It is tricky for us to encourage Sam’s hobbies. Or find fun stuff for him to do that isn’t watching an iPad or being read a book. Activities often feel like hard work for not that much reward. We have had some successes: swimming and stories at the Horniman Museum in particular.
Over the last couple of months we have been trying two new activities with Sam regularly – music on Mondays and trampolining on Wednesdays.
Music is the very best kind of therapy – therapeutic input with specific goals in a trojan horse of fun! I’m certain Sam has no idea he’s working. I wrote about us starting music therapy here. Since then Sam has got over his upset at each session finishing and is happy to arrive and leave each week. We have just had a review with his therapist, who I will call C, where she showed me videos of some of the sessions and summarised how they were getting on so far.
We rarely have reviews that are as wonderfully positive as this. You could be forgiven for thinking Sam is some kind of musical genius when you talk to C. Her feedback is full of things like:
‘Sam has been extremely motivated to participate and shown himself to be very sensitive and musical, working hard but also sharing a clear sense of his fun character‘.
‘On a small number of occasions Sam has also very clearly, melodically, and beautifully, sung in response to the music. This is very fragmentary at present and it is likely to be an evoked – rather than consciously directed – response. However, the musicality and sensitivity of this illustrates clear musical understanding.’
In the videos I watched it was striking that during long periods (i.e. up to a minute) Sam was listening intently to music being played and was totally still. This is unusual – Sam is nearly always moving some part of his body. When he did try to participate he managed, despite all of the physical challenges. I saw him bashing a drum at the right time, and kicking a tambourine to a beat. Not always, but often. It is all hugely exciting and Sam is so obviously engaged.
Meanwhile, on Wednesdays we have been going to trampolining before the school day starts, on the amazing big trampoline that is hidden beneath the floor of Sam’s school hall. Sam was pretty relaxed from the beginning, but has been enjoying it more and more each week that we go. He clearly now knows what to expect and is really comfortable with the instructor, who I’ll call D. D has been bouncing higher and doing ever more bold moves as Sam lies on the trampoline surface and is flung around.
Having been invited to come along by the staff at school, Eli has taken longer to engage, preferring to play with the PE equipment in the hall rather than venture on to the trampoline. It’s not only disabled kids that need time to acclimatise and build up their confidence. Today, finally, he totally embraced the concept and D helped him to bounce and lie next to Sam. If finding successful activities for Sam is difficult, finding things that both Sam and Eli enjoy at the same time is THE HOLY GRAIL. I actually got cheek-ache from smiling so much (video below).
Similar to music, the trampolining is doing all sorts of things for Sam beyond letting him have fun. Being bounced around is excellent vestibular input (to the structures within the ear which provide information about balance, equilibrium and spatial orientation) for a child that doesn’t necessarily roll down hills or go down slides. It gives unique feedback through a body that can’t communicate with itself very well, and is physical therapy in disguise – Sam clearly tries to lift his head and arms throughout the sessions.
This is what happens when the stars align and you find something Sam’s interested in, at a time that suits him, in a venue that works, with a therapist or instructor who is really good at what they do. C is really careful – to the untrained eye she appears to be sitting in a room helping Sam play a drum. To a skilled eye, she is getting Sam in the right position, making up a song that interests him, adjusting the timing so he can get organised to move his hand to the beat, positioning the drum where he can bash it, constantly testing and adjusting to get the best out of him. D is filled with enthusiasm and has gently worked out what Sam likes and included Eli as much as she can. She works at a pace dictated by Sam, and is unfailingly pleased with every bit of feedback Sam gives her.
It’s all totally bloody brilliant. I couldn’t be prouder of these boys
(Not the best quality photos – iPhone cameras not happy with institutional lighting and bouncing.)