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Great Dismalness! (and a rather long update about the boy)

Guess who loves history? Me! I love history!

Guess who doesn't love history? My son.

From what I can tell, fourth grade is when they start teaching kids history in earnest. In an ongoing effort to reinforce the curriculum and make it more concrete to the kids, we drove last fall to the Great Dismal Swamp, which, in case you didn't know, was first explored by George Washington in the mid 1700's. Not counting all the other people who'd already explored it, of course. 

(I bet you thought I was going to say "make history come alive" instead of "reinforce the curriculum" didn't you? Well, I did not, because that expression is a punchable offense in my opinion. Shudder.)

We went back repeatedly over the year. The Great Dismal Swamp is not aptly named, as was stated by this boardwalk vandalism:

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It is golden in the autumn:

 

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And lush in the spring:

 

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Also, there is Lake Drummond, where you can fish, but we mostly just let our dog swim and use the looky-things.

 

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I'm sure the looky-thing has a proper name, but don't ruin it for me.

 

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See? History!

 

Also, here is a picture of Maria dabbing. I've been told it's what the young people are doing these days.

 

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Many of the trees in the swamp have openings in their trunks like you see above. I told Maria they were portals to other dimensions. She gave me the most wondrous look and then answered, "I think they may be where animals hibernate, Mom." Somehow I thought she'd be a little bit older before she starting treating me like I'm an idiot.

Anyway, after repeated visits, I believe the boy now definitely knows George Washington once was in the general vicinity of the Great Dismal Swamp, but that's about it. This was a continued theme as the school year went on. As I indicated in an earlier post, most of fourth grade went very poorly for the Tom formerly known as Kurt.

In retrospect, there were early signs it was going badly. By midyear, he seemed to be done. I don't know if it was that the work got to be so far over his head that he couldn't take it anymore, or if there was some other anxiety issue going on, or if it was a combination of both. But he started really acting up, like, violently. The school, bound by the student code of conduct despite his disability, and not having the resources or training to manage regular toddler style-meltdowns from a ten year old, started sending him home. Once he realized all he needed to go home was to act up, he decided to make it a regular occurrence. When the school would push back by refusing to suspend him for a relatively minor tantrum, he shrewdly escalated his behaviors and then they'd send him home. At this point I began to understand that our wonderful school which accommodated him for five years was able to do so because they had particular staff who had built a rapport with him, and because he had never experienced a rough patch quite like this in the past. 

I'm a nurse, so all my analogies are from health care. (Actually the school system and the health care system are analogous in that people agree they are foundational to society, but can't agree on the politics of funding them.) So, imagine if a hospital had enough staff and resources to take care of all their patients as long as their patients weren't too sick, but the hospital did not have any crash carts, did not train their nurses in how to do CPR, and the ICU was located in a separate building across town. What are the nurses supposed to do when they start to lose a patient? Google how to do CPR? Rig a defibrillator with some wires to an electrical socket? And what if in order get a patient to intensive care the nurses have to call a meeting of hospital administrators and beg for it?

Those are the scenarios that blew through my brain as we sat in meeting after meeting, as we were told the district couldn't possibly send him to the regional school for autism, as months (yes, months) went by and the boy missed nearly seven (yes, seven) total weeks of school. Some of that time, the school sent a great special ed tutor to work with him a few hours a week. Mostly, though, it was Jeff and me, using whatever we could to make a homeschool routine for him, and trying to get him out on field trips as much as possible. If we'd had a bit more time to prepare, to figure out a curriculum, and to establish some connections in the local special needs homeschool community, we might have been able to make this really happen, but we were somewhat held back by the fact that WE BOTH HAD OTHER JOBS. 

And while the district administrators sat with us in meetings, endlessly re-writing his IEP, asking, "Well, have we tried thiiis kind of schedule? Have we collected enough data on the meltdowns to make a plan? Have we tried giving him more breaks/incentives/visual cues/adaptive equipment?" Kurt-Tom continued to deteriorate. We had him evaluated by neurology just in case something was actually messing up his brain. We contacted the local behavioral health community board. We finally got him on the Medicaid waiver waiting list, which is years long. (He would move to the top if he needed to go to an institution, and I tried very hard to not think about that.) We got an advocate to come to the meetings with us, so she could say pushy, unpleasant things on our behalf, which she did.

We moved him into a smaller class at a different school that would theoretically be able to manage his behavior so he didn't have meltdowns, or at least, contain his behavior when he did have them. They suspended him midway through his SECOND day. He came home hoarse, bruised, and exhausted, with a black eye from throwing himself against the walls and doors. I made it clear we would not be sending him back. In fact, at the inevitable next meeting, I made it clear that, since I had LEFT MY JOB at that point, I was perfectly fine never sending him back to school ever again if this was how it was going to go.

 And then, at that very meeting, the district level administrator gave up and left the room with her phone. When she came back, she had the director of the regional school for autism on the phone. He started two weeks later. 

Before he started, I asked the director how bad it would have to get before she sent him home. She told me, "We won't send him home unless there's a medical emergency." So I said, "No. You don't understand. He will do horrible things to get sent home. He will push, pull, throw, bite, punch, pee, you name it." She looked me directly in the eye. "We may have to hold him. But when he gets violent, we will wait, he will calm down, and then we will move on with our day."

Reader (if you're still reading), she did not lie.

He's been there over a month now. He's…fine? Better than fine. Chatty, silly, calm. In fact, he had more or less settled down by the end of the first week. He likes it there. They like him. We had a great IEP meeting this week in which we cautiously planned new, awesome things for next year. 

From a special education perspective, this is not a happy ending. Inclusion is too important. Autistic students should not be isolated. I agree with that. I want that. But within the fairly ridiculous system in which we are currently operating, this was the best possible outcome, and I am weak with relief. All school districts are a bit different, and ours is small and conservative, and maybe there would have been a more inclusive outcome in a different city. I can't quite get over the callousness with which the district spent our time and money, even though, on an individual level, everyone's intentions seemed to be good. No one implied this was our fault. No one said, "Next time, don't have an autistic kid," or anything remotely like that, yet our sacrifices, most notably of my job, seemed to be taken for granted. 

This post is already too long. So, just to recap, we are currently doing much, much better, and we have a sweet, safe boy in a good place.

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5 thoughts on “Great Dismalness! (and a rather long update about the boy)”

  1. Poor Kurt, and you too. I feel for you. Hate to think of the lovely boy suffering this. Until the day when minds can be read to know what he is thinking it is all a guessing game. He has the best and caring parents in his corner. Good to know he is happier now. Hugs.xx

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  2. 😘 2018 has been brutal so far, when it comes to school. It’s tough to see you three go through this, but obviously, nothing compared to what you three are living through. Kurt/Tom is very fortunate to have two parents who put him first – before everything else.

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  3. I am sorry to hear all you have gone through, you are right he is a beautiful boy! I sure love you and jeff are your babies, thanks for the wonderful pictures. I say prayers everyday for your happiness.

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  4. I’m glad to hear Kurt/Tom is doing better. Hate to think of how everyone’s good intentions still result in such a difficult position for you and Jeff. I miss babysitting him and Maria – such sweet kids.

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