Cosmic Christmas!

It was Sam’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 Sam 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 Sam’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 Sam will enjoy events involving kids, noise, or lights, however carefully planned. But Sam 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 Sam 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 Sam (this blog being an obvious manifestation of my enthusiasm in this regard) and to celebrate Sam’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 Sam’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 Sam’s skills on national radio? Yes please.

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Five years old

Sam has just turned five.

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A birthday means the anniversary of his birth, which is a day we would all prefer to not remember. Apart from the joy of ending up with Sam, few good things happened that day.

But loads of good things have happened since! Each year we make a list of what Sam has got up to over the previous 12 months; achievements noted, developments made and skills gained. Parents of disabled children often talk about ‘inchstones’ rather than milestones. Early on, it became clear that the gross motor skill developments that characterise a typical child’s life were going to be hard for Sam so we had to adjust our expectations and targets accordingly, but success rewards the patient and if you look in the right places there are wonderful things to be found.

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In the year between his fourth and fifth birthdays Sam has done a lot, including:

  • left nursery, started school full-time (settling in brilliantly)
  • learnt to enjoy the affections of his brother and realised Eli can be funny
  • used an eye-gaze computer regularly, playing lots of games
  • learnt to look at Yes and No symbols regularly
  • stopped having any formula milk, eating only home-made food
  • adapted brilliantly to having a night carer
  • discovered his love of the hot tub
  • started getting the bus to school
  • learnt loads of letters
  • reliably recognised the numbers 1-10
  • starting riding his trike
  • met Michael Rosen!

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Sam has really thrived over the last year – he has been healthier than ever and had a lot of fun. We were looking forward to celebrating him turning five with a tea party and a family video of the past year’s best bits…

… and then he really pulled it out the bag!

We have known for a while that Sam recognises most letters and Granny has been diligently teaching him to read. His school has also been working on phonics with him and recently he has been using the eyegaze computer in his classroom to do some work with letters. The day before his fifth birthday, Sam came home with this message from his teacher:

‘Sam used his eye gaze [computer] to independently word build. I asked him to spell out bat and several other ‘-at’ words at the end and he did so no problem!’

If that isn’t a bloody milestone, I don’t know what is. Love that clever boy.

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