Down syndrome info kit offered in P.E.I.
Last Updated: Saturday, October 31, 2009 | 7:10 PM AT
CBC News
Martha MacLean says Down syndrome children are more like other children than unlike them. (CBC)A new information kit is being distributed to parents of babies with Down syndrome in P.E.I.
It's designed to help parents better understand the syndrome and how it may affect their child.
"Most parents, I think, I'd say almost 99.9 per cent of them, when they do have a child with Down syndrome are devastated," said Martha MacLean of the P.E.I. Down Syndrome Support Group.
'You are going through a type of mourning, between what you thought you were going to get and what you got.'—Martha MacLean, P.E.I. Down Syndrome Support Group
She was overwhelmed when her daughter Margaret was born, she said.
"You are going through a type of mourning, between what you thought you were going to get and what you got."
There's also a lot of misinformation, said Lois Matheson. She remembers when her grandson, Colton Matheson, was born the family was told not to have high expectations.
"The first thing they think is maybe this child would never walk, or talk, or be able to go to school."
Colton Matheson is only in Grade 6, but says he wants to be a firefighter when he grows up. (CBC)Today, Colton is in Grade 6, loves basketball, music and long-distance running. He wants to be firefighter when he grows up.
"They go to fires, they have pagers, they have suits to put on and they have helmets," he said.
About 500 babies a year in Canada are born with Down syndrome, about a half a dozen of them in P.E.I.
They have an extra chromosome and may learn things at a slower pace, or in different ways.
They may also be predisposed to certain medical conditions. New parents of babies with Down syndrome used to get outdated, misleading, and mainly negative information, said MacLean.
But the new kit dispels some of the myths and provides accurate information about the different types of Down syndrome as well as the potential learning challenges and health issues.
"It's really important for them to know their child is child first, who just happens to have Down syndrome," stressed MacLean. "They're going to be more like other children than unlike them."
The kit is available through the Queen Elizabeth Hospital, Prince County Hospital and the P.E.I. Down Syndrome Support Group.
