An Open Book

My hands are looking pretty beat up these days, covered in scratches and scabs. My wrists too. Moe is having a rough time.

When things are really bad, he bangs his head on the floor, the table, or any hard surface he can find. And Jeff and I (or our incredible nanny who pretty much deserves hazard pay by now) spend a lot of time trying to keep him safe. And we get a little scratched up in the process.

I suspect he started off not feeling well, maybe with a sore throat. Then he started banging his head, leading to headaches, leading to more frustration and head banging. Moe doesn't like it when we don't let him hurt himself, so he scratches.

And now my hands look like this. It's minor in the scheme of things. Whatever Moe is feeling to make him want to hurt himself and lash out at us, is worse. I know that.

But it poses a bit of a dilemma for me. I work full time, and I don't hide the fact that my son is autistic. For one thing, I probably wouldn't have my current job if I hadn't started blogging about Moe. I had taken six years off before going back to work so when I started interviewing many of my writing samples were from this blog. So anyone who interviewed me knew at least some of this story.

Most of my co-workers know as well. It's easier to have it be out there. I was nervous about that at first. It's hard enough being a working mom, let alone one with a special needs child. But it makes some things easier to explain, and you never know when you'll find a connection with someone with a similar story.

Besides, as a blogger (read: oversharer), it would be more uncomfortable for me to hide this side of my life. So for the most part, I'm open about Moe. I work with kind and intelligent people who don't try to sell me on the latest fad cures, so I like it when they ask questions. They actually listen. So, when a co-worker notices the bandaids on my wrist and jokingly asks "tough weekend?" I don't make up an excuse about a cat or scratches from the garden. Yes, it was a tough weekend.

But bringing the really hard stuff to such a visible place, not just on this blog but literally on my hands, can be difficult. Work is my escape from life with autism. I don't want those emotions at work and these scratches are a reminder of the hardest part of my life, watching Moe struggle. Worrying about his future. Getting beat up by my own kid. And I don't want that part, the worst part, to be how Moe is represented to the world.

So let me show you the sweet side of Moe too. The one where he snuggles up to me and we hold hands, if only for a minute. And his eyes, such a bright blue when he smiles. A smile that is all too rare these days but that we don't stop fighting for every single day.

Still Blogging

It's been a while since I've blogged here, a couple of months, at least. But since I'll be attending the BlogHer conference in another week, I thought I should post something, so I can still call myself a blogger.

Life is chugging along. Moe had several very rough months. We saw a heightened aggression from him, coupled with some very frightening new self-injurious behaviors. Moe was not only biting himself, but he also started banging his head—hard. We thought it was related to some new molars, but the behaviors continued long after that was done. He gave himself a huge bump in the middle of his forehead. He put his head through the wall. We did everything we could to keep him safe, but when we would stop Moe from banging his head, he got mad and would turn his aggression on us, his nannies and his therapists. Behavioral interventions were not working.

So we made the very difficult decision to try a new medication. This is not a decision we took lightly, not only because medications can have serious side effects. Not only because Moe has such difficutly learning and communicating that we need to make sure he is as clear-headed as possible. But also because we've been here before. Last year, we tried Tenex (as well as the related drugs Clonidine and Intuniv). This was disastrous. Behaviors and sleep got worse. I didn't want to get burned again.

After several months of trying everything else we could think of, we started a new drug, Risperodone. I don't share this information lightly, as it is, in some sense, very personal information to share. But I share it because I have learned from others' experiences, and I hope others can learn from me.

So far, Moe is doing well on the drug. The biggest change is that he is falling asleep on his own, and staying asleep. We are no longer using melatonin, which seemed to make Moe really unhappy anyway. This, in and of itself, is an enormous benefit for the entire family. Jelly is also back to sleeping through the night. She, like Jeff and I, had become accustomed to 3am wake ups.
For the first month or so, behaviors dramatically improved: no more head banging, increased attention, less frustration and impulsivity. But it's not perfect. Moe seems upset many mornings, and the last week or so, we've seen some gradual increase in behaviors. We're taking data, and may increase the dose if necessary.

Most importantly, we found a doctor we like, who knows kids like Moe and wants to help. We are watching for the side effects, the most common of which is increased appetite leading to weight gain (and perhaps some link to increased blood sugar and diabetes). But so far, he's doing okay.
What else is going on? We finally decided on a kindergarten for Jelly and are excited about the start of the new year in just 5 weeks! I cleaned out the enormous amounts of clutter in her room (she saves everything), went on an Ikea shopping spree, and set up a new "big girl desk" area in her room, complete with pink chair, and many pink accessories, as well as an "Elsa blue" lamp. She's growing up so fast, and while each year with Moe seems hard-won, some days I feel I can hardly remember so much of Jelly's life.

I have a lot of things to say about a lot of things: Jelly's evolving relationship with Moe, life at a start-up in Silicon Valley, how we're doing with AAC (hint: we need a new approach), the intense feelings that come with living with a very aggressive child, the insantity of the Bay Area housing market. But this post has gone on too long already.

If you read this, thank you. If you'll be at BlogHer this year and want to meet up, send me an email to wantapeanutblog [at] gmail. I'll be at the special needs MiniCon as well.

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