Broadening Horizons

When I was doing my post-graduate diploma to become an architect, I studied at a very well-respected university in London. Through a complicated, confusing process of admissions, I ended up in a teaching unit with two eccentric tutors. They dedicated themselves to broadening the horizons of their students as widely as possible, the manifestation of which was to teach us as little as possible about buildings while having long (and occasionally unintelligible) conversations about cybernetics, pataphysics and (in the case of my work) weaving.

For me, it wasn’t a hugely successful approach and I didn’t thrive in an environment so self-consciously wacky, but I respect their intention. Life, and particularly professional life, is rarely as varied and fun as one would like so it’s important to broaden horizons before they are narrowed by the requirements of a Local Authority Planning Officer.

I carry this idea in to my parenting. I think the role of any parent is to provide as many possibilities as possible, to raise a child that believes they can do what they want and understands how big and rich the world around them is. Of course I have prejudices and opinions which I can’t help projecting on to my kids – I would like my sons to contribute, I might struggle to rouse enthusiasm for them being bankers – but I mainly want them to feel they have options.

Naturally our aspirations for Sam have adapted a bit to fit his talents. James has had to accept that the already low probability that he’d play international rugby has further decreased. But that’s okay – I have never been hugely keen on the idea of my (inevitably) slight sons being pummelled – we just need to find some alternative possibilities and role-models.

Much of the world is still open to Sam. He can read and spell at an appropriate level for his age so as long as we can facilitate his communication there is no reason that he can’t do all sorts of exciting and interesting things. Once you start to look there are lots of people with profound communication difficulties doing brilliant jobs: Stephen Hawking obviously, the media’s favourite disabled person.

I recently came across the work of Jacqueline Smith – an artist who is physically disabled – through my mum spotting something in a Printmaking magazine. Following some internet detective work, I found the Eye Can Draw project which aimed to establish greater access to printmaking for artists with disabilities in Dundee, Scotland. Amongst other things, they linked eye-gaze technology with graphic software, and then used the drawings to make prints using various printmaking techniques.

Once you think about it, it’s an obvious thing to do. But it hadn’t occurred to me. Sam uses an eyegaze computer to play games; why not encourage him to make art this way?

THIS IS WHAT IT’S ALL ABOUT. These are the people we need to know about. Not just taking Sam to art for kids and hoping/helping him to use his hands, but finding role-models, and their work, which is inspirational in both process and end result.

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I loved Jackie’s prints, and I’m pretty sure I would have liked them even if I hadn’t been so heartened and inspired by her methods of production. She is a talented artist who just happens to make her pictures via some specialist technology, which itself requires skill and expertise to use. It is no surprise to me that Jackie’s work was nominated for the Lumen Prize 2014, for art created digitally.

So I bought one! I pretended to myself that it was a present to Sam. I had a very friendly email exchange with Jackie who was concerned that the scale of the print would be intimidating in a domestic environment, but I can’t think of anything better than eye-catching eye-gaze art. Let’s intimidate ourselves with the positivity of disability.

The print is now framed and yes, it is rather large. I might make it my goal to only buy pictures that are the same size as my children.

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How we learn to talk

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I have just done a two day course on a system that I hope will help Sam communicate with us and everyone else.

Communicating is one of Sam’s biggest challenges. He has a lot to say, but his severe disability hampers all of his efforts to tell us what he thinks or wants: he can’t speak, he can’t point, yet he understands a lot.

He has found highly effective ways to get round this day-to-day. He can smile or frown, laugh, shout or show us his bottom lip (the degree of protrusion of the lip is directly proportional to his sadness, on a spectrum that ends in full-blown sobbing). Whingeing indicates dissatisfaction. Looking expectant means ‘I’m interested’.

Sam has the intellect to express far more sophisticated ideas and desires than this – but he needs the tools. So we are working with Sam’s school and a number of speech and language therapists to maximise his opportunities, using Assistive and Alternative Communication, or AAC, the term used to capture a whole range of communication systems that don’t rely solely on speech.

Everyone involved in this effort comes together at a termly review meeting. Last week that involved eight professionals sitting around a table for several hours discussing progress. The combined level of expertise is immense.

And partly because of all of this input, Sam is doing brilliantly. In last week’s meeting someone pointed out that (PROUD MUM ALERT) Sam’s spelling is on a level with his non-disabled peers, so it’s important to not push him too hard. He already has to work much harder than a typical kid to spell consonant-vowel-consonant words but he’s doing it – on an eye-gaze computer or by looking at magnetic letters with Granny.

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The major new communication concept we are introducing to Sam is a PODD book, developed by an Australian woman called Gayle Porter, a minor celebrity on the aided language scene.

PODD books are full of symbols that you point at to express yourself. The ambition is that Sam will eventually be able to show us which symbols he wants to ‘say’ (video of a child using PODD here).

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The success of using aids like PODD books is totally dependent on the expertise of the people surrounding Sam. The course I was on last week was an attempt to increase my confidence and knowledge.

I came away enthused. This has huge potential for Sam. But at the same time I’m nervous, intimidated even. I took away three main insights from the course that really highlighted how big an endeavour this will be:

1. Do we have the stamina to do this justice?

A typical child hears spoken language for at least 18 months before they start talking (over two years if you’re Sam’s brother Eli). It therefore follows that we should be modelling use (otherwise called ‘receptive input’) of the PODD book to Sam for at least a year before we expect him to be using it with us. If we were really to mimic normal acquisition of speech, James and I would use it to talk to each other in front of Sam.

At the course we were shown totally inspirational videos of young children communicating, in ways that just would not happen if they hadn’t been taught to use PODD. But … in some of the videos, their mothers (and they were almost exclusively mothers) had modelled use of the PODD books with their children for over a year before their children started interacting with the book.

The level of skill of these women is impressively high – they can navigate expertly from page to page and find symbols really quickly. But even more important is their level of determination. They have dedicated years of their lives to teaching their kids to use PODD books, even when the kids weren’t apparently engaging with them. It is hugely inspiring, but also massively daunting. What if we’re not committed enough? What if we get bored and demoralised, and that means we fail Sam?

2. You can’t learn a language if you’re placed on mute

If you think of the PODD book as Sam’s way of talking, then you have to have it available to him all the time. Otherwise you are effectively silencing his voice. It is close to the equivalent of gagging a verbal child to stop them talking.

We are already guilty of doing this: we introduced Yes and No symbols on Sam’s chair so he can look at these to answer questions. A few weeks ago, the No got puked on, the sellotape got wet and the symbol fell off. Despite daily good intentions, I still haven’t got round to sticking it back on. And I haven’t got round to putting the Yes and No symbols on his wheelchair.

I introduced an opportunity for him to tell me things and them I took it away. Shit.

3. This needs to be a whole family enterprise

On the course I also saw videos of young children using PODD books really competently with their disabled siblings. Eli is really trying to work out the rules around him at the moment and where Sam fits into it: for example, ‘big boys’ walk and babies don’t, but Sam is a big boy and doesn’t walk (cue confused/amazed face). We’ve had discussions about whether Sam can hear Eli talking, because normally people talk back when they hear you, but Sam doesn’t talk.

Eli already talks to Sam on his terms – he says ‘night night’ to Sam every night and waits for Sam to look at him because he knows that’s Sam way of saying goodnight back. When Eli asks Sam a question he says, ‘Sam, can I play with your Peppa toy, YES OR NO’!

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Eli could easily pick up the way a communication book works (the photo above shows him at 18 months getting interested in one), but only if he sees us using it. We have to normalise it within our family, even if the wider world insists on only speaking to each other.

I should reiterate that I really am filled with enthusiasm – the PODD system has been thoughtfully developed and children exactly like Sam have learnt to use it proficiently. But, oh my goodness, what a weight of expectation. Remind me of this blog in a year, when my enthusiasm for pointing at symbols might be wavering and I need to remember that we knew we were in it for the long haul.