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Hidden Disability No Longer

July 16, 2011

making the invisible visible this fall

The past 48 hours at our house have been crazy. After two weeks and twenty techniques, we’ve given up (for now) the idea that we can teach Hope to swallow a small pill whole. So no time-released meds for her until her mouth gets over the sensory compulsion to crunch things. Her doctor revised the plan to a med that can be chewed. Unfortunately, he did this over the phone and I am still too naive about ADHD medication to have asked for information his nurse did not volunteer.

I’ll just summarize: nobody at our house this weekend would wonder why Hope has these diagnoses. There’s nothing hidden here. Every bit of it is ‘out there’ while her body adjusts to this new medication –or until we decide we can’t take it any more and stop.

But it is not always so. Either she will adjust or we will quit and by the time Sunday School starts in two months she will revert to being (in class at least) the sweet, if easily distractable, little girl who listens best in a teacher’s lap or if she has something she can fiddle in her hands (which will keep her from fiddling with more distracting things like her shoes).

Here’s the thing. She’s only in first grade and far from the only one to want a lap or to need to flick her shoes to make sparkles. It took much of last year for her to relax enough in Sunday School to start leaking her beneath-the-surface self.

Here’s another (wonderful) thing: God has seen fit to bring many families who have kids with disabilities  to our church and even when she’s having a hard morning, Hope is not the one who most obviously has special needs.

Those things make Hope’s issues stealthy and other people’s expectations too high. Most people have no idea how hard she works to hold it together until she falls apart. Which she does quite regularly in private. She just gets the rage out of the way on the drive to church or saves the meltdown until she gets home.

So I have spent the day drafting an ISSP. That’s an Individualized Sunday School Plan. With a few quick changes it will become an IHSCP –Individualized Home School Co-op Plan. My goals are simple: to make the invisible visible on paper and let the other teachers in her life help  support her in a way calculated to help her learn.

For example, her short-term memory deficit is invisible. Until now she has been able to pass for typical because there is no expectation that preschoolers or Kindergarteners can read or will memorize the books of the Bible. Hope can immediately parrot back information so it might be a while before any of us knows if this week’s Bible verse has made the greater-than-typical leap from short-term to long-term memory.

In fact we’re sailing uncharted waters together this fall because our chief goal for her ADHD  med is not to control her hyperactivity (which has mellowed with age) but to try to bridge the FASD short-term memory gap to help her learn to read. If I let the other adults in her life in on Hopes challenges and goals, there will be more of us praising God  when he sees fit to bring them to pass.

The ISSP will help get us all on the same page, literally.

And if it proactively prevents a few of those unintended zingers meant to encourage me to work a little harder on memorization (or whatever), I’ll be grateful. Maybe this fall we’ll be able to see more clearly that we are all instruments God is using to accomplish His purposes in this world. Even through disabilities like brain damage that are invisible to the eye until we sketch them in ink.

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