As an autism mom, I probably have a ton of secrets I don’t even know about. I don’t realize they’re secrets. But one stands out, and I’m not proud of it. I desperately want to be perfect, superhuman and without emotion. I want to be unabashedly proud 100 percent of the time. I want to stand up, stand firm and stand strong always. The truth is that’s not possible. I’m not perfect or superhuman. And I definitely have emotions. This secret shames me, even though it shouldn’t.
I’m sometimes embarrassed by my son’s behavior because of his autism, and I’m mortified by my embarrassment. That is the cold, hard truth as they say. Whoever “they” are. I’m not, by any means, embarrassed by his autism. I need to make that clear. It’s not all of the time or even most of the time. It’s probably 1 to 2 percent of the time realistically.
And it’s the negative behavior that’s embarrassing, not his autism. It’s the screaming in the middle of the store. It’s when he throws himself across the floor at school, because I didn’t try to prevent the meltdown — I fought it. It’s him turning 8 and having behaviors that aren’t typical of an 8-year-old. At 5, a meltdown isn’t as obvious. At 8, it is.
And I hate it. I hate myself and that emotion. I hate that I let other people’s opinions or glances get to me. I can feel it coming, and I work hard to extinguish it as quickly as possible. Because it doesn’t help anyone, especially my son.
But I would be lying if I said it didn’t exist. I would be lying if I said it never crept in and engulfed me every once in a while. Usually I don’t notice or care if others are watching. I almost like it because maybe they’ll learn something from staring. Maybe they’ll see a mother love her son who has a disability. Maybe they’ll learn to be more tolerant. Maybe. I just don’t care. Most of the time. But, sometimes, I do. I confess.
I think many moms with kids with disabilities like myself might judge ourselves by a higher standard. A “typical” mom would probably be embarrassed if her child threw himself across the floor at school. But a special needs mom immediately feels guilty for that embarrassment. We feel guilty for a somewhat typical emotion. What could I have done to prevent it? What could I have done to help my child deal with the situation? How could I have eased his pain? How dare I be embarrassed because my child can’t help it! Then the overwhelming guilt pours over us like molasses, almost paralyzing us and impossible to wash off, hindering in the crevices for days or weeks…or years later.
It’s OK moms (and dads). We’re human. Our kids are often embarrassed, too. Next time we’ll be better. That will help all of us.
The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.