It’s a week since we returned from Sacha’s third intensive at the NAPA Center. We’ve held back on writing it up until now partly to see how he would integrate what he has learned, as this period after an intensive can be a crucial one, when the big shifts actually occur. In the days immediately after getting back from the first intensive he was standing independently for longer and longer each day, and the day after the second ended he started taking steps for himself. There aren’t many milestones as straightforward as standing and walking, so this time we had a broader focus, and the shifts too will be a little more diffuse. Yet with this more holistic approach to Sacha’s development we have seen perhaps the most dramatic changes so far. Sacha has returned from the US more like a toddler and less a baby: more assertive and communicative; more motivated to move around under his own steam and explore the world; more interested in experimenting with different ways of moving his body. We can start to see an independent-minded little individual emerging who will hopefully one day be able to play in a park with other children.
We began the trip this time with another kind of intensive: two weeks at the Floortime Center in Maryland. The Floortime approach was developed by the pediatrician Stanley Greenspan, and focuses more on communicative and social levels, building upon the child’s own initiative rather than simply showing them what to do. It is widely respected and considered one of the modalities of pediatric therapy best-grounded in research. Our intention was to focus on aspects of Sacha’s development that aren’t directly addressed by the more physical approach of NAPA: his lack of engagement in play and the difficulties this leads to in establishing more complex kinds of social interaction.
We had already read some of Greenspan’s works, but had struggled to find ways to use the method with a child who has almost zero interest in interacting with toys. For us, the great lesson of this intensive was in discovering richer ways of creating playful interactions with a child who is still in what Piaget called the “sensorimotor stage”—which is to say, still mastering basic bodily movement and the integration of the senses. We focused on activities that Sacha would find stimulating on this level—spinning, swinging, bouncing, splashing, rummaging through a sand pit, stealing glasses off a friendly face and so on—and used these as the basis for meaningful interactions. Sacha had a lot of fun doing these activities with some very talented therapists. Here he is with Jake Greenspan:
Jake has a remarkable knack of tuning in to exactly what is going on with a kid at any given moment; within minutes of meeting Sacha he had perceived for himself the difficulty of working with toys, and the need for another approach. Jen Campbell, an occupational therapist at Floortime, had a rare ability to catch Sacha’s attention and draw him into sensory play. John Balsley, a specialist on the relation between visual perception and cognition with a background in the Piaget tradition, brought into the mix activities with a visual tracking aspect…
We learned from Jake the amusingly simple trick of pretending to be unable to do something in order to get the normally passive child to complete the action. So, as far as Sacha is concerned, mummy and daddy are completely incompetent at opening the little pots we put his breakfast fruit in, and he now often confidently volunteers himself for the task. We learned to halt actions unexpectedly, so that Sacha will fill them in—completing a clapping gesture for us, or yanking at a hand poised pre-tickle. Sacha came away from Floortime seeming more alert and socially engaged than before, leaving us to wonder how he might do if we were able to give him this sort of focused engagement on a daily basis.
After Floortime we gave Sacha a week to recover before heading to LA for the third NAPA intensive. It was great to walk into that place after nine months and see all the therapists again who had worked with Sacha on his first intensive, and to show them how well he is doing with his standing and walking—largely thanks to NAPA and the home programme they gave us. It must be heartening for them to see such results from their work. We agreed right away it would be best to focus on the main obstacle to functional movement that is still in Sacha’s way: transitions between lying or sitting and standing. With their loose joints and neuromuscular difficulties, kids with 2q37 deletions typically find it very hard to get themselves up, and Sacha is no exception. In addition, we would focus on weight-bearing through his hands and arms, with a view to crawling. And in the speech sessions we would concentrate on extending Sacha’s focus, engagement and range of expression.
A core part of NAPA’s approach is CME, which involves a system of hand-holds as well as arrangements of boxes, planks etc, which enable therapists to get kids into positions that would normally be difficult or impossible, and in which they can start to build up the neuromuscular bases to be able to move for themselves. This is how Sacha has learned to stand and walk over the past year, and this time we used CME to work on improving his mobility. But with Sacha a bit bigger we were also able to start using the NeuroSuit for the first time. Descended from special suits worn by Soviet cosmonauts rehabilitating to life on Earth, the NeuroSuit increases body awareness, helps align the limbs, and provides extra resistance to help kids with low muscle tone. In and out of the suit, Sacha would work on transitions between sitting, lying and standing, bending and crouching down, weight-bearing on his hands and arms, falling with confidence, and upper-body strength exercises.
We also worked on giving Sacha skills he can use in the playground—climbing a climbing frame, walking up steps, wiggling down a slide. These skills felt a long way off to us, and we were surprised that they could be considered at all at this stage, but the therapists at NAPA have a striking ability to see which challenges are just within reach (a crucial skill in pediatric therapy, as Vygotsky recognised almost a century ago). It will still take a lot of work on our home programme to get Sacha there, but it’s incredible to see these things start coming into view.
Finally, in his last week Sacha did some sessions on a Galileo: a device somewhat like the vibration plates one finds in adult gyms, but with a side-to-side motion instead of up and down. The Galileo stimulates the “fast twitch” muscle fibres, to help with neuromuscular development. Sacha found this quite hypnotic, but was disconcerted by the way the blood would rush to his muscles as soon as the machine stopped, leading to intense itching! Here is Sacha’s first go, with the inventor Harald Schubert explaining the principles of the Galileo:
NAPA’s model of intensive intervention really is on the leading edge, and of the many approaches we have tried so far it is by far the most effective at tackling Sacha’s condition head-on. Since we got back, Sacha has been much more alert than before. He has been spontaneously trying to incorporate things he learned at NAPA, bending down to pick things up off the floor, trying to lift his foot to take a step up a staircase. In the pool, when the gravity is eased, he swims to the steps to practice the transitions between sitting and standing for himself. His intention to move is getting much stronger and he has started to walk off and explore on his own. It now seems reasonable to think that, with the home programme we will be pursuing over the coming months, we can get Sacha to a stage where his initially faltering steps will become the more fluid movement of the toddler at play.
Sacha’s third intensive at NAPA brings to an end the programme we started fundraising for a year ago. The goals we set have mostly been achieved or surpassed. We haven’t succeeded uniformly: Sacha still can’t really crawl. We’re still working on this, as crawling is good for brain development, but it is very hard going with Sacha’s hypotonia and the difficulty he has weight-bearing on his hands—and there is less motivation now he can walk. Also, Sacha still doesn’t use his hands much for things that require fine-motor control, like conventional toddler play. Sacha’s big successess have been in gross-motor development—standing, walking, splashing around in a pool—and social development: he is a charmer and a flirt who has a talent for making people laugh. He is particularly skilled at soliciting cuddles when there is something he doesn’t want to do. These are a great basis for further development, and it would be so much harder without these achievements. But the big struggles are probably to come.
We’re thus aiming to continue with NAPA for the next year. We have booked in for next September, and are trying to get in at Easter. As NAPA’s reputation spreads internationally, it is getting harder to secure places—most slots have long waiting lists, and they are struggling to keep up with the demand, opening new centres as quickly as they can. But one way or another we will keep trying to use CME to help Sacha along, as well as the many other techniques and ideas we have learned from NAPA therapists. We will also continue incorporating the lessons from the Floortime Center, alongside the Waldon, music and other therapies Sacha gets at home.
So, we are now restarting our fundraising campaigns to cover the year ahead, with a new fundraising page and some events coming up. If you have any ideas on ways to help fundraise, please let us know. Beyond direct donations, the following have recently raised funds for Sacha:
- our friend Laura Santer’s sponsored run
- a “Strawberry Fair” organised by Under the Bridge, Brighton
- a “splashathon” at our local gym, David Lloyd
- a song recorded and sold online by Brighton College students
- a launch event for the poetry collection We Do Not Believe in the Good Faith of the Victors
- a cocktail evening