The Agenda with Steve Paikin (Audio) - Raising a Child with Autism

Episode Date: April 29, 2024

In "Giaci and Me," Rita Miceli shares the peaks and valleys of her family's journey raising and supporting their son and brother Giaci, who was diagnosed as autistic at the age of two. As a mother, Miceli worked hard to teach her son many skills while as an educator for over 31 years, she's advocated to bring awareness to autism. Her memoir won the Best New Canadian Manuscript award and it is about finding joy, acceptance, and love in the challenges of her perfect, imperfect life. This story tells parents, friends and professionals that they are not alone, and that autism can be worked with.See omnystudio.com/listener for privacy information.

From epic camping trips to scenic local hikes, spending time outdoors is a great way to create lasting memories to share with friends and family. This summer, TVO is celebrating the natural wonders that inspire unforgettable adventures with great documentaries, articles, and learning resources about beloved parks in Ontario and beyond. Visit tvo.me slash Ontario summer stories for all this and more. And be sure to tell us your stories for a chance to win great prizes. Help TVO create a better world through the power of learning. Visit TVO.org and make a tax-deductible donation today. In her new memoir, Rita Michelli shares the highs and lows of her family's journey,

raising and supporting their son and brother, Judgy, who was diagnosed with autism at age two. Her book is called Judgy and Me, A Mother's Journey of Loving and Raising an Autistic Child. She's also an advocate for autism awareness, and we're delighted to welcome her to our studio during Autism Awareness Month. Rita, it's great to meet you. Oh, nice to meet you, and thank you for having me. It's a pleasure. I want to start with what it kind of feels like to be a published author, because I gather this thing started sort of 25 years ago. It was a bit of a parent's journal, and when you got it finished, you're holding a published book in your hands.

I know. What's that moment like? Incredible. Incredible. I think back and just the journaling was so therapeutic at the time. I actually started by writing down things that Judgy was doing because I was trying to wrap my head around what was happening. Because you're in such a fog, not knowing what is going on with your child and not having any answers. not knowing what is going on with your child and not having any answers. And as I wrote down his progress or his behaviors, I started writing down how it made me feel.

And as a mother, what the experience was like. And I just kept writing and writing and then kind of just put it in a drawer for many, many years. And then the TikTok kind of took off. We'll talk about TikTok in a second. But how did how did you even have i mean raising kids is tough enough yeah raising an autistic kid is exponentially more difficult how did you have the bandwidth to keep a journal um it was therapeutic like i said it it really helped me um process what was happening because um i i couldn't wrap my head around it. I have four children, and my oldest was 18 months older than him.

So she spoke nonstop, and he didn't. So I wrote it down to try to kind of monitor what was happening, and that's really, it really helped at the time. Not a coincidence, I gather, that this book is coming out now during Autism Awareness Month? No. Not a coincidence, right, right. this book is coming out now during Autism Awareness Month? No. Not a coincidence. Right, right. How did your son react to the book?

I wish I could say he understands what's going on. He doesn't have the cognitive ability, but he sees himself on the cover and he just loves looking at pictures. It's a sweet picture. It's a beautiful picture. Yes, and he's such a handsome boy and young man now. Indeed, with a beautiful picture. Yes. And he's such a handsome boy and young man now. Indeed, with a great smile. He is a bit of a superstar on TikTok. How did that happen? It's surreal, honestly, for our family.

Well, my twin daughters were two years after him. And it was at the beginning of COVID. And they were doing some art activities. And they just videotaped it and posted it. And people just couldn't get enough of Judgy. They just adored watching the videos. And then there were so many, like millions of views on certain videos that I think people, it resonated with other families, especially the one of him living as an adult in our home, with other families, especially the one of him living as an adult in our home, how we set up our home. That one has millions of views. And I can understand why, because that's such an

incredible fear for parents, the fear of the future and not knowing how your child will live. And so many people from all over the world, like we're talking England, Hungary, Europe, everywhere, reached out and were asking me questions of like, Rita, how did this happen for you? And how did you handle, you know, haircuts? Or how did you, how do you, you know, handle the fear of the future and all of those things? And that's really how I realized that I had to take those journal entries and put them together for those that, you know, to answer a lot of those questions for people starting their autism journey. He has an unusual name do you want to explain the name? Well he's actually named after my

father-in-law and his name is Giacinto so it's a custom for Sicilians and Italians as many Italians would tell you to name them after the patriarch, which is my husband's father. And so, but his name kind of, we shortened it because my daughter, she couldn't say Giacinto when she was little. So she just kind of said Giacinto and it stuck. So, and now we love calling him Giacinto. But in real Italian, it would be Giacci, wouldn't it? Giacci, yes. Yeah, Giacci.

No, I know, Giac be giacci, wouldn't it? Giacci, yes. Yeah, giacci. No, I know, giacci. Okay, I got it. When you, I want you to take us back. I mean, you pointed out your older child was very verbal, and then giacci was not verbal at all. And at what point did you think this is more than just, I have a quiet child? Yeah, I'm also a teacher.

I taught, newly retired, taught for 31 years. So I also had other children to kind of see. So I was comparing the differences. That's where there's an alarm that goes off in a mother's, the pit of your stomach, where you say, okay, I know there's something wrong, but what is it? I had never met anyone with autism. I knew nothing of autism at that time, other than watching Rain Man, which I think was very common at the time for people to know that as the first,

you know, person with autism. And I struggled with it incredibly because, you know, it's something that, you know, at the time I just didn't want this to be true. And once it really came to the realization that this is what we were dealing with after getting an official diagnosis, then we kind of started educating ourselves and tackling all of the things that we needed to. The thing about Rain Man, though, as Tom Cruise shows in the movie, he does have some incredible skills that other people don't have. Yes. Right? He can drop matches on the floor and instantly know there's 1,224 matches there. Yes.

Or he knows... He was a savant. He was a savant, right. Does Judgey have any of those unusual qualities? I think it's his charm that is his gift. He charms everyone with his smile, with his personality. I think it's his childlike behaviors as far as just loving life and loving being loved. And that's all evident in his TikToks. And I think that's what resonates.

He's smiling all the time. It's true. He's just got this most happy, glorious smile all the time. And his sisters just adore him. So I think that also resonates with so many people is to see the beauty in what he offers the world. You talk about actress Rita in the book. Who's actress Rita? That's the Rita that has to put on the face of, I can do this. I can get through this, even though inside I may have felt broken oftentimes. I felt that actress Rita would have to come out during functions that we had to go to or work even, like getting up every day for work

when my husband and I would have no sleep because Judgy would be up all night and being exhausted. So there's the actress Rita that would come out. You get good at it though, right? Yes, I think so. You can master it at some point. Right. Here's a quote from the book. You say, I envisaged myself carrying a tremendous number of bricks in my arms, but the heaviest bricks were the shame, guilt, and anxiety. What's that about? were the shame, guilt, and anxiety. What's that about?

I think it's, as a mother, you know, I carried him for nine months. I gave birth to him. I did everything right. And then you feel like you've done something wrong because, you know, that he doesn't have all the abilities that my other children had. And, you know, it's a mother's guilt as far as, you know, what went wrong. When in actuality, it took me a while to realize through talking with others and professionals that, you know,

I didn't give him hazel green eyes. I didn't give him the color of his hair that was given to him. And it's such a gift to accept him the way he is but it took me a while to get to that so the the carrying of those those bricks as i put it and and the load of it it was heavy but i had to carry it for a little while until i was ready to fully accept what we were dealing with did you always intellectually know that you didn't do anything wrong this was just an emotional reaction absolutely yeah definitely definitely like. Like I knew in my head that I didn't do anything wrong, but my heart hurt so much. Simple daily tasks showed the teamwork it took for your family

to do things together. For example, when you're boarding a plane, you describe, and here's another quote, John was breathing heavily. The girls were mortified and stressed, and I ached with pain, but we made it. So what's it like to have these sort of little victories along the way? It's triumphant for us. It's, you know, the little things that people take for granted, we don't because we know how much work has to go into it. And then to see the joy at the end of it, like even like when we go on a trip, we have to do the work as far as getting him accustomed to getting in the car to go to the airport or the virtual simulations of him watching how it will feel like to get onto a plane because his anxiety. Change is difficult for anyone with autism, especially my son who can't process the changes

that are happening in his environment. There's the sensory overload and all of those things that he has to kind of calibrate to. And we do all the hard work. He does all the hard work. No one works harder than him, but ultimately we set him up for success. And then we can say we've had so many beautiful family trips because he's been a part of it. Like we are not going to leave him behind. He's going to come and join us. And every task or every occasion, we tackle it in the same way. One of my daughters was married in August and we're preparing for my second daughter that's getting married soon. And we have to bring him to the venue to be

comfortable with the venue. We bring him to the church that the ceremony will be at and get him accustomed to what it will be like and things that he'll have to do. My daughters both want a special dance with their brother. So we practice that. And for my daughter that was married in August, we forgot to include one thing that we didn't prepare for. And that's his sensitivity he has to touch. And when we practiced her and him dancing at home, and he danced with therapists, and we all practiced how he would be dancing to the song

so he knew what exactly to expect and how to help him be successful, we didn't think about her dress being so beaded and how that would bother him. So he still managed to do such a wonderful job. He just hovered over her without touching her like he did in practice. But he hovered over her, and still, it

was such a beautiful memory that they'll have forever. And there was not a dry eye at the event, at the wedding. He figured it out. He did. You don't have what you'd call a spontaneous life though do you no definitely you've got to plan for pretty much every eventuality that judge you will be involved with definitely so you got to be like oh my god you got to be on top of your game like nobody else absolutely yeah and and you know what? It's our perfect, imperfect life. You know, we adjust, and like I said, nobody works harder than him.

And why wouldn't we to help him? How old is he now? 28 years old. Okay, that raises some questions about what happens when kids, quote-unquote, age out of services. Yes. Tell us about that moment. I mean, I guess after he turns 18, does your life change in ways that you didn't imagine? Well, you know, apparently, perhaps it's the government or society think they're cured at 18. That's not what happens. It's a lifelong disorder. Nothing changes as far as judges,

you know, abilities or inabilities or how he conducts himself or his, you know, life. However, the government seems to feel like they push us off a cliff where we're not harnessed with anything. And it's like starting all over again where you have to go on to another wait list because the wait lists are endless. So you're on another wait list for the adult sector. And then you have to go through the DSO. There's an interview process. And again, wait lists after that, once you actually have the interview process.

And it's excruciating for parents. I can attest to that because how horrible it is to have to repeatedly tell someone what your child cannot do. And that age you know should be doing. And it's exhausting, it's heartbreaking, and it's just like putting salt on a wound. You know, why does that have to happen? I don't understand.

And then what's offered as an adult is really sad. I mean, we have a housing crisis. It's that much scarier for someone who has a child with autism. Parents' biggest fear is what will happen when I'm not able to care for my son or my child. And there's wait list after wait list for housing. It's for group homes, I guess.

Group homes, absolutely. And we have set up our home for him. We've planned for this, knowing the situation. But it shouldn't be like that, Steve. It shouldn't be like that for parents. It's stressful enough to have the daily ins and outs of the way the system has failed us. So to continue to have that in your older years is disheartening. Can you give us a sense of how independent Judgey can be right now at age 28?

He cannot live alone. However, because of our behavioral intervention, he has learned so many skills. I always joke, you know, he does better laundry than my husband. And my daughter will joke that he taught her how to do her laundry. So he, with step-by-step instructions and rewards and, you know, we reinforce it and he masters it and we continue. And sometimes a skill may take a couple weeks. Sometimes it takes months. What about money? Does he know money? He knows.

We've taught him what money is and that. But the value of money to him really doesn't have any importance. Can he take a bus? No. We haven't taught that. How does he get around? He has to always have someone with him. He doesn't taught that. How does he get around? He has to always have someone with him. He doesn't understand danger.

And that, again, is his ability. Every child with autism is different. But my son cannot be left alone. He doesn't understand danger. So he always has to be accompanied by someone. So if he got to an intersection walking somewhere, walk, don't walk, red lights, green lights, none of that? No, we've worked on it. However, I think as his mother and my fear of him getting hurt in any way, I haven't

been able to venture into allowing that even. It just, I couldn't do it. Yeah. Now, when he was a younger kid, presumably he got services that a lot of younger children are able to access when they are of that age, before they age out. What kinds of, again, for people who don't know, what kinds of things was he given exposure to? Okay, so 25 years ago is very different than now. Things have changed. It's been an ongoing up and down of changes constantly over all these years.

So 25 years ago, we were on a wait list again, and it was for years, the wait list. And then when he finally did get picked up at the age of five, then he was going to age out at age six. So we were a part of the class action lawsuit that we were fighting the government because it was an injustice to finally get picked up and then to be dropped when early intervention

is so fundamentally important early intervention will determine and help the child for their future you know abilities in life i mean it's it's not hard to understand invest in them when they're young so that when they're older they won't be as dependent on the government and on society or the community. Invest so that they gain those skills. So when he was dropped at age six, my husband and I, we did what we had to do. And my husband worked more than anyone could or should have to work, seven days a week, morning till night, to be able to fund his therapy.

And it was something we decided as a family we were going to do and give him the best outcome we could. But, you know, governments are there to help us, and we felt truly abandoned by them. Tough question here. Do his siblings feel that they kind of missed out on stuff that their friends got to enjoy because you had to direct so many financial resources to your son?

I feared that so much. I was always fearful of that and conscious about it. So we would always make sure that our daughters had everything that they needed as well. They didn't go without. Yes, there were moments of perhaps being embarrassed if Judge E had a meltdown publicly or if we had to leave early at certain things, but they knew, they just adore their brother.

They've always had such a strong bond with him that they knew it wasn't something he purposely did. This is just how he is. We accept him and love him unconditionally. And so there was never any, oh, this isn't fair. It wasn't fair that Judgy, you know, didn't have the abilities they had. So they accepted it. Was there ever a moment where one of them said to you, dang it all, why can't he just be normal like everybody else?

They've never said that, but I think we all, as a family, wished he could have had more opportunities and more, you know, like others of his age. I think I'll always wish that, but, you know, it doesn't diminish the love and the, you know, the great joy that he gives us. And honestly, he teaches us so much. My girls have gained in so many other aspects in having a brother like Judgy. There's a level of empathy that just would not have been available to them had he not been the way he is.

Exactly. Yeah. Exactly. And you see that. Definitely, every day. Well, let's, in our last minute here, have you give... I mean, we've talked a lot about politics here today because this is a very political issue. Mm-hmm. Definitely. Every day. Well, let's, in our last minute here, have you give... I mean, we've talked a lot about politics here today

because this is a very political issue. You want to tell the education minister what you think he ought to be doing? Definitely. It's not enough. It's just not enough what's being done. More needs to be done. More funds, more supports,

more education, more awareness. It's not enough. It hasn't been enough for the past 25 years. And if it's not addressed, it will just compound. And I'm fearful of what is to come. These children, they become adults. They become strong. And many are aggressive.

And that will cause more strain on the medical system, on mental health, in all of those aspects. So more has to be done. The book is called Judgy and Me, A Mother's Journey of Loving and Raising an Autistic Child. You don't mind if I say you guys are heroic. Like, you really are. Thank you. Thank you for saying that. Above and beyond the call of duty.

It's just... Well, that's because of Judgy. Judgy gives us the power and strength to do more, and he is our hero. Bravo. Thank you, Rita. Thank you. The Agenda with Steve Paikin is made possible

through generous philanthropic contributions from viewers like you. Thank you for supporting TVO's journalism.