Please welcome Jill Storey to the blog! She's an amazing mama of five boys and is here today to share her experience as a special needs family. Enjoy!
Like most things, summer fun can be complicated with a child with special needs. My son, John Paul, was born with limb differences and a blood disorder called thrombocytopenia, which means his blood doesn’t clot as well as normal. His knees are both fixed so he doesn’t run and stand like a typical boy his age; he moves around in his own way by hopping, and for long distances he has a power chair to help him get around.
He loves the same activities that most kids do during the summer: playing outside, swimming, and going to the park or to the beach. As he grows and wants more independence, we have had to get creative and find ways to adapt his play so that he can be as active as he wants to be.
Sometimes this means something as simple as assisting him with whatever he wants to do. For example, he doesn’t swim on his own, yet, so he needs someone to hold him in the water or sit in a baby float. He loves going down the slide at the playground, but needs help up the ladder.
John Paul has four older brothers, and one of the joys of these past few years of being a special needs family has been to see how lovingly they want to help him while they play together. They read him books, color with him, and let him “run” the bases for them when they play baseball in the yard. They draw train tracks with chalk on the driveway and they all pretend to be trains with their scooters.
Until last summer we were largely able to use a stroller for John Paul when we were out and about. But as he grows, he wants to use his power chair more often. This has made us look for wheelchair accessible options that we weren't aware of before. We discovered an ADA inclusive playground very close to our house. We also found an accessible trail in Shenandoah National Park so we could go hiking as a family with his chair. We have also visited the National Gallery and Museum of Natural History with his power chair. Maneuvering through the crowded museums and finding elevators was an eye-opening experience.
As a mom, I have also had to make adaptions. My first instinct is to worry about all the things that he will not be able to do, and to protect him from doing something that will injure him. I also tend to want to over-assist him at times. The summertime is a great way to push me a little outside of my comfort zone, and John Paul is constantly surprising me with what he can do. He knows his body so well now - better than anyone else- and he can do some amazing things. Sometimes all it takes is giving him the right tool or the right amount of encouragement, and stepping back and letting him go.
This is a journey that we are all traveling together, learning the rules day by day. Sometimes adaptions we have tried haven’t worked out; oftentimes John Paul would rather make his own. It has been frustrating at times, but it has also been humbling and inspiring. More often John Paul is the one teaching us, not the other way around. No matter where we travel or what the weather, each summer with John Paul has been one filled with joy.