Susan Senator

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.

About 25 years ago, I suffered from acute Obsessive-Compulsive Disorder. It took the form of going back and checking. Really ugly stuff, I’m not going to describe it here. Until I had a very wise therapist who really understood — that, combined with Prozac, and the day came where I felt the tormented tickle of “you better turn around and look,” yet I walked on.

Moving forward is particularly difficult for me because I often still dip into obsessive-compulsive disorder. Now it is not the way it was back then, it is more of an idling, stalling engine. It stays put, rather than whipping me backwards. In other words, it is bearable. But that, combined with my sharp and heavy mood swings, make it a challenge to see my way out of the chaos that is my life. I hear things on two levels, all the time. I hear the meaning the person is trying to convey, while I hear all the lifelong messages in my own mind — emotional clouding of the picture, checking and re-checking the words.

This condition is worst when it comes to Nat. I have conversations about Nat and I’m parsing the intended message, right along with, “Wait a minute, is this message I’m hearing okay? What did I do, is this my fault? Did I screw something up, or did they?” Right away it’s either-or, right away I’m defensive and really it’s all because of fear. I get afraid that my whole world is going to collapse — usually in terms of Nat. I go right to “okay, a bad thing is happening, just like always, what did I miss, what should I do now?” It is so hard to sit and understand, to sort out the actual important message that I’m supposed to hear. I can do it now, with great effort. And my husband Ned’s cool water, his ability to stay clear.

My panic about how the world is treating Nat — and by Nat, maybe I mean me? — is ingrained, layered into my skin, muscle, and blood. Like any new mother, I held him so close because that was my job, but unlike many non-autism mothers, I never let go. I couldn’t. And so my own development took a turn as a young woman because I had a baby that no one understood. My child has struggled to learn, to grow up, and to move away from me but I have been SO afraid to let that happen. So neither of us has grown completely in that sense. I’m not saying I was right to be this way. I’m saying I can barely help it. You could say it’s a co-dependent thing Nat and I have. Even when he’s pushing me away with man hands, I let him, but I feel my stupid veins stretching right back out towards him, looking to reconnect.

Having a child no one gets is probably the most elemental scary thing that can happen to you as an adult. It’s no coincidence that my OCD began when Nat was a toddler. You have this fragile, beautiful innocent little being in your care, you seeded him, nurtured him inside your own body. You made him. And now he’s kind of being rejected by the world. Well, that’s how it felt to me, I think. It’s a Refrigerator World, not a Refrigerator Mom. The Mom is the opposite of the Refrigerator, she’s a hot oven that has no thermostat.

Every doctor had a theory, and when it didn’t apply, they shrugged. Every school had a dogma, and when Nat continued to defy their ethos, they kicked him out or they held on but their anxiety was transmitted to me. Now I don’t even expect people to understand Nat. My wounds for him are just weakly scarred over, lumpy and prone to ripping open again. Even when I have evidence that people do understand and care deeply, there’s a part of me that remains unconvinced, the OCD part. I never have had the feeling of sweet, deep rest. I have never been able to let go of him entirely.

It is not healthy for either of us, each being so tangled up in You.

People smile at this and say, “well, sure, you’re the mother.” But I don’t think they get how it actually feels, to be the one and only for someone you love with the force of a hurricane, an earthquake, a tornado, a shark attack. So when he’s out of my sight, I am always always wondering — will he be safe?

Am I consigned to always be dealing with Nat this way? How do I heal? How do any of us heal the ravages wrought from ignorance. My rage at the stupid ignorant world pours down on all of you and then it’s all rained out. Then, out of nowhere, I’m bizarrely hopeful again. Flying by the seat of my moods.

And so with Nat, I go in a loop. It’s relationship OCD.

Will I ever be able to walk on, to believe in his wellbeing, without looking back?