In Hope, Acknowledging the Despair

Remember last week’s post so long it required subheadings? Remember the subheading “Whence My Anxiety?” and how I described the City Kids Club rejecting two-year-old Martin? Remember yesterday’s post, which was a follow-up to the post so long it required subheadings? Okay. This is another follow-up to the post so long it required subheadings, and specifically a follow-up to the “Whence My Anxiety?” section.

Done with introduction/explanation. Thanks for your patience.

It was summer 2010, around Martin’s second birthday, when Adrian and I realized something was “off” with Martin. If you read this blog, you probably don’t need details about autism’s warning signs: lack of attention, inability to follow simple directions, nighttime wakefulness, daytime exhaustion. In September 2010, an old friend of mine, an Early Intervention provider, traveled from my hometown to the City and helped us complete an M-CHAT (modified checklist for autism in toddlers) questionnaire, which she evaluated. (As it turned out, my friend didn’t really need the M-CHAT. After ten minutes just interacting with Martin, she knew that he almost certainly had autism.) By October 2010, we had begun the process of formal diagnosis and enrollment in EI.

I remember autumn 2010 as a time of Martin not really regressing, but slipping. The symptoms moved from “something off” to “obvious.” He lost all eye contact. He no longer responded to his name. His communication skills stopped developing. He drifted the perimeter of our apartment, dragging his fingertips along the wall as he hummed to himself. What we’d once called Martin’s “happy dance”—running circles around our open staircase when Samara arrived—became instead a self-stimulatory ritual beyond his control, ever more circles, ever longer, until finally he’d collapse into a lethargic slump and spend the next hour on the floor, pushing a toy back and forth.

We began changing Martin’s diet in January 2011, and started biomedical interventions in February. The initial progress was so swift that I thought we’d be done with autism within a year or two. Within months, Martin was sleeping through the night, and we the first seeds of functional, i.e., non-echolalic, language were sprouting.

For September 2011, seven months after we started biomed, we were able to secure a spot in one of the City’s preeminent special-needs preschools. Stop your giggling. It’s New York City. We compete for special-needs preschool placements, of which the City has far too few. Martin was placed into a bilingual (Spanish/English), 12-1-1 (12 students, one teacher, one assistant teacher) classroom. It was a stretch, we knew. The instructors from Martin’s EI center said he needed a smaller student-teacher ratio than 12-1-1. Adrian and I figured, however, that Martin was getting better, and that soon he would be able to function in the 12-student class, and that in any event, the only spots still available in preschool were in the bilingual, 12-1-1 setting. So we took the spot, with gratitude.

From the beginning, Martin’s classroom teacher reported problems. The other kids could follow one-step directions, at least, and already were learning to cut with safety scissors. Martin followed no directions and melted down when it was time to transition activities. The other kids were fully toilet-trained, or well underway toward that goal. The other kids could watch short films. The other kids could walk to the classroom by themselves. Martin—Martin was himself. Very soon we began to hear murmurs that Martin might need to change classes.

The hammer fell a few months later. Adrian and I were called to a meeting with the teacher and administrators. Martin could not handle a 12-1-1 classroom. Fortunately, the school now had a spot available in an English-language, 8-1-2 classroom (eight students, one teacher, two assistant teachers). Martin would be moved slowly, spending short periods of time in the new classroom, and then half days in the new classroom, and finally saying goodbye to his 12-1-1 friends.

Martin’s removal from the 12-1-1 classroom ranks second in the painful moments I’ve experienced on this journey, behind his rejection from the City Kids Club. To be sure, the 12-1-1-to-8-1-2 classroom move is a distant second. The preschool wasn’t kicking Martin out; they were thoughtfully placing him in a setting to meet his then-current needs. And I was more prepared. I’d had weeks to internalize this possibility, and didn’t even need to reach for the tissue box someone had put on the table at our meeting. Still, the decision forced me to acknowledge that Martin’s recovery was not going to happen as fast as I’d thought, and that after the rapid initial progress, his improvement had slowed. His needs were still great, more extensive even than the needs of most preschoolers in special education.

Also on the Top 10 Most Painful Moments List? Touring private special-education elementary schools, trying to find an appropriate kindergarten placement for Martin, and hearing repeatedly that while dyslexia, learning disabilities, dyspraxia, &c. were acceptable, children with “autism and other global delays” should not bother to apply. Let’s not go there, this post.

I was already blogging when Martin changed preschool classes. I didn’t write about the event, at the time, because it was too painful. Later, when autism’s grip had loosened a bit more and I was feeling better, I decided to write about it. I meant to write about it. But I didn’t. For whatever reason, I still couldn’t get there.

So what’s going on now? Why am I dragging these dark moments onto the internet for all to read?

It’s because of hope. Martin right now is living a bold season for recovery. Language, good. Sleep, good. Health, good. Attention, improving. Socialization, improving. Physical skills, improving. I am surfing an wave of hope. Full recovery seems more possible than it has in years. More possible, maybe, than since the 12-1-1-to-8-1-2 switch.

I might regret reviving, here on the blog, our journey’s lowest points. Wind, you can have my caution. I’m overjoyed for the confidence to share.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s