Tiffany grew up with a brother named Ryan who was born with hydrocephalus (to much fluid on his brain) and after a complication with a shunt to help drain the fluid, he ended up developing cerebral palsy (CP). This affected his ability to walk, talk, use his arms, and interact with others. He could understand what you said to him, but did not have the ability to respond back verbally, which was frustrating for him.
Over the years, Tiffany and her brother were raised by their parents and then grandparents. In her story, Tiffany shares many ideas for home and community design that would be helpful for families who have a child with a disability, especially as they grow into an adult. Unfortunately her brother passed away several years ago, but her story helps show he enjoyed many of the same things that others do.
Location: Harrisonburg, United States
Watch the interview:
Notable quotes from the interview:
If you came and talked to him you would realize a lot more. Anytime someone interacted with him he would look at you and smile; obviously not respond with words, but you could tell he was paying attention and he appreciated you coming. And he would even sometimes, you know, hold his arms out for a hug or something. He loved interaction and touch, just like anybody else.
He understood when you talked to him he had other brain functions that worked perfectly. So, if you were to make fun of him or you know do anything like that or do something around him he knew he can do it he would get sad, you know.
He did enjoy watching other kids play and you know sometimes if it was someone
we knew or younger kids you know they might throw the ball to him or something.
So, he just kind of watched movies and stuff at home, but we tried to get him outside as much as possible. He had to do things that didn’t really require holding on like a swing. When he was younger sometimes he would sit on our laps and we’d swing, just to kind of get involved, but yeah there always had to be some sort of holding him.
[I would have liked to see him] have that opportunity to participate in something where they would feel like they were doing something special in some way and they could win prizes.
They can see you, they can hear you. They’re not blind and deaf, so just be careful of your non verbal expressions. Don’t treat them like a baby and talk babyish.