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Archive for March 19th, 2012

Proud of her family: Charlotte Moore at home with her autistic sons, George (left) and Sam (right). Her youngest boy, Jake (second right) does not have the condition


By CHARLOTTE MOORE

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The call from the kitchen was the high-pitched screech used for real emergencies.


George, the eldest of my three sons, was begging for someone to come quickly to his aid. Although he is a 5ft 10in grown man of 22, he sounded terrified.


Was his younger brother attacking him again? It wouldn’t have surprised me — it happens often enough.


Although two years younger than George, Sam was by no means beyond delivering a good thump to his brother when irritated. And George can be very irritating.


In the sanctity of the next room where my partner Simon, youngest son Jake and I were eating lunch, we all exchanged looks. ‘I’ll go,’ said Jake, putting down his plate.


Simon and I felt a pang of pride, grateful that Jake, at 14, has the confidence to tackle such an incident and the empathy to allow his poor old mother a chance to get on with her lunch without interruption for once.


Moments later, all was quiet and Jake returned from the kitchen.

 

Was it Sam? No, Jake reported. Sam was calmly sitting on top of the Aga, decorating his stomach with a felt pen, oblivious to his brother’s screams for help. It was a pitta bread that was causing the distress.


I’d set out a lunch of cold meat, salad and pitta for them and George was hollering as if a live tarantula had crawled across his plate — screaming and demanding that the ‘profitta’, as he called it, be taken away.


George has enjoyed pitta bread in the past, but for some inexplicable reason that day it horrified him. Just telling him that he didn’t need to eat the ‘profitta’ wasn’t enough. The hysteria didn’t subside until the offending item had been removed to the safety of the bird table.


Sam and George have autism, a life-long disability that affects how they relate to others and the world around them, and meal times over the years have seen some colourful scenes.


And the real reason why we, the three ‘non autists’ in the house, choose to eat our lunch in another room?


It’s not the tantrums, the shouting and outbrusts. It’s not even the interrupted meals.


It’s because George likes to sing along to a CD of Christmas carols while he eats, and while Sam puts up with it, there’s only so much O Little Town Of Bethlehem we can take in early spring. We retreat next door to eat and talk in peace.


If there’s one thing raising two autistic boys has taught me, it’s that a sense of humour is essential.

 

Ten years ago, I wrote a newspaper column called Mind The Gap, which chronicled the highs and lows of life with autistic children.


From the columns grew a book, George And Sam. When the book was first published, the older two were on the brink of adolescence, while Jake was barely out of infancy.


It’s just been reissued, including the Mind The Gap columns and a new, updating chapter. How have we all fared in the intervening years?


The ‘profitta’ incident illustrates some progress. The fact that I can now leave the older two alone together is good, even though I still have my ear cocked for problems.


The fact I can set reasonably healthy food in front of them knowing that at least some of it will get eaten is miraculous, after years of George’s quasi-anorexia and Sam’s difficulties with swallowing — he couldn’t eat without gagging and spitting some out until he was in his late teens.


That George can now use language to express his needs is very important, even though it still doesn’t occur to him to seek out the person he wants and speak directly to them. And the fact that Jake can move easily between the autistic and the ‘normal’ worlds safely, and without my protection, is a tremendous help.


Sam and George were both diagnosed when they were four years old. I don’t remember what I was told to expect at the time but, whatever it was, it would have been inaccurate. 


This is because with autism you can only expect the unexpected. The daily demands have always been so constant that I’ve rarely had time to worry about the bigger picture — I’m too busy dealing with the here-and-now. ‘We’ll cross that bridge when we come to it’ has been my most coherent coping strategy.

 

Read in Full:

http://www.dailymail.co.uk/femail/article-2116948/Autism-One-mother-talks-life-bringing-disabled-sons.html




Dear friends,


On March 6th, 2011 George Hodgins, a 22-year old autistic man living in Sunnyvale, California, was murdered by his mother. In the aftermath of his killing, I and other members of the local disability community were concerned by the fact that the media covering his death focused mainly on expressing sympathy for his killer. Because he was disabled, George had been written out of the story of his own murder.


This past Friday, I helped organize a vigil for George and other disabled people killed by their family members. One of the names we read was Tracy Latimer’s a disabled teenager killed by her father in 1993. Little did we know that as we spoke Tracy’s name, her father was speaking on a television panel for the Canadian Global News, arguing for legalizing the killing of disabled people – in the name of “mercy.” Our vigil received sympathetic coverage in the press, but so did Robert Latimer’s call for legalizing the murder of disabled children.


It’s obvious that many in our society still regard the murder of disabled people as unimportant, or even desirable. But I’ve also learned that disabled activists can also have an effective on public perception, if we can find a way to get our voices heard.


On behalf of the Autistic Self Advocacy Network, I am asking you join us in taking action. On March 30th, help us organize a nation-wide day of mourning for disabled people killed by family members and caregivers. Our goal is to hold vigils in cities across America to memorialize murder victims. Through your help, we hope to amplify our message: that disabled people deserve to live fulfilling lives free of violence.


We’re calling for volunteers to organize vigils in their local communities on or around March 30th. You may never have organized this kind of event before, but please know that you’ll have support – our first vigil was a success, and we can help you as you work to organize yours. If you want to help us take a stand against the violence facing our community, please write to me at zgross@autisticadvocacy.org.


Send a message to society that the disability community has no place for the kind of “mercy” offered by Robert Latimer and others who view us as having lives not worth living. The time has come for us to fight back. On March 30th, help us make it happen.


In solidarity,


Zoe Gross
Autistic Self Advocacy Network