Throughout Peter’s childhood, especially when Duchenne began to slow him down, I wracked my brains trying to help him find friends and activities. School was not the problem. Pete was an articulate, likeable, funny kid, and since most of any school experience is about sitting at a desk or at a cafeteria table, Pete had school friends.
What he didn’t have were “outside friends.” Family was no help. While he had two grandparents living within 10 minutes of our home, neither chose to participate in his life. His older brother, Adam made up some of the difference, as did our adult friends. There was also no organization like Parent Project Muscular Dystrophy (PPMD) to which we could turn for advice.
By the time he was 7 years old, Pete was confined to a wheelchair. Even sensitive, physically active children could do no better than offer him the chance to keep score while they played ball. There were no extra curricular activities in the community in which Peter could participate. As a result, an often solitary Pete looked inward. There he found talents and interests – a passion for reading, drawing, music and drumming—that made his life meaningful. Peter was in indoor child.
Now contrast Pete’s childhood in the 1960’s and 70’s to that of Cory Stalling of Missoula, Montana who, in 2013, at the age of 12, is still ambulatory, thanks to medication with an assist, no doubt, from sheer grit. This past summer he walked two miles a day on a four-day back-packing trip with his Dad.
Thanks to the internet, Cory stays connected to information, games and people through technologies that didn’t exist when Pete was alive. So far, at least, Duchenne has not kept Cory from doing what “normal” kids do, although he has begun to move between two worlds: Cory acts in the local children’s theater, and participates in a therapeutic riding program. His has an assist dog that’s with him day and night to keep him company. His Mom, Chris, and his aunt and uncle, who live in the same town, devote themselves to filling his life with new adventures. Cory is an outdoor kid.
What about your child? I’m hoping that this blog will elicit a response from you that might make other children’s lives happier. Does your child suffer from social isolation? How do you help your child cope? How does your child’s school and community act to create a more inclusive environment? What does your child enjoy doing when he is alone? What ideas can you share with other parents that may enrich their child’s life? Please send me your ideas. My next blog will include your responses. Thanks.
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