There are times in raising all children, with and without disabilities that bring you to tears; tears of joy, tears of sadness, and sometimes you have no idea why you have tears. Having 2 typically developing girls, I can tell you these random tears happen more often with a child who has a disability. It’s different for every parent, I am sure, but from talking to friends and personal experience, I know there is a grieving process that you go through with your initial diagnosis. It’s a different type of grieving than with the loss of a child, but your hopes and dreams for your future and your child’s future suddenly need to be reevaluated.
This grieving isn’t a once and done process. It happens slowly and gradually over the course of your lifetime. I don’t experience this very often, and I think it’s because I feel like I only know Trenton with Down Syndrome and if he didn’t have it, he wouldn’t be Trenton. More often, my “grieving” comes with poor behavior, and often in public, or when he is left out of an activity due to his disability. I’m sad for him when he is left out, and I’m embarrassed with the poor behavior in public. I have literally considered sitting down on the floor of the grocery store sobbing because I thought MAYBE he would feel sorry for me and stop running away from me. Then, I’m saddened because I feel like people are looking at me with judgment that I can’t handle my own child and then with pity, and that just pisses me off. He IS an amazingly cool kid, who just happens to be a really fast runner because he just so happens to PRACTICE running every place we go. I don’t need pity for that; someone to stand in front of him and turn him around, maybe, but not pity.
Probably the worst part is when he is left out of activities because of his disability. I can’t imagine how parents dealt with this before inclusion was commonplace. It’s true, he has a harder time understanding game rules, a harder time maintaining his attention to the task at hand, and is sometimes significantly noncompliant. When he is left out because he is noncompliant, it hurts. I just want him to understand that he WAS being included, that people wanted to HELP him, and he is not cooperating…. WHY would you not cooperate, Trenton?!?
This past year, we became involved in Special Olympics. We live in a very rural area so our opportunities are pretty limited for him to participate with same age peers. We have been doing swimming and track and field with a little girl with Down syndrome who is about 6 months younger than he. They do very well playing together. He plays basketball with his classmates in a rural community league. The surrounding communities have been excellent with including him and allowing him to participate with his classmates. However, we don’t seem to have very many opportunities for football.
This last Saturday, we attended a football clinic at the University of Kansas. It was “Hannah and Jayhawk Friends,” a clinic put together by their head football coach, Charlie Weiss. This was the 2nd year this clinic was in Kansas. I’m not really sure what I was expecting when I went down, but this far exceeded my expectations. The players and coaches were amazing. I think I expected the players to be slightly aloof, like this was a requirement from their coach that they had to fulfill to play football. I was so wrong. In watching them interact with the Special Olympics athletes, I saw so much heart and genuine joy in helping others.
Trenton continued his behavior of running, I think mostly because he wasn’t sure what to expect, and because Coach Weiss had a pretty amazing golf cart that he wanted to ride around in. However, instead of staring at me with pity or judgment, they jumped right in to help. Darian Miller, #6, even took a turn running after him for me, never showing a hint of frustration that Trenton was not being cooperative. Taylor Cox, #36 cheered him on enthusiastically, always with a smile on his face. Ed Fink and Preston Randall also helped encourage Trenton to participate.
I spoke to Coach Weiss about this, and told him how fantastic it was, as far as the training the players must have had on how to work with the participants and how they seemed to really enjoy putting on the clinic. He said the players got a lot of good out of running the clinic as well.
At one point I just stood back and watched Trenton with Darian and began to tear up. I don’t know how the two of them felt about it, but to me, it looked like they were creating a real friendship. My heart just filled with pride that I am so blessed to be Trenton’s Mom, and with gratitude that Coach Weiss started this program. Programs like this have contributed so much more than just 2 hours of football skills practice. The interaction between the players and the participants teaches both sides life- long skills of acceptance and caring.
The more acceptance of people who are differently abled, the less parents are going to have this grieving process I talked about earlier. It takes time for this to happen. It’s been an inter-generational process to get this far in our inclusion in schools, and it will be years and years before all people are accepted for who they are, no matter what their abilities. Programs and events like this will keep the inclusion trend on a more positive note.
A huge Thank you goes out to Coach Weiss and all of the other coaches, players and helpers last Saturday at KU. You guys are all amazing and I am so grateful that you took the time out of your busy schedules to provide this opportunity to my son.