Raising children with neurological disorders and realizing, after all these years, that I've only been "passing for normal"
Thursday, May 18, 2017
Waiting for the Other Shoe to Explode, or I Hate Change, Part 5
(I just did a Google search for an image of an exploding shoe and mostly what I got was shoes made with the pattern of the exploding TARDIS from Doctor Who. As a Whovian, I find this amusing.)
So, in our house, long ago, we stopped using the phrase "waiting for the other shoe to drop" and replaced it with "waiting for the other shoe to explode." This amused our case managers while puzzling other people who didn't live in the special needs bubble, but we felt it was an apt description. This was because that for many years, we had to be prepared for at least one of the children to suddenly "melt down." Meltdowns are painful and take hours to withstand and recover from, unless it's bedtime and you can just put them to bed and let them cry themselves to sleep. I remember when Miranda was about 3 (she must have been at least three because when she was 2 she called me Daddy and didn't learn the word Mommy until one day when Alex taught it to her in the backyard, where they could alternate yelling at me at the top of their lungs), she hated to go to bed and would scream for me as she fell asleep, at least once a week. Even if I lost my nerve and went in to her, she didn't actually want me. She just wanted to cry and scream my name as she fell asleep. I think this was when I started watching baseball in the evenings. If I turned the game up loud enough, I couldn't hear her at the other end of the house and the patter of the commentators was very calming. It didn't hurt that the Phillies were decent back then. Before the dark times. Before the Empire.
Anyway, meltdowns. Meltdowns are different from tantrums. A child (or an adult) throws a tantrum when they do not get their way, hoping that by making a large fuss they will get their way, and, when they do, they calm down instantly. A meltdown is when a special needs child overloads, not unlike a nuclear reactor, hence to borrowing of the term. We say they "fall apart" and cannot easily be "put back together." They can experience a sensory overload (too much noise, too many people, too dark, too light, etc) or a behavior overload (too many new things, too many questions asked, too many tasks assigned). We learned quickly with Alex that when we were planning to change something or go somewhere, he needed to know 20 minutes ahead of time, and then 15 minutes, and then ten, etc. Then he was expecting the change and we had a better chance of a smooth transition. When he started school, we needed to get ready in the same manner every morning, at the same time, and do everything in the same order. That was true at 3 and is still true at 13, although it's earlier, dammit. My alarm goes off at 6:10 because he needs nearly an hour to wander through his morning routine. He will not be rushed, and his school is now 45 minutes away and I'm not going to drive him all the way to Atco so he better be ready when the bus arrives anytime after 7:08 am. Ugh.
We have done the same with Miranda because, well, Alex trained us, and it was easier. What's interesting about the two of them is that Alex is a morning person. He wakes up cheerful and happy every morning, while Miranda, like the rest of us, moans and struggles to get out of bed and eats breakfast silently. I can't wait for her to move to the Intermediate school next year, where the start time is half an hour earlier, so her bus will be at least half an hour earlier, so they will probably get ready and leave at the same time. Boy, that's going to be fun.
The reason it's going to be so fun for me (not) is that their grooves are my grooves. I do everything the same way on school mornings because I can do it without thinking (I am not a caffeine first kind of person; my stomach won't tolerate it) and this way, everything gets done. I shove them out the door and get on with my day. And as I get older, I'm having harder times shifting my grooves. When next September comes, I will probably have to write out the new morning schedule with all of their activities intertwined so that nothing gets dropped and no one goes to school without their mood stabilizer. That would be ugly.
I had lunch with a friend today and when I talked about schedules and habits, she reminded me that we humans like schedules and habits because they do not require extra effort. We can go through the motions, literally, and still get the job done. But as I pondered this, I remembered the primary reason we got stuck in our grooves: if the child knows what's coming next and what's expected of them, the statistical chance for a meltdown decreases significantly. I spend so much of my time explaining to my children what comes next. "Remember, tomorrow Grandpa will be here when you get off the bus because I will be out with Grandma." "Remember, tomorrow is a half day at school so you will come home at lunch time." "Remember, we have to leave in ten minutes to take Miranda to choir." "Remember, you have to wear your school shirt tomorrow for the field trip." "Remember, in July, Mommy and Daddy are going away and Grandma and Grandpa will be here to take care of you and everything will be fine." And these are just things I've said in the last couple of weeks.
We don't experience the awful meltdowns of their younger years anymore. Miranda just flounces off to her room to calm down and Alex is able to explain now why he is upset and cry a little, but not explode. I remember when she was two, we had to wrap her up in her blankets and sit with our legs over her body to hold her still while she screamed until she calmed down (or was too tired to cry anymore) because nothing else would help. But she was easy, compared to him.
The staff in Alex's classes have always been trained how to put him in a therapeutic hold. It's kinda like a human straight jacket. Every year, at the annual IEP meeting, we sign the permission slip for them to continue to do this as needed, no questions asked. THE reason this school year has gone so well is not measured in his academic prowess or expanding musical talent, but in the amount of time since he's been put in a hold. It's been so long, I can't actually remember when the last one was. That has never happened before, in his entire academic career, which started in September, 2006.
The good thing is, Alex is not a self-injurer. You don't have to protect him from hurting himself. The bad thing is, you have to protect yourself and everyone else in the room. I don't think he's every had a teacher he didn't bite. I am not one of those parents worried about my kid being protected from a bully. I am the parent of the bully and I take it personally when he injures his teachers and aides. I joke that he may be the smallest in the class, but he's the meanest, but it's true. He can be effortlessly vicious.
I think his teachers in third and fourth grade stopped telling me about his bad days because of how badly I took the news. It would absolutely ruin my whole day. I started getting anxious at 2 pm because that's when I would get an email or a text about his behavior for the day. Strangely, it never worried them, which tells you just how often special education teachers get punched and bitten and worse. That's terrifying in and of itself. But as the parent, I felt responsible and I felt guilty, even when I knew, logically, that there was nothing I could do about it.
Eventually, in December of sixth grade, the district recommended a transfer to an all special needs school, which, again, felt like a failure on our part. But Archway has been a revelation and a haven and they are particularly suited to teach Alex how to cope when he wants to melt down, which is what they have done. No holds needed in recent memory. This is how I know God is good.
Posted by Sarah Boyle Webber at 7:08 PM
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