This sister is solid gold

By Louise Kinross

Kaya Cosgrove, 10, wears metallic pink Doc Martins, loves the vampire romance series Twilight, and wants to be a labour and delivery nurse. She’s also sister to two brothers with autism—Liam, who is 12, and Phoenix, who is 2. Kaya’s mom Susan is raising the children on her own, so Kaya is a big support to her family. BLOOM asked Kaya about her experiences as a sibling.

BLOOM: What’s it like to have two brothers with autism?

Kaya Cosgrove: As the middle child, sometimes it’s hard because my older brother gets to do stuff I don’t get to do, and my little brother gets a little bit more attention because he’s really cute and a baby.

BLOOM: When your older brother gets to do things you can’t, is that because he’s older, or because he has a disability?

Kaya Cosgrove: A little bit of both. Think of it as a brother and sister and one has all the diamonds in the world, and one has all the gold in the world. Think of how that would make the person with all of the gold feel.

BLOOM: Do you mean that diamonds are more precious than gold?

Kaya Cosgrove: Not more valued or precious. Just that they get a little bit more attention.

BLOOM: Interesting! How would you describe autism?

Kaya Cosgrove: It’s having an older brother or sister that acts different from your friends and can also be sometimes very angry. And sometimes can cry.

BLOOM: You probably also see another side to your older brother that your friends might not, because you know him so well.

Kaya Cosgrove: Yes. He can be very sweet and very, very, very funny.

BLOOM: I know you are part of the Young Carers Program. In what way are you a caregiver to your brothers?

Kaya Cosgrove: I help my little brother with keeping him busy and safe when my mom does stuff. And if my older brother Liam has lost something, I help him find it. When we’re in public I help keep an eye on them.

If we’re at home and I see Liam is getting upset—we call it a meltdown mode—I would go tell my mom. She’ll tell him to calm down and do his deep breathing.

When they both start getting mad at the same time, it’s hard to calm both of them down at the same time. We have to decide who’s having the bigger meltdown.

In public, Liam is terrified of strangers—if a stranger talks to him or touches him. Once at a movie a stranger started talking to him and I said: ‘Excuse me sir. Please don’t talk to my brother. He’s autistic and he doesn’t like strangers talking to him.’

BLOOM: How did you learn to speak up like that?

Kaya Cosgrove: Just from experience. I feel bad for my brother being terrified of strangers. And I feel bad for not helping him, so I just learned.

BLOOM: I’m sure that in addition to hard things, there are amazing things that you love about your brothers.

Kaya Cosgrove: Yes. My older brother Liam can memorize stuff like movie dates and codes. It’s amazing. And my little brother Phoenix can count up to 189 and he’s only 2. And Phoenix can read the whole alphabet and read books too.

BLOOM: What are your favourite things to do with your brothers?

Kaya Cosgrove: With my older brother we like to play cards together. And with my little brother we like to play soccer. One of us will throw the ball and the other one will go and get it and sometimes he kicks it.

BLOOM: What advice would you give to parents who want to make sure that their children without disabilities are happy?

Kaya Cosgrove: Always make sure that the sibling is not jealous. So, for example, you could say: ‘Oh, are you okay about it if Liam gets a new computer?’ Liam’s iPad got smashed by a bully at school.

I get a little bit jealous when my older brother gets ToysRUs gift cards for the things he does with researchers. Maybe if he gets a gift card, we could split it up sometimes?

Make sure you have a very strong relationship with your child who doesn’t have a disability. If they want to do something just with you, try to set a specific date so your child has something to wait for that’s exciting. Try to find the time.

If you’re taking your special-needs kid somewhere, make sure that the kid with no special needs doesn’t want to go on a different day. Maybe they don’t want to go with their brother with special needs.

One time at the Exhibition my brother had a freakout and I didn’t have the courage to say: ‘I really wanted to come here, but only me and you Mommy.’ The child may want a trip to be just the two of you.

Sometimes the sibling really wants to come along to their brother’s therapy. I’ve gone to my little brother’s therapy and I was really excited. I like to see what they do. Because both of my brothers have autism I like to study things about medicine and I know a lot about medical things. I’ve always wanted to become a labour and delivery nurse.

BLOOM: What is the Young Carers Program?

Kaya Cosgrove: We meet with lots of kids who have the same experience. It’s for a child or youth who acts in a caregiving role at home. We talk about our feelings about our family and we sometimes do special events. We had a campfire where we got to show off our talents and my friend danced and I sung. We can share experiences and talk about ways to help your siblings. Sometimes we talk about ways to calm down when they’re getting more attention than you. We also did role-playing to learn how to stick up for your sibling if they’re being teased.

BLOOM: I guess the kids at the Young Carers Program understand in a way that some kids at your school wouldn’t.

Kaya Cosgrove: Having brothers with autism makes my life very different than my friends and many of my classmates. In my old school, this one girl would tease me about it, saying ‘My brother is all perfect.’

I read a book to my class about a girl who learns her brother has autism.

Every year I get the same question: ‘If he falls off a skateboard, would all the autism be cured?’ I have to tell them ‘There is no cure for autism now.’ Another kid asked what happens if you’re in public and your brother runs away?

BLOOM: It must be frustrating when you’re out and people see your brothers do something different but they don’t understand why.

Kaya Cosgrove: One of our therapists suggested we put a sign on my little brother’s stroller that says ‘Autistic child. Please don’t touch me and thank you for understanding.’

BLOOM: What is your relationship with your mom like?

Kaya Cosgrove: We have a very, very strong relationship. We always like to go on outings together and we always talk with each other. We watch TV together too.

A big part of our life is that my parents are divorced. My grandmother is a ‘gi-normous’ part of our family. We live down the street from her. She understands Phoenix and Liam really well. If they’re having a bad day she helps them, and she always helps me with my math homework. She has a very important role.

BLOOM: Is there anything else that might be useful to our parent readers?

Kaya Cosgrove: It can be hard for us to do things together as a family and I never thought I would get to go somewhere like Disneyworld.

BLOOM: Right, you got to go on a one-day trip to Disneyworld through Dreams Take Flight?

Kaya Cosgrove: Yes, I got chosen with three of my best friends from the Carers Program. We got a medal for being a young carer. We got to be on City's Breakfast TV with Jennifer Valentyne. That was my favourite part. And we got to take a fancy limousine to the airport. My favourite ride was Space Mountain.

BLOOM: So even though there are challenges about having a brother or sister with a disability, there are also good things. What would you suggest for another kid who maybe doesn’t understand that much about their brother’s or sister’s autism yet?

Kaya Cosgrove: Try to find them a book that describes a bit about autism or give some suggested autism sites like autismspeaks.org. I read a book to my class about a girl who learns her brother has autism.

I mostly learned about autism from my mom and my grandma too, and also from looking at my brother and seeing how he’s different from me.

Tell your child if they ever have feelings about their brother’s special needs that they can talk to you and you will never judge them. Tell them to never be afraid to talk to a parent, teacher, friend or counsellor. Anyone they feel safe with.

BLOOM: Is there anything you do, like writing a journal, or exercise, that helps you deal with stress?

Kaya Cosgrove: I’ve always wanted to write little notes when I get angry, then rip them up and put them in a box and the next time we go to a cottage, burn them. To get the stress out. I also have a fidget toy I play with a lot and stress balls help too.

Kaya Cosgrove is a member of Holland Bloorview's children's advisory. Her mom Susan is a family leader and member of the Research Family Engagement Committee. Kaya, below with Liam (left) and Phoenix (centre), is speaking about her caring role at an upcoming Dreams Take Flight gala. Check out the Young Carers Program.