PALINTOLOGY: PART 2 OF A SERIES
Sarah Palin: Special children, special needs
September 9, 2008
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Trish Crawford
LIVING REPORTER
Thanks to 5-month-old Trig Palin, we're getting a lesson in living with Down syndrome.
"The example of a family, a woman at her prime of her career, with five children and one with Down syndrome is not a bad story," says Krista Flint, executive director of the Canadian Down Syndrome Society.
She offers these facts:
Extra genetic material on the 21st chromosome affects intellectual and physical capabilities.
There are 35,000 Canadians with Down syndrome, which appears in one of every 800 births.
An estimated 80 to 90 per cent of pregnant women who test positive for Down syndrome do not carry their babies to term.
The majority of children with it are born to women under age 35.
We asked three adults with Down syndrome about their lives, and also spoke to four Toronto parents:
1. What challenges do you live with?
2. What are your joys?
3. Tell us the dreams you have for your children.
MARYANNE BRUNI, 51, mother of Sarah, 19
She's an
occupational therapist and her daughter attends Michael Power-St.
Joseph Catholic Secondary School. Sarah has a dog named Mac.
1. When
she was born, Sarah had surgery on her abdomen at the Hospital for Sick
Children within the first couple of days. Post surgery, feeding was a
concern, she couldn't suck. She was in hospital for a month, she was a
very sick baby.
2. She brings quality of life to others.
She's had relationships with people in lots of different places –
school, camp and volunteer work. She cuts to the core of the situation
and lives in the moment.
3. My dream is that she should
be part of a community as an adult that extends beyond her family. Her
two older sisters are close to her in age and they grew up playing
together all the time. She sees them go off and she has a dream she
will live with her sisters in an apartment.
HEATHER KAINE, 40, mother of Emily, 9
She's an audit partner at KPMG, Emily attends an integrated classroom in Oakville.
1. My
challenge is around her personal safety. She doesn't have a zone of
safety – if she wants to do something, she goes and does it. She's
friendly with everybody. You have to keep your eye on her.
2. She
is such a delightful little girl. She cares so much about everyone. The
first thing she says when she wakes up is, "I love you, Mummy." She
likes to help out, she'll set the table. She is such a lovely child.
3. I
would like to see her attend university or college. I think she's
intelligent and she works very hard. I would like to see her living
independently in an assisted living situation.
CAREN McCRACKEN, 53, mother of Michael, 17
She's a manager in financial securities and Michael attends Marshall McLuhan Catholic Secondary School.
1. After
Grade 6, the social network situation changes. Before that, the
differences aren't that great. He was in an integrated classroom until
the end of Grade 8 but in high school he is in a life-skills program. I
tell people, 90 per cent of him is like any other child.
2. We
never said he couldn't do something. Michael swims at the bronze-medal
level, has a blue belt in karate and he hs taken drums lessons. He's
now taking guitar lessons. These kids can do almost everything. It just
takes them longer.
3. We have set up our life so that
Michael can always live with us. However, we want to prepare him for
the fact that he will live independently one day. I asked him where he
wanted to do his co-op and he said HMV. He'd love to do something that
had music involved.
MADELEINE GREEY, 51, mother of Krystal Nausbaum, 19
She's a freelance writer who works from home. Krystal recently had a role in the movie The Memory Keeper's Daughter for Lifetime Network, and attends Heydon Park Secondary School.
1. It
was difficult in the first year, she had a lot of digestive problems.
She has had numerous ear problems and eight sets of tubes. She has
worked so hard to be independent on the TTC. She is such a tiny person,
it was a real leap of faith for me.
2. She's got an
incredible sense of humour and she cracks us all up. Making the movie
was a wonderful experience. Krystal was on the set (in Halifax) for a
week. She's totally into dramatics.
3. She's been having
a blast and would definitely like more of this acting. The fact that
she's motivated and interested is the thrill to me. We've talked about
how actors have to do something between gigs and this fall she will do
a placement in a daycare. My dream is that she knows what her dream is
and gets the support she needs to get it.
Janet Munro, Amy Glass and Kinga Szabo were
interviewed at the offices of the Down Syndrome Association of Toronto
where they were mailing letters and helping with clerical work.
Munro, 47, lives in a group home supported by L'Arche, a community for people with intellectual disabilities.
"I
like playing the piano and I was interested in a dance troupe in the
past. I work in the office and sometimes I write stories for the
newsletter. I love to read. I went to Stratford to see Music Man and to New Jersey to see The Producers. Our house went to Omaha for a wedding. I do love my nieces."
Glass, 22, lives at home with her parents.
"I
do drama on Tuesdays and I dance and I do yoga and I swim. I'm
independent. I watch TV, mainly the Family Channel. Right now we are
mailing and stuffing (envelopes) but sometimes I deliver the mail. I
will be going to the teen dance this Friday for people with special
needs. It is so much fun. It's amazing. All it needs is more guys."
Szabo, 30, lives at home with her mother.
"I enjoy reading emails and listening to CDs on the Internet. I sometimes play games on the Internet, like Who Wants to be a Millionaire and Deal or No Deal. My favourite TV show is Beverly Hills 90210.
Sometimes I do Bible study. I work here Monday, Tuesday and Wednesday,
and I work at a dental office doing the filing and at Winners putting
tags on clothes."
Toronto Star