Having a laugh in Trafalgar Square

We have recently been printing photos – mainly for a wall in our house where we have an ever expanding, slightly chaotic collection of family photos. There is currently not a single photo of Stella on the wall. She is almost two years old. We need to rectify this quickly, before she’s tall enough to see the photos and old enough to mind.

As I go through the photos on our computer, I get distracted by loads that will never make the cut for the wall. I like to think I am a decent photographer, but almost all our recent pictures are badly composed phone photos of non-compliant kids. So I force myself to focus more on the memory and emotion of when the photo was taken, than on the quality of the composition. Kids don’t care if the background is full of mugs and syringes, they just love a photo of them with their dad.

But this photo, I love:

IMG_6506

It is technically flawed, badly composed. But look how happy Sam is! And look at all the tourists wandering around behind him, oblivious!

This was taken during the summer holidays, just off Trafalgar Square. James, Sam, Eli and I had just been to the theatre to see Horrible Histories at the Garrick Theatre. We had brilliant seats. Sam’s space was just off the foyer, at the back of the circle, so quite a long way from the stage but with a brilliant view. This is everything we look for in a theatre seat for Sam: wheelchair spaces in theatres are often right by the stage which he finds a bit much. There have been numerous times when we have had to leave a theatre early because Sam isn’t enjoying the performance. (His other pet hate is unexpected, roaming musicians in theatrical performances. He likes people to stay on the stage, not appear behind him playing a trumpet.)

IMG_6500

The rest of us had seats either side of Sam, and we all enjoyed the brilliant performance. The boys have watched almost every episode of the TV programme so we knew what to expect. It was genuinely amusing for all of us, with poo jokes interspersed with historical facts, and loads of songs. Who doesn’t like a rap about Henry VIII?

IMG_6497

After the performance we went to a café just off Trafalgar Square for lunch. We sat outside, with the pigeons, and put Sam’s ipod on while we were eating. Understandably, Sam gets bored if he’s just sitting around while being fed, and it’s not possible to talk to him or read him a book while eating a sandwich, so we always have a bluetooth speaker attached to his wheelchair (the pink circle by his head) which is connected to an ipod full of audiobooks. I think he’s listening to a David Walliams story in this picture.

I love the photo because how could you not love a kid laughing this much? But also in this photo I see all of the other ways in which I have changed over the seven years I have been his mother. At the beginning going on a trip like this to central London could be a bit daunting – how would we get there? Could we get Sam’s wheelchair in? Had we packed everything? Would Sam enjoy it? When Sam was very small I sometimes felt self-conscious about feeding him in public. I was really aware of how much noise we were making, and would have felt a bit anxious about playing an audiobook in a public place. I might have noticed whether people were looking at Sam, not because I was ashamed of him but because I was worried about him noticing them looking. Sometimes it felt like the logistics involved in getting us somewhere weren’t worth the risk that Sam wouldn’t enjoy it.

This trip was lovely. We packed what we needed (takes time, but we’ve done it hundreds of times) and drove in to the West End. We were a bit early so we had a coffee in Leicester Square. Went to the theatre, had lunch at Pret. Admittedly we had left Stella at home, as she would have added an unnecessary level of unpredictability to the whole outing.

IMG_6512

Not only do we now not care if people see Sam being fed through his gastrostomy tube, we don’t even notice if people are looking. If he laughs hysterically, loudly, we are chuckling with him rather than being self-conscious about other people noticing. If Sam needs to listen to an audiobook in order to not get bored, that’s more important than whether someone doesn’t want to listen to David Walliams in their lunchbreak.

And what this photo shows is that Sam has a brilliant time on these kinds of trips. We all do. He hugely enjoyed Horrible Histories, and now knows more about the naming of Saxon villages than he did previously. He is able to take advantage of us living in London.

And the general public in Trafalgar Square are largely too busy going about their business, admiring Nelson’s Column or grabbing a turmeric latte, to notice whether our son is disabled, or tube-fed, or listening to The World’s Worst Children.

This is the kind of photo I wish I’d had in a crystal ball when Sam was little and not enjoying life. I might laminate it and show it to anyone who gives us the pity-look and talks about how sorry they feel for him. Don’t feel sorry for him or us, he’s having the time of his life!

Extraordinary Bodies

Of the many things that change when you have kids, evening socialising is one of the most dramatic. James and I went from a pretty healthy social life to much rarer escapades, partly because it’s difficult finding people who we can train and trust to look after Sam, partly because babysitters are expensive. Going out is relatively unusual and totally lacking in any spontaneity.

I was therefore excited as we headed to Dulwich Park last Saturday night, for an open-air circus performance called Weighting organised by our local council. I knew it would involve disabled and non-disabled actors and performers, and we would sit on a blanket, and it wasn’t raining. I had high hopes.

I was not disappointed. In a week when the election result had not been what I had hoped for and I’d read a report about Sam that had been unusually pessimistic, this was the antidote to any and all negativity.

IMG_0171

IMG_0173

The performance centred around a bridge which separated worlds, and upon which incredible acrobatics were performed. There was brilliant music, and a storyline about a father’s fear of letting his daughters out in to the world. The performers were lit by the sun setting behind us, and the audience was full of every (dis/)ability, race, age and gender. I was loving it.

IMG_0178

IMG_0182

And then the Father in the show, who had a physical disability which made it difficult for him to walk and who I suspected might have cerebral palsy, started making his way on to the bridge amidst a storyline of him accepting his family must go out in to the world. He got most of the way up the bridge, slowly and carefully, and then leapt off the edge. Attached to a harness, he swung up and down suspended metres from the ground and looked so completely free, and it was so clear that he was enjoying himself, and IT WAS AMAZING. I did a lot of crying.

IMG_0183

IMG_0185

Then the community choir started, signing along with the lyrics they were singing, and a children’s choir joined them. This did not help my tears dry up.

Both in its preparation and its storyline, this was a show about people, some of whom happen to have disabilities. About the part of London we live in which is diverse in every way. It was about hope, and not letting fear take over, and love, and joy.

The theatre company Extraordinary Bodies celebrates every body, disabled or not, and turns the very fact of its inclusiveness in to its greatest asset. From the sign language interpreter dancing while signing, to the council subsidising such an inspirational piece of theatre so it was free to all, it was an extraordinary performance.

At a time when it feels like disabled people are taking the brunt of austerity in countless ways, Weighting tells us what we need to remember. Let’s regard everyone as extraordinary, help each other, come together and find joy where we can.

Big Book of Bad Things

To say Sam has a mixed relationship with theatre would be generous. There are numerous examples of him hating theatrical outings and our success ratio is pitifully low.

We have had reasonable success with productions by Oily Cart, who produce theatre specifically for disabled children which is inventive, imaginative and brilliant. They often adapt their shows for mainstream audiences, and even when we have taken Sam to these more hectic performances he has enjoyed them (or at least bits!).

In March this year I took Sam to a production of Not Now, Bernard at the Unicorn Theatre. We had been to productions there before – it is a lovely theatre with accommodating staff. We had a wheelchair seat at the front of the theatre space – right next to the stage with its bright lights and in front of about 60 excitable (noisy) children.

Sam struggles with this kind of thing – he is nervous in unfamiliar environments with bright lights. He still has a startle reflex so loud noises make him physically jump. The sensory overload of unexpected music and people leaping about onstage can be a bit much. And so it proved: the show started, a man came on to the stage just in front of us and there were some loud noises and that was it – Sam in tears and me unable to bring him back from the brink. I decided we had to leave.

Unfortunately our proximity to the ‘stage’ (white painted floor) meant this involved me carrying a long, sobbing 4 year old while carrying two coats and a bag – and pushing a wheelchair ON to the stage thereby causing maximum fuss and creating some inadvertent audience participation. We had lasted five minutes in the theatre and then went home. During a tearful phone call with my husband in the car, we agreed I wouldn’t take Sam to the theatre on my own again.

Of course one solution would be to not take Sam to the theatre, but this seems too depressing a conclusion. It would be to give up on something that I though I would do with my children. Broadening horizons and facilitating new experiences is stressful and often a disaster, but we have to keep trying. Sam loves stories and melodramatic performance in familiar places so there must be shows he would enjoy. Surely!

One of Sam’s most favourite things to do is to watch videos on YouTube of Michael Rosen reading poems and stories from his books. He’s enjoyed these videos for over a year and we must be responsible for hundreds, if not thousands, of views. He particularly likes this one about bending a toothbrush which is from the book Michael Rosen’s Big Book of Bad Things. There are many reasons why one might be a fan of Rosen, he has written loads of books. We have a family tradition of singing Sam a song based on his book, Little Rabbit Foo Foo, which last Christmas was staged as a play by his granny and uncle.

I found out that Michael Rosen would be reading/performing from this book in London. I booked for us to go.

We were nervous and excited, really hoping Sam would enjoy it but ready for the moment when he lost it halfway through and we all had to leave. In order to maximise the likelihood of success, we arranged to drop Eli off with his uncle down the road and spent a lot of time telling Sam where we were going. So much in fact, that on anyone saying ‘Big Book of …’ Eli would shout, ‘BAD THINGS!’ at us all. Sam thought that was amusing.

Our seats were right at the back of theatre (good) and at some distance from the stage (good) and we were let in to the auditorium first so we watched everyone else come in (mainly kids older than Sam) and Sam had time to get used to his surroundings. James read him poems from the book while we were waiting.

IMG_8365Then Michael Rosen came on stage. As he spoke loudly into microphone for the first time, we held our breath. But Sam was fine. More than fine, in fact. He smiled, he listened. Michael (is that too familiar?) told lots of stories – many with loud noises and audience participation – and Sam was happy. James and I sat on tenterhooks, laughing at the jokes but poised for the moment that Sam wasn’t enjoying himself any more. But it never came. Sam just watched over an hour of performance – smiling a lot, giggling occasionally, totally focused for 60 minutes. It was totally bloody brilliant. The boy loves a story, and Michael Rosen is really good at stories. And apparently if Michael Rosen makes sudden, startling noises in a theatre, that’s okay.

When it finished we queued up with loads of other kids to get our book signed. In the crush of us all pursuing the author, Michael walked past us and stopped to say hello to Sam. As we queued, Sam was squashed between loads of older kids and he was unperturbed and patient (occasionally accidentally kicking some kids but that’s inevitable when you can’t really control your legs; they were very tolerant). Our book was signed: ‘Michael Rosen was here’, and off we went. Everyone on Facebook was jealous.

IMG_8373

IMG_8379

So that’s what it’s like to take your child to the theatre and them enjoy it. It’s fun! Sam loves hearing language and words and rhymes. I am fascinated by how that really works – when a typical child learns to speak they learn the sound of letters by saying them. How does a child who can’t speak learn sounds? Who knows. But for now, we’ll do our best to stalk Michael Rosen.