The highs and lows of family life, as a mother pieces together the effects and possible causes of her son's fairly severe autism.
Huw has an original slant on life, which means that it often takes unexpected turns, not only for him, but also for his dad, mum, and his sister, Rhiannon Lucy. Huw, from age four to his mid teens, is at the centre of the book, surrounded by the conversations and reactions of various members of his family, their friends and his wonderful troop of carers. The book proceeds at a cracking pace, trying to keep up with Huw as he explores the world around him, with little regard for health or safety.
Meanwhile, his Mum particularly is concerned with important questions. How can they get more sleep? Can a change in diet help Huw speak more and run around at a slightly slower rate? Is there more than one reason why Huw won't use the bathroom? Why does he keep ripping his clothes and what is it that is so terrifying about the theme tune to Postman Pat? Notes at the back of the book offer some explanations, along with the more useful scientific findings around such questions. A key insight emerges as time goes on, and seemingly disparate theories on the causes of autism and epilepsy are drawn together by one underlying, possibly primary, factor.
This is a book for the many families like Huw's, who may be looking for some answers, but it is also a vivid account of what it is like to live on a day to day basis with fairly severe autism. It is a good-hearted and sometimes heartbreaking odyssey through the unpredictable, an unflinching look at the realities the family faced, through a range of emotions from distraught to hilarious and back again.
Video by www.sarahadairillustration.com
Great!! Huw is at the beach with Arthur the big black dog, and Lucy, Maria, and Maria's Mum and Mum. There's the sea. It is very, very bright. The sun is right on top of it. Arthur and Huw run along the beach, which has lots of round stones as well as sand. The sea is very near. They run and run and run.
Huw comes to the end of the beach and the sea is on two sides. He takes off his clothes. He doesn't need swimming trunks because this is the sea and there aren't any people to shout at him. The water is FREEZING. Huw is going towards the biggest bit of sea. The waves are quite big, too, but soon he is away from the beach, and there are no more crashing sounds, just swaying up and down. Huw's feet are off the ground – and he is swimming and swimming.
WHATEVER YOU DO, DON'T SING THE POSTMAN PAT TUNE
Sunday, 26 May 2019
One of the great mysteries to us as a family, was why Huw occasionally found the theme tune from Postman Pat so utterly terrifying. Those of you who have pledged to buy 'Your Life as I Knew it' can find out why now, (as you probably would turn to the notes immediately, if the whole book was in front of you). Those of you who haven't yet pledged, please do so - or share with someone who you know…
All Vegans and Vegetarians please take note
Wednesday, 15 May 2019
Collage made by Huw in 2017. Huw's visual sensitivities, mentioned in my last post, have produced some lovely abstracts over the years. As for my belief that he was born with autistic traits, here is an extract from my notes on the text of 'Your Life as I Knew it'. If you google the effects of B12 deficiency and how it affects our ability to excrete toxins, you may begin to see why the causes…
Early Signs of Severe Autism
Thursday, 2 May 2019
This is an extract from a sketchbook where I noted some of Huw's early symptoms. It was meant as a guide for parents, and in the first 'window' I was careful to add the proviso that behaviours which are shortlived, and don't appear all at the same time, are likely to be due to other problems. When did it all begin? is a question parents still ask - amid continuing fears and furore over vaccinations…
Monday, 22 April 2019
Some of us who aren't autistic have slightly differently sized feet, but for those who are autistic, the size-difference may be considerable. This may not be noticeable when they are a child, but as they enter teenagehood, it's worth bearing in mind, especially if normal procedures for buying shoes are out of the question. My son developed a fear of shoe shops, which meant that measuring his feet…
Epilepsy and Autism
Monday, 1 April 2019
One of many pictures Huw made using his beloved Sesame Street Art Workshop - were these multiple images the result of the absences he was experiencing (every seven minutes, at the age of twelve)?
There were signs, looking back, but we (all the experts as well as myself) didn't make the connection. It was too easy to assume that they were the signs of autism: absences manifest as a disengagement…
Newly changed after his fall in a river, Huw is tempted by more water....
Sunday, 10 March 2019
'Stop, Huw! Oh, Nohhhh. Stop him!' Mum yells.
Huw is running round the fountain. The edge of the fountain is not very high. He can step up on it to jump in, but he is running round and round the fountain and it is hard to turn and jump.
'You go one way, I'll go the other,' shouts Lucy.
Then Mum and Lucy go different ways and they are both coming at Huw from each side and - Oh, no! They…
Friday, 22 February 2019
Most of 'Your Life as I Knew it' is about when Huw was at home with us, but at the back of the book I have written notes which fill in some of the gaps. There is quite a lot about my attempts to modify Huw's problems through diet, and there are also other sections, which might be helpful to anyone struggling with daily pressures similar to the ones we faced. After Huw left home, I continued to make…
Thursday, 7 February 2019
Like many marriages in families with an autistic child, mine came to an end - when Huw was six years old and Lucy was eleven. For three years or so afterwards, I was too busy to think beyond the odd crush, so it was a nice surprise when a meeting at a fancy dress 'do' ended in what I hoped would be a long term relationship. Simultaneously, flirtations with an American artist were becoming more serious…
Time and Space for Lucy
Wednesday, 30 January 2019
Siblings of children with severe autism need some space to call their own, and some time alone with one or other of their parents, too. (Rhiannon) Lucy was no exception and here she is on a much-needed day off from school, captured by me in my favourite medium and style. Beneath is an extract from 'Your Life as I Knew it' which gives one example of why she needed a break sometimes. My gratitude…
(A bit) more Sleep!
Wednesday, 23 January 2019
From NOTES on 'YOUR LIFE AS I KNEW IT'
Not long after Huw's brain scan, which was normal, there was a somewhat hectic appointment with the hospital consultant. The wait had been longer than expected and I'd made the mistake of giving Huw an outsized flapjack from the hospital cafe to eat. This had the effect of catapulting him into manic activity, even before he had finished eating it. We entered…
Huw wants to talk
Monday, 14 January 2019
Welcome to all of you who have recently supported my book, 'Your Life as I Knew it', about family life with Huw, and also to all of you who joined us earlier, and those who may be joining us shortly. Thank you for helping with a publication very dear to my heart and which I believe ought to be available to everyone. Near the beginning of the book, I have a strong altercation with a Speech Therapist…
Where we lived in Wales
Monday, 17 December 2018
There are many snowy scenes in 'Your Life as I Knew it' so I thought a view from one of our windows would be appropriate for this time of year. Many thanks to those of you who have backed the book so far. Please spread the word - it's a good read, and hopefully a real insight into life with someone growing up with fairly severe autism. Huw is such a character and it has been a privilege…
Huw's Dressing-up Phase
Friday, 16 November 2018
As you will find in 'Your Life as I Knew it', Huw's relationship with clothes could be described as experimental. Here he is wearing one of my dresses. Other favourites were his sister's giant monster slippers, which he wanted to wear to school. Shoes and shoe-shopping involved high drama at times and we only found out one of the possible reasons recently. It's all in the book, so please…
First weekly update
Thursday, 8 November 2018
Hello and thank you to all of you who have already committed to buying my book. I hope you like this image, which I made when I was doing a project on autism for my art degree. This gicle print is on textured paper and it combines a photo of Huw at his favourite lake, atmospheric artwork from me, and a poem entitled 'The Still Small Voice', which I wrote at the time. Although it's quite a sad poem…
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