Posted in Kids, School

The Gaping Chasm

It’s IEP (Individual Education Plan) season again. An IEP, for those who don’t know, is a written-down-and-must-be-followed plan for a special-needs’ child. It tells about the child–their strengths and weaknesses. It tells where they need to improve. It makes plans for that improvement and the specific steps to follow for that planned improvement.

I just had Ethan’s 2 hour one last week and will have Laura’s much-shorter one this week. Because the kids will turn 14 within the next year they both will attend their IEP’s for the first time.

Each year I’m both filled with joy and awe AND a totally overwhelmed feeling. I see where these kids began; I see just how far they’ve come. I also don’t see the future. It’s this giant, gaping chasm of ignorance, lack of control and just plain old fear. Not so much with Laura, because intellectually she’s just fine. She will go to college. She will be able to support herself.

Ethan? Who the heck knows?

We made the decision to have his IQ tested. While the school psychologist will not be able to give us a number, she will give us a “he will qualify for ID services” or “he will not qualify for ID services” (ID being intellectually disabled).

It’s the same sword we played with all those years ago when we got the autism diagnosis. Ethan had all these quirky things–things that, to me, were disparate and didn’t fit together. The developmental pediatrician at duPont heard my list and said almost immediately that she thought he was on the spectrum. I was stunned. Somewhat horrified. But still, glad for the tentative diagnosis. All her tests were vision-based, so we went to the school psychologist and he confirmed with his testing that Ethan was autistic. High-functioning, but still, autistic.

So, fast forward some years and that’s where we are. The double-edged sword of a diagnosis. We don’t WANT him to qualify for ID services. We don’t WANT him to BE intellectually disabled. But if he IS, then we want what he would qualify for–services, support, help, planning, etc.

And the future continues to be a big, gaping, scary chasm of unknowing.