When Archie was first diagnosed we could only think about life in neurotypical terms. Everything we did was with the aim of working towards normality, and a life we recognised as worthwhile. We researched (and tried) therapies, we read up on ways to encourage speech, to work on language to search for the answer (we thought there was one).  As the years passed it became obvious that normality really wasn’t going to happen. Archie is 12 now, still non-verbal and still requires a lot of day to day help.

By the time Archie was 8 it was becoming pretty clear that his life is likely to be a severely autistic one and we needed to start living it. We needed to deal with the fact he was severely autistic and stop waiting for him to be magically high functioning enough to suddenly be able to access mainstream activities. We also began to understand that a life doesn’t have to be so-called normal to be worthwhile – he has a good life now and there’s no reason that cannot continue. And so since then, slowly, we’ve increased the activities we do. It seems like a small thing, but when I became a Mum I imagined doing things that were fun with the kids, not hours of autism therapies and so we began to drop those and focus instead on experiences. After all isn’t this is what life is about – a series of experiences?

Which brings us onto surfing. With Archie being non-verbal with challenging behaviours  and limited awareness of danger- surfing didn’t exactly leap out as a potential activity. We’d never have tried surfing with Archie  without the surfers going out of their way to encourage participation. Initially he was able to go on a few trial sessions at an annual event called Breaking the Barrier - which to our surprise he loved, now he goes out regularly with a local surf school, and occasionally even with me (yes, the surf school has been giving us lessons).

Sometimes he rides on a an extra long board and the surfers can pull him up to standing, other times he goes out on a 9 or 10 foot board, gets pushed into the wave and then is on his own. He’s quite happy to scoot along on his tummy or kneel and with a lot of encouragement and yelling from us will occasionally try to stand.

He gets a real buzz from it. These days  I tend to think his autism isn’t such a problem in itself, it’s a pain when it stops him being able to do things, especially fun stuff-of-life activities, so surfing is one of the things that has made a real difference to his life and all our lives.

We’ve been surfing this morning, and life is good.

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

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

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.

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.

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.

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.

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.

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!

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.