The Reason I Jump

I don’t listen to Radio 4 that often. Archie likes music in the car, and Radio 4 therefore isn’t really tolerated. Luckily my parents only listen to Radio 4 (unless Folk Night is on) and they have been enthusiastically relaying this week’s Book of the Week.

The Reason I Jump: One Boy’s Voice from the Silence of Autism is written by Naoki Higashida – a severely autistic boy living in Japan who has learned to communicate using a letterboard  (a link to the roman version, rather than the hiragana, but same idea). Translated into English by the author David Mitchell and his wife K.A. Yoshida it promises to offer a fascinating insight into autism along the same lines as that provided by Lucy’s Story: Autism and Other Adventures. Excerpts have been read on Radio 4 this week- and if you are reading this around the end of June may still be available on iPlayer.

I’m very fond of Japan – I lived there for a year, and even taught in a special school that catered for children with autism and learning disabilities – so I tend to read a lot of (translated) Japanese literature. This book is going to be a particular treat (and I’ll probably cry when I read it). It’s on order.

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Combining words

Just a quick link really for this post, from the Speak for Yourself blog. They make the point that typical children are given at least 2 years before they’re expected to combine words, whereas children given AAC devices are often expected to produce sentence quickly. They then go on to talk about it being better to have to combine words yourself rather than use pre-programmed phrases (I agree with their comments on the whole btw, even if the occasional pre-programmed phrase does no harm, on the whole I think it is better to learn to produce those phrases from single words).

I wanted to add to this my observation that Archie really did need some time just using his device at a single word level. He has explored the device himself, he is now very familiar with it & with that familiarity he has begun to produce more complicated phrases. I’ve been struck by how typical his language development with the device has been, when compared to the speech development of his two younger brothers.  He went from single words to comfortably combining two words to longer phrases – now they can be very long indeed. He’s also made corrections, so whereas ‘not’ always used to appear at the end of a sentence it’s now, more often than not, found in the correct place. None of this has been achieved with intensive therapy, his development has taken a very natural course – the vantage lite just providing him with the voice to do that.

Talking to everyone

Archie’s been busy with the iPad camera this week. I’ve been a favourite subject (slightly traumatic, I prefer to be behind the camera)

A&C

 

There are times when the difference the talker has made to Archie’s life hits me between the eyes, this week has been one of those weeks. The first moment was when my Mum phoned. Archie grabbed the phone from me and said “Friday granny sweets Joseph Louis school”. He was reminding my mum that Friday is tuck shop day at Joseph and Louis’ school and he wanted some sweets. What he said wasn’t all that surprising – but the fact he was having a telephone conversation was nothing short of incredible.

The second was today. Archie was given a role on the school council and  formed part of an interview panel at school interviewing candidates for (I presume) teaching jobs. No silly questions about dinner parties with anyone living or dead, he just wanted to know favourite foods. That he can take part in interviews these days is somewhere beyond incredible. It shows in simple terms how much the talker has given him.

Surprise!

There’s a line in Priscilla Queen of the Desert (well the musical version anyway) where Tick introduces his son to Bernadette with a ‘SURPRIIIIISE’ and Bernadette falls over. It’s funny and it’s been replaying in my head this week quite a bit.

First time was when I asked Archie his address. And he told me. His address isn’t stored as a phrase, he had to find each word separately, which he did without difficulty. He knew his house number as well.

Next surprise was when I sat down with him to read bloody Biff and Chip (I clearly celebrated too early when Louis finished Biff and Chip a few years ago) with him this week. I decided to point to a few words to see if he could read them by finding them on the talker. Mum, Joe, dinner, carrot, eat, and, home, finished were no problem at all. He found them without hesitation. After one page he’d had enough of reading, but still I was impressed. This was done with a typical teenage reluctance to engage in homework (one eye on the iPad).

I thought it time to update with a couple of short videos, these were taken today. Notice how he’s now playing whole phrases after he’s found each word. Also ‘not’ seems to have moved into the correct position in the sentence. And there’s a little joke where he says yes to something he knows he isn’t getting. Notice as well how at ease he is producing these longer sentences.

Decisions decisions decisions

chatting at the beach

For the first ten years of Archie’s life I probably made pretty much every decision for him. Until he was about 5 he had really no concept of having a choice and would treat every suggestion as a command. To complicate matters further it took until he was about 10 before he had a functional yes and no. By this I mean it took that long until he had a way to communicate yes and no and an understanding of the concept of yes and no, in other words an understanding of what yes and no actually means. It’s hard to imagine not understanding the words, but they’re abstract and for a long time Archie didn’t. The upshot of this was that we couldn’t have simple ‘do you want  to go to the park’ type conversations because Archie had no way of saying yes, or indeed no.

Gradually we developed a simple way of offering choices; ‘would you like this or this – using a picture or symbol to offer the choice’. If Archie wanted neither option then we would start a guessing game. It was slow, frustrating and often resulted in no resolution. Once an understanding of yes and no developed it made running through options easier but we were still limited to me having to think of various options while hoping to stumble on an acceptable one. Archie’s choices were limited to my imagination and he struggled to communicate a choice without me first offering it.

The talker has made all this much easier, and this improved communication has resulted in less frustration and Archie being able to have more agency over his life. We had a fine example of this this week. I booked a surf for today as soon as I realised that Archie had a non-pupil day at school. It seemed ideal, his brothers  would be at school and it would occupy the first day of the half term. Except last weekend he went down with a really grotty cold. He’s been insisting on going to school but has been coughing and spluttering all week and really didn’t seem to be 100% fit to be dunked in the sea in February. In the past this would have been problematic. If I had said something was happening it had to happen, or a massive meltdown would result. There was no way to negotiate an alternative or even explore what Archie actually wanted to happen. I had to try and guess. And, as might be expected, frequently guessed wrong. The talker has made all this easy. By Wednesday when he was still spluttering everywhere I reminded him he was booked in to surf on Friday, but asked him whether he wanted to go given his cold. Different day came the reply.  I was able to check ‘do you want to surf on Friday?’ no. So I asked when. Sunday. Okay Sunday, but he clarified further. Downham Saturday surfing Sunday.  He wants to surf the Sunday after he’s been to respite on the Saturday. And all decided without a meltdown or me having to tie myself in knots trying to guess what he might want to happen.  The day pinpointed all I have to do now is keep an eye on the surf forecast. If it’s forecast to be flat we’ll use the talker to renegotiate.

Pegs

The sun showed its face briefly this week, and Archie appeared talker in hand, very excited; washing help. I’ll admit I was confused, and at first thought that maybe he had spilt something. Upstairs. Nope I was still confused. A 1, 2 followed by a jabbing point out the window clarified it for me, Archie was  telling me that our next door neighbours had hung their washing out on the roof terrace (1,2 representing the 2nd floor).

I was faster today when he appeared with a pegs upstairs. And he was delighted, and joined me by the roof terrace door to watch the neighbour’s sheets, grinning from ear to ear. I have always struggled to understand the obsession with washing lines, but it’s been there for many years.

Slightly more conventionally Archie seems to have suddenly turned very teenage in his interests, although maybe a couple of decades out of date.  After hearing a CD in the car he has been playing The Stone Roses pretty much non-stop. Yesterday I found him playing Waterfall on the iPad and iPod simultaneously.

 

Life Post Merlin

Forgive me, it’s a stupid title I know, but I remain overjoyed that this Christmas period has continued to be defined by the death of a fictional TV character, rather than anything autism related and decided to celebrate that once more. For anyone concerned, Louis has made a full recovery from the shock of Arthur’s death and has taken to amusing himself doing ‘dead Arthur’ impressions, rolling his eyes back complete with a slither of white eye showing. Oh yes, as he said, he’s so sensitive.

So it really has been calm here; unlike the sea. We’ve had some painful walks along the beach where the sand has been whipping across our faces. We did have one hairy moment five minutes after the photo below was taken when Archie ended up cut off by the tide, marooned on a small circle of sand . I wasn’t too worried about him, he was risking a soaking rather than anything more dangerous, but I was very worried about the five thousand pound (plus) of talker hung around his neck and dangling over the sea. I moved fast, very fast. LU

2012 has been a great year for Archie, he’s made enormous progress in so many areas and we remain incredibly grateful to the anonymous donor. Now, with Christmas complete, and being December the 31st it seemed a good time to think back about what I have learned this year, the first full year of talker use.

  • Archie’s language is not intact. At least I don’t think so. I know some children who are non-verbal have found a communication method such as typing and revealed themselves to have pretty much intact language. This is not the case for Archie. Although now he is an active user of language it is developing at great speed, rather like a toddler going through a language explosion. In this year we have moved from a preferred use of one word; e.g. black to mean black car, or granddad’s car, to fairly routine use of longer phrases e.g. granddad black car handbrake up stop. His language development seems very similar to Lucy Blackman’s. She too started aged 13, with AAC.
  • The talker can be used as a tool for humour. Archie has always had a wicked sense of humour, some of which can be incredibly annoying (e.g. taking people’s glasses off & sniffing people). With the talker he can enjoy his joke, by telling us he is going to do something naughty (such as take his head teacher’s glasses off) without having to actually go through and do it. Well sometimes. He had my glasses off about an hour ago, I’ll be back in contacts tomorrow.
  • Archie has his own way of saying things. His use of ‘not’ at the end of a sentence continues and seems pretty much part of him. School tomorrow not. Sniffing Tom Daley not. DEFINITELY not that one (at which stage Archie falls about laughing his leg off).
  • Better communication leads to less frustration and a calmer Archie. a.k.a stating the bleeding obvious. Obviously being severely autistic Archie has his difficult moments (he found the long unstructured summer holidays hard), but the talker really has cut down on a lot of shouty moments. He doesn’t have to shout with frustration now because we can easily understand him.
  • The talker allows Archie to chill out and chew the fat with the rest of the family. Ha! I couldn’t think how else to word this, but staying with the Tom Daley theme I discussed this during the Olympics.
  • The talker has really encouraged a blossoming relationship between Archie and his brothers. Something I wrote about recently.
  • Surfing really does make a difference. This year Plymouth City Council funded some sessions for the kids attending Archie’s respite centre. These were a huge success; videos here; here and here. Archie surfing even ended up on the BBC website.
  • Big waves are the best waves. I have always known that Archie prefers to be out in a decent swell than in flat conditions, but this year he’s been able to make that very clear big waves good. Yes indeed.

And so what are we hoping for in 2013? I don’t really spend much time making Archie wish lists these days. He’s happy and progressing faster than he ever has before and I prefer to see where we end up. If I were to predict an area where we might see some real progress this year it would be in literacy. Yesterday he did type his name on the iPad (with help) and I know he is now actually holding a pen and copying letters at school. He is also starting to read, using the talker to read aloud words he is given.

archie name

So 2013 will no doubt involve more language and more surfing. Definitely more surfing as Archie is already asking when the next session will be. Winter doesn’t stop him.

In other news 2013 is going to be the year where I start to work on a film, in part inspired by Archie. I have been lucky enough to work with a fabulous writer and director, Ruth Platt-Stavrik and we think we have pulled together a really very special script. As Ruth explains in a blogpost that may well be the easy bit. What’s life without a challenge?

Happy new year to everyone. I hope 2013 is a good one.