I hope one day that Max can tell you his own story. I hope that he can tell you what these moments I explain are really like, because all I can do is tell you how it feels as a mother and what I think he feels. Of course I talk to him about the things I write, but with his limited communication, he doesn’t tell me much about life being hard or limited. I like to reference this situation to a guy I knew back in college that had webbed fingers. I asked him if he could swim faster; not to be rude, but I was just curious. He laughed and said, “You have no idea how many times I’ve been asked that, but how would I know if I can swim faster or slower if I’ve always had webbed fingers?” My reply was simple, “Oh, yeah, that makes sense.” And that goes hand-in-hand with this post, how would Max know what it’s like to socialize with a voice if he’s never had a voice?
Okay, I’ve seen the debates across the net. I’m not saying he DOESN’T have a voice; of course he does. He’s highly intelligent, is able to communicate his wants and needs, and has a personality that would make you melt in his hands, but I’m not talking about that. I’m talking about being able to speak and talk.
When it comes to hanging out with neighborhood kids, playing group sports and being part of a club, Max usually sits out. My husband and I try to encourage him to do different sorts of after school activities, but he doesn’t want to, because his idea of a fun night, is hanging with the adults. It aggravates me at times, because I want him to be a kid, “Max, don’t you want to go out and have fun at the park instead of sitting around the house?” His reply is usually “no.” Don’t get me wrong, he has friends, but he would just rather hang with the adults.
But I think I know why, I think it has to do with patience. As Max’s parents, we take the time to listen to him. We wait patiently (or at least try), to hear what he has to say, let him get his full sentence out and then respond. Children on the other hand typically talk over him or vocalize for him because they don’t have the patience to wait for him to say what it is he has to say.
I see it a lot actually. When Max is playing with other children, he typically doesn’t talk, or just says “yes” or “no.” It doesn’t seem to bother him really, but I think when it comes to actually talking, he also doesn’t have the patience to deal with them. It’s kind of funny really, because it goes full-circle – he doesn’t have time for them, and they don’t have time for him
This may come back to hurt us in the long run, but it works for now.