Autumn 2020 update

It’s been ages since we posted an update about Sacha. A lot has been happening in our lives—and, of course, the world—and it has been hard to find a moment to take stock. In quite dramatic circumstances—amid lockdown and a possible family Coronavirus infection, and several weeks early—on April 26 Sacha’s little sister, Niko, arrived in the world, precipitating all the expected changes both at home and in work; at the same time we were struggling to organise a move into a house large enough for a family of four.

Sacha likes to help feed his sister, albeit with some typical toddler ambivalence about his sibling

Lockdown was a mixed experience for Sacha. All his normal services—physiotherapy, occupational therapy, speech and language therapy, music therapy and so on—as well as the specialist, one-to-one attention he gets at nursery, were put on pause, which was a significant worry at the time; Covid-19 has been really hard on a lot of people with disabilities, as well as on their families and carers. Throughout 2020 Sacha’s support has been significantly reduced, and we have had to cancel both of the trips to NAPA that we had planned and fundraised for this year, essentially putting that aspect of Sacha’s therapy on hold.

But lockdown also gave us an opportunity to spend more meaningful time with Sacha and to work more intensively on his therapies at home. Day after day, week after week, we loitered with him in the car park of our tower block, using all the different slopes, steps and surfaces to gradually expand his competence on a gross-motor level. He learned to step up and down; to walk across, up and down different gradients; to walk on grass, uneven paving and soil; to pick his way between plants, over the roots of trees and down a muddy path. On short walks to the beach, he negotiated pebbles, paddling and sand, and splashing in puddles. Before too long we were able to take short walks around the block, and Sacha was starting to take pleasure in feeling a little more autonomous; he developed a new favourite game known as “You’re going the wrong way Sacha!“. It is, of course, easier to delight in little acts of naughtiness and insubordination when you start to be able to make decisions and to do things for yourself; with little gains in independence come vast new scopes for hilarity.

With all the time we spent on developing his walking under lockdown, Sacha got much more confident on his feet

The skills that really crystallised through lockdown were those that had first been activated by our trips to the NAPA Center, on the basis of the help from all Sacha’s supporters. While his capacity for movement is still not that of a typically developing toddler, the many hundreds of hours of specialist physiotherapy that Sacha has had since he was one year old have got him to the point where he is able to keep learning from his own activity: he can get himself around to explore the world, and can get into and out of an increasing variety of physical positions without assistance. Some things like getting up from the floor if he sits down or falls over, or climbing stairs to get up a slide in the playpark remain out of reach for now, but he has been able to learn for himself how to bum-shuffle down a staircase in our new home—something that would have been unimaginable only a few months ago.

Bum-shuffling downstairs

The main “frontiers” in Sacha’s development are now in speech and language, and in fine-motor control. In recent months—seemingly prompted by the arrival of a sibling—Sacha has been making more effort to communicate, and as a result of this it has become clear that his oromotor system (i.e. control of movement in the mouth) faces the same challenges as the rest of his body. Sacha really struggles to make coherent sounds because he lacks awareness and control of the muscles in his mouth.

At the moment his speech largely takes the form of humming the melody of sentence patterns. While this makes it seem clear that he has all kinds of words and sentences in his head, it makes it really difficult to understand what he is trying to say, even for his parents. Occasionally we think we can make something out, but often it’s not clear if he even has an exact sentence in mind. As he is older now, and more aware of what other children around him are doing, the struggle to communicate his thoughts and feelings and to have them understood has become extremely charged, with each day bringing huge amounts of frustration, anger and sadness, among other complicated emotions. We have been trying to use Makaton signs and picture cards at home to aid communication, but Sacha doesn’t seem to want to use these, (apart from the sign for sleep, which he enjoys accompanying with a visceral “oink”/snore noise). It is clear that he just wants to talk.

At the same time, partly as a result of his MAES therapy sessions, Sacha has become more curious and interested in toys. MAES is a form of physiotherapy which focuses on the capacity for physical problem solving, bringing awareness to the processes involved in play and encouraging more varied and spontaneous responses. A common issue for children with developmental difficulties can be the tendency to have quite a limited repertoire of responses, and to lack the confidence or capacity for more spontaneous experimentation. Sacha has definitely improved on this level recently and this has led to the opportunity for the development of some fine motor skills, recently learning, for example, that pushing a button could cause “twinkle twinkle” to play. Despite this, Sacha’s use of his hands continues to be very limited. It is pretty clear that he has significant dyspraxia and that this heavily affects his confidence to manipulate objects.

Jamming during lockdown

Time is passing rapidly and Sacha is due to start school next autumn, so there are some key things we need to work on in 2021 to avoid that being a very difficult and frustrating process for him: the ability to be able to get up off the floor if he falls over (which Sacha does more frequently than most due to his loose joints) and to climb stairs, greater ability and confidence to use his hands, and the capacity to be understood at least on a basic level. We are hoping to resume Sacha’s programme at NAPA in the coming year and have trips provisionally booked for April and August. Meanwhile we are doing weekly MAES and speech therapy sessions in the UK—mainly over Skype due to the Covid-19 situation, which isn’t ideal, but is better than nothing.

Spooky Sacha

As Sacha gets older the nature of his disability changes constantly with the growth of his personality. As Vygotsky understood, a person with a disability is not just someone who lacks a certain capacity, as there are all sorts of processes of compensation, adjustment and adaptation that occur both in themselves and in the people around them. This means that every case has a specificity that can’t ultimately be separated from all the particularities of an individual personality. Sacha is now in many ways a typical toddler, with all the emotional complexity, enjoyment in defiance and rule-breaking, and general capacity for being funny. He loves other kids and really wants to play with them, and to be part of their world, but he generally doesn’t know how. He finds most things much more difficult than a typical toddler would, and is aware of this, which leads him into the sorts of self-sabotaging behaviours we find even in adults. He wants to speak, but finds it so difficult he remains mute most of the time; when encouraged to utter sounds, he becomes resistant and tries to divert the situation into something else by initiating a tickling game instead! The struggle is to help him through these difficulties patiently, without adding the sort of pressure that can only make things worse; to keep things fun, socially warm and accepting, while also drawing Sacha out of the comfortable repetitions of too-easy behaviours.

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