Different kids, different kinds of walking

If, like us, you take the view that your child’s disability is part of him and try your hardest not to be negative about it in front of him, how far do you take it?

Stella has just started walking. She’s 13 months and since working out how to take a few steps two weeks ago, she has been practising at every opportunity. She has the typical waddle of a baby and is totally unfazed by dropping to her bum every so often. It’s utterly joyful to watch. If you’re feeling at all depressed by the state of the world, I would recommend spending some time watching a sweet one-year-old walk around like a very tiny drunk.

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It feels like a privilege to watch a baby develop these skills and like a small miracle when they keep their balance and toddle off. We, more than most, appreciate the wonder of a baby learning to walk.

And because we are all so amazed we have spent a lot of time talking about it. Visitors comment on it. It can all be a bit of a Stella love-in.

I started to feel a bit uncomfortable about it. How does Sam feel about Stella learning to walk on her own? Is he sad that she is doing something he can’t? When we congratulate Stella does he hear an implicit criticism of him not walking? Was he not really thinking about it much until we all stood around going on and on about how brilliant she was?

I spent a day or two trying not to talk too much about Stella’s walking. Acting as if it was no big deal. Then Eli asked me if I was better at maths than him, and I wondered for a moment if I should soften the blow. But then I decided to tell him yes, I was. And I said I’m definitely better at maths than James. I do have an A Level in maths after all and neither of them do.

It struck me that we can’t spend the rest of our lives not being honest about who is good at what, and what one of us can do that the other can’t do as well. Some of our kids will be good at remembering obscure cricketers (James’s genes), some will be good at chemistry (my genes). Pretty unlikely one of them will be talented at everything – so they will all have to experience that irritating feeling of knowing your sibling is better than you at something. In Sam’s case, the nature of his disability is such that he will do lots of amazing things, but some physical skills will constantly elude him. Eli and Stella will do things that he can’t.

Obviously, accepting that fact doesn’t mean we need to ask questions like, ‘Isn’t it a shame that Sam can’t walk along walls like Eli can?’ (this did actually happen, achieving nothing except drawing everyone’s attention to the disadvantages of being disabled and tainting an otherwise pleasant walk).

I think we have to avoid this kind of direct comparison with all of our children (tricky with Eli’s constant questions comparing me to James, James to Superman, Superman to Spiderman, etc etc). Sam won’t walk unaided, but his school annual review lists ‘walking’ (with a supportive frame) under the list of What Sam Likes. Each child is on their own track and we should only compare them against their progress on that track.

 

Ultimately, I need to chill out and enjoy watching a small child negotiate going downstairs backwards and a four-year-old learn to write. These gross and fine motor skills are easy for parents to take for granted. Do not. See them for the incredible feats of co-ordination that they are. Hold them dear and cherish each milestone.

As a postscript that demonstrates that being an ally to my disabled child is still very much a work in progress, I should mention that I suddenly realised I had written this whole post without asking Sam what he actually thought. So I sat down with him and his eyegaze computer, and modelled what I thought:

‘Stella – walk – great’

I asked him what he thought. He chose:

‘I don’t want to do it’ … ‘Good’

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He then got frustrated that I was delaying him listening to The Faraway Tree.

Fair response. Jog on, Mummy, stop asking me stupid questions about my sister walking…

Playing for laughs (via eyegaze)

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I’ve got three kids! I don’t have much time to write blogs! And we have moved house, again, so things are as relaxed as usual round here.

In amongst the chaos and many, many boxes, Sam has been continuing to use his eyegaze computer. It travels to school with him every day and then he uses it at home for a mixture of entertainment and communication. Sam is building skills in using his eyes and navigating around software on a computer, and much of this is by playing games or other activities that he finds motivating. Like everything to do with kids learning something, anything, it’s best done through play as far as I can see.

We have various activities that he enjoys on his computer; his favourites are, unsurprisingly, stories. Some of which are ‘multiple choice’ where he has to pick the right word to continue the pre-programmed story. Others are computer equivalents of audiobooks where the entire text of a novel is on the computer and Sam can choose the story he wants, select the chapter, and then it is read out to him (in stilted computer voice, but he doesn’t seem to mind). Crucially, he has to keep selecting ‘Speak Paragraph’ in order for the story to continue, meaning that he has to engage consistently.

Sam’s current favourite book to read like this is Mr Stink by David Walliams. We have the actual book and read it to him frequently (actually I don’t, generally because I’m often preoccupied with a smaller child, but others do including my dad who assures me it is great and totes emosh). Other times Sam sits at the table reading it to himself via computer. It’s brilliant.

We hadn’t foreseen quite how fantastic the computer is for Sam and Eli to use together. The laptop is touchscreen and so they can play games like, for example, Splat the Clown where Sam can splat using his eyes and Eli using his finger. There aren’t many activities that they can do together like that, with total parity.

The current hit, however, is the most simple of all. By navigating through various screens within the PODD communication software Sam can get to a page which just has Yes, No and Don’t Know buttons.

Through trying to gauge Sam’s reliability of answering yes or no to questions (Sam doesn’t have a totally reliable yes or no, which is a work in progress for him and something about which I could – and may at some point – write an essay…), James invented a game of asking him sets of related yes/no questions, some of which are totally ridiculous. It is a good way of him practising giving us a clear yes or no when we know he knows the answer. He is definitely making progress on this. The thing we didn’t expect, and which is in danger of slightly undermining our carefully constructed strategy, is that Sam is now giving us the ‘wrong’ answer because it’s funny.

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Oh the laughs! The advent of this game has also coincided with Eli hitting the zenith of his life so far where he can successfully make every member of our family laugh. Let me assure you that watching one of your kids make the other laugh is one of life’s pure joys. Watching Eli make BOTH of the other kids laugh is very, very lovely and makes my heart sing. All the feelings.

So it isn’t just James and me asking the yes/no questions, but Eli too, and Sam bloody loves it.

In this clip I’m asking the questions, and modelling the answer. I think you get a real feeling for how much respect my children have for me.

In this (longer) clip, Eli’s asking the questions and no doubt because I’m videoing, Sam is not answering. Sods law. Then while I’m waiting for him to answer, he navigates out of that page which is autonomy in action, and is the physically disabled equivalent of a child wandering off because they have lost interest. He actually then went to a different yes/no page, through a different pathway in the software (which I didn’t know you could do), and then we continued. His ability to do this, without us mediating, is as pleasing to me as all the chuckling.

In the interests of equity between my kids, I leave you with a video of Eli making Stella laugh. I defy you not to feel cheered by a small child talking nonsense and a baby thinking this is the height of wit.

 

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.

Five years old

Sam has just turned five.

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A birthday means the anniversary of his birth, which is a day we would all prefer to not remember. Apart from the joy of ending up with Sam, few good things happened that day.

But loads of good things have happened since! Each year we make a list of what Sam has got up to over the previous 12 months; achievements noted, developments made and skills gained. Parents of disabled children often talk about ‘inchstones’ rather than milestones. Early on, it became clear that the gross motor skill developments that characterise a typical child’s life were going to be hard for Sam so we had to adjust our expectations and targets accordingly, but success rewards the patient and if you look in the right places there are wonderful things to be found.

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In the year between his fourth and fifth birthdays Sam has done a lot, including:

  • left nursery, started school full-time (settling in brilliantly)
  • learnt to enjoy the affections of his brother and realised Eli can be funny
  • used an eye-gaze computer regularly, playing lots of games
  • learnt to look at Yes and No symbols regularly
  • stopped having any formula milk, eating only home-made food
  • adapted brilliantly to having a night carer
  • discovered his love of the hot tub
  • started getting the bus to school
  • learnt loads of letters
  • reliably recognised the numbers 1-10
  • starting riding his trike
  • met Michael Rosen!

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Sam has really thrived over the last year – he has been healthier than ever and had a lot of fun. We were looking forward to celebrating him turning five with a tea party and a family video of the past year’s best bits…

… and then he really pulled it out the bag!

We have known for a while that Sam recognises most letters and Granny has been diligently teaching him to read. His school has also been working on phonics with him and recently he has been using the eyegaze computer in his classroom to do some work with letters. The day before his fifth birthday, Sam came home with this message from his teacher:

‘Sam used his eye gaze [computer] to independently word build. I asked him to spell out bat and several other ‘-at’ words at the end and he did so no problem!’

If that isn’t a bloody milestone, I don’t know what is. Love that clever boy.

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