It’s been two months since we returned from our last trip to NAPA, and as we enter the summer we thought it time to send an update about Sacha. He started nursery this March, and since then he has picked up just about every bug in Brighton—often giving them to us too—which has meant that we have had difficulty consistently pursuing his therapies to the full. Despite this, in the weeks since we returned from Boston we have seen a significant leap in his ability to move—bearing out once again the effectiveness of this sort of therapy for kids with conditions like Sacha’s.
With much practice and a huge amount of encouragement, Sacha’s walking has gradually become more confident and his movements more fluid than before, and (as hoped) this has produced an increased level of motivation to move. This does have its complications: he will now just wander off in the middle of a physio session! Every day we have given him some time using a baby walker, which has allowed him to experience walking a lot faster around the flat and even outside. He can also now pick his way along the furniture. With this increased confidence and sense of stability you can see his spatial awareness deepening as he often pauses to look back at the distance he has walked, or turns himself around to see the room from different angles. This is helping Sacha to more effectively organise his knowledge of the envrionment and its objects, giving him a stronger sense of orientation towards the world.
All this is having an effect on Sacha’s proprioception—his sense of his own body in space. From his increasing fluidity of movement, growing confidence and developing sense of spatial awareness, a heightened curiosity is emerging and Sacha is beginning to explore his surroundings more—walking to the plant pot to feel and taste the mud, or trying to pull books off the bookcase. While there are complicated debates about what “motivation” is (and even whether it exists), it seems clear that the increased physical ability and the stability in his core is helping Sacha to feel more secure in the world such that he can gain greater control over his limbs and also begin to take more risks and make more choices. This in turn is bringing curiosity and interest. But there are still obstacles with Sacha’s mobility. While he can now walk, his movements are still restricted, and if he falls over he cannot get back up on his own.
From everything we have read, it appears that Sacha’s lack of engagement with toys—and more generally, objects, or things—has resulted primarily from a neurological issue, i.e., a weakness in the connections between the brain, the nervous system and the muscles. But as the body is a complex system it is impossible to isolate a single causal point, and so the therapeutic challenge we have faced is how to tackle these issues systematically. Trying to find a way to ignite Sacha’s stimulation by and engagement with toys—the process through which children learn the most—without being overly directive remains our biggest challenge. How can you facilitate autonomy? This is a problem faced by many parents whose children have complex learning difficulties. There is no simple answer, but it is clear that a combination of daily specialised therapies, together with a huge amount of love and encouragement, definitely helps.
Physio strengthens his core and puts deep pressure into his joints, occupational therapy activates his vestibular system, Waldon therapy scaffolds him in performing movements and actions with his arms and hands, helping him to get deep sensory feedback into his body and develop a more complex practical sense of the space around him, and focused cognitive activities like reading, shape sorting, colour sorting and tower building help to push his conceptual understanding forward. Sacha has also been doing Anat Baniel Method therapy, which helps him develop a more nuanced understanding of his body, with the aim of opening up a more complex range of movements. This summer we are also beginning to turn our attention to speech and Sacha will hopefully be having weekly speech and language therapy, so he can begin to express himself verbally, as well as through movement.
Sacha loves nursery. He really enjoys being with other children and seems to be joining in with at least some activities. Although he is now two, due to his difficulties the nursery has kept him in the baby room. For a while it seemed that he might have to leave nursery at two, due to there being a lack of provision for his disability. While his therapists decided that Sacha would benefit from a 1:1 to help him participate fully at nursery, we were told that the provision simply isn’t there and that he might receive assistance when he is three, at best. This is a widespread, structural problem, with an increasing number of children being marginalised from nurseries and schools due to a lack of funding. But Sacha’s recent progress in terms of mobility means they are now hoping to move him in with the other toddlers in the autumn. This way he can be around children his own age and get the social engagement he clearly craves and needs. This decision still partly depends on the progress he makes between now and then, so the work we do with Sacha over the summer is crucial.
In September we are due to return to NAPA, and we are currently fundraising for that trip—although thanks to the kindness and generosity of Sacha’s supporters we’re already almost there. We are also trying to think of ways to fundraise enough money to cover weekly speech and language therapy, occupational therapy and music therapy for one year—please send us your suggestions! The aim is to try to maintain an intensive level of therapy until Sacha is three, covering the optimum period of neuroplasticity. Sacha really has come a long way since last autumn and we can’t thank you enough for your support. We were just remembering this evening that only a year ago he was unable even to feed himself from a bottle, move, or communicate that he was hungry. With the therapies that we’ve been able to give him since then, he has emerged from his shell and started not only to move around and explore the world, but to also take pleasure in it.
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Merci pour les nouvelles et courage à tous les trois.
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