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About Survivor Mom

I am the surviving, 75 year-old mother of Peter Weisman who died of Duchenne muscular dystrophy in 1980. I wrote a book called Intensive Care: A Family Love Story about the experience. The book is about how a family struggles and often thrives, even under the constant threat of death. This blog is my cyber-sequel. From a survivor's vantage point, I'm going to blog, in honest detail, about how life was then, and how it is now. Expect to feel better.

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YOUR BLOGS ABOUT SOCIAL ISOLATION yield a harvest of good ideas.

Mar 21, 2013

In my last blog, I asked parents of sons with DMD to suggest ways in which they helped their children to participate in more activities where they could interact with physically “normal” children. The result, with the help of visitors to this website, my friend David Stalling, and my buddies at Parent Project Muscular Dystrophy, is a real treasure trove of great ideas.

My first response came from Susan Parzymieso who, I suspect, speaks for many of you. She wrote, “I have no ideas to share, but I want to thank you for your question. My son is 4 and has DMD. Fortunately for him, he also has a twin sister. . .  but I’m very interested in hearing what your other readers come up with as my son gets older.” So does Johanna Wright. Her son’s “best friend” is his iPod. “I’m certainly looking forward to learning from others’ suggestions.

  1. Laura Kew, whose son has DMD came up with a winner – the Boy Scouts. Her son joined the Cub Scouts when he was in 1st grade. Now, at age 12 he is an active Boy Scout. “My son sleeps in a tent with the other boys. They’ve all learned how to lift him and get him into his chair. On camping trips there is a “duty roster” for items such as fire building, cooking, dishes, etc. We’ve added another line item –Matthew’s buddy.” A different boy is assigned for each meal to help him with his tray, etc. Either my husband or I are on each camping trip (for dressing and toileting duties) but we try to step back and let the boys do as much as they are comfortable doing to help Matthew. I should also mention that Matthew has become good friends with some of the boys. Most of his social time outside of scouts is spent with boys we met in scouts. They come over often and play video games or put together Legos with Matthew.”
  2. Let’s hear it for Legos, a game that several parents mentioned because they can be played alone or with friends. Michelle Perry’s son, Christopher and Nicole France’s son Riley aren’t the “sporty” type, but they socialize by playing legos and logging on to their iPads and iPods.
  3. Almost everybody who responded mentioned the importance of technology in their children’s lives. The computer, video games and Pods and Pads --have broken many of the barriers of social isolation.
  4. Patti Frank’s wheelchair bound son, Kevin, loves to go bowling with his “normal” friends at the Emerson New Jersey Boys and Girls Club. How does he do it? His friends help him put the ball on a special rack. Kevin directs them how to angle the rack. Last week he bowled 110 while his parents socialized with the other parents.

    (DMD Parents can suffer from social isolated too.)

  5. Lori Safford’s two sons, Ben, almost17, and Sam,15, are “anything BUT isolated,” Lori writes. Sam has been playing the drums for four years. (Here’s at least one instance in which gravity is DMD’s friend.) The boys participate in adaptive skiing, adaptive water skiing, power soccer with “normal” kids and other children with disabilities. Her older boy, Ben, sings in a Christian Youth Choir. “I really think it’s important that our boys learn to GIVE BACK and SERVE OTHERS,” Lori writes, which is why her boys tutor kids who need academic help, and serve as ushers at their church. Ginny W, too, writes that her son volunteers to make sandwiches for the homeless ministry at church.
  6. Ginny W’s email contained a dazzling list of activities outside of their church participation –swimming at pools with lifts, making zombie videos, going on picnics, taking art, pottery and cooking classes, and participating in the Special Olympics.
  7. Brian Denger suggests that the YMCA offers great summer programs such as swimming, crafts and outdoor activities that are adapted for children of many levels of ability. He also takes his son Matthew and friends camping where they roast marshmallows and go exploring on dirt roads in their power chairs. Brian also offers a list of camps: http://nichcy.org/publications/camps and wants you to know that the National Parks offer free lifetime entry passes for people with disabilities. To learn more,visit www.store.usgs.gov/pass/access.html.
  8. Advocate at your child’s school to make sure they include him in extra curricular activities, for instance, drama. It takes some moxie, but one mother I met at a Parent Project Muscular Dystrophy conference fought the good fight, and the school administration came to understand that the role of Hansel can be played on wheels, with Gretel walking alongside.

And while we’re talking, know that I’d welcome hearing from you about any other issues you’d like me to blog about.