Not done yet
5 July 2006

First, welcome to everyone coming here from my essay Facing the Moment of Truth on the Autism Speaks site. This journal you're reading right now, Hidden Laughter, has been an ongoing in-real-time look at the process from pre-diagnosis to, well, now. Feel free to look around a bit. The essays around the time of diagnosis begin here, in late January 2001. Our primary intervention approach has been the DIR/Floortime model, which I discuss a bit here.

The odd thing about where we are now - about where Damian is now, I should say - is that you can define it using such radically different tropes. He's come such a long way. He can fit into a mainstream classroom and keep up with the work, even excel (he's above grade level in both math and reading, for instance). He has friends who greet him with huge smiles and great big hugs. And he has a big heart, too: when I stopped by school recently, a teacher told me that Damian always comforts other children and has a lot of empathy. He shows a lot of emotion in his face, the teachers tell me. He laughs a lot. Enjoys his classmates and his friends. At home, he cracks jokes, teases, acts silly, pouts, cajoles, argues and negotiates.

Sounds good, right? Great, even. And yes. It is. He is. Wonderful, yes.

And yet. There are still gaps. Maybe that's just part of what makes him different, makes him who he is. We all have quirks in our neurological makeup, weaknesses to go along with our strengths. When is it time for us as parents to say, "Enough, this is who he is and it's sufficient, he will continue to grow but no longer with such intervention, such intensity; enough, we're done"?

Not yet.

It's those gaps. They haunt me.

Other children are still much more fluid in their responses, quick in their reflexes, comfortable in their social world. Other children can focus more easily, intuit more readily, understand and interact in a more complete way. Occasionally Damian can keep up with them, sometimes his brain fires rapidly and works beautifully. Other times, not so much. And I think he knows this and therefore holds back, preferring to follow rather than lead, to limit himself in his interactions, and yes, sometimes to retreat rather than engage.

So I made an appointment for a consult with Serena Wieder, the co-founder of the DIR (a/k/a Floortime) treatment model we've embraced these past five years. Friends kept asking us why. Was there something wrong? Something we weren't saying?

Nothing wrong, no regression, no great big red flags shouting WARNING! Just… Damian. Still growing and changing, yes, but not enough. Now that he's no longer in a Floortime setting, now that we're away from that community and he's grown past much of the beginning stages, we've felt cut adrift, unsure how to proceed. How to help him move forward.

So my mother came down from Nova Scotia and we piled in the minivan to drive down to Maryland for a visit to the Smithsonian and a three hour consult with Serena the next morning. Walked out of there stunned and a little overwhelmed but also excited. Because there is more to do, yes. A lot more. But that's good. We're not done, and that's exhausting to contemplate. But he's not done and that's thrilling to consider.

Some things she said:

He has beautifully mastered the first five emotional milestones delineated in the Floortime approach (self-regulation, intimacy, two way communication, complex communication and emotional ideas). He's now stuck in the sixth stage: logical thinking. People often see a child playing imaginatively and think he/she has mastered this, but look closer. Check to make sure.

Damian, for example, comes up with fantastic ideas, creative and clever. But ask him to tell you the goal of the story he's playing and he looks at you like you just turned purple and grew wings. It's not part of his creative vocabulary. He can discuss cause and effect in real life, in a scientific or right-brained scenario, but he can't build it into his play. His thinking isn't flexible enough, isn't comprehensive enough. Not yet.

So now we have to get back on the floor with him, play out imaginative scenarios. How did this rocket ship end up at this castle? What does Mr. Red (Damian's current favorite toy, a small Lego man) want there? What's going to stop him from getting it? How does he get past that obstacle? Basically, working with him to develop overall concepts of beginning-middle-end, thinking things through, seeing consequences and branching outcomes. Real life thinking.

Sometimes it's hard to sit down and play, so we do it in real life too. "Why do you think that man just jumped into the lake with his clothes on, Damian? What do you think he's going to do?" "Oh, you want to go straight home after camp? Give me a reason. What will you do once we get there?" And, "What was your favorite part of the movie?", "Favorite thing you did in school?", and of course "Favorite part of the day?" Asking him to remember, to weigh, evaluate. To think deeper, more completely.

She also saw some still-present neurological weaknesses to address. Visual-spacial ability, upper body tone, auditory processing. Processing speed in general. Sometimes if you ask him a question, you will grow ten more gray hairs while waiting for his answer. Sometimes if he's telling you something, he'll stop in mid-sentence. Just pause. For long moments. And then continue. It's a kind of stuttering, not of the tongue, but of the mind.

We can do things at home to address all of these. We can also take him to specialists, get tests, seek therapies. We plan to do all of the above. Focus on sports for the upper body strength and also for timing and sharpening his visual-spacial ability (not so easy to catch a ball if you have trouble seeing it come at you). Games to focus on visual-spacial acuity (he has trouble seeing the whole board in Othello, for instance). Lots of play dates so he can learn more about how other children operate. Take him to see an audiologist to check for and possibly treat an auditory processing dysfunction. Take him for a developmental opthamology exam. Maybe a 24 hour EEG to check for a potential medically-treatable condition (ugh). Interactive Metronome later on. But mostly talk, challenge, play, interact.

We're seeing progress already; his thinking is becoming more fluid, though this is not yet fully integrated in his brain, and if we pull back for a few days, he loses his newfound ability. If we slip, he slips. But a few months ago he was having tantrums daily, complete with yelling, screaming, throwing things, and an inability to downshift to normal anger. Since we got back from Serena's and began working on this new level, his outbursts have decreased dramatically. He needs this. He feels less out of control with this. This is good.

It's hard, though. When school's in session, there's so little time. School's out now; he's in camp just for the mornings and just for July. In a way, we're back where we started five years ago. Dan's on a job all summer. Now I have one too. Yes, I will continue my writing career too, but my main task this summer is working with Damian, helping him develop.

It feels strange to be plunging back in so intensively. After five years, haven't we done enough already?

No. Not yet.

Last month, Serena Wieder said to us, "He's clearly come a very long way and you should be proud." But she also said, "He has a lot of potential and could go much farther."

We can't turn our backs on that. We won't.

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