Archive for January, 2010

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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This has been on my mind a lot this weekend. I promised Archie last week that on Friday after school I would take him to the newsagents to buy jelly babies. Although he has severe learning disabilities he understands days and jelly babies  so come Friday he was rather keen.

The shop is only around the corner, I go there four or five times a week, although usually alone.  I thought about taking his Crelling harness as it leaves me with both hands free if I use it, but he has been so good recently I decided it wasn’t necessary- and anyway he was keen to leave and was kicking off and I couldn’t find it. So off we set. On the way he spotted a tree had been cut down and said ‘nee narn’ (tree gone I presume) which I was mightily impressed by – two word approximations are brand new. We reached the newagents without incident. Some nice walking.

Once inside I picked up some jelly babies and Archie grabbed a huge Twix. I made him swap it for a smaller one which triggered some shouting as he thought I was saying he couldn’t have the Twix at all. Soon sorted and nothing too major. We went to pay. At this stage Archie spotted the room behind the till and made a dash for it. This sort of reaction is utterly impulsive/compulsive and he has very little control over it. I grabbed him before he’d taken more than a stride and pulled him back to the till. I told him that it was not Archie’s room and he needed to wait while we paid. I kept hold of him so he couldn’t make a leap and he waited quietly occasionally making an ‘uh uh’ sound. At this point it is worth revisiting the old days of shop visits. Until very recently he could not wait at all. Literally not a second. I would have to throw money at shopkeepers, and if I prevented him running into a backroom we’d end up with a full on down on the floor screaming headbanging tantrum. Now although he can’t stop the initial compulsion, once stopped he is usually very good, as he was on Friday.

And the response from the shopkeeper? He well and truly got the hump. He glared at Archie in a ‘I’m watching you boy’ type way. Archie of course ignored him, so he carried on glaring. The customer behind me started saying ‘Oh dear, oh dear’. I presume the shopkeeper wanted an apology from him. Not so easy when you can’t talk.  I said ‘he can’t talk so he doesn’t understand’ – I usually say this, because most people realise that if a 10 year old can’t talk something is going on and combined with the language I use when speaking to him and any signing or PECS – people work it out but the glaring continued and didn’t let up. The shopkeeper ruined my rather special ‘nee narn’ moment, but he also lost my custom. I won’t go in there again.

I’ve noticed this happening rather a lot recently. Archie engages in  some minor social transgression (standing next to, rather than behind someone is a queue is a common one – I allow him because if he can see the front he waits nicely, if he’s stood behind it’s all arms and legs flying and lots of screaming) and someone gets the hump. He also gets challenged a lot directly; a pointed, huffy “excuse me” for example. Of course he fails to reply which only increases the harrumphing and lemon sucking. I’m never sure how to respond to this. I am used to the inbreaths, muttering and teeth sucking that can accompany a full blown meltdown (and will happily don the crocodile skin and ignore it, people are too scared to approach anyway) but I’m not very used to him being told off when he is (for him) being exceptionally good. I suppose that’s the problem. He does look entirely -dreadful word- “normal” and joe public seems unable to understand that someone who looks normal can have a severe learning disability and severe autism. Check out the photoblog – you’ll struggle to spot which brother is severely autistic. And explanations don’t seem to result in any acceptance by the other person. You just get told ‘well he shouldn’t do that’. Oh OK then.

After eight years in the autism game I’ve sort of come to the conclusion that there’s little point trying to educate people – they either get it or they don’t but I do need to come up with some way of dealing with these complaints when he is behaving well. I don’t really want to do a big negative ‘he’s severely learning disabled’ routine as I recently discovered Archie knows he is autistic and so I don’t want to talk about his autism and problems in a negative way in front of him. I’m not really keen on putting him in a “I have autism t-shirt” although I can understand why people do (if it interests you there’s a whole load to choose from here, some stroppier than others) but I’m not averse to something more subtle. I’ve had an ‘I have autism please be patient’ badge from Treating Autism before. BIBIC do individual plastic identity cards whilst the NAS do information cards. I’m never quite sure how I could manage to hand out an information card whilst holding onto Archie, maybe it is time to pin a BIBIC identity card to him.

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I’m really pleased to say that horse boy camps are getting really popular. They are running a lot of camps this year. Details in the WorldWild newsletter. Keep up to date by signing up to receive the newsletter at the WorldWild website.

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I’ve just come across this;  skiing4all. Run by Anna Wegner, a British Psychologist and Austrian qualified ski instructor she offers skiing programs for individuals with cognitive disabilities. These can be combined with activities such as pony riding and swimming. Looks well worth checking out. They mention using a ‘PECS on the slopes’ system which sounds intriguing.

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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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I’ve just come across MouseTrial. It’s computer software that aims to increase vocabulary. Can be used for fun or as part of an ABA program.

We’re not running any sort of program at the moment, but my son has a slight (understatement) obsession with various household objects and would probably really enjoy this. I think it’s something that should be at the right levels as well. I’ll try him tonight. English accents too which is a bonus for those of us in England. It costs $29 or $10 for individuals modules and you can play online or via a CD. You can try it for free.

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Just a really quick post as I have to dash off to work. I know a lot of people have been waiting for this for a long time. It is now possible to undertake training to become an RDI consultant in the UK. More information on the RDI connect blog.

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