An Intricate Dance

Raising a child with autism is like trying to learn an intricate dance being choreographed by an extremely talented choreographer. You are always trying your best to learn the steps, and just when you think you are getting the hang of it, the choreographer makes a few tweaks to the routine. You have to pick up on the slight differences, the steps that have been removed, the steps that have been added. Unfortunately, the choreographer expects you to know these changes instinctively. And just like any great artist, they get frustrated by the delay in the process when you need time to learn.

An example of one of Darin's intricate dances is bedtime. He picks out his pajamas, but I have to make sure I call them "sleepings" because that's what he calls them. He gets his wipes and his clean pull-ups (no potty training yet, but that's for a different posting). He gets his laundry basket. He makes sure all of these things are on the bed before he gets undressed. He takes his shoes off, puts them together, and put them back in the closet. Once he is undressed, that's when it becomes a dance for me. Sometimes he let's me get him clean before his new underwear. Sometimes he needs to do it all by himself. Sometimes he'll let me help. Once he's all dressed, he gets into bed, I have to ask him what color his glowstick is and we tuck it behind his shoulder. We count his blankets as we put them on. We take inventory of all the things he "needs" to go to bed. I have to say the same words, give him a kiss, blow him a kiss, and say goodbye. If I miss any of this routine, it's like something snaps. He doesn't have a meltdown, but he gets upset. If I can figure out what is off for him and fix it, he snaps right back into the adorable little boy I know. If I don't figure out what is wrong, that's when the meltdown happens. That's when he loses the ability to really tell me what's wrong. That's when we have to resort to showing. He isn't calm enough to use his words, so we have to show.

That's when it gets hard for me. When my son is so frustrated that he loses grasp on his only basic communication skills, that's when it really hits me that I can't really talk to my four-year-old son. The extent of my conversations with my son are yes/no questions and giving him choices where he'll repeat his choice back to me. He doesn't spontaneously say I love you. He only says I love you after I've said it. And considering he repeats a lot of what he hears right after he hears it, it is difficult to believe that he understands what he is saying to me.

Luckily for me, I know he loves me. The way I know this is because of the 30 seconds I get with him when I come home from work. When I walk in the door, I hear, "MOMMY!" and he comes running to give me a hug. That's when I know he loves me. That's the 30 seconds I look forward to every day. Sometimes, it is the best 30 seconds of my day.