My Greatest Fear as an Autism Parent, and the 2 Words That Give Me Comfort
This is blog I’ve dreaded writing… the one I’ve avoided for a while.
Maybe it’s because I’m scared of the reaction of other parents. Ever since I started blogging, I’ve opened myself up for the possibility of criticism. But I told myself from the beginning that this is our story, our journey. And that as hard as it can be to open yourself up to the possibility of ridicule (even within my own community) that I would be 100 percent raw, 100 percent open. About all of it. Maybe the truth is, I’ve been scared to write this particular blog because of the place it takes me to — the place I so desperately try to avoid thinking about. The darkest corner. My deepest fears. The thing that taunts me at night.
My son is 7, going on 8 years old. He’s big for his age, about 90 pounds to be exact. He’s classified as nonverbal and uses an iPad for the majority of his communication. He’s also classified as severely autistic. He can go into intense meltdowns and at times, be impossible to calm down, and yes, he can also be aggressive. Let me be clear, I’m not scared of my son. Not in the least. What I am scared of is, what if the day comes when I am scared of him?
Applied behavior analysis (ABA), occupational therapy (OT), speech therapy, pills, etc. — we’ve almost tried it all. Friends message me with potions, lotions, news articles and any other latest and greatest thing believed to help “cure” autism. Truthfully, just between you and me, I don’t need anymore suggestions right now. Yes, I know, they mean well. But the truth is, I need a miracle.
Quite some time ago, I accepted the fact that my son most likely will need lifelong care and that I would be his caregiver. I accepted the fact that as a single mom, there’s a possibility I may have to travel this road alone. What I haven’t been able to bring myself to think about is the possibility that me taking care of him won’t be an option. I can’t bear to think about the likelihood that one day he may need care I will not be able to provide. In the event we’re not able to get his meltdowns under control… what then?
There it is. The monster in the dark. The nightmare that torments me at night. I can’t bear the thought of a day where I don’t wake him up and he darts to my bedroom, climbs under my blankets and for that brief moment, lets me cuddle him. Or at night when I tuck him in and we go through our routine when I tell him goodnight and how much I love him. This is one of the few times I get to hear his sweet voice when he attempts to mimic what I’m saying. Yes, it’s echolalia, but I don’t care. I hear his voice, and for just a few minutes at night, we have a “conversation.” It’s my absolute favorite time of the day. I live for that moment. I can’t bear the thought of one day not having that.
I find myself praying more and more these days. I pray for a miracle. Not for him to be “cured” of autism. I pray for relief from the meltdowns, not just for me but for him too. I pray the day won’t come when I have to face my darkest fear. I pray for a lifetime of “good mornings” and “good nights” with my son. But I’ve also found myself learning to pray that, should I not be granted that “miracle,” I will find the strength to handle the alternative.
For now, I enjoy and am thankful for every day I have with my son. We continue to work hard with therapy, and I continue to pray for our miracle. I read a quote recently: “I don’t just believe in miracles, I rely on them.” Sometimes, the words “me too” are the only thing someone really needs to hear to know they’re not alone. So while I’m not (at this moment) looking for any more suggestions or links or 1-800-get-out-your-credit-card “cures,” what I really could use right now is a simple “me too.”
Is there anybody else out there “relying” on a miracle?
Because I know I am.