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Archive for the ‘AAC’ Category

I made a few mistakes watching this film. I watched it the day before Archie’s birthday, while alone in the house with a bottle of wine, having not had much to drink for six months. I then decided it would be a really good idea to post a sort of running commentary on Twitter. You know, just to ensure total public humiliation. Oh how I laughed the next morning.

Anyway all that aside this is an incredible film. A documentary narrated by Kate Winslet it tells the story of Margret who travels from Iceland to Europe and America in an attempt to better understand and help her severely autistic son Keli. Along the way she meets  Temple Grandin, Simon  Baron-Cohen and  Catherine Lord as well as families living with non-verbal autism who are using typing and letterboards as a method of communication. Towards the end of the film Keli is introduced to a letterboard and now is able to write poetry.

Kate Winslet was so touched by Margaret’s journey that she started The Golden Hat Foundation   ‘a non-profit organisation dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable’. The name for the foundation came from one of Keli’s first poems:

This boy had a golden hat.
The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.
end

Keli Thorsteinsson

If you watch one film on autism this year make it this one. Although I howled my way through the diagnosis scenes this is a film that sends a strong message of hope.  It’s not yet known how many non-verbal people with autism have the potential to type as it’s not something that’s really been tried, indeed it has been discouraged.  The prevalent view of severe autism is still that if you can’t talk you have nothing to say. More that that, you are not capable of having anything to say. Films such as this challenge this view while organisations such as The Golden Hat Foundation provide us parents with support as we explore our children’s competencies and potential. Important stuff.

A challenging film, it’s also quite a challenge to view it in the UK. Currently you need a multi- region DVD player.

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A big first today I think. A really big first.

Archie has always liked looking through video cameras and digital cameras. He’s always liked watching himself on videos. But he’s never made the link between someone pointing a camera at him and then taking a photo. So he’s never posed. Not once. Never in eleven years.

Today he discovered Photo Booth on our new iMac.  He quickly worked out that it captures a ‘moment’ so to speak (maybe because it does a countdown that flashes up?) and he started posing. We have pencils in mouth, shoes, him jumping and waving, his favourite postcard. 15 photos of his favourite postcard.  I’ll put  one below now:

Only yesterday I was trying to get a photo of him at surfing where he posed with the instructors – no chance. We had lots of lovely shots, but no posed ones. Today he pulled funny faces. He even said ‘neee’ (cheese) with a grimace. His brother’s were grabbed. I have my first ever photo of all three of them posing.

355 photos later I made him stop. But wow. It feels like a big leap forward in understanding.

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I recently bought a new iPod Touch for Archie’s use. Well I’m hoping to get it free via a special offer from Apple but I seem to have lost the original box, and I need the sticky label from that to claim. I presume it went in the recycling.  I have the internal bits of the box, and the external packaging the box came in, but no actual iPod Touch box. Bizarrely I think I still have the box from the original iPod Touch we bought many years ago. This is typical of my life really.

Anyway irritations aside the iPod Touch is a dream. Super fast and with an inbuilt speaker it really is a super little communication aid. At the moment I have it running Proloquo2go, iPrompts and Time Timer. I love the Time Timer- it does look just like the big clocks, so very familiar, but often we do need to countdown for longer than an hour (which is where iPrompts steps in). We use it mainly for countdowns  but it’s a good little app for choices and for schedules.

I also have a little pre-school literacy app called First Words which Archie surprised me by spending about half an hour at one sitting playing on it.

I’m off to search for more and in the meantime I’m going to add an ‘apps’ category to my blog.

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One of my favourite poems over the years has been by Shigeji Tsuboi ‘I may be silent, but I’m thinking. I may not talk, but don’t mistake me for a wall’. I titled my first You Tube video, Silent but.

I’ve always assumed that Archie will never speak. I’ve said it often enough on here. I do buy into the Growing Minds idea of  ‘you may think you know what the future holds but  actually you don’t‘ enough to say that I think it’s ‘unlikely’ Archie will ever speak, but really I stopped believing he would talk several years ago.

Until Archie was 8 speech was pretty much impossible for him. He couldn’t imitate, and if you can’t imitate you don’t speak. Then imitation kicked in and I wondered whether speech would follow. It did a little bit. After a couple of years we heard his first clear word ‘Mummy’ (which was nice). And it’s a word he uses a lot. ‘Mummy. Mummy Mummy. Mummy’. He can be very repetitive with it when anxious and I often find a note in the home-school book ‘lots of Mummy’s today’ or am told the same when I pick him up from respite.

Other words haven’t really followed. At Camp Bestival last year :shiver- we’re still recovering: we had a desperate attempt at a new word. We’d decided just to eat at the festival (£££’s) as the thought of cooking and dealing with the three children and a tent was all too much. Luckily Archie had recently stopped his gluten free diet without any side effects so there was a pretty wide choice. We’d found he liked pies and when he asked for dinner one night I took him with me to join the pie queue. Lots of shouting followed. Blank look from me. I had no idea what he wanted. With great effort he twisted his mouth and managed to choke out ‘chi n’ chi’. FISH AND CHIPS. I was stunned, and very proud – he could have as many chi n chi’s as he wanted. I have no idea when he’d even had fish and chips. He’d been gluten free for the previous 8 years.

After this event there were a few changes. No new words as such (‘tu’ for ‘shut’) but lots of new sounds. When Archie regressed he lost his animal sounds, but sssss (snake) and qua qua (duck) reappeared. But still I didn’t really think speech was possible for him.

Then, last week I came across four really inspiring You Tube videos – they show a 12 year old boy with severe autism learning to talk, starting with 3 sounds. They’ve used a variety of techniques; Kaufman cards, PROMPT, and Beckman Oral Motor In a year he’s gone from three sounds to a number of really clear words – and he looks so proud of himself. Really moving and inspiring videos.

The first is here, taken shortly after the therapy started:

There are two others  and then the latest here:

Although on You Tube I feel these videos are very personal so I will check that Dan’s Mum doesn’t mind them being on here.

Anyway I watched them and almost cried. This was the first time I had ever seen anyone remotely like Archie learning to talk. Even if Archie only learned to say 20 words it would change his life completely. Currently he is sociable. He loves to vocalise rather than use PECS but can only really do this with me (anyone else struggles to understand the difference between ‘nanee’ with finger pointed at palm (respite), ‘nanee’ with finger pointed at front door (granny), ‘nanee’ with finger pointed out of window ‘Matthew’ and ‘nanee’ by itself (kitchen)). So he’s limited to conversations with me around the few words I can understand. Sometime this summer I picked him up from respite and one of the workers commented that she loved watching us talk because I understood him and we had a real back and forth conversation. She called someone else over to watch us.

Archie’s respite centre is really excellent, they often think about ways to extend him and completely co-incidentally a couple of days after watching the videos of Dan the manager said to me that she felt someone really needed to help Archie speak. I’m paraphrasing but she said it was unusual to have a child who had so much to say but no way of saying it. This has been my feeling about him for the last 10 years and really what drove my interest in going into autism research. I feel that he (and others I know like him) have a wish to communicate but no tools to do this.

The time and effort it would take to give him a few words means that no publically funded speech and language therapist will ever be able to work with Archie or those like him.  For those in the south-east Sharnay Mail seems to be the person you need. We’re nowhere near her. This summer I have had some brilliant helpers (funded by direct payments) working with me – two SALT students who have just finished their second year. They watched the videos as well and have pointed out things I’d completely missed about positions of the palate and nasal sounds and other things I didn’t fully understand. Archie won’t really engage in therapy these days, but he is happy to try out sounds in return for something he’s requested and between us we managed to get ‘jer’ for ‘juice’ and ‘pi’ for ‘piggy back’ but it’s clear that if we were going to get anywhere with Archie’s speech we need proper professional help and advice. Then in one of those things that happen, where for a change everything seems to come together, a SALT who has been providing bank care at Archie’s respite centre this summer approached me today and said she is very keen to work with him (providing the school SALT is happy) and so fingers crossed, we’ve found our person.

She’s not just going to focus on speech – Archie uses whatever is around to communicate. My favourite was when he found a  You Tube video (he needed to follow a sequence to get to the one he wanted) – this particular video is called something like ‘from Bristol to Cornwall and back again’ – it features a petrol station somewhere near us. Archie found the petrol station, paused it then fetched Richard, pointed at the petrol station, then out the door. It happens to be over the Tamar Bridge which is his favourite place in the world. Well given that much effort to communicate Richard had him in the car within 5 minutes and they drove to the petrol station to buy jelly babies. This was repeated so many times over the following weeks the bank stopped Richard’s debit card on account of ‘some unusual transactions at a local petrol station’. Anyway given this wish to communicate we plan to work on his AAC as well. iPad here we come…… Or maybe even, some words.

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I can’t tell you much about this film/documentary except that from the trailer it looks brilliant. It’s narrated by Kate Winslett and shows children with severe autism typing. Judging from chosen clips it shows all sorts of other more typical behaviours that go with severe autism as well. It’s changed its name since I first came across the trailer on YouTube; from ‘The Sunshine Boy” to “A Mother’s Courage: Talking Back to Autism”.  I think I preferred the original. Hey ho.

It looks as if it will go straight to DVD (following in the footsteps of The Black Balloon which deserved a general cinema release in my opinion, but didn’t get one). You can register to pre-order a DVD here, although it’s not clear whether that will be for a US or UK version.

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A useful link provided by Eric Saliers of Speech-Language Pathology Sharing.

He also writes about the iPad. I was really excited when I saw this new device from Apple as I can see it has potential to become a really useful communication aid for Archie. Both through AAC programs such as Proloquo2go and through typing. There’s also Alexicom Tech; an internet based AAC system. It apparently works offline as well.

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My first introduction to the idea that people with apparently severe autism could learn to type came from reading Lucy’s Story: Autism and Other Adventures when my son was five years old. Since then I’ve come across Tito Mukhopadhyay and then last year Carly Fleischmann.

My personal view is that there are probably many people with apparently severe autism who could learn to type in this way. The difficulty is finding methods to teach literacy or finding a way to shut off compulsions which seem to get in the way of everything.

On her blog Carly says “I think people get a lot of their information from so-called experts but I think what happens is that experts can’t give an explanation to certain questions. How can you explain something you have not lived or if you don’t know what it’s like to have it? If a horse is sick, you don’t ask a fish what’s wrong with the horse. You go right to the horse’s mouth.”  She makes a good point. The reality is that this particular group – those who are apparently severely autistic and who are non-verbal – remain almost unstudied. Research is almost entirely carried out on those who are apparently higher functioning. Very little is known about the non-verbal group at all and many of the comments made by those in this group who do have a voice  (such as Lucy, and Tito and Carly) has been ignored. If you look at the writings of all those with non-verbal autism  they share a lot of similarities  – in particular describing difficulties in movement and in controlling movement. Yet it is rare that this is taken into account when considering behaviours or teaching methods.

When I first read Lucy Blackman’s book I felt I was at last able to find out – from the horses mouth- a little of what it is like to live in my son’s world. It did change the way I responded to him, and it did alter my interpretation of his behaviours. It’s a book I re-read every now and then (along with Autism and the Myth of the Person Alone (Qualitative Studies in Psychology) to remind myself of  the view from his world.

If you haven’t already do watch the videos on Carly’s website. They provide a fascinating insight into non-verbal autism.

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