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Posts Tagged ‘PROMPT’

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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