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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Music: finding a beautiful voice

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Sam has just started music therapy. After an initial assessment with a charity over two years ago, we finally made it to the top of the waiting list. As the days get longer, we are seeing more and more of Croydon as we make our way to the purpose-built Nordoff Robbins centre. for weekly music sessions

We were a bit nervous. We know Sam likes music – one of the comments from his school report last year was that he loved choir, something we were really pleased about, not least because by definition choirs involve a lot of noise. Sam still has a reflex that causes him to physically startle at loud noises. He has found this upsetting in the past but is learning to manage the shock.

And we watch him enjoying music at home – one of the most reliable ways to make him laugh is for his uncle to play the piano while telling jokes, in the style of Flanders and Swann.

But all of that didn’t necessarily mean music therapy would go well, especially after a full day at school and then an hour in the car.

At our first session we were met by our friendly music therapist, who I will call C. She suggested that she take Sam off into the music room while I wait in the entrance room. What?! Let Sam be taken off into another room without me? With someone he (and I) has only just met? Are you nuts?! That has literally never happened before.

But of course I was too embarrassed to say all that – no-one wants to be a mollycoddling, helicopter parent unless absolutely necessary. Sam was totally relaxed. C seemed confident. So I said meekly, ‘Great, yes, I’ll just be here’, trying to portray a sense of calm and normality.

Then I sat in the waiting room, sending my husband texts saying things like ‘Sam’s in music therapy on his own! Nervous!’, praying that Sam didn’t puke on C. I was straining to hear what I could from the music room but I couldn’t hear any complaining, just a bit of distant guitar, then a drum, then some singing.

After half an hour he reappeared looking pleased with himself and C said it had gone really well. I was even more chuffed than Sam.

Our second visit followed the same pattern, only this time at the end of the session I heard Sam crying from the other room and when he came through the door he was crying sad, hot tears. C said he had got upset when she sang a goodbye song. As we chatted he calmed down a bit, but each time we talked about leaving or saying goodbye the tears started again. And on the way home he sobbed on and off for twenty minutes, which is really unusual for him. He gets upset and he cries sometimes, but almost never for that long.

This week we went for our third session and the same thing happened at the end, but with less dramatic sobs and a quicker recovery. C is taking it all in her stride, but I started to worry that Sam just doesn’t like music. It seems unlikely since he’s happy when we arrive and enjoys music at school, but maybe…

I was talking to another music therapist while waiting at the centre, and he said it was lovely that C and Sam were getting on so well. We had a conversation about how much Sam ‘talks’ i.e. not at all, but he makes all sorts of noises that we can interpret as happy, sad, annoyed or bored. He said it was lovely to hear Sam singing with C, and that Sam has a ‘beautiful melodic voice’, which struck me as an incredibly accurate and particularly lovely thing to say about a child who can’t use his voice easily.

I’m hoping Sam’s approach to music might be like his acclimatisation to the school bus; he started cheerful, then found it all too much, then settled into happy contentment.

I’m pretty sure he really likes C and her music, and is just really upset that every week it finishes after only half an hour. In the absence of Sam being able to tell me, I’m keeping my fingers crossed. Maybe he is finding his voice.

Swimming (with update)

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There aren’t that many activities that we can do with Sam where he is really participating, rather than spectating. Swimming is one of them.

It’s taken a while for Sam to warm up to swimming. Our local leisure centre, Peckham Pulse, has a brilliant hydrotherapy pool which we can use but at first he found the loud, echoey acoustics of the pool overwhelming (tears). Splashing was also stressful for him (tears). And all of the fuss of changing and unchanging on uncomfortable wooden benches (tears).

I wondered if it was a family thing – around the same time I was taking Eli to eye-wateringly expensive baby swimming lessons where he’d scream every time the instructor came close, hated being put under the water, and tried to climb out every time we approached the side. I persevered because I thought it was important that he learnt some water survival skills. When James pointed out that hating being underwater and trying to escape from the swimming pool at every opportunity probably indicated Eli had understood the basics, I stopped going.

We kept taking Sam swimming occasionally and if we could minimise all of the other factors, he enjoyed actually being in the water. We went to a few hydrotherapy sessions to get ideas about what we could do with him, and it turned out he loved being bounced up and down, and being spun round, and being held in the bubbles when the jets were turned on. On holiday, Sam discovered the joy of the hot tub.

The secret to enjoyable swimming for Sam is to try to avoid the noise and splashing of other swimmers, which essentially means avoiding too many neuro-typical kids. Taking Sam to Rafts & Rascals is not how anyone would voluntarily spend a Saturday morning. Since it’s a bit hard to monopolise the hydrotherapy pool at a huge leisure centre, we were thrilled to discover the Family Disability Swim Session at 11am on a Sunday morning. We didn’t make it as often as we would like, but when we did it was fantastic and something we could all enjoy as a family: the holy grail of weekend activities.

On a rainy bank holiday Monday in May we didn’t have anything planned so we thought about swimming. On the pool timetable it said there was a Disability Swim session 12-1.30pm. Perfect! I phoned to check that we can take kids to this… and was told, ‘Yes, that’s fine for your disabled child to swim’.

‘Oh, great, we’ll have our other child with us too. He’s 2.’

‘No, non-disabled children aren’t allowed in the pool at this time.’

I then had a conversation where the lady suggested that one of us could go in the pool with Sam from 12-1.30pm while the others waited outside. Then Eli could go in the pool after 1.30pm while Sam waited outside. This was her ingenious solution to the problem of Sam not liking swimming with boisterous kids, and Eli having the misfortune of not being disabled.

When I complained I was sent the following email:

Hi Jess

Hope your well

Just to let you know the group that hired our hydro pool at 11am on Sunday have pulled out due to low number so we have put the Family disabled swim back on (11am-12pm)

This session will start again on Sunday 8th June 11am to 12pm

Thanks in advance

Most of my points were ignored but good news that the Family Disability Swim Session, when disabled and non-disabled children are allowed to swim together, was reinstated on a Sunday! Except I just looked at the pool timetable and the session has now been moved to 8-9am on a Saturday morning. How incredibly convenient! Thanks! Apart from it taking superhuman organisation to get anyone out of the house at 7.30am on a Saturday, it takes over an hour to feed Sam so no family swimming for us.

Luckily Sam has been getting plenty of opportunity to swim at weekly pool sessions with his school. We were nervous about this when he approached the first afternoon last September – he had never been in a swimming pool without me or my husband, and we were hypervigilant of the handling/noise/splash/discomfort/tears issues. We were proved wrong; Sam took the whole thing in his stride and has loved every swim lesson since.

Or, mostly loved it.

No-one had anticipated Sam’s love for Rick, a teacher who accompanied them to swimming (and often taught Sam in the classroom). Rick would help get the kids changed and then leave to get changed himself, at which point Sam would burst in to heartrending sobs which could only be alleviated by Rick returning. The boy’s got favourites.

We’re going on holiday to a house with a hot tub in August so Sam will be able to get his fix of water. Maybe by September the clumsy officialdom at Peckham Pulse will have realised that disabled kids have non-disabled siblings and they might like to go swimming together.

UPDATE

The Family Disability swim session at Peckham Pulse has been reinstated on Sundays at 11am and we all went last weekend. It was brilliant – Sam was relaxed and totally in the zone. Meanwhile Eli tolerated his armbands and learnt to float! There were at least four other families in the pool and it was a glorious mixture of disabled kids, their non-disabled siblings, mums and dads and we all loved it.

The downside is that Eli has asked to go swimming ever since so I took him this week and he spent a considerable amount of time shouting at me:

Eli: I want to be a fish.’

Me: ‘You can swim like a fish’

Eli: ‘No. I WANT TO BE A FISH.’

Repeat. Repeat. Etc.