Ready, set, grow: How parents can help or hinder
Transitions panelists share tips on growing up with disability
Growing up is a challenge. But youth with physical disabilities face additional obstacles when leaving home, going on to postsecondary studies, job-hunting or dating.

Four young adults offered candid advice on what smoothed their journey in a panel presentation at Bloorview’s third transitions conference – called Growing Up Ready – in May 2006.

Julia Ferguson, 26, has a neuromuscular disorder and severe visual impairment and is looking for a job in recreation. The London, Ont. resident said her parents took their most important step in promoting her independence when she was seven.

“The school administration thought I should go to a special school,” Julia said. “My parents lobbied to keep me at my neighbourhood school. If I was sent to a different school, I don’t think I’d be where I am today.”

Scott Battan, 22, of St. John’s, Nfld., said his greatest challenge was losing an assistant in high school – a support he’d had in the elementary years.

“I ended up doing well for myself, so it was the best thing to happen to me,” said Scott, who has muscular dystrophy. “Being on my own gave me the perspective that I could go to university.”

The panelists acknowledged the tremendous support of their parents growing up, but also noted their tendency to be overprotective. “When you’re older this is not... good, as your parents won’t always be around and you’ll be left on your own to figure things out,” said Lindsey Maisonneuve, 18, a Sudbury high -school student with cerebral palsy.

Several participants wished parents and teachers had tempered warnings about how difficult some transitions would be. For example, when they got to high school or university, they said it wasn’t nearly as hard as they’d heard it would be, but the anticipation caused lots of stress.

Most parents shy away from the topic of sex, but need to be upfront about it, participants said. Parents need to be told, loud and clear, they said, that kids with disabilities will date and have sexual relationships.

“I think some of what we go through as people with disabilities is that other people don’t see us as sexual people – that we have a sex drive,” said Ashley Jones, 22, in her last year of social work in Thunder Bay.

Ashley expressed interest in boys in her early teens, she said, but her parents simply told her “not to worry about it.” She was excluded from sex-education classes in Grade 9 and didn’t learn about pregnancy until she was 20. “In general, disabled people are kept by the wayside because it’s seen as something they don’t need to know. It’s a real injustice.”

Because people with disabilities may have more difficulty dating, they invest a lot of energy in relationships, and may not be as willing to walk away if the relationship sours, Ashley said.

Teens need to learn about what to expect in relationships as well as the practicalities of dating. For example, it’s important to call ahead to a restaurant to ensure it’s accessible, Ashley said.

The most important tip for other teens is to speak up for themselves, Lindsey said. “Don’t be afraid to advocate for what you want or people won’t know and can’t help you. You mustn’t be afraid to ask questions, no matter how minor.”

A sense of humour is critical. One day with peers someone asked Scott why he’s in a wheelchair. “Because I’m too lazy to walk,” Scott said. The group laughed, then treated him like everyone else, he said.

“When put in new situations, trust yourself and know that things will work out,” Ashley said. “If they don’t, you’ll find a way around them.”

 

BY JOANNE MILNER
Bloorview Kids Rehab | Bloorview’s Resource Centre