Sloane O'Hare

Interview 9/25/23

Background: My name is Sloane, and I'm 13. And my little brother Alec is 5, and he has CHARGE syndrome, which affects his breathing, talking, and eating

What is your everyday life like with Alec?

He can’t really talk, so me and my parents usually work on sign language with him. And we teach him simple signs. But sometimes it’s hard because I don’t really know what he’s saying, and he’ll just point at stuff, and then I get confused, and he’ll get really mad because I can’t understand him. I also try to include him in board games and making art with me. And I help him with his daily tasks, and I explain his words to other people. 

Do you explain Alec’s conditions to your friends?

I always tell my friends when they come over. I explain to them that Alec is different, and I tell them about CHARGE syndrome. 

Do you worry about Alec’s future?

Yes, mostly recently because he’s going into kindergarten, and I don't know how the other kids are going to treat him. 

Do you ever feel like you get less attention than Alec?

Yes, even though my parents do a good job of evening out the attention. But Alec does need a lot of attention because he will have tantrums and throw things. So my parents might have to focus on that. I usually try to help my parents, but he might try to hit me, so my parents ask me to stop, and I will stay away. 

What are some ways that your parents have supported you?

My parents explain stuff to me, and they try to give me one-on-one time. Alec has to go to the hospital a lot to get surgeries, and they always explain what he's having worked on and ask about how I'm feeling. And we usually go and visit him. 

When Alec goes to the hospital, how does that make you feel?

It makes me feel scared, and the house gets really quiet, so that is nice for homework but still weird because I’m not used to it. 

Does your brother come to events in your life?

Yeah, he comes to a lot of my events. He comes to my cheer competitions. And he really likes going to those because there's a lot of people and music there. And he likes to dance. So yeah, that's probably one of my favorite things to do with him.

Is it ever difficult to go places with Alec?

It's pretty difficult because if we're going on a road trip or spending the night, most of our car is taken up by his stuff. And also, we can't really go out to dinner because it's really hard for him to eat normal foods through his mouth, and he throws temper tantrums. And it makes it hard for us to enjoy that time, and we have to focus on him.

When Alec was born, did your parents explain his condition to you?

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Well, Alec was in the hospital for the first two years of his life, so I never really saw him before he came home. And then, when he came home, my parents explained to me a little bit, but mainly because he had a feeding tube, I began to understand.