This World Autism Day, I am not wearing blue. You won’t find cute puzzle piece picture frames on my wall. We will not have cupcakes and invite the neighbors as we did for World Down Syndrome Day a few weeks ago. I LOATHE autism. With every fiber of my being I want to vanquish it from our lives. It takes all that is good in our family and shreds it.
Yesterday, on a beautiful Easter holiday, full of celebration and joy, I was peed on, bitten, scratched, head butted, spat on, pinched, and had furniture and toys thrown at me. Bo was out of control and we were unable to regain it. Nothing in our bag of tricks worked. It was discouraging and disheartening and demoralizing and depressing and any other sad “de” words I can think of.
Do you remember having a two-year-old? Do you remember her lack of impulse control? Do you remember holding so tightly to his hand when you went into a store for fear of what he might knock over? Do you remember being caught off guard when she suddenly threw her plate off the table when she didn’t want dinner? Or having a toy whacked into your face when you were resting your eyes on the couch? Or the “throw-himself-on-the-floor” temper tantrums?
Imagine living like that daily, for years, only add on 60 pounds and the anxiety of never being sure how that child will react to a stranger. Is he going to spit in the face of the elderly man giving him knuckle bumps at the grocery store? Is the cup he’s currently drinking so sweetly in church going to be launched into the back of the lady three rows up? Is he going to reach out a grab a fistful of the nearest toddler’s hair?
We are constantly in a state of red alert, always scanning, forever anticipating, and yet, frequently caught off guard. It’s exhausting. There is no down time, no relief.
We love him. We have sweet and wonderful moments with him. He snuggles us, gives great hugs, seeks us out for affection, and teases us…but always on his own terms. But then he retreats, the veil goes down, and we are closed out. I see him try to reach us, showing us anyway he can that he is angry, or hurting, or sad. Worse, if we accidentally hurt him, for example, bump him with a door as I did the other day, he holds the hurt in so tightly and lashes out. Tears leak out after a few minutes, but he refuses comfort, not understanding that the pain was unintentional.
I am afraid of the future.
As he gets older and bigger, I don’t know how to keep him safe. I don’t know how to include him if I can’t keep those around him safe. I want to reach him, to comfort him, and to calm him. I want to guide him and parent him.
But I don’t know how.
Autism and its friends, OCD and ADHD, have stolen this kid from me, even though they had him first. I want him back. We can even share him if I can just have enough to work with.
That’s why this day is so hard for me. There is no celebration today, not for this. We celebrate Bo, always and forever. He is worth it. We celebrate his life, his light, his joy, and even his Down syndrome, but not his autism. We barely tolerate that.
I applaud those braver, stronger folks who are bringing awareness and wearing the blue. Maybe awareness will bring assistance and all of us can get the help and hope we need. But today, I grieve and mourn. I throw myself a pity party and whine a little, cry a lot, because tomorrow and the next day, and the day after that, we forge ahead. We research, plan, adapt, and duck. We do what we must to love our boy, autism and all.