Susan Senator

No matter how busy and fulfilled I feel day-by-day, I still have pockets of time that trouble me. I fill those pockets with obsessive thoughts, which first please and then plague me. Although I no longer struggle with full-blown OCD, I still have difficulty staying in the present and then moving gently forward. I still get stuck on things that happened, which then keep my brain tripping over the details. Sometimes I think I’m looking to relive what happened, sometimes I think I’m looking to redress what happened. (You could argue that writing this in my blog further exacerbates whatever occurrence I’m hung up on, but I find it helps me make sense of it and thus purge it. I don’t know why it has to be public, however. Everyone in my life asks me that: how can you put yourself out there like that? They worry about me. They are glad they are not like me. Maybe they admire, too. Whatever. Writing makes me feel stronger. Writing is self-affirmation for me; sitting and thinking is self-destruction. I don’t know why that is. Anyway, blogging and sending myself emails when the blogging subject is too excruciating is a way I can connect what goes on in my head to the world outside; I think that’s why I do it. You’d think I would examine that, but I don’t.) One thing I have found is that in blogging, although I certainly get my share of Trolls who say mean things to me, there are so many others who feel what I feel and let me know, and then I am no longer alone in my universe of thought.

When my OCD was acute and getting in the way of my life — and this was, unfortunately, when Nat and Max were babies — I had a wonderful therapist who was able to probe the deeper reasons for the OCD, and also to help address my behavioral expression of it. Aside from being on a course of Prozac for a while, which of course helped keep my brain “slippery,” as I thought of it, R’s work with me was nothing short of miraculous. I think that is because she understood that in addition to the imprisonment of OCD itself is the debilitating shame that beats you down.

The best thing she ever said to me was, “I look forward to a time when you will simply say to yourself, ‘I need to do this checking,’ and embrace it as a part of you.” By saying this, she removed the shame and gave me a way to shrug and check or whatever I needed to do. In lifting this burden from me, she actually made me feel less compelled to behave that way! She made it less of a Big Deal. She was the first person ever in my life to say: “We all have our things like that. You are not a monster.” That attitude was eminently healing, to a point where I now only have moments of being stuck in a negative thought cycle.

Of course I wonder how to translate this kind of liberating acceptance to my children. I never want them to feel ashamed of who they are, of things they cannot help. I use shame on them when they are being thoughtless to others, rude to adults, things like that. But in terms of who they are and what they want to be in life, I try to embrace that.

This all makes me think about Nat and perseveration. The age-old tension between Autism Educators and Autism Supporters. Being told when Nat was 5 that “whatever he is able to do in life is up to you and the effort you make.” Constant vigilance against the Evil Stim. Slap it down, redirect it, interrupt it, retrain it, give him something else to do, something Age-Appropriate (meanwhile, have my other two, NT children ever done anything Age-Appropriate? Beanie Baby play well beyond kindergarten years; infantile video games; wearing costumes; never evolving into Boys Who Play Sports…) How shaming is that?

I think I knew that it was not my way, even then. That was before I was self-aware. I would lazily reinforce the training Nat’s teachers gave us. I would bastardize the behavior charts into other things, into little storybooks and songs, to turn this disciplining into a game, something fun and natural to me. Increasingly, I would say that “the way I am supposed to raise Nat is really not in tune with my natural parenting style.” It wasn’t until I had some validation from Exceptional Parent Magazine, who actually bought an article from me, my first, in 1997, that I realized that maybe I did know a thing or two. For years I looked for a psychotherapist like R who would work with Nat, making sure he was happy inside and finding ways to express himself and be himself. But, of course, no psychologist would treat Nat with cognitive therapy once they heard he was autistic. They would insist that he needed — you guessed it — behavioral therapy.

That, combined with what R was teaching me, allowed me to eventually create what we now do with Nat: get ourselves to a point where we let him do whatever he needs to do and embrace it as a part of him. To be good to him, and never shame him. I hope I remember to do this, every single day, for him and for me.