Feeds:
Posts
Comments

Archive for the ‘Therapies’ 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.

Advertisements

Read Full Post »

If you have a child aged 1-16 years old with a ‘neurological, brain-related condition’ you might be eligible to receive a £500 voucher from the charity Cerebra to fund private speech and language therapy. Your child must not have received speech therapy in the previous six months.

Further details of the scheme can be found on the Cerebra website.

Read Full Post »

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.

    Read Full Post »

    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.

    Read Full Post »

    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.

    Read Full Post »

    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!

    Read Full Post »

    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.

    Read Full Post »

    Older Posts »