I mostly ignored April this year.
Autism Awareness Month – or Autism Acceptance or Action Month – whatever color we’re wearing these days.
I know I should use any forums I have to promote awareness and encourage acceptance and demand action for those living with autism.
But autism is loud enough here already without that extra amplification.
There’s only so much I can handle.
The April theme around here seems to be irritability.
His, and mine.
I’m irritated with his health insurance company, who somehow forgot that I am his legal guardian and am, in fact, authorized to talk about his care (no, you can’t actually speak to the “member,” although, believe me, I would love it if you could).
I’m irritated with pharmacies and prior authorizations and potential drug interactions and doctor’s appointments that take forever to get scheduled.
I’m irritated that the notes from his dermatologists’ appointment say, “Patient was offered full body check and refused,” when they really should say, “Parent/Guardian requested a full body check, but patient was unwilling in the 30 seconds the doctor allotted to give him a chance to agree.”
I’m irritated for friends managing very challenging aspects of this disability that are not worthy of any April autism celebrations.
I’m irritated by the difficulty of describing my son to potential new providers – how to paint an inviting and positive picture that is also realistic about the ups and downs they might encounter on the job.
Because my son is irritable this month, too.
He has had some nice moments – time with our extended family, outings with his day program, even trying a few new foods (and he liked the broccoli calzones! Yes!)
But in between these glimpses of contentment, he’s agitated at things seen and unseen – and his irritation takes over his voice, his body, and our shared living quarters.
I’ve pulled out the blue tape again, to block his perseverations from the kitchen while I’m cooking.
I keep my office door closed more often.
I’ve added a “Do Not Touch” sign to the kitchen faucet to remind him that he and I are not in agreement about how the sink should look.
We argue over clothes and chores and cleanliness and carbs.
I try to choose my battles, still searching for the right balance between his autonomy and my necessary caregiving.
Some days, everything is a battle, and I’m waving the white flag over all of it.
Sorry I bought you new shoes, kid. How dare I? You just keep wearing your old worn-out ones while I figure out an appropriate “transition” plan…
My son often sleeps in late, and is usually agitated on waking, so I find myself in the mornings reciting a variation of this prayer that I’ve seen making the rounds:
When he is snippy, it’s hard not to take it personally.
I tell myself that I need to have thicker skin. He is allowed to bitch and stomp around if he wants to, and it’s not about me.
Well, sometimes it is about me. I’ve kept my hand in my pocket for too long, my hair is not the way he likes it, my sleeves are pushed up, I’m using the wrong pen.
My son takes a medication that is approved to treat “irritability associated with autism.”
I am associated with autism, and I am also irritable.
Is there a pill for that?
I worked with a Relationship Development Intervention (RDI) therapist for a few months who reminded me that my son needs opportunities to just be with us – no demands, no expectations, not even suggestions – to just have someone there, to be with him as he is.
He doesn’t always want that connection, but when I really stop trying to help or instruct or explain, the irritants fall away on both sides. He doesn’t have to hear my annoying requests or questions, and I feel a little less worried about his behavior and health and whatever I’m supposed to be doing for him next.
If he’s willing, we can just hang out and practice not getting on each other’s nerves.
I don’t always know what is beneath his agitation.
But I know what’s beneath mine. I am worried for this kid I love, frustrated that there are no easy solutions – and his agitated noises make it hard to think (or make the needed phone calls).
All I can do, some days, is step away – put in earplugs, go for extra walks, turn up the music – to try to get myself in a better place in order to help him.
And, hey, giving myself a break from him gives him the benefit of a break from me, too.
Almost daily, my kid will come close to me and abruptly turn his back – blocking my view of whatever I’m doing. It’s not a snub, though.
“Itchy!” he declares, demanding my assistance.
I can’t seem to relieve a lot of his other irritations lately.
But this one, I can do.
I scratch his back, and – at least for a short minute – we both feel a little less irritated.
Thanks for being here. See you in May (and Go Suns!)
