January 19, 2011 by Marj Hatzell
Some days are better than others. Today? One of the others.
Due to inclement weather, the Bugaboo had no school yesterday. Again. And four days in a row is tough for him. See, Bugaboo likes his schedule. He likes to go to school. He likes to ride the bus to school. He likes everything to be the same, every day. Me? I go nuts when things are the same. Bugaboo? Thrives on it. He’s typical (if you can call IT that) in that he’s an autistic kid who likes consistency and likes to know what to expect. The unknown is too much for him to handle.
Days off? I dread them. They are better than 2-hour delays for inclement weather, i can tell you that. A two-hour delay is hell on earth for that poor child. He is all dressed, ready to go, but there is no bus. He gets to school and shortly thereafter it’s lunchtime. The whole day is thrown off. A day off is actually better for him. It’s just not better for us. But I put my big girl panties on and deal with IT.
Yesterday was a tough one. Stim city. He got into everything he could find. Instant breakfast. Coffee grounds. Dog food. Sugar. Salt. Dry rice. Dry oatmeal. He was making breakfast on the floor of the basement, I reckon. Stim, stim, stim. And then? Later on the wicked mood swings started. He starts out giggling with this infectious, maniacal laughter. It’s like nothing I’ve ever heard. Then, moments later, he begins sobbing. Uncontrollable sobbing. Nothing provokes it, he can be twirling his favorite toy and then BAM. Sobs. Or taking a shower. SOBS. It’s so strange. This usually happens when he is either getting ill or he has had a major developmental change. He tends to lose sleep (and so do we!) and is cranky. And so are we. Because cranky Bugaboo equals super cranky Momma. Momma needs her beauty sleep, yo.
Today he has been up since one. As in the morning. I went to bed at 10, since he was up past nine. That’s three whopping hours of sleep, if I fell asleep right away. I don’t remember because I’ve been up for three days, almost all night. This morning he has yet to fall back to sleep. Which is good since it is fifteen minutes until I have to wake him at this point.
The funniest part is that he won’t fall asleep on the bus. He won’t fall asleep at school. He’ll be super-duper hyper (even more so than usual) and will no doubt bite the holy heck out of himself. I hate that. Hate is such a strong word and I usually prefer not to say it but I don’t know how else to describe this strong feeling. I HATE watching my baby bite himself. I HATE watching him sob and scream and tantrum for four or five hours straight and I HATE the helpless feeling I have because I have no way of helping him. I have no idea what he needs or wants. It is so frustrating to have to sit calmly and ride out the storm. Especially when I’m screaming and crying inside.
For every time I have a rough day there are twenty good ones to take its place, honest. I love my son. I really wouldn’t change anything in my life. It’s just that sometimes I hate what this has done to his brain. I hate that he can’t tell us what he needs or wants and can’t tell us if he is sick or hurting. I hate that he will need lifelong care and I won’t always be around for him. I hate that I may never get to hear his voice. I hate that we may never see his true potential, that others won’t see him for how marvelous he really is. I hate that his intelligence and ability are overshadowed by what he can’t do. I hate that others look at him with pity or scorn. My heart is breaking.
But I love him. This is one wild ride we’re on, for sure. Sometimes I just wish I could get off for a little while.