As the mom of a special needs kid I’ve gotten used to all of the ways my son is different from his “typical” peers. I’ve also started to get a little more used to the sting that comes with each realization. However, a year ago I was hit square in the gut with the painful reminder of his limitations. It was the end of his kindergarten year and the general education class he spent a part of each day with put on a year-end program. There were 2 general education kindergarten classes as well as his special ed class totaling roughly 50 kids. Oh, and my son’s 1:1 aide who sat with the children to keep my son seated in his spot, focused on the program and to stop him from taking off his shoes (a cyclical behavior we deal with even now.) So yeah, walking into the gymnasium and seeing my son (the only child sitting with an adult’s assistance) kinda sucked.
The kids proceeded to sing a handful of songs they’d learned and speak little one-sentence parts, each taking their turn @ the mic. Well…my kid has no lines. Why? Because he’s pre-verbal. His speech paths in his brain were short circuited by a vaccine injury he suffered at 18 months. He works very hard every single day to speak. I'm going off topic, sorry. Anyway, I stood amongst the other parents (typical and special parents) with a grimace on my face that I was hoping would pass for a smile for about 30-45 min’s while this torturous reminder of my son’s disability dragged on and on. He was a trooper as he always is and did his very best. It’s all we ever expect of him. HIS very best. The program ended and everyone was clapping when my son’s aide stood up (oh crap, now he has to be paraded out before anyone else?) and walked with him to the mic in the front of the stage and he held up a sign that read “Thank you for coming to our show.”
The applause was thunderous. As I find myself always doing, I celebrated and cursed the moment all at the same time. I was thrilled they included him in the program (as they should have, by law) but I was heartbroken for him because he wasn’t participating the same way his classmates were. I try to put myself in his head and imagine how he must be feeling. Is he wondering why he isn’t singing and reciting lines? Is he wondering why he has to have the aide sitting behind him when no one else does? How does that make him feel? How can I help him? Well isn't that the $10 million question? How can I help him? Ugh. About a month before this program, his special ed teacher sent home a cd of the songs they sang. In an effort to familiarize my son with the music to avoid any anxiety, we played the cd over and over at home. He loved the songs. They were about "The Golden Rule" and taught us to "Mind Your Manners" and on and on. So we listened to that cd for exactly 1 year and 1 month. We danced to it. I sang those songs over and over to him. Sometimes he'd mouth a word back to me if I was lucky, but he loves loves loves the cd. Loves it.
Last night.
Listening to the cd (as usual after dinner.)
I'm in the living room relaxing w/husband; he's in the kitchen (where the cd player is)
The first song starts and what do I hear along with the children on the cd? MY KID! MY KID IS SINGING ALONG TO THE SONG! MY KID IS SINGING TO ME TO MIND MY MANNERS AND WATCH MY ATTITUDE! He sang the entire song. He sang the entire next song. He sang the entire following song. Of course husband and I are holding our breaths; trying to not make a big deal at all about it for fear of him stopping. But we both were beyond thrilled. Beyond proud. Beyond thankful. Beyond hopeful. It's as if my son knew I needed him to sing to me. It's hard as hell to live our lives. I don't want to hear about how hard other people have it. I know there's a universe full of people who have it way way worse than we do. I get it. But this is MY BLOG. MY MOMENT. MY LIFE. And it's hard as hell. So when I heard that apraxic little voice giving life to lyrics that have been spinning around in his head for a year? I was thankful for my hard as hell life. Without it? I'd be typical. Ew.
