Support group for parents of children with disabilities seeks foundation status
For any parent, getting the diagnosis their child will be severely disabled can turn their world upside down -- and when there is very little support, life becomes that much harder.
It's only been a couple of months since Isabelle Nadeau received the official diagnosis for her son.
Little Louis Bolduc has Angelman syndrome, a neuro-genetic disorder that causes intellectual disabilities. Though many who are diagnosed have a happy demeanour, it also causes sleep disturbances, seizures, and a host of other difficulties.
“He cannot sit by himself,” explained Nadeau “If I want him to play, I need to be behind him or he will lay down, but I don't want him to be laying down all day.”
After many months of seeking an answer, he was diagnosed at 20 months, a tough time for Nadeau.
“I had difficulty concentrating, difficulty focusing. I had a lot of anger. The diagnosis was devastating… You have to adapt to the situation that you have a kid that will be different,” she said.
Nadeau spends every day doing exercises to keep her boy stimulated.
While they are adjusting, there’s another big challenge: Nadeau said she finds it extremely frustrating there is simply no support.
“I learned now that my life, I will have to fight,” she said, adding that she can no longer work fulltime.
“For now, if I want to have support, I have to pay, and I have less money because I am working less,” she said, adding that they are on a waiting list for government subsidies, but it could take months before they receive any support.
“It's not normal. You just learn that you're all by yourself. Alone. Waiting on waiting lists,” she said.
Her scenario is far from unique. That’s why two years ago, Nathalie Richard started up a non-profit organization called L'Etoile de Pacho to help parents of disabled children.
“It doesn't make sense that parents are left alone,” said Richard, whose own eight-year-old son has cerebral palsy and epileptic seizures.
“The parents are at the centre of the kid's life. If they parent falls, who is going to make sure that the kid goes to his appointment? Who is going to support all of that?
More than 100 families have reached out to Richard so far. She does her best to answer any questions or requests they have for help.
Even the smallest detail can make a huge difference in a parent's life, she said.
“We were at a support group and that mother has a nine-year-old boy who was still in diapers and she had no idea were reimbursed by the government since the age of three. How come nobody at CLSC, nobody at the readaptation centre, nobody at the school, no friend told her that the diapers would be reimbursed?” said Richard, who also holds support groups three times per month, giving parents a chance to share experiences and cope.
“It means I am not alone,” said Jade Castonguay-Harding. “It means there are other parents that are facing differences.”
Despite being a special needs educator, Castonguay-Harding said she didn't know how to handle her own son's diagnosis.
“It was like the earth was coming down, like I couldn't believe it, like I was in a nightmare,” she said, adding that being part of the group has certainly helped.
“It's really a light in all the suffering in learning that your life has changed forever,” added Nadeau.
Richard said her hope now is that L'Etoile de Pacho gets officially recognized as a foundation so she may receive subsidies and extra assistance to ensure no parent ever feels alone.
“I don't know where I would be without (my son) today but he made me grow so much and I wanted a little part of him in the project, because I know one he day he won't be there but this will continue because of him,” she said.