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THE SJ CHILDS SHOW-Building a Community of Inclusion
🎙️ Welcome to The SJ Childs Show Podcast! 🎉
Join Sara Bradford—better known as SJ Childs—as she bridges understanding and advocacy for the neurodivergent community. This podcast shines a light on autism awareness, empowering stories, expert insights, and practical resources for parents, educators, and individuals alike.
Brought to you by The SJ Childs Global Network, a nonprofit dedicated to supporting autistic individuals and their families worldwide, this show is your weekly dose of inspiration and actionable ideas. Visit sjchilds.org to learn more about our mission, find resources, and connect with our growing community.
Catch us on platforms like Spotify, Apple Podcasts, and Goodpods—or tune in Fridays at 8:30 AM EDT on the Helium Radio Network’s Life Improvement Radio (Channel 1). Together, let’s foster a brighter, more inclusive world! 🌟
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https://sjchilds.myshopify.com/
THE SJ CHILDS SHOW-Building a Community of Inclusion
Episode 319- My Brain Surgery Revealed My Autistic Son's World with Jacki Edry
What if you suddenly experienced the sensory challenges your autistic child faces every day? Jacki Edry's life took a dramatic turn when doctors discovered a massive tumor on her brainstem. After surgery, she woke to a transformed reality - faces appeared to melt, floors became disorienting patterns, and everyday sounds overwhelmed her completely.
This remarkable conversation explores Jacki's extraordinary journey from being solely a parent and advocate for her autistic son to experiencing neurodistinctness firsthand. As the author of "Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery and Faith," Jacki shares how this dual perspective revealed insights that transformed her understanding of neurodiversity.
The most eye-opening aspect of Jacki's story involves the four years she spent virtually homebound with severe visual processing issues that numerous medical professionals couldn't identify or treat. The solution, when finally discovered, was shockingly simple: custom-colored spectral filters that immediately corrected her visual disturbances. This paralleled her children's experiences, who struggled with reading for years until colored lenses revealed they had been seeing words move across the page all along.
Jacki passionately discusses why parents must trust their instincts and continue searching for answers when conventional approaches fail. "Don't ever accept when a professional says there's nothing you can do," she advises, highlighting how solutions like Irlen Syndrome testing remain largely unknown despite their life-changing potential for many.
For anyone parenting, teaching, or supporting neurodistinct individuals, this episode offers rare insights into sensory experiences that are often difficult to understand from the outside. Jacki's story reminds us that sometimes the most powerful solutions aren't found in traditional medical settings but through persistent advocacy and openness to unconventional approaches.
Discover more about Jacki's work and upcoming projects at jackisbooks.com, and consider how her experiences might illuminate challenges faced by the neurodistinct people in your life.
Hi, thank you for joining the SG Child show today. I am so excited to bring a special guest and I mean, everybody is a wonderful special. But Jackie and I connected a while back and I just we both have such passion and, um, I just want to hear and share her stories with you. Um, without giving too much away or anything, please just introduce yourself and let us know a little bit about you and we'll go from there thank you so much for having me.
Speaker 2:I'm excited to be here and I'm excited to see you again and to speak with everyone.
Speaker 2:Hopefully our conversation will be interesting and informative. And here we go. So my name is Jackie Edry. I grew up in the States and I live in Israel. I've been here for many, many years and I am an author of the book Moving Forward Reflections on Autism, neurodiversity, brain Surgery and Faith, and I have a blog and an educator, part-time consultant, things like that speaker and I have everything to do with neurodiversity and I have my oldest son is autistic and I have other neurodivergent kids.
Speaker 2:Neurodistinct actually is a term I prefer, and I myself I'm very neurodistinct as 12 years, 12. Yeah, just recently, 12 years ago, I had a massive tumor discovered on my brainstem and had surgery, and when I woke up, all of my senses were scrambled and that changed my reality. And so I went from being a parent, caretaker and educator working with neurodistinct individuals to also being more neurodistinct than I was beforehand, to also being more neurodistinct than I was beforehand. Wow, and after that experience, I realized I gained insights of being on both sides of the coin. I decided to write a book to share those insights that I gained throughout that experience in order to help others, and so, in 2021, I published my book and since then, I've been looking up with people from around the world and speaking whenever possible and trying to get my message out, to help improve the lives of people who are looking for more information and different perspectives.
Speaker 1:And so much of that is necessary and needed. And so much of that is necessary and needed and to be able to have it come from such an authentic viewpoint, which I can completely relate to, as far as being on one side of being a parent and then getting my own diagnosis and seeing, wow, there is so much more here than I had recently realized and what a powerful, powerful gift to be able to share with families and educators. Like you said, tell us a little bit about what um and you know some of my viewers from the international events. They may know from other speakers, but tell us a little bit about what it's like in Israel, what the um, I guess society's viewpoint on autism and maybe the parent support. What does that look like?
Speaker 2:Well, it really depends. Israel is a very, very diverse country. We have people from all different walks of life and all different religions, so there is definitely no one answer for that. It depends totally on the community. Also, in terms of, let's say, if in the jewish community, I'm a religious orthodox woman, um, but it depends on the community you're in, because each type of the community, or different levels of uh, of uh keeping the faith, uh, have different um perspectives per se In terms of education and in terms of availability, government support and all this. We're definitely pretend we're a very modern country, but we do have a long, long, long, long, long, long, long way to go in terms of availability and quality treatment, particularly in the educational system, so that I'd say, comparing to America, there's probably we're behind for sure.
Speaker 2:One thing about the Jewish religion, though, if you are practicing in any way or maintain the faith, is that I believe every soul has come down to this earth for a particular reason. So if God made you, whatever it may be, adhd, they're distinct in any way, shape or form or any kind of whatever, it doesn't matter what it is, but that's the way you're supposed to be so many communities having that beliefs, then they can be, uh, more inclusive, yeah, or more accepting. It really depends. Like I said, we have been very fortunate that that's the attitude that people have had in our communities and in our synagogues. So my son, who was not particularly verbal, particularly when I was young and he needed very high supports, was always, always accepted and considered as part of the community, and now, as a young adult, he was very much part of the community and loved Wonderful.
Speaker 1:Yeah, you're so right too, and every community is so vastly different in their beliefs and their support that they can give, receive the education that they have. And there's a lot of work around the world to be done, that's for sure. Oh my goodness.
Speaker 2:We're definitely backwards in terms of inclusion. We are way far behind. I mean, my son was an inclusive, inclusive education, but I had a real hard time with it and unfortunately the the one-to-one assistance here do not receive um. First of all, the qualifications to be a one-to-one assistant are not on par with what like what, what I saw in the american system, and they do not receive the training that they need either. So it is very much, extremely difficult to do inclusion here in the educational system yeah, and I you know I would have no idea how to go about.
Speaker 1:Like where, where do you go to get that change?
Speaker 2:like you know what kind of government programs, agencies, agencies you know, I just thought all the years my kid was in school and I I trained and I I had a fight. I just had a fight like crazy, but it's tiring, but I did it anyway because I knew that was the where I wanted him to be and that's where I believed he would most benefit.
Speaker 1:So yeah, and it sounds like he did, if he's, you know, in the community, loved by the community and everything, and that's wonderful. No, question.
Speaker 2:it was good for him, but it's not for everybody. Everybody has their own path, you know.
Speaker 1:Yeah, it's tricky. That's a tricky thing for people that are just beginning their journey, people that have been on it for a long time, to recognize that everybody's at a different place and we just have to honor that individual, that parent that you know, therapist, that educator, whatever, wherever they're at in in the space that they're at. Um, how did you um start? When did you know you wanted to advocate write the book thing? You know, when did that start for you?
Speaker 2:Well, it started the book after my surgery. But my advocacy started many, many, many years ago when I was in high school I volunteered with an autistic child and we did a home program with a very child-centered, lovely program with a beautiful kid, and that was a long, long, long, long time ago. And then in college I also worked with autistic kids in summer camps and they were also very natural settings doing, even though they were practically nonverbal. Most of the kids I was working with we did stuff teen, we did whitewater canoeing, we did all kinds of fantastic stuff with them. And then after that I tried to do my thesis about how exercise would help reduce stimming, because I noticed that was happening in an intensive sport environment that we're in in summer camps. And I got a job at a school to do my thesis a happier program that I would be researching and it turned out that it was a behavior modification school, which is ABA in the newest form, but at the time it was called behavior modification talking in the late 80s and I realized that it wasn't for me. I did not believe in that way of working with children. It was totally opposite of everything I'd done. So I wound up changing my thesis to address that issue and educational different ways of educational, but a more child-centered approach.
Speaker 2:And from that I moved to Israel and then, a number of years later, I got married and then I realized my son. When he was about two, I realized that he was either deaf or autistic. So we did a hearing test and realized he wasn't deaf. And right at that point I realized that I had to advocate, because if I didn't then he would not have the services he needs. So I started doing that and then we put him in an inclusion program. We realized people didn't know. It was just they just passed a law enabling inclusion in Israel at that time and he's 27 now. Right, so it was quite a while ago, but it was a brand new law. They weren't even doing inclusion and nobody knew what they were doing. So at that point I started training teachers and doing advocacy there because, in order to ensure that he got what he needed and and the people knew what they were doing, I started working with that, with them.
Speaker 2:So, and that went on, parents needed support and then, naturally, I I started running a parent group and stuff way back when, um, but after I woke up from my brain surgery, I realized that I had insights, because I was no longer just the advocate or the parent. I realized that people don't understand what it feels like to be living with. Let's say, I have a lot of problems with sensory processing and a lot of hypersensitivity, particularly in the auditory channel. I had an unstable visual field until I got earling spectral filters, which gave me my life back after four years that I practically didn't walk out the door because I had so many visual disturbances. So I realized that people don't know what it feels like and oftentimes they are frustrated or they think a kid is lazy, not trying enough, or why is they tantruming? Or you know why are they having such a hard time? There's nothing that seems annoying. I don't know why they cry for no reason, all this kind of stuff.
Speaker 2:I said wait a minute, I got to explain this, I've got to talk about it because I know what it's like to be on both sides. I know what it's like to observe that and think, well, why is my kid tantruming? I don't see anything unusual. And then suddenly I live with the experience and suddenly this noise that no one's paying attention to is making me insane. Or somebody's perfume, or somebody's face looks like it's melting when I look at them, even though you know it's not happening, but it's all in my brain. But it's melting when I look at them, even though you know there's it's not happening, but it's all in my brain, but it's scary.
Speaker 2:So, as an adult and as a person who was not living with that beforehand, I could always reason with myself and say well, um, you know, that's not real what you're imagining. But if I had been a child and having those things happen to me, I would have been terrified and so I would have tantrumed and I would have fled, and people don't understand this. So I decided I have to write a book about that experience, to get that knowledge out, to help improve, like I said, improve the lives of those who need it, and many, many parents when their child's first diagnosed and you certainly know that I, uh, I did so much online research and people, people are looking for information, because the medical system just gives you the diagnosis and they send you home and you go. Well, what now? The pamphlet? Yeah, I didn't even get a pamphlet, oh gosh. But I knew I, I had background, but but that doesn't tell you anything, yeah, so I wanted to get information out there, give people practical information and tools and understanding. So that's been my mission since and still is.
Speaker 1:I love that and it's so important. You know, I me and my heredity actually we have outer ear microtia which actually gives me um and I probably have, um you know, sensory, a lot of sensory things also but, yeah, it's called outer ear microtia and just basically means that they're like smaller formed.
Speaker 1:But for in that I have and I've had some testing done I have one second longer hearing in each ear than typical people. But it's also with super high pitch which hurts, and you can appreciate. Not many people understand that and when I was I and I may have told you this last time that we talked but when I was a kid, the in the 70s, the garbage trucks didn't have the air brakes, you know, or anything, and they would come into my neighborhood and I would cry and I would cover my head and I would run into my room and hide.
Speaker 1:And it wasn't until, like maybe in the last five years, that I recognized my fear of garbage day, my fear of garbage day. And my husband, you know, we talked about it and he said you realize that, like you're in your forties, we don't need to be afraid of the garbage man.
Speaker 2:And I really like understood wow, this has really affected me for so, so long now, and I never, I never realized it. And so, yeah, now I'm, now I'm okay.
Speaker 1:That's amazing, though, that you've put the pieces together now. Yeah, oh it, it and it's all. You know that knowledge, like you said, it's so important. It's so important for these parents to understand when your kids covering their ears or something, it's not out of rudeness or out of, you know, disrespect, or they don't want to listen or anything.
Speaker 2:Um, look away they don't need to have visual disturbances because the person that has that doesn't know that they have it. They don't know there's something wrong. They think everybody's like them, especially children. They they that's right, so they're not going to come and tell their parent. You know, this is annoying me. They think everybody hears the same thing and they, they don't know that people don't see double or or the faces don't melt, or you know, I mean that's what I I discovered when I took my kids for an earlobe assessment. They were diagnosed with several of them with dyslexia and adhd, and and what turns out? They had earlobe syndrome and and um and auditory processing.
Speaker 2:Irlen syndrome is is a problem breaking down white light and it's corrected with college spectral fictures, if you get an earlobe, um, but so that the things would look like, uh, things were moving around the page and you know it looked like dyslexia, um, and they couldn't read.
Speaker 2:But they they weren't. They didn't say what they were seeing, because, and no one asked in a didactic assessment people do not ask that as well, which is crazy, right, but they don't ask them. Are the letters moving or the page turning colors? You know all kinds of things like that, um, which they do in a neural assessment, um, and they don't know to tell you because they just think it's regular. So that's an important thing for parents to be aware of. You should ask if the child is verbal and can't communicate, how they see things or how they hear things, or try and understand the sensory thing, and help, give them the words to express, and then you can see, you know, if they tell you well, the road goes up when I walk, or something which is actually what happened to me, or things like oh, really, you know they wouldn't have occurred to them to tell you that and you can get that information and find tools to help them.
Speaker 1:Thank you so much. That's just so valuable because I even my own kids I don't know if I've ever asked them that same thing so that's great. I love curiosity. I love to want to know more, especially about you, know experiences and things, so I really appreciate that. Let's go back to before you had the tumor. What prompted you to go get it checked out? What was the signs for you that you needed to go get it looked at?
Speaker 2:I was feeling exhausted all the time. I was just feeling like a car car, like the gas was running out, starting to like putter. I was very, very tired and I was getting, um, a stiff neck. I just I just felt like something was wrong and I got went to the doctor over and over again and they couldn't find anything. My blood work was perfect, uh, and all this other stuff, but they weren't finding anything.
Speaker 2:And then I started doing some of my hearing, and that was probably what saved my life is that my hearing on my left side was becoming, um, it was in normal range, but I didn't understand what people were saying to me. It sounded like people were talking to me through a wad of cotton or something, or underwater. Uh, one moment one and I was underwater, sorry, and and I couldn't. I just couldn't understand. And it just kept getting worse, although my testing was hearing is in normal range, like it's a developed, very severe auditory processing disorder in my left ear only, and so, after about a year of complaining that it was getting worse and worse and worse, uh, my ENT sent me for an MRI and discovered a whopping tumor on my brainstem.
Speaker 2:Uh, that had probably been there for 10-15 years. Wow, it was huge, I mean, for a brainstem. It is a very, very small part of the brain and I had a five centimeter round tumor on it and all my nerves were involved in. It was just one half a second, please. Yeah, you're absolutely fine. It was just one half second, please, sorry.
Speaker 2:Yeah you're absolutely fine, nice, right. Yeah, so, and my nerves were involved. It was very um powering. So within within like a couple weeks after receiving the results, the MRI was already on the operating table. Yeah, I'm lucky. I'm lucky that I couldn't hear my left ear, because otherwise it probably wouldn't be here.
Speaker 1:Oh, my goodness.
Speaker 2:Yeah definitely.
Speaker 1:And then you woke up and what was it? You realized and recognized first what was off. If you could say or I don't know, I guess now that the tumor is removed, my doctor told me.
Speaker 2:my surgeon said I was going to feel that way and he was not exaggerating. It was that painful everything. And because they tinker in your brain, then my, my brain, fortunately my cognition was not affected, but everything else was, and I. I had a really long surgery too. It was like 11 hours, I think, or 12 hours.
Speaker 2:And then I slept, I think, for another 24 or so. Fortunately, when I woke up I was no longer intubated. I started breathing on my own and they took out the tube because that wouldn't have been fun. But everything was off. I just, my body was disorganized. I didn't know how to. I had to relearn how to walk and probably talk, and didn't realize.
Speaker 2:Very quickly, and in the ICU I realized I was having problems swallowing. They told me I might. Very quickly In the ICU I realized I was having problems swallowing. They told me I might. I do have damage on one of my nerves On my left side. I can't swallow properly, I don't.
Speaker 2:At the time I didn't realize that I really had problems. I couldn't swallow, that. I realized very quickly that I was having problems. I couldn't eat or do you know. So that I realized very quickly that I was having problems. You know I couldn't eat or do anything like a normal person, or walk.
Speaker 2:But then I realized pretty quickly that something just seemed really off. I didn't know how to explain it. When they would push me in a wheelchair I would just get so dizzy and it didn't seem like a vestibular thing. I know I do have the damaged vestibular nerve on that side, but it was just something off. I would get dizzy and everything just looked weird. And that was already like while I was still in the hospital. And that was what turned out that, as a result of surgery, I had severe problems. Light in the hospital, um, I didn't know, it was lights at the time. It took me a really long time to figure out that that was the deal, yeah, but everything was blurry and I lost my, my depth perception, which is very weird, because I knew things were farther away from me, let's say, but I couldn't judge how far anything was, because every I got 2d vision right, yeah, um, and then staircases would spin around and all kinds of things like that, uh, and and the lights would dance across the ceiling and the, the lines and the tiles between tiles on the floor become parallel lines and and the streets would go up things. Um, it's just all visual disturbances, uh.
Speaker 2:And then I realized the hospital and it didn't go away for four years. I went to opt ophthalmologist, I went to neurologist, I went to neuro-ophthalmologist. Nobody knew or could put a finger on it. They were not. I don't know what they thought I was imagining. And then I got a colored lens. I went to an earlend provider, irlencom. She put a finger on it. They were not I don't know what they thought I was imagining. And then I got a colored lens. I went to an airline provider, irlencom she put a colored lens in front of my eye and all of that went away immediately. Wow, and not one person, not one professional.
Speaker 2:And I was hunting, I couldn't for four years. I could barely walk out the door, you know, and I couldn't even ride in a car because I would get nauseous, I would get vertigo and color color. That's it, a custom colored lens. And it went away. And I would think that you know, telling professionals these things, everybody would just run, run. Whether they saw a person had a first or second grader having, uh, reading issues, or somebody like me, um, they would first immediately tell them to get urine tested and they don't even, because it's not mechanical, they don't try and refer, even refer people, they don't even try to learn more about it, they just poo-poo it. Yeah, yeah, absolutely. I've been to so many educators and so many doctors and so many professionals and they do not work. Sorry, shh, sorry, someone walked in the door. You're good Noisy doggies.
Speaker 1:No, that that must be so frustrating and I I just can't. It's so hard that there's not some sort of like everybody could well now AI hopefully will will help us figure those things out a little bit quicker, but you know that there's not somewhere doctors can have this information to share with you and then school principals they saw in my case, once they they got diagnosed and they were having one was 11th grade and had serious problems reading.
Speaker 2:Fifth grade could not read. They had years of remedial instruction that didn't work. And then they got them colored lenses and they started reading. Yeah, like immediately, um, and you know they knew technically what to do, but within 10 minutes everything was moving around and they started reading. Yeah, like immediately, um, and you know they knew technically what to do, but within 10 minutes everything was moving around and they they just not one of them ever did it and I explained it all and not one of them ever referred other kids or they said what, oh, wow, it's incredible. I said, okay, so help all the other kids that you don't have resources to give them remedial instruction, you get them tested, maybe get them tested?
Speaker 1:Yeah, why don't they include it in some type of a?
Speaker 2:test. How many of them are feeling deficient? How many years of failing in school for no reason? Wow, I don't know. Things have got to change. That's crazy. That's why I wrote my book. Yeah, thank you. That's crazy. That's why I wrote my book. Yeah, thank you. That's why I write. You know a whole chapter about that? Yeah, just to get that information out there. If people find out, hopefully you know, more people will read my blog and my book and then and get that information.
Speaker 1:That's sort of what I'm trying to get out there, so that can help those people understand these things and look for the solutions yeah, because Because the more solution you know, the more we get the information in front of, the more people that they can share it with people and hopefully it can definitely make its way into a more mainstream understanding of something that would be helpful. And yeah, understanding of something that would be helpful. And yeah, it just really surprises me sometimes when these answers that people find going through their own experiences, yeah, and then they're just like hard to uncover, I suppose sure as a parent, just if you feel something's going on, just keep looking, just keep looking, just keep looking.
Speaker 2:Don't ever let some professional says, oh, there's nothing you can do, but don't ever accept that answer. Parents feel their kids, understand their kids and don't give up. Just keep looking.
Speaker 1:Yeah, absolutely. You know, don't give up, just keep keep looking. Yeah, absolutely, and there's so many different providers. How many providers for? Is it Irlan? Is that how you're going to? I are aliencom.
Speaker 2:There are lots all over the country. You could go on a website and they have. They have it's a worldwide thing. They have providers all over the world I don't know, I don't, I don't, I'm not aware you know, I, just I, I would fortunately have somebody who, um, who started a center. So yeah, but I don't know what's going on anywhere else in the world and what about your information?
Speaker 1:do you have a website that we can send people to go to um about?
Speaker 2:my website is j-a-c-k-i-s bookscom jackiesbookscom, and there's a blog on there and information about my book, um, a bunch of podcasts and things. Hopefully, in the near future also, we're launching a new thank you, a new section which will be called Organizing Minds and that should be launching within the next couple of months with a very dear my mentor and very dear friend who will be giving uh, giving him, uh, giving him a section on my site to show his work and it is incredible. I've been waiting for him for years to agree to do so. So I hope, I, I invite everybody to come and check out the site over the next few months and, uh, hopefully you'll find it interesting and helpful.
Speaker 1:Oh, absolutely. I really encourage all of my viewers and listeners to go to Jackie's bookscom J A, c, k, I, s, b, o, o K Scom. Make sure you go and support, check out the information, share the information. That's one of the most helpful things you can do, you know, is share with other communities that you might be a part of, share with groups that you might be a part of. I think that's a great way of spreading this information, especially with social media these days. Yeah, and we really appreciate the the information, all of it really, and the work you're doing and the passion and advocacy you have for helping, and you know a really special. It takes a really special heart to put your passion in kind of what you do to help communities worldwide. So, thank you, thank you so much for what you're doing.
Speaker 2:I appreciate it. That's very heartwarming.
Speaker 1:Well, it's a. These are answers. Like you said, that we go to seven different doctors for that, no one can put the pieces together. But, like you said, don't stop looking, keep searching, keep. Hopefully you find this podcast and run across it. Ai, give us the, give the information to everyone that needs it. So, yeah, it was so nice to to catch up with you today and I really hope that you know your message just keeps moving as far as as it can and educators and doctors, you know, take it more seriously or just realize the importance of having all of the information out there that can help these families and individuals.
Speaker 2:Thank you so much.
Speaker 1:Absolutely. It was so nice to get you know, to catch up and I know that it's probably in the middle of the night or something there for you.
Speaker 1:Or what time is it there? It's pretty late. It's not so late, it's only 830. Okay, good, yeah, yeah, yeah, that's right. We, when we talked, I remember we we tried to get it not too late. But I appreciate you taking the time in an evening and everything. So it's so great to chat with you and and I look forward to staying in touch absolutely, and I thank you so much for the opportunity absolutely. Thanks so much, and let me know if other books come out in the future. I certainly will.
Speaker 2:Okay, thank you.
