West Carrollton, March 29, 2008
 
The Autism Awareness car wasn't the fastest one at the Pinewood Derby, held by West Carrollton Cub Scout Pack 840 on Saturday, but, as they say, winning isn't everything. The car was created by Bob Bernotaitis, in honor of his son, Sam, who is a member of Den 5.
Sam, who was diagnosed at 3 with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) falls on the mild-moderate end of the autism spectrum. But that doesn't stop his fellow scouts from welcoming him to scout activities, encouraging him to participate, and ignoring him when he's having a meltdown.
Much of the credit for their acceptance goes to Den 5 Leader Norm Shockley, his wife Angie, and their son, Jake. Though they know Sam has some special challenges, Jake and his family have never treated Sam any differently than anyone else. It was Angie that reassured Sam's mom, Nancy, that he would be fine at scouts; and it was Pack Leader, Lisa Boyd, who allowed Nancy to show a video explaining autism from a child's point of view, then answer questions from the boys and their families at Sam's first Pack meeting.
The boys wanted to know everything from "Why does he scream?" to "Can I catch it?". The adults were more focused on what they could do to ease Sam's anxiety and how best to approach him. It was through this open exchange that the boys learned that Sam has more commonalities with them than differences, and how to help Sam when he's having difficulty. Since that first Pack meeting, Sam has come a long way. At first, he was nervous and timid, preferring to cling to Angie rather than sit with the boys. While he still has trouble transitioning into the building, once he's there, he's right in on the action.
Who could have guessed that he would have walked up on stage, alone, to accept a participation ribbon, play kickball with his friends, or run 1/4 mile? He has advanced through the ranks from Bear to Webelo, and in the process, learned to tie knots, hiked through the woods learning about trees, and made some friends.
While we parents are painfully aware that our children have a difficult time getting involved, blending in, and becoming part of a group; we may not know how best to help them. Nor does the typical population. While it's our instinct to protect them from uncomfortable situations, it may not be in their best interest. Parents need to seek out opportunities for these children to participate with their typical peers, and those within the community need to be open and accepting, giving parents the support they need to allow their children to succeed.
On Tuesday mornings, I lay out Sam's bright yellow scout shirt, a reminder that he has scouts that evening. As soon as he sees it, he begins the "Tuesday Dialogue" that goes something like this:
"Scouts!" "Sam!" "Jake...house!" "Shew-wee!" (Jake's mom jokes that Jake has stinky feet to get Sam out of a mood) "Bus!" "School!" "Scouts!" "Sam!", and so on, and so on. This dialogue resumes as soon as Sam steps off the bus. There's no telling how often he has repeated this throughout the day. It's obvious that he looks forward to scouts and it continues to be a great experience for him.
We, as parents, are so busy making sure they are getting a fair and appropriate education, all the therapy we can afford, the right nutritional supplements, and the latest biomedical treatments that are going to make the biggest difference in how they "turn out"; we often forget that sometimes they just need to be "one of the boys". For these kids, it's ALL about fitting in, making friends, and being accepted for who they are right now, not what they hope to be in the future. In Pack 840, Sam has hit the inclusion lottery. I guess winning IS everything. |
