A week ago a blog of mine was picked up by the Huffington Post. It was about the lack of friends in my son Ben's life -- and research showing that isolation is a significant problem for our children, particularly in the teen years, when their social world shrinks instead of expanding.
It's not a topic that anyone likes to talk about. Who wants to admit that their child has no friends?
It really hit me a couple of years ago when I was programming a voice device for Ben and couldn't think of a single authentic friend to include on the friends' page. And this for a boy who has always expressed his desire for friends, and was capable of having some as a younger child.
Over 750 people commented on the post, which tells me that friendship is something we value, that many people struggle with it -- disability or not -- and that this is a big issue.
There were many suggestions: build your child's interests because friendship is based on common interest; join with other parents of kids with disabilities to promote friendships or reach out to programs for kids with disabilities – especially overnight camps – where your child may be better understood; get a service dog; seek out people with alternative lifestyles; use the internet to break barriers, either by setting up a blog or Facebook page.
A number of people were adamant that typical children can never have authentic relationships with our kids, and that they shouldn't be 'forced' to. Even some seasoned parents of kids with disabilities agree: “No matter how kind the typical child or family, the only reliable peers are from the world of disabilities too.” I’m not quite sure what to make of this. It doesn’t sit right with me, but I'm well aware of how complex the issue is.
That's why this piece today by a blogger with spina bifida in the Huff Po bothered me. She argues that if only parents would toughen up and send their kids into the real world, all would be well. "In an effort to protect their children, some parents will only seek out other disabled children for potential friendships," she writes.
I find her tone self-congratulatory ("My family always taught me how to do for myself") and blaming of kids who are more complex and need more support. "I had to make friends with the 'normal' kids because they were the only kids around," she writes.
The comments on my Huff Po piece tell me that many youth -- with and without disabilities -- are unable to 'make friends with the normal kids' despite best efforts. Struggling to find good friends seems to cross every line, and certainly the disability one.
I heard from some organizations that are promoting inclusion or access for people with disabilities. Game Accessibility from the Able Gamers Foundation advocates for accessibility in video games and has great resources. Unified Theatre brings together kids with and without disabilities to develop and perform plays. The concept is simple, reads its website: let teens lead, let creativity rule and treat people with disabilities as complete and entire equals. Together Including Every Student is a peer-matching program that brings students with developmental disabilities together with student volunteers to participate in community activities. Side by Side is a parent’s blog post about a boy’s successful inclusion in a regular school program.
There were parents of kids -- with and without disabilities -- high school and college students, disabled adults and a businessman who contacted me, wanting to know how they could make a difference. A counselor who also has hearing loss wants to adapt fairy tales to include our children – her first is about a princess who is deaf/hard of hearing. Given Ben’s tiny size, she thought he might be a candidate for inclusion in Jack and the Beanstalk! A breeder offered to donate a pup as a service dog.
The response to my Huff Po piece makes me hopeful.
Ben and I set up a Facebook page.
What are your thoughts?
Louise Kinross edits BLOOM, a magazine on parenting kids with disabilities by Holland Bloorview Kids Rehabilitation Hospital, Canada's largest children's rehab hospital.