Disability

This movie was shot at the park near my parents' house. You can hear them in the background cheering Erik on with grandparent gusto. I couldn't believe this was my son when I saw this the first time. Erik still struggles greatly with ascending and descending steps and will just crawl on them to get from point A to point B when there is no hand to hold onto for support. My heart breaks every time his therapist works with him on our stairs. It's just normally very hard for me to watch. Imagine my surprise when I saw this! Go, Erik Quinn!

From watching this movie, you might be able to tell that Erik has a hard time determining where the edges of things are. The little spasmodic step up he does into thin air at the top of the slide illustrates my point. He does this a lot. For this reason, he is generally not completely comfortable being atop a platform like this. He knows the edge is there, but the information his brain receives from his eyes seems to be confusing. He will stop miles short of any unfamiliar edge and slide along on his bottom instead. This kind of thing is something I described earlier as one of his newly-emerging skills to compensate for the weaknesses that go along with Williams syndrome. His brain does not process things the way we do, so he simply learns another approach in order to accomplish what he desires to do. It works!

I readily classify Erik as disabled for medical purposes and to qualify for the services we receive. I do not have a problem with that word. However, I believe the following story speaks volumes about what I see when I look at Erik. A couple weeks ago I parked a healthy distance down the street from Erik's school and was walking him down the sidewalk when a therapist spotted us and said, "We leave parking spaces open for you guys in front so you don't have to park so far away!" Without thinking, I blurted out, "Erik's not handicapped! We like to walk!" I laughed long and hard about this later. There I was walking down the street with Erik, a little boy going to special ed class who has no clue where the edge of the curb is and staggers along in plastic leg braces while muttering on and on about wheels and threatening to take a digger every fifth step. What a sight we must have been! To me, we were having a perfectly normal, happy morning. Any handicap he demonstrated at the time was completely invisible to me. Every week I arrive plenty early so that Erik and I have that walk together and he can drink in all of the sights of the vehicles and life around us. Once he is concentrating on heavy equipment operating nearby or watching birds streak across the sky, he lurches along at the speed of molasses in January and sometimes repeatedly crashes to the ground. However, I compensate for this as well by arriving early so we can enjoy the journey. We get there -- and on time! As my pain recedes, the way I visualize Erik and how we fit into the world is definitely shifting into something more positive.

Yes, my son has a truly devastating disability, but I use that particular word to our advantage when it's appropriate and pretty much put it away when we are living our lives. I'm thankful we have a genetic test result to tell our story to insurance companies and medical facilities so that there is little need to explain anything. I'm fully aware of what he has trouble doing, and I now watch him learn to use what he can do to accomplish what he needs to in his own time. If there's one thing Erik has taught me, it's that good things come to those who wait! Erik is much more than a test result or a handicap to me. He's my ERIK through and through, and most of the time that is all I see!