Last push to cover Sacha’s next round of therapy!

Sacha’s first crowdfunded intensive intervention at the NAPA Center got him standing for the first time. His second got him walking. The next round starts next week (we’re almost there, and currently doing a final push to cover it). What can we hope for this time?

To most people who know Sacha, he’s a delightful little individual, constantly laughing and smiling. He’s definitely “a character”. It can be easy to miss that he barely uses his hands for anything other than eating, and that he doesn’t play or really try to communicate beyond the most rudimentary signs. While he is very interested in people, he doesn’t really know how to relate to other children, who are normally more boisterous and dynamic than he can manage to be. What’s more, he has no interest in toys or a more practical engagement with the world.

It is hard to establish the exact cause of such things, or to derive them from specific missing genes. As Vygotsky understood almost a hundred years ago, child development doesn’t generally work like that. Only rarely are there singular, isolable causes; the rest of the time you just have to try to see the whole person in formation. More recently, geneticists and developmental biologists have started to realise that even individual cells are much like that too.

But there is no doubt that the large chunk that is missing from Sacha’s DNA has taken its toll. It has made development an uphill struggle, from the most basic sense of bodily self-awareness and movement. If you struggle to activate your muscles and feel through your joints, it’s hard to have much of a coherent sense of your own body in space. And if you don’t have that, how do you go about learning through play in the way that kids typically do?

Sacha’s jolly, warm character doesn’t fit the common stereotype of the autistic individual. But autism is something closely associated with 2q37 deletions, and autistic kids often have similar developmental difficulties to those that Sacha is struggling with. “Autism” is a wide and problematic category, and it may make more sense to think in terms of a continuum of developmental disorders, across many different dimensions—not just social, emotional and communicative, but also motor, cognitive, sensory. Sacha’s difficulties involve a complex mix of all these dimensions. For this reason, specialist therapies that are ostensibly targeted at autism may also be beneficial for Sacha.

Since we got Sacha’s diagnosis, we’ve been researching child development and the many different kinds of paediatric therapy available. One approach that has stood out in all this as plausible, scientifically credible and potentially relevant to Sacha—specifically on the levels where he is now most blocked—is that developed by Stanley Greenspan. This method aims to work specifically on interactions and communications, to draw the child into more complex patterns of participation and play. It’s often used for autistic children, but can be relevant to other kinds of developmental disorder.

A slot has come up last minute at the Floortime Center—the main place for Greenspan’s method—in the weeks before Sacha’s next NAPA intensive, and we have decided to book it, as it should complement what we will be working on at NAPA. We can also do it relatively cheaply, since a friend coincidentally lives nearby and can put us up for free. Our great hope for this trip is that the combination of occupational therapy and speech therapy at NAPA, plus the Greenspan approach, will enable Sacha to start playing for the first time.

Thanks to generous help from Sacha’s supporters we’ve covered the costs of the NAPA treatment. We’re now just doing a final push to see if we can cover the intensive intervention at the Floortime Center too.

We don’t expect the same people to keep contributing for each new round of treatment—we have already been blown away by the solidarity and support multiple times over, and it has made such a difference. But please do help us to keep the momentum going by circulating this campaign as widely as possible and coming up with ideas for fundraising events.

It’s easy to organise an event—a sponsored run, poetry-off, reading or whatever—through the JustGiving page (just click “Start Fundraising” and go from there). We already have Laura Palmer running the Newick Will Page 10k for Sacha, and a couple more events in the pipeline.

Finally, we leave you with Sacha dancing to the great children’s singer-songwriter, Raffi, who has supplied the soundtrack to Sacha’s daily physio and occupational therapy since we got the diagnosis. Despite the strains of those daily sessions, Sacha still loves his music.

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