Monthly Archives: June 2015

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.

Balancing structure and free time

For kids on the autism spectrum who need structure – how much is enough, versus too much?

It’s a worthwhile question that arose out of a lovely group hike I sponsored yesterday with a wonderful teacher-participant. After many years when unstructured time devolved into inappropriate pursuits like public nakedness, refrigerator raids or masturbation, our boys live a very scheduled life. I always thought this was a good thing but as we approach age 22 and at some point, living elsewhere – I kind of wonder if it’s time to loosen up.

My twins represent the two sides of the coin about now.

Jeff seems to enjoy his free time and when bored with one activity, jump-starts readily to the next without asking. Rarely does it bridge into the realm of inappropriateness, although last summer I did create a video model on “asking Mom to leave the porch when you want to go outside.” Our prevocational forays keep him pretty busy about six days of the week now. Hmmmm.

Will, on the other hand, lately is bored after dinner when it’s free time-time, and I’m seeing multiple bolts up to his room to disrobe and lay naked while doing a host of repetitive fine motor tasks I’d categorize as non-learning focused, repetitive stimmy-play, or in some cases – like tearing the pages of books and magazine, or rooting through Mom and Dad’s drawers and bureaus – trashing behavior that’s irritating and definitely not to be encouraged. He has 4 days of caregivers’ attention Mon- Thurs after school, then a 5th day of in the community time with me – all followed by free time each evening. Jeff seems to enjoy his evening free time, while Will’s not coping with it well now. Hmmmm.

Finding the best balance of structure and free time seems a little elusive. I have all kinds of thoughts, here in the middle of the work day when I should be doing about 50 other things. – Time for some deeper reflection, and the kind of closely listening to my kids and their behaviors that may be tough at first (especially when I’m perpetually under rested like now), but that always brings us to a better place.

Answers, dear readers?