In the past I have talked about working with kids at Space Camp in Huntsville AL with kids that were deaf and or blind. Out of all the groups and kids that came through in a year both W and I fell in love with these kids more than most. Sure they had challenges, but many of them had developed a sense of humor and wit about them that knew no bounds. As a counselor leading these kids through activities things were more hectic than normal and quite challenging at times.
Then there were the moments that made it all worth it. W has many stories of taking kids down in the Underwater Astronaut Trainer (UAT) in full scuba gear and watching them just light up. I personally saw kids that were deaf and or blind conquer simulators that made most kids apprehensive a the thought or site of them.
So how does any of this relate to having a son with autism and hydrocephalus? These kids were fighters and their ambition knew no bounds. These kids faced challenges early on like Alvin has. These kids all grew up knowing they were different to a degree and let nothing stop them.
In a way I feel like our interaction prepared us in a very small way for what was to come. Both W and I have had many a sobering moment over the past few months. After saying the words “incurable neurologic condition” so many times to different people and explaining that the future is anything but certain for him the weight of the situation just hits. The stares that we continue to get and his gradual realization of what is going on can be a lot to take. Some days with all of this going on the only thing we can do is remember how far he has come.
A couple of weeks ago Alvin started back in gymnastics. I had no clue what was going to happen but after seeing his favorite teacher and getting to fully participate in a class he was beaming from ear to ear. That night he had accurately and appropriately answered questions in class. At the beginning he was asked if he could have one super power what would it be and he said “flying really fast”. During stations he scared us all when he ran up to the bar and threw himself up and stayed there locking his arms out and just grinning. We were all in shock when it happened because no one really knew what to expect. Since then he has even begun to give verbal acknowledgement to the teachers when he finishes a skill by giving a high 5 and saying “yes! I did it!”
I apologize in advance for the video quality. I was taking this outside the glass with a glare from the sun coming in.
I guess what I am getting at here is to remind not only myself, but also any others that may work with kids with any kind of special needs not to focus so much on what they can’t do but remember what they can do. If Alvin and the kids I worked with at Space Camp taught me one thing is that they do anything if given a shot. The medical professionals we work with are trained to give us the cautiously optimistic answer to everything. Its up to us to help these kids defy what they tell us in anyway possible.
Is it tough, in a word YES. Its very hard to work to find programs where the child might fit and work with staff enough to help them understand what is going on. I can’t even tell you how mnay times its just killed me seeing Alvin try and talk or play with another kid just to get rejected due to his lack of communication and social skills. The thing we have to remember though is all the stuff that we fight for now will benefit them in the end. The more we fight for acceptance and fight for them to have “normal” lives the better chance that they will grow up confident in what they can do instead of focusing on what they can't do.