The Boy Who Loved

“YOU’VE RUINED MY LIFE, MUMMY!”

I didn’t expect to hear those words for at least another few years but my six year old autistic son said them to me the other day.

Why?

Because his most treasured friend in all the universe had lost her voice!

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The Boy with his special friend.

Her name is Hedwig and once upon a time she was Harry Potter’s faithful companion. Anybody who’s read the HP books or seen the films will know of Hedwig’s fate but in The Boy’s world, she is very much alive.

She arrived via Father Christmas last year and we thought he would explode with joy. It was THE best present in the entire world!

Autistic people have obsessions. The Boy’s started with numbers when he was three and he wowed his teachers at school by knowing his entire 12 times table at the age of four. His photographic memory means that he only has to see something once to remember it – most helpful when it comes to exams!

This obsession lasted two years and then owls took over after hearing The Owl Babies at school. He was especially taken with ‘Bill’ who always wants his mummy, like he does.

Then we watched Harry Potter and the Philosophers Stone and he saw the owls, in particular, Harry’s snowy owl – Hedwig.

And it was love at first sight.

It’s the intensity of an interest which makes it an obsession and owls help The Boy cope with the uncertainties of life. They are his constant companions and his bedroom is full of owl paraphernalia. At school they keep one especially for him to cuddle when he feels anxious and as a reward for effort he is allowed to take his special friend into school with him at the end of the week.

Last week was a good week for The Boy. Despite being poorly and missing a day, he was able to do some work in the classroom which is a huge thing for him to cope with. He chose to take Hedwig to school on Friday and went in full of smiles as he was so happy to be spending the day with his special friend.

However, joy turned into distress at home time when he came in crying his heart out.

“You HAVE to make Hedwig talk Mummy, she’s lost her voice!”

Hedwig’s ‘voice’ is a small button located in her wing that produces owl noises and by the sound of it, it had seen some serious action that day because it was barely audible. I knew that there was no way to change the battery as it’s sewn into the toy. Once it’s worn out, that’s it – although I didn’t realise this when I ordered it.

Struggling to find the right words to say to comfort him, I ended up saying entirely the wrong thing..

“I’ll try Sweetheart but I can’t promise you she’ll get her voice back”

He crumbled in front of me and with eyes full of tears he shouted:

“YOU’VE RUINED MY LIFE, MUMMY!”

And at that moment, I felt like I had.

He took her upstairs and wrapped her gently in his Batman blanket, then he tucked her into his bed as I had done with him the day before. For a child who is naturally heavy handed, he was surprisingly gentle with her.

OH e-mailed Warner Bros to ask if there was any way to rectify it and I contacted them via social media. As of yet, neither has responded.

Then something wonderful happened..

An online friend (a person I’ve never met) offered to give The Boy his Hedwig because he is also the parent of an autistic child and he understood my son’s distress. How wonderful is that? Such a beautiful thing to do. It’s too generous an offer for me to be able to accept because I know what they cost but I will never forget his kindness towards a little boy who he doesn’t even know.

I also got a message from one of The Boy’s sister’s who had obviously seen what was going on via social media and found a snowy owl on the internet which made noises and she’s posted it to him. As she says, it’s not Hedwig but a little boy can never have too many owls!

Then a little miracle happened..

Hedwig – after a night of rest and recuperation – got her voice back – ish.

Dear Reader, you and I both know that it will happen again because we know that these toys are not designed for longevity, especially when there is an obsessive autistic child pushing it’s button a zillion times a day. So we are getting a back up toy which will be swapped over when Hedwig’s voice goes for good. At the moment, it’s important to him so it’s important to us.

As I was writing this post I got to thinking about a doll that I had for my fifth birthday. ‘Drowsy’ had a cord which made her talk when you pulled it. She said things like “I’m sleepy” “Kiss me goodnight” and “I want a drink of water” and she giggled. How I loved that giggle and how I loved her. She was my constant companion throughout my childhood. Eventually, the cord snapped off but there was nothing Mum could do. There was no chance of her being swapped because she was uniquely mine, as in, I’d given her a haircut and Mum had covered her original polka dot play-suit with some old curtains. One day the stitching around her neck gave way and her head all but came off. I begged my mother to do something and fair play, Ma sewed her head back on. The stitches weren’t exactly pretty but by that time, neither was the rest of the doll.

To me she was more than a doll – she was my friend who listened to me when no one else would. A loyal friend like that could never end up in landfill which is why I still have her 41 years later and it’s my wish that she’ll go with me when I die as I would chuffing well haunt the bugger who puts her in the bin after I’m gone!

So I understand how much he loves this stuffed owl and thankfully we will be able to swap it without him understanding what we’ve done, unlike my Drowsy doll.

Will The Boy still have Hedwig when he’s my age?

Probably not but who knows..

Autistic children grow and their obsessions change, although some can be life-long.

All I know is how much she matters to him now. He loves her as he would a human being. As I type this I can hear him making his owl noises. When he is anxious he screeches like an owl. When he is happy, he hoots. He nibbles my hand like real owls do. In fact, I think he believes he is part owl and that is perfectly fine by me. Hoot Hoot!

Harry now carried a large cage that held a beautiful snowy owl, fast asleep with her head under her wing. Harry Potter and the Philosophers Stone ~ J K Rowling

Sons, Sand & Sauvignon
A Bit Of Everything

 

Changes

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Changes happen all the time but changes to routine have profound effects on the autistic mind.

For instance..

The Boy has been attending a disability centre every Saturday morning since October. This came about because me and OH were struggling to spend any quality time together. We usually managed half an hour of Jamie Oliver at night before one of us zonked out.

Our lives revolve around our son in a way that many people won’t understand because autism is all consuming. Parenting an autistic child is incredibly rewarding but even the good days can be stressful, especially when a child has as much energy as The Boy.

I think it’s important for parents to re-charge their batteries so I asked for help so we could re-charge ours. I also figured that it would be good for our son to spend time in an environment where he wouldn’t be judged for being different. It was as much for his benefit as ours so we were assessed and referred to the local centre for what is known as ‘small breaks’.

So we’d drop The Boy off at 9.15 on a Saturday morning and go into town.

Shopping is something we try and avoid with him because he has sensory processing disorder alongside the autism which makes it an unpleasant experience. He also struggles to do anything he’s not interested in and the result is a meltdown – often of epic proportions. He also HATES supermarkets with a passion unless it’s a quick in and out for his comic.

I’m not comfortable with them either but I have the years of coping skills that he has yet to develop.

The joy of internet shopping didn’t exist when Eldest Boy and Middle Boy were children so I had no choice but to go. However, I always went at quiet times of the day so the anxiety was kept to a minimum.

After years of struggling to take The Boy with me during school holidays, I realised that I could save myself the nervous breakdown by doing the shop online. Why in the name of Alan Titchmarsh didn’t I think of it before?

Prior to this, The Boy would scream and run off and pull boxes of panty liners off the shelves as he ran. I’d have to abandon my trolley (always the wonky one) and chase after him like a complete chop.

I say chase but it was more of a really fast walk…

Shopping for clothes is another nightmare because we have about 6.5 minutes to get the job done before The Boy totally loses it – like a few weeks ago when we took him to buy school uniform and the mission had to be abandoned after 5 minutes due to him belly crawling along the supermarket floor screeching. ‘I DON’T LIKE YOU ANYMORE!!!’.

People stared as if we were the shittest parents in the world.

Same. Old. Story.

It’s been nice for me and OH to spend time alone without worrying about our son. We’ve enjoyed wandering through the town linking arms like a couple of old gits. It’s made a big difference to morale and it’s all worked perfectly, until now.

So, we’ve had a letter to say that The Boy’s session is being move to a new building and it will be on a Sunday.

CHATEAUNEUF DU PAP!

As Del Boy would say..

My concerns are primarily about how The Boy will cope with this change to routine. I understand too well the need for routine and familiarity and this is a MAJOR change so my umbrella is up for when the poop hits the fan..

Due to cuts – he will have half an hour less time so due to this (and Sunday opening hours) it will no longer be viable for us to go to town.

I’m no fan of change either and since we received the letter I’ve been comforting eating Kit-Kats to the point that my arse requires it’s own postcode!

I’ve e-mailed the Short Breaks manager and inquired if a Saturday session is an option but at the end of the day, if this is our only option then we’ll just have to accept it and adapt to the situation.

Thing is, I need routine as much as my son does and this has been my routine since October. As always, I will deal with my anxiety and try and concentrate on keeping his to an absolute minimum. OH will need those broad shoulders of his to cope with our individual ways of dealing with change – The Boy with his meltdowns and me with my need to be alone in order to process the changes.

Change is inevitable – it’s part of life. I know this and I know that change can often be for the better but despite all this I struggle with it and always will.

When it comes to autism – most people are resistant to change. It’s a common issue because the world is a confusing place to them. It’s chaotic and uncomfortably so. Routine and familiarity brings order and structure which helps to reduce anxiety. When changes happen it causes distress – unexpected changes being the most difficult to deal with as there is no time for planning or preparation.

There are things we can do to help our son cope with the change. We can use social stories and countdown to the day so he knows exactly when the change will take place. These strategies will help to make the transition less distressing for him.

I would definitely have benefited from the strategies listed above as a child instead of living in constant fear of change but at least my struggles mean that I am able to identify my son’s triggers better than most and when he squeezes me and says. ‘I’m glad I chose you to be my mummy’, I know without a doubt that I would go through it all again.

Turn and face the strange ~ Changes – David Bowie

 Image Via Creative Commons

A Bit Of Everything

 

 

Autism, Creativity and Me

Myth – People with autism lack creativity

Some of the most creative people on the planet are known (or suspected) to have autism.

It’s a common myth that autistic people lack creativity. It is true that some have specific interests and struggle with abstract concepts but that’s all part of seeing the world in a different way. In every area of the arts you will find people who have autism.

This study was published last year.

For the study, researchers looked at responses from 312 people – 75 of whom had a diagnosis of autism.

Participants of the study took the Alternative Uses Test where they were asked to think about uses for an everyday item such as a paper clip or a brick. This test is used to measure divergent thinking –  a thought process or method used to generate creative ideas by exploring many possible solutions.

In line with previous research (which showed that people with autism score lower in these tests) it found that while they came up with fewer responses, the ones they did come up with were more unusual and creative compared to non-autistic people who commonly saw an alternative use for a brick as being a weapon or a door stop.

It highlights that autistic people are able to think ‘outside the box’ and come up with ideas that are incredibly creative.

Iris Grace

Iris Grace expresses herself through art. Her paintings have been sold to private art collectors here in the UK and all over the world.

What’s special about Iris?

Well, she is six years old and autistic.

http://irisgracepainting.com/

Iris’s life changed when she met Thula the cat in 2014. Animals often have the power to reach the autistic child in a way that no human can…It is truly a heart-warming story.

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The Boy

The Boy struggles with creativity art and crafts wise. He will only draw what interests him and 95% of his drawings are of stick-people whereas most of his peers’ drawings are more detailed and formed which is appropriate for his age group. Having said that, Katie from the hilarious http://hurrahforgin.com/ draws stick-people and she’s doing quite well from it, as did Lancashire lad L. S Lowry!

The Boy draws his obsessions and those obsessions started with numbers. He had a habit of drawing stick- people with their ages above their head which made me wish I’d knocked a few years off myself. Opportunity missed there, methinks!

His current obsessions is Ninjago and owls.

Being used to his stick drawings I was absolutely delighted when he produced this at Christmas..

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The Owl Babies

The Boy first became obsessed with owls two years ago when The Owl Babies was read out in his class at school. He fell in love with ‘Bill’ because he’s the smallest and cutest. The teachers soon realised that owls were the answer to keeping him calm or providing comfort when he went into meltdown so they provided him with one to keep on his desk. Fabulous, eh?

Such is his love for these creatures that he was able to produce this beautiful picture which we’ve now framed. I know what effort it must have taken for him to do it and I couldn’t be prouder.

Art and Me

I’m creative person – a visual thinker and once upon a time I loved to draw.

My first work of art was to scribble all over my bedroom wall which really impressed Dad who’d just painted it. OOPS!

I was a crayon sniffer at school (is that weird?) and was fascinated by the variety of shades – my favourite being crimson. I like that word, crimson. It was the same shade my face used to go when I had to read out loud in class. *twitch*

Few subjects held my attention at school but art was one of them. I didn’t get the technical jargon and I’ve never stood with a pencil at arms length but I just loved being able to create something. It made school bearable but as we morphed into teenagers (therefore, gobshites) the art teacher became inept at controlling the class and in those last few years even art couldn’t provide me with respite from the bullying.

My love of art was inspired by Eldest Brother who was (and still is) a talented artist who reached A level standard. I admired him a lot and wanted to be like him, so I started to draw..

My art teacher said my work was OK but stylized. Cow.

I didn’t do very well at school. There were too many distractions of the sensory kind and an inability to perform under exam situations meant that I left with nothing to show for it. However, my art exam was done in a more relaxed atmosphere and I was able to produce work that I was proud of which ended being displayed on the wall. It was of a girl and it was an expression of myself and I was proud of it mainly because I achieved sod all else.

I don’t know what happened to that painting but it was in the same style as this one that I did a few years later.

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Obviously I was heavily influenced by the 80’s Not sure when I painted this…

Technically, it’s crap but that’s not what art is about to me. Art is expression. It’s looking at a blank canvas and creating something. In art, I found something that I wasn’t completely toss at and I liked how it made me feel.

I haven’t done any drawing or painting at all for eleven years. The only painting I do these days is up a ladder with a roller ha ha

Art is a good way of misfits, such as myself, to express themselves and for those like Iris Grace, it’s way of unlocking a silent world.

Maybe The Boy will develop a love of art and maybe he wont and either way it’s OK because I know he will find a way to express himself in whatever way is right for him.

“Art enables us to find ourselves and lose ourselves at the same time.”Thomas Merton – No Man is an Island

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Mummy and Monkeys

 

Sons, Sand & Sauvignon

 

Dancing With Mr D

 

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It’s been a busy few weeks for Death.

Alongside the 151,600 unknowns who die on a daily basis, he’s been rounding up some major icons – Lemmy, David Bowie, Alan Rickman and his latest recruit, Glenn Frey.

Lemmy was 70. Bowie and Alan Rickman were both 69. Glenn was 67.

Death at this age doesn’t surprise me. Most developed countries accept the age of 65 to be elderly, though my mother would argue the toss on that one. She was NEVER an old aged pensioner!

To put things into perspective, Lemmy, David, Alan and Glenn were all OAP’s.

Most of my idols are a good twenty years older then me so that puts them in this age bracket which means that Mr D (Death) will have his eye socket on a few more before too long. It’s simply a matter of nature taking it’s course and a reminder that while fame can bring you fortune, it can’t bring you immortality in the physical sense.

There are exceptions to the rule though. Bruce Forsyth appears to be immortal. The Queen is 90 next birthday and certainly looks like she could carry on for another 90 (if only to piss Charles off) but your average rock star does well to make it to old age – such is the consequence of life in the fast lane.

Why The Grief?

Since Bowie and Alan Rickman died, the sincerity of grief shown by the public has been called into question by certain people like Camilla Long who writes for The Times..

“So many people “crying” or “in bits” over Bowie. F**K YOU. You are not ten – you are an adult. Man the F**K up and say something interesting.”

My favourite response came from Lucie Toblerone:

“Log off then, you dullard”

Camilla whinged that she’d been treated like Katie Hopkins on social media which doesn’t surprise me because it’s exactly the type of inflammatory crap that Hopkins comes out with and, like Hopkins, she deserves what she gets.

I would think there was something very wrong with humanity if Bowie had died and nobody expressed sadness or grief. I think at that point, annihilation would be in order, no?

Do we have to know a person in order to grieve?

I don’t think so.

It may not be the same grief that we’d feel for a loved one but it’s grief all the same and who are people to belittle it? What makes them think they can sit in judgement over others as if their world view is the one we should all live by?

Lemmy, Bowie, Alan and Glenn have gone but they will never be forgotten because they live on in their music and films.

David Bowie

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Bowie was so much more than a musician. He shocked the world with his persona, Ziggy Stardust. Dad, along with his generation, didn’t know what to make of him. Bowie broke all the rules and we wont ever see the likes of him again because it’s all been done now.

Bowie gave people a reason to keep going – music is that powerful. He helped so many ‘weirdo’s find a place in the world and for that alone, he’s worthy of the title ‘icon’.

Lemmy

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Lemmy was the epitome of rock and roll.

Listening to Motorhead (and heavy rock music in general) helped me get a grip on adolescence. Lemmy’s gritty voice and fast paced music filled me with a confidence I desperately needed – such was the effect his music had on me. We are from the same town in the Potteries. He was one of ours – a fellow Stokie. So, yes, I am sad he’s gone.

Alan Rickman

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I’ve shouted “BASTARD!!!” at the TV screen during Love Actually and fallen in love with his serious Severus face in Harry Potter. I cried proper snot-faced tears when his love for Lilly Potter was revealed. I didn’t know Alan but his acting touched me truly, madly and deeply. I will remember him, always.

Glen Frey

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Today we lost another rock and roll great in Mr Glenn Frey who ‘checked out’ at the age of 67.

See what I did there?

Frey was a founding member of The Eagles and I have so many memories connected to their music. I must have listened to Hotel California a thousand times and never tire of hearing that amazing guitar solo – arguably one of the best there is.

Take it Easy, Already Gone and Lying Eyes evoke memories of hot summer days ( before air-con) winding my cassette tape back in with a pencil. Cassette players in cars, imagine that..

Music has a physical effect on me. My mood changes with the tempo and I can lose myself in the imagery that the music conjours up. It’s pure escapism to me and the day it stops affecting me is the day I no longer want to be here because I won’t be me anymore.

I am genuinely sad that these men are no longer here. I do feel that a part of me is grieving. Is that wrong? I don’t think so.

A lot of stars who started out in the 60’s abused drink and drugs – especially in their heydays – so longevity is a big ask. That said, I thought Lemmy did exceptionally well to make it to 70 considering his history which included downing a bottle of Jack Daniels every day from the age of 30.

Point is, we don’t need a crystal ball to know that we will be losing a few more icons in the not too distant future..

Having read Terry Pratchett’s Discworld books, I can’t help but think upon Death as having a personality.  So I imagine him dancing in the streets with Bowie – headbanging with Lemmy – pretending to use the Avada Kedavra curse on Alan and tapping his phalanges along to Already Gone with Glenn before taking them to heaven.

Camilla Whatserface is wrong. You don’t have to know a person in order to grieve when they die.

In my darkest moments it was the voice of a stranger that got me through, not somebody I knew. Is that not deserving of emotion when that person dies?

It’s OK to grieve for someone you don’t know. It’s what makes us human.

Lemmy, David, Alan and Glen,

Thanks for the memories.

Rest in peace.

No one is actually dead until the ripples they cause in the world die away. Terry Pratchett  Reaper Man

A Bit Of Everything

Image Credit David Bowie by Avro

Image Credit – Lemmy by MarkMarek at the English Language Wikipedia

Image Credit – Alan Rickman by Marie -Lan Nguyen

Image credit – Glen Frey by Steve Alexander