Ben’s Dad

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If I could undo Ben’s disability I would. I don’t have any time for the idea that it is part of some plan, or that Special People have Special Children, or that this is the way Ben was meant to be. Ben was a healthy, fully able baby in my womb, then his brain was damaged and now he is disabled. When he is older he can tell me what he thinks, but in my view it would be better if he wasn’t disabled. There is almost nothing that has followed from his birth I wouldn’t give back in order for him to be able to walk and talk. Of course this becomes more and more theoretical as he gets older, and we can’t imagine him any other way.

Ben is disabled, and he can’t walk and talk. But Ben is happy and healthy so we must get on with it.

However, one thing that I know now, that perhaps I wouldn’t have known quite so clearly without Ben’s disability, is that I married the right man. I am lucky. For this I am extraordinarily thankful.

Last week marked the anniversary of James and I getting together exactly fifteen years ago, when we were undergraduates spending too much time watching Neighbours and drinking too many pints of cheap lager. In the following ten years we had many adventures and a lot of fun, travelling frequently and building careers.

Then, five years ago, when Ben was born everything changed. I have no doubt that I wouldn’t have made it through the first year of Ben’s life relatively unscathed if I hadn’t had James. We were worried and sad. It seemed hard to have fun. But at least we were doing it together.

There is no equivalent to the shared responsibility of parenting, the person who is as interested as you in some domestic anecdote about something your child has done, who is as pleased as you are with a small development. I have taken on the majority of day-to-day care and co-ordination of Ben’s life, but James is always there listening, commenting and encouraging. James can do everything for Ben that I do and will do it happily, be that getting up almost every night with him for 6 months when I was breastfeeding newborn Max, or feeding him and giving him cuddles.

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I do not take this for granted. Statistics about relationships of parents of disabled children are chilling: you are more likely to separate if your child is disabled. The combination of demands (physical, financial and psychological) and stress are too much for many couples.

I can’t help think this isn’t helped by many professionals addressing themselves almost exclusively to mothers. We have had numerous experiences in hospitals, clinics or at home where people talk to me and ignore James. They do not ask his opinion, or literally talk to me about Ben with their back to James (for example, about the risks of an impending general anaesthetic).

But it is a fundamental misunderstanding of the dynamic of our family to think James isn’t interested or involved in Ben’s day-to-day life. It is not only insulting to James by minimising his role as Ben’s father, but also puts more pressure on me as the one who should know everything and shoulder most of the responsibility.

It also doesn’t account for my notoriously unreliable memory versus James’s ability for near-perfect recall. Or that James combines all this parenting with a full-time job. Or that, for example, he’s taken a day of leave from that job to be sat on a hospital ward being ignored by a junior doctor.

Sometimes I look at my kids and I almost can’t cope with the amount that I love them. I felt like this about my younger sisters when they were small – I sometimes almost crushed them with cuddles. Like yesterday when I collected Ben from school; I walked in to his classroom and he was so obviously happy to be there, and then saw me and looked like he was the happiest he had ever been.

The only thing better than that feeling of fierce pride and overwhelming love is witnessing it between your husband and your children. He loves them as much as I do, and we are all Team Ben.

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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 Ben communicate with us and everyone else.

Communicating is one of Ben’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’.

Ben has the intellect to express far more sophisticated ideas and desires than this – but he needs the tools. So we are working with Ben’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, Ben is doing brilliantly. In last week’s meeting someone pointed out that (PROUD MUM ALERT) Ben’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 Ben 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 Ben 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 Ben. 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 Ben. 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 Ben’s brother Max). It therefore follows that we should be modelling use (otherwise called ‘receptive input’) of the PODD book to Ben 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 Ben.

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 Ben?

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

If you think of the PODD book as Ben’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 Ben’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. Max is really trying to work out the rules around him at the moment and where Ben fits into it: for example, ‘big boys’ walk and babies don’t, but Ben is a big boy and doesn’t walk (cue confused/amazed face). We’ve had discussions about whether Ben can hear Max talking, because normally people talk back when they hear you, but Ben doesn’t talk.

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

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Max 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 Ben 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.