Back on the Road to Find a School

Jim and I met with our school district yesterday at an IEP meeting that the district had requested. The school district is of the opinion that Charlie needs to be educated in a placement other than in the public schools (he is currently in a self-contained autism classroom in our town's middle school). There are some private autism schools here in New Jersey that are possibilities (and I am actually visiting one this very morning), but these schools are very small and, when we mention them as placements that we would like to inquire about for Charlie, the response is usually statements such as:

"getting into X school is harder than getting into Harvard"
"Charlie will never get in because they only take 3 to 4 year olds and he is too old"

Not exactly encouraging.

To return to the IEP meeting (whose overall tone was on a similar note, as you may imagine). The private schools, including the one I am visiting and another I will visit tomorrow, have a one-to-one ratio of teachers/therapists to students, as is the case in Charlie's current program. Noting how difficult it is to get a spot at one of these schools, the district has mentioned some other placements, including a center that is quite large; earlier this year, they had also mentioned this residential placement. We have had many questions about these places concerning the training and supervision of the staff, the staff-to-child ratio, and the staff turnover rate. Suffice it to say that we have found answers to our questions, and that these answers have only served to make us raise our eyebrows more and to dig our heels in deep.

Prior to the meeting (which was originally scheduled in late June and cancelled and rescheduled by the district), I had requested to see Charlie's records under FERPA (the Family Educational Rights and Privacy Act). This review made it clear that evaluations (neuropsychological, speech/language, OT) had not been done for Charlie in more than three years. Under IDEA, students with disabilities are to be evaluated at least every three years, and such evaluations are necessary to determine placement. What, therefore, was the district basing a change in Charlie's placement on?

All this, combined with the district talking about other placements, adds up to a situation that is in-ter-est-ing, to say the least and more than familiar to Jim and me.

We have been on a search for a school for Charlie before, in 2005, when he was in a public school program in another town in New Jersey. We homeschooled Charlie for a brief period as his classroom was not appropriate, and then he was admitted at a small private autism school. He did well there, but the school closed in June of 2006 and, on finding that another town---the one where we now live---has an in-district autism program that had, on paper, what Charlie needed, we moved in with my in-laws (they had been residents of this town for over 30 years). We hoped---one always hopes---that this might be our final move, as there have been many in Charlie's young life: He was born in St. Louis, diagnosed with autism in St. Paul, and we moved back to Jim's native New Jersey in 2001 so Charlie could get the education he needed. Since being in our current town, Charlie has been in three different schools, with three different teachers, for the past three years.

And now it seems that we are on yet another stage of our odyssey to find a school, a place, for Charlie.

We are on a road already well-traveled. So now we are getting ready to go knocking on the doors of schools and asking about a place for Charlie, and knowing that the answer, as noted above, may very well be---will very well be---"We're sorry, no room here: Charlie is too old." It's not just that people think of autism as something only children have, and that people overlook the fact that autistic adults are adults, not "large children." Autistic children like my son who is all of 12 years old---not even a teenager---are too often written off as "too old" by the time they're, well, 3 or 4 years old.

It's very easy to become bitter, angry, enraged, and launch into full warrior mom mode (how dare they!!?!?!!!; etc.). But what this latest situation (roadblock) on the search for the best education for Charlie has been making us think mostly about is:

Never, ever give up. Never give up on a child, on any individual, regardless of diagnosis or age.

And:

What can communities do to fully embrace all of their members so that no one, no one, gets written off?

What can we do so that the message is not "he's out"?

What can we do differently to make things work for a student like Charlie?

What can we change about we're doing, about ourselves?

What is not being done in our schools and our communities that students are sent out---warehoused even---that a school district gives up on one its own?

Still such a long way to go with IDEA.

One thing for sure as we step back on the road again. While once Jim and I had to hold Charlie's hands tightly to help him keep pace with us, now he (he is a 12-year-old boy, puh-leez) shakes off our hands and clomps along beside us and, too, behind us.

And, too, ahead of us, leading our tight team of three over the rocks and very careful around the ditches, the puddles and the mud.