More proof of how young people with spina bifida live life to the full – and then some
Susie and Lorne Kelly of Barrie, Ont. privately adopted not one but two newborns with spina bifida and hydrocephalus. Today Kayla is nine and Brooke is eight.
The couple first approached Toronto Children’s Aid because they were sure there were children with spina bifida in the system. But the agency told the Kellys that they didn’t have the time to look for such children. Fortunately a social worker knew of a 15-year-old who had given birth to Kayla and wished to place her for adoption. A year later the Kellys adopted Brooke.
“People say, ‘Oh, you’re so wonderful.’ That’s baloney! You do it for yourself,” admits Susie Kelly.
“Don’t see just the negatives. There are lots of positives too,” Susie urges. “We’re overloaded with medical information that focuses on all the negatives. They forget these are kids. Yes, there are problems. All kids have them but they’re worth it. They’re more a blessing to us than we are to them. If you are considering parenting a child with spina bifida, come and visit us for a day.”
Both Kayla and Brooke are considered severely disabled. Both girls use wheelchairs, but the Kellys are grateful that Severely Disabled Children’s Benefits and Easter Seals have covered most of their extra costs.
When Kayla and Brooke were preschoolers, special-needs workers came into their home to address the girls’ physical and early educational needs.
Today Kayla and Brooke are part of regular classes at the local elementary school. Because they both have some learning disabilities, the girls share an educational assistant. They both bowl and swim, and each summer enjoy the Blue Mountain Easter Seals Camp.
The girls have two older siblings – a brother Lee, 16, and Nadine, 14. They were only eight and six when Kayla was adopted.
“It’s a normal family. They all fight,” admits Susie. “But my oldest daughter Nadine now wants to work with children with disabilities.”
Curt Salmon, 24, uses a wheelchair – to go places! He’s just graduated from Lakehead University in Business Administration, and he’s on the move.
When he was born in Kenora, Ont. in 1973, the medical specialists advised his parents to “let him die.” It took a doctor in Thunder Bay who heard of Kurt to say, “Hey, I can help him.” Now, a multitude of operations later, Curt is described by his mum as a “Million-Dollar Man’.
It has not been an easy time for Curt or the rest of the family. “There are changes we all had to make and it does take its toll,” says Andrea Salmon, Curt’s mother. “But it is definitely worth it.”
Five years before Curt was born, only 30 per cent of children born with spina bifida survived past the first year. In 1973, the chances had increased to 90 per cent. Andrea became involved with the newly organized local parent-support group. Today, after a career as a nurse and economic development officer, Andrea Salmon is executive director of The Spina Bifida and Hydrocephalus Association of Canada (SBHAC). She knows of many young people who, like her son, are on the move and living independent lives.
One of those young people is Tami Saj, also 24. “Sometimes people with disabilities are their own worst enemies, where accessibility issues are concerned. Yes, there are going to be buildings that aren’t accessible, or opportunities one may have to pass up. However, I do not believe it is the responsibility of the ‘non-disabled’ community to change their ways for me.”
Tough words from a strong woman. Tami wrote them and won a $1,000 (U.S.) scholarship in the Garaventa AccessABILITY essay contest.
“I believe it is my responsibility to fit into an already existing world,” says Tami. “I can relate on my own what I need to function in a particular environment. If it can be done, great. If not, so be it. Really, the person missing out is the one who doesn’t get my business, can’t employ me, or does not get the opportunity to meet me.
“I’ve been lucky,” Tami admits. “I haven’t had a lot of negative experiences in terms of my disability and my life, although I know people who have. I’ve just learned that if I don’t make my disability an issue, no one else will. It is a part of who I am, but not a big part.”
If there were any negative vibes when Tami was born with spina bifida in Thunder Bay, her mum, Elle Warner, didn’t pick them up. Elle says even as an infant, her daughter gave the impression, “I’m here. I’m going to live. I’m going to have fun. No one is going to stop me.”
Today Tami studies political science at the University of Victoria, and plans to pursue constitutional law. She has used a wheelchair since she was 16, but she can walk short distances, and she drives her own car.
“Kids pick up their cues from their parents,” says Tami. “My cue was to go out there and try new things. If they work, great, but if not, learn from that. If you don’t try new things, you won’t learn anything.
“For parents I’d say, ‘Give kids opportunities to overcome their limits. Try to forget the child has a disability.’ Whether they realize it or not, parents of kids with disabilities who are overprotective of their children put up barriers for them.”
Tami’s parents put her into the same activities as her two sisters – everything from Ukrainian dancing to piano lessons. At nine, Tami tagged along with her older sister to the Thunderbolts swim club and ended up making a huge splash.
By 12 she was swimming competitively for Canada. In 1988 she competed in Seoul in the Paralympics and again in 1992 in Barcelona. She eventually garnered over 60 medals. In 1996 she was inducted into the Northwestern Sports Hall of Fame, the first athlete with a disability to be so honoured.
What advice would she give to a disabled teen?
“It gets better! This is when you are most likely to feel insecure. All teens are going through much the same issues. Life is a bit more complicated with a disability but almost everything can be overcome with a positive outlook. This is a time to figure out who you are and where you want to go …. You need to tough it out and take from it what you can.”
Today Tami is politically involved with the Young Liberals and plays wheelchair basketball and tennis. Having trained with able-bodied athletes, she welcomes them to take part in wheelchair sports. “Get as many playing the game as possible. After all it is just a game.”