Amy Thomason is the mother of first-grader Sean, 7. He has a younger sister, Kelly, 4, and two younger brothers: Brady, 3, and Zachary, 5 months.
Sean is very active. He wears AFOs, walks with an RGO, and uses a manual wheelchair to go from a car to inside buildings. He uses a sports “basketball” wheelchair for basketball and tennis. “He also has a variety of other equipment, such as a Standing Dani® mobile stander and a sled for sled hockey,” Thomason says. He enjoys basketball, swimming, sled hockey, and a variety of other sports, she adds.
Sean is outgoing, persistent in going after what he wants, and shows leadership qualities, says his mother. In fact, once his kindergarten teacher told Thomason that some of the other parents were complaining that their kids were coming home with holes in their jeans. Sean had convinced the other kids to play games on the ground! What they didn’t understand, Thomason explains, is that they could play games on the ground without crawling like Sean did.
If Sean complains about his disability, Thomason is quick to point out the positive side. “Hey, you get things other kids don’t—for instance, you get a parking spot right up at the entrance of whatever store or event you are going to, you get preferred seating places, and you can get away with murder when other kids can’t—people see you in a wheelchair and let you get away with stuff that they wouldn’t allow other kids to do.”
She reminds him that he often gets free ticket to NHL hockey games and has met various players multiple times and has gotten tickets to other events, such as the circus.
Support Group Benefits
Thomason especially appreciates the strong local support group she belongs to. “We go to the same doctors and therapy centers; we go to the same stores for medical and sports equipment; we deal with the same school system. We really know one another’s children and our various family situations. So, in so many ways, we can really help one another.”
The support group also provides opportunities for parents, siblings, and children to enjoy get-togethers and other social activities with people dealing with the same things they are and who really understand life with SB.
However, she notes that the online group covers a much wider area, and so it often can provide information on new treatments and solutions to unusual problems that the local group might not be able to.
Helping SB Kids Attain Goals
Thomason’s advice to other parents is to accept their child’s disability: “Every child is going to have something that isn’t perfect.”
She continues, “Don’t spoil them. Assign chores and responsibilities according to their ability.”
Thomason stands on the soapbox about role models and goals for children with SB. Often the role models and goals held out do not help children see the real opportunities and possibilities. “Not that I’m putting down anyone who works for minimum wage,” Thomason says, “but all too often children are given the idea that ‘if you work really hard and really try, someday you too can have a minimum wage, dead-end job like this person.'” She stresses that these youngsters need to know that they can often reach for far more, and see role models who have achieved high-level career success or satisfying fulfillment of talents and abilities.