural stability is the one that we’re going to see most commonly impact the children who have Down syndrome. So the low tone, if, as you know, the low tone happens in the arms, legs, head, neck, and trunk is what we think about when we think about postural stability, that ability to sit in an upright stable position.

Now, after children sit up straight, most children on average are going to learn to sit at about seven months of age, depending on a child with Down syndrome level of low muscle tone. They may not be learning to sit until eight months, nine months, or 10 months. So one of the things we need to do is we need to always be thinking about a child with Down syndrome. How do we support their postural stability, from early infancy all the way into being an older child and even an adult with Down syndrome? We always have to think about postural stability. So when babies first start on baby food, we are going to put them in a slightly reclined back position. A swing seat is a good seat to think about feeding a baby with Down syndrome.

A bouncy seat is another option. And then there certainly are Adjustable infant feeding chairs where you can lean that baby back in a slightly leaned back position. And that actually would be my preference over a highchair. high chairs actually are not really constructed very well, to be supportive of children who have special needs. So an infant feeding chair, a swing seat, and a bouncy seat, would be a better option for families to begin feeding their child who has Down syndrome, you want the child to be leaned back so that their back is supported, and their head and neck are supported. And then they will be able to accept purees into the mouth from that position.

Vaish:

Are you saying that doctor to me because of number two, where you’re saying that postural stability is important that you’re saying when you’re in a highchair say then you’re a little bit more wobbly? So priority number two is not met is that what

Dr. Toomey:

so so when children first start spoon-feeding, we support their postural stability before they have good head control for the study by leaning back a little bit, okay. And, and, and one of the problems with high chairs is, and small infants. And many children who have Down syndrome are either born premature, so they’re small, or they’re born small for gestational age. So there’s Ma is that many of those high chairs, those big highchairs are too big. And, and, and the baby is kind of locked in that highchair because it’s too big. And that’s why a swing seat, an infant seat, or bouncy seat, or an infant feeding chair is going to be more than a highchair. What highchair manufacturers do the WHO adjust them so that parents can feed their children from infancy to however old they want them in the highchair is they have to make a high chair that’s going to fit the size of multiple children, right, and the size of multiple children as they grow up.

Children who have tone issues, really need to be put in the right chair, right from the beginning. And so of course, when we’re bottle feeding breastfeeding an infant, we’re going to be holding them in a breast or bottle-feeding position. But when we want to start doing spoon feeding, we need to be looking at when is the appropriate time to start it? And how do you know your child is ready to start those purees. And then how do we support them. For the most part, we typically are going to be recommending that puree started about six months. And that recommendation is in place in part because of gut maturity.

As well as the fact that there are certain vitamins and minerals that the baby gets from the mother in utero. And there are stores of certain vitamins and minerals, iron and zinc being two of the most important that are used up by about the time the child is six months of age. And so generally we want to introduce complementary foods around six months of age because children have used up that store of iron and zinc that they got from their mother when they were in utero. And, and so we need to think about that. The second major factor, so one is that maturity. So the one it has to do with is that you’ve used up your stores.

The third actual major thing that most people look at is the child’s ability to sit upright for about 10 seconds with good head control. So if you put your child in a seated position, they can sit upright for about 10 seconds with good head control without falling over. So they’re not sitting independently yet, but they have pretty good head control. Now the challenge is that most children with Down syndrome are not going to be able to meet that criterion. If you put a child with Down syndrome in an upright seated position at six months of age, many of them don’t have good head control, and they’re bobbing and they’re falling still. And so what we have to think about is how do we provide extra support for the child who doesn’t yet quite have the postural stability they need to start baby food purees and that is To be in that infant feeding Chair of bouncy seat, a swing seat, where the baby can lean back and have the back of the chair supporting their position.

Right. So sometimes even in that infant feeding chair, bouncy seat, or swing seat, the baby may collapse, right, right, the one side or the other. So, again, we have to think about how we provide extra support for that baby. So one thing to do is to take a hand towel, roll it up, and put it under the child’s arms, neck, to their sides in the chair, to give them extra side support, some trunk support, and that will help the baby not do that collapsing to one side or another. And so we just take a regular hand towel, roll it up into a tubular shape, and then put it right down the side of the chair. To help keep the child in position. What you’re going to see is that at some point, when the baby gets better had control, chest control, poor control, when you’re spoon-feeding the baby in this position, they’re going to start doing what we call baby situps. And they’re going to start and they’re going to start pulling themselves forward. Because they sit up more straight. That’s when you know, it’s time to put them in an upright seated position. Because the baby is now demonstrating to you that they have enough core, chest, neck, and head control that they want to sit up, right, sit up straight.

For most children who don’t have Tony’s shoes, that’s going to be around seven months of age or so we start feeding typically around six months. In that back, leaned back position, and about seven months, most babies are going to be ready to sit in an upright position. Again, with children who have Down syndrome, depending on how low their muscle tone is, it’s likely going to be closer to eight months or nine months or even for some children 10 months before, they’re going to start really demonstrating that they can sit upright independently with good control. So you would continue to make sure they’re supported in that slightly leaned back position.

Once your child sits upright, once children learn to sit upright, then we need to support them in what we call the 9090 90 positions. But that means we want to have in their seated arrangement 90 degrees at the ankles, which means their feet need to be grounded on something 90 degrees at the knees, and 90 degrees at the hips. That’s what we’re looking for a 9090 90 position.

Vaish:

Does that position hold for older kids and adults as well?

Dr. Toomey:

And adults, you and I should be seated in a 990 90 position. That is the correct position for all of us. Those of us who spend all day at our desks seated in a chair. Part of the reason why we end up with back issues and IP issues is that we’re not seated in an appropriate 9090 90 position. I am an adult because I’m kind of on the short side. I actually sit in my desk chair with a footrest under my feet to get me in the correct seated position so I can type on my desk.

Vaish:

Because I’ve been seeing my son try to find a good foot position and he’s also five foot one inch. So I think he’s just not getting that 90 In his right feet. Yeah.

Dr. Toomey:

Right. So So if you think about it, one of the things that that that you see, for example in a highchair is that when you put a baby who can sit upright in a highchair, their feet are nowhere close to the footrest. Their feet kind of dangling out there. So I want you to do an exercise with me. Okay. You’re the people who are participating in this podcast, watching this podcast, do this exercise as well. The first thing I threw together, we’re gonna sit up straight. I want you to sit up straight with good posture. And I want you Just think about what did you just do to sit up straight with your good posture? Well, what most of us do is scoot our hind end to the back of our chair, suck in our belly muscles, pull up our chest muscles, and put our feet flat on the floor. But what happens if you don’t have the ability to put your feet flat on the floor or flat on the footrest. So in a high chair, for young children,, the footrest in a highchair doesn’t ever let them put their feet flat. So so it’s not an appropriate tool on a highchair? Or in an older child, when we put them in an adult chair. Their feet are dangling in the air.

Vaish:

Right. So we still dangle Yeah,

Dr. Toomey:

Yeah, sit back up, right for me. And I want you to pick up your feet off the floor. And we’re going to pretend that our feet can’t hit the floor. Now, this is going to be a little artificial, because we have our feet out in front of us, right, and we’re using a lot of thigh muscle here.

Vaish:

I’m pretty short. So it’s okay.

Dr. Toomey:

If your feet can’t hit the floor, think about how much more effort it is to maintain your core strings. And to keep your body in a nice upright position. Now let’s pretend that we have low muscle tone, like a child with Down syndrome. So one of the things if I have low muscle tone, is I’m going to slouch a little bit, right. And one of the things is that if I’m slouching, and I’m on a slippery surface like most chairs are that don’t cloth on them, is I’m gonna start wiggling around, I’m gonna start flying. Yeah, one of the things you’ll see, children who have low muscle tone do is try to cheat or compensate by using their joints to do the work of the muscles, because their joints are going to oftentimes be stronger than the muscles which have. So if you sit up, right, bring your feet up off the floor for me, I want us to pretend that we’re going to lock through our hips, there are two things you might see a child do, they might lock forward. And so they have a big kind of bow on their back.

So they might walk forward. And in this really locked forward position, I want you to notice how your jaw and your mouth juts forward. And now I want you to try to chew. And I want you to take a dry swab. And see how uncomfortable that is. So most of the children don’t lock forward in their hips, but you’re gonna see most children do is they locked back in their hips. And if you push your hips forward in your chair, what’s going to happen to you, you’re going to slide down out of your chair. So what happens then is children who have feeding challenges, what you’re going to see is they are going to be really uncomfortable sitting in an adult chair if they don’t have good foot support because they’re going to try to compensate for their low tone by locking their hips. And that’s going to make them get in an incorrect position for eating.

Now, what some children do is they figure out, well, I can’t really lock through my hips very well. And you’re gonna see some children locks through their shoulders. So if you’ll take your feet back off the floor for me. And we’re going to slouch through our belly, like someone with low Tom. And now we’re going to compensate by locking our shoulder blades back. So you should feel a little more partially stable. But now I want you to try to feed yourself. Yep.

You can’t feed yourself if your arms and shoulder blades are locked back. So if you ever see a child in a seated position, who has their shoulders locked back, and their arms kind of up, it’s because they’re having a problem and not being pastorally stable. So that’s another issue. Now the third way that children experience problems from seating or when they have is if they figure out they can’t walk through their hips. They can’t lock through their shoulders and feed themselves.

The only place they have left to lock is the head and neck. So I’m going to have you sit back again. Take your feet off the floor. This time we’re going to slough pure our bellies and I Have their shoulders. And we’re going to try to compensate and make ourselves more stable by using our head and neck. So you could pull back, you could lockdown, you can lock up, you could chip to the side. So whichever position feels more stable to you get in that position. And now I want you to chew again, and take a dry spot. All right, and now we can put our feet on the floor. So when we don’t have good stable foot support, when we’re not grounded, what happens is our body tries to compensate. And it’ll either compensate, if I don’t have good foot support, oh compensated the hips, the back, or the head and neck. All of those compensatory actions are going to interfere with you being yourself and interfere with your ability to swallow properly. So that 9090 position is absolutely key. And the most important piece of the 9090 90 positions is the footrest.

You have to ground the feet, you need that 90 degrees at the ankles. Now, what we recommend, after an infant feeding seat, is it possible that the family will purchase an adjustable wooden chair? Now we know that those adjustable wooden chairs are expensive. We recommend you go to eBay, you go to overstock.com. You go to the variety you know, my good neighbor, the various kinds of websites that are parent exchange websites, right, where you can ask for, are you using your wooden chair anymore, and people will send stuff to you, right? The adjustable wooden chairs are key, because you can move the footrest and the seat and you can adjust those from the time the child is nine or 10 months when hopefully, many children with Down syndrome would be able to sit upright, and sit in that adjustable wooden chair all the way up to nine to 10 years, or even older, some of those adjustable wooden chairs. You can sit in them until you’re about 100 and sometimes 100 150 pounds.

Vaish:

Did somebody I interject with a question? Yeah. So I don’t know if we’ll have time to talk about pureed eating. But what you said made me think about if a child is lacing and all of these different positions that you mentioned, tightening, whether it’s their face and jaw, or their shoulders or their hips. And so you, you talked about how each one of them got in the way of chewing and swallowing. So if that pattern is said, and then nobody’s aware of that pattern, could that potentially lead to a child maybe not progressing into chewing harder foods?

Dr. Toomey:

Absolutely, absolutely. If you do not have a good foundation, if you don’t have good postural stability, you are not going to be able to chew well. And, and so that’s why we recommend for all of those children who have Down syndrome is that once they’re sitting upright, and they go into those adjustable wooden chairs, you just have to make sure they’re adjusted correctly. So he has to drop over the front edge of the seat. And you want the seat to be supportive, have as much of the thigh as you can. And that. So you have to adjust the seat up and down but forward and back as well. The footrest as well. You need to make sure you have the footrest adjusted. So the child can put their foot flat at that 90 degrees on the footrest and the foot rash far enough forward that the whole foot can rest on the footrest and you want the seat far enough forward that the whole thigh is supported. But you don’t want the seat so far forward that the child can’t get a 90-degree angle at the knee. And then hopefully you’ve got 90 degrees at the hips.

The other thing we recommend is to get some of the no-skid matting that you would put under your carpet to keep your carpet in place or the kind of shelf liner that’s the squishy, rubbery stuff that you might put in your kitchen drawers to keep your utensils in place. Keep your glasses someplace, and you want to cut a piece of that out and put that on the seat of the chair. Because the child is going to compensate for low tone, what we want them to do is actually lock at the hips. And when you put the no-skid mat on the seat of the child’s chair, it makes their little rear end, stick to the bottom of the chair to the seat of the chair. And, and it lets the child walk through the hips, and free up the upper body and the head and neck to be able to eat better. So those are the things that we’re going to want to do. So all the beading begins from the foundation of good postural stability. After the child sits upright, it’s that 9990 positions, and that is going to last throughout their entire lifetime. And as we know, many people with Down syndrome are short, in height, right?

My sister-in-law, I think, barely made it. Five, two. And so you know, when when you’re only five, two, and you sit in adult chairs, your feet don’t hit the floor. Think about as an adult, the last time you went to a bar or restaurant that had a tall top table, you got this stool that had no rungs to it? How uncomfortable is that? What do you do as an adult? Well, don’t you start by swinging your feet? And then you start squiggling around trying to find a good place and then you’re leaning on the table. Now on the back of the chair, you know when you put a foot up, and this is why children wiggle and squiggle at mealtimes. If they don’t have good postural stability, they’re not going to sit upright and they’re not going to sit still. You only have so much motor brain available to you at any one time.

Vaish:

That’s interesting. I’m just going to have you repeat that you said you only have so many motor graders.

Dr. Toomey:

Yes, you only have so much motor brainpower available to you at any one time. So if you’re using up all your motor brain power, to make sure that you’re not going to fall on your head, you’re not going to have the motor brain power, you need to make your mouth work correctly.

Vaish:

So it’s like a seesaw. So if you’re putting into postural stability, you’re taking away from chewing?

Dr. Toomey:

Exactly. Yeah, yeah. And I think about it like that domino effect, right? Is it or think about it is, you know, a series of steps you have to accomplish in order to get that step. If you don’t have good postural stability, you’re not going to be able to make your mouth work correctly. And that’s a huge issue for children with Down syndrome that most people are missing if you get the child postural, the stable, you put in the correct support. So your child can sit upright, and maybe it means you’re going to still have to build side supports, those adjustable wooden chairs don’t have side supports, what we do is we actually velcro yoga blocks to the seat on the sides of the child to give them side support. Oh, that’s nice. That’s yeah, yeah, we just take doubles, sticky Velcro. And we just Velcro yoga blocks on the sides of the child to give them that extra practice for once you have them partially stable. Now they can focus on making their mouth work to advance from purees. But this is going to be one of the major reasons why children with Down syndrome do not advance to the next stages of food.

Vaish:

Because they haven’t established that postural instability is really stable. And this can happen with older kids too. And regardless of you could be I mean, you’re right that typically heights tend to kind of maybe it’s more likely that even an adult is is is shorter in height than somebody else. But regardless of that, you could still be partially unstable.

Dr. Toomey:

Correct? Correct. So the best thing you can do to support any child who has Down syndrome is to get them in the 9090 positions regardless of their age.

Vaish:

And I’m going to go in a foot dress for my son, right after this.

Dr. Toomey:

Yes.

Vaish:

Thank you, Doctor, I think this was this this this you came in from the perspective of a child but I mean, like but what you’re saying is, I love the I love that the two top priorities I had before I read your work, I’d never heard about the fact that breathing was the first priority and postural stability or not. falling on your head is the second priority. And you’re saying that unless these two are addressed, there’s you’re really not going to see much progress in any form of feeding or chewing. Yeah, any form of feeding. And this may even manifest as picky eating but may not really be picky eating.

Dr. Toomey:

Right, exactly. And when I don’t have good respiratory, when I don’t have good postural stability, I’m going to want to stay on the easiest textured foods. So I drink my calories because I can suck those down, and clear them out of my mouth quickly. Or I’m going to want a puree that’s just going to slide down quickly and not take a lot of effort.

Vaish:

And so eventually becomes a pattern that is hard to break. Right?

Dr. Toomey:

Absolutely. Because then you’re not laying down brain pathways to learn how to eat other foods, either. Because if somebody tries to give you textured table food, and you can’t manage it, then what you have is an aversive learning experience where you have tried something and it didn’t go well.

Vaish:

So so we really have to think about how do we physically support the child with Down syndrome first, and when they have good head control, and we feel like they’re doing okay, with the pure age, we do need to start introducing other textures to build that sensory tolerance, and at the same time, build the stability, right.

Dr. Toomey:

Because they are going to need to put more effort into learning how to chew because have low muscle tone. So low muscle tone isn’t just in your head, neck, trunk, right arms, and legs, low muscle tone, is all the entire GI tract, and gastrointestinal tract. So your gastrointestinal tract starts from the tip of your tongue, all the way out to the bottom of the anus, right? That is, and it is a muscle, right. And so if you have low muscle tone in your arms, legs, head, neck, and trunk, you’re going to have low muscle tone in your GI tract. And so that means that your tongue may not move correctly, you may have difficulties getting the food, specially textured food, to move down the esophagus with the correct muscle move movement is what’s called peristalsis, you may have problems with the sphincter muscles in the GI tract, so the valve or sphincter at the top of the stomach may be a little bit loose. And so these children can have problems with gastroesophageal reflux because that valve at the top of the stomach that’s supposed to keep your food in the stomach is loose.

Food comes up into the esophagus, that’s what we call reflux, it could be that the valve at the bottom of the stomach is loose. And so you’re having a hard time getting the valve at the bottom of the stomach to close correctly, to keep food in the stomach, so you can digest it correctly. Because after you finish eating, you have to have the valve at the top of the stomach, close to the valve at the bottom of the stomach close so that you can digest your food because there are muscle contractions as well as enzymes and other kinds of things. And then you have to be able to open that valve at the bottom of the stomach, release the partially digested food into the intestines, then your intestines have to have good motor muscle peristalsis to move the food all the way through the rest of the system. So that you can take out the nutrition you need. And to make sure that you can eliminate the waste. So one of the things we know is that people who have low muscle tone have problems with constipation.

Absolutely yes, because they don’t have the muscle tone to move the, you know, bowel waste through the large intestine and out correctly. We know that when you’re constipated, that actually can cause you to have a poor appetite. And if you’re constipated severely enough and backed up very far into the large intestine, it can actually cause vomiting as well. So, the low muscle tone is going to have this domino effect beginning with postural stability and also then impacting digestion and then also impacting the Tao waste removal and potentially creating constipation, which then cycles back if you don’t have an appetite and creating all sorts of issues.

Vaish:

Right? So it is definitely, there’s a huge cascade of muscle tone. So there are so many areas, there’s actually the outward physical area that inward, it’s also physical, but it then becomes physiological as well and eventually becomes biochemical. There’s, there are so many areas, thank you, thank you for your actually such in-depth and intense knowledge, I’ve made two pages of notes I wrote down so much this is so beautiful. How can parents of parents reach your doctors from your work with you or your organization?

Dr. Toomey:

So the best way to reach us is through our website. And that is going to be www.sosapproachtofeeding.com.

Vaish:

Can I link that in the show notes?

Dr. Toomey:

And one of the things that I’ve done for your participants is I’ve created a set of recipes, which is what we call low oral demand. Rest, I love it. Yeah, so they’re high in nutrition, but they don’t require a lot of heavy duty to do it. Because the jaw is a muscle, and the tongue is a muscle. And to chew correctly, you have to first use the tongue to move the food between the G. And then you have to be able to chew with enough strength and a rotary pattern to break up the foods to get the nutrition out. Right. So one of the things you’re going to see with children who have low tone is they may be swallowing food that is not fully chewed up. And what happens is that digestion begins with chewing. And so if you don’t chew your food up all the way, sometimes the food can’t be properly digested.

So what if parents are seeing full food in their child’s bowel movement, that’s a problem. Because what that means, if the food looks the same coming out the back end, as what it went in the front end, it means the child exerted all that effort trying to digest that food, and they got nothing out of it. And if you are having full food, in your bowel movements, you are going to have an issue that also contributes to constipation. So not only did you not get any of the calories from that food, you burned calories, trying to digest that food, and it’s made you constipated on top of it. And so now we have a whole nother layer if you can’t chew properly, on a top solution. So at this point, we probably want to think about a talk about how to help support children chewing and how they learn to chew. But in the meantime, this set of recipes will give your podcast followers some lower oral motor-demand foods that hopefully their children can manage more easily, that have better nutrition in them, and will be easy to digest as well.

Vaish:

Thank you for taking the time to create that handout and you know, sharing it with all the listeners I know that you know it’s super valuable. Thank you so much doctor to me. And I know that there’s you have so much I feel like I could take every one of the things that you said we could make that a completely different podcast, I definitely want to want to talk to you again, whenever you have a chance. Let’s there’s just so much it’s I thank you for all my heart for all so much that you’re sharing with our audience.

Dr. Toomey:

Let’s have people start with a good foundation. Yes. And think about how do we build on that foundation? Absolutely.

Vaish:

I think this is a good first place for your families to start is build a solid build foundation and back up to what’s most important and what’s most foundational.

Vaish:

What a phenomenal podcast right now I’ve put together Dr. Toomey’s freebie on my website and that is functionalnutritionforkids.com/feedingsos okay. And this is her freebie made just for you which is a collection of low oral motor demand foods. Again, it’s functionalnutritionforkids.com/feedingsos  I’m working on a pamphlet that will have a summary of all the strategies that she mentioned. We will have a one-page action sheet to take from this podcast. This will be available by Sunday evening May 8, 2022. So today is the day the podcast is being released May 6. So if you check the website before then make sure to check it again. So you also get the action handout. Thank you for tuning in and bye.

91 Light is information for your child – with Roudy Nassif

91 Light is information for your child – with Roudy Nassif

What information does LIGHT bring to your child? Can artificial sources of light actually lower attention and cause dysregulation? Can you hear light?

Roudy Nassif, founder of VivaRays, and all-round light wiz leaves us with a lot of really new information about how light influences every body system we have and leaves us with 3 tips to use light to our benefit (and our kids’ benefit)

  1. Go outside and witness the sunrise for at least 15 mins.

I just started doing this, and I can attest that I feel a lot more energetic in the mornings.

Listen on for more of Roudy’s insights on attention, light, sensory overwhelm, and regulation!

You can find more information at http://www.vivarays.com/

 

Audio Transcript:

Vaish:

What information does light bring to your child? Can artificial sources of light actually lower attention and cause dysregulation? Can you hear light? These are the questions that the amazingly articulate and light Roudy Nassif talks about in episode 91 of functional nutrition and learning for kids. I’m your host vice, you know me. I’m a mom to a nonspeaking autistic teen with Down Syndrome and a neurotypical preteen. And I teach families how to use nutrition and learning strategies to get on track with their education goals. And I’m here to help you take the next step in guiding your child towards emotional regulation, body comfort, and equal education. Stay tuned because about halfway through this episode, Rudy talks about three ways that you can get light to start working for you right away. Let’s go. I’m really excited today to finally have somebody that can talk to us about light and its effects on our population.

Today we have our special guest Roudy Nassif, he is the founder of Viva rays which manufactures eco-friendly blue light blocking glasses. For most of his life, Roudy Spent nights staying up late waking up feeling exhausted, unmotivated, and unfocused. And after visiting so many doctors trying different diets, supplements, and herbs, nothing seemed to work. About five years ago, Rudy’s depression and anguish became unbearable. So he decided to embark on a worldwide journey of learning about himself and nature. His experiences transformed his health and life. And his quest to understand this transformation and to help others led him to study light quantum biology and the circadian rhythm. And this is how Viva rays were born.

Roudy has been educating hundreds of functional medicine and naturopathic doctors about the power of light and helping them optimize their personnel as well as patients’ well-being and their sleeping patterns and their energy and focus. Roudy is on a mission to elevate people’s light environment to a whole new level of alignment with nature, in order to live in an optimal rhythm, resulting in better sleep, more energy, focus and higher productivity. And these are all my favorite keywords. Rudy, thank you for coming here to talk about them. Welcome.

Roudy Nassif:

Hi, thanks for having me on. Yeah, million. And Thursday yesterday,

Vaish:

I would love to hear more about your story. But I also want to hear about what are the physiological systems or factors that light can have an effect on? And I know that’s probably everything. And but can you were talking to most parents of children with disabilities were on might also be talking to a few practitioners. So in that context, could you just lead us through the different things that light, bad light, lack of light, too much light, whatever can have an effect on?

Roudy:

Yeah, definitely. When we talk about light, when I introduce the topic to people, most people think of light as simply something superficial, that makes vision possible. However, it’s much more profound and influential than this. Light is the most powerful force that shapes and molds every aspect of our life. And I always try to explain this through a very simple quantum equation by Albert Einstein equal MC squared. And while this is going to be theoretical, I guess it’s going to be a nice way to open up the subject, and trigger people may be to think of light in a new in a completely new way.

Albert Einstein, through his law of relativity, thought equal MC squared is light. And his mass and see is the last thing he taught us that light and matter are exactly the same things. And that model is actually light that is vibrating at a slower speed. And this means that we are light beings and everything around you at this moment is actually light that is vibrating at a slower speed. And this also means that the Earth itself, and matter itself, come from the light and is profoundly influenced by light. So you know, I pondered the beauty of this equation every morning, and we now know the light.

When light hits the cornea and it actually helps us to recreate ourselves every single morning because it’s very well known now that this slide is actually programming, all of the hormones and neurotransmitters that enable us to make a model of ourselves in space and time. And that enabled us to perceive reality, perceive ourselves perceive our environment, and the people around us. And back in the 1970s, I think it was when science first recognized that light entering our eyes was not only for vision, in fact, vision is only a very small aspect of this light that enters our eyes.

That’s interesting. And light. And science started exploring how light actually directly stimulates and regulates our endocrine system and our nervous system. So I could go more into this and explore the relationship of light between our autonomic nervous system and our endocrine system. Does that sound good to you?

Vaish:

That sounds good. And basically, what so you’re saying among the many things that like as it has an effect on our hormones and neurotransmitters also, so? Yeah, so let’s Yeah, let’s talk about that just a little bit more.

Roudy:

Yeah, definitely. I mean, I mean, like, affects our mitochondria it has it affects our circadian rhythms, which run hundreds of 1000s of bodily functions in our body, and also affects our nervous system and our endocrine system and our autonomic nervous system is this subconscious is the system that subconsciously regulates all of our inner workings of the body, like the heart, the muscles, all of our glands, that are actually designed to work for us without our conscious effort. And with that, without needing to put thought into this and this system is always maintaining and restoring balance and homeostasis. And it actually does this through subsistence, known as the sympathetic and the parasympathetic nervous system. And the sympathetic part is the system that supports us while in action while studying while moving and taking action in our life.

Whereas the parasympathetic is responsible for rebuilding and rejuvenating. And basically, we can think of as this autonomic nervous system as this fulcrum point and a seesaw, right, and on one side of the fulcrum, we have the sympathetic system, which acts as an accelerator. And on the other side, we have the parasympathetic system, which acts as a brake. And perfect balance is this equilibrium point, where we have a balance between action and rest between acceleration and brakes. Now, this whole system is actually governed and controlled by the hypothalamus in the brain. And what we now know is that this part of the brain, the hypothalamus, receives light-activated information from the eyes.

Okay, and this light is able to be actually controlling the two different parts of the hypothalamus that control the nervous system. Now, let’s, let’s put this into more practical means when you wake up in the morning, for instance, you go outside, you start witnessing the slowly increasing blue and green light frequencies, okay, which, which awakens you and activate your circadian rhythm. But what this blue light actually does, from morning sunlight, it activates our sympathetic nervous system. And it turns on our pituitary glands. And for example, this leads to the production of pregnenolone in our mitochondria, okay, which the body converts into any steroid that we might need, like cortisol, or progesterone, or testosterone during the day.

Now, here’s the problem, this blue light, and nature is never isolated from the other colors like yellow, green, and orange. It’s all in a calm in symmetrical way, and in a balanced way with all these other colors. And these other colors are actually designed to switch off the production of hormones as needed, right. And it helps us maintain this perfect balance between the sympathetic and the parasympathetic nervous system. And what most of us do, is we wake up in the morning, and we turn on artificial lights, and those lights are very high in the blue. And this blue is very isolated, and it’s not balanced with the other colors. And this eventually leads to over-activation in our sympathetic nervous system and over-activation of the pituitary gland, releasing all these different hormones like cortisol and norepinephrine and adrenaline and there’s nothing on the other side that is switching off the release of these hormones. So we ended up naturally

Vaish:

you would have had a balance where even though you’re turning on your sympathetic nervous system, you would get put automatically in some sort of a balance with the parasympathetic even in the morning. And the release of cortisol and the other invigorating hormones, let me call it that way would be in a certain balance, which is that balance is complete. So you’re on one side of the seesaw, the fulcrum that’s pushed down completely

Roudy:

100% I think, our modern exposures to artificial light are putting us in a state of continuous sympathetic arousal. And that we’re not being exposed to those frequencies of light that nature has designed for us to create the equilibrium, and to actually switch off some of the hormonal production as needed throughout the day.

Vaish:

That is, that’s really scary to listen to, because, on a very subconscious level, everybody’s constantly having this, this switch activated, maybe all the time. Yeah, and I see that you’re sitting in some nice sunlight here as you speak. And I’m guessing that’s intentional, that you said, you’re working outdoors correctly,

Roudy:

it is definitely intentional. And anytime I could set, you know, my office outside, it’s what I’m actually tapping into an enormous body of energy that nature has designed for us. And, and I’m able to harness this power, right, so it has changed my life, like tremendously and the life of probably like 1000s of people that I’ve worked with.

Vaish:

Please tell, please tell us more about your journey. I know that you’ve had a specific tipping point were or maybe not, but where you move to a greater understanding, of how light affects you and tell us your journey.

Roudy:

Yeah, definitely. So as a kid, probably three or four years old, I was suffering from debilitating headaches, extreme agitation, and an inability to focus. And back then I was diagnosed with a very heavy label called ADHD, which I had to carry on my back for so many years. And to me, you know, I was a very intuitive kid, I knew what was going on in my environment. And I had an inner voice within me that was guiding me to not be in that environment. But my teachers and my surroundings didn’t understand that and I couldn’t articulate it. And growing up, I turned into a night owl, and I lived a very destructive lifestyle where I was staying up very late feeling super wild and stimulated to then wake up the following morning, lacking the energy, focus, and determination. So eventually, after they lived in this life, this led me to deep depression, and chronic fatigue, and completed this orientation. And to be honest with you, it was sabotaging every aspect of my life as a civil engineer, I couldn’t work my relationships felt like a roller coaster.

I was desperately trying to look for a solution in order to feel better. And as you mentioned, in the beginning, I kept going from one doctor to another, but to be honest, I felt exhausted with all the different health opinions about what I should be doing. And conventional medicine told me that I should be taking prescription drugs, which I thankfully refused. So I went on this holistic journey of trying so many different diets, supplements and herbal formulas, even meditation, physical exercise techniques. And while all of these built a very great foundation in my life, unfortunately, I was still stuck with the cycle of feeling super wired at night, very depressed and fatigued in the morning. Miraculously, one specific event, change all of this. I spent six weeks on a rural farm in Quebec, okay, I was camping in my tent, and I was exposed only to natural light during the day, and fire and candlelight during the evening. Now, within a matter of three days, something magical happened. I started winding down in the evening feeling super relaxed and mellow. To then wake up before the sunrise for the first time in my life, feeling super rested, energized, and extremely focused.

I was farming all day outdoors, dancing, cooking, hiking, studying, and even deepening my relationship with my loved one and to me, I was in complete awe like that was magic. I didn’t really grasp what was happening. Now, this magic didn’t last very long because after my foreign trip ended, I came back to the city, and at the time, I was still living in Toronto. And within a matter of few weeks, I literally fell back into my depression and inability to focus, and ADHD tendencies, tendencies. So at this point, I was very puzzled, like what happened, you know, I was asking myself deeply and intensely in my heart like, what is that and I remember going to a 10-day vipassana retreat sitting in silence. And during that retreat, the one question that I had wordlessly in my heart is like, what was the and the, like, something was continuously coming back into my consciousness about the light environment. And to me, I was like, what like, right? Like, how could it be? I mean, like, we turn on and off the lights, how could it affect my health. So this led me to a seven-year journey, where I was studying quantum biology, light and circadian rhythms and consulting the world’s leading experts in this field, and I start learning how the quality of the light that we expose ourselves to throughout the day will massively affect the quality of our sleep, focus, moods, and productivity.

Vaish:

When we were when we had met, maybe it was it a couple of months ago, for the first time, I remember having this other conversation with this, you mentioned right now that you were very intuitive as a child and I was struck with this your intuition as we spoke a couple of months ago, I remember sharing with you the stories of some autistic students that I had spoken with and they have continuously mentioned that one of the factors that are dis regulating for them in many environments they go to is that they can hear the lights, firstly, the light is too white, it’s too bright, it’s just the light itself is dis regulating, and then the sound of the lightest is regulating, then you had started talking about that. Now, I’m wondering if you would be willing to share a little bit more about this. And I want to add a little bit more background because a lot of times, of our many of our kids are nonspeaking. They’re, of course very many of them are also very intuitive and fine-tuned to their environment but don’t necessarily have immediate control of telling somebody what is affecting them in their environment. So we’re just taking them from home to school from one light to another light from one sensory stimulus to another sensory stimulus. But I’d love to hear your take on what you’d like to share about this particular experience.

Roudy:

Yeah, definitely. I think people with special needs and especially kids I deeply deeply deeply connected to their inner worlds and how this inner world is continuously in dance with the outer worlds and when those kids are hearing the lights they’re actually hearing the toxic electromagnetic frequencies that are being emitted from nonshielded lights that are flickering also at a higher rate.

Vaish:

So you end up keyword is the keyword here flickering at a higher rate is that’s what stayed in

Roudy:

words, okay. non-native electromagnetic radiation, nonnative Is that what you said? Yes, non-native, because native is like the electromagnetic radiation that we will attune to from the magnetic fields of the Earth and from the sun. And those are the magnetic frequencies, electromagnetic frequencies that have driven our evolution. Throughout the 1.5 billion, it evolved from a single-celled organism called bacteria to a phenomenal human being that is able to think perceive, imagine fields,s, etc. But non-native electromagnetic frequencies are actually new to us.

They’re 150 years old. And they come from artificial light sources. And they can be disruptive in so many different ways. One is the spectrum of light that we are being exposed to. And how this spectrum of light could be extremely unbalanced, compared to the spectrum of light that we get from sunlight. Also, we want to think of the timing of the day, because we all know that as soon as the sun sets and for millions of years, our bodies were exposed to complete darkness. And this signal of darkness that goes through the eyes drives every healing and rejuvenating process that happens in our body was actually designed to heal, and rejuvenate at night in complete darkness when sleeping and this doesn’t get triggered unless our eyes perceive the absence of blue and green lights. Because that’s when melatonin the sleeping hole. moon gets released by it’s not only a sleep hormone, it’s actually the highest antioxidant in nature and it keys cleans off inflammation, it also acts as a support for our immune system.

It enhances our nervous system and our ability to deal with stress. So in our current environment, we are living in perpetual, artificial light, exposure day and night. And this is destroying those rhythms. And as I mentioned, those circadian rhythms, drive 1000s of bodily functions in our body, every cell in our body has a 24-hour rhythm that is actually entrained by the rising and falling sun. So we need these light and dark cycles in order to be able to function at our optimal during the day, in order to sleep, repair and rejuvenate at night. And I think a lot of those kids are actually hearing that flicker because that flicker is subconsciously communicating to our nervous system, even though we’re not consciously aware of it.

In the quantum world, which is the world that is beyond our five senses, a very small stimulus can create amplification, cascading effects in our cells, and even one photon marriage. So when we are dealing with the quantum world, that’s when we want to start dealing with the unseen and unheard beyond what we’re used to perceiving through our five senses. And these things happen at a subconscious level. In fact, the circadian system and how light stimulates the circadian system are completely subconscious. Even though it drives every biological function in our body, we don’t have a conscious awareness of it, so to speak. And I do believe that those kids are intuitive to the point that they cannot, they can connect to the unseen and unheard, which is affecting all of us.

Yet, we are literally blind to it. And science is showing us that mitochondria disruption and circadian disruption that is caused by a junk light in a junk artificial environment is actually the cause of 90% of all modern chronic diseases, including anxiety, depression, Alzheimer’s, cancer, and so on. And there are very interesting studies by Dr. Wallace from the University of Washington, showing how these things are actually being generated in the mitochondrial genome and not in the nucleus genome. I don’t want to go too deep into this, but, but what I’d like to say is that we can learn so much from these kids with special needs. Because I know I know in my heart that these kids are more attuned to the environment, we are all being affected, yet, they are more sensitive to it. And on a cellular level, we are all being affected. And we and one day we run into a chronic disease, and we start thinking like, Oh, why, you know,

Vaish:

thank you for sharing that I have many, many, almost 1000s of questions coming in my head. So I’m just kind of sorting through them to, to find. So as you said that we’re all exposed to junk light all the time. And I’m sure many parents, are you panicking right now? What can you do? Because first, we’re living in artificial environments, we’re sending children to school, there are so many things, right. So there are some environments outside our control some environments within our control, even in the environment in which we live within our control. We have to live with other people who are outside our control who will make like a certain kind of light. And so basically, it’s a complicated matrix of things. But if we could talk about maybe three things, or any number of things, actually, I just like to use the number three that that parents can do right away to, to support this, or maybe not solve but support this issue. Where would they be?

Roudy:

Yes, definitely. That’s a great question. And there are a lot of things and it’s very simple things that we can do. Also, I want to take the opportunity to share that I’m not going to be able to go over all the solutions, obviously, because we won’t have enough time. So we also have a free guide on our website www.vivarays.com. It’s called the key to mastering your sleep and energy. And it’s designed to distill down all the science of quantum biology and circadian rhythm into very practical means giving actionable steps of what can someone do today in order to start elevating the light environment to a whole new level. So I want to

Vaish:

link to that. I linked to that the show notes

Roudy:

definitely. Now from a circadian perspective, there are very simple things that we can start doing today, in order to retrain our circadian clock to the solar timing, and start completely elevating our sleep, energy, and productivity. Now, number one, and one of the most important things is waking up in the morning, going outside right away facing east, and witnessing the sunrise. And even if it’s cloudy, even if it’s cloudy, and if it’s cloudy, that’s when it’s even more important to go outside and witness the sunrise because that’s when we actually need more time to collect those photons into our circadian system and activate that system, which will signal to our body that’s daytime. And this signal is extremely important because it’s going to increase cortisol in a healthy way and adrenaline. And this is what is gonna inform our body. That’s actually the time and it’s time to stop moving and get going. It’s time to stop focusing, it will increase our sharpness, our alertness, and our ability to feel happy and motivated about the day. So okay, I’m

Vaish:

going to put all my objections first, even if it is cloudy, you said yes. So obviously, I’m going to say even if it’s winter and icy cold, just go and see it doesn’t matter. Right. So that is clear. What about if you have if, if, if you’re bad sleep, or if you have not slept enough? Now, let’s say we’re talking about kids, this is one issue that keeps coming up because my son was having a lot of trouble sleeping, finally, it’s working out, but I’m never sure should I wake him up? Or should I not let him sleep? Which is more important sleep or circadian rhythm?

Roudy:

That’s a tricky question. And it’s not sleep or circadian rhythm, I hear this as is it more important to sleep and extend the sleep or to see the sunrise. Because yes, eventually, when your circadian rhythm is in harmony with the solar time, you’re going to start waking up, you have this inner alarm clock that is going to nudge you to wake up. And it’s going to take probably two to three days to readjust the circadian rhythm so that it’s in complete harmony with the environment. But where do we start from morning sunlight, actually, it will provide energy for the natural conversion of the amino acids in our eyes to convert into serotonin and melatonin? And this melatonin gets activated at night. And in one hour, I start perceiving the absence of blue and green lights.

So here’s where we need to find balance for this equation. Because first of all, if we don’t get enough morning sunlight, we’re not going to build up melatonin in our system. And second of all, what most people do maybe is the sunsets, they come back home and they are exposed to the second sun from artificial lighting. And what this does, even though we have built enough melatonin during the day, melatonin will not be released, because our brain and our bodies are being tricked that still daytime, it’s increasing our cortisol at the wrong time of the day and destroying melatonin production. And this will start shifting our sleep in the wrong direction. And this may be why your son has been struggling with sleep. So he feeds wire and then stimulated that night when he’s actually supposed to be winding down and going into deep states of repair and rejuvenation. And so you got to start from somewhere. And one side and then the other side will automatically adjust so to speak.

Vaish:

Right. Right, that makes sense. So so so tell me a little bit more about your tip number two, you said once one sunset happens, did you say that already? Did I miss it?

Roudy:

So we talked about sunrise and we like if it says super like blue sky day, a minimum of 15 minutes is great and will be enough to activate the circadian system. Now, the more the better, obviously because it’s not only about the circadian system, there are 1000s of different things that light could affect Okay, yes. Now, if it’s a cloudy day, a minimum of 30 minutes and if it’s an overcast day, a minimum of 45 minutes. Okay. Okay,

Vaish:

what is the difference between cloudy and overcast?

Roudy:

While cloudy is like a regular cloudy day like white clouds like

Vaish:

cloudy is white clouds and,

Roudy:

and overcast is like you know when brightness is extremely low outside. But it’s great to mention the even on an overcast day. It’s we’ve done the measurements and it’s at least 10 times brighter than it is in an indoor lit environment. And we need that brightness to stimulate our circadian system. So that’s why number two is throughout the day, taking sun breaks Okay, and going outside for five minutes and exposing our skin and our eyes to natural sunlight, no sunscreen, and no sunglasses. Number three is

Vaish:

Oh, no sunglasses either. Okay, that makes sense. Yeah, yeah. Yeah.

Roudy:

There’s a lot to say about this, obviously. But maybe we can explore this in a different episode. Yes. Number three is as soon as the sun is setting around that time, also going outside and witnessing the slowly fading light, because this is, we got to start thinking that light is information. And arguably one of the most important information in our environment.

Vaish:

That can be the title of this podcast light is information I like

Roudy:

100%. So witnessing that is very important, because it’s going to signal to our nervous system, our hypothalamus in the brain, which will send hormonal messages to the millions of cellular clocks in our body, that it’s time to wind down and to start preparing for rejuvenating night’s sleep. Okay, and as soon as we come back home, that’s when it’s extremely important to have a high-quality lens technology system like the reverse glasses, which we could talk a little more about. But those glasses, long story short, are designed to filter out those frequencies of light from artificial light that will confuse our brain and our bodies into thinking that it’s daytime again and start disrupting our circadian rhythm.

Vaish:

I love those three tips. Is there. My one question about Tip two, and then I would love to ask you about her glasses as well, is that a frequency for the sun breaks you mentioned or just whenever you can go out like taking, do some work go out to some work quite like that.

Roudy:

So important times, I’m gonna highlight some important times. And anytime we’re talking about sunlight, we got to remember that we have also a shirt annual living, which is connected to the seasons and our geographical location. Because if you’re living up north, for instance, UVA and UVB from sunlight are not present all year long. And those will act as important information to signal to our system about the time of the season. So our body also makes the necessary physiological adaptation to actually adapt to the season. Okay, but important times are around 9 am. And that will also depend on where you are. And on the time of the season, I recommend using an app called I think it’s called D minor. And there’s another one called the circadian, the circadian app, I’ll leave links for those too. But what this app does, it takes your geographical location and starts telling you about when UVA rises when UVB rises, and the time of the sunrise, the times of the sunset. And UVA is a very important signal to our body because around 9 am as UVA rises, this actually starts shutting down the hormone the production of cortisol and progesterone from the pituitary gland. So it acts as a balancing signal to that blue light that activated the pituitary gland in the morning.

Okay, now, UVB is the frequency of light that enables us to make vitamin D when it strikes the skin. So when can we make vitamin D will depend on your geographical location? This is why I recommend this app. But generally speaking, when the sun is hot at its highest position in the sky, so that would be around 1112. And depending on your skin type, and depending on how much you’ve built your solar colors, you know, I could spend all day long in the sun and I’m okay because I usually build my solar colors in the spring so that I can absorb more light and summer without burning.

Vaish:

And what is that? What did you say about solar why is solar color

Roudy:

so the solar callus is. So you build your solar callus in the spring by gradually exposing yourself to light so that you become more resilient to the frequencies of light in summer, and your body becomes more able to absorb that light without burning. And one way we are built to enhance our solar callus is by actually exposing our skin to early morning sunlight when the sun is rising because that’s when the sun is actually high in infrared light and has no UV whatsoever. And this light actually prepares our cells and our skin to be able to absorb UV which is the opposite spectrum from infrared and To be able to absorb the frequency of light without burning and enhance our ability in absorbing that light.

Vaish:

Thank you, thank you for explaining that. And

Roudy:

UVA, around 11 or 12, UVB for making vitamin D. And again, when the sun is setting, okay.

Vaish:

Got it? So you mentioned that after, after sunset, the, I don’t know, did you mention it, it might have been from a previous conversation, but the importance of also minimizing external light, artificial light after sunset. And I think this was from a previous conversation, but you’ve mentioned it today as well. And one of the ways is to use it because of all that it’s not possible all the time to turn off the light in your home. So it’s to use blue light blockers, is that correct?

Roudy:

Yes, I usually don’t like to associate much with the term blue light blocking glasses, because there’s a lot of marketing gimmick around it. And a lot of products that we’ve tested are actually filtering random frequencies of light. I see. And this is why like in vivo rays, we use the circadian lens technology system, which is actually composed of three lenses, one for the daytime, when we are actually indoors in front of digital devices and artificial lights. And this lens is actually designed to address the specific frequency of light, distorted, unbalanced frequency of light that we expose ourselves to from artificial lights. And it’s designed to reduce it, and balance that blue with the green and yellow so that we’re getting more proportionate and balanced light into our eyes. And that’s only to be worn indoors in front of artificial devices or under artificial lights.

Okay. And the other two technologies, one is called the evening. And this one is designed to be worn after the sunset right away, and it blocks all of the blue and only the highest frequency of green. So that you could start winding down and relaxing. Yet, you’ll still have the energy and vigor to run your evening tasks without feeling very sleepy. And the nighttime glasses are actually put on one hour before bedtime because those are designed to block all blue, all green and decrease the brightness by 15 times, which literally signals to your system that it’s completely dark outside and starts increasing melatonin production and growth hormone in the body. And that’s another very important aspect for children because many children nowadays are being challenged by the shutdown of growth hormones, by artificial light exposure.

Vaish:

I see. Yeah, that is definitely I can see how every one of the topics that you have addressed could potentially lead to a completely different podcast episode for each of them. So yeah, and as growth. Growth hormone is so big in so many aspects. And just making a quick note of that to discuss later. And for me to think about it a little bit. But thank you so much for sharing these tips. And, and your website is Viva res.com, the IVARAY s.com. This is where people can find it, I will put a link to I’ll go ahead and find the exact link to the free ebook or guide that you mentioned. But this is also where people can find the three lens technology, the different lenses for the three different situations or times that you talked about.

Roudy:

Yeah, I want to add one more thing, because you just came through. And I think it’s very important. One thing that parents could do to really help their kids is to unplug wi Fi’s, and turn off phones while sleeping. Because all of this electromagnetic radiation is actually picked up by the pineal gland that produces melatonin. And it completely disrupts melatonin production and growth hormone for kids. As well as for adults, by guests. Kids are much more vulnerable because they’re at this stage where they are growing. And this is a very important thing for parents to do.

Vaish:

Okay. This continues to be and I’m sure many parents can relate to, this. This continues to be an argument between me and my husband who works till 2 am at night with Wi-Fi. So this is ongoing. Maybe I’ll play this podcast for him and see if something changes. Yeah. Thank you so much for your time. We really I really, really love this conversation. You touched on so many aspects. And it’s like I said, it’s got my brain running in many, many directions but I  can so many of these things that I need to do right away. After I spoke to you last time, I did start getting up and doing the tip number one getting out for sunrise. So I’m going to see if I can implement that with it as well. Beautiful. Yeah.

Roudy:

Awesome. Very nice. Thanks. Thanks so much for having me on. And it’s a pleasure. And I’d be glad to have an explore other topics as well because as you mentioned, the topic of light is extremely big and influences us in so many different aspects. So there’s a lot to explore.

Vaish:

Yes. Thank you. Did you love the tips that Rudy gave about light? Now like I said, I’ve actually started tips one and two for myself, and my son also just started this week. It’s rather fun to just get up and see go see the sun be in the sunlight for 15 minutes right away after waking and it also helps me get my morning walk right after I get up. So it actually feels really nice. That is it from us for this week. I really look forward to seeing you again next week. But wait, if you love this podcast with Rudy as I did, please take a minute to drop a review and a rating it really helps us reach more people.

Roudy:

Bye

89 Is School going to educate your child?

89 Is School going to educate your child?

Is school the right place for Education? Today we discuss this age-old question with some interesting twists.

If you are the parent of a child with Autism / Down Syndrome / Cerebral Palsy / Other hidden disabilities, you might find that the questions about school are very different for you.

I provide an decision/question framework to help you decide for yourself.

 

Audio Transcript

Vaish:

Is school the right place for education? Today we discuss this age-old question with some interesting twists.

Now, the discussion about whether education happens in school is an old one. Perhaps over hundreds of years, but especially over the last 50 years people have discussed whether children should be schooled, homeschooled, unschooled, or schooled in small groups schooled in different settings. schooled perhaps open to the elements outside or maybe in a building seated on the floor seated around the teacher, or seated on a table and chair. People have discussed educational philosophies and you know of many of these, these could be Montessori Waldorf. Or if you would look at a more fundamental level. There are philosophies like essentialism, romanticism, and so on.

People have talked about and continue to talk about whether the teaching should be subject-centered, matter science-centered, or teacher-centered, or student-centered. I have been part of these discussions where parents have seated themselves around fireplaces in the United States, cups of steaming chai in India, and discussed the validity of these approaches. Of course, all the while very firmly sure that they of course, had chosen just the best for their child. Still, it made for dinner conversations it made for gentle ribbing laughter and stirred the government and state society, and answered how the world isn’t moving fast enough for our kids who are just plagued by the system. And that’s capital S, Ys, t e n. All in fun. Except now I’m the mother of a child with not one but at least two disabilities. And these discussions are a luxury, private school or public school. Whichever school will take him in Montessori Waldorf.

Oh, here’s what happened. They were actually designed for children that learn differently, but now they don’t really take in children with disabilities. How about unschooling? You know, well, that’s my son’s default anyway. And that’s generally what the education systems hopes I will do is unschool my child or at least pull him out of their school system, right? And anyway, I’m not really sure how that works out unschooling works with kids with disabilities, I’m pretty sure it’s a privilege of the NTS. neurotypicals are those that have generalized communication skills at least. But you have schools that will take your son in? That’s what people say to me, the neurotypicals tell me you have schools that will take your son, and don’t public schools have special ed classrooms for kids like that. This is their educational privilege that firmly sets its foot on kids like that.

Right? You’ve heard that you’ve heard people say that to you without even getting into the whole story of segregated classrooms. And without even talking about this, and yes, that’s what we call it when kids with nothing in common except that they communicate in a certain way, or share a certain combination of diagnosis, when kids are put in one classroom, and it’s not based on skills, but based on perceived deficits. This is segregation in a classroom setting. Without even talking about that. We don’t even have to get into such nuance of discussions, a fundamental question often pops up for a mom or a dad of a child with autism, Down syndrome, cerebral palsy, and so on.

When people ask you what schooling system you would prefer, you know, the only answer we often have is maybe one that allows my child to sit in the regular class, right? And did I say Allow? Oops, I’m sorry. Okay, but that’s how I’ve often thought about it. So the answer is that neither I nor any of the other parents, with kids with autism, Down syndrome with cerebral palsy, or other hidden disabilities, really know what schooling we would prefer for our children because we’ve not been given the choice of school. Most schools, in fact, behave as though enormous favors have been made, just because of the privilege of having our you know, they’ve given us or our children to be able to stay in that system.

So the question of whether schools can provide education is actually a very simple one. It no longer depends on educational philosophy, teacher-centered subjects centered students centered Montessori Waldorf environment tradition, conservative-liberal outlooks, none of these matter the question is just one. Does the school believe my child is capable of learning? Or is the school providing glorified daycare? If this sounds harsh, just stay with me for a bit. Let’s deal with this like in an algorithm or a payoff charter game theory set up whatever you want to think about it, as that’s the school believes my child is capable of learning. If the answer is no, well, school is not going to be able to give my child an education we’re done here. If the answer is yes, if the school believes my child is capable of learning, let’s go to the next question.

Does the school believe my child is capable of learning anything but the alphabet and numbers are primary poetry? In addition? Forget about poetry primary, what did they call it? Jack and Jane books or something like that is just basically big font baby books and addition? Does the school believe my child is capable of complex learning? If no, the school will not educate my child? If yes, if the school believes my child is capable of learning complex material. Let’s go on to the next question. Now, does the school believe that my child’s current communication skills represent their cognition? In other words, do they think that if my child cannot speak he cannot think? Do they think if my child struggles with alternate communication, he also struggles with thought?

Unfortunately, universally the question at this point becomes moot? The answer is always yes. And therefore the school cannot educate my child. presuming competence is a loaded word, it is impossible to presume competence without understanding the brain-body disconnect. In many children with disabilities. It’s impossible without understanding apraxia without understanding that communication is essentially at the end of the day.

A fine motor skill in many ways, and is no more representative of my child’s cognitive abilities than my ability to Tango is a representation of my cognition. In the absence of this understanding, special education classrooms are currently structured for teacher comfort teacher control, and for teacher stability, which makes it very hard for children to actively learn. This is a complex scenario, which is very individualized and sits in I have navigated much of this from outside the school system. The few years that said was in school were enough to teach us at the time that the weight of perceived notions about Down syndrome and autism is huge. And that actual academic education happened outside school more often, actually, always. So let’s come back to some very practical basics.

What can you expect from school, I think everyone can expect a change from home a relief for both the child and the parent. Many people hope to expect peer interactions and respectful adult interactions. We also hope to get exposure to different subjects and clubs and interests, just a wide area of discussion topics. However, the latter two peer interactions and exposure to different topics are quite dependent on the special education culture in your school. Okay, but let’s hope for the best. Coming back to the basics. What you can not expect from school is often in fact, unfortunately, an actual progressive academic education.

The one non-negotiable in my mind has always been that as parents, we need to be able to figure out the learning and communication strengths of our children. This isn’t always easy or accessible, we might need to talk to experts follow other parents whose kids seem similarly skilled scour the web, pay attention to small details, there’s a lot of research and study that goes into it. And unfortunately, a lot of privilege ties into it as well. But once we know how our children communicate, when we know how they learn when we can choose then we can choose whether the school will work from a position of our position of strength and authority. When I say I’m including our children and us as parents, we can advocate for our children’s learning. And if that wasn’t clear, what I’m trying to say is that step one is that really understand our children’s communication and how they learn because this is so individual, okay, and school isn’t really working.

It’s a system with a huge amount of bias. And b It’s a system with a huge number of people, right? So once we know how our children communicate, when we know how they learn, then we are children and we can stand in this position of authority of strength. And then we can advocate on an ongoing basis for our children’s learning and access to communication and more. So remember that flowchart we cascaded through a few minutes ago with questions. We’re going to do that again. But now these questions are for you. Do you, mom, dad I truly believe that your child is capable of learning. If not, why not? Do you believe your child is capable of learning complex math and complex language? If not, why not? And if yes, do you believe that your child’s current communication skills represent their cognition?

If this sentence is not clear, what I mean is that if your child is speaking, do you believe that how much they’re speaking is representative data of how much they understand, okay? Because I really want you to understand that speech and understanding gestures and understanding eye contact an understanding of very different things. If you do believe that your child’s communication represents how much they understand, please go and listen to my TEDx talk, you just need to go to YouTube and type in this phrase, who decides how smart you are? Do this right now pause this, go to YouTube turn on who decides how smart you are, and then come back to this talk. If you don’t believe that your child’s speech and gestures are a reflection of their intelligence, congratulations, this is step one of presuming competence, you will be fine and your child is already fine.

You may know that my course roadmap to attention and regulation, we call it roll or Oh AR launches on April 14. And here’s the thing without educational strategies, a nutritional intervention that I’m teaching in the role is like having one foot on a speeding train, and the other foot on the ground, you know what’s going to happen. And this is why I’ve been so particular about giving my other course nonlinear education for free withdrawals. So it is a free bonus. It’s an equally big and when I say big, heavy, and content course, okay. This course includes for coaching calls also for free. Nonlinear education is my favorite thing to teach. And it’s my learning over so many years, and I continue to learn as I teach more neurodiverse students because I also teach them chemistry, I continue to learn more about how and when nonlinear education works.

This teaches you how to start teaching science and math and also language to your child with disabilities, how to presume competence how to understand their learning strengths, and how to move on with their education, to an age-appropriate place. This is the most important information that I could share with anyone and it has transformed my life and I know it will transform your life too. You can sign up at functional nutrition for kids.com/roll. I know today’s podcast was a change a shift from the discussion that we normally have. I hope it has opened some doors in your mind. Maybe close some doors to and I hope it’s I hope a different thinking process has set in I would love to hear from you. You can email me advice at functional nutrition for kids.com. Or hopping to my Instagram where I am known as Dr. Vaish Sarathy. That’s Dr. Vaish Sarathy. See you next week. Bye.

88 Herbal Medicine for Chronic Health Issues in Kids with Dr Mary Bove

88 Herbal Medicine for Chronic Health Issues in Kids with Dr Mary Bove

Wouldn’t you love it if there were natural, plant-sourced, HERBAL alternatives to everything chronic you have been struggling with for your or your child, whether that be attention or digestive issues or immune support?

Today’s guest Dr. Mary Bove is a herbal medicine expert and takes us through the ins and outs of herbal medicine, when it works and what is often missed in application for kids.

Here’s a spoiler: Dr. Bove’s favorite herbs for kids under 5 are:

  1. Fennel Seed
  2. Chamomile Flowers
  3. Lemon Balm

You can use these in teas/extracts/baths/glycerin extracts and add them to water or juices, and so on….
You can read Dr. Mary Bove at herbaldocmb@gmail.com

And make sure to get your free Gut Health Kit at www.functionalnutritionforkids.com/guthealth

Audio Transcription:

Vaish:

Wouldn’t you absolutely love it if there were natural plansource Herbal alternatives to everything chronic you’ve been struggling with? Whether that’s for you or your child, whether that be attention issues or digestive issues or immune support? I know I would. Today’s guest is Dr. Mary bourbon. She’s an herbal medicine expert and she takes us through the ins and outs of herbal medicine in this episode. When does it work? What does it do what is often missed in application for kids? Welcome to function in nutrition and learning for kids. I’m your host Vaish. I’m mom to an autistic nonspeaking teen with Down syndrome. I am a math and science teacher to neurodiverse kids, and a functional nutrition consultant to families of kids with disability. I’m a chemist by training and a TEDx speaker.

Now I know you wear many hats too. So I want to thank you for taking the time to listen to this podcast. I know you will take a lot from this particular episode because Dr. Bove talks about three favorite herbs, both for kids under the age of five and over and not not giving any spoilers yet though, if you’ve seen the show notes, you’ve seen it. One of the things she emphasizes is how diet and nutrition and gut health can be critical in treating long term symptoms, even when used in conjunction with herbal medicine. In this context, you can get access to a freebie and some very key tips to gut health at this link, www.functionalnutritionforkids.com/guthealth. And once you have that ebook with you let’s take a deep dive into herbal medicine. I’m really, really happy to introduce Dr. Mary Bove today. Dr. Mary brings more than 40 years of herbalism experience and 25 years of work as a naturopathic physician.

Dr. Bove was previously the Director of Medical Education at Gaia herbs before transitioning to a current role on the Scientific Advisory Board in 2019. Since starting a herbal journey at age 18, Dr. Mary has helped him to three tenets, walk your talk, believe in the plants and practice herbalism everyday in your life. She says plants have a way of drawing you in. And her expertise runs really deep and she shares it permanently and patiently.

She’s also the author of an encyclopedia of natural healing for children and infants and his co author of herbs for women’s health. As a made by Dr. Bove has been present in hundreds of home births and a practice specializes in fertility and pediatric health are trailblazing work with herbal formulas for children led to a partnership with Gaia. Welcome Dr. Bove, thank you so much for joining us here.

Dr. Mary Bove:

Thank you. Thank you for inviting me.

Vaish:

I have a question right away. You’re one of the rare physicians and herbal experts that I’ve met that work with kids. And I want to ask you how different is using herbs for kids, as opposed to using them for adults? And then I mean, maybe we could stretch the same question to babies as well.

Dr. Mary Bove:

Oh, yes, it’s a wonderful question. And I think what for me, as a young mom, back in the 1980s, I really kind of found that there wasn’t much information on using herbs with with kids. And I struggled to like find that information. And then I recognize that some of it was going to come from just kind of teasing out what you might know from the traditional piece on herbal medicine. And so one of the things that I think was very helpful to me is, as I trained as a physician, I began to understand how diverse children are.

So how you might treat a baby under the age of six months versus a toddler, you know, 18 months versus, you know, a child who’s more at five or 10 is going to vary partly on what kinds of development where they are in their human development, what kinds of illnesses might occur, and also their ability to comply with different herbal preparations. So what I recognize right away was was that oh, there’s a lot of information in order to understand that we should be using herbs that are safe for kids. So I call that the that herbal kid Materia Medical.

We should be considering how big are those children because most information out there is about adult dose and so a practitioner or mom or herbalist might have to figure out what’s a dose for five year old you know, based on the fact that I have the information of an adult dose. And current information and research and science I think also has helped us to understand safety. So being able to look at some of the traditional plants used with children like spearmint or lemon balm or chamomile and and see now there have been safety studies and effective dose studies to help lead us there. But back when I started, there really wasn’t and I have to thank my two adult children for being such little kind of experiments for me often with using plants or herbal medicine.

Vaish:

So I bet did you have to rely a lot on your intuition as well as to you know, you know how this works. So is it going to work for kids or not?

Dr. Mary Bove:

Yes, I definitely relied on my intuition on bits and pieces I would get from other herbalist. So I was fortunate enough to have my training in the in the UK. And the traditional view of using plants stems from a long history of the Medical Institute of medicinal herbalist there. And in some ways, it really is strongly steeped in the view of herbal medicine. herbs in the United States often tend to get integrated into naturopathic medicine and functional medicine. And so the views are, are different. And we have more what we would say, standardize herbal medicine or more, I’m kind of leaning towards capsules and tinctures versus extracts and teas that you might see in the UK.

so I found that I had to, like ask lots of questions, put a lot of kind of pieces of information together to draw some, some conclusions. And then, you know, also to really just kind of watch watch what, what kinds of herbs really made it through as far as like, being useful for kids like what were the the ones that for 50 or 60 years, the herbalists have used those, but they’re not going to use them if they’re not effective. Right.

Vaish:

And you brought in a really important, interesting point about capsules, and versus you know, versus think, versus tinctures are, these are the different ways that herbs are used. I, I want to wait until I asked this question, because I think of capsules as a very, I may be wrong, but as a very allopathic way of having. And it’s it’s like just like, you know, a pill for an ale but except now you have an herb right. So yes, I’m wondering what actually, maybe I should just ask it now, what do you what do you think about that? Is that are there some preparations that are more effective than others? Do you have an opinion about, about dosing herbs, the way people those supplements or even drugs?

Dr. Mary Bove:

I think those are excellent questions. And they’re definitely questions that I think of as growing pains in the kind of the herbal world. First of all, I think that many people just think herbs and they think either, you know, culinary Herbs, or a nice tea or capsule. And there are hundreds of different herbal preparations out there that a good herbalist could use. And what I found was that, going back to herbal preparations, and the different variety, made all the sense in the world to working with kids, whether that be a foot bath, or glycerin, or made into a popsicle, or a honey bun. And I find that when we’re just having a capsules, like you say, it’s like we take a capsule, it’s a medicine, oh, I’m sick.

Well, herbs aren’t necessarily about being sick. It’s about keeping you healthy, and keeping the tissue and the body running smoothly. So you go drive your car 3000 miles, and you want to change the oil, so drive smoothly for the next few 1000 miles. Well, if we, if we utilize our physiology and our day to day life, we should do things to tone it up and, and support it during the seasons or during challenges. And I think that herbs offer that, that piece, and they also offer a piece of empowerment, and the ability to do self nurturing. So when you take the time to mix some herbs and infuse it into tea, you smell it, you’ve taken self care time or care for your child. And that’s different than just popping a pill. And I remember once a 10 year old coming to see me who had a serious condition. And she looked at her mom and she said,

Well, why am I taking all these pills? If you told me I’m not sick? And what question and it just like the light bulb went on, and I thought she’s right, you know, but there are times with serious conditions and illnesses where I think a concentrated form of a nutrient or Phyto compound in a plant would be useful. So There are times where I think it is applicable, but 100% of the time as a supplement or herbal supplement, I think those people miss some of the healing power that comes through the other ways of eating or tasting or smelling or applying herbs to the skin in that sense, sense.

Vaish:

That’s a wonderful answer. Thank you. And taking from that question, have kids have kids help? Are there any common conditions, whether they’re acute or chronic, that you see in kids that makes you wonder, if only I could tell this? I mean, so and so apparently use herbal medicine, like you feel that herbal medicine is neglected for, for a few conditions that it could work amazingly for? Are there some conditions like that?

Dr. Mary Bove:

I do. I think that what’s what comes to mind or like more of the types of things like repetitive otitis media or chronic rhinitis and a topic issue, maybe with an eczema or, you know, a piece like that, and or stomach issues where there may be stool issues or stomach aches. And I think, there a lot of times, what happens for those children is a lot of times they kind of just don’t have enough of the kind of support or foundation in their immune function to to deal with what’s going on. And I think that that the microbiome contributes to that the prenatal environment contributes to that the diet that they’re keeping food, introduction, breastfeeding, all those things contribute to it. But when you see the child who’s got that kind of symptoms going on many times, in my practice, I would say,

Okay, let’s get them on good essential fatty acids, make sure that they have bioflavonoids. And let’s get some of the tonifying herbs and build them up with with things like stragglers and elder flowers and elderberry and chamomile for their gut. It’s just and we don’t think of those as like strong plants or you know, really like medicine or drug like plants, but they make huge difference in the quality of the innate immune system in the mucous membranes and helping with colonization and helping to manage normal day to day inflammation, so it doesn’t get out of hand.

And many times I think the plants work very well when there’s a good nutritional foundation. So I do think things like essential fatty acids, and bioflavonoids, and zinc are are important for young, developing immune systems, and often those types of things are compromised in the prenatal environment. And so hence, the child may not have the most optimal levels of those nutrients. And I think if they’re there, it helps the herbs work better.

Vaish:

That makes sense. And that actually answers another question that I was going to ask you about, if you thought that, you know, or what are some complementary approaches that you might see that magnify the effects of herbal medicine? So you you spoke about, you spoke about diet? Right. So are there any other things that you find that that are complementary synergistic?

Dr. Mary Bove:

Yes, I, you know, as I mentioned, those three particular supplements really stand out to me, I like, you know, to see high poly phenols. So, you know, the more colored fruits and vegetables or plant based kind of sources for the child, sometimes, you know, the mom will come or the dad will parent will come and say, Oh, they don’t eat any vegetables. And my next question to them is, well, are they eating fruits? You know, if they’re eating a variety of fruits, I’m quite happy, you know, oh, they’re like, oh, no, there’s all that fruit sugar.

It’s like, that’s not a problem. It’s the variety of plant based, you know, exposure we can give them and if that comes from blueberries, and blackberries and pears, and then all the better. They also think that getting them out outdoors being out in the outdoors, as long as there’s not like, you know, wildfires or say, but I do think that also is used is a useful dynamic for building health, as well as having, you know, good, loving time and that that time where they get nurturing whether that’s massaging or laughing or cuddling when they read a book. I think that’s important, too.

Vaish:

Nice. Yeah, I agree with you. I I have a couple of questions regarding what you said. And I’m just going to pick them one at a time. You mentioned tonifying herbs previously? And can you explain what that means what a tonifying herb is?

Dr. Mary Bove:

Yes, it’s a, it’s a term used in herbal medicine kind of to describe plants that are revitalizing that are supportive to the tissue. So a tonifying, her might actually help to keep the integrity of the will say, the gums and the membranes lining the mouth will say, and so if those tissues are compromised one, maybe through inflammation, you could use something to tonify that and get it back to what we would say it’s its most optimal function. So we think of tonics, things that nurture the tissue or are nutritive. So a plant, like will say, for instance, nettles, nettles is a nutritive plant that has anti inflammatory qualities, but it’s very high in many of the nutrients that we might use in our health picture.

So that would be a tone of fine plant, use to build someone’s health, often it’s, they’re used post a, an issue. So like, with a child who always has will say, a runny nose, we know that there’s a lot of mucus kind of some inflammation, some irritation going on, after a while, that’s going to create a strain on the the cells of the tissues, and it may be create some more chronic inflammation.

By working with plants that tonify the mucous membranes, you can kind of mediate that. So it’s kind of at the end of the day going in and soothing, you know, tightening, tucking it in and, and getting it ready and letting it revitalize itself for the next day. So in the current world, we think of plants called adaptogens, that help us adapt to stress. And in the old time world, we might have called those plants, you know, nerve tonics tonifying to the nervous system. Now, we have more, more language that to depict things.

Vaish:

Yes. I’m, there’s two questions that come off from this, there’s so much and thank you for all the detail that you’re giving in, because I’m just developing more and more clarity, I think even my mental language is increasing as I listen to you. And as you talk about, you know, trying to find the nervous system or, you know, just helping the body adapt to stress, I’m assuming that you, like you said earlier, this isn’t just like popping a pill every now and then. But it’s it’s a more consistent routine. And, and perhaps that it takes time, because I think a lot of times, there is this expectation that everything should work the very next day, is how does this work in herbal medicine.

Dr. Mary Bove:

You’re so right on there. And it is it’s, it’s a hard mindset to kind of grasp, and you have to keep it in mind day to day. And I think there’s that there’s two keys to that. One is the that, as a practitioner, you have to remember that and not be impatient and give it the time. But you also have to get your patient to also recognize that. And so I often will say, Well, if it took three months to break down, or you’ve had this call this issue for three months, it’s gonna take 10 times as long to refax or, and that’s what I tell myself is like, give it that time. And then I also think that one of the things we’re trying to do is not just get rid of the symptoms, because sometimes the symptoms are like the voice of the body screaming out, it needs attention. And so it’s saying, you know, I need attention.

So when you get rid of the symptoms, the body starts screaming, stop screaming out, but that doesn’t necessarily mean that it’s at its optimal functioning health, right? So that’s where the herbs kind of continue to share up that foundation. And so you’re looking for deeper kinds of signs that the wellness is back, whether that’s with energy or skin quality, sleep quality, and those take longer, you know, sometimes I would use a questionnaire that would just have some simple questions like that on it and then re give it to the mom or dad, three or four months later.

And just in that perspective, be able to see, hey, we have had this transition, even though we still have still have some of these issues. And I, again, I think going back to that pill popping thing is we’re expecting everything fast. Well, you know, Mother Nature doesn’t work fast, the body doesn’t really, you know, work fast in that sense. And so I think it helps us to slow down our mental piece and cultivate a little patience with ourselves.

Vaish:

I think that makes sense. Because what I’m getting from what you’re saying is, if something works fast, what you’re probably doing is you’re just addressing the symptom because you can suppress the symptom really fast that you can do, but you can’t really heal fast. Is that correct? Yeah.

Dr. Mary Bove:

Yeah, exactly. And not that we don’t want to turn down the symptom. So I do think curbs, you know, many herbs can offer some symptomatic treatments and relief, which is good. And but recognizing that there’s more, there’s another layer behind that.

Vaish:

Right? Absolutely. We’re, we’re in this, in this age, perhaps an unprecedented age, we’re not only adults, but so many kids have chronic chronic chronic health conditions. And I know that estimates vary, but I’ve been, I’ve been seeing about 80% of autistic kids experience chronic digestive issues, specifically, and whatever those may be, but some sort of digestive issues, and definitely neurological issues. I was going to ask you, what is the role of herbal medicine when you’re working with kids that are experiencing chronic conditions? But we’re going to change that question. How do you use herbal medicine? Do you have like a favorite class of herbs? Whether that’s I know, you mentioned tonifying or adaptogens? And that’s the only class I know so far. But do you have do? How do you use herbal medicine when you’re working with kids that have chronic conditions digestive, usually or otherwise?

Dr. Mary Bove:

Well, it’s a big question. Yes, and, and I do often think that the digestion and digestive health and the microbiome is a deep root, a foundational piece to work on. Now, I can remember back in the 1980s, when I first started practicing naturopathic medicine, there was one lab that did digestive analysis back then. And the possibility that the gut could actually make a difference on how much sinusitis there was, was like a new kind of concept.

But in herbal medicine, I remember my teacher from the 1970s talking about the need to make sure that the gut was functioning well, in order to have good basic health. And I think we look at traditional healing systems throughout the world will often come back to that. So when I work with with a kid with a chronic issue, whether that’s chronic asthma or stomach aches, or ADHD, or autism, I often look to see what is the quality of the gut, how is it working?

And now we have so many more sophisticated ways to look at that. But it’s one of the things that I think is important is to not just stop with the child’s gut, is to take a history as to what was the prenatal environment like, and how was the mom’s microbiome health during the pregnancy and or lactation? Because that definitely influences that dynamic. And I think often with chronic health issues with kids, particularly with neurological issues. And that the a topic issues, it’s, it is the prenatal environment, the moms predispositions it wasn’t there’s allergies in that picture, and the the overall toxic environment in our world.

I think that that can interrupt nutritional development, and then stress if you look at this, the impact of stress hormones on fetuses growing into uterine, you’ll find that there are direct calm, compromises that occur through growth and development, behavioral development, in the inter uterine environment is in fact as affected by stress hormones, and so forth. And so we, we now, I think of these things as multifactorial, it’s not just one issue. It’s multiple issues that have created this breakdown. And we have less than optimal, you know, physiology, or occurring in this child’s immune development or microbiome development or whatever. It is.

Vaish:

But it’s always it’s always a good idea to start with a gut you’re saying, right?

Dr. Mary Bove:

Yes, I think it really is. And I think with kids, there are some easy ways to start with a gut in the sense that you going back to food is medicine, many of the aromatic plants that we love in herbal medicine, like our mention, or rosemary, and our basil, and those types of plants have direct effect on brain development, neurological, you know, peripheral neurological development, and on gut, health and gut development in a child’s gut, and microbiome develops, you know, quite quickly over the first two, two and a half years of life. So there are things that we can do to encourage that by, you know, encouraging chamomile tea, or chamomile, fennel tea into their diet, or some spearmint tea into their diet or using some of those things in cooking, when you’re in introducing foods such as cinnamon and fennel, and those types of culinary plants that do bring nutrients to help with development of those tissues.

Vaish:

If I can, you know, Could you could you share with us maybe three or four herbs or plants that that parents you would you would you would recommend as part of a toolkit and how to use those, and how frequently to use those. So you would say do you have like a, like a group of plants that are your, if you don’t know anything about herbal medicine, just get these things and use them regularly? That kind of stuff? Yes,

Dr. Mary Bove:

yes, I was, I’d say my three like go twos for children, particularly children under the age of five, you know, that maybe a little bit more sensitive to taste would be fennel seed. Mm hmm. Kevin, male flowers and lemon balm,

Vaish:

nice in any form? Well,

Dr. Mary Bove:

I would say that all of those could be used in tea form. And all of those could be used in extract form. Now, no, the other thing is, is like if I had a cranky, like nine month old, I might actually use lemon balm and Kevin Mel’s tea is very strong in the bath water. Nice, as well as giving, you know, a teaspoon dose that you know, to calm them down. And that that would be the so these three herbes can be used as, as you know, foot bass or herbal bass, they could be used as teas, and you could get glycerin of those and use them. And those are sweet, right?

Yes, and those are sweet. So the thing is, is that when you extract a plant in alcohol and water to make an alcohol extract tincture, it that’s probably the most optimal way to get the most the broadest amount of compounds out when you extract it and glycerin it that doesn’t extract that broad of compounds so you’re more apt to be extracting that aromatic compounds the flavor the scent in some of those compounds that are attached to other sugars.

So So sometimes a glycerin isn’t the best form to use. But a lot of what it does extract it’s kind of what we’re we’re looking to use with kids so for lemon balm glycerin or mmm glycerin it, that would be fine. So I might be if I had a child who had any type of stomachache, gas, bloating, colic, constipation, I would use a combination of fennel and camera meal either as a tea or glycerin. Now like it say a child wouldn’t drink a tea maybe a three year old is not going to drink a cup of tea. So at that point, I might have an extract and use like five to six drops of each of those in a tiny little bit of juice or honey water or something that the child likes stuff to drink and quickly give it to them that way or with a dropper so that then they’re not having to drink a whole cup of tea and mom’s kinda, you know, force it down them, but they got their dose.

So they’re an extract like that can be helpful. But if they’re drinking like you know, some some cold water or a little bit of water mixed with a little bit of like a juice during the day and you fill up their sippy cup, instead of filling it with water, fill it with some chamomile tea and a little bit of splash of blueberry juice and every day they’re getting that Kevin male tea or a little bit of the lemon balm tea, if they if in that could be very useful and helping to encourage good digestion, no buildup of gas and to support the muscle layer in the gut if there was nervous tension, and I think we know that kids store their nervous tension in their gut often.

Vaish:

Oh, I see. And that’s that actually, this this this combination of teas and the way that you’re, you’re suggesting that they couldn’t get sounds really wonderful, actually. I mean, I would just assume that the, and you’re also building a tolerance to a different flavor profile? And yeah. What about older kids? would? Would it still be the same herbs? Or would you add anything on? Like, maybe kids older than seven, eight or so on?

Dr. Mary Bove:

Yes, so I think when we get to a child like seven or eight or school age going to school, we may want to add in things like elderberry and echinacea, those plants can be useful if they get an upper respiratory, cold, or they get a rhino virus, that type of thing. So and there’s a lot of, of nice preparations out in the market that combine elderberry syrup with eco Niche. So you can get them there kid friendly. We see now a lot more put into like dummy style. I’m not a big fan of gummies in the sense that, you know, they can bring their own kind of questions with that, whether it’s tapioca or gelatin and so forth. But I do think finding a way that it works for a child and some shot children, you may find that the only thing they’re going to take but many of those elderberry Serbs are quite palatable and quite nice mixed, you know, with a tea, or with water in their sippy cup.

Vaish:

I really love that. Finally, kind of changing tracks a little bit as this is, this is my last question is that what advice would you give practitioners who are not using herbal medicine in their practice? It’s kind of a quote, I didn’t put that nicely but or you can change that too. There’s a lot of functional medicine practices. And there’s people like me, we don’t necessarily know how to use herbal medicine. Right. So is there? Is there a way that we can integrate herbal medicine? Or maybe refer out or how do we bring in herbal medicine into our practice?

Dr. Mary Bove:

Yes, I think that’s a hard question in some ways, because there’s, I wish there was like one place to point to to get all that information. One thing I would say is that there are a specific curbs that have been kind of looked at over and over again with kids so you can find more research on it. So it might many practitioners find that they like to start with a few plants that that have been well researched for safety and efficacy.

Lemon balm would be one of those lemon balm and valerian have been looked at in combination quite a bit for ADHD, insomnia, hyperactivity, a number of aspects and, and same thing with elderberry and Echinacea. So I would say start by having a read of those plants doing a search and kind of looking at what’s there and get comfortable with that. Also, that herbes can be used in food forms. So going back to some something traditional like golden milk, where you’re using some teamwork with some spices mixed into a plant based or an animal based milk of their choice with that becomes a way in which they may feel comfortable and prescribing something like that.

And there’s many golden milk formulas out in the market now. So that a child might that a practitioner might find well if I do it as a, as a warm beverage or as a, you know, a culinary augment to it, that might be a good way to start. And there are resources more and more resources I think out there as far as published books on on working with kids. So we do see a few more herbes for kids are natural medicine for kids books out there.

Vaish:

I see. And thank you for that. And one of the things that thank you for your time in this podcast as well. One of the things that I am I’m taking from this podcast is the ease with which you’re saying that herbal medicines and just herbs in general can be used on a daily basis and you have some you know interesting ways like using them in a bath using them. You know you can smell Selling them and you said teas and tinctures.

I think he said glycerin said, there’s so many ways in which you can integrate herbs on a daily basis. I think I’m also guilty, at least for my son of using them on and off and many times in pill form. And just because I hadn’t given it that much thought so I, I really liked how you’re integrating herbal medicine into daily life and kind of looking at it from a different perspective than just popping a pill. Is there? Is there a way that that parents can contact you to work with you? Do you still work with? You know, one on one with clients?

Dr. Mary Bove:

I do some of that. And they could contact me through my email. Okay, which is horrible. I don’t know if I should say it, or I can

Vaish:

put it in the show notes. Okay, good. Okay, I’ll share. I’ll share your email in the show notes if that’s okay. Yeah.

Dr. Mary Bove:

That would be great. Thank you.

Vaish:

Thank you so much for your time, Dr. Bove. This was this was an amazing conversation. And it’s it’s always and this perspective is very valuable. And you put it.

Dr. Mary Bove:

that way. Yeah. Well, and thank you for your work in helping to get that out to all of the people who can help it get to kids and others that need that type of information.

Vaish:

Wow, that was really cool. Consistency is actually one of my issues and following through with herbal medicine. And it’s pretty clear from doctor what what Dr. Bove sets that consistency is specially KEY in this situation. KEY in capital letters right. Now, if you want to pick one change that you can do everyday going forward, you can pick one of the things that Dr. Bove says one of the herbs that she talks about, or you can go to functionalnutritionforkids.com/gut health. That’s one word for a free eBook with simple powerful changes to impact gut health. My signature course roadmap to attention and regulation, it’s often called Roar is opening up in a month and you can get on the waitlist at www.functionalnutritionforkids.com/roar. Again, that’s functionalnutritionforkids.com/roar. Until next week, happy Herbs. I hope you find a favorite herb that works for you. Mine by the way, is lavender. Bye

87 The Value of Alternative Communication with Danny Whitty

87 The Value of Alternative Communication with Danny Whitty

Danny Whitty is a nonspeaking Autistic and Apraxic man, who was unable to communicate his thoughts for 30 years of his life. He now uses S2C (Spelling to Communicate) to share his deep insight, advocacy, writing and poetry with the world.

In this episode, Danny shares about the people that have made a difference in his life, about how access to communication has completely transformed the way he shares, and the immense importance of communication and respect in the world of Non-Speaking Autistic people.

If you have an Autistic child who is either non-speaking or minimally speaking or “unreliably” speaking (which means that there is a body-mind disconnect, that older autistics often talk about where what one says isn’t really what one wants to say) – I do hope you consider RPM or S2C to take your child’s communication journey onward.

In this episode, Danny speaks about his experience with ABA, and how that might have led to even simple communication being unreliable (saying YES when means NO, for example). You can find Danny at https://dannywithwords.com/ and https://dannywithwords.com/the-ocean-… .

Learn more about Assuming Intelligence and Non-Linear Education at www.functionalnutritionforkids.com/nonlineareducation

Audio Transcription:

Vaish:

I’m really excited to have Danny with me on today’s podcast. Danny is a proud and caring Autistic man in Southern California. He’s a writer. He’s a poet. He’s an advocate and an awesome friend. for over 30 years, Danny was unable to communicate his true thoughts. His life has moved on since then, because he has been he’s had access to spelling to communicate. 2 of Danny’s ongoing projects are the “Ocean and US” podcast where he shares the wonder of the ocean and the need for inclusion in enjoying and saving it. And Leo in Bloom magazine which is centered on empathy and featuring diverse voices, including non speakers. Danny is also an advocate with the Spellers and Allies Advocacy Network. He has acted as an advisor for the educational guides for “The Reason I Jump” film. This is on Netflix, by the way, and he’s also contributed to the Neuroclastic music media toolkit and the ACES talking hopes to be a published writer one day, he loves to make more friends writing is his passion.

I have heard his poetry I love it too. And Danny’s really happy to share it with everyone. He communicates by spelling to communicate also known as S2C on a letter board with his communication and regulation partner. This is called a CRP and we’ll be using this abbreviation more. His older sister She’s a true ally. Danny and his sister are working on transitioning to a keyboard and on speaking skills. He’s also working towards letter boarding fluency with other CRPS.  Welcome, Danny is there anything you want to add?

Danny:

I am so happy to be here. I’m also really happy that you’re here.

Vaish:

One of the things that you know I that is so unique about you Danny is that you have a really good speech Have you always know had this good speech or is this something that came about later?

Danny:

Well, I was lucky to have a good kindergarten teacher who believed I could speak with help. It’s excellent. I was lucky to have 35 a kindergarten teacher who I could speak so she taught me how to make sounds with my mouth. And I remember helping him practice those sounds as kids. She was only good teacher in school.

Vaish:

I’m glad to hear you had a teacher you liked. One of the things that parents of non speaking kids or minimally speaking autistic kids get stuck in is speech and I often you know I think I got lucky that SID doesn’t speak because I would have not explored RPM. If SID was speaking and I wanted to ask you about you know, how speech what if? Let me rephrase my question a little bit. The importance of seeking out other communication methods when a child is speaking because there’s a lot of times if a child is speaking as well as you, that’s usually very rare people don’t explore other communication methods. So how important is it and why?

Danny:

So I am I’m unreliably speaking. Let me see, he might have written a little something about this earlier. No, okay. So I’m unreliably speaking, So, that means my words are not reliable indicators of my feelings. So I will say YES, when I mean NO And I feel this is an artifact, in a way, from ABA where I was disciplined for wrong answers and I was used to saying things that didn’t match my thoughts. Yeah, it’s so important to explore different modes of communication! Awesome.

Vaish:

Thank you for sharing that, Danny, that’s it’s hard to listen to, and I can’t I know it’s probably hard to share as well. But thank you for reiterating this, this idea of, of reaching out to other communication methods because it’s so hard when speech is taken as this Holy Grail and then a lot of times I’m looking at kids and I know that the speech is not what they’re trying to say, but thank you for saying that. Have you tried other communication methods like Whether that’s AAC high tech communication method or anything else before S2C, did they work?

Danny:

Not Yet, and I am so happy with S2C Aligning the grid!

Vaish:

Yeah, we just decided notice that we were exploring different AAC, some high tech AAC for SID. And that turned out so I think because he’s, he points to the letter board. And then it seems like if you just put an iPad in front of him, he pointed that but he couldn’t move his body in front of the iPad. So it was just like a harsh reality to not run after flashy things. And we’re also planning to stick with it right now. So I think I definitely made the mistake of of trying to go here and there. So we’re a little bit now, SID uses primarily RPM, but also some S2C. So
that’s where we’re sticking also like you Danny.

Danny:

By the way, I love his poetry so much! Awesome.

Vaish:

Thank you, I will pass pass that on to him and he will be very excited to hear it. He follows you very passionately on Instagram.

Danny:

His style is so special and powerful and inspires me! Awesome.

Vaish:

Thank you, Danny. That’s sweet of you to say and I will definitely pass on. SID gets very thrilled when he hears any praise from fellow poets. So I know that he’ll be flying for me time. I want to hear about some of the  good things that happened. I know that it must have been so exciting for you and your family when you finally found S2C. Can you share with us some things that changed when that happened when S2C came into your life?

Danny:

So he prepared a response to this big question. So he has a response and he wants to read it now. Okay.
Yeah, please do. My mom found RPM. I didn’t click with the first practitioner we tried. So I was skeptical about
the whole idea. But then heard about Elizabeth Vosseller and S2C and she brought me to try with her during a workshop in Portland. Pretty much right away. I felt a strong connection with Elizabeth Vosseller and her confidence in me was so powerful I could fluently spell with her by the end of the second day.

Wow. It was so amazing. And so absolutely universe opening. Now with my sister Tara as my daily CRP and my sister Era and now pretty fluent, and our mom getting there, and support from the team at Transcending Apraxia
that’s a center here in San Diego. I share so much more. Okay, and I am so  I’m so thrilled to be able to communicate my needs, wants feelings, jokes, advocacy, poetry and just conversation with loved ones. It is a major immense, astounding life changing transformation.

Tara:

Thank you Danny, are you saying something to add to his his bio that you introduced him with his
his dream of being a published writer. He’s now been published, including his article in Bon Appetit Magazine. That’s true. I’ve seen that. Yeah, that’s another one of the things that has changed his life and I am so eager to publish more.

Vaish:

I’m eager to read more of your writing. Danny, I have question for your sister, Tara is how long did it take for you to train as a CRP.

Tara:

I didn’t go through much training because I was living abroad for the two years prior
to moving back. And I was always traveling so much before that. So whenever I visit home, I go to Dawn Marie at Transcending Apraxia and sit in on his sessions. And she’d give me some tips and encouraged me to try and re practice but it was so patchy. And then when I moved back to be his full time CRP, two years ago, it was pretty, pretty fast. I mean, I think the pandemic gave us a lot of time to practice because he was Yeah,
neither of us were going anywhere. And you were just desperate for socializing. And you couldn’t go to Dawn Marie at that point. Within a couple of months of earnestly trying maybe yeah, we reach fluency would you say that? It’s hard to remember now. She is a natural smooth to work with!

Vaish:

That that is that is so sweet. Danny, I just want to tell you that Sid has very much the opposite experience with his sister. Who’s Of course only 11 but she is very patchy with letter board And yeah, work in
progress. That would be great  if they could be like you guys, that would be one day that would be my dream.

Tara:

You wanna say anything Danny?

Danny:

They are still young.

Vaish:

They are very young.

Tara:

I had to make a decision to resign from full time work and commit myself and I was in my I was 36. I was like, I’ve done a lot of stuff for myself. And our sister who’s four years younger, she’s now flown with Longer term, because, you know, she has her own career and life that she needs to establish now, so it’s definitely I think, a thing of timing to

Vaish:

Yes, you guys are both very inspirational the team. Your team is awesome.

Tara:

Thank you. Yeah, we love working together.

Vaish:

Switching subjects slightly Danny into something a little bit more controversial that you can choose not to answer, but it’s something that I’ve been feeling. And I’ll tell you a little bit of context, this is the question about whether intellectual delay is real. And the context is because, as you know, SID has Down syndrome, which basically comes with a with a definition, almost that Down syndrome is intellectual delay, he’s autistic. And he may have a diagnosis of cerebral palsy, which is a little late to diagnose, but a lot of his doctors think that he may also have that again and again over his life, perhaps even more than if he were to have just one of those diagnosis, people have really been very insistent that he has intellectual delay. And when he doesn’t, he obviously doesn’t, I’m thinking whether you know, this whole intellectual delay thing is just because we don’t know how to communicate with with people that have different needs for communication. So, I wanted to know what your take was or is?

Danny:

Wow, that is such an important question. I am not qualified to really answer it. What I will say is that it is
a human rights issue that So, many people are oppressed because their intellectual capacity is misunderstood. that’s an abbreviation even if there is intellectual delay, intellectual delay that needs to be much better respect and recognition of rights.

Vaish:

I think that’s very well said Danny, very well said thank you. Finally, I wanted to ask you what would an ideal education system and I realized that that’s a really broad question, but I could also rephrase it to say that you have anything you want to say to school teachers or school districts or systems that are listening to you, but
you could answer it either way you like my ideal education system or a message to teachers

Tara:

I will start with reading a response to the first explanation. Okay. Let me get to the response you prepared Danny and we’ll do the same thing. Ideal education system alright. Wow. I can’t begin to capture all my ideas. Simply put a system where the actual well being of students is the true priority. Yeah, it seems that schools are all too often battlegrounds and arenas for adult egos and ignorant policies. So anything else you want to add to that?

He asked me to share about the message he posted to special education teachers on his Facebook. First year of being fluent. So maybe a year and a half ago. He had a very negative experience in public school. And this was before S2C right? Yeah, I mean, he’s he was 30, when he … So yeah, yeah. But our parents were always in
there advocating. Like he’s much smarter, like, Yeah, well, you’re in the bathroom, I’ll explain. You know, he was doing high level math. And, you know, my parents knew he was smarter. But the special education teacher was so disrespectful to our whole family. And so getting posted on Facebook, just kind of as he’s starting to process some of the really difficult things he’s been through that he could finally communicate. He wanted to share on Facebook, how negative his experience in high school had been. And his closing  message was something like to special education teachers, you will influence your students lives for better or for worse, to try to be a voice for good. That was his. Yeah, I think that’s what he’s referring to. He’s just taking a quick bathroom breaks and no worries Yes.

Vaish:

And just thank you for that really in depth answer to the question on how you’d like the education system to change. And I think what you said is very good if schools were actually interested in the growth of the child as opposed to you know, just policy or budget or ego or or ease to the teacher, I think that would be a
much better place to get started. It is just getting their priorities right.

Danny:

Can you please ask Tara to mention my main support people in communication? I wrote a long reply. but I don’t think there’s enough time to say it.

Vaish:

You can say it Danny, I’m happy. I have time.

Danny:

Read it. I’m happy to summarize it too. But if you want to read it, please do. s u r e. So alright, let’s go to it all right. Excuse me. Besides, besides Elizabeth Vosseller, Dawn Marie Gavin from Transcending Apraxia
She is my S2C mentor and hero. She is my main practitioner that I’ve worked with, and she has helped my family learn how to be my CRPS. She is amazing and so visionary about building a community of spellers in San Diego. Alright. I also work with Johnny Perez, a practitioner at Transcending Apraxia. He is awesome and is
helping me to type autonomously. Brianna Williams is an S2C practitioner and SLP, who helped me greatly in working on my speech. I could speak before but she helped me so much with my enunciation and my confidence to try speaking more.

And then let’s go to Debbie Spangler is also an S2C practitioner, and family therapist. She is absolutely fantastic. And it’s helped me so much in processing my traumas, anxiety and the immense changes in my life now that I can communicate. It has helped me learn how to better regulate myself and dysregulation is my biggest obstacle at the moment. I feel that most spellers would really benefit from such therapy.  and of course my older sister Tara. She moved home two years ago to focus on my communication and transformed my life. She not only has been my everyday CRP but my advocate and mentor and creative collaborator and ally in all senses. She guided me to so much poetry, ocean sports and advocacy. She is my absolute hero. And then the last but not least I also want to mention my mom who works so hard to support my physical needs. And that is so critically important to my ability to communicate that is a point that is not appreciated enough. Yeah, anything to add?

That was a lot. But it is so important to show that takes a lot of support and that great support is out there!

Vaish:

Thank you to your entire team. Danny, thank you for mentioning your team and I’m also grateful to your whole team. It’s wonderful the way everything comes together. And that you finally found this, the phenomenal team actually to support you. Right. So that is and you support them too. So thank you, Danny, thanks. I hope I hope that many more parents will be inspired by your story and unexplored means of communications that are beyond
speech. And explore S2C explorer, RPM, whatever it takes for the child to communicate and understand that
there’s there’s so much beyond what they may be seeing as very apparent on the surface.

Tara:

I just want to interject and say obviously, the benefit to Danny is our main goal, it has been our main goal, and we wanted to be able to communicate with him but we really couldn’t have predicted how amazing it is for
us to as a family members, we gained so much. So I echo your hope that more and more parents and families are able to get to know their their non speaking or unreliably speaking family members through other means of communication. Yes. I’m so absolutely grateful beyond words for spelling. And I hope that more nonspeaking folks are able to able to enjoy the immense benefits of reliable communication and And that the world learns to see us as we are! Awesome!

Vaish:

As you said, Danny, I hope the same too and I think also to Tara’s point. I think it’s immensely important that non speaking kids you know, have access to communication in whatever way that works for them. But it’s, we also forget how immensely important it is for us to hear what they’re saying. And to for the richness that can just kind of come into your life that you never knew was there. Yeah, yeah. Yeah.

Yeah. Thank you. Thank you for being here. Danny, thank you for taking the time to talk to this group of parents, practitioners, everybody. Me!  My pleasure.

Danny:

Will you be at Neurolyrical cafe? Yes. Absolutely. All right. Yes.

Vaish:

I will look forward to seeing you there!