Going to School?

Javan has been home for eight days now. Most of those days I’ve wondered, “Is this the day I’ll have to put him back in the hospital?” Which is quite a thing to wonder when you’ve been clearly informed by said hospital that they can’t help your child. Still, it’s the only place we have at our disposal at present  that can keep us all safe in the worst case scenario. This week, I’ve had a shovel swung at my face, I’ve heard my animals cry from being stomped or kicked, I’ve smelled gasoline that had been poured out in the carport, I’ve watched him beat our car with a lawn chair, I’ve inspected new holes in his already crater-filled bedroom walls, I’ve had my eye “tickled” with a fork, and I’ve seen my child brandish a chef knife at me, though from a distance and only to get a fear response that he was disappointed not to receive. He is able to manipulate the child-proof lock on the sharps cupboard, which is how he accessed the knife. We’ve purchased new cupboard handles and a padlock to replace the current lock, but haven’t put it all together yet.

This week I’ve also enjoyed the bliss of plentiful cuddles, felt the sunshine warm on my back as we’ve gone on numerous neighborhood walks together, reveled in the beautiful sound of my child’s laughter, played with toy cars and dragons until my tooshie fell asleep, and sung bedtime lullabies as I watched his eyes close peacefully to sleep. I’ve seen his very best qualities watching him interact with his favorite cousins who visited from out of state. His cousins have this magical ability to bring out his loving kindness and joy.

Are you feeling emotionally confused yet? Me too. We’re being forced to consider really difficult options. Making decisions is never easy for me, but with stakes this high and variables this uncertain, I am definitely feeling even more overwhelmed than usual. It’s obvious that our current circumstances are serving no one well. For now, long-term hospitalization is not a good option for us due to insurance limitations and the fact that most of them can’t help children without autonomous self-care skills anyway. The only other options I know of at this point are to seek help from the school district or put him in a group home.  There is one place that’s semi-local that may provide government subsidized ABA (applied behavioral analysis) therapy,  which no major insurance companies cover and is incredibly expensive, so I’m still researching that option. And of course insurance isn’t set up to cover a group home and I don’t even want to know how much that costs per year. During my earlier attempts to get him placed in a long-term psychiatric hospital, I was informed by intake staff that many of their residential placements are funded by school districts who are legally required to provide a free and appropriate education and are unable to do so for those particular students in any other way. So it seemed like contacting the school district was the logical next step.

This is the same school district that Javan went to for pre-K. That was one long and terrible nightmare. At that time, the staff and administration did not want to admit that Javan’s disabilities were real and we had to fight tooth and nail to get them to provide the smallest accommodation. Because of his communication difficulties, it was some time before he was able to tell us that due to his separation anxiety leaving me in the mornings  (i.e. needing the be dragged kicking and screaming down the hallway by two adults), his breakfast and snacks were being withheld and he was being forced to run laps as punishment in P.E., which didn’t happen until later in the day. Those accusations were confirmed by the teacher and P.E. teacher, who was never even informed that he had Asperger’s, nor was she even familiar with what that is. Unacceptable. So that explains a little bit about why I feel so uncomfortable and hesitant to involve the school district.

So far, establishing this current, tentative relationship with the school has felt different and much better. It could be that we are dealing with different people at a different campus, or as the special education coordinator told me it could just be that they have learned so much more about autism in the last five years and have a totally different approach to helping those students succeed. I began by emailing her, explaining our situation, and inquiring about any behavioral programs they have in place. I had hoped that they would have a permanent behavioral unit, as I know of at least two nearby districts that do. But, being a very small rural district, they don’t. What they do have is a temporary “Redirect and Refocus room,” or R&R room. At first, I kind of laughed at that, thinking it was just a pull-out room for troubled or delayed general education kiddos, but after reading over the literature they provided me it actually sounds pretty good. It’s kind of like a reverse pull-out room. He would start out being in the R&R room full-time and then hopefully as he gained social skills and anger management skills he could begin being included in certain general education classes for short amounts of time with a supervisor. Stuff like lunch, P.E., science, maybe even field trips eventually. Now, they probably expect more/quicker progress than we do. They expect that this will be a temporary need for students and not a permanent solution. But I suspect they’re probably wrong in this case. If I put Javan in school, this room is probably where he will always need to be.

Here are some snippets from the R&R literature. Emphasis and parentheses are mine:

“The R&R is a self-contained instructional setting, not a disciplinary program, taught by a special education teacher and overseen by a licenced specialist in school psychology.”

“The program focuses a significant amount of time and attention to activities that encourage positive social skills and personal behavior management skills. Although behavior is the main focus, academic instruction on TEKS or IEP goals continues as appropriate for each student.”

“The following criteria is required for participation in out classes:

  • Student demonstrates zero physical aggression  (There’s the part that makes me say he won’t be able to leave this room.)
  • Student generalizes improving social skills from the R&R class to other settings”

Harm to self or others may require police (so much discomfort here) or Crisis Team intervention. If restraint is necessary, the ‘Written Documentation of Restraint” form will be completed, parent will be notified by phone. (Yeah. It’s probably going to be necessary.)”

“The specific academic coursework and grading process is individualized per student.”

“Detailed daily behavior reports are provided to parents.”

So, besides the police involvement, which is absolutely terrifying for me (the campus policewoman carries handcuffs and a stungun), it all sounds kind of dreamily wonderful, right? I was really super impressed with their staff as well, both on my longish phone call with the special education coordinator and school psychologist, and with actually meeting them today during our school tour. My husband’s mom, Javan’s Weebo, was able to meet us at the school so she could take Javan if (read: when) he needed to leave so we could stay and talk about serious grown up stuff. As we moved throughout the building,  more and more professionals kept joining our group. I don’t know if that was planned or if they were just interested. We ended up with not only the special education coordinator and school psychologist,  but also with the R&R teacher, diagnostician, and principal. They were all super friendly and supportive and, to my surprise, didn’t seem judgmental of me for homeschooling. I seriously expected they’d be condescending about him being so far below grade level on academics, but they were actually really understanding. When I told them he was on a kindergarten reading level, instead if the shock and awe response and tisk tisking I’d expected, I got a “Yeah, that sounds about right.”

Javan was very unfriendly during our visit. He hissed and growled and swung at people, threw himself to the floor, and kept trying to run off and get in our car. When asked about his diagnoses, I started with telling them we had an autism disgnosis. The special ed coordinator exclaimed, “Well, I can’t imagine why! It’s not like he has all the classic signs or anything!” I was like, “Thank you! Because people think if he’s having a good day (or the ten minutes they see of it anyway) or since he has an astounding vocabulary they can tell me he doesn’t have autism!”

We started with a visit to the sensory room. It was pure heaven for a kid like Javan. There were multiple tricycles, some with hand pedals, some with foot pedals, a rocking chair, a mini-trampoline with huge bean bag “landing pads” nearby for deep pressure input, big body bouncing balls, balls to throw and kick. It was fabulous. And it was hard to get him to leave that room.

We then visited the R&R room while the other three students were away and the teacher showed us around. There was one larger table for group instruction, three very well divided private areas for independent work, and a cool-down space with books, a bean bag, and a colorful padded wall for crashing into. My husband and I couldn’t help emitting knowing giggles at the large holes in the bookshelf backing. These are Javan’s people.

Or are they? The ladies all expressed concern for Javan because he’s obviously an easy target and these other three boys will do whatever they can to get under his skin. They assured me that he would also be bringing home lots of colorful new vocabulary words, an issue I find dismaying as I’ve so far been able to limit his curse words to “stupid” and “idiot.” They told me these other boys aren’t like Javan. They’re really tough. Their issues are purely behavioral,  not neurological or psychological like Javan’s. Javan is really very innocent, naive, and immature. He watches preschool shows like Peter Rabbit and Winnie the Pooh. “Age appropriate” media is often too scary or violent for him. I’m really worried about the ways these boys will influence him. And how they’ll tear him down just for being who he is. It’s important to me that you realize I’m not judging those other boys or their parents. I am the last person to be in a position to judge. I just want to protect my son.

It sounded to me like none of these ladies felt like Javan could actually make progress in the R&R room because they didn’t think he’d be able to learn self-control due to illogical and disconnected thinking. So I asked them what’s next? What comes after the R&R room if he can’t be successful there? They said that the R&R room is their most restrictive environment, and after that would probably come a day program (if we can find something in the area. Possibly the afore mentioned ABA program) or a residential facility like a group home or psychiatric hospital. I asked if, since none of them felt he would thrive in the R&R room, we could just skip that step and move on to a day program, that way we could miss the negative influence of the other boys (not that there might not be more like them in the other programs). They said probably not. We’d probably need to try it and see before the district could justify paying for outside placement. I can understand that. But they weren’t totally closed to the idea either and agreed to delay that discussion until after he’s undergone all their special education assessments. There will be an autism assessment, cognitive and IQ assessment, and I don’t know what else. They are planning to break it all up into small chunks over many days because he won’t be able to handle it all at once.

Then they also said that if we do enroll him there, they’d work with us to form a transition plan where when he first starts he’ll only be there for a very short time each day and increase the length as we go. They may even just work up to a shortened school day and stay there. Some kids just can’t do all day. I had no idea they could/would be that flexible. So I see a lot of positive things and potential here. I felt like they really do want what’s best for every child. For my child. Do I think they can provide that? I don’t know yet. I know I want to go through with the evaluations and assessments, because those might help me even if I do continue to homeschool. And after that? Well. We’ll see.

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