Bloom magazine: Helping Kids With Disabilities Grow
peer support
The perfect match

‘A parent who’s lived and breathed it’

 

 

 

 

 

 

Hooking up

Ask your children’s rehabilitation centre if they have a matching program. Or contact the local or national association for your child’s specific condition, e.g. the cerebral palsy or brain injury associations.

Or try these organizations:

Canadian Organization for Rare Disorders

National Organization for Rare Disorders U.S.

The Alliance of Genetic Support Groups

Mums United for Moral Support

Our-kids.org
An e-mail list of parents, caregivers and others supporting kids with a variety of disabilities

The Family Village
A global community of disability-related resources, including parent-to-parent programs.

 

Girl and baby with prosthetic arms
Megan Strysio and Claire Johnson.
Photo by William Suarez.
Susan Marshall was pregnant with daughter Claire when she learned that Claire would be born missing her left hand.

“My first reaction was disbelief, and then it was this sense that this child isn’t even born yet and already has a big deficit, a loss that would have a big impact on a day-to-day basis,” Susan says. “It was very emotional.”

Then something changed. Susan was connected to the mother of a 10-year-old boy with a similar limb difference. “She explained that children who have never had the use of that limb learn to do things a bit differently, it may take a bit longer, but they’ll be able to do everything — tie their shoes, swim, participate at school, play music. I found out her son went to the same camp as my other children. Without talking with this parent, my pregnancy would have been so hard. Now I felt hopeful and inspired. I hung up the phone and said: ‘We can do this.’ ”

When Claire was six months old, Susan made contact with another parent of a child with a similar condition — this time through the Matching Mothers program of the War Amps of Canada. Susan was matched with Gillian Sutherland, mom to Megan Strysio, who is 11.

“It was great to talk about the emotional side — how we found out, what our reactions were — and to ask all kinds of practical questions,” Susan says. “When did you get her fitted for a prosthetic? Why? What do you do about people staring and how do you respond? How did Megan learn how to answer questions?

“I found Gillian to be such a positive person and she said it was a matter of giving Megan the message that she could do everything she wanted to do, that everyone has differences, and that you can be okay with this.”

Claire will be getting her first myoelectric hand soon and Susan is eager to discuss the ins and outs with Gillian. “It’s one thing to talk to an expert, it’s another thing to talk to a parent who’s lived and breathed it.”end of article

Why does parent support work?

A 1999 Journal of Intervention study of parent-to-parent programs across five American states found that parents who were able to speak to another parent who had a child with the same disability: felt more accepting and positive about their situation; felt better able to cope; and made more progress in getting help with the problem that motivated them to call the program, when compared to a control group.

“Although professionals can and do offer many important services, their language, viewpoint, and day-to-day experience is simply very different from that of family members,” the authors say.