brothers

Ben can cycle!

/ jess / 1 Comment

Milestones are a tricky thing for parents and children like us and Ben. Many of the obvious ones from early childhood never materialised and perhaps some never will. If they do, they will be the result of years of hard work on Ben’s part, considerable therapy input and a lot of patience. This is why we start to talk about ‘inchstones’ (as I have done here) which are no less valuable than the typical milestones. Inchstones recognise the scale of greys that we operate in; Ben can’t sit on his own but has worked up from always being held to being able to sit unsupported for two minutes. In our world, this is brilliant progress.

So there we are, pottering along, Ben working really hard on every aspect of his life, accumulating the inchstones. James and I are a bit distracted by the birth of Molly. It’s mid-winter (albeit one of the mildest winters on record) so Ben hasn’t been going out on his trike that much but we have been trying on the weekends when it isn’t raining…

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And then…

He is off! Riding his trike on his own! An unequivocal milestone! Starting with the odd couple of independent cycles with his legs, building up within minutes to confidently pedalling his legs round and round, spinning in circles. I wasn’t there to start with but James sent me jubilant videos by phone and by the time Molly and I got there Ben was happily cycling around the basketball court. We were all so happy it’s tricky to find a video that doesn’t have someone shrieking in it (I’ve muted the sound to save our blushes) but no-one was more excited than Ben himself.

It’s fantastic.

Because cycling is fun.

Because cycling is what six year olds do.

Because it’s Ben being able to move from one place to another entirely under his own steam which he hardly ever does (he can walk in his walker a bit but it takes a lot of effort and is therefore a bit inconsistent).

Because learning to ride a bike is a bona fide milestone (granted Ben can’t yet steer himself but let’s not quibble over technicalities).

Because Max also learnt to ride his bike in the same week and it’s lovely for brothers to do things together.

Because, above all else, Ben was proud of himself and that is a beautiful thing.

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Just in case it’s a while before another milestone comes along, I’m going to dissect a little how this one came about:

Patience and persistence

We have now had the trike for 15 months. We don’t use it every day but most weeks we have pushed Ben in the trike with his legs getting used to going round. I wrote a blog in April last year about Ben starting to cycle himself but it’s not until now that it’s happened reliably. These things take as long as they take. We must be patient and give Ben the chance to learn and develop the skills – it’s no use expecting things to happen quickly and, equally, just because he hasn’t done something (be it cycling, or learning letters, or using an eyegaze computer) within the arbitrary timescale imposed by some adults, doesn’t mean it won’t happen eventually.

Opportunity

As I wrote about here, we bought the trike privately as there is no statutory funding for such equipment and it was really expensive. Ben therefore had the opportunity to learn how to cycle, little and often, over time with no pressure. Kids like Ben have to be given access to equipment and activities even though things like trikes cost over ten times more than a normal child bike.

Enthusiasm

James and I are pretty good at taking Ben out in the trike but probably the thing that tipped the balance in favour of success was his new nanny/carer. She was with James and Ben the day that he nailed it and was coming to it with a level of enthusiasm which we had probably lost over the last 15 months. Ben really likes her and she was encouraging him to pedal on his own having given him a little push, and off he went. Maybe if James and I had been doing the same old pushing we wouldn’t have realised he was ready to do it on his own. It’s perhaps an obvious point but enthusiastic, skilled carers contribute hugely to Ben’s life.

Self-confidence

Because Ben is so dependent on others to help him with every aspect of his life, it is rare that he can do things on his own or that he can take full credit for them. I love that he was so pleased with himself for cycling, and that all of his patience and determination over the last year has been rewarded. When he went to school after the weekend we recorded a message about it on his communication button and sent video links to his teacher so his whole class watched him cycling. His teacher said he was thrilled when they discussed it and the idea of him sharing his huge achievement with his friends with a big smile on his face makes me feel all warm and fuzzy. The boy deserves a bit of self-esteem.

Siblings

Max learnt to really cycle his pedal bike the day before Ben’s achievement – he had been getting close for a while but required a hand on the back of his neck at all times which limited progress somewhat. It may be coincidence that the boys did it together, but probably not. They really keep an eye on each other and the interaction between them is great for them both – Max wants to do what Ben does and learn what he learns, Ben is encouraged to try games and activities that he wouldn’t tolerate at all if Max wasn’t around. This is the latest in a long list of examples of why having siblings is brilliant for them both.

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Brain surgery

It’s possible that some of this physical progress is down to the stimulators in Ben’s brain. The jury’s out at the moment – let’s wait and see how the rest of the year goes.

So hooray for big orange trikes and small persistent boys.

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Hobbies

/ jess / 3 Comments

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It is tricky for us to encourage Ben’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 Ben 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 Ben has no idea he’s working. I wrote about us starting music therapy here. Since then Ben 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 Ben is some kind of musical genius when you talk to C. Her feedback is full of things like:

‘Ben 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 Ben 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) Ben was listening intently to music being played and was totally still. This is unusual – Ben 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 Ben 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 Ben’s school hall. Ben 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 Ben lies on the trampoline surface and is flung around.

Having been invited to come along by the staff at school, Max 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 Ben. If finding successful activities for Ben is difficult, finding things that both Ben and Max 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 Ben 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 – Ben 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 Ben’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 Ben play a drum. To a skilled eye, she is getting Ben 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 Ben likes and included Max as much as she can. She works at a pace dictated by Ben, and is unfailingly pleased with every bit of feedback Ben 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.)