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Archive for September, 2010

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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I’ve written quite a bit on here about Horse Boy Camps. Unfortunately the links on those posts are now a bit out of date as the camps are no longer being run by Worldwide and so contact details for these camps have now changed. There’s a new website and Facebook group. Your first choice of contact in the UK is probably Gillian Naysmith. They’re in the process of setting up several permanent sites in the UK and are also now running training camps.

Rupert Isaacson is still overseeing the  camps and Karen Thursfield is still a camp leader in the UK so although there will be changes the concept of the camps shouldn’t have changed that much. I have noticed that the age limit has changed. Previously there was no age limit; in fact an adult attended our camp, but the camps are now only open to children aged 2-12.  This seems a shame and a rather arbitrary limit (what is it with autism and animals? No service dogs for the over 11’s, no horse boy holidays for the over 12’s). I promised Joseph one of Archie’s brothers after the camp this year that he would be able to go on ‘the best holiday ever’ again next year. It seems as if it might be the last year given that Archie will be turning 12 next year. The majority of children on our camp were the same sort of age as Archie and it worked pretty well so I’m a little surprised by that change.

I will keep an eye open for similar ideas suitable for older children and will of course post anything I find on here.

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We’re quite lucky in that Archie was relatively easy to toilet train. My Mum made it her goal when he was 4 or 5. Joseph was about 2 at the time and I was pregnant with Louis so I was happy to hand that job over. It took quite a long time – we had to try and keep him on the toilet until something happened so it was a bit hit and miss but we got there in the end.

We were fortunate that Archie had enough control over his muscles and enough understanding that toilet training was achievable, but it fairly often isn’t for children with severe autism or learning disabilities. In this case the PCT should provide incontinence products. Many PCT’s have imposed arbitrary limits on the number of nappies allowed each day leaving families short . You generally can’t just pop down to your local supermarket for larger nappies and they’re very expensive.

This problem was brought to David Cameron’s attention by during a pre-election chat on Mumsnet where he promised to look into the issue. Meanwhile Mumsnet joined forces with Every Disabled Child Matters to launch a campaign calling for an abolition to ceiling limits on nappies set by PCT’s.

Mid August there was some success. The Secretary of State for Health wrote to the Chief Executive of the NHS asking him to tell PCT’s that: ‘Pads (nappies) should be provided in quantities appropriate to the individual’s continence needs. Arbitrary ceilings are inappropriate’.

Further details can be found on the Every Disabled Child Matters website.

I heard from a friend earlier this week that our PCT are still setting limits so I emailed the continence service yesterday asking them to confirm that they are aware of this guidance. I will post the response here when it’s received.

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Chewie our newborn puppy that is.

I’m still not entirely sure how we’re going to train him. Now he’s been born we need to start researching this. I spoke to the breeder tonight and in between playing the puppies a CD of fireworks, babies crying and hoovers she is going to play a CD of Archie shouting and screaming. She’s very dedicated- it will be quite an unpleasant CD. Of course the idea is to desensitise the pups.

After that I’m not sure. Basic training and socialisation to start of course. Followed perhaps by more specific retrieval training. A friend told me today about PAWS (Parent Autism WorkshopsAnd Support) run by Dogs for the Disabled where though  a series of three workshops they teach you to get the most out of your family pet. To attend your child needs an autism diagnosis. I contacted them this morning and received a very quick reply  with further information. I’ve decided to attend the training in Cornwall sometime in the Spring. Venue and dates to be confirmed. There are already confirmed dates and venues for workshops in Liverpool, Kenilworth, Wytham (near Oxford), Uxbridge and Evesham.

I’ve created a new category for the blog – Dog training- where I’ll try to provide regular information about our attempts to train Chewie. I don’t claim any expertise in this area. If you have any please get in contact!

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About a year ago I registered for the Springwise weekly newsletter. It’s the one email newsletter that I read religiously. Cup of coffee in one hand, computer mouse in the other – it’s a moment of peace and quiet.

I was overjoyed in last week’s newsletter to see that someone has finally opened a mobile shoe shop. I have been suggesting this for years. If you’re in or near Berkhamsted (I’m not unfortunately) you’re in luck.

Shoe shopping was always hideous for us when Archie was younger. He would kick the staff when they tried to touch his feet and curl his toes in the measure making it impossible to find his size. We also had the issue of waiting. He’s actually fine now – the last set of shoes were fitted on a busy day and the only problem I had was preventing him from marching straight out of the shop when the fitter suggested he had a walk around.

Haircuts were similarly hideous when Archie was little and that problem was solved by school. They have a hairdresser visit every six weeks. We send him in with his £5 and he arrives home shorn. For many years I hoped they would make a similar arrangement with a shoe shop –  alas no – but if you’re in anywhere near Hippity Hop Shoes your life might just have become easier.

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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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