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.

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12 Thoughts About Physical Disability prompted by Stephen Hawking in The Theory of Everything

I went to see The Theory of Everything this week, a film about the physicist Stephen Hawking and his relationship with his wife Jane. Hawking is diagnosed with Motor Neurone disease at the beginning of the film and becomes progressively more physically disabled just as his scientific career is taking off.

It is brilliant. Eddie Redmayne as Stephen Hawking is extraordinary and his portrayal of encroaching disability is utterly convincing. Many aspects of his life are common to any physically disabled person but his experience is particularly relevant for people whose intelligence and cognition are unaffected.

It is a salutory reminder of why some people in the disabled movement use the phrase ‘not yet disabled’ to describe able-bodied people. We are all just one diagnosis away from being disabled.

How Hawking’s increasingly weak and uncooperative body affects his life and his family are portrayed well and are familiar, hence why I spent a bit of time weeping in to my sweets (£8.47 worth of pick-a-mix to be precise. I KNOW, it’s a reaction against never being allowed sweets as a child).

There are obvious differences between a genius physicist losing motor function and a small boy being born with brain injury that leaves him physically disabled. Sam is actually very interested in space, but let’s all agree he hasn’t yet written a cosmic book that has sold 9 million copies.

But there are similarities, so in the manner of a Buzzfeed article, here is a list of 12 thoughts about being (or caring for someone who is) physically disabled prompted by The Theory of Everything:

  1. Physical disability can be a bit shit, and everything would be easier for Stephen Hawking and for Sam if they weren’t disabled. This is very sad, and it’s easy to become overwhelmed by the sadness, but resist because…
  2. It’s possible to live a good and full and useful life if you are disabled. This may mean you redefine Time or it may mean something less ambitious, but it can be a life well lived.
  3. It’s not necessarily that easy for the family members who surround a disabled person (Hawking was keener on physics than he was on making things easy for his wife) but people will do a lot for those they love, and will do it happily (until they, like Stephen, divorce you for their nurse. Let’s brush over that for now).
  4. Kids and siblings are great. They tend to be cheerful and accepting of disabled people and like riding on wheelchairs.
  5. Male carers or helpers are really useful – physical strength is hugely valuable if someone’s body doesn’t work very well. Such strength can enable things to happen, such as overcoming the fact that…
  6. Wheelchairs and beaches are inherently incompatible.
  7. Working with a good speech and language therapist can make all the difference.
  8. It’s all about communication. It is totally crucial to find the right system of communication, find the right person to make it work, and make sure it keeps working.
  9. Avoid stairs. If that means having a bed in your kitchen, so be it.
  10. Get help, from friends, family, volunteers. Employ people if you can.
  11. If you’re the carer for a disabled person, don’t lose yourself. Jane Hawking’s love of Iberian poetry was subsumed by Stephen’s obsession with black holes and his refusal to allow others to help. It needn’t have been that way.
  12. Felicity Jones, who plays Jane Hawking, looks 15 years old at the beginning of the film, and about 18 years old at the end when apparently 30 years have gone by. Perhaps caring for a disabled person bestows some magical anti-ageing properties? I’ll come back to you on this.

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‘I feel sick’

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I am having an incredibly boring couple of days. Sam has vomiting and diarrhoea. It has unfortunately coincided with the days when we do not have help from nannies/carers and Eli ‘settling in’ to a new nursery. Obviously Sam can’t go to school. It’s not really possible to look after both kids so James had to take yesterday off work. As always, my work gets pushed aside.

Any parent is familiar with the curious mix of boredom and worry that accompanies having a sick child. Eli’s developing speech means he can now tell you a lot of what he thinks or feels, so when he woke up vomiting on Saturday night he could scream ‘I sick!’. Over the next few days he could tell us that he felt sick, that he needed a cuddle, that we needed to be gentle when we changed his nappy. It’s not fun seeing him ill, but amazing that he can be so eloquent about it.

That’s the first time we’ve nursed a speaking child though an illness – we are much more used to a child who is unable to say how they feel or what they want. Sam is often sick; when he vomits we have to wait and see whether it’s a sign of illness or just another bit of reflux. It became clear yesterday that he was ill and couldn’t go to school. So ill that we stopped all food and he had small amounts of dioralyte (though his gastrostomy tube) while watching hours and hours of TV. Today he woke pale and quiet and withdrawn. By mid-afternoon today he’d had half a banana (whizzed up in the blender and pushed through his feeding tube) and was complaining that Bob the Builder was unsatisfactory entertainment so hopefully he’s on the mend.

James and I know Sam so well we can generally tell by his movements, facial expressions and noises whether he is happy or not, whether he’s in pain or content. But we never know what’s coming – he can’t tell us he feels sick before the inevitable puke. He can’t tell us he’s hungry to indicate his tummy is ready for some food. So we just have to guess, and sometimes that means what goes in comes right back out again. So. Much. Wiping. And entirely homebound.

Earlier this week Sam had a general anaesthetic in order to have some tests. Other people can have this scan without sedation but Sam would move too much. It meant a whole day in hospital while we prepared for and then he recovered from the anaesthetic. Sam’s five weeks in hospital after he was born has left us with a strong distaste for the artificial light, overheated rooms and lack of control of a stay on a ward. It never gets any easier leaving Sam after he’s been anaesthetised (he’s had two operations related to his gastrostomy), sitting around eating M&S sandwiches while wondering what’s going on, worrying that he’ll wake up and won’t know where he is. It’s horrible when they do say you can go and see him because he’s confused and upset, and looks tiny in the massive hospital bed.

One of the questions his assigned nurse had asked in the morning was whether Sam could talk. We said no, but that he understood speech. Throughout the day we told him who each new person he met was and explained what was going to happen. Sam hates any kind of fiddling (he cries when he is weighed, even though this only means being held by me while I stand on some scales) but after 45 minutes of ‘magic’ cream on his hands and a lot of warning, he was surprisingly okay about the cannula being put it. They took blood at the same time as preparing for giving him the anaesthetic. Sam has a yearly blood test to check he is getting all of the necessary nutrition, something he finds traumatic. At least this reduced the number of times he’ll need to be pierced with a needle.

In the afternoon, as he recovered and waved his bandaged arm around, he started complaining that the entertainment was not up to scratch. A sure sign that he was on the up. He then whinged when the nurse came near him with a pulse/sats monitor. His nurse understood what he was trying to say, ‘You said he couldn’t talk, but I’m in no doubt what he means.’ Indeed.