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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Room to Grow

As my son follows me around the kitchen, immediately fixing items that I move out of place, and as he monitors and resets all of our other shared spaces after we use them, I daydream about the new house we are planning. I am hoping this move, which will give our son more space and more control over that space, will calm his nerves. And mine.

My son’s new “apartment,” which will be connected to our house, will be a pretty sweet set-up. In a lot of ways, I’ve thought more about his house than ours, so it’s possible my husband and I will be living in a cardboard box next to our son’s home, I don’t know.

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A Sweet Treat

We were shocked by how fast he moved. 

As soon as he leapt off the couch, we knew exactly what he was doing. 

Really, we shouldn’t have been surprised. But my husband and I have these little moments every once in awhile, when we look at each other and go, “OK, yep, he gets it.”

This is what I mean by “strong receptive language.” It’s just hard to accurately describe the nuances of that on an intake form.

Sure, this young man has trouble with complex verbal instructions and sometimes has difficulty completing tasks that make no sense to him. 

But given the right motivation and goals that are meaningful to him, and he gets it.

So much more than anyone gives him credit for.

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Earlier in the day, I had taken him to a local bakery to pick up some cupcakes for a birthday dessert for myself :). He picked out a cookie for helping out, but he had to wait until after dinner for the cupcakes.  Read More

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