Everything changed in January 2001. It became clear that Damian had some kind of speech delay and possibly some other issues. He was loving with us, but oddly passive, and he was either terrified of other people, or he ignored them. He spoke in quotes from books, but he almost never used speech to ask for anything and he’d never answer a question with words.
He was two years and nine months old when he was diagnosed as mildly autistic. As we started down this strange and painful path, it took over the journal. It’s an all consuming thing to have a child diagnosed with a pervasive neurological dysfunction. I started to feel odd: my readers had come expecting an assortment of stories but now I only had one tale to tell, the tale of my child’s growth and change on the road to recovery. Time for a new journal. This journal.
I've brought over relevant archives from the old site, so you can -- if you so choose -- read this story from the beginning, from denial through painful awakening and intensive therapy to the present as of 2005, a child who delights with his imagination and emotional intelligence but who still has gaps and areas we continue to work to strengthen. Because I began this before I knew anything was wrong and continued to write throughout the experience, it's all here. Dip in where you choose, take from it what you want -- or need.
When Damian was first diagnosed, I searched the web and books for some touchstones. It was hard to find anything. Most of the writing is third person, most of the personal writing is about children who are more severely affected. It seems like the higher end of the spectrum, the kids with Aspergers and high functioning autism -- and the kids near the spectrum -- those with sensory integration dysfunction, hyperlexia, etc. -- are massively underrepresented in the literature. And there's almost nothing written on the Floor Time therapy we're using, particularly from a parent's perspective.
I felt very lonely and isolated after Damian’s diagnosis. I write this now and post it online in the hope that other parents can read our ongoing story and feel less alone.
This journal originally had three parts:
Personal essays relating to Damian/autism/what it all means/how things are going. If Damian hits a milestone, I’ll probably want to explore it in more detail. I also want to paint an ongoing picture in words of what life is like for us and for him, what I’ve learned and am learning about this set of issues, how that all reverberates inside my brain. These essays are the heart of the site.
A near-daily log. I began keeping a log of Damian’s activities when he turned two. It started as a fond mom’s "isn’t he so cute?" exercise, but post-diagnosis it switched to a detailed account of his progress and detours and some of what his therapists do and say. It’s filled with anecdotes but I mostly wrote it for myself. I discontinued this in early December 2002.
Personal essays on just about anything else. Because there’s more to life than motherhood. I discontinued this in October '03 when I began a separate blog.
I post in my blog a few times a week about everything but autism (though that sometimes creeps in too because everything in life is interconnected and also because short entries work better in a blog). There you'll find cute kid stories, parenting issues, but also discussions of my writing and life and thoughts.
I currently update the essays about Damian and autism approximately once a month as the mood/need strikes. The rest of the site stays up for archival purposes. If you want to know when I add a new essay, feel free to join my notify list.
If you're wondering about the journal title, Hidden Laughter, it's a quote from the T.S. Eliot poem, Burnt Norton, part of his Four Quartets (which, as it happens, was the subject of my senior thesis in college). This passage caught my heart: "the leaves were full of children,/Hidden excitedly, containing laughter," and later the same image recurs: "Even while the dust moves/ There rises the hidden laughter/Of children in the foliage." I love what that image evokes. It fits.
A final few caveats: I'm not an expert in anything except my own son. There are plenty of people out there who know more about autism, about Floor Time, about child development than I do. I simply want to share our story as it unfolds.
Also, I'm mostly upbeat about Damian's progress and prognosis. I'm no Pollyanna, but I've felt an intense conviction from the get-go that he would improve immensely and this journey will have a positive outcome. So you won't be reading as much fear and doubt as you might expect, though they've certainly made guest appearances in this journal and I'm sure they will again. But most of what I feel is a profound sense of wonder that I can watch a child get better before my eyes, and that I can contribute to that process. It's hard to have a kid on the spectrum, no doubt about it. Sometimes downright painful. But the joy is also more intense, and that's what I mostly focus on here.
list of questions / floor time / who's who / glossary / links
copyright 2002 Tamar