Susan's Blog

Monday, December 24, 2018

Timer heals all things

When Nat was five he started his life at the May School in Arlington. The May is a behavioral school, dedicated to positive reinforcement such as earning tokens towards desirables, taking small incremental steps towards goals, and scrupulous attention to “behaviors.” The May people jumped right in to getting Nat’s attention, which is one of the first lessons taught in behavioral schools. I was very heartened to see Nat learning how to pay attention to people.

Nat’s first May teacher was joyful and kind. She focused her bright eyes on Nat and got him to listen to her sometimes. At the May Nat learned the concept of the classroom, of paying attention to the teacher, and doing what she said to do. That was huge.

Nat did well with learning the skills of the school life, because school skills work well with step-by-step, systematic reward-based approaches. But about six months in, the May began its Home-Based program, where we were to be trained in using these same techniques on Nat at home. That was when we kind of lost the thread. Teaching play skills in particular stymied me. “Put doll in car.” “Yayy, good job, Nat!  Now, Move car.” “Yayyy! Good job! Car says “vroom.” And so on. I saw that Nat could indeed learn how to look like a boy at play but we could not make him see the point of playing this way. The scales fell from my eyes and I began to sour a little on the May’s approach. We were only giving him forms to follow, structures, systems — but no joy. It was all too robotic. And besides, Nat’s joy was and still is found within his own mind. It seemed false, and missing the forest for the trees. I became skeptical of the whole structure-system-reward approach and told myself that Nat did just fine with my style and was learning flexibility. Over the years we have had our difficult phases with Nat, where we wring our hands and try to figure out how to help ease his anxiety. We look for solutions, we ask doctors, we adjust medication. But we don’t use timers and intricate schedules, that’s just not how we live.

Enter Elaine and Miyabe, Nat’s new Shared Living Providers. Elaine is an autism specialist, a transition-vocational special educator. And Miyabe, her wife, is one of the most brilliant minds I have ever met, and is also highly organized and intensely into structure.  When we first began discussing the possibility of Nat living with them, we made sure that they understood the full range of Nat’s anxiety (or “behaviors”). The four of us took a few years considering whether Shared Living with Nat would work. They had not experienced Nat having a full-blown anxiety episode, but they assured us that they could handle it, mostly because they would structure their home environment so that he would not feel too anxious to begin with. Before Nat even moved in, they had created a notebook with pages of brief instructions about what to do and how he can do it, such as a page on Morning Routines, or What to do in the Afternoon for Fun. He had a big whiteboard in his room for his weekly calendar, rules printed here and there, and labels on things like the shampoo bottles. All to head off anxiety at the pass.

I respected all of this, but deep in my heart I was afraid they’d still encounter terrible times of Nat’s anxiety. Of course we had not kept up with the behavioral techniques the May tried to teach us years ago. I’m not organized that way. I hate planning. I hate schedules. It is very difficult to create a schedule for a Saturday. If you try to plan, what about if something else comes up? Then he’s upset about the other thing not happening.

But once Elaine and Miyabe started living with Nat and implementing schedules, and Ned and I continued not to, we all started to run into trouble. Nat was having terrible episodes of anxiety where he’d be slapping his head and screaming. Elaine and Miyabe were very stressed out. But they were convinced that the outbursts were about inconsistency in Nat’s life — meaning when he was with us, because we were not adhering to calendars and schedules. Elaine and Miyabe, on the other hand, were using timers and writing it down, even for things like, “15 minutes until leave for the Y.”  But we were not, that’s just not how I roll. I continued to tell them that Nat needed a medication adjustment — true — and also that he was always anxious in the winter. Plus he had only just moved into their apartment in September.

Finally things got really bad. We asked the doctor to increase Nat’s Gabapentin. But Miyabe felt there was something missing. Why couldn’t we just try it a little? Couldn’t we try to stick to the calendars and schedules rigorously, to go over them the same time of day and week with Nat every time, even to use the timer if possible for transitions? Maybe — just maybe — if there was consistency across his life, he’d be less anxious. I took the timer and said I would try. But deep down I worried that I wouldn’t be able to, that it just doesn’t work. Or that Nat would be skeptical (why is Mom suddenly using a timer?) and he’d resist.

I was wrong.

Because I really want Nat’s new living situation to work, I gave it an honest shot, using the timer the first chance I got once he was home visiting us. I heard Miyabe in my head say, “So yah you turn the dial to 15 minutes and then in 15 minutes you really have to do the thing you said you’d do.” I tried it. In 15 minutes I would get ready to go food shopping with him — something like that. I went over to my puzzle and worked on it and then suddenly, “dingggggg.” I had to stop. I was surprised how short 15 minutes was. But I stopped immediately and Nat watched as I got my stuff together. Out we went.

I won’t tell you that all the anxiety simply melted away. But as Nat’s medication increase took effect, and as Nat began to see that we were indeed using the timer for things we used to just kind of get to when we were good and ready, he softened up. And I found I was able to create schedules just breaking up our normal unconscious routines. I could set the timer for an hour until pills. An hour until ice cream. Do Facebook for 5 minutes. As long as the timer was ticking and the schedule said something, and we complied with our rules, Nat was content. Ultimately, he realized we were serious. He realized he could trust us.

And that trust bred an ease within him, a reconnecting between us. Paradoxically, the robot-like approach of first-then-and now this, and then reward that we learned all those years ago at the May has led to a new sense of organization and purpose in our life together, a heightened awareness on my part of Nat as a person with needs, rather than a problem that needs maintenance. Again I learn he is not mysterious and difficult. I just need to use these simple tools to keep myself organized, and then he responds with happiness. And though it’s a little more work for me to remember to sit down and write up a day of tiny events and commit to the timer in between, the relief we both feel makes it immeasurably worth it.

 

 

6 comments

Wow, what a great shift and relief for you.

— added by Ed P. on Monday, December 24, 2018 at 12:33 pm

Wonderful!

— added by Susan on Monday, December 24, 2018 at 2:22 pm

From what I have observed, Jeremy must have predictable outcomes. He needs to have a beginning and know when there is an end to events or activities. We use visuals and timers throughout the day, and since it reduces his anxiety tremendously, it also reduces ours. So glad you have found this method works for Nat too. The effort will pay itself back to you big time!

— added by Candy on Tuesday, December 25, 2018 at 6:56 pm

What wonderful words… glad the approaches have both had efficacy at different points. The issue we are finding now and my BCBA friends mostly agree is that behavior analysis and anxiety are not easily compatible in their approaches with kids with ASD and ID. We are struggling, trying to mix hormones, a new ABA school where a well meaning BCBA/teacher and clinical director don’t seem to understand how to mix the two approaches because, now, we need both at different times for different behaviors. Such an important issue, “mixing” approaches, to put out there. Hoping for a day something works for A… basically waiting for fairy dust. Love to you all, you were the first mom of a kiddo with autism I ever chatted with, over good burgers in Waltham, post A’s dx. You have a lot to offer us all.

— added by Laurel on Tuesday, December 25, 2018 at 7:14 pm

IBI/ABA was determined we would live by the schedule. I refused. It was one of a number of “discussions”. I am just like you… it’s hard to do and maintain. Maybe it’s because there are so many other autism things over the years it just feels like one too many????

Kid 2 (now 17 – the severe one ) has never been “anxious” as most (including kid 1 – now ADHD, instead of HFA) have dealt with it.

In school the schedule works and it works well. Now, he doesn’t need it so much there, he can go to his audited classes without supports etc. But every so often, he has a social story for an issue that arrives. The Teacher has written 2 this year. Nothing major, no big issue… just a new situation that he didn’t know how to manage and the rest of us who got too complacent because he makes it look easy at times and realized that structure and instruction was needed.

I still don’t live by the schedule, but I do admit First/Then was the best thing that he ever learned. He reads my calendar and my “to do” lists all the time. One is on the wall in the mudroom, the other always on the kitchen table. Maybe something that simple in case you get busy and forget will help too??

— added by farmwifetwo on Thursday, January 3, 2019 at 7:05 pm

So happy for both of you, will keep this in mind,thank you!

— added by kim mccafferty on Friday, January 4, 2019 at 10:17 am

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