THANK YOU AND GOODBYE - A LAST EXTRACT
Friday, 30 July 2021
FOR LEGAL AND FINANCIAL REASONS IT HAS NOT BEEN POSSIBLE TO PUBLISH THIS MEMOIR IN FULL. HOWEVER, MANY EXTRACTS AND NOTES CAN BE READ IN THE UPDATES I HAVE POSTED HERE OVER THE LAST TWO YEARS, AND FOR THOSE OF YOU WHO HAVE BEEN FOLLOWING THEM, PLEASE SEE BELOW FOR HOW THE STORY ENDS.
IT IS PROBABLE THAT 'YOUR LIFE AS I KNEW IT' WILL NEVER SEE THE LIGHT OF DAY SO PLEASE TAKE THIS LAST OPPORTUNITY…
The Last Shop
Monday, 2 November 2020
A semi-abstract Huw made using Sesame Street's Art Workshop when he was 9. Five years later, his obsessions had got completely out of hand:
Mum and Huw go to one more shop. It is a big shop that sells clothes and DVDs. It is full of bright little lights and sparkly things as well. 'Jingle bells' is playing. Huw can sing this song. Huw sings it, and people smile. Mum has…
GOING DOWNHILL RAPIDLY
Monday, 12 October 2020
Because things were deteriorating at home, I went to see Huw's teacher:
From Notes on the text:
Back to PECS*
She wanted me to use PECS cards with Huw at home to teach him to use the loo properly. I said Huw always used the loo properly at home. Apparently, he wasn't doing so at school. She showed me a row of PECS cards instructing him how to do things in a certain order.…
WHAT HAPPENED IN THE 1980s??
Thursday, 17 September 2020
Me in 1984
Why is there now a hundred-fold Increase in Autism Spectrum Disorders compared to diagnoses in the 1970s?
Better Diagnosis (but that's not the only reason)
The DSM (Diagnostic and Statistical Manual of Mental Disorders) was updated in 1980 to give a wide range of features associated with autism. This undoubtedly led to more people being diagnosed as on the autistic…
MYSTERIOUS GUIDANCE - True Story!
Thursday, 10 September 2020
Huw around the time we needed a new car - after an emergency with the old car (recounted in the book).
Breaking down has a whole new dimension to it, if young teenagers and an autistic child are included in the mix. This time was not as dramatic as when I left the cap off the oil tank in the old car's predecessor and the enginge caught fire at the top of the highest mountain pass where we…
MOOD SWINGS, WEIGHT-GAIN, ADDICTIONS, INSOMNIA, HEADACHES, DIZZINESS? TRY THIS:
Wednesday, 29 July 2020
Foods containing E620, E621 up to E625 and anything containing the words extract or concentrated (this includes most breakfast cereals and non-squeezed fruit juices)
Supermarket bread containing pea protein, soya protein or anything-else-protein (obviously don't avoid protein itself!)
Powdered soups, stock cubes, bouillon, carrageenan (all hydrolysed products)
Article in The i
Friday, 19 June 2020
For Carers' Week, I wrote an article about bringing up Huw and how vital the support of professional carers was at various stages in our family life. Here's the link to the article:
If you know of any family in similar circumstances, or anyone who would just like to know more about autism towards the more severe end of the…
LOCK-DOWN: YOUR CHANCE TO CHANGE YOUR CHILD'S DIET
Tuesday, 26 May 2020
Huw looking happy and healthy after some changes to his diet
Most parents of autistic children are concerned about the food they will or won’t eat. Huw was never a picky eater, but he was manic for most of the day and woke at least three times every night. In my recent article for the National Autistic Society magazine, I suggested removing most additives from your child’s diet to reduce…
Why This Book is Important
Friday, 15 May 2020
Limited Edition High Quality Giclee print on 300gsm A3 Textured Paper. Title: 'Sensory Overload' Maximum print run: 30 Each print signed and numbered, available for £60 including e book and paperback as well as shipping. See RewardsSection. Additional notes: The image itself is less than A3 in size: there will be blank space especially above and below. This is not Huw's artwork. It was created…
Why Huw took Control of the Music
Monday, 27 April 2020
We didn't have headphones in our house and by the time we thought of them, Huw, at the age he is in the photo, had found his own way to listen to music. This brought other challenges and potential disaster but it was better than what went before in some ways...
Everyone likes different music in the house.
'Oh, not the Grateful Dead – pleease,' Mum says one day. 'I thought we had an…
Thursday, 16 April 2020
This is about sensory overload, but also about the vital role of carers and how, sometimes, it's a steep learning curve for those new to fairly severe autism. I must have written this poem long after the event because it begins in London where I eventually returned to work.
The smell of wet wool and the bus full
Of dark-clad Londoners,
Rain-soaked and cold,
A Poem for Everyone at this difficult time
Thursday, 9 April 2020
This was one of the first images I posted about life with Huw. It is also a poem about walking alone with my son and the mixture of emotions such walks can bring. Now that everyone is taking such walks every day, I thought I'd give you the text of the poem included in this image:
The Still Small Voice
You might need that – it said
But I’ve finished sneezing for today…
Huw Sorts Things
Friday, 6 March 2020
It is sunny outside but Huw has a lot of new things to do. Mum has been taking the paper out of video cases – Huw has helped to put the paper in a box. Then Mum puts the video cases and tapes in black bags. While Mum is in the back garden talking to her friend, Huw decides to do this with the DVDs as well as the videos that have been left over. He has no black bags or box, so he puts the paper…
Chocolate drama (extracts)
Tuesday, 4 February 2020
Mum and Huw are in the shop in the village.
'Go and find the tuna, Huw.'
Huw finds the tuna – no problem. Mum is tutting at the meat – sohh dear,' she says.
Huw runs round to where the chocolates are. He especially likes the ones in the big purple box – up there. Well, if they're up there he can climb up and get them! Huw can climb really high, now he goes to the climbing wall. Vivienne…
The Kindness of Others
Wednesday, 11 December 2019
As my daughter has mentioned more than once in her journalism, many people helped us cope with the challenges autism brought, including being unable to afford vital repairs. Here's an example of one such occasion, when temperatures outside were freezing:
Huw has a new friend. It's half as big as he is and has a big swinging face. Lucy says he is an Alien and isn't very hot.* There are flames…
Swimming in Fog
Wednesday, 13 November 2019
As I mentioned in an interview recently, we often chose to go with Huw's autism rather than try to repress him. Here is one example, which I wrote about in a poem, as well as in this extract from the book:
'Let's go to the beach,' says Lucy.
'Good idea,' says Mum. 'It'll be good to get out of this damp house. We can take a picnic.'
They go in the car. Huw loves the car. It is warm…
Sleeplessness, drastic mood swings, headaches - a possible cause
Friday, 13 September 2019
For most of six years, my son and I woke three times a night. Melatonin was the only way of getting four hours sleep at any one time. Then came a discovery:
'I don't know what came over me,' says Mum. 'Everything seemed so black – like being down a dark well. Oh - '
She puts her hand to her head.
'I must sit down, I feel all dizzy.'
'Again?' says Lucy. 'You've been dizzy…
Laughing at the Flood
Monday, 26 August 2019
Huw's love of water knew no bounds.....
What was that? A very loud CRASH!! Now, there is a waterfall in the house. Huw can hear it rushing and rushing. Oh, it's stopped. Huw can hear Dad. Now he shouts,
'Oh, MY GOD!'
Mum, Dad and Lucy all say that a lot. Huw stays in his room. He can't hear the waterfall any more. Then he hears Lucy scream. Now she is laughing, like when…
How it Felt at the Time
Saturday, 27 July 2019
I don’t often give in-depth interpretations of my paintings (which are really mixed media works), but I’ve recently been looking at this one and thinking ‘Yes, this is a true picture of how it felt at the time’.
The two figures to the left – who look like a king and queen – are puppets and made of wood. They are from an old Stella Artois beermat I found in a framed montage in a junk…
Going Gluten Free transformed Huw's life
Thursday, 27 June 2019
'I wondered if he would like a bit of cake,' says Rosy. 'I made one gluten free with the marge you listed as OK.'
'How lovely of you,' says Mum. 'Huw – Rosy has made you a cake.'
Huw likes cake. Huw loves cake. He goes into the kitchen.
'It's alright you can stay in the sitting room and I'll bring you the cake,' says Rosy.
Huw is opening all the cupboards in the kitchen. Huw finds some…
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…
Wednesday, 6 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…