Friday, June 04, 2010

Seeing things through different eyes

Wow, I have neglected this blog! I changed the name to something exciting and then didn't come back again. Sorry. I will attempt to do better.

Needless to say, we've been busy! I have been very busy writing features for various magazines. I have a real-life health feature in this week's Take a Break (available until Wednesday) and have more due to appear in the same magazine in the coming weeks, as well as Grazia, Cosmopolitan, Mail on Sunday YOU and Woman Alive. Next week, I aim to start a new blog as a companion to my writing. It will contain some 'behind the scenes' commentary on some of the features, together with snippets from press releases and my research etc. I promise to keep this one going a lot better than I have of late at the same time!

The biggest family news since my last blog is that William has finally been diagnosed with Asperger's Syndrome. There is a lot to come to terms with and think about and this will, no doubt, be the focus of many blogs over the coming days and weeks. The main thing I want to say about it today is that I am fast learning Asperger's is NOT a disorder! It's a different way of perceiving the world. William has a higher than average IQ, is creative and very funny - so funny, I think he should be a comedian! He is very intuitive in some ways but he is also has obsessions with things, especially Thomas the Tank Engine and 'disasters', likes things to happen in a way he predicts and struggles with the unpredictable nature of human social contact. He is a walking encyclopaedia on his 'chosen specialist subjects' and can read as well as his 10 year old sister. He has a photographic memory for words and only has to be told a word once and he has it. He would read as well as me if he was told the words, but, of course, wouldn't understand the content of 'The Girl With The Dragon Tattoo.' One of William's biggest challenges is that he is very sensitive to sensual over stimulation. In fact, over stimulation is the wrong word. It's not just that sound is louder and colours brighter. Some children with Asperger's and other forms of autism can actually feel noise as pain and I wouldn't be surprised if Wills feels the same, especially the kind of noise that vibrates. William is very stressed at our church and I fear we may have to find one that doesn't have the bright lights and vibrating organ we have. You can't simply expect him to behave if the environment is physically uncomfortable. Getting the balance right between normal childhood naughtiness and where he really is too uncomfortable will be a challenge. One thing we have already learned is that he can't cope with stopping an unfinished game or TV programme. He really gets very stressed. It's much easier on everyone to give him enough notice of bed time or going out for him to finish his activity and since we've adapted our home life to include that it's all been a lot easier here. I'm looking forward to finding out more ways of dealing with the more challenging aspects of Asperger's - especially how to cope with his 'melt downs.' We had a few of those today when I had to stop a game, for example to change a leaky bag and I have the pinch marks on my arm to show how distressed this can make him. He's always sorry after he's calmed down and doesn't want to react in that way.

Along side his Asperger's, we learned this week that William has delayed cognitive processing. This means that it takes him longer to respond to an instruction or a question. All the small bowel transplant recipients are showing the same and the team now believe it's due to dependence on the artificial, intravenous feed, TPN, when the brain is still developing in babyhood and toddlerhood. William will need longer to complete activities in school and for exams etc. It is heightened for him because he always comes back with complex and complicated responses to things and likes to be funny. It takes him a bit longer to put all that together. This is something else that is very important and useful for us to know about. It's sad that those years when he was so unwell have led to some impact on his development but it's a minor one and to be expected really. As with the Asperger's, my job now is to teach him to make the very best of his talents and abilities and how to cope with his differences and adapt around them so he can make the amazing contribution to the world that I know he can. I wouldn't want to change anything about William. He's a little character and his differences are a big part of what makes him that way.


loulou said...

I wonder how it feels to have a diagnosis now? Does it change anything really in a positive way or does it perhaps act as a ceiling? I never know whether I see it as a label or an acknoweldgement? The good thing I think is having an underdstanding and the ability to educate others about Aspergers, which is great. Hopefully for William it means his potential is endless now that things can be set in place to help him be part of the shared social world as much as possible if it benefits him, not for the benefit of society. Its all about accomodating his needs and hopefully now some targeted support will see him continue to blossom as the bright button that he is!! I am also pleased to hera how well your writing is going, from strength to strength. William has super role models around him and does so well considering the multitude of battles he's conquered and will continue too. Lovely post xxx

Sarah's Mum said...

Diagnosis or no diagnosis, he is still Wills and we love him xxx
You've got a womderful perspective on it all Sarah and I so admire you for the way you cope with anything life throws at you....and it does!!! Lots of love xxxx