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Living Independently with Down Syndrome |
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Definition of Down Syndrome |
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 Down syndrome
By JAY ARMITAGE
Julie is a young woman living with Down syndrome. She has lived through severe health problems and difficulties at school. Now she attends high school and works at a restaurant twice a month. In the foreseeable future, Julie will move off the family farm and into an apartment with two girlfriends. Julie’s mother, Nette Timmermans, tells her story.Julie Timmermans spends hours in her room on the phone to her girlfriends. Posters of Kalan Porter and the television series Friends hang in her stars-and-moons themed bedroom. And she rolls her eyes when her mother gets the facts all wrong.
It seems like regular teenage stuff to most people, but for Julie’s family, these small examples of independent behaviour are victories to be cherished. DiagnosisNineteen years ago, Nette Timmermans lay in a hospital bed waiting for the nurse to bring her brand new baby girl back to her. But it was taking too long. She was starting to get worried. The deliveries of her other two children hadn’t been like this. So she asked the nurse again to bring the baby.
‘"The doctor will be back to see you soon,’ was all she said." When the doctor came in, he said Julie had Down syndrome. "I didn’t even know what Down syndrome was," says Nette, an elementary school librarian. "You think she looks perfect and you don’t understand what the doctors are telling you."
"Julie is one of about 800 people born with Down syndrome each year in Canada. Down syndrome often causes delayed mental development, common physical traits and health problems and is the result of extra genetic material associated with chromosome 21, according to the Canadian Down Syndrome Society. HealthLooking back now, Nette knows what she would say to other mothers who get the news their baby has Down syndrome. "I’d tell them the truth. I’d tell them they’ve got a rough road ahead. And I’d tell them it’s worth every minute of your time." Julie’s first year was certainly rough. Nette, then just 25, remembers how friends and family reacted to the news.
Some people came to the Timmermans’ farm in Strathroy to see Julie and some stayed away, she says. "And some people said stupid things like, ‘It must be the other side of the family.’" But it was more than just insensitive comments that worried Nette and her husband, Ken. Julie suffered from some of the severe health problems often associated with Down syndrome. She had a hole in her heart and her ear canals were too small for her to hear. By 16 months old, Julie had heart surgery and tubes inserted into her ears.
EducationAlthough Julie is still very susceptible to the common cold and pneumonia, Nette says her education has been a much greater hurdle than her physical health problems.
The gap between Julie and the other kids started to grow in grade seven. Nette says it was unreasonable to put Julie in geography and social studies classes. But her teacher at school disagreed. Nette says Julie was expected to be like everyone else in the class. By the end of grade seven, the Timmermans realised the situation at Julie's school was only going to get worse. "I was a basket case," Nette says.
They decided to move her to a different school. Their first stop was the local public school. Nette says she can remember the overwhelming relief she felt when she met the principal. "We spent one hour with her and she said, ‘Julie is welcome here.’" From that day on, the Timmermans have not looked back. Nette says she only regrets not doing it sooner. "She changed when she went into grade eight," Nette said. "She became more confident. For her, that was the turning point."
"Socially and emotionally, she just blossomed," she said. "It was a real contrast from her previous experience." Julie was in a special class for life skills and reading, but she participated in regular music, art, drama and gym classes. She even won the music award that year. Noble says she believes it is important to integrate children with special needs into a regular classroom as often as possible and to give them successes based on realistic goals. And that’s how the program was run at Adelaide – W.G. MacDonald Public School while Noble was principal.
IndependenceJulie is now in a developmental education class at Strathroy District Collegiate Institute. She will leave high school when she is 21, the age set by the Ontario government. Nette, now 45, says she’s started to think about what Julie will do when school is finished. She says that a group home is out of the question. "When she’s done school, we’ll have to take more responsibility," she says Julie has a job at a restaurant, she swims competitively and she plays soccer, but she certainly could not fill her day.
And like many teenagers, Julie says she is ready for more independence. "Two girlfriends and I are planning to move out of our houses and get an apartment together," she says. Julie is in constant contact with her friends Meg and Kim. They met in the developmental education class in high school. She says she talks to Meg on the phone every night. Nette says that all three families are supportive of the young women's desire to move away from home. They have contacted Community Living London to reserve a retreat apartment for Julie and her friends to try living independently, one weekend at a time. The young women will always need support from their families, but Nette says it will be an important move for Julie. "It’s not going to happen tomorrow, maybe when she’s 25. I hope I’m ready. I know she will be."
More on living independently.
RESOURCES & LINKSComprehensive health care guidelines for individuals with Down syndromeSpecial Education at the Thames Valley District School BoardOntario Ministry of Education Special Education Information |
You think she looks perfect and you don't understand what the doctors are telling you. 
Bev Noble agrees. Julie took to the new school environment immediately, said Noble, learning supervisor of special education at the Board of Education and past principal of Julie’s elementary school.
