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Archive for May, 2008

I’m on a roll today. The Floortime Repository: I haven’t really had time to explore this website properly yet, but from what I’ve seen it looks good. It’s a place to find out more about Floortime, share photos and videos and make friends. If you’re interested in finding out more, or doing Floortime then check it out.

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A Real Boy

I was introduced to this book when someone I know vaguely emailed me a link to this Observer article and asked whether I’d written a book with my husband. Well the answer was no, but I could see why I’d been asked. My comment on reading the article was that ‘someone else is living our life’.

 Having read the book, that sense of a shared life is even stronger. David – the real boy of the title – is profoundly autistic. This book is written by his parents Christopher and Nicola Stevens, and describes his life up to the age of eleven.  In some ways he’s quite different from Archie. Archie was the most ridiculously passive and laid back baby and toddler for example, David somewhere at the other end of the extreme. David has quite a few spoken words  but his receptive language sounds as if it’s limited to nouns. Archie has no words at all but his understanding of spoken language has increased enormously recently. Despite these differences every chapter of the book reached out to me in shared understanding. It seems that a little way up the M5 another family is indeed living our life.

 David sings his way through life; so does Archie. Both pitch perfect. David likes the echoes in cathedrals. So does Archie. David likes heights, so does Archie. Archie doesn’t insist on watching people turn the key to start their car but he will stand outside the front doors of people arriving home and refuse to budge until they’ve shut their front door. I showed my husband Richard the bit about David insisting on watching people start their card and we both laughed in the way you do when something is funny and familiar. The experiences of this family-living-our-life was also useful for us. We’ve recently bought a new car. Stupidly we made a beginner’s mistake, we didn’t check that the back windows could be locked from the front. They can’t and so Archie winds the window down and hangs his head out. Richard wanted to put Archie in the front seat. I said he might jump out, Richard said he wouldn’t. I read another chapter of the book. David tried to jump out of the front seat. Richard has now agreed; Archie stays in the back – his drives now accompanied by a chorus of ‘get your head in’, perhaps preferable to being permanently ready to grab him.

David’s parents fear the same things we do. The constant fear that your child might escape and be run over for example. They celebrate the same things we do- a starring role in the school play; and like us, they stopped telling other people as it was never quite understood in the right way. Like David, Archie attends a school where children sometimes die; another similarity in our background that exerts and influence over the way we view life.

They also share many of our feelings.  David’s father writes honestly and openly about his anger at other people’s reactions. His frustration that other’s can’t always see the value in a boy like David mirrors my own when people dismiss Archie as somehow being less worthy than a typical child. David’s dad  comes across as a little bolshier than me. He writes:
Nicky and I had resolved a long time ago that David was going to be included, and that anyone who didn’t like that could stay at home with their curtains drawn.’  I have a well developed rhino hide but I often feel as if I have to apologise for Archie’s behaviour in public, and sometimes I have avoided places because of the potential for noise and shouting but I’ve adopted the ‘Christopher Stevens” approach a little more during this half term week and it felt good. And I’ve decided we’re going to start visiting Cathedrals again.

Of course not everything is identical. We’ve made different choices at various stages. Archie is gluten free for example and has responded well to some part time ABA. But parenting is always like this, different families make different choices and something that works for one child or one family isn’t necessarily right for another. And those little differences don’t really matter when so much of your life is so totally different from mainstream, but so familiar and shared. I read the final chapter in bed with Archie lying sideways on top of me, kicking me every now and then and shouting loudly in my ear. ‘Living with David can be quite an isolating experience’ NIcky writes ‘Apart from Chris, myself, David’s teachers and the other staff who work with him, nobody understands our son.’ And I read that and thought she was wrong, because David to me was so familiar. Those of us with our very own real boys understand.

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ian12Archie’s busy sorting out his birthday present in the photo. A karaoke machine. He may not be able to talk, but boy he can sing; pitch perfect of course.  I didn’t take the photo to show that though, I wanted to grab a quick shot of his t-shirt. IAN- the interactive autism network aims to put USA based researchers and parents together. It’s a great site, and although people outside the US can’t participate in the research side, there’s plenty to read and forum to join.

Which brings me onto conferences. The t-shirt was given away free at IMFAR – the International Meeting for Autism Research. Organised by INSAR (the International Society for Autism Research), the 7th annual meeting was held in London in May.  This was the first time it had been held outside the United States and was a great success. Over 1000 people attended. I was lucky enough to be able to attend for free. I was presenting a poster (if you want a copy please contact me – the poster title was either ‘Interactions of children with severe autism’ or ‘Unexpected competencies of children with severe autism’ depending on whether you read the abstract or the poster) so my department paid.

 

Anyway, it was a fantastic conference. Really exciting. There was a lot of emphasis on gene-environment interactions and several of the talks I attended discussed potential environmental triggers. I had a number of very interesting conversations with Dr Derrick MacFabe, Director of the Kilee Patchell-Evans Autism Research Group in London, Ontario. I found his research interesting indeed and potentially very relevant for Archie.  I’m not going to attempt to summarise the research here but if you have a child who you think has gut problems I’d strongly advise finding out more. The Autism Canada website has a very accessible web video presentation by  Dr MacFabe:  ‘ The Self Centred Bug’  along with various papers and articles that can be downloaded.

I also met Adam Feinstein over lunch (a stand up affair with sandwiches served in brown paper bags).  He runs (or perhaps helps run) the AWARES series of online conferences. These are excellent. They take place once a year with additional seminars taking place during the year and allow direct communication with many autism experts. My first discussion with Donna Williams took place at an AWARES conference. Do sign yourself up. Highly recommended and the annual event has something for everyone.

IMFAR was followed by Autism One a US based conference aimed at parents. I didn’t attend, and managed to completely mess up listening to it by internet radio but the conference presentations are usually made available shortly after the conference. The powerpoints can  be downloaded for free with the audio or video files available to buy.  

 As a final comment on conferences that have finished the previously mentioned online Floortime conference and post conference workshop on sensory processing was brilliant. It was a very effective introduction to Floortime theory and practice. Apparently it will run again soon.

 The workshop on sensory processing reflected the growing awareness of sensory issues in autism. I think this is something that Stanley Greenspan who developed Floortime, has always recognised but perhaps others have been slow to really take board. The renewed interest in this area was evident at IMFAR with an invited educational symposium on sensory integration disorders and many posters considering sensory dysfunction.

 And finally – a future conference. The 20008 NAS Research into practice conference will take place in London at the Novotel West on the 19th and 20th September. It does look good but it’s rather pricey, even for NAS parent members.

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