Parents shift focus from disability to possibility
I will copy and paste the article just in case the link gets removed eventually.
THE MOTHER OF ALL BABY COLUMNS
Douglas: Parents shift focus from disability to possibility
August 3, 2011
When Andrea McDowell was seven months pregnant, the baby she was carrying was diagnosed with dwarfism.
“Initially, I was more or less terrified because no one could explain to me what the diagnosis meant,” the Hamilton mother of one recalls. “And, at this stage, the only thing you know about your kid is what is potentially wrong with them. You don’t yet know who they are as a person.”
Sharon Aschaiek, a Toronto mother of one and disability advocate (autismresolutionontario.com) whose 5-year-old son Jaden was diagnosed with autism at the age of two-and-a-half, remembers the sense of urgency she felt at the time: how her worry about his future made it difficult for her to relax and enjoy her son.
“You can get too caught up in the future. I had to learn to relate to Jaden in the moment — to really be there in the moment, too. Instead of worrying about the future, I had to realize that I was shaping that future right now.”
Once she made that shift in perspective, she experienced less anxiety and more joy. “What you see is what you get with Jaden. His love is unfiltered. I feel lucky to be raising him. He is a really special child.”
Aschaiek was wise to let go of the need to control a situation that is often out of the parent’s control, says Amy Baskin, mother of two, a volunteer and advocate in the special-needs world, and co-author of More Than A Mom: Living a Full and Balanced Life When Your Child Has Special Needs (amybaskin.com).
Advocate, yes, she advises, but don’t let your child’s disability become the focus of your relationship. “Hang out and do the fun kid stuff. Tune into your child and recognize your child’s unique personality, strengths and talents. Create a village around your child. And connect with other parents who are in the same boat.” According to Baskin, you shouldn’t have much difficulty finding other families in a similar situation: One in five families has a child who has special needs.
Tapping into support from others who truly understand can change everything. Peterborough mother of two Linda Viscardis remembers hearing Northwestern University communications professor John McKnight speak 22 years ago about the value that people with disabilities bring to the world. “That speech changed my life,” she recalls.
At the time, Viscardis was hungry for inspiration. Her eldest child, Laura, then 5, had been diagnosed with a chromosomal abnormality during her first year of life — and had almost died on a couple of occasions. The combined pressures of taking Laura to speech, physio and occupational therapy and caring for a new baby had taken a toll on her. She had experienced a major depression the previous year.
What McKnight said changed everything for Linda and for Laura.
“He talked about the importance of creating strong, healthy communities — how every single person in the community has strengths and gifts and the capacity to contribute. We changed the expectations we placed on Laura and that in turn changed the expectations she placed on herself. Today, at age 27, she lives in her own apartment, works part-time and volunteers at a seniors’ residence. She’s more computer literate than I am and she has a large circle of friends. She has surpassed every single expectation we have ever had for her.”
Toronto mother Megan Daley feels that making disabilities more visible is a crucial first step to changing attitudes and expectations. (Her son Gavin’s left arm didn’t fully develop in utero, so his arm ends at the elbow.) To encourage people to focus on what Gavin, now 3, can do rather than what he can’t, Daley is participating in filmpossible (a contest organized by Holland Bloorview Kids Rehabilitation Hospital in Toronto in an effort to “bring visibility to disability”) for the second year in a row. (Note: For information about this year’s filmpossible contest, which now features photography, please visit www.filmpossible.ca.)
Last year’s video — titled His Abilities — focused on a day in the life of Gavin, who was then 2. “We like to show people what he is capable of,” explains Daley. This year’s entry — titled I Can Be Me — features Gavin and his friend Gabby, who has the same type of amputation as Gavin. (The aim of this year’s entry, according to Daley, is to show other young children that kids with amputations are just kids.)
The first few years after a child’s disability is diagnosed are really difficult, say parents who have been there. As time goes on, you are able to focus less on the disability and more on the child.
As Andrea McDowell, whose daughter, Frances, is now 7-1/2 puts it: “Now she’s just Frances and she’s fabulous and we have a wonderful life together.”
Ann Douglas is the author of The Mother of All Pregnancy Books (Wiley Canada, 2nd Canadian Edition, June 2011) www.having-a-baby.com. You can find all of her columns on the Star’s parenting website, parentcentral.ca.