So, my name is Donna Cappelli, and my husband is Gerardo. I have two boys: Dante is 17,
and Julian is 15. And Julian is the one who has a disability. Not only does he have like,
cerebral palsy, which is like…which just means that you’ve had some damage to your
brain. So, it can affect anything. It can affect your verbal skills. It can affect your
body, physically.
So, Julian has…it affects his body. So, he has no conscious control over what his
body does. And, on top of that, he has uncontrolled movements. So, it’s very difficult for him
to get through a school day, let’s say. So, he’s got to try to hold his head up
so he can see what the teacher’s doing. He has a hearing disorder, so he can’t always
hear. And then, if he tries to do something, his body very often does the opposite.
So, he’s always having trouble. Like, it’s like exercise for him all day long. Like,
he’s trying to get things, you know, so that he can see them. He’s trying to be
able to hear people. He’s trying to relax his body. So, it’s a struggle. Like, it’s
like him doing a marathon every single day. So, it’s that uncontrolled movement that
I find is difficult. Like, I can handle the picking up. I can handle the bathing. I can
handle the feeding. Like, to me, that’s not difficult. That’s just life. It’s
that uncontrolled thing where he can hurt himself. That’s what I think the challenge
is.
He has, like, the best little personality. He is like, funny. He is enthusiastic. He
is happy. And, like to have all these issues, and yet he’s still so happy. And, he’s
usually like…one of my advice is, is just, to live…try to live your live, normally.
Try not to get caught up in a lot of the things that you feel like you need to do for your
child. There’s a lot of things you’re going to need to do. You’re going to have
to do all these types of therapies for him. But, just remember, that that’s not everything.
That really, you have to look at the child, and see what he’s interested in. The best
things for us is when we just go and do something for Julian, and not worry a day about having
to do homework. And, not have to do therapy, and not have to stretch him out, and not have
to, you know, do his Hummer switch, and all those types of things.
With Julian, doing certain therapies doesn’t necessarily translate into better quality
of life. So, like going to physiotherapy, he’s not going to walk. He’s not going
to…you know, doing OT, he’s not going to be able to write. Like, he’s not going
to be able to live independently. So, you have to go, why am I doing this, you know?
So, we go to physiotherapy on a semi-regular basis, first, because he enjoys going there.
She stretches and she relaxes him. It’s one of the places where he feels like he can
actually relax. Like, he changes his body because he knows he’s in a place that somebody
understands his body. So, that’s why we do physiotherapy. If somebody was going to
put goals in front of me and say, well, today we want to have him hold his head up for 12
seconds instead of 10, I’d be like, forget this. But that’s where we were. Like, we
were actually at that place, right? So, that’s when I kind of said, you know what? This is
too much.
So, if I see results that translate into Julian’s comfort, his wellbeing, and his happiness,
then I’ll do it. But, I remember sitting there going: I’m so tired of this. I’m
so tired of going to every appointment. And, unfortunately…and I don’t think it’s
really their fault, but sometimes when therapists ask you questions, they tend to ask you what
your child can’t do. So…and they don’t mean to. Can he walk? No. So, you spend a
lot of time reliving what he can’t do, which is really depressing, right? Because, I’m
like, well, why doesn’t somebody ask him what he can do? He laughs really cute. Like,
you know?
Sleep is…it’s huge. Like, I’m obsessed with how much sleep I get, I think, because,
with Julian, too, it’s not always. What will happen is, if he goes through a growth
spurt it may be like, three to six months where we get…I get very little sleep. Where
I’m in his room every single night where I’m constantly adjusting him. But, I’m
really good with never fully waking up. So, I keep my eyes closed all the time. Our bedroom’s
on the third floor and Julian is on the second floor. I come down the stairs with my eyes
closed. I go and open his door. I feel for him in the dark. I fix what I need to, and
then I drop right down next to him and I fall asleep.
I’m a pharmacist by profession. And…but, I found it too stressful. Because, as a pharmacist…I
don’t know if you’re aware: you can’t actually open the store if there’s no pharmacist
on duty. So, when Julian would be sick and I had to start my shift at 7:00 o’clock
in the morning, and my husband has a meeting, what do you do? I’d have to pretend he’s
not sick. Give him some Advil, send him off to school, and then go to work. And, then,
hope that somebody else can cover my shift. But, it was really very stressful for me.
And, I think, even for my employers. They were, kind of, starting to feel like, oh,
I don’t know if I can have her working either, because she has to cancel for appointments,
and stuff.
So, my husband is a portfolio manager, and he works in the offices downtown. And, I just
started helping him with his business. So, I am his assistant. I work for him part-time
three days a week. And, I’m still a pharmacist but I just do relief work. So, I just work,
occasionally.
Donna:
What do you enjoy doing and what are your favourite things?
Julian:
I like reading my books.
Donna:
You like reading your books?
Julian:
And I like watching soccer. And I have a lot of soccer books that
I read. I lay down on the couch and I have, maybe, 20 soccer books that I read.
Female:
What do you like about science?
Julian:
It just makes me want to know more about the world we live in.
Female:
What is high school like?
Julian:
Hard.
Donna:
Hard.
Female:
What’s hard about it?
Julian:
Uh…
Donna:
What part is hard about it?
Julian:
Let me think. Hmm, hmm.
Donna:
Hmm.
Julian:
All the people you have to meet, making new friends and new support workers and new teachers.
It's just so complicated. It's because I try to replace it with digital computer stuff.
I try to replace it with computer stuff to make me happy and get distracted from the loneliness.
Female:
That’s great. [00:08:10]
Donna:
So, if you met a child that was, kind of like, a little bit younger than you but had the
same issues as you, what advice would you give them?
Julian:
Try what you like and it will distract you from your loneliness.
Donna:
You know how you hang out with Marjorie and Sallyanne, and all the kids; Ben and Sasha,
and everybody? And, everybody’s kind of got like, a different disability. So, being
around them, what have you learned from that kind of experience about other people, or
about disability?
Julian:
It’s okay to be different.
Donna:
Yeah?
Female:
It’s okay to be different.
Donna:
Hmm, hmm. Yeap.
Julian:
Yeah. I love being different some days, and some days I hate it.