Wednesday, February 3, 2016

Breaking the Pattern

It's no secret that people on the autism spectrum often prefer to weave certain patterns or routines into their daily lives -- and that sometimes disrupting those routines can be stressful.

We're thankful that Ethan isn't the type to be too rigid or particular about the way things have to be done, but sometimes we run into challenges. This is usually because I realize too late that some behavior or pattern has become a necessity for Ethan rather than a preference. That's when we know it's time to disrupt the pattern -- before it becomes even more painful for him to have the pattern disrupted.

All of our kids have always wanted me to put them to bed. I don't know why, but I don't usually mind, because it's a chance to chat with them about their day or give extra cuddles. But over the past few months Ethan's bedtime routine has gotten more and more, well, routine.

First it was saying prayers together. That's cool. Lots of kids have a moment like that with their parents before bed.

Then there was Ethan's invention: The Talking Room. The Talking Room is Dan's and my bedroom. Before being tucked into bed, Ethan wants to go to the Talking Room, turn on one light, shut the door and closet door, climb under the covers, and always ask, "So mamma, what would you like to talk about in The Talking Room?" Usually this means he wants me to tell about my day. Okay, that's fine. I'm glad he's asking about my day. I can understand him being curious about what I do while he's at school.

After that comes the tucking in ritual. I don't know what happened here. It started with a simple prayer and kiss goodnight. Somehow it has morphed into the same script, every night.

Me: Goodnight, sleep well.
Ethan: See you tomorrow.
Me: Okay. (Pause, while he waits for how long the pause is going to be). Yup.
Followed by both of us doing a silly laugh like Ernie from Sesame Street.

I have no idea how this came about. Obviously at some point this happened accidentally. I haven't a clue why I said "Yup." I didn't think it was a big deal at the time. But for whatever reason it set off a button and Ethan decided, "Yes, this is how I would like to end my evening."

I should have seen the warning signs. Several weeks ago I was out late and Ethan accosted me the next morning: "I was waiting and waiting for you!"

"I told you I'd be out late and that daddy would put you to bed."

"But I like when YOU tuck me in."

Then there was the night when we quickly did our verbal routine and he accused, "Mama! I didn't hear you say 'yup'!" A few nights later it was, "Mama, you didn't do the laugh!"

Around then I started to realize we'd dug ourselves into a little rut. We needed to make some adjustments.

Here is the thing about this: there are some autism advocates who disagree with this line of thinking. There are some who would say who are we, as neurotypical people, to not value the important place routine and ritual plays for people on the spectrum? They are comfort. They bring order to their world. Participating in this kind of scripting is a way we show our love for them.

I understand this, but I believe there can be a middle ground. Our goal isn't to grind any trace of scripting or ritual out of Ethan's life. But it also is to help him live his best life in this typical world. It's to help him learn how to cope with the anxiety that tries to come if he doesn't partake in a certain routine. Why is this important? Because there will of course be times that the routine can't happen.

It's a long way off, but what if he wants to live independently someday? Mom can't always tuck him in at night. Or jumping back to the present, what if I go away for a few days? Is he going to end up sleep deprived because he couldn't fall asleep for hours without our little routine?

The more we can teach flexibility, the more he will have the tools he needs to live a life that is not always scheduled and exact.

The next night we told him daddy was going to tuck him in. He wasn't happy. We found a compromise -- I said prayers with him and gave him hugs, then Dan brought him upstairs. The night after that we did The Talking Room but I said we weren't going to say the usual words when I tucked him in.

"Why??" I could tell this was stressing him.

"Because you're a little bit stuck, Ethan. We're just trying to help you get un-stuck. It doesn't mean we can never say the words again. It's just we're trying to help you not to HAVE to say them."

The night after that I told him no Talking Room but we could say the script -- and warned him daddy would be tucking him in the next night.

I think he's starting to see that we respect him, love him, and want to compromise about things like this. We don't want to be ogres who care nothing for his very real need for ritual. We don't want to make him go cold turkey. It reminds me very much of a show I used to watch about people with OCD. They were never forced to stop their rituals completely, immediately. Instead the professionals working with them would introduce what they called "exposures" -- times when they were forced to go without the ritual for at least a small amount of time, sit with that feeling of their anxiety spiking, and then feel the anxiety go down.

This isn't really a big surprise: it seems to be clear that somehow, in certain ways, obsessive-compulsive order and autism are most certainly linked.

I hope Ethan sees that we long to approach these types of obsessions in the same type of way: doing our best not to push him to a point of too much stress or anxiety, but urging him to let go just a little bit, to push himself as much as he can. I hope he sees that while we can't completely understand the way he thinks or why he needs certain things, we are trying to understand.

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