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Archive for the ‘Books’ Category

This week I am doing something I thought would never happen again – I am waiting for a new addition to our family to be born. No more children – I have my hands well and truly full with three, but instead we’re waiting for the birth of our golden retriever puppy.

In July I travelled to Germany to give a talk on severe autism and humour. Feel free to contact me if you want to know more. My talk was followed by a paper on autism therapy dogs which included video. These short clips interested me greatly as it showed a different use of therapy dogs than is usual in the UK.

I have written briefly about autism and dogs before and also reviewed a book about a boy and his dog. I was never entirely sure that this was all that relevant for Archie. He’s also now too old to receive a therapy dog from either Dogs for the Disabled or Support Dogs. I did write and ask why they had an age limit and they replied that it was because older children were less flexible. This led to my eyebrows raising a little because with increasing understanding Archie has become more flexible and we can actually reason with him a little now. I then heard that the age limit was applied because the dogs and children were attached (physically) to each other and an older child attempting to run could be too strong for the dog to block. This makes more sense.

Anyhow the video I saw in Germany showed a different type of therapy. Here the dog was being used as a playmate but in way that was structured by dog trainer. Mainly the dog needed to retrieve on command. The video showed children engaged with the dog and interacting in a way they hadn’t really before. It was fairly special and looked more accessible to us. I mentioned in a previous blog post that Archie had been very interested in my friend’s guide dog and had actually interacted with him in this sort of way. This experience coupled with chatting to the  presenter of the talk led to our search for a golden retriever.

Last year I started a new business to fit around the autism research I am currently completing – something completely different – I run a pet sitting business. As a result I have learned a lot in the last year about dog training (am very tempted to train properly if I can’t get funding to continue in autism research) – and am hoping to start applying that practically to our puppy. ABA has been a good background! I’ve been reading up on autism dog training – North Star in the States are the real experts and I’ve found other people taking on training themselves. We won’t be going down the service dog training route – I’m thinking more of a therapy type of playmate. We’ll start simply by teaching the dog to sit or fetch to voice or hand command – hand command being the Archie alternative of course (the breeder tried to demonstrate this to Archie but it just ended up with him sitting along with the dog!) I’ll probably look into Pets As Therapy as well when our dog gets a bit older.

We’ve been very lucky with finding a breeder – dog breeding can be a very murky world indeed, but we’ve found a lovely couple locally who occasionally breed their golden retrievers. They are working dogs so smaller than the show lines and their dogs have a lovely temperament with a few even having become service dogs for Woofability. They are happy to play the litter of puppies Archie’s sounds if we provide a CD so there will be a whole litter desensitised to sudden autistic type noises!

I’m checking their blog every day waiting for news of the birth – then the fun will really begin. 8 weeks to puppy proof our garden, work out training methods and finalise a name. Top of the list so far is Chewbacca (spot the house of Star Wars fans) – it has the advantage it can be shortened to Chewie for Archie.  Any advice – or name suggestions- appreciated!

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A big mystery was solved today. Archie has been waking up at  night recently. A lot. Of course once he’s awake that’s it. I couldn’t work out why. Then this morning he didn’t wake up until gone 7am and he was not happy. He’d missed the streetlamps. It was light and they had turned off. We knew he had a streetlamp thing going on at the moment. I hadn’t realised he was waking up to look at the things.

Anyway mystery solved, although problem very much unsolved. I am expecting to be woken tonight. It was not a good start to the day. It began with screaming, and the screaming continued. He was not happy. We got into a little routine like this:

Archie: nigh nigh

Me: yes lights

Archie: nar

Me: yes lights when it’s dark

This went on for hours. And hours. And some more hours. Until it got dark in fact. I did take an hour or two out this afternoon and slipped into Waterstones. I’d discovered a huge pile of vouchers I’d put in a safe place years ago so I was able to go on a spending spree without removing any money from the bank account. Perfect.

I only bought one autism book. The one shown above Motivate to Communicate!: 300 Games and Activities for Your Child with Autism by Simone Griffin and Dianne Sandler a speech and language therapist/specialist teacher combination. It’s a little gem of a book. Not cheap- I paid £13.99 for it (although it’s a lot cheaper on Amazon, especially if you buy second hand), but packed full of ideas. I often struggle to think of things to do with Archie, I’m not that creative when it comes to play, and expect to be dipping in and out of this book frequently. Some of the ideas are a little too difficult, or need more language than Archie has, but there’s enough in there to get us started. It would never have occurred to me for example to pour lentils through a water wheel, but I think he’ll love that.

We’ll give it a go.

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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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PECS-book

My PECS School to Home Communicator is the book I needed five years ago. Now Archie is in a school with very good home-school communication. We have a book that goes back and forth in which pretty detailed information is provided. However, his previous school was not so good at letting me know what had happened each day, which at times caused problems  – something like this would have helped us all.

 

The book consists of pages of symbols with spaces for writing. Two pages per day. So the teachers can tick which classes the child has attended each day. There’s space to detail any homework and a tick box to say whether the child enjoyed their lunch with space to detail what they have eaten. The second page allows the teachers to tick a symbol describing the child’s mood (with a choice of happy, sad, frustrated, okay, tired and grumpy) with room for comments beneath. Then finally a few lines for things the child has to remember. 

The symbols make it easier for you to discuss the day with your child if you wish.

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The Horse Boy

  

The Horse Boy – A father’s miraculous journey to heal his son’ tells the story of Rowan. Diagnosed with autism aged 3, Rowan’s parents found life becoming increasingly difficult in the years following the diagnosis. Rowan loved being outdoors and so his father Rupert Isaacson, a British ex horse-trainer would often take Rowan out to be in the open. One day whilst exploring the woods behind their house Rowan ran onto the nieghbours property and into his herd of five horses, where he threw himself onto the ground in front of the alpha mare, Betsy. Known to be a little on the grumpy and feisty side, Rupert was amazed  to see Betsy dipping her head and mouthing Rowan with her lips. This is how horses signal submission and was something that Rupert had never seen so quickly before. A few weeks later Rupert visited the United Nations with a group of Bushmen from the Kalahari where he was helping them with land claims. This visit coincided with a convention of traditional healers. Something which Rupert had become interested in after observing healings during his time working with the bushmen. And so he introduced Rowan to the healers and found immediately afterwards that he said his first real words “green” and “green grass” and became calmer. Positive changes, but ones that didn’t last on returning home. However, this gave Rupert the idea of combining horses and healing and so the idea of a trip to Mongolia to visit shaman on horseback was born, and eventually resulted in this incredible journey.

I have to admit I was reluctant to read this book. Not so much because of the healing, I know healers and believe that they can have great effects. It was the byline to the book the ‘miraculous journey to heal his son’ that put me off. When you have a child who is 9 years old and still non-verbal ‘miraculous cure’ books can be depressing reads. Partly because they frame the sort of autism my son has as something terrible, as the worst thing in the world, and as something to be pitied and seen as a tragedy. Which isn’t really how I see my son’s life. However, I was wrong, this book is nothing like that. Early on in the book Rupert makes the distinction between healing and cure, an important one and whilst he clearly wants Rowan to progress, to become toilet trained and to speak there’s no sense of autism being something that needs to be destroyed.

Rupert has the gift of being able to describe the difficulties of autism realistically but with acceptance. I identified with the book so much because I felt his family had taken a similar journey to ours. From slipping into drinking too much as a way of dealing with stress, to noticing the lack of ego that accompanies autism, to coming to some sort of peace with the condition out in the open. For me the moment of acceptance came on Dartmoor, when sat with Archie in the middle of nowhere I could see that he was getting as much pleasure out of the experience as me. And I realised then that life is abut experiences, and autism didn’t need to limit those. This book is a fine example of that. 

Rowan although higher functioning than Archie has so many similarities this is another book where we seem to be sharing aspects of our lives. Rowan’s difficulties in journeys centre around obsessions an compulsions, just like Archie, Rowan adores the outdoors and space, just like Archie. Rowan seems to get some peace from the wilderness – just like Archie. And of course horses. Archie loves riding and its something we’re planning to do more often. 

This book left me with a longing to make a journey. Richard horrified, muttered ‘you’re not going to get me on horseback in bloody Mongolia.’ I reassured him that I wasn’t that ambitious but perhaps we’ll look at a smaller journey. This book has reminded me that we need to pack our lives full of experiences, and autism doesn’t need to limit those.

You tube trailer for the film:

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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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I am, I suspect eventually going to write quite a bit about biomedical approaches to autism. The topic is huge though, so Idreamstime_1996989.jpg thought I’d start with a small bit about gluten and casein free diets. If you decide to go down the biomedical route this is probably where you’ll start. The gluten/casein free (GFCF) diet, and variations on it, appear to help a lot of autistic people, although it must be emphasised, not all. Archie is on gluten free diet, has goats rather than cows milk 90% of the time, and is not allowed anywhere near aspartame, MSG or peanuts. I haven’t heard of anyone else being affected by peanuts, but they affected Archie very badly (he was headbanging concrete; all stopped 2 days after removing peanuts from his diet). I make that point just to emphasise that everyone is individual.

 So where to start if you’re interested in attempting the diet. Probably the place that many start is with the Autism Research Unit in Sunderland. They will test your child’s urine (or your own!) for the presence of substances that might indicate that your child’s gut is leaky, and to look for indications that the diet may help. I’m not going to write any more here, as the ARU provides a detailed explanation on its own pages. Paul Shattock who runs the unit is very helpful. He’s cautious about the claims that he makes for the diet and in interpreting the results of the urine tests, but is very easy to talk to and will give you plenty of help.

 

There are also books of course. First up is Special Diets for Special Kids by Lisa Lewis.  This provides a detailed explanation of the theory behind the diet, together with advice about implementing the diet. It also has many recipes. Further tips and recipes from Lisa Lewis can be found in Special Diets for Special Kids 2.

 

Marilyn LeBreton has written similar books, this time UK focused. (Lisa Lewis is in the States). Marilyn’s book Diet Intervention and Autism provides a detailed description of how she implemented the diet with her son Jack, and identifies the mistakes she made (very useful!). It also provides recipes and a list of suppliers. This book helped me enormously in the beginning. It is covered in flour (gluten free of course) and eggs, and indication of how much I used it. This was followed by a book of  recipes; the AiA Gluten and Dairy Free Cookbook.  AiA stands for ‘Allergy induced Autism"; a charity I’ll write more about another day.

 

So where do we buy this special food? Supermarkets stock a lot these days. Sainsbury’s probably has the widest selection, followed by Tesco. I’ve just come across Dietary Needs Direct, which looks excellent; you can even buy big bags of epsom salts. I haven’t tried Dietary Needs Direct yet, so can’t review delivery times etc, but am planning to put an order in soon, so will report back. In fact as soon as I finish this entry, I’m off to browse.  

 Image: © Annsunnyday | Agency: Dreamstime.com

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