‘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.

Cosmic Christmas!

It was Ben’s school nativity play last week. His first ever. Called ‘Cosmic Christmas’, it wasn’t the typical nativity story (each class were aliens from a different planet, I don’t recall that detail from my school plays) but it was great. Each class did different things according to the childrens’ disabilities or talents.

As part of the performance, the school had pre-recorded videos with some of the children. We watched Ben and another boy smiling as the sun rose on Red planet, news had spread that Mary and Joseph were going to Bethlehem. They then had a subtitled ‘conversation’:

‘Have you heard?!’

no what

‘The star said that Mary is having a baby!’

a-baby-really

‘They’re crossing the desert to Bethlehem’

thats great news

Having heard that Mary and Joseph were going to have a baby, the aliens then celebrated with a dance, to African music obviously. Most of the kids in Ben’s class are in wheelchairs, which had all been decorated in the red theme.

There was loads of emotive music and a little tear in my eye. It can’t be assumed that Ben will enjoy events involving kids, noise, or lights, however carefully planned. But Ben was happy and engaged, even if a bit tense at times (the boundary between exciting and overwhelming being very narrow at times like this).

At the end, everyone sang the school song ‘Something Inside So Strong‘ with all of the staff doing makaton signing. It was a glorious mix of total chaos (these are not a group of kids who naturally keep still or quiet), festive fun and emotion.

A crew from the BBC was filming the play and this week they put this video online. The school phoned to ask whether James or I would talk to BBC Radio 5 live about watching the play. I might have said no, but as James passed on the message he said ‘Do you want to go on 5 live at 10.30am? You should do it’. It then seemed a bit pathetic to say no.

James has done 5 live before, and it’s never a bad thing to equal one’s partner’s achievements (yes, he was talking on a satellite phone in the midst of a revolution, but let’s not be pernickety).

So that is how I found myself sitting on the floor of my sitting room waiting for a call at 10.30am on Thursday morning. When James bought the cheapest house phone in the shop last month I don’t think he anticipated it being used for live radio. When it rang (tinnily) I was put through to the studio, which meant I could hear the live radio program down the phone. I sat through a lot of news about ankle injuries and wingers, then a very sad breaking news story, before the presenter said hello and we were off.

You can listen here (from about 44 minutes in). I did what I always do in any public speaking situation, which is to instantaneously forget what I have said. When James asked me afterwards how it had gone, I had no idea (yes, he wasn’t listening, some excuse about a meeting). The school were happy, which was the most important thing – they called to say Ben had been listening in his classroom and had smiled at my voice. When I went to collect him that afternoon I felt like a minor celebrity.

I was thrilled to be given the opportunity to talk about Ben (this blog being an obvious manifestation of my enthusiasm in this regard) and to celebrate Ben’s school, which I love. The staff had worked very hard on the play and the kids and parents enjoyed it – and that is something worth publicising. People love a feel-good story about kids, and the video was ‘most watched’ on the BBC website for a good few hours. It is beautifully filmed and it celebrates kids who deserve to be celebrated so all to the good.

It is, however, a fascinating insight into the perception of disability by media, or at least what you have to call a news story to get people to click on it. The headline of the BBC News video, The parents who never expected to see their child in a nativity play, is awful and misrepresentative of the piece as a whole. The whole ethos of the school is positive and optimistic and to involve the parents, so it would be a failure if parents thought there would never be a nativity play and had no idea what their children were capable of, only to turn up to a Christmas play and have their minds blown!

When the 5 live producer had called me to discuss the piece, he had asked, hopefully, whether I had ever thought this would happen? Had watching the play had been the highlight of my year? I said it was fun, and I enjoyed it, but loads of good things have happened this year. As much as I like to tug people’s heartstrings when possible, let’s not get carried away.

I told the producer enthusiastically about Ben’s recent spelling triumph using an eye gaze computer, and the presenter then brought that up at the end of the segment. An opportunity to advertise a brilliant school and broadcast Ben’s skills on national radio? Yes please.