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.

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Living in Camberwell

I wrote this article for a local publication and so it is pretty specific to our particular corner of south London: it first appeared in the Autumn 2014 edition of Camberwell Quarterly, the magazine of the Camberwell Society.

Living in Camberwell with a disabled child

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My son Sam will soon be five years old and has lived in Camberwell and Peckham his whole life. Sam is bright, loves books and is developing freckles in the summer sun. He also has cerebral palsy which severely affects his ability to sit, stand, eat, drink and walk.

Following his birth in Camberwell during a winter of snow, Sam lived in three different houses in SE5 and then, last year, the big move to SE15 – so we have spent his life pushing him around Camberwell and learning how to navigate this bit of London with a disabled child.

We have been lucky to live so close to Sunshine House, on Camberwell Church Street. This beautiful building is exactly what a child like Sam needs: inspiring architecture, totally accessible for a buggy or wheelchair, stuffed full of dedicated therapists and useful doctors. I spent many hours enjoying the walk down Camberwell Grove and through the churchyard, then regretting the weight of a laden buggy as I huffed all the way back up to the top of the hill.

We were also fortunate in Sam’s first year to stumble across Camberwell Grove Early Years Centre. Parents of disabled children frequently struggle to find adequate childcare for their complicated kids, but the manager of this nursery welcomed Sam with enthusiasm and I was able to return to work. Sam has been going there for almost four years now and his younger brother will start shortly. Collecting Sam when he is playing in the lovely, huge garden with children he’s known for years is something to treasure.

In terms of activities for Sam, Camberwell is poorly served. Now Sam is four and uses a wheelchair, I cannot think of any local playgrounds that have any equipment that Sam can enjoy. He loves books, but he can’t get down the stairs to the children’s section of Camberwell Library. So we often travel to the Horniman Museum which puts on wonderful story telling sessions on Sundays. Sam is usually the child laughing loudest and longest at an elaborate tale of how the lion got his roar.

Transport is a mixed bag. The new ramp and lifts at Denmark Hill station are a great development, and it is entirely our fault that we moved one month after they were completed. Our nearest station is now Peckham Rye which has a labyrinth of stairways which make it pretty much inaccessible for a wheelchair user.

As a result, it’s usually most convenient for us to drive. Unfortunately Southwark has a hardline policy on blue badge holders, meaning that – unlike in Lambeth – we can’t park in resident permit bays. Given that Camberwell is increasingly dominated by controlled parking zones, this often means we circle the area looking for an elusive disabled bay.

We work hard to include Sam in as many aspects of local life as he can be, but it’s complicated. It’s easy for disabled children and their families to become isolated because they struggle to be included in ‘normal’ activities. There is a real need for us all to fight for more inclusion for disabled people.

In the meantime, the world gets better by small acts of kindness and friendship. We appreciate and enjoy Sam having a place in the communities of Camberwell and Peckham, where mothers talk to him in the playground and shopkeepers return his smile.