Perhaps if you’re the parent of a child with Autism, you can relate to the feeling of being on a roller coaster. Or, if you’re like me, maybe it feels less stable. Maybe it feels more like a see-saw. You could have long periods of a high, where the big kid sits at the bottom and you’re at the top of the see-saw. Everything looks great up there. In theory, not knowing you’re on the top of the see-saw, people believe it’s great. The thing is, the kid at the bottom is kind of a bully and you don’t know when he’s going to step off the see-saw and let you drop to the bottom. Suddenly, he’s gone and no one will ride the see-saw with you. The kid at the bottom of the see-saw isn’t my son. The see-saw isn’t my son. Autism isn’t my son; the disorder doesn’t own him. I will never let it own him. I love him and I know my son for the sweet, gentle soul he possesses. But Autism sure is a big bully sometimes.
I can see my son spinning out of control and I can’t seem to stop it. So many things set him off. Surely, constantly feeling out of control doesn’t feel pleasant for him. I know that having people redirect him all the time gets annoying. Calm down we tell him. Does he know how? Probably not. We try to teach him how, but the ideas don’t quite take. We don’t hit our family we tell him, but when he’s in the middle of one of those moments boundless energy or in a meltdown, he’s not thinking about family or consequences or anything else. I doubt his rational mind kicks in at all.
During the calm times, my son has a way of making me smile like no other. His laughter and his sense of humor make everyone smile. He loves, he hugs, and he lives to please. The top of the see-saw looks really good. He grows during these times. He does well at school. We went months on top of the see-saw, with me waiting for the bully to step off, and then, I thought, maybe I should just enjoy the view. Or maybe the bully had changed. Maybe, just maybe, the bully had decided to just ride the see-saw with us. We had normal hard times, like any families who had children with Autism, but nothing too extreme to handle. Up and down. It was just a ride. I could handle that. We soared for a while. We spent most of the time on the top, though.
This happens a lot. He gets short-changed. He had delays when he was little, before he started going to daycare. I feel horrible about it. Now that he’s in daycare, he’s not only caught up, but doing so much more than most kids his age. It makes me sad that I have to put him in daycare so that he can play freely and learn and grow more. I read to him every single night and make sure he gets that individual time, at least. On the mornings that he wakes up before Squeaker, I sneak him away to my room, snuggle with him in the bed, and watch Word World with him. I do everything I can to make up for it, but I know it doesn’t make up for all the times I have to walk away in the middle of an interaction. He’s not even 3 years old. Too young to feel that kind of disappointment. Of course, I do not fault Squeaker for this. None of this is his fault. He loves his brother and protects him with a crazy ferocity when anyone tries to mess with him, so I know he’d never hurt him purposefully. But he doesn’t yet know strategies to control himself and deal with the symptoms that his disorder makes him feel.
Our world is off-balance. His world is off-balance. I have to reaffirm with him in the moments of calmness that I love him. I feel that I need to remind him because when he’s tearing things up and going after me or his brother, I have to be stern and it’s more often than I’d like these days. He gets hugs and kisses and gentleness whenever possible to make up for these times. Last night things got bad, which lately is not atypical for us, but I snuggled with him before he went to sleep.
I want it all to get better. I want for us to figure this out. Medication won’t fix the problem 100% but it’s a piece of the puzzle. We need to continue to work on behavior modification. I still need to get a meeting with the school in order. I knew we can’t count of medication to continue to work all of the time, so without him having coping strategies and without us having strategies, we’ll always be up the creek when medications stop working. I have lots of strategies already because of my job, but they don’t work 100% of the time (he’s always stumped the specialists at school). We just need to tackle teaching him how to deal, but I’m afraid that he won’t understand until he’s much older. Chronologically, he’s 7 years old, but developmentally, he’s 3-4 years younger than that with his adaptive skills.
Anyway, I’m just not quite sure how we can best deal with the ups and down. It’s hard. It’s not him, though. I want to make sure that anyone reading this knows that. These behaviors are notmy son. When I talk about frustration and coping and cleaning up messes, my frustration is not with him, but with what Autism does to him sometimes. Most times, though, it makes him this awesome person with a phenomenal memory, an innocent sweetness, and a true desire to make others happy. The personality that lives at his core–the real Squeaker–wants no more than to love and be loved; I want no more than to help him do just that.
I’m always looking for more resources if anyone knows of any legitimate resources we could use to help us in this journey.
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