BEHOLD: Joel in all his glory posing in front of the Waterwall in Houston in the spring of 2015. I like this picture of Joel because he’s doing one of his favorite things, posing. I do not know what kind of pose he thinks he’s doing but he thought it was hilarious.
Growing up, we did not interact or spend a lot of time with other people with disabilities. (In fact, I didn’t even know Joel had a disability until I was like 8ish… I’ll explain that in another post) This was not because we tried not too, but because my family doesn’t tend to go out look for the opportunity to do so. Part of it could be cultural and the language barrier, but I as I got older I wanted to change that. Up until about 4 years ago (Joel’s first time going to Lions Camp) his only interaction with other people with disabilities was through school and the occasional bump in at the mall or something.
When I started working at my current job, Families Helping Families ( which is our state’s PTI) I learned about so many more opportunity for Joel and I tried to get him involved in as many things as possible. Like Miracle League, Special Olympics, Crossfit, other camps, dances, and all kinds of other random activities and events. So he now does sports basically year round and he loves it. But there are few things that I noticed: parent cliques and the difference between Joel and the rest of kids. (Kids?? other people with disabilities? participants? you know what I mean.)
So without further ado… Comparing:
I was sort of ignorant when it came to down syndrome, I knew the basics, the things they teach you in school about it, and would see an occasion random story on my Facebook feed about someone with down syndrome. But overall my view of down syndrome was limited to what my experiences with Joel were.
With that said, let me tell you about Joel and how I compare him to the others:
He is kind of mean to us most of the time when he’s playing sports, like he gets mad when he watch him too much, doesn’t respond well to our cheers, kisses, thumbs up, and waves, and doesn’t want to be near us unless it is time to go. And I would compare this the way most of the other kids interacted with their families. A lot of them were loving and blew kisses and loved the praise and attention from their families. Basically the opposite of Joel. Now, it’s not as bad as it sounds. He glances over to us during the game to make sure we’re watching. He’ll tell us he had fun, smile, and sometimes even hold our hand when the game is over. But it is still different from the way most of the other kids show there affection and I got jealous at first. I have come to the conclusion that this may be all the affection we will get from him, at least during sports, and that’s okay. And to be fair, he doesn’t always get mad at us and at home he is much more affectionate.
Joel is also mostly nonverbal. He tries his best to communicate and but he can only say a handful of words. Somethings you can only understand if you spend enough time with him. And once a gain I would compare this to the other kids, specifically the other kids with down syndrome. They all talk. Some talk way more than others but I haven’t met a single one who has speech as bad as Joel. This made me very jealous, and I know I shouldn’t be. Everyone learns and grows at their own pace regardless of whether or not they have a disability. I have seen his speech improve, in the past couple years but it is still pretty behind most of the other people with down syndrome that I have met. Even the younger ones. It used to bother me, and to be honest it still makes me jealous at times. But I am coming to terms with where Joel is. If I keep comparing Joel to others, I won’t be grateful for where he is. And I am grateful for where he is. I am so proud of him, he has come a long way and has more to learn. Even if he doesn’t improve his speech, it’ll be enough for me.
The Cliques: I’ll write about this later on.