I’m pretty sure every evaluation in my son’s file dating back to 2001 notes that “the full assessment tool could not be completed in its entirety.” These standardized assessments are not designed for kids like mine.

In order to get the services he needs, though, they are a necessary evil.

We are lucky to live in a state that provides, through Medicaid, a fairly good range of home and community based services for people with developmental disabilities. This allows my son to access therapies outside of school, which have been a weekly part of his life since he was 3 years old.

But most of his therapies have been on hold for awhile now. I cancelled his home speech and OT sessions over a year and a half ago, due to safety concerns for everyone involved. 

Since that explosive wave of adolescent stress has settled a bit, I decided it’s time to try again. I found a new clinic, thinking that a change in setting might help reset his expectations and interest for these sessions. Finding providers who “get” my kid is not easy, but I’ve got to start somewhere, and this clinic has openings for both speech and OT.

First, he had to get updated assessments done. Read More

Wrangling Sheep

Sleep is sometimes hard to come by around here.

Between my son’s fluctuating internal rhythms, and the strain I put myself under to get everything done (especially at this time of year), counting sheep becomes a complicated calculus.

Image courtesy of

Image courtesy of

This past Sunday, while enjoying a local production of Irving Berlin’s White Christmas with my folks, the words of this song stood out to me as a challenge:

When I’m worried and I can’t sleep
I count my blessings instead of sheep Read More

The End Game

“Look up, buddy.  Look to the door, not at the ground.  See where you’re going.”

Each morning, as my son walks from my car to the front door of his school, he sweeps the sidewalk with his feet, kicking aside anything that clutters the smooth pavement.  He’s been working hard to practice looking forward so he doesn’t get bogged down by every rock that disrupts his clear path from here to there.

In his IEP meetings, too, the educational team charged with selecting his goals and helping him to achieve them, has been picking at all the little spots in his current plan.  I have binders full of reports that tell me what my child can’t do.  We scour the data to generate lists of target goals.  Sifting through the deficits to be remediated and sensory needs to be accommodated, we try to prioritize and maximize my son’s time at school. Read More

Subliminal Advocacy

Sometimes I prefer a subtle approach.

I’d rather scheme ways to raise “awareness” outside of public campaigns and school-sponsored lessons.

I find ways to do it on the down-low; to plant covert messages and watch as misconceptions crumble.

Of course, there is always a need to engage in overt actions. When my son was in lower elementary school, he was integrated into the regular education classroom, with the support of a 1:1 aide. And, like any parent of a special needs student, I spent an exorbitant amount of time strategizing with his teachers and support staff how best to teach and support him, and set up “sensitivity training” and “friendship” programs to ensure that his peers learned how to be sensitive and friendly.

To be sure, my highly-vocal advocacy of my son’s educational and social needs helped to cultivate an inclusive mindset in his classmates and teachers.

But, I often delighted in staging more subtle acts of education to alter perceptions and transform stereotypes. When his teachers allowed for modified assignments, I exploited my son’s class projects in order to spread insidious disability awareness propaganda.

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