Playing for laughs (via eyegaze)

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I’ve got three kids! I don’t have much time to write blogs! And we have moved house, again, so things are as relaxed as usual round here.

In amongst the chaos and many, many boxes, Sam has been continuing to use his eyegaze computer. It travels to school with him every day and then he uses it at home for a mixture of entertainment and communication. Sam is building skills in using his eyes and navigating around software on a computer, and much of this is by playing games or other activities that he finds motivating. Like everything to do with kids learning something, anything, it’s best done through play as far as I can see.

We have various activities that he enjoys on his computer; his favourites are, unsurprisingly, stories. Some of which are ‘multiple choice’ where he has to pick the right word to continue the pre-programmed story. Others are computer equivalents of audiobooks where the entire text of a novel is on the computer and Sam can choose the story he wants, select the chapter, and then it is read out to him (in stilted computer voice, but he doesn’t seem to mind). Crucially, he has to keep selecting ‘Speak Paragraph’ in order for the story to continue, meaning that he has to engage consistently.

Sam’s current favourite book to read like this is Mr Stink by David Walliams. We have the actual book and read it to him frequently (actually I don’t, generally because I’m often preoccupied with a smaller child, but others do including my dad who assures me it is great and totes emosh). Other times Sam sits at the table reading it to himself via computer. It’s brilliant.

We hadn’t foreseen quite how fantastic the computer is for Sam and Eli to use together. The laptop is touchscreen and so they can play games like, for example, Splat the Clown where Sam can splat using his eyes and Eli using his finger. There aren’t many activities that they can do together like that, with total parity.

The current hit, however, is the most simple of all. By navigating through various screens within the PODD communication software Sam can get to a page which just has Yes, No and Don’t Know buttons.

Through trying to gauge Sam’s reliability of answering yes or no to questions (Sam doesn’t have a totally reliable yes or no, which is a work in progress for him and something about which I could – and may at some point – write an essay…), James invented a game of asking him sets of related yes/no questions, some of which are totally ridiculous. It is a good way of him practising giving us a clear yes or no when we know he knows the answer. He is definitely making progress on this. The thing we didn’t expect, and which is in danger of slightly undermining our carefully constructed strategy, is that Sam is now giving us the ‘wrong’ answer because it’s funny.

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Oh the laughs! The advent of this game has also coincided with Eli hitting the zenith of his life so far where he can successfully make every member of our family laugh. Let me assure you that watching one of your kids make the other laugh is one of life’s pure joys. Watching Eli make BOTH of the other kids laugh is very, very lovely and makes my heart sing. All the feelings.

So it isn’t just James and me asking the yes/no questions, but Eli too, and Sam bloody loves it.

In this clip I’m asking the questions, and modelling the answer. I think you get a real feeling for how much respect my children have for me.

In this (longer) clip, Eli’s asking the questions and no doubt because I’m videoing, Sam is not answering. Sods law. Then while I’m waiting for him to answer, he navigates out of that page which is autonomy in action, and is the physically disabled equivalent of a child wandering off because they have lost interest. He actually then went to a different yes/no page, through a different pathway in the software (which I didn’t know you could do), and then we continued. His ability to do this, without us mediating, is as pleasing to me as all the chuckling.

In the interests of equity between my kids, I leave you with a video of Eli making Stella laugh. I defy you not to feel cheered by a small child talking nonsense and a baby thinking this is the height of wit.

 

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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.

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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.

The Twits

The time has come to elaborate on the ‘stories’ part of ‘Stories with Sam’.

Sam loves stories. He’s always liked books. When Sam was almost one year old, we were on our way back from a holiday and due to huge snowstorms and a perilous motorway we made an unplanned stop at my sister Maddy’s house in Nottingham. At midnight Sam woke and was really struggling to breathe. My sister and her boyfriend got up to show us the way to the nearest hospital, where we carefully walked over the ice to reach A&E. As soon we mentioned breathing problems in a child with cerebral palsy who was not yet 1, we got whisked through to a bed where they gave Sam some drugs and a nebuliser. We were surrounded by doctors and nurses, Sam was very distressed and his breathing was really laboured.

While James briefed an Intensive Care doctor on Sam’s history, in case he needed to be sedated and ventilated, a nurse suggested I sit with Sam for a bit and do something he enjoyed to see if his breathing calmed down. So we read The Very Hungry Caterpillar. Sam smiled at the list of food like he always did, and by the time the caterpillar had become a butterfly Sam’s breathing was much improved.

The nurses said they had never seen a more dramatic response to a book.

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After school this afternoon I put Sam into his Brookfield chair (new, less supportive than his normal chair so he has to work a bit harder, a bargain at £750) and offered him a choice of four books to read, all of which he knows well: Sir Scallywag and the Golden Underpants, Watch Me Throw The Ball, Shifty McGifty and Slippery Sam and The Twits. He knows all of these books well – particularly the first three which are fun picture books.

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Sam chooses by looking at the book he wants. He chose The Twits by Roald Dahl.

The Twits is a more recent addition to our library. As I mentioned previously, Sam’s a big fan of an old video on YouTube of Rik Mayall reading George’s Marvellous Medicine. His uncle Harry then bought him a box-set of every Roald Dahl childrens book and we’ve been working our way through them.

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I think some people wonder how much Sam understands, how much he can learn. The kid chose the book with barely any pictures, no colours and a lot of words. He bloody loves stories. Even when his brother is trying to run over his hand with a truck.

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An hour later I found Eli sitting in the chair, drinking milk and watching TV. How many other kids get to relax unsupervised in furniture that valuable?

(Apologies for blurry phone photos – hard to take high quality pictures when you’re busy reading)