The Rigidity of Autism

I’m sitting in an armchair in front of a big picture window with a pastoral parkland view in the foreground and mountains in the background. I’m at a library which is near the autism center where my boys have therapy.

They’ve had a two-month behavior therapy hiatus because of some issues, but we are back at it tonight. And I have PTSD because there was an hour and a half precursor of Charlie screaming and writhing on the floor before Jeff and I coaxed, enticed, threatened, and finally coerced him into the car. Charlie thinks therapy is babyish. Because his friends don’t go to therapy, he thinks he shouldn’t have to go either. I’ve told him all the reasons why he needs it, but sometimes autism looks like a brick wall. A brick wall that can shout at you. Because I’m the parent who gets to take and pick up from therapy sessions, I will enjoy listening to the lamentations both there and back #perksofbeingamom #yay

The rigidity of autism is a weeping blister on the back of my heel. It’s a cut at the base of my thumb, a wound that gets wet with frequent hand-washing, is overused and stretched, which makes it reopen and bleed. This inflexibility is a heavy steamer trunk I drag along relentlessly behind me. Because I can’t leave it behind without leaving my children behind.

My kids’ brains can get stuck on something—whether it is something they want or something they most assuredly don’t want. You can try to change their minds, but you will find that it’s painful and awful and doesn’t usually work.

I’ve learned from all the behavior therapy that has happened in our home over the years that as a parent, I must outlast the tantrum. Giving in ensures duplicate behaviors next time I ask the child to do whatever thing I am asking him to do. When I outlast the tantrum, remaining calm and neutral (ha!) in the midst of screaming, I win. The child learns that negative behaviors don’t work, but that I am here and ready to help him do that difficult thing, as soon as he is calm.

I outlasted the tantrum tonight, but at what cost? I’m ready to go to bed and it’s 4:42 pm. The atmosphere in our home and car was war zone-ish. I’m ready to throw stacks of pottery at a wall and cry myself to sleep. Jeff and I have to assume a totalitarian role at times like this, because unless Charlie is made to go to therapy, he will never agree to go. The bigger the child with autism, the bigger the belligerence.

It’s the same story with Truman and church. He will NEVER NEVER EVER willingly go to church. EVER. This is because he doesn’t want to wear church clothes, sit quietly, and deal with the sensory overload of the chapel during sacrament meeting. He prefers tooling around at home in tiny shorts and no shirt, and playing while eating crackers. Getting one’s family to church is always a circus (I assume; what do I know? My kids aren’t like other people’s kids), but Truman takes circus to the next level. Jeff and I have to “process” him, meaning one of us holds him (angry, screaming, kicking), while the other one puts his church clothes on. Once he’s processed and we arrive at the church, he cools off and does okay.

Have I ever mentioned that transitions suck for my kids?

So why am I writing about this?

I’m in an unhappy state as I decompress from the therapy drama. It will ramp back up in an hour when I pick the boys up after their session and hear how Charlie wants to be rewarded for his horrific behavior. I’m weary, being the front line for all of my boys’ neuroses. It’s a painful place to dwell. No one wants to live on a war front.

But this is where I live. And (perhaps depressingly) it’s vastly easier than it was in the past because I’m not handling Jack’s behaviors in tandem.

Just this morning as I stepped out of the shower, I thought about how my parenting life has really taught me to trust God. I’ve seen how he comes through for us, time and again. I am not the best at remembering this when Charlie is screaming and Truman is kicking the walls.

I think I need a mantra phrase to literally cry out when I’m in one of these craptown battles against the autism wills. Something like “Push Through,” or “I Will Win,” or “Children are an Heritage of the Lord,” haha.

I’m open to suggestions.

  5 comments for “The Rigidity of Autism

  1. September 18, 2017 at 9:57 pm

    I think you should shout, “we are highly favored of the Lord!!!”

  2. Heidi
    September 19, 2017 at 12:16 pm

    Shout shout let it all out! An inspired hymn

  3. Tammy
    September 19, 2017 at 2:54 pm

    I always sing ” peace and plenty here abide, smiling sweet on every side”….then laugh hysterically….. 19yr World of Autism veteran. We should have badges or t-shirts..or s secret salut.

  4. Sarah
    September 21, 2017 at 9:38 am

    “I am unable to quit because I am currently too legit.”

  5. Barb
    September 21, 2017 at 2:37 pm

    Sarah’s suggestion ^ is so so good, LOL.

    I think I WILL WIN is particularly satisfying.

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