Monday was ugly. It started out that way. When you are woken up by a thrashing, yelling child in your bed, you know you’re not off to a great start. When he wakes up and the first words out of his mouth let you know everything about that day is going to be a challenge, it’s not a good sign. When you lose it and are yelling by 7:10am, even at your usually-pulled-together daughter, you know it’s just one of those days when you are just so incredibly angry at that thing called autism.
I was angry. I was just so angry….not at my child, but at that thing that makes his life different and difficult. I was so mad. And this wasn’t the first time I’ve had a day like that. Irrationally, it felt if I yelled loud enough and often enough, I might get through to his autism and scare it off, at least for the morning. Now trust me, I know yelling at any kid isn’t stellar parenting. Yelling at my noise-sensitive autistic child lets you know I’ve lost the battle for the day, because yelling makes him shut down quicker than anything else.
Why do I get so angry sometimes? Because autism pervades his entire life. It makes it hard for him. It makes him sad. It makes him stressed. It takes the most normal situations and turns them into something full of anxiety. I was angry because he can’t take showers due to his sensory issues. I was angry because getting him into and through a bath is a draining process 9 times out of 10, in which I have to stand over him and check off everything he’s supposed to do…get his hair wet, wash his hair well, rinse the shampoo out completely, wash his body…..he has to be reminded every time of every thing. I was angry because if I don’t tell him what to wear, he will always come downstairs in something entirely weather-inappropriate. I was angry because the morning ritual is such a trial as his ADHD meds don’t kick in until well after I’ve dropped him off at school. I was angry because even though the morning routine is a routine (and not a new one at that), I still have to walk him through it every single morning. I was angry because every word that came out of his mouth that morning was rude, mean, or full of his own anger. I was angry because finding something, anything, he will eat for breakfast or lunch often results in a showdown. I was angry because even though he loves our Elf, Scoutie, it stresses him out this elf is coming and going every night. He was up at 5:30 to go downstairs and find Scoutie. Once he knew where he was, he was able to go back to sleep (and into horrible dreams). I was angry because I simply can’t wrap my brain around how this child is going to survive middle school, much less anything beyond.
There are days I want to stand here, shake my fist, and curse at autism. I want to yell and scream til I have no voice for what it does to my child, and every other child/adult who has it. I want to stomp my feet and throw a tantrum for everything it takes away from us. I don’t want to have to medicate my child with expensive, controlled medications. I don’t ever again want to have to hear him say this is too hard and he doesn’t want to live anymore. I don’t want to have to figure out how to make him a weighted hoodie so he can unobtrusively find comfort when he’s away from home. I don’t want to have to deal with people staring at my child walking around with noise-blocking headphones and a giant, fluorescent orange stuffed shark. I don’t want to have a 3-inch binder with all his evaluations and IEP reports. I don’t want to have to think about IEP meetings, special education, accommodations. I don’t want to see his tear-filled, anxious face when schedules go off track. I don’t want to have to haul my child to a psychiatrist every other month. I don’t want to have to worry every minute I’m away from him. I don’t want to have to do weight checks with the pediatrician every three months. I don’t want to have to explain to anyone why my child refuses to talk to them, or why he’s having a meltdown in the middle of the store, or why I’m letting him have my iPad in a restaurant. I don’t want so many other things we deal with on a daily basis. And it makes me angry sometimes.