Believing in our autistic kids

It’s IEP meeting day, and after digesting three 3-year evals, a psych eval to determine cognitive level, and a draft IEP, it’s time for a public service announcement on behalf of autistic kids everywhere.

Believe in us.

I get it that the supposed experts must rely on standardized measures designed to outline accommodations and needed support for future-planning, in order to present unbiased data. I also get it that testing is performed in contrived, out of context settings and for those kiddos who don’t generalize or who need that context as a prompt, the result is low or non-performance.

But – get ready for the soapbox – every human has an asset, or two, or twenty. When any of us work to our strengths, we will perform masterfully – far above testing will indicate. We will vastly exceed your expectations, simply because it is joy, and love, tapped from that inner wellspring, that supply us with more than what we need.

For one of my guys, his asset is his ability to perform rote, manual and repetitive tasks that align with his personal interests, such as painting and exerting physical activity like walking or carrying items. His easygoing, tolerant disposition also helps as do a few fine motor interests around mixing/stirring and writing (OK, scribbling sometimes). In addition his ability to adhere to routines he has practiced over and over, and perform them in context exceeds what might otherwise be judged by his appearance. For example, he’ll shut off the alarm and then know it means get out of bed and go to the bathroom; get the mail; when the job coach says ‘time to grease,’ he’ll perform about 4-5 steps in order to proceed with that task.

We all use our best assets at hand. I recall one corporate setting where a rather unintelligent executive used his political savvy to get his job reinstated at the expense of my friend’s job. When my friend discussed this with a colleague saying how unfair it was that his politics let him win, not his smarts, the colleague replied “what else can he use?”

So while I suppose at some level I’m burying the sadness that my guy’s shape and color recognition is variable, that he cannot read, that his attention drifts despite the pharmacopeia I’ve administered over the years, and yes that there are times when I ask him to help and he says No – I’m mindful that this same bag of incapabilities called a person scraped and greased over 100 cake pans last week so that bakery patrons could have tasty cakes for their parties – that he hiked a 10 mile/3000′ elevation gain mountain Sunday without breaking a sweat – and that he just came over independently and answered his “get up and shower” alarm on my phone, then proceeded on to the rest of his daily routine – especially when I had to tell the spouse to let the alarm ring for a while, and not intercede, because I know he could do it.

I believe in you, most special son Jeff. Just as every parent in humanity perhaps believes in their kid, but I suggest even moreso – because we special needs parents have to learn to advocate and defend our kids’ abilities against the sea of others whose jobs it is to catalog their disabilities.

Believing in you made me get up this morning, makes me cry right now at the many things you do well, and gives me the strength to fight for you today, and tomorrow, and for hundreds of tomorrows. Andin a most hidden recess of my overstretched brain, believing in you gives me some tiny grain of hope for myself – that one day I will indeed declutter my life, start accomplishing what matters to me and the world which often has little to do with my day job, and become the writer I always hoped to be – simply because I believed.