You make think that's sarcasm--it's so not. Being able to run my dishwasher without someone having an OCD meltdown is nothing short of miraculous. And it would not have been possible without the arrival of the back to school fairy.
Let's jump back in time to winter. Beh was doing well, exceptionally well, in every area of his life. His language was blossoming, his academics were thriving, and his behaviors were nearly non-existent. In our nine years of wrestling with the challenges of autism, this moment in Beh's life was the best of them all. Sure, he was still autistic, but the beauty of his autism took center stage rather than the challenges. Every afternoon when I took his daily sheet out of his backpack and read about his school day, I was overcome with pride. My kid was doing so well! And knowing how hard he had worked to get to that place made it all the more sweet.
Then the rain came down.
It's one of those things as a mother you kick yourself for. If I'd only know how this would have affected my child, I would have done it all differently. But the thing is, you don't know; there's no way to know. But you kick yourself nonetheless.
My mother-in-law was diagnosed with breast cancer. There wasn't a doubt or a moment's hesitation in my mind--she needed to move here, move in with us, so that she could get the best treatment possible.
It was sure to be a big transition for Beh, but he was doing so incredibly well that I was certain he'd do incredibly well with this change.
Then she arrived. Her second night here, she asked if she could invite a couple of people over for dinner. Sure, no problem. Beh had been doing so well that he'd do well with this, too.
Early on, he felt his space encroached upon, so he took one guest by the hand and led him to the door, his way of saying “please leave my house.” I let him know that our guests were staying, and he was fine; he used other coping strategies. At dinner time, having three extra people at the table, crowding his space, was too much for him, so again he did something that made me proud—he took his plate to the counter and stood there to eat. Great coping strategy. Then my mother-in-law violated his space again, coming over to him when he’d clearly made an effort to get away from everyone. Beh hadn't started on his carrots yet (he usually eats his foods one item at a time), and for some reason my mother-in-law thought it was her job to interrupt his chicken eating to try to get him to eat his carrots. That's when the worst thing happened--she touched his food. You don't do that to Beh; he thinks you're taking it.
He’d done so well utilizing all his strategies, but this was too much—and he pinched her arm.
And she slapped him.
That one slap started a downward spiral that Beh couldn't stop. Everything in his world unraveled. He lost his words, his school performance dramatically declined, and his behaviors increased. It was worsened by my mother-in-law every day violating his routines and messing with the fans he felt the need to control. He became extremely obsessive-compulsive.
A study recently published in the journal Autism found that people with HFA/Asperger's feel anxious about 50% of the time while people with neurotypical brains feel anxious only about 7% of the time. I would imagine that for Beh, whose autism is much more severe than someone classified as HFA, the anxiety percentage is even greater. So throw all of this stuff on someone who is already anxious, and it's no wonder that he becomes more aggressive. Any of us would if we were choked by anxiety and had no words to communicate that to someone else.
Then summer arrived. Beh doesn't qualified for extended school year (something that still boggles my mind), and without the predictable structure of school, the fabric holding together his little world unravels more. All of his medical data and behavioral records show the same thing--summers suck for Beh. Anxiety increases, behaviors increase.
It was a perfect storm. Not only did my mother-in-law's presence and the loss of a school routine upend Beh, but he also lost his only habilitator and respite provider in early July.
What that meant was me and three kids, locked in the house all day. Beh's aggressions had increased so much that there was no way I could chance taking the boys anywhere. Even the short ride to drop N. off at his screenwriting class in June had agitated Beh. He was so freaked out by it, even though he didn't even have to get out of the car, that he would pull my hair, as hard as he could, from the backseat. So when July came and we lost the only person who could watch Beh while I got out of the house for a few minutes, we stayed in the house. All day. Every day. I was the target for Beh's frustrations--whenever something went wrong in his little world, he sought me out and dug his fingernails into my arms as hard as he could. Having someone you love hurt you all the time . . . there aren't words. The house began to feel like a prison, but I didn't know what else we could do.
I felt like I was starting to drown. Things that I would normally be able to cope with more effectively became the cliche back-breaking straw. When my mother-in-law said that if we were only able to beat Beh without the authorities going after us, he wouldn't act out any more, I lost it. It was punch a grandma with cancer or have a mini-meltdown, so I opted for the latter. LOL, but I only had the luxury of sitting in my closet alone for five minutes to have that breakdown because, you know, kids. I figured it would be good to start seeing a therapist because a meltdown wouldn't fit into my schedule, but the irony was that even though I found someone nearby, I could never actually go see her because, you know, kids.
Why on Earth do I share all this? A friend on Facebook inspired me a couple of weeks ago. As autism moms, we tend to focus so much on the victories. My son ate a green bean! My daughter spoke a full sentence! And the positives are good; they are what keep us afloat in the rough sea of autism. Quite frankly, though, there's a lot of shit in that sea. Researchers find that the stress an autism mom experiences is similar to that of a combat soldier. We don't like to talk about it because we want to focus on our children's successes, but it is there nonetheless. And I think it's about time we acknowledge it along with the victories.
Speaking of those victories, I got to run my dishwasher. The three lights on the front of my new dishwasher have been too much for Beh's OCD to handle. He wants all three lights on all the time, but when the cycle is running, there is only one light on at a time, indicating which stage the cycle is at. Simply turning on the dishwasher prompts an aggressive meltdown, one that doesn't end until he can open the dishwasher and stop the cycle. I've resorted to washing my dishes in the middle of the night.
But I did dishes. At 8 o'clock in the morning. We've got some work to do to help Beh through his anxiety and OCD, and we have a new medicine plan and the routine of school to help with that. While we wait for all those pieces to fall back together for him, I have this dishwashing-gem to carry me. Might seem like a crazy thing to be excited about, but right now it's the greatest thing ever.
