‘This is Ben. He’s playing the iPad.’

About five years ago I did a BBC Radio 5 Live interview, which was indeed live, about Ben’s nativity play which we had been to the day before at his then school. The BBC had been filming the rehearsals for the play and interviewing parents before the final performance, and a lovely film featured on their website. It was also picked up by 5 Live and Ben’s school asked if I could be interviewed on air. I said I’d think about it and spoke to my husband, James, who said obviously I should do it – why wouldn’t I? And he was, of course, right.

Before talking directly to the presenter on air I had a conversation with the producer of the show who asked about nativity play. He was friendly, but it was clear the story they were looking or hoping for (similar to the website headline: ‘The parents who never expected to see their child in a nativity play’) was one of my surprise that my disabled child had taken part in a nativity play. Ideally I would talk about how amazed I was, that I had never expected this to happen because my child was, you know, disabled.

I gently pushed back and said the play had been amazing but not beyond what I had dreamt for my son, because the school was great so it was entirely within expectations that they’d do a Christmas performance. Then I tried to give them an alternative story (encouraged by James who has done substantially more media interviews) which worked. When I was put on air and talking to the presenter she asked about Ben’s progress at school and I told everyone that he’d read new words the week before which was a much better, feelgood, story. I wrote a blog about it at the time here.

I had never thought about nativity plays and been sad that Ben would never get to be in one. I’d never really thought about nativity plays at all – for either (at the time I had two) of my children. I don’t spend much time thinking about whether they will or won’t take part in these rites of passage. But if I had then I would have presumed that Ben’s excellent schools would make some version of it happen, and they have – we’ve been to a Christmas play every year since Ben started school. I wouldn’t say he has always enjoyed them, but they have happened.

Over the years Ben has got better at being able to take part in these kinds of performances without finding it all too overwhelmingly bright, loud, unexpected and unpredictable. His current school has an Awards Night every year where all of the pupils’ achievements are celebrated. There are some speeches and performances and each child goes up onto the stage to accept a certificate. The first time we went Ben hated most of it, but particularly the moment when he had to go up to the stage, and we wheeled him off the stage in tears straight to the car to drive home, leaving six members of our extended family clapping for children they were not related to. He gets overstimulated by the cacophony of music, clapping, lights, people and being the centre of attention. This kind of event doesn’t happen every day and therefore is hard to handle for him.

We didn’t go to the second awards night. We gave the third a try and didn’t invite other family; Ben’s crying that year wasn’t quite as loud but still heartfelt. This year we tried again and prepped thoroughly. We talked Ben through it for days before, agreed with him who would go onto the stage with him. As the ceremony started James read furiously from a poetry book and Ben allowed himself to be occasionally distracted. When it came to his class’s turn, James and Max wheeled him up to the side of the stage and delivered joke after joke to Ben.

I watched nervously from the audience as they came up to the stage and the headteacher handed Ben his certificate. I could see Ben was tense, already sweating from the stress of it all, but HE WAS NOT CRYING. He even managed a small hint of a smile. And then they wheeled off. Max appeared a few moment later demanding more sweets and when James and Ben returned to our seats we agreed we shouldn’t push our luck and beat a jubilant retreat to the car.

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So when, a week later, the school asked us whether Ben should take part in an evening music performance we were unsure. They reminded us that we had said no the year before. But now, fresh from the success of awards night, maybe we should give it a go? It’s a delicate balance with these things between it feeling wrong to force Ben to take part in events he hates and making him stretch his comfort zone so that he can discover that it’s broader than he thought. We said yes.

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On the day Ben’s teacher said they would take the kids to a rehearsal between the end of school and the performance so we just needed to turn up at the venue at 7pm. We had sent in his dinner that morning and they got him ready to go. We were so nervous we left home early and had time for an unusual Monday evening drink – just two parents having a semi-relaxed glass of wine before going to watch their son in a concert. It felt like a Thing that we hadn’t been involved in any of the preparation for this – we weren’t the ones getting him fed and changed and ready – we would just be spectators.

The performance was in a converted church and we took our seats looking down on the large area of floor which was the stage, where once there would have been an altar. Ben and his gang (five kids, five teachers/assistants because that’s how special needs schools roll) were at the side of the stage and Ben looked more relaxed than we had expected. The concert began and it was a mixture of folksongs played by professional musicians and pieces with children from other, mainstream, schools. We could see Ben getting more tense but his teacher was sitting right next to him and talked him through it.

When it came to Ben’s school’s turn they wheeled the children onto the stage as the compere/conductor explained that musicians from the London Symphony Orchestra had been visiting the school and had composed a piece with the pupils. He introduced each of the children and their instrument: ‘This is Ben. He is playing the ipad’. Ben had a trumpeter standing directly in front of him and when he touched the ipad with his hand the notes changed according to the pressure and direction of his touch. The trumpeter then played each phrase back, mimicking his ipad music, like a freeform duet. Other pupils played drums and buttons linked to recorded music. It was glorious.

Ben sat patiently at the side of the stage for the rest of the concert, listening to beautiful children’s choirs and enthusiastic drumming. At the end we collected him, thanking his teacher for the utterly brilliant way she had helped steward Ben’s emotions through the evening, and saying hello to the trumpeter who was chatting to Ben. We paused outside the church to collect ourselves and our belongings and people came up to Ben to say hello, to say well done. One lady bent down to his level and stage whispered, ‘Ben. That. Was. Fabulous.’ As we walked away, the evening warm and still light, a family coming the other way said, ‘Bye Ben, well done.’ We don’t know any of these people. None of them knew his name before his performance. It was amazing.

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I hadn’t imagined Ben would perform with LSO musicians, not because I’d thought he wouldn’t be able to do it because he’s disabled and would be sitting at home excluded from normal childhood opportunities (see BBC headline above), but because I didn’t know my children would have the opportunity to perform with LSO musicians at all. I would have been proud of any of them taking part in a ‘proper’ concert like this.

But particularly for Ben – it’s not that I’m amazed that he took part in these performances despite his disability; it’s that I’m so proud of him taking part in these performances because he’s disabled. Because he’s worked (working) hard to overcome all the reasons why things like this are sometimes overwhelming for him. I think it’s amazing that he has got to the point of being able to enjoy these opportunities despite finding it hard to cope with the noise, stress, unfamiliarity they involve. I love that the iPad was treated equally to the trumpet, and his disability incorporated, and that all the other parents and children remembered his name and came to say hello. It was one of THOSE moments which I’ll talk about when I’m old and dotty and reminiscing about how much joy my children brought me.

Hobbies

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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.)

Music: finding a beautiful voice

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Ben 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 Ben 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. Ben 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 Ben off into the music room while I wait in the entrance room. What?! Let Ben 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. Ben 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 ‘Ben’s in music therapy on his own! Nervous!’, praying that Ben 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 Ben.

Our second visit followed the same pattern, only this time at the end of the session I heard Ben 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 Ben 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 Ben were getting on so well. We had a conversation about how much Ben ‘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 Ben singing with C, and that Ben 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 Ben’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 Ben being able to tell me, I’m keeping my fingers crossed. Maybe he is finding his voice.