I spent the first hour of the school day today at Little Man’s school, meeting with the principal and social worker over an incident yesterday. I spent most of last night alternating between anger/frustration, and tears. We’ve gone so far backwards. Every day is a roller coaster. He’ll have an amazing day, and then he will have an awful day. He’s crying every day, or he’s lashing out. And that’s just at school. We had a hideous weekend, with a couple of high points, with lots of tears, meltdowns, outbursts, a bloody nose (when he accidentally hit himself in the face while trying to open a soda box), and a hole in the family room wall.
I’m spent. I’m exhausted. Sleep came last night only with the help of medication. My head is spinning constantly. My heart is breaking. My brain keeps playing out all kinds of scenarios with school and home. I feel trapped and torn, exactly as I did two years ago, on high alert every minute of every day. The refrain replaying through my mind is, “I can’t do this. I can’t live like this all year again.”
When does this get better? When is he better able to manage? Why have we gone so far backwards? What am I missing? What else do I need to be doing for him? What am I doing wrong? What more can I manage to minimize his anxiety/upset? How do I help him keep it together?
I’ve been getting angry. I know he knows his tools, he just hasn’t been using them. So I get mad. And then I feel guilty, and get so completely sad. He spends much of his day apologizing to everyone around him. He says he’s trying. It doesn’t often feel like it. But then I wonder what is going on inside his head? What demons is he really fighting? Is he trying and this is just the best he has right now? We can’t keep going the way we’ve been going.
He did have a better week last week, at school. Boundaries were set, and expectations laid out. He’s not thrilled at having his meal ticket taken away, but he responded as I thought he would…with compliance, and meeting those expectations. Did it take a toll? Probably. But it’s the best thing for him.
I feel I have nothing left in the well, though. Everything is too much. I flinch when my phone rings. My stomach rolls up into my throat when I see an email from school. I am anxious when I pick him up everyday, waiting to hear how his day was. It’s making it so difficult to deal with the rest of our household’s needs.
This is the dark side of parenting an autistic child. It’s often lonely and sad. It’s draining, exhausting. We’re doing everything we know to help make it better. But it’s hard to remember on days like these it will get better.