Are you a runner? We’re looking for people to join “Team Sacha”, either to run the Hastings Half Marathon with us on 29 March this year or to take part in other events. More below.

Have you donated to Sacha anonymously via JustGiving, without meaning for it to be totally anonymous? We have no way of knowing who anonymous donations come from, so please drop us a line to let us know who you are, unless you really want to keep it secret!

It’s been quite a while since we last sent out an update. After Sacha’s last bout of intensive therapy, we returned just in time to drop into a rainy, extremely busy autumn and a country focused on a general election. We’ve had little chance to catch our breath and think about where to go next.

Sacha’s gross motor skills have continued to consolidate what he learned in the last year of intensives at NAPA. He walks with increasing confidence, sometimes picking up quite some speed or covering fairly long distances, and he especially enjoys pivoting on the spot. We’ve also finally had a breakthrough with crawling, which he can now do over short distances—particularly when motivated by food.

Although it might seem counterintuitive to focus on crawling after walking, this is something we always aimed to achieve, since crawling in infancy has known benefits for neurological development: to put it simplistically, since it engages all four limbs in coordinated movement it helps to link everything up. It was in fact our first goal at NAPA, but due to the weakness and hypotonicity of Sacha’s core, physiotherapists reasoned that walking would actually be a more achievable goal in the short term, and that this should help to develop the capacities that would be needed for crawling—tackling the problem from the other side, in a sense. That judgement proved right, and crawling gradually came within reach in the last few months.

From fingers to hands

The beauty and strangeness of child development can really hit home when one struggles with it, and with Sacha we have come to appreciate just how important a coherent “body schema” is in particular. He has always struggled to use his hands for anything other than eating, even though he is quite capable of twisting his fingers into all sorts of shapes. Sacha’s Walden therapist, Mary Jo, gave us the remarkable insight that hand-integration can proceed lopsidedly—so that one really is, in a sense, “all fingers and thumbs”.

Most hand-use actually involves the palm in surprisingly active ways, and having never crawled or done anything much else with his hands, Sacha had never developed a properly integrated sense of them as wholes. We thus started to pointedly stretch his experiences of weight-bearing on his hands, and like magic, within a few weeks he was beginning to engage manually with toys, more or less for the first time: he now had hands rather than just fingers! There is still a long way to go on this level, but we have a start, and hopefully the crawling will help things along.

Next steps

Sacha is now quite fascinated with stairs and escalators. He desperately wants to be able to take a step up, but so far his loose knees have kept this out of reach, and probably will continue to do so for some time. He is also still unable to get himself up into a standing position, or come down properly from standing to sitting, despite focusing mainly on this in our daily home programme for much of the past year. He’s clearly going to need some input on the neuro-physiological level for a while to come, and thus we will be taking him back to NAPA in September.

But now that Sacha has some core gross motor skills under his belt, the clearest barriers to his development are on other levels: he is still prelinguistic at an age when other toddlers are speaking in sentences, and the lack of experience in play remains likely to leave its mark in intellectual disabilities. So, we’re trying to focus more now on therapies that target these levels. Thus, in addition to what we give him at home, we’ve started giving Sacha weekly sessions at the MAES Therapy Centre in London, focused on developing a capacity for problem-solving, and we’re looking at taking him back to the Floortime Centre for an intensive later this year.

The fundraising thus goes on. We’re still seeing some remarkable, moving generosity. All donors most definitely have our thanks—but please be aware we can’t always see who you are! Consider dropping us a line to let us know if you didn’t mean to be completely anonymous.

A team of runners will be running the Hastings Half Marathon on 29 March this year—we have four already—let us know if you would like to join us! We also have Callum Cant doing a 50-mile ultramarathon along the North Downs Way, and are looking at further events. Meanwhile, the legendary Jackie Chase at Under the Bridge, Brighton continues to fundraise with the local community.