Inspiration comes in many forms. It comes from Max’s smile when he tells me he fell in love with reading, it comes from questions people ask me about congenital bilateral perisylvian syndrome and it comes from things that I read online from parent bloggers and other readings about kids with disabilities.
I wouldn’t say that I’m the type of parent that’s on board with fighting disability rights (maybe I should be), but I do try to keep up on the things that parents post about disabilities. To me, their story is more genuine than some government or activist site on disabled rights. I should be more involved, I know, but for us (my husband and I), we try to avoid the disability term. Don’t get me wrong, Max knows that he’s different and we talk about it ALL the time, but we try to encourage him to think in terms that everyone is different. Everyone has something that they’re insecure about and he has to make the best of his disability – just because he can’t talk like others do, it doesn’t mean that all hope is lost… it’s time to grab life by the horns and show it who you are. I know, I’m an optimistic person and like to write about the inspiration that my husband and I instill in our children, but the truth is that I put on a good show. I cry at night, heck, I cry a lot about the disadvantages that Max has. I blame myself and curse the world, but I also know that this isn’t what will show Max how to be a man… how to be (ugh) normal. I have to be strong for him, because he is always far stronger than I am when it comes to his disability.
I’m trailing off…
My inspiration for this post came from a post over at About.com entitled, “What Parents Would Like Special Educators to Know.” This is a great post that speaks to special educators and teachers in general. It is what I’ve wanted to say to Max’s teachers since he started school, but have always been too shy. I know, I hide behind my words. I can write… I can’t give speeches. And yes, before you start, I stand up for my kid and I talk to his teachers – I just wish I had more of a voice.
I don’t want to be the bully parent, the demanding parent. I want Max’s teachers to feel appreciated, but understand that he is unique (hell, every child is unique, right?). When you send me home an “etiquette lesson” that I have to sign-off on saying that he can eat without making a mess (there’s a lot more to it, I’m summarizing) – well, he can’t. Do you think we haven’t tried to teach him manners and how to not dribble food down his chin as he eats? How to keep his mouth and chin clean while he eats and drinks? Of course we have; in fact, it’s a daily thing we go through, but he can’t do it. He can’t do it because he has no sensation in his chin. It’s not that he’s sloppy – he just can’t feel it. I’ve done the mirror thing – where he sits in front of a mirror and watches himself eat so he can remember to wipe, but that sucks. No, really… it sucks. Who wants to watch themselves eat every time they consume something? He gets it, he sees that he’s making a mess, but guess what… he ignores the mirror after a while. All I’m saying is pay attention to what you send home to me. If you have a question about something, call me or email me. I’m more than willing to talk to you. Don’t send a recorder home with a kid that can’t even blow bubbles through a straw… we won’t make any progress and it does nothing but aggravate both of us. Reach out to me ahead of time so that we can discuss what he can do in music class besides play the recorder. It irks me if I have to contact you and say, “Um, yeah, well we are not going to be paying for an instrument that he can’t even play. What’s the game plan here?”
This is my biggest take away from this post: I respect you as his teacher, I respect you as his care provider, but you are only temporary. I am here for the rest of his life. I will be the one that is with him throughout school, throughout graduations, throughout everything that he’ll deal with for the rest of his life. I am the one that will be there for him when he goes through tough times, and I am the one that will be there for him when he goes through good times.
I am his mother. Maybe you should listen to what I have to say.