This first 2020-2021 winter of COVID–19, we all have been battling Mother Nature. She won v. our pipes, and it was a spectacular inside-the-house mess. I put my son in charge of the larger, louder, borrowed wet vac, and it was sensory overload for hours. Triage is now over; the extensive repairs in the house will be a monster. He did great, with just a bit of his auditory stim.

All things considered, he probably coped better than mom did.

But, in the general day-to-day of life, do I disregard/ignore/allow his stimming? It depends. How does it make his life better?

Usually, the purpose of the repetitive action of perseverating is to find immediate individual comfort and security. In our world of raising children with neurodiversity, I hear often we should allow it, tolerate it, let them indulge in it.

I think that depends on the longer-term purpose. And, to provide something to ponder further, here is a link to The Brain’s Background Noise May be Meaningful After All (WIRED).

However, back to perseverating: When John was in elementary school, he chose humming. Loudly. Academically-disruptive. So, we have been working on re-directs for at least 9 years.

There was a recent mom-eureka-moment, when I noticed him go for 3+ hours, neurotypically quiet, not humming, when he could have, but didn’t, because he chose. (It was in our church’s media control room where we volunteer.)

Now, to be sure, he does stim occasionally for Let’s-aggravate-Mom reasons, deliberately starting as I enter the room. Attention-seeking. This audience leaves that room pronto, asap.

He may also stim for causes of grief and boredom. In the spirit of “water-the-flowers-not-the-weeds“, and “name-it-and-set-limits“, he is re-directed to stim in his personal bedroom anytime he prefers. (He also hears this boundary regarding puberty issues requiring privacy, if you catch my drift.)

So that’s my compassionate re-direct, which I always hope he chooses later (delayed gratification) to instead stay in the moment of joint attention.

Tomorrow’s hope, his future, is far more important than today’s comfort.

His current choice of stim could really affect the future of his relationships, in every direction.

There is another issue that affects both our short-term comfort compared to the longer-term benefit. I have been stalling on a formal Local Education Authority (LEA) (school) educational evaluation for years. In kindergarten, the wrong set of tests were used on nearly-non-verbal John, and the result was a pretty low IQ number.

In subsequent ARDs, the Committee decided John wasn’t stuck in his learning, that he wasn’t that IQ number, and that he continued to make academic progress. My mom-fear was his repeat performance of not caring, his not understanding the unintentional consequences of doing fast-and-sloppy work that would result in a label of bias against his possibilities. Our ARD discussions were transparent, we all agreed that he didn’t yet have any label other than autism. They all knew mom was in no hurry for a worse label, given the research available and with moving through developmental delay with nearly 24/7 interventions.

I agreed to have a discussion with the diagnostician and the on-going speech-language pathologist (SLP). We agreed they would push John, using humor and as many inclusion tools as possible, to make some educational evaluations on his academic progress. Not included is any IQ testing. I agreed to trust them and their educator hearts of coaxing out of John the best they can of the best he can do.

For quite some years, we have been watching the issue of curricular LRE at his local LEA. As a parent, it was a gentle charm offensive of both the law and what John’s learning strengths needed for his best successful learning. Like the very best parts of Wright’s Law, in your face.

So, now the time has arrived, and I have had many conversations with the powers-that-be. John has a huge opportunity he has earned.

Can he move from Specialized/Explicit Instruction, into the world of Resource with Curricular LRE and hold his own?

So we are back to the trade-off for both he and mom of short-term comfort at the expense of longer-term quality of life.

Time will tell. I will keep you posted.

Keep our kids moving forward. If they are alive, there is always hope of continued neural pathways.

Peace,

Gayle