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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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

Be Prepared

In the midst of all the preparation required to take a trip without your special needs child, you might wonder, “If ALL this is what it takes to ‘simply’ have a weekend away, it really might not be worth it.”

If that getaway is a success, though?

It’s worth it. So worth it.

But it wasn’t just because of all that prep that our recent three-day kid-free weekend worked out so well. Read More

How a Clothespin Might Save My Sanity

This little thing here? This cheap wooden contraption that hates the electric clothes dryer for making it obsolete? Well, it’s useful again, at least around here.

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I hope I’m not jinxing our experiment to say out loud that it’s working.

See, my son “fixes” everything around us. When he’s been on a two-week break home from school, this behavior is even more apparent. We live in the house, use things, move stuff around, and he follows behind us putting everything back in place and keeping things in order the way that he likes them. Read More