The temptation to interrupt

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If you have a child who doesn’t follow the typical path it’s difficult to have a sense of where they will end up. I don’t mind this too much; I don’t find it that useful to have conversations about what Sam may, or may not, be doing in ten years time.

But everyone looks for role models for themselves or their kids, and some sense of where the path might be going. Disabled adults are rarely found in mainstream media, so I was lucky recently to be at a study day where a panel of five Alternative and Augmentative Communication (AAC) users answered questions from the audience using high tech devices. Three of the five used eyegaze, exactly like Sam is learning to. There is a video here.

It is important, and inspiring (not in an inspiration-porn kind of way) to see people using AAC to talk so eloquently. THAT is where we want to aim for.

But I was really struck by something that one of the panellists – Kate Caryer – said at the event: she pointed out that people sometimes think of a communication aid as a gift or a toy, that users should feel grateful their local authorities have provided. Whereas it is in fact a human right.

Respecting Sam’s right to communicate means his device needs to be there, in front of him, as much as possible, not just when we decide we can fit it into his daily life. We need to make sure the batteries are charged, and the mounting arm is ready when it is needed. We need to force ourselves to fit it even when it feels like a bit too much effort on a busy day.

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But more profoundly, we have to be ready to hear what is being communicated. We have to alter our own culturally-constructed notion of how conversations work.

I find it uncomfortable to leave gaps in conversation – I feel I have to fill them. I first realised this when we lived in the Middle East and would spend time with Syrian friends who were happy to sit companionably with long pauses in conversation. I had to teach myself to enjoy this time and not fill the gaps with mindless waffle. This was made easier by my rudimentary Arabic.

Someone using a communication aid to talk is probably going to take longer, more time than a typical talking person. At the study day, it took time for the five individuals there to answer questions from the audience: they need to hear the question, navigate (with eyes or fingers) around their communication device to find the vocabulary for what they want to say, and then speak it.

This often makes conversation with an AAC user slower than we are used to, and I for one need to force myself to accept that rhythm of speech. This means waiting the extra 30 seconds to see what your conversational partner wants to say, and not interrupting. Sam isn’t able to shout immediately, in the way that Eli does frequently, ‘Mummy, I was actually in the middle of talking when you interrupted me!’

I frequently screw up even when I am trying my best. I realised recently that after a conversation with a woman who uses a communication aid, I had said goodbye and walked away. I hadn’t waited to see if she wanted to say goodbye, or even if she had anything else to say. I felt a little sting of shame when I later realised. We can all have good intentions, but we don’t always behave as well as we’d like.

If you manage to fully embrace the alternative pace, there are rich rewards. A few years ago when Sam was just learning to look at Yes and No symbols on the armrests of his wheelchair to answer questions, we went to a local park and met some friends. One of them, who happens to be a nurse, crouched down in front of Sam so she was at his level, asked Sam if he was enjoying his new school, and then waited.

Sam slowly and deliberately looked down at the Yes symbol. It was the first time he had totally independently answered a question from a stranger, and it happened because she asked the question in the right way for him.

If we accept that people with communication difficulties have a right to talk – and therefore to be given the support, equipment and training they need – then they also have the right to be heard. And we, the people taking our communication skills for granted, have to learn how to listen. Not make assumptions about what is being said, or interrup, or fill the gaps in conversation with inconsequential waffle, but actually listen.

I mean it’s a good tip for life generally – many marriages could benefit from partners actually listening to what each other are saying. But rather than forcing the AAC user to navigate their way through their devices to say ‘Stop interrupting me’, maybe we should just take it upon ourselves to get our own houses in order.

 

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How we learn to talk (part two)

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Recently I complained that Eli talks too much. I caught myself saying it twice, to two different people, in one week. Granted, James was away and I was really feeling the intensity of being the primary carer of all three kids, but what was I thinking?

Eli is, in the nicest possible way, a chatterbox. Some days he will barely stop talking for hours at a time. It’s a charming mixture of questions, statements and analysis of the varying powers of superheroes.

Eli was relatively slow to talk; he just said ‘oh no’ repeatedly for months and as he turned two the health visitor was a bit concerned about his lack of speech. I wasn’t worried. I had spent hours with speech and language therapists with Sam and so knew something of the basics of learning language. I could tell Eli knew loads of words and understood what we told him. He made loads of sounds. I had a feeling he was just biding his time until he started talking.

At two-and-a-bit he started saying more words. Within a couple of weeks he was putting words together. And by the end of the month he had three-word sentences. It was like a miracle, like you could see his brain working and his body co-ordinating itself with an ease and fluidity that was beautiful to watch and hear.

Since Sam will probably never talk, I promised myself that I wouldn’t take it for granted. And I haven’t – there have been numerous occasions when we have been so very grateful for Eli’s ability to tell us what the matter is when he’s ill or what happened at nursery that day.

Meanwhile there have been many times when we have been so very sad that Sam can’t tell us what the matter is, or what he has done that day. We find ways round it by school telling us each day what he has done, and recording messages on a button that goes to and fro with him, but it’s no substitute for independent communication and it’s a clunky way to converse.

We, and his school, are trying our best to give Sam the means to ‘talk’. We continue to model his PODD book with him (a communication book with lots of symbols to represent vocab), and give him access to his eyegaze computer regularly. When he returned to school after Easter, his carer/nanny printed out photos for him to take to school of all the things he had done over the holiday. I programmed new pages on his computer so he could use his eyes to describe what he had been up to (with photos) for his friends and teachers. (SO proud of myself for managing to navigate the software to do this, with only a couple of exasperating moments when I felt like chucking the computer out the window).

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Sam loved all of it – he enjoyed showing people photos of Eli squashing him in the park, and telling them about our easter egg hunt.

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But these things are manipulated by us. We choose which photos to include and which anecdotes to tell. Sam can’t tell people what HE wants to about his holiday he can only share one of the moments we chose to include. Who knows whether we have included the bits he most enjoyed? Yesterday we were talking about when we all visited an outdoor exhibition of massive light sculptures and Eli’s best, most important memory was of the Smarties Grandpa gave him, rather than any of the sculptures. Kids experience the world differently to adults, and often remember the bits we think are incidental.

Or we (adults) don’t realise what kids want to do. When Eli is climbing a tree, Sam will make complaining noises until we ask him if he wants to climb the tree? He then looks at the ‘Yes’ symbol on the arm of his wheelchair, and so we take him out and lift him up into the branches. A year ago he wouldn’t have been able to communicate this clearly something we hadn’t thought of. Or perhaps we weren’t able to interpret what he was trying to tell us.

We continue to hope we can give Sam the means to express what HE wants to say, rather than what we think he wants to say, and he is making progress with the ways he has available.

Each week at school Sam helps create a sentence and they work on the sentence each day, putting the words in the right order. On one of the first days back at school this term, staff in Sam’s classroom navigated him to the Places page of his PODD book. He had to choose the place to complete the sentence ‘I went to the …’ and through careful yes/no answers as he worked his way through the various symbols with an assistant he chose Library: I went to the library.*

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School wondered if he really meant library. We hadn’t mentioned going to the library in our various messages to school. Maybe he was confused, or hadn’t really meant library. After all, his communication can be hard to interpret.

But HE HAD GONE TO THE LIBRARY. The day before! So he had told his class something we hadn’t!

Before Eli started talking it was all in his head, he just had to work out how to say it all so we would understand. Sam clearly has so much to say, but no reliable way to say it. In some ways this makes me sad. In many ways it makes me anxious – it is our job (with various professionals) to help him find ways to talk to us and I feel the weight of the responsibility.

But mainly I feel hopeful. Sam has started to use the communication systems we are providing and has begun to talk independently. It will take time, but he’s making progress. He went to the library!

 

How we learn to talk – part one is here

* Note how many symbols there are on this page, which is one of many in the PODD book. Imagine the skill needed to identify which symbol you want on that page and then communicate it to the person you are talking to using only your eyes. Imagine if you got distracted or confused midway through and needed to start again.

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.

Music: finding a beautiful voice

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Sam has just started music therapy. After an initial assessment with a charity over two years ago, we finally made it to the top of the waiting list. As the days get longer, we are seeing more and more of Croydon as we make our way to the purpose-built Nordoff Robbins centre. for weekly music sessions

We were a bit nervous. We know Sam likes music – one of the comments from his school report last year was that he loved choir, something we were really pleased about, not least because by definition choirs involve a lot of noise. Sam still has a reflex that causes him to physically startle at loud noises. He has found this upsetting in the past but is learning to manage the shock.

And we watch him enjoying music at home – one of the most reliable ways to make him laugh is for his uncle to play the piano while telling jokes, in the style of Flanders and Swann.

But all of that didn’t necessarily mean music therapy would go well, especially after a full day at school and then an hour in the car.

At our first session we were met by our friendly music therapist, who I will call C. She suggested that she take Sam off into the music room while I wait in the entrance room. What?! Let Sam be taken off into another room without me? With someone he (and I) has only just met? Are you nuts?! That has literally never happened before.

But of course I was too embarrassed to say all that – no-one wants to be a mollycoddling, helicopter parent unless absolutely necessary. Sam was totally relaxed. C seemed confident. So I said meekly, ‘Great, yes, I’ll just be here’, trying to portray a sense of calm and normality.

Then I sat in the waiting room, sending my husband texts saying things like ‘Sam’s in music therapy on his own! Nervous!’, praying that Sam didn’t puke on C. I was straining to hear what I could from the music room but I couldn’t hear any complaining, just a bit of distant guitar, then a drum, then some singing.

After half an hour he reappeared looking pleased with himself and C said it had gone really well. I was even more chuffed than Sam.

Our second visit followed the same pattern, only this time at the end of the session I heard Sam crying from the other room and when he came through the door he was crying sad, hot tears. C said he had got upset when she sang a goodbye song. As we chatted he calmed down a bit, but each time we talked about leaving or saying goodbye the tears started again. And on the way home he sobbed on and off for twenty minutes, which is really unusual for him. He gets upset and he cries sometimes, but almost never for that long.

This week we went for our third session and the same thing happened at the end, but with less dramatic sobs and a quicker recovery. C is taking it all in her stride, but I started to worry that Sam just doesn’t like music. It seems unlikely since he’s happy when we arrive and enjoys music at school, but maybe…

I was talking to another music therapist while waiting at the centre, and he said it was lovely that C and Sam were getting on so well. We had a conversation about how much Sam ‘talks’ i.e. not at all, but he makes all sorts of noises that we can interpret as happy, sad, annoyed or bored. He said it was lovely to hear Sam singing with C, and that Sam has a ‘beautiful melodic voice’, which struck me as an incredibly accurate and particularly lovely thing to say about a child who can’t use his voice easily.

I’m hoping Sam’s approach to music might be like his acclimatisation to the school bus; he started cheerful, then found it all too much, then settled into happy contentment.

I’m pretty sure he really likes C and her music, and is just really upset that every week it finishes after only half an hour. In the absence of Sam being able to tell me, I’m keeping my fingers crossed. Maybe he is finding his voice.