Cycling

In our quest for fun weekend and holiday activities, Sam’s tricycle has been a godsend. We are constantly aiming for variety in Sam’s life; things to do that aren’t us reading him books or watching an ipad, activities that get him out of his wheelchair.

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The trike offers all of the above, whilst also allowing a rare opportunity for Sam and Eli to do the same thing at the same time and pace. Both boys have got orange bikes/trikes, and we have just hit the moment when Eli has worked out how to ride his balance bike for longer than 2 minutes without demanding we carry it. Meanwhile, Sam has hit his stride on the trike.

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This means we can spend fun mornings in the park. Sam is happier, and more active, than he would be if we were pushing him in his wheelchair (and strangely less scared of dogs). The boys like racing each other, and I feel like we’re a normal family. Our boys are learning to ride their bikes together, on sunny days, in parks full of daffodils. We’re living the dream!

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We’re not the only ones who like the trike – people smile at us as we pass, much more than they would if Sam was in his wheelchair. I think a big orange tricycle gives people a way in – even legendarily unfriendly Londoners find themselves saying hello. One woman asked if she could take a photo.

We bought Sam’s trike last year. We got advice from various physios and had trials with two companies. There is no statutory (e.g. NHS) funding for equipment like this, and they are really expensive, so we took our time deciding what kind would work best.

The trike we decided on, made by a company called Theraplay, can be parent-operated from behind, so Sam can ride the trike normally with us pushing and steering. This allows it to be as normal a riding experience as possible, but with us doing most of the work. Sam chose to have an orange one.

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Whenever we consider buying big pieces of kit like this there’s a tension between enthusiasm and caution. Enthusiasm for the possibility of this being The Thing That Sam Loves, that he can use easily and effectively, that he is able to operate independently and generally makes all our lives brilliant and fun. Caution because we’re about to spend £1400 on something that Sam might not like, might not be able to use, and then we’ll have to work out how and where to store a huge white elephant and manage our disappointment.

This time the gamble has paid off. We have been slowly increasing the distance and speed that we push Sam. He now likes us going really fast. So far, we have been doing all the work – Sam’s feet are forced round as we push the trike forward, but we might be on the cusp of him being able to do some of it himself.

He finds holding on to the handle pretty tricky, but he can sometimes push the foot pedals round on his own now. We still hold the handle in order to steer for him but for a couple of metres we aren’t pushing at all – all of the forward momentum is Sam on his own.

This is the moment that I really hoped might happen, but was worried might not actually materialise. To pedal the trike, Sam needs to control his legs separately and time it right. It is difficult for him but, like so much that he does, he is trying really, really hard. Well done that boy! Well done that trike!

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Hobbies

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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‘.

And:

‘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.

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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.)