Saturday, March 26, 2016

Back to Square One

It's almost midnight, but Andy peeks into my door.
"Whatcha need, Buddy?" I try to keep my voice low; Allan is already asleep.
"I woke up. Can I have a song to go back to sleep?"

He had a long, hard day, with a lot of think about.

This morning we started our search for a new school for Joey. We finally got him settled and feeling safe at his school, the one where Joey's safety has been paramount. The one set up with him specifically in mind. The one where he was finally in the groove and getting things done.

The one we were told he would never have to leave? Oops, they aren't going to do high school. They are going to stick to K-8. Sucks to be us.

It's like people are new here. Or to autism. Or to Joey. The point was to limit the changes, the transitions. To figure out his needs and get those met effectively. To get him settled so he could focus on important stuff- like reading. Or history. Or math.

But here we are, and we saw our first option today. There aren't many.

What we need is a school that can provide the intensive sensory integration and regulation he needs, be a safe space, and accommodate his intellect, all at the same time. He needs 1:1 academic instruction, an array of testing accommodations, and a number of classroom accommodations, including readily available space for recovery and regulation breaks. He needs academic challenges in math and science, and extra support with language-heavy tasks such as writing and responding to questions (history is a definite issue). He needs faculty that can deal with communication difficulties and learn to "speak Joey" while he learns to communicate effectively. He needs all this is a low-stress and flexible environment because of severe anxiety.*

We took Andy with us, because one thing we definitely need is a kid point-of-view, and we can't introduce Joey into a bunch of strange places. We need to have a plan and a strategy before we take Joey to a place he may assume is where he is destined to go. Yet that kid-view is key; kids know when things are uncomfortable or not-good in ways adults no longer think about or understand. On the other hand, it must be a bit surreal for Andy, to be basically acting as a big brother for his big brother, and scoping out these strange environments. After all, Andy has his own issues with schools, settings, and anxiety.

Option 1 is a beautiful school. There is no doubt that it is designed to do what it does, and that is what it does. The walls are full of student art, and the projects are wonderful. The students have a beautiful, professional kitchen, where they learn to prepare their lunches- and we are talking about pork roast and gourmet cupcakes, food for about 60 (students and staff). Kids with more difficulty have cooking lessons after lunch, so that they can have basic independence skills. A big, beautiful classroom for life skills, with a variety of task areas, to meet a range of abilities and needs. A science classroom with live animals, including frogs, fish, and (to the delight of Andy) a hamster. A wonderfully clean and organized shop for working on bicycles and small motors. A well-organized vocational program where the older students go out into the community to learn jobs, from stocking shelves at the Goodwill to helping at local restaurants and small businesses. There is a piano in the cafeteria, which is more like a nice room for eating than a typical school cafeteria. They use positive reinforcement charts and paychecks and motivators. They have whiteboards installed, labs with sinks ready, and plenty of counsellors with office all along the length of the building. The teachers are friendly and seemed glad to see us. Everything was very clean. It is a beautiful school.

And we walked out, knowing Joey could not manage it. They change classes four times a day, with a very loud bell between periods, which are 90 minutes long. They have break rooms, but only one is being set up as a sensory break area (as an experiment) and all are locked, so he would have to wait for a key to access them. When we asked about math, they proudly told us they once had a kid who got all the way through Algebra II... some time ago. That would be the end of a normal math curriculum for a high school.** Red flag: bragging that ONE of your students, once upon a time, actually managed to complete a normal course of math? Not a good sign. But with the usual assurances that "they would teach what he needs," we got little else clear about the academics. No music, except as a once-a-month "club." The strict structure, the changing rooms, the long hall and wide spaces, and what space was there for 1:1 instruction? The 4-to-a-class seems great until the teacher talk about their 6-person classes, and no clear space for smaller-ratio needs. We didn't see any classroom aides, which limits flexibility. There were metal detectors and a person at the front student door, but their policy for bolting was to catch up and walk with them. No speech or occupational therapists on staff. We were told straight out and early on, they don't have students with intensive OT needs, so no OT, no gym, no sensory space.

It was a beautiful school. It was the kind of school I hope Joey could navigate, with all the trappings of a regular environment, but a lower ratio so that students could get more attention and support.

But that is not where we are. And without that sensory integration piece, no way to get there.

Andy asked questions. He giggled at the hamster. He had his eyes open. He noticed many of the lockers had no locks, and know Joey's fascination with locks, so he asked about that as an issue very early in the tour. He took a good look at the fancy kitchen. He shook hands with teachers (many of whom likely assumed he was the prospective student). If the academics were more clearly solid, it would be a good school for him. But he isn't the prospective student, he's the brother. He checked out the labs, noted the cameras (the whole building is camera-monitored, but no one was actually monitoring), looked around the classrooms. He liked the school. Thumbs-up from the kid perspective.

But he had to see our smiles vanish as soon as we were in the car and heading home. The looks between us as we realized, yes, it is a beautiful school. Had he stayed on the course he was on when he came out of second grade, we would have totally been here.

Sadly, that is not what happened.

It is a beautiful school. Joey just can't do this now. And there is something in my heart that just screamed when I realized there was no way he could do this by the fall. These are kids destined for the kinds of jobs and lives that may keep them independent (or at least marginally so), for living on their own or with minimal supports, and Joey can't join them. He can't do this. Too much stress, too much noise, and not enough brainwork, not enough sensory interventions.

There is nothing more heartbreaking than knowing this isn't where you are going. I can only blunt the pain by adding, "not yet."

I pick my best songs, and sing to Andy as he turns and tried to settle. He was the one who added the words, as we waited for Joey to come home from school, sitting on the porch. "He'd like it mom. Just... not yet."

*Yeah, you might see the problem here. Despite a wide need for such an educational environment, most schools seem more interested in dealing with academically and intellectually challenged kids, and shoving them into dead-end or highly limited employment options. Where are the options for kids with solid academics or academic talents, who still need support to manage the environment and learn coping and regulation skills? And don't tell me there aren't many- shoving a kid into "mainstream" isn't always the best option for everybody, especially if they end up being written up a lot, or spend their lives creating stomach ulcers and just trying to navigate their day. Anxiety is often ignored, ridiculed, and dismissed.

**In our system, the usual course is algebra I, geometry, algebra II, trigonometry, calculus AP. Most kids stopped after algebra II, or you had "college-bound" kids who took algebra I in eighth grade, so they would go through trig and possibly the calc AP. If you were a total math nerd like me, the school folks freaked and didn't know what to do with the college credits you took to continue your math in your senior year.