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Bereavement and Autism.

I’ve had to step away from my writing projects over a few months as my dad died and I have responsibility now for caring for my elderly mum and aunt as well as my son, who was the inspiration behind Dylan’s story.

Bereavement and autism are an interesting combination. My son reminds me that dying is natural, it is a part of life. Also, he has no anxiety or squeamishness thinking about death, and this is a relief, in many ways. I don’t want him to feel the pain that I’m experiencing. I’m curious though to know if he genuinely is ok.

I feel that I have to hide my grief to an extent, as he is not comfortable with strong emotions and although I think he misses my dad he does not cry or talk about him. He did not attend his funeral, but he did make a piece of music with his music mentor that was played there, it echoed the type of music my dad enjoyed.

He was close to his grand dad. Both could talk endlessly, and they had an easy comfort with each other. My dad shared his experiences of struggle and mental health challenge, helping my son open up as he grew older, and feel validated and understood.

Perhaps this is what we hold on to. I talk about my dad as much as I can with him and give him space to share. We’ve looked at lots of pictures together as I have been clearing my dad’s house and keeping the memories close. We kept some of my dad’s ashes. His final resting place is a long way away from where we live. Jack has chosen to bury them under an apple tree that we are about to choose and plant in the garden.

Getting breaks as a carer

I was excited to open the post today and find my article about caring breaks in Your Autism magazine, published by the National Autistic Society. I’ve tried to highlight in the article the lack of care options and funding for those with autistic children and young people and other additional needs. Carers often feel forgotten, isolated and lonely. Many report that their own mental health is affected as well as their finances, and work opportunities are more limited.

Our son is now 19, but this doesn’t mean that getting breaks has become any easier, in fact it is now harder. Jack is autistic and has two anxiety disorders, as well as other comorbidities (scary word, it just means two or more conditions or diseases at a time). Whereas Jack was able to travel extensively with support when he was younger, since his early teens anxiety has made this increasingly challenging, and now he is unable to travel more than a few minutes from home, walking or in our car. Unfortunately  his issues, and our lack of family who can support, mean that not only can he not go on holiday but  we can’t get away for breaks without him either, for longer than a few hours.

Finding the right mental health support for Jack is critical to help him overcome his anxiety, and finally we have found a therapist who can support him, (we are still waiting on funding). We have found support for a few hours at a time, and are hoping to build this up as Jack feels better, and gets used to us being away for longer periods. In the meantime we have had to be creative, and the article gives a few ideas as to how others might build in some respite time in similar ways, and achieve small breaks at least. There are also some initiatives which, providing more support, and some with tailor made properties, allow families to have breaks together, such as spectrum-holidays.com and kolokodirect.com

 

Telling It From The Inside

Dylan’s Story, and those to come in the Someone Like Me Series, are stories told from the inside. Dylan is based on our son, who was seven when I wrote the book. His experiences, and in many cases actual words, are used in the story, as well as some of his contemporaries and family members.

As our son was growing up, and we were looking for resources to explain his diagnosis to him, we found that books were largely written from the outside, from the perspective of what the author imagined autism to be. They were often rather plain and cheaply produced, and very “factual.”

As a parent I latched on eagerly to the incredible “The Reason I Jump,” where Naoki Higashida tells us about his experience of the world as a nonverbal autistic from Japan. Also, the funny and heartwarming “Freaks, Geeks and Asperger Syndrome,” by the teenager Luke Jackson. These books resonated with me and helped me to understand things from my son’s perspective.

However, these were not particularly helpful for our son. He needed to hear from a child who was going through the same experiences as him at 7ish – struggling to understand his diagnosis, having meltdowns, sensory challenges, and also wanting to make friends and friends like him, who would help him make sense of his world. And he deserved a book that was every bit as colourful, glossy and dynamic as all the other books aimed at neurotypical children out there. I wanted it to be fun, truthful, honest, full of amazing discoveries and other autistic people to inspire him and friends to identify with. A book written from the inside.

I hope that other parents and children, as well as professionals, will find it helpful, and have as much fun telling their own stories.

Green Words

​This summer I was delighted to have some work included in Green Words, an anthology written by local authors about all things green, nestling in the natural beauty of West Dorset.
I was feeling distinctly rusty, having been able to write little fiction during Covid, and up against the clock. But managed to write three varied pieces and be part of the launch night. This has given me the push I needed to get on with my YA novel and redouble my efforts towards publication of my Someone Like Me books.
Green Words was produced to raise funds for the Dorset Wildlife Trust and copies of the book are available at the wonderful Kingcombe Meadows Nature Reserve, near Dorchester.
www.dorsetwildlifetrust.org.uk

What’s been going on?

Looking at my website I feel desperately guilty. Why haven’t I been updating and blogging?

Well, in 2020 something more pressing cropped up, as it did for all of us. Covid meant that I suspended my novel writing for some considerable time, and had to pause progress on the Someone Like Me series. Like many of you, our family was thrown into home schooling, and for my son this was Year 10, his GCSE’s to be sat. I wrote an article about home schooling for Your Autism magazine, because it really was a roller coaster of  a time, both deeply rewarding, and hugely frustrating in parts.
Because I taught my son English I was thrown into conflict poetry and The Merchant of Venice. It was an amazing opportunity to learn and grow alongside my son. My favourite poem was My Last Duchess, by Robert Browning, which Maggie O’Farrell has just used as the background for her novel The Marriage Portrait. It’s an intriguing story.
So for a time my writing was limited to producing teaching materials, adapted to my son’s learning needs. This made me feel passionate about the need for greater understanding of SEN in schools, and realistic accomodations and adaptations so that all children can fulfil their potential and express themselves completely.

The Silence Was The Strangest Thing

I took part in this month’s spoken word competition in Bridport called the Bridport Story Slam. Our voices this time where viewed and judged on screen. I  was pleased to be awarded a second place in a competition heavily influenced by Lockdown and Covid 19. This is my entry, based on the strangeness of the silence that cocoons us. It became a piece where I was also able to bring attention to the increased number of domestic violence incidents that are taking place, when partners  are not safe in their own homes.The silence was the strangest thing.

“Those bloody birds, can’t you hear them? Listen!” He thrust his mobile phone in her face.
“You recorded them?” she asked, rubbing her arm.
“They’re driving me mad!”
He was.
Apart from the radio at five, her own inner monologue, and the “bloody” birds, it was silent. No cars, planes and the only footfall the occasional visit of the postman to their box. Their neighbours had packed up and headed to the coast weeks ago. It was just the two of them now. And no pub to steer him to in the evenings. No work. Instead, he watched her. Even when she was in the shower.

Out in the garden that evening, the blackbird on the seedball took flight alarmed at a low shriek, followed by a crashing thud which echoed through the wood. The silence resumed. No-one would be coming. She calmly wiped the knife blade on the grass.

Sunny days

In my first readers I remember it being always sunny, with the occasional shower involving puddles for Peter and Jane or Janet and John. But children love many different types of weather: strong winds;frost;thunderstorms;rain. And life is lived no less in these moments.

When I started writing my dystopian YA novel Catalunya, I realised that in this world climate change had made the planet so much hotter that the sun had become an enemy that needed constant protection from, and that there were few variants in the weather, other than electrical storms and winds. Life would be lived in a very different way. I had made the environment hostile, dangerous and intolerant of my characters. The writing of Catalunya became stronger, less nuanced. Everything was urgent, exposed, more focused. Lowry’s mission is to find the family she was separated from during an asteroid strike, whilst at the same time she is being watched and downloaded for information by a government, El Centro, who believe that she holds The Key, essential for survival.

In Lowry’s world, ice cream is a luxury few have tasted. Beaches are cordoned off and snow is a distant memory. Let’s hope it doesn’t become our memory too.

Anger

Anger is not a cuddly emotion that normally lends itself to children’s books. But anger is something that our children with additional needs are usually all too familiar with. I believe it is an emotion that needs dealing with honestly and realistically.

Someone Like Me. Dylan’s Story, opens with him feeling angry and confused. He thinks that he is stupid and different from everyone else. This is far from uncommon with children with Asperger’s syndrome, who can feel isolated and unhappy, especially in challenging environments like school and in team sports.

Understanding his diagnosis, and finally making a friend who also has ASC, is Dylan’s journey towards acceptance of who he is, and the potential that he has to be.

Watching my ideas come to life

When Liz, my amazing illustrator and publisher of Fuzzypig Books sent me her first drawing of Dylan, I didn’t much like him!  But as we worked through the text together, and more and more illustrations fell into my in box, I began to love him.

I had been asked many times “so, how will Dylan look?” Or, “what sort of illustrations do you want?” To which I could only reply, “I’ll know it when I’ve seen it!” I toyed with various ideas in my mind about how best to depict the down to earth, realistic and funny story. I knew which illustrators and styles I admired, but what was best for Dylan?

To me, Dylan’s picture was a little bland and nondescript, or even a little frightening with the emotions he was portraying. But I reminded myself that this was our brief. That Dylan needs to be a character that children with ASD can identify with. So he can’t have a very specific look or clothing, as a child on the spectrum might be distracted by this. Also, his emotions need to be seen clearly, as anything ambiguous would be hard to interpret.

As I saw Dylan in the different parts of the story, at school, at home in the bath, and having a bed time story with his cat in beautifully drawn scenes, I became reassured, and excited to see him popping up every time.

It’s a strange experience having your words set to visual, and it’s only been possible because Liz also has a strong interest in children with additional needs and understanding of them. It took me eight years to find her, but she has bought Dylan to life!

Illustrations

​I’ve been thinking about the sort of illustrations that would work for the Someone Like Me books for quite some time. I feel that the pictures in a children’s book say everything about it, and as much as the title will draw the child or their parent in.

I wanted to create a series of books for children with additional needs that  were as beautiful and colourful as any of the others in the book shop. Our children are different not less, but often books written for special needs kids end up  with poor quality paper, front cover design and type, and with black and white line drawn illustrations.

I looked at some of our favourite books: Mr Big, by Ed Vere, the Charlie and Lola books by Lauren Child, the Meg and Mog books by Helen Nicoll and Jan Pienkowski and Elephant and Piggie by Mo Willems. I love the vibrancy  of these books and the very distinctive characters.

The first book in the Someone Like Me series is about Sam and his reaction to his ASD diagnosis, and I had to ask whether kids with ASD relate to books in the same way as I do? My son seems to. However, as I spoke to professionals about children on the spectrum they reported that it might be better to reduce colour, which could be overly demanding, and have characters that are not given very distinctive features. As for example, giving Sam a yellow scarf might make kids on the spectrum think that they are not like Sam, because they do not have a yellow scarf, or even like scarves!

So, there is a big challenge here in making books relatable, fun and user friendly. Please do share any feedback and ideas that you have.