Sacha can now climb stairs!

We recently got back from Austin, Texas where Sacha completed his fourth NAPA intensive. Getting to NAPA this time around was so much more complicated than usual, due to the Covid-19 travel restrictions and safety measures, but we are so glad we made it! After eighteen months with barely any services or support, it was a really emotional experience to be there again, as it highlighted just how much time was lost during lockdown, and the various regressions this caused for Sacha—especially in communication. But it also put into perspective how far he has come in other respects.

Since our last trip to NAPA in September 2019, Sacha’s gross motor skills in particular have really taken off. He has learnt to crawl functionally, to walk more fluidly and confidently, to run (albeit still in quite a wobbly manner), to move through various transitions, and even to get himself up from the floor independently, something we were told would remain challenging throughout his childhood. The foundations for all this development were in the CME—a specialist kind of neurodevelopmental pediatric physiotherapy—programme that we started at NAPA in 2018, and which we have continued as a home programme ever since. CME is one of NAPA’s specialisms, and a major reason families of kids with disabilities travel from all over the world for intensives there.

CME with Kaitlyn

For an hour each day Erin and Kaitlyn set up a series of exercises to activate Sacha’s vestibular system, strengthen his core and trunk, stabilise his hip flexors, build his confidence in initiating movements that feel scary—like bending his knee, or balancing on one leg—and which help him to motor plan so that he knows where to safely place his feet. Sacha always responds so amazingly well to CME and this time was no exception: the very next day after returning home from NAPA, Sacha was climbing up and down stairs independently! While we have been practising stairs with Sacha every day at home, which must have laid the foundation for this skill, NAPA’s intensive model of therapy is always so effective at consolidating potential skills and rendering them fully functional.

Sacha descending stairs on his own for the first time on his first day back from NAPA
Sacha started ascending stairs for the first time too just after we got back

Given how well Sacha has done with gross motor development, we decided it was time to start focusing more on fine motor skills, supporting Sacha to create the neural pathways that will give him greater awareness of and strength in his arms and hands. Due to his hypotonia and hypermobility, Sacha has had little motivation to use his hands and has even actively avoided doing so, which has significantly limited his opportunities for learning. A key skill that underlies fine motor development is the ability to integrate visual information with motor skills to correctly execute movement of the arms, hands and legs. ‘Visual-motor integration’ is crucial for many everyday activities that we take for granted—walking in a straight line, stepping safely down a curb, manipulating toys, drawing, writing and reading, or even just eating and drinking. For two hours a day, Sacha’s occupational therapist Wendy set him activities to target his visual-motor integration—walking on thin beams, walking in and out of boxes and across ladders on the floor, pulling ropes with weights attached, placing a ball in a net, knocking over skittles, placing pegs in a lightboard etc.

Working on pulling with the hands with Wendy

All of these activities help Sacha to increase his ability to bring his attention to and align his vision with the activity he is doing, which will open up a lot of new information and potential to learn. At the same time, they are developing his actual motor skills, creating the neural pathways needed for the motor action itself. All of this will also help Sacha to climb stairs more safely, because often when kids feel unstable in their bodies they do not develop the confidence to look down when they are walking, or focus on obstacles that are right in front of them, leading to accidents. In addition to visual-motor integration, Wendy helped Sacha gain greater awareness of his hands as functional tools, and develop a more sustained grasp, through crawling exercises that strengthen his shoulder girdle and give input into the hands—pushing a small shopping trolley full of weights, and quite literally weightlifting!

Working on hands, arms and shoulders with the Galileo machine

As Sacha gets older it has become clear that speech and language—and communication more generally—is by far his biggest struggle, being one of the most complex skills to develop. Sacha was beginning to move forward a little with this before lockdown, but the past 18 months produced a communicative withdrawal. Nevertheless, he has done amazingly well the past few weeks. While he finds it extremely difficult to gain enough awareness, control and coordination of the many muscles in his mouth to be able to express the words that are often clearly in his head, he has been trying so hard, and most days has attempted to say at least one word. He has also developed more confidence in initiating and participating in turn-taking play, which is an important foundation for communication. We anticipate that communication will be the biggest struggle in the coming years, but are determined to support Sacha as best we can. He clearly has a lot to say and to express!     

Again, as always, we cannot thank those of you who supported this trip enough. Every time we complete a NAPA intensive we see Sacha gain more autonomy and develop life-changing skills.

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