A couple of further links for those interested in Naoki Higashida after my last post.
(1) An article in today’s Guardian by David Mitchell: Learning to live with my son’s autism. Although, as always in these articles there are some areas where my view differs a little it’s a powerful piece of writing, with of course many shared moments. This is something fairly typical, when meeting parents of children with special needs you find that although you might be virtual strangers your lives have so many shared moments you’re practically family.
(2) A link to video about Naoki Higashida by the Facilitated Communication Institute of Syracuse University, I write so I am alive. (You need to scroll down, although they’re all worth watching). Thank you Lisa from Aut2Communicate for the link. On watching the video at first I thought that Naoki was very much more organised than Archie, for example he was catching a ball and appeared calm and pretty much in control of his actions. Then Naoki started running and jumping, and hitting and biting himself and he looked very much more like Archie. Something I have noticed very recently is that as Archie progresses with the talker, and routinely produces longer sentences he is also becoming a little more organised. He can copy out words now, and he will sit at the table and concentrate on his homework (once we’ve managed to drag him away form his iPad). For a while now I’ve felt that one of Archie’s greatest problems has been his lack of oganisation and his slavery to involuntary movement and actions. It’s hard to complete a thought if it is always interrupted by the need to run and jump. It will be interesting to see how his emerging calmness and ability to concentrate develops. I am hopeful that it will continue to improve and lead us to exciting new places.
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.
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.
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)
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.
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.