76 We are all Cognitively Intact with Jamie and J.B. Handley (Autistic Voices)

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

Audio Transcription: 

Vaish:

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

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

I’m really excited to have my friend Jamie here today. Jamie Jamison Handley is an 18-year-old non-speaker who was diagnosed with autism when he was two years old. Thanks to a new communication method called spelling to communicate. Jamie is now able to fully communicate and has switched from a life skills classroom and that’s within quotes. And I love that it’s within quotes. We can talk about that later to a regular academic classroom at his high school and he’ll be graduating in 2022.

He plans to attend college and study neuroscience. Jamie hopes to inspire others with his story and he wants to dedicate his life to advocating for the rights of all nonspeakers. He lives in Portland, Oregon with his family. Jamie is also co-author of underestimated an autism miracle, which is the story of Jamie’s journey to find a method of communication you’ve most likely read heard of or seen someone talk about this best seller.

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

Jamie

I’m really glad you’re here too.

Vaish:

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

Jamie:

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

J.B. Handley:

wrote I think fecal transplant help the most.

Vaish:

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

J.B. Handley:

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

Jamie:

Plenty of protein and fat good.

J.B. Handley:

Yes. Plenty of coconut oil. Pretty good.

Vaish:

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

J.B. Handley:

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

Vaish:

of anything that’s addictive. And yeah,

J.B. Handley:

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

Vaish:

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

J.B. Handley:

in 2004. When we removed gluten, it was a little bit of a challenge. Today, I don’t have any sympathy for somebody because there are duties bagels that are gluten free or delicious. The pancake mixes are I mean, you can completely live with normal hamburger buns? I just Yeah, yeah, they’re not there’s nothing that isn’t really darn similar, if not, in some cases better. That’s gluten-free. So I don’t think anybody has a reasonable excuse that they just apply a little bit of time to it.

Vaish:

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

J.B. Handley:

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

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

Vaish:

That is fantastic. That’s good to hear nothing hard. And his name is spelled h AR T.

J.B. Handley:

Yeah, biologics is the name of the clinic in Franklin, Tennessee. Yeah.

Vaish:

So, Jamie, some of the times when, in my overlap with the Biomed community, some of the times I’ve seen a lot of a fix it approach where there’s not a lot of presuming competence. And I think that’s coming in. But do you have anything you want to share from that perspective? Is there anything it could be an experience or it could be just a message to to people that are working in that field? How would it change if they actually presumed competence,

J.B. Handley:

All cognitively intact? So he said, We are all cognitively intact. And I do agree with your Vaish, I would just add my own little editorial that. I think that having kind of embraced the Biomed approach I and my wife as well. You’re It reinforces some things that I think are simply untrue, right, because my child has damaged their brain damage, we have to reverse the damage. Right?

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

It’s a theory, by the way, not something I can prove. It certainly comes out in the way Jamie kind of explains how hard it is to make his body do certain things.And so I hope that’s a real clue for people who are more who are neurologists or who are inclined to study it. It’s like maybe the genies of the world of which I believe all the nonspeakers are just like Jamie and he does too. Maybe they’re giving us a really big clue as to where that I don’t want to call it damage because I think that’s when the challenge or the problem exists within the brain itself.

Right. And anyway, it’s been a real, I think it’s been a real leap for a lot of these Biomed parents that I’ve been on the phone with some of the more hardcore ones who are good friends of mine, just it just takes a while to get it.

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

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

Yes, I would, here’s why.

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

Vaish:

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

J.B. Handley:

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

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

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

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

Vaish:

It’s already okay.

J.B. Handley:

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

That’s the harder-earned wisdom that you

Vaish:

and it taught you. I think there’s a big gap in acceptance. I mean, it’s easy when you’ve kind of crossed over to the other side, you say it knowing that it’s already true, but it’s so hard for someone who doesn’t see that future to, to understand and believe that,

J.B. Handley:

oh, okay, I was that person. And so I have, I have so much empathy for those people, and you’re never going to be able to, like, turn them into, like Zen beings, you know, a month after the initial diagnosis, I understand that. But to disabuse the idea that there’s a window, and there’s brain damage, and they’re never gonna this and never that those are the myths that I think are, aside from being completely false, or that really, really damaging to a family. You know, and, and, you know, we feel lucky that 17 we realize they were all missing, the impact of the quality of our family’s life has skyrocketed.

Vaish:

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

J.B. Handley:

You said you need to practice. I don’t like that. But okay. Weisz, I think one of the few reasons that I worry sometimes about putting Jamie on camera is because then parents who have children who struggle more with movement will conclude Oh, well, right, Jamie can do that. Because I just saw him, he sat in the chair for an hour.

My kid can’t sit in a chair for more than, you know, three minutes. So of course, they couldn’t do this, right. That’s so my fear is like by seeing how regulated Jamie is, parents of nonregulated kids will decide this isn’t for them, and they’ll never give it a shot. And Jamie has a friend who I won’t name by name, but who does have a lot more movement challenges.

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

Vaish:

And I want to bet that Jamie wasn’t, you know, as a child had his moments of dysregulation, too, right? Yeah. You know.
So it did take a lot of work to come here as well.

J.B. Handley:

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

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

The Dunmurry referred to that as top-down regulation. It’s sort of like, you’re calmer, because you’re happier, because you can communicate like they all kind of work together.

Vaish:

And I like that term, top-down, because we’re always trying to work Bottoms up. And then there’s top down too. Yeah, yeah. Because

J.B. Handley:

he’s just happier. Yep. Are we all? I mean, you have those moments in life, right? Where everything is kind of like, okay, and maybe you just had a great massage, or you just had a great workout, or you just had a beer or whatever it is that kind of, and you’re like sitting in a chair. And you’re like, Ah, I’m so you’re sort of at your most regulated?

Right, we all do that. And so the very act of being able to share with the world who he actually is, has been very regulated for Jamie, understandably, he used to be what much more movement, which is cool. So talking for your advice. I think parents need to hang in there. I think parents need to hang in there.

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

I mean, I don’t mean to make people feel guilty, but like they’re trapped. And so his parents were their only hope, you know, and I mean, I talked about this when the book was published. It was the reason that like, it just it wasn’t all written by him. It could have been questionable, you know, like the reason I jumped or something, but schipol we wanted to give the paradigm. We wanted to give the parenting narrative as if the parents don’t buy in the kid never get saved. themselves. Right? Right. But non speaker kid, pick up the phone and call Elizabeth Bosler and schedule an appointment. Right?

Vaish:

And it’s just a leap of faith that a parent is going to have to make in the beginning and like Jamie said, they have to hang in there they have to practice may be beyond anything else but it is the truth. There is no it this is not a skill that’s unique to Jamie and said and a couple of other kids and eat or anybody like that this is everybody is competent. Everybody has it in there. It’s a there is the brain and there’s cognition. And that’s fact.

J.B. Handley:

So, you know, I’ve honestly, I’ve lost count of the number of non-speakers who we’ve personally interacted with who now are open.

Well, she was counting. And my point is like, you know, I think we even say it in the book. Jimmy hates the word miracle that’s used in the title The book is called like, underestimated and autism miracle. That word was a publisher word. And he hates it for an obvious reason. Miracle implies You know, one of the million miracles implies a needle in the haystack.

Vaish:

And it implies something that doesn’t happen naturally. Right? Yeah.

J.B. Handley:

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

Vaish:

It’s 100%. There is nobody who has tried this consistently that, that it doesn’t work out for

J.B. Handley:

You Biomed parents are tough like Biomed parents putting the time, you know, generally speaking, tell me to say that non-biomed parents don’t. But we all know there are some parents who kind of hang it up in the authorities take it over. And there are others, who dig in deep. And one of the Biomed parents I know are grinders. And so as soon as they’re able to change their mindset, they’re all in. And that’s why I say that I’ve lost count, because and I don’t mean to, I mean, I celebrate each of these, quote unquote, miracles. But honestly, it’s to the point where when I get that phone call, and like, they’re just like, filled with euphoria, finally seeing the open words, yeah, like, whatever,

Vaish:

of course, thank you.

J.B. Handley:

Notice, Yeah, I know. I mean, you know, there’s only so many times I can like act surprised, right? Sorry. I’m not surprised. Like, you know, I was surprised when Jamie did it the first time, I’ll tell you that I was really surprised. And I shared it with every person I knew. Right? But I’m not surprised anymore at all, you know?

Vaish:

Yeah. I remember just as we wrap up, Jimmy, I just want to share one anecdote of mine is that we met a lady that we hadn’t met in a long time and said used as like a boat to spell Hi, auntie. And she was thrilled that Sid knew how to spell Auntie, and I didn’t know how to react to that situation. But But yeah, you know, these things happen.

J.B. Handley:

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

Vaish:

And I’m not talking about I want cookie, I want food. I’m talking about that. Yeah, yeah. Right.

J.B. Handley:

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

Vaish:

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

Jimmy:

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

J.B. Handley:

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

Vaish:

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

J.B. Handley:

Imagine a few years we’ll be like, exactly.

Vaish:

Thank you, Jamie. I know that a lot of people will be touched as they have from your book, but also with your with your interview.

J.B. Handley:

Thank you, Vaish.

Vaish:

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