Neurodiversity in Israel, with Jacki Edry | EDB 256
Author and self-advocate Jacki Edry discusses neurodiversity acceptance & inclusion in Israel
(VIDEO – 27 mins) Jacki Edry is a graduate of Hampshire College and has recently authored her first book “Moving Forward: Reflections on Autism, Neurodiversity, Brain Surgery, and Faith”. She has an extensive background in education, writing, and marketing. She has been exploring the world of autism and neurodiversity for over thirty-five years, and shares her insights and ideas on her blog: www.jackisbooks.com.
Jacki is a survivor of complex brain surgery that left a lasting imprint on her body, as well as her neurological and perceptual abilities. She is also a parent of neurodiverse children. She has spent many years advocating for inclusion programs in the educational system and providing support for families of children with disabilities. Jacki resides in Israel with her husband, children, and dog.
For more about Jacki’s work: https://www.jackisbooks.com/
AUDIO PODCAST VERSION:
Or look for us on your favorite podcast provider:
iTunes | Stitcher | SoundCloud
FULL TRANSCRIPTION
HACKIE REITMAN MD (HR):
Hi, I’m Dr. Hackie Reitman, and welcome to another episode of Exploring Different Brains. And today we have all the way from Israel. The neurodiversity advocate, Jacki Edry, and Jacki is an author, a dedicated neurodiversity advocate. And she has some story to tell herself. Jacki, welcome to Different Brains.
JACKI EDRY (JE):
Welcome, and thank you so much for having me on the program. I’m deeply honored.
HR:
Well, I gotta tell you — reading your story and learning about you is just great. Why don’t you share with our audience a bit about your brain surgery and the impact it’s had on you.
JE:
Okay, about eight years ago, I had complex brain surgery, basically, it was a five centimeter round tumor discovered on the brainstem. And the head, the major nerves involved the central nerves as well. So it was a quite dangerous situation. And I underwent surgery and they couldn’t remove the entire tumor either, because because of the nerves that are involved. So I do have a little bit of a piece remaining in my brain. And when I woke up, I found that I had become neurodivergent, which is very interesting for me, because I have a son with autism. And I’ve worked with children on the spectrum for many, many years. And I also have other neurodivergent children, and all, all the things I sort of observed during the years I found were now part of me. So I was no longer an observer, was actually experiencing the things that the cognition and understanding of somebody who’s worked in education and therapy. So I’ve been on both sides of coin. And it was quite interesting to experience that, I mean, it wasn’t fun. It was really difficult actually, today, and I still have many issues. But it was an incredible learning experience. And we kind of figured that if I’d gone through such a learning experience, and it will be so useful with it and try and help others understand what that feels like.
HR:
I wanted to get that on the table first for our audience. So they know where you’re coming from, from your unique point of view. Now you can introduce yourself properly.
JE:
Okay. I don’t know where to start. Like I said, I’m, I have a background in education. My thesis was educating autistic children actually many, many years ago. And marketing, and writing, those are my three things that I’ve sort of gone back and forth with all the years and I’ve sort of put them all together to write a book and a blog and, and to try and help spread the word about neurodiversity, parents, of children. Every one of them is uniquely neurodivergent. And I spend my and I have a wonderful therapy dog as well in our house, she helps out all of our family.
HR:
Now you live in Israel, what is the state of awareness and acceptance of neurodiversity in Israel?
JE:
Israel in many ways, is a very, very forward country, or pretends to be but in terms of treatment budget for therapies. Inclusion in education and inclusion in the workplace. We are way behind. It’s very, very difficult for parents to raise a child with I think any disability actually, in this country. There’s not enough funding. Inclusion is practically impossible in the sense that because of limited funding with children who let’s say need a one to one assistance, and schools will not get the entire number of hours to cover the school day, or they’ll have untrained professionals. School teachers as a general rule are not trained. So when they even know what to do in closing as teachers are not trained to carry on in, carried out properly. It’s just a real fight for parents, especially parents who chooses to go over the role of inclusion as opposed to special education. Very difficult.
HR:
What would you you say maybe the social changes that need to go on in Israel?
JE:
I think that the society needs to become aware that everybody is unique and divine individual, and then everybody has something to contribute. And there is there is a bit of a trend. I mean, now we have a Knesset member who’s deaf you know, there’s there’s more awareness, there’s some we have Knesset members, also, wheelchairs are in various kinds of physical handicaps, that are more, but in terms of neurodiverse neurodiversity, there’s really a backwardness. There are some programs now for including people with disabilities or autism in the army, which is things are starting to move very slowly. So they recognize it. So sometimes people or neurodivergent, have unique talents that can be tapped into some high tech companies as well. But there isn’t that, you know, I think people with disabilities in general tend to live on the side of society, as opposed to being really fully integrated into communities. And people with autism tend to be separated into specific programs for people with autism. So what happens in that sense is that, you know, let’s say from my son who’s 24, and he does have quite a number of abilities. If I wanted to help him go into the workplace, there are like special problems with the club, all the people autism together, they don’t actually, there’s nothing that mixes people with different abilities together, is very, very, very difficult. And that needs to change. So if my son decided to make noise in the kitchen.
HR:
Well tell us more about your son,
JE:
My son on the spectrum is 24, he’s is got very limited verbal skills. Which is actually one of the difficult things because people don’t really understand that person with limited verbal skills might have a lot of understanding. So that will tend to make situations like especially with jobs or getting to know people, they will, they will not necessarily understand that he has high intelligence or competence that is there. He’s an amazing human being. He’s taught us all so much. And he’s very determined to grow and learn and make the best of himself. And he he knows is different, but he doesn’t think that surprised, you know, he’s just part of society, everyone’s different.
HR:
How are his writing skills?
JE:
In terms of spelling and things like that is able to communicate with alternative communication: Yes, he sees fine motor communicate motor ability, coordination is very difficult for him. But he types beautifully, so so that he does, although it’s very difficult for him to communicate in terms even with that much, much better than a spoken ability, but he it does help. And we we actually use whatsapp with him a lot lately, and that helps is starting to develop more of a fluid language and more complete sentences. And I would suggest it to everyone because most people have a cell phone, it’s like a regular thing to do. Everyone communicates at least here on WhatsApp. So you know, there’s a new reason this in pictures and he thinks in pictures actually. It’s very interesting. When there’s a new concept, the first thing that he does is it goes to Google pictures and he’ll type it in so that it can try and figure it out. And then after that he translates it into language because he wants to, he wants to communicate with people. But he’s learned language in order to communicate with people. But he is definitely — his mother tongue is not English it’s absolutely pictures.
HR:
But tell us about the rest of your family.
JE:
Okay, so I have at my daughter’s the oldest and she’s a sign language interpreter. She has a degree in special education as well, but she works mostly as a social activists. And then there’s my son that was just on the spectrum. And then I have a son of the Army soldier doing his duty, work and hard, proud of him. The son in in high school that just started high school and some have just started junior high school. And most of them have stuck with it whether it’s ADHD or auditory processing issues. Heerlen syndrome, which just made reading very difficult for several of them until we discovered the about 11 syndrome, they were diagnosed with dyslexia and ADHD. But once we discovered airlin, a few years ago, they were able to learn to read, that’s earliness, these colors lenders that you see I also have own syndrome, that can be genetic. But if I had it when I was younger, I was unaware. Maybe I had some problems with night vision, but I never had reading issues. My show my children who have Iran syndrome, actually, one of them was in the middle of high school, both the ends of high school, and he could barely read, and another one in fifth grade, and he could not read, then you tell me what to do. But then they read more than one or two sentences. And it’s, it’s incredible, because we didn’t really hear about it. And finally, you know, sort of, by the way, I heard about your own syndrome. And I remembered it from years back with Donna Williams, who is a very famous autistic woman, author and artist. She wants wrote about it on syndromes that she she couldn’t actually see an entire face without having her colored lenses. And, and so it sort of dawned on me, I took my kids to get them assessed, and in the evaluation, my child and it was 11th grade at that point, never could read more than a paragraph and a half. And then things would start moving around. Suddenly, right read an entire page 40 Many got colored lenses or coats, overlays on page. And I just stood there, I was shocked, because there’s not that much awareness, especially in Israel. And when I had my surgery, my vision went totally realistic. I mean, I would look at people in the faces with Mel directs, he thinks double stare, stairwells would give me vertigo, I actually could not look at a staircase, those stairwell, the whole thing would start spinning around. And I had no that perception, I couldn’t judge how far something was away from your nightstand and a road and the sidewalk would go up this insane stuff, right? And the minute I got my glasses, which is four years after my surgery, I stabilized my patient, which is incredible. Wow, yeah, it was like a miracle.
Overnight, I could suddenly walk out the door, and sort of feel normal or hold a conversation with somebody without having to mask and masking is something that’s often talked about with with century a century problems or isn’t, and have to work so hard to sort of fit in or you know, active, quote, normal and, you know, but I would stand and have a conversation with somebody, my neighbor outside and has in the middle of conversation, their face would split and they start melting and all kinds of stuff like that I fortunately had the cognition to have a conversation, my brain that would say to me, your eyes are playing tricks on you don’t pay attention it and try and carry on this conversation. But but it was very hard to do that, you know, because things look really weird. But at the same time, I imagine if I had been a child, and that had happened to me, there was no way I would ever, ever, ever have looked at somebody, because it would have been terrifying because you never know what their face was. And that’s a really important insight that I had, by going through this experience is that, that a lot of times people try and force people to look people in the eye and face you on the train and it’s doing that. And that’s that can be really scary and detrimental, traumatic event.
HR:
That’s an interesting point. I never would have thought of that. No, we don’t think of cause and effect many times. You think of something that’s not “socially acceptable”. Uh, tell us about your new book, “moving forward: reflections on autism, neurodiversity, brain surgery, and faith”.
JE:
Okay. Well, the book is really a journey. It’s a combination of all the things I’ve learned and experienced over the years where the first part of the book and the reason I wrote it basically was to help people which is really important. I felt like I had gone through this, this experience and I felt that it was unique and gave me insights that would be useful to people so I said, Okay, organize myself and my thoughts and put it all down because I think that people can benefit from my journey being that I’ve been on both sides of the coin. And in addition to understanding, reading, understanding about diversity, I also coping with tremendous challenge and fear and, and the process of recovery, which was and still is not easy. And what helped along the way because I think many many people go through incredible challenges in life and are looking for ways to feel mainstream understanding. And I think naturally during that process, I also started spent months sitting on the couch, wondering how I was going to take the four steps to get to the, to the bathroom or something. And that was a major, major, major challenge, because I didn’t have to do that without hitting the floor, because I couldn’t walk, you know, I, my balance was off and my, everything was off. And so you stuck on the couch, and not, you know, I was like, I was like one of those moms, it was, like, you know, trying to take on the Super Rule of Law, we have lots of kids and working and driving to treatments, and I was busy from early morning to late at night, every single day. And then I’m stuck on a couch, and I can’t even you know, get myself a cup of tea cup, I think for months. And in that situation sort of started thinking about what’s the meaning of life? And why am I here? And what am I gonna do with myself? And why did this happen. And that’s part of the journey.
So the book basically was the end result of the that whole period. And the first part of the book basically talks about all the different kinds of, you know, diagnosis and coping with diagnosis, sensory processing, and background information. It’s, I tried to write it in a sense that in a way that made it easy for anyone to understand, but at the same time, a professional could benefit from, from my viewpoint. And then I go through diagnosis, and surgery, and then a journal of recovery. And during that was, through my physical challenges. But also, as I was going through the challenges, trying to relate it back to the things in the beginning of the book, where I’m experiencing something that I talked about, and this is what I think about it, I observed this in my son, or my other children. And let’s see how that makes sense. And I tried to tie the whole thing together. And then faith was a part of that, like I said, the meaning of life and how faith inspired me and gave me You know, I am Jewish, and as part of being Jewish is a mitzvah with Jesus, there’s good deeds between people, and there’s good deeds between the person and God. And, you know, one of the parts of Jewish philosophies or belief is that as long as you can do one more mitzvah, you have something to do here on this earth. And, and I think sometimes people, you know, they want to give up, or let’s say, they retire, and they don’t know what to do, or they have suddenly, you know, somewhat immobilized or whatever the situation is, it’s kind of like, okay, I have to do a restart, and what’s the purpose of my life? And, and why should I bother getting out of the bed now, because it’s really difficult. There is something I need to do every day, I can, I can bring good into the world, I can do something that you know, some sort of mitzvah, whether it’s to help somebody else or, or something that I can do that, that commanded to do and the faith, that there’s a reason behind everything, even though I have very small brain, I can’t possibly understand why God did what he did. Or what why anything happens is real. But I try and understand I think it’s very quiet and, and listen to our inner voice. That’s the inner divine wisdom that we, that God naturally gives us. And we can sort of figure out what our mission is. And that’s, that’s one of my prayers every day is to sort of figure out what my mission is and to try and do it. The book was definitely part of that. And what we’re doing now as part of that.
HR:
Very well said one of our interns went on to birthright Israel and never came back. He loves it over there. Alex has been over there for a couple of years now has a great job. Loves it there loves it over in Israel, one of my best mentors ever. Dr. David Siegel. He used to be the head of Hadassah Hospital in Jerusalem. He was up in Boston when I was training there, you know, 100 years ago, Boston spittle hospital. And it was you know, it’s it’s interesting watching as an American Jew, watching Israel progress and change and go through all the other differences. great land of opportunity, though.
JE:
I came to Israel the first time when I was after college I studied grew up in there Long Island and I went to study the Massachusetts. And I just was curious, you know, I didn’t I didn’t grow up in a religious household either. Not at all. I mean, we produce, they have nothing. Because I didn’t have the background. And I just sort of came to keyboards to see what it was like it was curious. And one night, these two soldiers from the kibbutz said, have you seen Jerusalem? I said, No, let’s go check me in the car, and we drove up to Jerusalem was beautiful, was so beautiful. They took me right at the walls, near the walls of the Old City, a time on that particular area, which now can’t really go there comfortably. But it was it was peaceful there at the time. I’m talking over three years ago. And it was golden and beautiful. I step up a car, and suddenly, I hear myself saying, Oh, I’m home. And my ear says, What? What did your mouth just say? And I said, I don’t know how long, there was no reason on earth that should have. But I couldn’t get that out of my mind or my heart. You know, after like, my back, was trying to ignore that particular feeling, went back to New York after a couple months and got a great job advertising firm, and everything is supposed to go on my mind. And then just one day, about seven months later, I just bought a one way ticket. So well, I’ll be back when I finish what I need to do in Israel. And that didn’t happen.
HR:
Is there anything we have not covered that you’d like to cover?
JE:
I wish everyone would realize that we’re all we’re all different. And that’s what makes the world a wonderful place. And that everyone will be given an opportunity. And if people realize that, stop being so judgmental, that you know, a person is difficult to communicate, that doesn’t mean that they don’t, they don’t have somebody to you, and start trying to categorize people, you know, most people get diagnosed. And parents also for professionals, there’s one message I would like to give to professionals. Like, stop taking away hope from from parents, you know, a lot of professionals are sort of abusive this week outcome. My you know, your son will never talk, or you can’t do this or that. Nobody knows, nobody knows anything. And I think nobody about Norwich, city really understands. And like, and they’re always in a rush, the person has to progress. You know, from the time kids are in school, they start timing how quickly they read or how quickly they they take a test or whatever it is, and are in no rush out of chance not making progress quickly enough. And so they you know, like, slow down and see that everyone’s different. And the journey is what makes the difference. The journey, it doesn’t matter how quickly, anyone’s regressing. They just need to keep moving forward. Making sure that the person is is happy, trying to you know, parents or professionals just need to become scientist socialities, to look at the person and try and figure out what’s making that person do that. What’s difficult, how can I help? How can I understand this, but everyday observing that person and seeing what’s changed. And understanding that there are no quick fixes, retraining, cognition, overcoming sensory challenges, or things that take a long time. You cannot do them behaviorally in the year. They take years. But once the foundations are laid, if you retreat, if you’re organizing someone’s cognitive abilities, and it takes years to do that, but once that that foundation is set, then there is no limit to where the person can go.
HR:
Very well said no two brains are like they’re like snowflakes.
JE:
And that’s I mean, that’s why we’re all unique divine individuals. We’re not supposed to be. We’re not supposed to be.
HR:
Jacki it’s been great to talk to you today. Same here. Inspirational, the books terrific. And let’s hold up that book one more time.
JE:
Sure. And stuff that’s not in my book you can find on my blog. I’ve started a blog on my website.
HR:
What’s your website?
JE:
www.Jackiesbooks.com There is no way at the end of my name I passed one week. So nobody spelled my name right. Because I don’t have an E or Y at the end of it. It’s just Jackie with an eye. So it’s Jackie’s books calm and I do have a blog that I’ve recently launched there and there’s there’s articles on different kinds of thoughts. that, you know, the book couldn’t cover everything. I talked more about education and thoughts about ADHD. And there’s all kinds of articles on that.
HR:
We move forward to having you back also.
JE:
My pleasure.
HR:
The article you wrote for Different Brains was great. And we welcome more articles by you.
JE:
Actually, when I saw your site before I wrote you the first time I looked at the the philosophy of your site as exactly the place that I would like to be. We have the same philosophy and the same objectives and you know, the more and more we team up and then other people in the field, we can start changing the world, hey, we need to make a revolution. There’s there’s no question that things need to change. And, you know, if we have the tools and the to make it happen.
HR:
Well, Jacki, it’s been a pleasure to have you with Different Brains. Thank you so much. And we look forward to more of your articles, more interviews, and keep up the good work you’re doing over there in Israel and around the world. Thank you so much.
JE:
Thank you so much for the opportunity. I’m looking forward to collaborating — hopefully we’ll join forces and help change the world.
