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Archive for the ‘severe autism’ Category

I made a few mistakes watching this film. I watched it the day before Archie’s birthday, while alone in the house with a bottle of wine, having not had much to drink for six months. I then decided it would be a really good idea to post a sort of running commentary on Twitter. You know, just to ensure total public humiliation. Oh how I laughed the next morning.

Anyway all that aside this is an incredible film. A documentary narrated by Kate Winslet it tells the story of Margret who travels from Iceland to Europe and America in an attempt to better understand and help her severely autistic son Keli. Along the way she meets  Temple Grandin, Simon  Baron-Cohen and  Catherine Lord as well as families living with non-verbal autism who are using typing and letterboards as a method of communication. Towards the end of the film Keli is introduced to a letterboard and now is able to write poetry.

Kate Winslet was so touched by Margaret’s journey that she started The Golden Hat Foundation   ‘a non-profit organisation dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable’. The name for the foundation came from one of Keli’s first poems:

This boy had a golden hat.
The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.
end

Keli Thorsteinsson

If you watch one film on autism this year make it this one. Although I howled my way through the diagnosis scenes this is a film that sends a strong message of hope.  It’s not yet known how many non-verbal people with autism have the potential to type as it’s not something that’s really been tried, indeed it has been discouraged.  The prevalent view of severe autism is still that if you can’t talk you have nothing to say. More that that, you are not capable of having anything to say. Films such as this challenge this view while organisations such as The Golden Hat Foundation provide us parents with support as we explore our children’s competencies and potential. Important stuff.

A challenging film, it’s also quite a challenge to view it in the UK. Currently you need a multi- region DVD player.

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I went with the younger two boys to choose our puppy today. Although our dog isn’t going to be a service dog – he is going to live in a family with a severely autistic child and therefore it was important to choose the right pup. We’re also hoping that he will become a bit of a therapy/interaction dog for Archie so we were looking for a dog with an excellent temperament.

Entering the world of dog breeding is always a bit of a minefield – anyone will tell you there are some breeders out there that you would do well to avoid. We have been extremely lucky in that we have found an excellent golden retriever breeder very near us. Goldendance Golden Retrievers based in Cornwall really do go the extra mile. We met the Mum when she was in the early days of pregnacy and the aunt and they really are dogs with a lovely temperament. Goldendance take their responsibilities as breeders very seriously and as well as all the health checks work on early socialisation and preparing the pups for family life. The pups are introduced to cats and children, played CD’s of loud noises, handled, have their claws clipped and grow up in the midst of the family home. They’ve taken a CD of Archie being Archie (i.e. a bit loud) and will play that to the pups so they’re all desensitised to him, and we left a blanket behind that had been rubbed in our hair and on our faces so the pup was left with our smells. If you’re looking for a well bred golden I highly recommend checking out their website.

Anyway I had a re-read of Golden Bridge: A Guide to Assistance Dogs for Children Challenged by Autism or Other Developmental Disabilities by Patty Gross, the autism dog bible and she has some tips on picking a puppy. She explains that you need to pick a puppy that is

  • people oriented but not overly dependent
  • confident but not brash
  • brave but not impulsive
  • I found it hard to choose. All the dogs were gorgeous. Luckily Carol, the breeder was available to help. She has previously provided dogs for Woofability and was able to help us select the most suitable dog. I was initially drawn to a very forward dog but Carol explained that he might be a bit dominant and this is something Patty Gross suggests avoiding for a child with autism. We went for the one who was happy to investigate the children’s laps but a little reserved, more sensitive and gentler than his brothers. Carol showed us that he was happy to expose his tummy and happy to fall asleep away from a big huddle of puppies. All signs of a secure little pup.

    So little Chewie was selected, cuddled and named and promptly fell asleep. We’re hoping to go back with Archie soon so we can start to introduce Chewie and Archie to each other. We have four weeks to get the house and garden puppy proofed and then the fun will start in earnest.

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    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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    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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