NeuroDiverse Journeys: Embracing Challenges, Celebrating Triumphs | Nicola and Jo

Nicola, guest · [10:22]And at this stage, I moved to a school called Radford House, where I started teaching. And Radford House is a school for gifted children, and that's where my life actually changed in terms of being a mom and also in terms of being a teacher, because it gave me the insights that I would never have had in any other situation. I realized I was surrounded by neurodiverse kids, but they were all highly, highly gifted, and I realized that very often, not always, but it goes hand in hand. And what these kids, now that they were in an environment where these people got it, and they were given that space to learn the way they needed to learn, they were thriving. But unfortunately for us, I felt James had missed out on so much, and those foundations were still, it wouldn't have been fair to put him in the environment at that point. And I enrolled him in something called the Davis Program, which cost me something ridiculous, like a hundred thousand rand, but it's It changed his life. It, it was a, it was a dyslexia program. It's a huge international program, but they also have, an autism program too that's connected to it. And because of James needing it so intensely, that's why it was so, so expensive. It's normally like a three, four day course. He needed ten days. And also bear in mind, autism cannot, it, it, it's not a curable thing, but when you teach tools on how to manage yourself and how to deal with a lot of the symptoms, that's where the difference happens. And James learned incredible tools. His meltdowns cut by eighty percent, just because he, he learned, like management tools and how to regulate himself a little bit better. He, It just, it unlocked so much that he could function so much better because he could manage himself better and he felt more in control because a lot of it is about feeling overwhelmed and out of control.

Jo, guest · [20:52]His diagnosis came a little bit later. I think he was maybe four years old at the time. And, you know, I had suspected it. I had done enough research for us, thankfully, you know, Dr. Google was around, not that I'm advocating for Dr. Google, but I could You could research, you could look things up. Facebook was also a thing, so we had joined a number of Facebook support groups and, you know, just talking there. But I didn't have friends I could necessarily talk to. I didn't have mothers in the same space as me. So we went through, met some wonderful, wonderful people from Autism South Africa, and we got a slot to have him tested. And it was actually at Joburg Gen, I think, at the time that we had him tested, and there were different therapists there. And what's it called? The ADAS, that's right. So we did the ADAS. And so we got his diagnosis, went back to his doctor, and I remember so, like it was yesterday, you know, her sitting there and her words were, you know, you need to assume nothing and lower your expectations. And those are very heavy words for parents to hear at the time. And, you know, she actually didn't even mention at the time, she, you know, she didn't go like, oh, your son is on the autism spectrum. I think she sort of had assumed that we understood. And, and eventually my husband was like, what are you actually saying? Like, what is, what, what, what are we saying? What's wrong? And she said, no, well, your son, he's, he's autistic. I mean, it's, it's clear as, clear as day was, was her words. But going back to, you know, lower the, your expectations, it was some of the hardest words I've heard as a parent and some of the, I would say, possibly some of the best words at the same time. Because we do, as parents, we, you know, we hope a lot for our children. There's a lot of pressure we put on them. And at that stage, I took it all away. I took everything away from him as far as the pressure that I would have of him, you know, being on a first team rugby or, or doing anything like that. it just, I just put it aside. And this little kid actually got to grow up in an environment where Where he didn't have parents who were pushing him to do those type of things, and he found it himself. So grade one, he comes to me and he says, Mom, I'm going to do the ice Detford. And my face, my heart, everything just dropped because I thought to myself, oh my goodness, child, you've never been on a stage. I mean, he would sit in the, we would sit in the audience during, you know, concerts in primary school, and he'd be the kid with the headphones on in the back with us watching the other kids. So he'd never been in a concert. Now he's going to get up on stage and do the ice Detford. And he did it. And I think that's one of the great things you can actually learn about this journey is that when they, when you take away pressure and you let kids find it in their own time, they'll surprise you immensely.

Jo, guest · [29:25]And then probably one of the pivotal moments in our life happened. Jess said he wanted to go back to school. It had now been, you know, two years, past COVID. And I said to him, I said, well, Jess, tell me, you know, where would you want to go? and this is another thing, you know, is that, with maturity and so much intervention, Jesse was able to really articulate his needs. he's also incredibly bright, and this is, you know, such a juxtaposition to a child who's saying I'm stupid, is I had a child who also had, he just, he, loves history. He has such a passion for it. He was watching documentaries in the History Channel from the age of six. So he has such a, a passion and such an inquisitive mind and, a photographic mind. So, you know, when he's a child saying I'm stupid, but then he can recite, you know, programs and, and, you know, battles, great battles of our, of our, in history, I was like, something just doesn't fit with me. So he had said to me, Mom, I want to go to a school, but I want it to be small classrooms, you know, maybe 10 in a class were actually his words to me. And, you know, this is what I'd like to do. And so that's when we started to investigate. I was nervous to, you know, find a school that was just a home school type of environment because, you know, we'd been so programmed into keep it mainstream, keep it mainstream, keep it mainstream. And that's obviously when we came across Education Incorporated. It was December, everybody was closed, and we managed to meet in January. And I think that was really a turning point for us was all those years of struggling to find the environment where, you know, he would fit in. We walked into a space where he felt comfortable right from the get-go. And I think the difference was that, you know, he wasn't having to conform straight away. It wasn't you know, I don't know, it's so hard to explain, but you just know as a mother, when your child is happy, there is something that your heart just feels different. And I don't know how to explain it. You sleep better. I smile more. You know, your kid's happy, everything changes. And so, yeah, his journey with Edu Inc started then. we, Jesse actually chose to stay down a year. he probably needn't have, but, and this is something else, you know, I've just learned as a mother, he's a end of the year baby, and it was always going to be a struggle for him. He was always going to be young for his age group. And the opportunity to stay back, and it was something we were trying to do for a number of years. But again, when you're in a mainstream system where everything is, you know, cookie cutter shapes and it's in boxes, you really, you know, it would be a miracle to try get them to agree to keep this child down a year. And I just felt that from a maturity point of view, from everything that he That this would be something beneficial. And at the end of the day, that was something proposed to Jess, and that was something he chose. He said, actually, no, I'm tired of struggling. I'd like to, you know, have the upper hand. And that was one of the best decisions we've made for him. He's completely excelled from a child who said, I'm stupid, to a child that won the Dux Award at the end of his first year

Nicola, guest · [40:23]And then also, the early intervention, I was told when James was about four that I need to really prepare well for the future because there's no guarantee that he will be independent. he could very well need support as an adult. He might need to be in a facility where, you know, not, not an extreme facility, but just for an adult who would need support. And he's the furthest thing from that. And that's because I was like a chihuahua. I did not give up. I, I spent what I needed to spend. I went down every rabbit hole. I researched. I got every intervention under the sun and got as much emotional support for him and myself as possible. I leant on the support that I could get, but again, as, as Joe had said, it is very difficult when your child is among, not his peers per se, more like I've got friends, they've got kids, they're similar ages. So you just assume, oh, the kids can play together. No, never worked like that, just because it didn't work. It didn't fit because James Couldn't gel. And it is difficult when you see other kids thriving in the same environment, trying to explain why your child isn't and seeing that it can be very, very easy for certain kids and it's so not easy for others. So again, advocacy, education, and don't give up. Just keep going. Don't give up and reach out, reach out for people who've been there. That's the best thing I ever did. I'd reach out to people who had been there and now in turn, I'm reaching back to others who are at the beginning of their journey. And I've made that a huge part of what I do is to just guide people through this because the only way out is through and you're never fully out of it, but It, it becomes easier. It does. As you grow with it, as you learn, it does become easier and you learn to realize that to a large extent, it's a huge gift. And I know that can sound weird, especially to somebody who has no knowledge of, of the spectrum, but in many ways, it is a huge gift. And I would never want to take that away from my son. I'd want to take away the challenges that came with it and the discomfort and the difficulties, but his brain is incredible. And I embrace it and I love him for that.

Jo, guest · [45:08]The one thing I'm going to say is stop stealing your joy, because we were also told that. We were also said, you know, most likely he'll get to 16 and not be able to pack a suitcase for himself. You know, you'll probably still have to pack his bags, et cetera, et cetera. It's probably hard to find a wife. Stop. Stop right now. Think about what's happening today and how you can get your child through that. It's a step. It's a step ladder. It's not about the future. And I think that's one of the things that it just, it crushes us as humans, our spirits. I remember my husband, we had listened to a talk by a well-known radio presenter, also with a son on the spectrum, and he had mentioned how, you know, he could never take his son to rugby games because it was always too loud. And of course, I mean, you know, South Africans, we are the champions, and rugby is very important to us, and it's important to my husband. And I remember leaving that That talk in my husband's face and he looked at me and he's like, I'm like, as a father, it's one of the things I want to do with my son and I'm just, that breaks me right now. It breaks my heart. And at the stage, you know, our child is four, you know, and it breaks my heart that I'll never be able to take my son to a rugby game. And at that point, he stole his joy right there. My son is 13. Let me tell you who was screaming at the rugby, you know, and so don't predict it.

Jo, guest · [59:52]So I came into his room one night and, you know, we'd say goodnight to them, and we'd gone downstairs, watched some TV, and I came back upstairs. And so it's late, and he should be asleep. And I see this little boy, and he's just lying there, and his, you know, his eyes look, teary. And I'm like, Jax, what's, what's wrong? He says, no, mom, you know, I'm thinking about Fourways Mall. And so this will give perspective as well as to when this happened, because Fourways Mall has been developed for quite a while. And he said, you know, with all the developments going on at Fourways Mall at the moment, and, and the building and, and the demolition, I don't think people really want to go shop there anymore. So I'm like, okay, what is this, like, where's this conversation going? I'm thinking, why are we thinking about shopping at night? And he says, well, no, mom, listen, if people don't shop there anymore, then the shops aren't going to do enough business. And if the shops aren't doing enough business, they're not going to have enough money to pay their staff. And if their staff can't, you know, don't get paid and, or, or lose their jobs, how are they going to go home and feed their children? And that's when I sat back and I thought, my child, you are going to change the world, because I don't know how many children who are driving past Fourways Mall and looking at a construction site are thinking about the worker, the teller, the store, you know what I'm saying, the staff, not even the stores, just the staff, and how are they going home to feed their children. And for me, that was really just the moment where I sat back and I just thought, you know, if we could all just be a little bit more like you, the world would be a very different place.