Prepping for the Long Haul

As your special needs child reaches high school, they tell you about all these things you need to do (legally, financially, educationally) in preparation for your child’s “transition” to life after public school.

But they don’t tell you how to prepare for your transition … from parent of a school-aged child to the guardian and caregiver of a disabled adult.

My husband and I watch out of the corners of our eyes as our son’s same-age peers go to their proms and graduations, and pack up for college or careers while their parents mentally and physically gear up for their soon-to-be empty nests. We admit privately to pangs of sadness for our kid, and for us. Our son will miss out on so many “typical” young adult experiences, and our friends’ “phase two” of parenthood will look very different from our own.

These twinges of feeling “left out” are peanuts, though, compared to the anxiety of staring down the road of long-term caregiving. I worry that I’m not really up to the task. Are we making the right choices for him? As the terrors of public school IEPs fade away, will I have the strength to wage the battles that await in the sparse world of “adult services”? Read More

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Assessments

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

To that “Other” Mom at Zumba

Dear Vigilant Mom at Adaptive Zumba,

I was watching you in Zumba class and I hope you don’t mind if I offer a bit of advice. This class will be really great for you and your son …. if you could just chill out a little. (No, this isn’t a critique of your dance moves, that’s for another letter.)

I bet you heard about this fun cardio-fitness class offered by a local parks and rec adaptive program from other parents whose teens/young adults attend. I’m sure it took you a few months to get up the nerve to sign your son up, because you just never know if he’ll like it. But the once-a-week class is less than 20 bucks, right? So, you gave it a try.

I heard you tell the instructor that your son has never taken a class like this before, but I could tell from the first day that your kid really likes being here. Oh, I know there was some anxiety at first, since he (and you) didn’t know what to expect. But it was clear by the third class, he was so happy to be there. I mean, of course he was. Upbeat music. Repetitive movements. Welcoming instructor. Enthusiastic peers. Wall-to-wall mirrors. It’s like Zumba was made for him, right? It’s a dance party in here.

I watched you encouraging him to follow the instructor, and showing him the steps. You were so happy every time he started to move his arms or legs (but usually not both together) to follow the routine. He truly has such good rhythm! But he’d only move for a few beats and then pause to stand and watch or spin those beads. You seemed a little disappointed when he stopped dancing, and I could see that you were struggling to find the right balance between insisting he dance more (“I know he can do this!”) and letting him do his own thing. Read More

Hello, 2018

At first glance, it doesn’t seem like January 1, 2018 is all that different from January 1, 2017 for us. We’re still plugging along on all of the same things, still working the same issues, still in familiar places and routines, scripting the same old movies.

But, in reality, life has shifted quite a bit from this time last year.

This time last year, Read More