Stripping Down and Starting Over

It's been more than a year since I posted on Ben's blog. We've been doing fine. There hasn't been much to report. Once you get into a rhythm, you just stick with it, and that's where we've been for the last year or so. During the school year, it looks exactly (and I mean, exactly) like this: I get Ben up, he takes a shower, puts on all clothing except pants and shoes, drinks a Strawberry Instant Breakfast and takes his medication, watches t.v. for 1/2 hour, puts on his pants and shoes, slings his book bag over his shoulder, and off he goes to school. Even dropping him off includes certain procedures and rituals of stopping, saying routine words, and waving at just the right moment.  After school, every day has its own routine, too, but there is a routine. And so long as we stick to it, life is pretty normal.

But things are changing now.  For starters, we are a month away from finishing elementary school, and figuring out where Ben will go to Junior High.  The very term "Junior High" churns my stomach. For "normal" children..."neuro-typical" children...Junior High is essentially just a cesspool of raging hormones, social turmoil, and interpersonal drama. Throw in a kid with autism, and while there will be some children who stick up for him, there will be plenty of others who, because of their own limited and seriously lacking self-identify and self-esteem, will see him as easy prey. I have no doubt that he will be bullied and mocked. And I know how Ben handles being bullied and mocked: It typically involves swear words, physical retaliation, and once home, an immediate emotional meltdown accompanied by a strip down to nakedness so that he can climb into bed under his autism blanket and spend the rest of the day with his headphones on watching something on his iPod.  Granted, this coping strategy is considerably better than emptying all his drawers onto his floor, shattering dishes, and spitting and punching me or anyone else who comes into the room to intervene...I am counting my blessings for the improvements he's made in that regard.  But that would still be a pretty hard way to spend the next three years.

In light of that potential outcome, we are desperately trying to get Ben into a private school next year called "American Heritage Academy."  It's expensive, but a cost I will willingly pay if they will accept him.  Here are the caveats:  First, he has to demonstrate that he can function within the mainstream classrooms, because they don't offer resource or special education classes.  The teachers at the elementary school tell me that Ben is perfectly capable of succeeding--academically, at least--in mainstream environments. In fact, I got a phone call from the resource teacher just two days ago who said that she just completed Ben's final testing, and he tested "off the charts" in both math and writing--both areas where he had been working in the resource room on his IEP. She suggested that we talk about dropping his IEP as we move into Junior High and consider just giving Ben a 504 instead.  [For those of you don't know the difference, an IEP is a state-funded plan that provides for resources such as speech therapy, counseling, resource and special education help, etc., where a 504 includes no funding but allows a child to receive some accommodations such as extra time on tests, sitting closer to the teacher, and so forth. Both are technically "legally binding," though a 504 has very little "bite" when compared to an IEP. Children with certain diagnoses are given an IEP (including autism and other learning disabilities); children with other diagnoses (like ADD, for example) are usually only given a 504.]

Let me digress for a minute to explode about that suggestion.  ARE YOU KIDDING ME???  She wants to strip away the only safety net that we have for this autistic child--the only thing that gives us access to services that allow him to have small classes, to work with the psychologist, to get extra help--and move him to a 504 where he essentially will get NO services whatsoever, but could get a few little accommodations if he needed them?  The only reason he has finally begun to succeed after all these years is because of his IEP. Now, moving into the cesspool, she wants to yank that out from beneath him with a pat on the head and a "Good luck--go get 'em, Tiger!"? Look. I can understand that he doesn't need to be in resource for math and writing. Great. But he is still far below his peers socially and behaviorally. He still needs an IEP. He still needs access to other services (social skills support, small group environments, etc.), even if they aren't academic. I will fight all the way to the White House to hold onto his IEP as we move into Junior High if that is necessary.  What in the high holy heavens could she possibly be thinking?  Ok. End of rant. Deep breath.

At any rate, if we get into American Heritage, whether he has an IEP or a 504 becomes a moot point (since they don't offer special education anyway), except that if he has an IEP, there is state funding allocated for the IEP that we can access and apply to his tuition at American Heritage. It's not much...a pittance, really...but every bit helps, right?  Besides, it takes more than Valley View saying Ben could keep up in the mainstream classroom. He actually has to prove it by doing some testing and by demonstrating that he is academically qualified to perform at a 7th grade level.  So here's the big question: does the public school system version of 6th/7th grade readiness match what American Heritage is going to test him at and expect him to be at? I'm really anxious about that, especially since he does need a few accommodations still for handwriting (he has a diagnosed dysgraphia--handwriting disability) and math facts to keep up.  Testing is on May 8th. Fingers and toes crossed.

The bigger issue, and the one that really scares me, is that even if Ben passes the testing, American Heritage still has to decide that Ben is a "good fit" for the school. We filled out all kinds of paperwork, including a long series of paragraphs that Ben had to write himself, and Ben had to go in for an interview that I thought he did a good job with, except that...well...he has autism. So he talks with a unique affect, and he has unique tics that he does with his throat and his face. It's clear that he would be "different" from the kids there who don't have autism.  Will they discriminate against him because of his autism? Will they not want him because he's different? Will they feel like he is just too much work for their teachers, or that he might be too distracting for the other students? These aren't issues we've ever had to face before.

It's probably not the last time we'll have to face them, though. Ben will come up against these kinds of questions every time he applies for a job, or asks a girl out on a date when he gets older. So times are a-changing. As Ben gets older, some of the more real and long-term implications of having autism are becoming evident, and while we don't have to cross any bridges just yet, it's a little strange to see them begin to dot the horizon.  Ben isn't the only one who likes the routine. I like it, too. I don't want it to change.