What it’s like to have a sister with special-needs, AKA Boo-Bear

Meet the next generation of caregivers.

Ellery and Clare are sisters to Gilly, who has special needs. Gilly has high-needs autism meaning that she will never work or live independently. She requires constant 24-hour care and supervision.

Dr. Brian Goldman, White Coat, Black Art CBC Radio February 17, 2018

For Clare and Ellery, being Gilly’s sister has shaped how they see the world, and how they live their life. Right now, they’re both in university, but at some point in the future, they see themselves taking over Gilly’s care from their parents.

Your sister is different from the portrayal of autism that we see on TV in shows like the Good Doctor and Atypical.

Ellery: These are very good shows and I’m glad that they are representing people on the spectrum. But they’re representing the high part of the spectrum, what I call ‘the easily acceptable part of the spectrum’. Even The Good Doctor, he blends into society, you know? You don’t have to worry about him. He can cook for himself. He’s gonna be able to take care for himself. But with Gillian, you don’t see that side of autism portrayed on TV. That’s the other half of the spectrum. That’s the part that no one talks about. But we need to be talking about it because it’s the harder part to accept. And how can people learn to accept it if they aren’t exposed to it?

What’s the easiest first thing that the stranger can do to communicate with Gillian?

Clare: Say, “Hi.” She won’t necessarily say,”Hi,” back. Sometimes she needs a little bit of a prompt, but she acknowledges when you speak to her.

Ellery: The most annoying question people ask is, “What’s it like having an autistic sister?”

Clare: I don’t know how to respond to that. My mom puts it really well. She says that we are just working at a higher stress level than everyone else. That’s my normal. It’s like a constant.

Ellery: But when we get frustrated with Gillian, it’s more like a sister frustration. If Gillian is just like really in your face saying that she wants to do puzzle 37 times in a row, I’ll get annoyed. But it’s the same as Clare telling me over and over about a new boy she’s met. I’m like, “Clare, honestly that’s great but you need to just stop.” I think for us, it’s just an annoying sister thing.

What’s the most annoying question people ask?

Ellery: The most annoying question people ask is, “What’s it like having an autistic sister?”

Clare: I don’t know how to respond to that. My mom puts it really well. She says that we are just working at a higher stress level than everyone else. That’s my normal. It’s like a constant.

Ellery: But when we get frustrated with Gillian, it’s more like a sister frustration. If Gillian is just like really in your face saying that she wants to do puzzle 37 times in a row, I’ll get annoyed. But it’s the same as Clare telling me over and over about a new boy she’s met. I’m like, “Clare, honestly that’s great but you need to just stop.” I think for us, it’s just an annoying sister thing.

What has being Gilly’s sister taught you?

Clare: I can’t count the lessons that she’s taught me. She’s taught me to be patient. I don’t know how open-minded I would be if I didn’t have Gilly. Confidence-wise, she’s helped me so much. There have been so many times where we’ve been in public and she starts, like, screaming or something like that. All eyes are on you. Everybody in that room, everybody in that park is looking at you. And you know what? You’ve got to deal with it and you’ve just got to live your life.

Ellery: She’s also taught me that smarts come in so many different ways.

Has being Gillian’s sister in any way affected your future plans, and if so, how?

Clare: I’m going into nursing and I’m thinking about going into occupational therapy or psychiatry so, yes, she has a pretty heavy impact on my future.

Ellery: For me, I think Gillian factors into where I will settle down. If I have a career opportunity to move to England for a couple of years, I’ll do it when I’m young. But when I’m older I’ll be staying here. I’ll be staying near Gilly. We will be living in same city for the rest of our lives.

Clare: Yeah. We’ll be Gillian’s caregivers. She will probably live primarily with one of us or alternatively we’ll live together so that we can take care of her.

Boyfriends?

Ellery: Whenever you meet a boyfriend or someone that you’re interest in, you have to consider how they will react with Gillian. I’ve had boyfriends who are super great about it, and boyfriends who are less great. I always appreciate the ones who are really great because that’s my little sister, and you need to be able to handle her. That’s something that you, as a boyfriend, have to sign on for.

Clare: When you start dating us, you know what you are getting into. If you are going to spend the rest of your life with me, this is my sister and we are going to care for her.

How long does it take to work that into the conversation?

Clare: I’m very proud of myself. In high school, I had horrible experiences with people telling me like, “Oh, your sister is autistic, well this is uncomfortable” and stuff like that. It took me a while to warm up and now I’m like, “Hi my name is Clare and I have an autistic twin sister, how are you?” I make sure to tell people pretty early on because I don’t want to waste my time anymore on people who don’t accept her.

You want to spread the word about Gillian. Why?

Ellery: Oh man, it’s important to hear about this because there isn’t a lot of programs and support networks for older kids and adults with autism. It’s sad and it’s sort of upsetting for me, because I think a lot of your emotional development comes from when you’re a teenager and a young adult, and to see that not getting addressed by anyone right now is just upsetting to me.

What do you have to provide that those programs don’t provide?

Well, you try to provide sort of social networking for Jillian. You try to provide outings and get her out there and interacting with people. You have to provide care and support. Later in life, we have to consider providing where she’s gonna live and there isn’t a good option right now. It’s stuff that people think you don’t have to worry about, but you do.

This conversation has been edited for length and clarity.

Source White Coat, Black Art CBC Radio

Stories from this episode

Cake, balloons, goodbye: What happens when your special needs child ages out of the system – A day with Gilly, a teen with autism and developmental delay on the cusp of aging out of the system – and her parents who are expected to pick up the slack.

‘The community needs to step up’ says caregiver advocate – “Are we supporting families as much as we can for the whole duration of their caregiving experience?” asks Dr. Yona Lunsky who works with people with developmental disabilities and their families.