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.)

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A Missing Tooth

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By the way of pre-amble, let me say I am slightly tempted to record this as a podcast in order for the word Tooth to be pronounced ‘tuth’, rather than the more usual ‘too-th’. This is how my grandmother, Min, said it – I assume it must be a Worcestershire thing. It is how I say it to myself in my head, even though my London accent doesn’t say it out loud that often.

I have had many conversations over the past few months about Sam’s teeth. We seem to have hit a kind of critical mass of dentistry so at least four separate dentists have seen Sam or talked to me or others about him recently. They all work in different settings or hospitals, and have slightly different perspectives, of course united by their love of teeth. They also all happen to be really competent women; if only all fields were so stuffed with talent.

I am not complaining about all this attention. I have good teeth (no fillings, I am intolerably smug about it) and I have a mother who has spent significant time reminding me to brush my teeth, taking me to the dentist, banning me from eating sweets, and generally hassling me in the teeth department. I am trying my absolute best to replicate this aspect of my childhood.

Combine this with horrific stories about other disabled children’s teeth and I am hyperaware that we don’t clean Sam’s teeth very well. Sam can’t (and has never) opened his mouth more than a couple of centimetres. He has a bite reflex so clamps down on a toothbrush if it’s put between his teeth. He has high oral sensitivity and a heightened gag reflex. This all makes it practically impossible to clean his teeth effectively.

Sam is helped by the fact that he doesn’t eat so his teeth aren’t being covered in sugary snacks every day, but he also has reflux and we feed him food with carbs and sugar, so his teeth are getting contact with food albeit from the wrong direction.

We have been assured that we are doing all we can by Sam’s main dentist who is based in the community. The first time we saw her she offered useful tips and was sensible and friendly. She said she would be happy to see Eli as well, even though his dentistry is unlikely to be complex, because then I could bring the boys together. This kind of attitude is like GOLD DUST, and we have happily followed her to a different clinic further away for our visit every few months. You do not let these kind of people go unless you have to.

Sam wasn’t as enamoured with her attention as I was in early visits, and clenched his jaw tight shut as soon as she came close. No matter, we kept going, and at our visit last month Sam was relaxed enough with her to allow her a quick peek inside while the dental nurses let Eli operate the special chair.

This is progress, but the best way of knowing what’s really going on in there is to look properly when Sam is anaesthetised. It’s important to try and really see the state of his teeth as he will be unable to tell us if any of his teeth start to hurt, and any infection is likely to get pretty bad before we realise what’s going on.

Sam needs to have an (unrelated) investigative MRI in the next few months so we are trying to co-ordinate things so his teeth can be examined and cleaned while he is under general anaesthetic for the MRI. No-one wants to give him a GA purely for dentistry, but it makes perfect sense to kill two birds with one anaesthetic stone. It is a mere task of co-ordinating between the MRI department, a neurology department and two separate dentistry teams, one of which is on a different site. I don’t see what could possibly go wrong.

Meanwhile, at the half-term community appointment we had discussed Sam’s baby teeth falling out. The dentist said Sam’s teeth could start falling out any time from now. I was really anxious about it – Sam doesn’t eat, he rarely has anything in his mouth. He can’t use his hands to get a tooth out. What if his tooth fell out and we didn’t notice and he choked on it? Would he manage to swallow a tooth? What if it happened at night? Should we wiggle all of his teeth all the time and then encourage loose ones out (she thought I was overdoing it by this point)?

Three days later, I got Sam out of bed in the morning and there was a whacking great big gap in his teeth. His bottom front tooth (‘tuth’) was gone! And he was alive! I was, am, very excited and incredibly relieved. There was no sign of the tooth despite much searching of his bed, but Sam (via Granny) notified the Tooth Fairy.

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And she kindly left a pound coin. Which made us realise that because Sam can’t ask us for stuff, we’ve never given him any money. Eli is always demanding money (real or fake) but we have never thought to give Sam coins of his own. Now we need to get him a money box.

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So Sam looks cute with his toothy grin, and my fears have proved unfounded. Only 19 more teeth to go…