Highs and Lows

Since we started this process, I’ve become better at a number of things. Baking without using grains, for example. Compartmentalizing and exploiting every minute of my day, and then squeezing out some extra minutes. Popping a pill into a toddler with a single motion, capped with a boop! sound. Talking a wide circle around the topic of developmental delay when someone asks about Martin and I don’t care to reveal his condition.

I’ve made progress in some less obvious areas, too. One of those is weathering the highs and lows that come with autism recovery.

In the early weeks, I was a mess. When we switched his diet and started the supplements etc., Martin made such progress so fast that (despite warnings to the contrary) I envisioned a straight, steady trajectory from autism to neurotypicality. It wasn’t long before the bad days started coming, though—days when he would not (or could not) respond, when he screamed with every diversion from routine, when he spun in circles and walked on his toes. I really, really let those days get me down. It seems like we haven’t made any progress at all. Is this regression? Are we going backwards? Are the treatments hurting him? My optimism ebbed and flowed with every change in Martin’s mood. It was also the most difficult time on the learning curve; Martin’s diet was ultra-restricted, and I felt like I’d never get the hang of measuring and administering all the potions, not to mention scheduling and attending endless “Track One” doctor appointments. I became frustrated and snippy. I pitied Adrian for having to put up with me.

By the time we’d managed the first couple months, I was better able to accept that the trajectory to neurotypicality is indeed constant, but also jagged. Yes, Martin has bad days. Now, however, they are reminders of how far we’ve come. When he engages in a behavior I haven’t seen in weeks, such as running circles around our freestanding staircase while strumming a toy guitar, I remember when he used to do it several times a day and thank my lucky stars that it has mostly disappeared. In fact, after the first couple months, even our worst days were better than our best days in January, before the interventions. Besides, I’ve noticed that bad days—and, especially, bad nights—often herald breakthroughs. Martin will wake at 1:00 am, toss and turn for three hours, then sleep in and rise with more sentences then he’s ever spoken. So, in general, I’m serene.

This week has tested that serenity and the confidence that accompanies it. Today marks the sixth day in a row that Martin has had no attention span whatsoever. This morning Adrian tried to do his usual 30-minute RDI with Martin and managed only eight minutes. (Adrian later confessed that the experience left him feeling dejected, which did little to help me.) Martin had an appointment with his craniosacral therapist, typically a 60- or 75-minute affair. She gave up after half an hour. Martin just is not fully with us. He’s been self-stimming, obsessing over toys, and spending time alone in Martinville. This is the longest period I can remember of seemingly stalled progress.

It’s hard for me, to have a full week this way. Here are a few factors nevertheless buoying me:

First, despite the lack of attention, Martin has done remarkably in other areas this week. His speech is great, with original thoughts left and right. We can actually hear the thought process as he speaks; upon seeing a bare-chested man in the park, Martin announced, slowly, “That boy is wearing a shirt . . . no!” And he’s engaging in more interactive play than ever. In addition to chasing a couple of girls he knows, and letting them chase him, yesterday he initiated play with a boy he didn’t know. We’ve never seen that before. Samara (nanny) was excited as could be when she brought Martin home.

Second, I’ve been theorizing about why Martin’s attention might be off, and this morning the craniosacral therapist, Diane, said something that confirms what I’ve been thinking. Martin has a lot going on, Diane said. He’s making strides in language and play, he’s dealing with a changing body (his muscle development appears to have caught up with neurotypical toddlers, his physical therapist has mentioned), and his systems are strengthening (his recent fever, I think, confirms this). On some level, the progress is over-taxing him. His attention span is taking a break to deal with it all. We may just be on the verge of something big.

Diane didn’t actually say that last part, about being on the verge of something big. I added it—just one more way to get myself through the day.

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2 thoughts on “Highs and Lows

  1. Pingback: The Marvelous and Amazing Napkin Hand-Off | Finding My Kid

  2. Pingback: HANDLE this! | Finding My Kid

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