Monday, January 13, 2014

Questions and Evaluations

I feel as if I can't complain. There are numbers of people I know who have had far greater issues with their public school system, as far as it relates to their child with special needs.

So I won't say I'm complaining. It's more like I'm conflicted. And maybe a little confused.

Here we are, and while it seems hard to fathom, the time to plan out next year for Ethan isn't far on the horizon. At December's parent/teacher conference with the special ed. teachers, they reiterated what I'd started to hear at his last IEP meeting -- that it may be time to look at whether or not Ethan is going to leave special education and go onto a 504 plan instead.

I won't go into too much detail about how it's taken three months now to get this year's revised IEP to sign off on. Apparently the special ed. department in our town is in disarray. The person in charge actually got dismissed for some kind of mismanagement of funds (sigh...). The point is, after several phone calls and a few pointed discussions with people in the main office, I'm finally getting the paperwork. And while we had discussed at Ethan's planning meeting three months ago to NOT move ahead with his tri-annual testing required by law (unless the parent declines), as I thought more about what's looming on the horizon, and began talking to the people running the department, I realized that actually, testing right now is probably a good thing.

In the words of "C." on the phone the other day, "it's all about the data."

Of course. This makes sense. How can we (in the words of the principal in October) question why Ethan is receiving special education services, yet in almost the same breath dismiss the importance of comprehensive testing to see just where he stands? This doesn't make sense, and aside from the fact that it took me several months to realize, I can't get why the professionals in the room didn't offer that up.

But there's no need to dwell on that. The point is: the school is considering dismissing Ethan from special ed. Before they do, we need to make sure this is a wise decision. Obviously, testing will help confirm or dispute that. And so, over the next few months, we're pulling out the big guns. He'll be tested in school and by his developmental pediatrician. And while no one is saying he is going to lose his diagnosis, I am curious as to just what these tests will show.

Here's the thing: I am one of those people who likes to take into account a variety of opinions before making a decision. And when it comes to keeping Ethan in special ed. vs. a 504 plan, I hear many different voices.

I hear the voice of the school staff, saying he'll "be just fine;" he learns quickly; he doesn't need a specialized plan any longer, just some accommodations.

I hear the voice of friends who have older children in special education, their quiet voices of caution that we don't give up too much, too soon, only to find ourselves in a bind later when Ethan runs into new challenges with fewer services at his disposal.

I hear the voice of the developmental pediatrician, always one to downplay the school's enthusiasm, to acknowledge that yes, my son is doing very well, but yes, my son still has a diagnosis and needs more than perhaps the schools want to sometimes give.

And I hear the voice of my mom, one who tries to understand but sees Ethan through the lens of experience with a very different kind of autism, my brother's. When I talk with her, I hear the regrets of living in a different time, with schools that didn't even have an IEP for Andy until he was 7 years old; that let him play in the sink half the day in preschool because it "made him happy;" that claimed his autism "wasn't that serious" so they could deny services, although he tried to bite the people performing his evaluation, and they had to bar the doors to prevent him from bolting. To my mom, I know my concerns are almost superfluous, frivolous. To her, Ethan is a regular kid with a few quirks.

When I talk with her, I began to feel guilt seeping in. I wonder why I would fight for services if it means possibly taking resources away from a child who really needs it?

I wonder, seriously wonder, what, if anything, we should be fighting for. Ethan doesn't seem to need a paraprofessional right now. He doesn't currently need modifications to his schoolwork. He is wrapping up his time in OT. He doesn't have behavioral issues that disrupt the classroom or his learning. He just has some social challenges. I wonder how much, aside from a social skills group, the school is required to help him "get along" with others socially. I wonder if, 30 years ago, Ethan would have just been considered one of those quirky types that doesn't quite fit in.

I wonder if we are living two sides of the coin here: that we've wonderfully reached a point where Ethan no longer needs supports, yet worriedly reached a point where Ethan no longer needs supports, because there isn't much more we can do to help him along with his social challenges. I don't want to change him. But it pains me to think that we may come to a time where he will either have to realize through ridicule or rejection that he needs to change himself in order to get along with other people...or he will remain blissfully unaware, and the fact that he is unaware will hurt only those who love him, while keeping him in own protected little world, happy but alone.

And I wonder if it's possible to argue for services that we might need, in a future we can't see yet. Those at the school like to chide me for thinking of what ifs and making plans just in case. And maybe I do need to be more of an optimist. But at the same time, as a parent, isn't that my job? Don't I need to try to peer down the road and think about possible pitfalls as Ethan heads towards adolescence and beyond? If his parents don't, then who really will?

So, it's a time of questions. I'm tremendously thankful for the way the school year has gone. I really like Ethan's teacher. I can see he's learning in leaps and bounds, and in the social areas, he is growing in smaller leaps and bounds. I just can see that we are straddling this very interesting world between the typical and the not. From our little tightrope we get quite a good view of both worlds...yet don't quite fit into either one of them.

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