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Posts Tagged ‘severe autism’

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 Unfortunately the links on those posts are now a bit out of date as the camps are no longer being run by Worldwide and so contact details for these camps have now changed.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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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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A video below (another montage) using some words taken from Welcome to Holland, Welcome to Beirut and Holland Schmolland. I’m personally not really into a lot of the prose or poetry that gets passed around about disability. It can be a bit saccharine. Holland Schmolland makes me laugh though.

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When I first made the video I wrote the words below. Reflecting a little, I think challenging can be really very difficult indeed, and I don’t want to downplay how difficult challenging can be. But it isn’t all bad and I think it helps in appreciating the good things in life:

When you have a child with a disability, well meaning people tend to pass on stories and poetry. Reactions to being given these vary from gratitude and recognition to outright anger. They’re not always helpful.

If you have a child with autism you will no doubt at some stage be given Welcome to Holland by Emily Perl Kingsley, Welcome to Beirut by Susan F. Rzucidlo and Holland, Schmolland by Laura Krueger Crawford. These vary in style, and I don’t really identify 100% with any of them but all three share something in common. They say that although there’s an initial shock and although life can remain challenging it also becomes good again.

In our case life has become very good. My son is 10 now, has one word and is always going to be severely autistic. Theres no fairytale ending for him. However, he has always been in the words of Holland, Schmolland ‘a fun loving affectionate boy’. His life is full and active and now we have built up a good support network a lot of fun for all of us. Challenging? Certainly. But theres nothing wrong with that. Some of the best days of my life have occurred because my son has severe autism, rather than despite it. Hes introduced me to a world I didn’t even know existed.

We no longer fear his autism and we no longer see it as a life sentence (although it will certainly be lifelong). His life is not a tragedy or a second class existence. It is a great life. With only one chance at life you do have to take it and fill it full of experiences. There’s no reason for disability to alter that (and therein lies the reason that support and help for families is so essential – in the case of a child with severe autism is really does take a village).

In this video I’ve taken bits from Welcome to Holland, and Welcome to Beirut and Holland Schmolland, so none of the text is mine.

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Sorry I can’t really review The Center for AAC and Autism yet as I haven’t had a chance to look at it. I’ve glanced long enough to get very excited about how interesting it looks. I remain very interested in how AAC can be used to help those who remain non-verbal and feel it’s something we haven’t really yet got to grips with using as well as we should be yet.

My son is pretty flexible in the way he communicates these days, he’ll use photos, pictures on the wall, dragging, reference objects, PECS, the few signs he has, anything really. He recently produced his first word combination that just about represented a sentence.  Non verbal of course, but there to be encouraged. Recently a lot of people have commented on how much he is trying to communicate and I feel we should be doing more to help him.

I was reminded of this yesterday. Yesterday was a Thursday. On Thursdays my Dad usually comes in and makes buckwheat pancakes for all the kids. This is a longstanding tradition dating from the time when number 1 son didn’t eat anything. However, Grandad had things to do yesterday so didn’t come in and I started to cook a big family meal of  spag bol instead. A few years ago this would have been met my much screaming I guess. But instead number 1 son appeared next to me with a pancakes PECS symbol in his had. He then pointed at the pan I was using. I don’t think he really wanted pancakes; he actually prefers spag bol these days, he wasn’t using his PECS symbol to request. He was telling me that I’d mixed up my days and it was pancake day. I just explained that no, Grandad wasn’t coming in today and he was quite happy. No complaint, accepted the explanation and off he went.

Edited to add: I’ve had a look in further detail at the website now. They use an approach called LAMP – Language Aquisition Through Motor Planning – this interests me a lot as it takes into account of the motor issues that  I believe many children with severe autism have. Something that many people forget or underestimate. Unfortunately it looks a little difficult to access training from the UK. I will try and contact the center though to find out. They also use an AAC device that looks absolutely fantastic, but it is thousands of dollars. It’s probably a fair cost given the limited market and costs in designing the device, but it just makes it unaffordable for most.  They do give advice on funding sources (for those in the US), and there are UK funders available (weirdly social service can be a resource for this sort of thing) but I personally would be concerned about spending that much on a device -even with funding-  without knowing in advance whether it was going to work for us.

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pocket

Wow, was my first thought when seeing this. Proloquo2Go is one of the most exciting products I have seen for a long time. An affordable and portable AAC system. All you need is an iPod Touch or iPhone and you’re well away. iPod Touch’s start from a very reasonable £150 -reasonable for an AAC device anyway. You then take a trip to iTunes and download the Proloquo2Go application which currently is available for an introductory price of £84.99 (soon to be rising to £114.99). Hey presto your iPod Touch or iPhone is a pretty powerful AAC device.

I downloaded it today onto my rather ancient iPod Touch. The new generation iTouch comes with inbuilt speakers, but the older models need an external speaker, I managed to find an old, basic portable speaker lying around at home  so have been using that. When Archie came home from school I showed him the application. He picked it up pretty much straight away and was soon asking for “I want apple”.

I’ll spend the next few days customising it so that it’s easier for Archie to find the symbols he commonly uses and I’ll also have a go at adding some photos of familiar items. This sort of versatility is usually only found on devices costing thousands. AssistiveWare who developed the Proloquo2Go application are dedicated to making powerful AAC devices affordable. They say (probably correctly) this can only be achieved by developing software for a consumer, rather than specialist device. Exciting times ahead.

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