We got back from our second trip to NAPA last weekend, but held off sending an update as we were anticipating a leap from Sacha. We spent three weeks working with a team of therapists in suburban Boston, helping Sacha to strengthen up and develop the relevant neural connections, in all the areas necessary for walking and crawling. It was an exhausting and emotional time for all of us: as he approaches two, Sacha is developing some of the emotional complexity of the toddler, as well as a major sense of frustration at his own developmental blockages.
This sort of thing can become a significant part of the problem that therapeutic treatment needs to grapple with in children with actual or potential disabilities, as developmental psychologists have recognized since Adler and Vygotsky. Thus, in our time at NAPA we yoyoed between remarkably bold little steps and tantrums, with a need for soothing one minute and motivation talk the next, trying to chip away at the mental block Sacha had developed around moving. With great patience, day after day, Sacha’s therapists stretched his capacities and got him into situations which only his bizarrely over-developed sense of balance could turn into a static stance.
Indeed, his standing balance seemed to have become so good through the exercises learned on our first NAPA trip, that he had become capable of circus-esque feats completely unlike those of a typical pre-toddling toddler. One of Sacha’s therapists, Katie, even resorted—terrifyingly—to putting him on little stilts in the search for something that would actually challenge his vestibular system. The problem was, whatever we tried, this remarkable sense of balance was still being used to avoid moving! And movement is what is needed to really usher Sacha out of babyhood finally and into the world of the toddler.
But a fundamental part of the process is the time that the child gets to consolidate what they have learned, and experiment with their new skills. With our first NAPA trip, although Sacha had made the impressive shift to free-standing in our time there, he could still only hold himself up quite briefly at the end of his treatment. Then over the days and weeks after this, his capacities just ratcheted up and up exponentially until he became capable of free-standing indefinitely.
We thought something similar might happen this time, and we weren’t wrong: the day after we got home, Sacha took the few independent steps we had been trying to elicit for the previous three weeks; the day after that he took a few more, and so on. Now, a week later, he is walking himself across a room and back, slowly but surely, with stable hips and a careful gait quite unlike that of the typically-developing child learning spontaneously to walk. The hundreds of hours of CME (the dynamic form of paediatric physiotherapy that NAPA specializes in) and other physiotherapy seem to have laid down the neuro-muscular patterns which are now becoming internalized as Sacha drives himself forward, for the first time both deciding where he wants to go and getting there under his own steam, to look at his favourite music videos or to seek out a cuddle with his parents.
As with any toddler, it will take some time before toddling becomes the completely self-confident walking and running of the child. And in Sacha’s case it will probably take longer, due to the severe hypotonia and loose joints that make coordination harder and falling always more likely. But what is important is that all this is now in process. And being able to move about the world for the first time should hopefully bring that world alive for Sacha in wholly new ways, since—in Geoffrey Waldon’s words—“meaning comes from movement”.
The major challenge now is to bring to life Sacha’s practical engagement in play, getting him to really explore the world with his hands. Through that come many of the possibilities for cognitive development, and thus our hopes for avoiding a genetic quirk turning into a major disability. The remarkable progress we’ve made over the last few months on the basis of these crowdfunded NAPA trips gives us a good basis for optimism.