“What do you want others to know about parenting a special needs kid?”
This is a common thread in special needs world. This theme gets batted around frequently on Facebook and the blogs and the newsletters. Moms chime in, one after another, I want you to know she is a gift! I want you to know how much he has taught me! I want you to know I am better because of them! Included with these joyful, optimistic sentences are photographs of toothy-grinned kids proving to you how sincere their sentiment is.
All of these little positive snippets of special needs parenting are true. Of course, they are. I, like all of these parents, stand in the special needs cheering section with pom poms in hand, shouting so loudly and smiling so brightly that you don’t dare pity me or my son. He is valuable and worthy and I love him with a ferocity I didn’t know I possessed until he came along. This is all true.
But you know how, technically, not saying something is a little bit like lying? We shout from the hilltops about the good without even whispering behind our hands about the bad. It’s starting to feel like lying.
What do I want you to know about parenting a special needs child?
I want you to know it gets dark. It gets really dark, it gets scary dark. It gets I don’t want to wash my hair, I don’t want to meet for drinks, I don’t want to answer the phone dark.
Everyone has a breaking point. I think special needs parents live a little closer to it. There are days I can’t see it at all, but I want you to know there are days I live so close to it I can shake its hand and smell its breath. Hey there, Breaking Point. Is today the day?
The other night my son and I were eating dinner. As I got up to get him more milk, my son said, “B-29 bombers have bombay doors.” It was probably the 500th time he had mentioned B-29s that day. I am not exaggerating. He talked about them at Target, he talked about them in the pool, he flew like a plane to the mailbox, he wouldn’t eat his tomatoes unless he could rename them B-29s, he pretended my car was a B-29, he got angry and punched the counter with his small-boned fist, bruising it, when his therapist made him do something that was not about a B-29.
It’s a form of OCD. It goes hand-in-hand with the autism or the brain damage or the PANDAS or whatever our team of medical professionals thinks we’re dealing with today. Whatever the cause, my son’s narrow obsessions get stuck in his brain, and nothing can pry them out. There are days that there isn’t a 2-minute window without mention of a B-29, and this was one of those days.
“B-29 bombers have bombay doors” was the statement that made me tango with my breaking point that day. I started crying. Standing at the open fridge with a carton of almond milk in my hand, I started crying. I’m talking real, tears rolling down my cheeks, unable to stop shaking, ugly crying. I looked at my sweet, sweet son eating his gluten-goddamn-free chicken nuggets because I will try anything, and realized that this isn’t getting any better. We aren’t making any dents, and I don’t have any more tools to try.
I fell apart in front of my kid. I’m okay with that, emotion is human, but I want you to know that it took everything I had to stop crying and pull myself together. It took everything I had.
What do I want you to know about being a special needs parent?
I want you to know that on most days, this isn’t easy, and on some days, it just isn’t doable. I want you to know that I have a law degree, a nice house, health insurance, good non-judging friends, and yet, even with all of that, I still stood in the greeting card section of a Walgreen’s yesterday and wondered how long I would get to rest in an in-patient facility if I started picking up crap off the shelves and throwing it around the aisles while yelling like a lunatic. I want you to know that the mailman just rang my doorbell and I hid behind my counter because a fake smile might kill me today.
I want you to know that in between the cheering and the optimism and the toothy, grinning photos, some days are really dark.