Re the Bed, and What I Wrote

In this blog, I am honest, and for the most part I am forthcoming. There are, however, exceptions. I withhold points that would identify our surroundings, or Martin’s friends, or people about whom I tell stories (unless I have their permission to divulge). I don’t discuss things like IEP meetings or school services, because I wouldn’t want to compromise our relationship with our school district or Martin’s school. Marriage and family life are off-limits except as they pertain directly to Martin’s autism and recovery.

Most importantly, I avoid writing details that I think unnecessarily violate Martin’s privacy. I expect that Martin will one day read these entries, and will know what the world knew about him during this time, and will hold me accountable for the occasions when I’ve said too much. And even if Martin never chooses to read this account of our journey, I know what appears here. Adrian knows what appears here. We have our own thoughts about what information should not be on the internet.

In Friday’s post, I mentioned having to carry Martin to the bathroom at night to prevent him from wetting the bed. I debated, with myself, whether to include that tidbit. It was relevant to the story, and mattered to our vacation: Martin wanted to sleep over at his aunt’s house with his cousins, and I found excuses not to let him, because I didn’t want him to have an accident, which might’ve caused his cousins to make fun of him. This dynamic lingered throughout our stay, as my sisters-in-law kept opining that Martin should sleep over with his cousins. Because my sisters-in-law don’t know that Martin has autism, I was hiding as many of our ongoing challenges as I could.

I’m still wondering whether I made the right choice, when I chose to include bedwetting among the vacation SNAFUs. According to the book I’m now reading about bedwetting, some 10-15% of kids Martin’s age still have trouble, so it’s not like we’re alone. In Martin’s case, there are physiological reasons that might keep him from overcoming the tendency; as I understand it, Martin’s brain stem, which coordinates basic body functions, mirrors his peripheral vision. Just as Martin shut down his overactive peripheral vision, his brain stem lost awareness of non-immediate sensations. Martin doesn’t ever “kind of” have to go to the bathroom. Either he doesn’t think he has to go, or he suddenly realizes that he has to go right now.

At this time, Martin doesn’t have a particularly developed sense of shame when it comes to what other kids might consider embarrassing. He might not even care that I mentioned bedwetting. Like I said, though, I’m not worried about Martin calling up this blog and reading it tonight. I’m worried about middle school, or high school, or college, when he’s farther on the recovery journey and I tell him about this record I’ve made.

Which brings me to the reason for this post:

Readers of the blogosphere, fellow autism parents, world at large—judge me if you want. With this blog, I try to inform, to record, to prove or disprove, maybe even to inspire, a bit. The relationship with you is reciprocal; because I’ve let you into our world, you get to judge me. If you must. I can take it.

But Future Martin is another story. Your judgment, Future Martin, I fear. This post is to tell you that I know I don’t always get this process right, and that I am trying my best.

The Posting Dearth, Explained

It’s been a week, again. More than a week, without a post. I frustration posted last Tuesday, and then abandoned my readers. My own private cliffhanger.

Let me assure you that Martin is fine. We’ve started his new supplementation protocol, we’ve had ups and downs, and I’m back to—my, um, usual sunny self.

The blog dry spell occurred because I’ve been occupied with getting my business affairs in order.

I’m not dying. Not as far as I know.

Instead, I’ve quit my job.

Quit my job!

For nearly thirteen years, I’ve worked as an attorney for the same large law firm, and it’s a job I’ve always felt privileged to hold. I have talented co-workers who bring out my best efforts. I’ve been compensated well. Lawyer comprises a substantial part of my self-identification.

It seems like I should say the decision to quit was difficult.

It was not.

My quitting strikes a blow to the family finances, but not a death knell. I am very, very fortunate to be able to make the choice, and grateful for Adrian’s career to facilitate my lack of one. We determined, together, that Martin’s recovery requires (at least for a while) a parent dedicated full-time to the task. In the past months there have been too many ASD articles unread, too many tests uncompleted, too many exercises undone. I’ve been exhausted and unable to keep up. That must change.

It’s not that I am going to be unemployed. I’ve just stopped moonlighting as an attorney in order to concentrate on my day job, healing Martin—which is another job I will always feel privileged to hold.

This will, of course, leave more time for blogging about healing Martin. Please expect more regular posts. Perhaps daily posts. Perhaps too many posts. If I go a little crazy with it, let me know.

And so the next chapter opens.

The Literary Crowd Weighs In

I’m a writer. Have I mentioned that? A writer of more than this blog, even. I’ve referred in various posts to my being a lawyer. I don’t think I’ve said that I also write. Essays. Fiction. Stuff.

I belong to a five-person writers’ collective. We meet monthly to discuss each other’s recent work. This month, for the first time, I told the other members about this blog and asked for their thoughts.

I made the request before last weekend’s “card-counting” incident. Since then, I’ve reconsidered whether I should have brought this exercise to the writers.

What the hay. What’s done is done, and I got some worthwhile editorial comments at our meeting last night. I’ve decided to diverge from my musings about Martin and share some of the suggestions, to give everyone an idea of where I might head with the posts. I’ve grouped the ideas into bullet-points. Lawyers love bullet-points. Sometimes it carries over into their other writing.

  • More in-scene action. I give a lot of space to pondering, analyzing, explaining, and (in the word I used above) musing. My collective does not disapprove of that, but finds the “scenes” most enjoyable, such as Martin interacting with the boy in the museum, or shaking a waiter’s hand. I’m also asked to provide more balance by describing events that do not necessarily evince progress, i.e., that illustrate the reality we live with today, pre-recovery. (“The positive parts are presented in-scene,” said Writer Paul, “but the bad parts are presented in more of a distant and diagnostic fashion.”) I suppose, if I strain my memory, I can come up with a few anecdotes about self-stimming or lack of joint attention.
  • More Adrian. I mention my husband often, but I’m not allowing him to be enough of a “character,” to occupy fully his own role in Martin’s story. For example, I should stop summarizing conversations I have with Adrian, and instead quote his voice. I should occasionally allow Adrian some blog space for reactions and commentary, too. I’m still contemplating these ideas, and whether I can further exploit Adrian as a character while maintaining his privacy as, well, a person.
  • A wider cast. We travel. We have friends. Martin goes to school and on playdates. We encounter a lot of people, and I should consider letting more of them color our adventures. I’m wondering whether that means I need to keep coming up with aliases. I’m starting to have trouble keeping them straight.
  • More about writing and lawyering. I can make myself more human, and perhaps appeal to a broader audience, if I lasso in aspects of my life beyond Martin’s recovery. (Strangely, my writers’ collective operates under the impression that I have a life beyond Martin’s recovery.) I’m still contemplating this idea, too. Months ago I read an article purporting to describe the top ten things bloggers do to lose readers, and one of them was going off-topic. This is “a parent’s real-time blog of autism recovery,” not “a parent’s real-time blog of whether she’s still going to turn that novel draft by 2012.” So we’ll see.
  • A glossary. I’m doing a decent job of keeping the autism science to a minimum, and thereby not alienating readers outside the ASD community. (I took credit and pretended this was intentional. Faithful readers know the truth: I don’t understand the autism science and will look foolish if I try to present it.) At the same time, I may throw around terms unfamiliar to a new reader, thereby forcing him/her to rummage older posts in search of a definition. I should consider a glossary page that collects ASD-insider terms.

I should say that my fellow writers are good for more than criticism. They also talk about what they like. Apparently this blog engages the reader because it is not clear where the journey will end, whether Martin will recover. The reader feels invested in the quest for more information about autism, its sources, and its defeat. In that vein, the pictures help. Seeing Martin in action, even if only from behind, lends an immediacy to the reflections.

I was happy to hear, also, that I come off as well-read, reasonable, and hardly kooky at all. Though perhaps my fellow writers just said that because I was sitting with them, in person?

Finally, the overall quality of the writing, wordsmith-wise, was deemed high. That was comforting. One of Martin’s service providers once said to me, “You probably aren’t that concerned with it for purposes of the blog, but you do write so well.” And I thought—not that concerned with it? Yeah, sure.