It has been 3 months since we last posted about Sacha. These were unavoidably some of the busiest months of our working lives, and on top of our jobs it was all we could do to manage Sacha’s many appointments and keep his daily therapies going. Every morning we have given him 1–2 hours of physiotherapy and occupational therapy, using skills that we learned in his first NAPA intensive in November, as well as from the Bobath Centre in London and our local NHS therapists. Several times a week we have given Sacha Waldon therapy, under the benevolent guidance of Mary Jo Middleton, one of its leading practitioners. We’ve had weekly music therapy from Tina Warnock at Belltree, kindly supported by Jessie’s Fund—which has been a joy for Sacha. There has been weekly Conductive Education from Whoopsadaisy, an invaluable charity-funded local service for children with motor disorders. And we’ve given Sacha two mini-intensives at the Parent-Infant Centre in London. All of this is on top of the multitude of NHS appointments and the essential services provided by our local Child Development Centre.
This intense bloom of therapies was the product of the initial months in which we took stock of Sacha’s diagnosis and began researching and fundraising. Everything suddenly blossomed all at once, while we were grappling with two intense workloads. But it has been worth it. The remarkable gains of Sacha’s first crowdfunded intensive at NAPA have continued to unfold: in our “home programme” we have seen him go from starting to stand freely at NAPA, to increasing confidence in standing, to beginning to take supported steps, and finally—when he is feeling especially bold—to taking the odd steps here and there on his own. As his NAPA therapists predicted, this has also developed his core enough to bring crawling within reach. Sacha is thus finally on the brink of becoming mobile—a development which promises to transform his relation to the world at large in ways we can’t fully predict. Last summer he was completely immobile, barely able to use his hands, greatly delayed in relation to “normal” child development, and spending much of his time in a distracted, withdrawn state—which several professionals who have worked with him regarded as “pre-autistic”. He is now a socially-engaged little character, learning his first lessons in how to venture out into the world.
This is the context in which we have just started Sacha’s second crowdfunded NAPA intensive, this time in Boston.
The first thing we are struck by on returning to NAPA is just how coherent and clear-headed their approach to pediatric therapy is. We have spent most of the scattered fragments of free time in the last few months scrambling to give ourselves a basic education in child development and the various therapeutic approaches to it; genetics, neuroscience, developmental biology, “defectology” (the quaint Soviet term for the study of disability), special needs pedagogy, and so on. The parent who suddenly finds themselves thrown into the “special needs” world confronts a welter of disorientating information—hence the pun in the name of the essential local charity for disabled kids and their families, Amaze. Since child development is a mysterious and beautifully complex thing, the therapeutic options segue easily from common sense to quack, and one can never quite say with absolute certainty what works and what doesn’t. And there is of course a mass of possibilities available, when one starts to look.
The novice parent thus needs quickly to develop some orientation. As a couple of “intellectuals” we’ve approached it the way we know best, sketching provisional maps of the territory, familiarising ourselves with the main landmarks, and then setting about comparing them. One day we will probably write it up properly. But in the process a number of coherent themes have emerged which are directly relevant to Sacha’s situation: the inextricability of cognitive development from motor, sensory and affective development; the importance of movement and bodily integration in creating an experiential world in which one feels one has a stake; the importance of play in cognitive development; the necessity of fine motor control to play; the dependence of fine motor control on gross motor control; the role of the core in forming gross motor capacities, and so on.
Despite their disagreements, the most insightful moments of most of the material we have read seem to converge on one rough picture, which cannot easily be captured in a few words. But to make a stab at it: one of the main consequences of genetic disorders like Sacha’s is a profound weakening in the capacity of muscles and nervous system to work coherently. This affects everything from the ability to move, to thinking and feeling—even anatomy (Sacha has misshapen kidneys, and things like heart abnormalities are common in kids with this syndrome). There’s not much one can do about the genetic level itself, but what is important is the developmental outcome of this, and with the right focus one can do a lot here.
This sort of focus is what we find at NAPA: a lucidity in thinking about how one builds up from the bases of motor, sensory and social abilities to begin to enable the finer-grained of human capacities to develop. In practice, this means giving Sacha intense bursts of movement—swinging, spinning, bouncing—to bring him into his body; challenging his sense of his body’s position in space by placing him off-balance; getting him to repeat patterns of bodily movement so that they gradually become second nature; drawing him into patterns of social interchange where he gradually discovers his own agency in affecting what others do…
It is, in many ways, a beautiful, exhilirating and exhausting process. And this is what happened to Sacha during session 3 of 4, in the morning of his first day: