Sunday, October 22, 2017

A Sideways View

"Some of the kids were bad in school today," Chloe reports as we drive home. This is a common theme. She's doing preschool in the mornings this year, in a mixed class of typical kids and those with special needs.

"What do you mean, bad?'" I ask her, knowing where this is going.

"Oh, they wouldn't stay in line, they kept rolling around on the floor during circle time, and one of them kept singing this song really quietly over and over," Chloe says. "She doesn't talk, she just sings."

"You remember what we talked about, right? And what your teacher says?" I remind her. "Some kids are working on learning different things. You're learning to trace your name. Some of them are learning to sit still in circle." We've had this conversation before. I'm sure it won't be the last time.

It's a little bit strange, having a child who is technically a "peer model" in a special ed. preschool classroom, after having a child who was in special ed. preschool for services.

When I remind Chloe the kids aren't "bad," they are just working on different things than she is and might need some extra help, I wonder what kids used to report about Ethan when he started preschool.

When she says she wants to go get "services" (OT, PT or speech) like some of the kids because that seems like it's really fun (and they appear to get special attention, I'm assuming), I remember how Anna couldn't understand why therapists spent so much time attending to Ethan (and he STILL didn't really enjoy playing some of their games).

When Chloe tells me the ones who don't talk are the "little kids" in the class (although they are all three and four-year-olds) I wonder the best way to delicately explain that's not really the case -- or should I?

One day Chloe walked by a little boy in the classroom when we first arrived.

"You could say hi to him..." I suggested.

"He doesn't talk," Chloe replied matter-of-factly.

"But you could still say hi," I protested.

I will ask her who she played with at recess. Ninety percent of the time, she names the typical kids only.

I can't help but remember the way Ethan avoided everyone at the beginning of preschool. Even compared to other kids on the spectrum, he seemed anti-social. In kindergarten he climbed the monkey bars again and again and again, alone. But he was perfectly happy.

Some days I watch Chloe come into the classroom trace her name pretty darned neatly. Occasionally I'll see parents of some of the special needs classmates who come in and scribble, or need the teacher to hold their hands, or fight with even sitting at the table, and I don't want them to see what Chloe is doing. I know it can feel discouraging. It's easier to have your child receive services at home, where it's safe; insulated. In school, with peers, suddenly the differences stand out much more starkly. It becomes hard sometimes to let your child develop on their own timeline rather than the standard one.

Some days when we're leaving at pick-up time we walk down the hall and Chloe is chattering constantly about her morning and pictures she painted and games she played, and there are times we walk near a mom and her daughter, from one of the other classes. This child rarely speaks but traces her fingers across the walls as she walks. Their silence feels heavy. It feels heavy to me because I know if I were her, I would be longing to have conversation with my child, like the one Chloe and I are having.

In these moments, I feel something like guilt.I want to tell this mom I'm not taking any of this for granted. And I know what it's like. I DO understand.

I was going to title this post something like "View from the Other Side," but I realized that wasn't true. I'm not on one side or the other. I've visited both. So now I stand sideways...always with the perspective of a typical child's mom, and a special need child's mom.

Interestingly, while I realize I now have more compassion for special needs families, I also need to not be guilty about my own child's abilities --  the same way I needed not to resent those typical kids who did (and sometimes do) surpass Ethan in their social abilities. They are who they are. It's not their fault. Why did I ever think any differently?

These differing perspectives have grown my empathy. They've also reminded me to not be so hard on myself.

So I stand here in the middle. And while sometimes the feeling is unsettling, I am grateful for the view.

Wednesday, October 4, 2017

Ethan vs....the Dryer?

Years ago Dan and I used to watch a show called "Obsessed" about people who struggled with obsessive compulsive disorder. The show fascinated me. Here were people whose lives had been literally taken over by what would seem almost nonsensical to an outside observer. There was the woman who had to check that the stove was off. All the time. The other woman who had to brush and floss her teeth countless times throughout the day or she literally started to break down. And most memorably - the man who HAD to continually rub his hands together to "wipe off the evil" if he happened to spot an El Camino (that old car/pick-up truck-looking hybrid) drive by. He was in tears, trembling, when the therapist wouldn't let him. He thought he'd be cursed.

The whole point of treating people with OCD on the show was to do something called "exposures" where they would gradually be exposed to the feeling of NOT being able to perform a compulsive act, and learn to cope with that anxiety spike for longer and longer periods of time, until they effectively defeated the compulsion. This wasn't the only answer of course (I'm sure medication and therapy were also major players) but this was the part that stuck in my mind.

We have a little bit of OCD going on in our house. I don't say that facetiously. It's fairly well accepted that there is some overlap between autism and obsessive compulsive disorder. At the same time, I'm learning unfortunately Dan and I most certainly are not psychiatrists.

I've written before about Ethan's fear of buzzers. He's conquered many of them. He no longer runs away from the game Simon or episodes of "Family Feud" on TV. He learned to cope with the buzzer his art teacher had in class for when kids started acting out. So he's made some great strides, but now we have a new nemesis: the dryer.

In some respects, I get this. Our dryer (like many) makes a loud buzz when it's done. One day it buzzed when I was right next to it and not expecting it, and I jumped a mile. So in theory I understand why he doesn't like the dryer. But Ethan has taken this to a whole new level -- and we may have accidentally made things worse.

The dryer fear started a few months ago. I noticed Ethan was often asking if the dryer was running or when a load was going to be done. He didn't want to go in certain rooms (above the basement) if the dryer was running. Then I caught him outside hiding when the dryer was about to buzz. He refused to go into the basement if the dryer was running. When we found out recently that Ethan was willing to go to the bathroom OUTSIDE rather than use the bathrooms while the dryer was running, we felt this had gone too far.

That's when I thought of that show, and of exposures. I had a thought: why not MAKE Ethan wait at the top of the stairs for the dyer to go off? We weren't going to surprise him or startle him on purpose. We weren't going to make him go right up to it. But why not gently force him to be exposed to that sound, where he would then realize it wasn't so bad after all?

And so we embarked on what would turn out to be a mighty struggle. I didn't realize how deep the fear had woven itself. Ethan was petrified and in tears. Chloe and Anna wondered what in the world we were doing. "No, not the dryer!" Ethan was yelling while I was yelling, "We're not hurting him, really!" to his sisters. After what seemed like an eternity the darned thing buzzed for literally 1.5 seconds and we were done. I thought for sure we might have diffused at least a little of the fear.

Umm, no.

If anything, we'd made things worse. Ethan starting asking more than ever about the state of the dryer. In retrospect, we moved too fast with the exposure. We should've let him cover his ears. Or allowed him to be even further away.

A few days later Ethan was sure he'd gotten his revenge, because lo and behold, the dryer BROKE for the first time in about 10 years. And when it broke, it buzzed for an extra long time. Thankfully, he wasn't home, but I told him about it when he got home from school, and his eyes got wide. He wanted to know how many seconds the dryer had buzzed, what it sounded like, and if I could hear it from every room. "This is because of what you tried to do the other night!" he laughed with glee, but it was all short-lived. Our friendly local handyman came and fixed the dryer two days later.

Ethan was resigned when he heard the news. But he perked up when I told him the way the guy had purposely made the dryer buzz to test things out, when we were both standing right next to it -- and I hated it. Ethan seemed to take great pleasure in knowing it had scared me.

Yes, I'm empathetic -- but I know Ethan can't live life controlled by the dryer. The other day I found him outside before school, stressed because he knew it was going to go off. I wondered what in the world we should do as a next step.

That evening the dryer was running, and Ethan really wanted to play Monopoly (it's hard to get people in our house to play Monopoly, the game that never ends). Maybe this is going to sound cruel, but I decided to use it as a bargaining chip.

"I'll play Monopoly with you, if you will stay right here at the dining room table when the dryer goes off," I told him.

He was good with that. Only as the time grew closer, Ethan became increasingly more agitated and trying to block his ears or run out of the house. I felt bad for him. He reminded me of the people on the show, like the man sweating bullets and pacing because he couldn't do his ritual after seeing the El Camino. I also felt angry, seeing him all torn up like this. We were NOT going to let the dryer win.

Dan found some videos of dryers buzzing on YouTube (yes, you truly CAN find almost anything on YouTube). He played one as we were waiting for our actual buzzer and Ethan was fascinated. I was, too - first, because this video had the world's longest dryer buzz (whoever designed this Kenmore model dryer, it was pure evil!). And also, I realized from the comments that there are a lot of people out there that have a fear of the dryer buzz.

Watching Ethan watch YouTube reminded us that it's not just the noise -- the problem with the dryer buzzing from the basement was the not knowing when it was going to happen. It was like the stress of playing that game Perfection, with all of the yellow, tiny, shape pieces, just waiting for the timer to be up and for the shapes to pop.

The question will remain: how to deal with not just annoying sounds, but the anticipation, the not knowing exactly when they will appear?

I think we're going to have to take it one sound at a time.

As for the dryer, it went off that night, and while I barely heard it, Ethan said his whole body jumped inside. He may have struggled, but he did it. Maybe next time, we'll make him use the bathroom while the dryer is running - but allow him to cover his ears.

Ethan thinks we need to throw in the towel and find a dryer that doesn't buzz when its cycle is done. And so the other night we were back on YouTube, watching videos of dryers that end by playing a song. He's holding out hope we'll get one someday. I told him he better not sabotage the dryer to speed up the process.

I'm confident -- we will win this dryer war. Then onto the next battle.