I'm so proud of my boys: Mother talks of her life bringing up two sons with autism
02:06 GMT, 19 March 2012
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.
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
Giving them freedom: George (left) and Sam (right) are finding ways to channels their interests and hobbies
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.
Immense challenge: Sam and George's condition affects how they relate to others and the world around them
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.
Unpredictable: To highlight the difficulties in looking after someone with autism, Charlotte tells of the time she found George (left) screaming uncontrollably at a pita bread because, despite previously liking them, it just happened to horrify him that day
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
'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 ‘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.
Must be strong: Bringing George and Sam up requires my health and resilience… and a sense of humour
The bridges I’m facing now are what my two sons will do now they’re too old for full-time education.
We’ve been well served by the state so far — better than many. Both of my sons have benefited from the special-needs schools they have attended near our home in East Sussex. But now they’re young adults, what does the future hold
George is soon to leave college. Sam has already done so. Both have followed courses specific to their individual needs, combining physical activities with social skill learning exercises.
Sam is now following a home-based programme along the same lines with a personal assistant.This is going well, but it depends too heavily on two people — the excellent assistant and me. The safety net of college has gone.
The charity Ambitious About Autism is running a campaign called ‘Finished At School’ to highlight this problem and to extend educational provision for young autistic adults up to age 25, and this I wholeheartedly support.
Updating the George And Sam book made me reflect on the years of adolescence which once had loomed darkly on the horizon.
In need of constant care: One of Sam's most tiresome preoccupations are ripping up clothing and hurling toys out of his window
Back then my worries were profound: how would I control the boys when they were bigger and stronger than me
And, like all parents, I worried as puberty hit. But my worries were more complex: what form would sexual awareness take in boys with profound social impairments like Sam and George
But, most importantly, I worried if could I keep us all — especially Jake — safe. That was the bottom line.
Despite their shared diagnosis, the two brothers couldn’t be more different. Right from when they were tiny, George has always been the ‘easy’ one, usually gentle and biddable. For him, puberty was a highly anxious time: he was terrified of growing and was in denial about the physical changes that were taking place.
Making progress: George is more sociable than he used to be, as long as it's about breeds of dog or David Bowie
As his voice broke he would speak in a strangulated falsetto, attempting to hang on to the voice he’d always had.
He refused to acknowledge photographs of his younger self because they were proof of the dreaded process of change. ‘That’s Sam,’ he would claim firmly, turning the picture upside down.
Slowly he came to accept the inevitable, and at his excellent special-needs sixth form college he even came to enjoy being a teenager.
The grand finale was the leavers’ prom, held at a local hotel, where George — dressed smartly in suit and tie in place of the decaying tracksuit he’d clung on to for years — danced with his ‘girlfriend’, and sang Stand /03/19/article-2116948-123B379C000005DC-653_634x445.jpg” width=”634″ height=”445″ alt=”Team work: Charlotte was worried about her children's adolescent phase, but they got through together” class=”blkBorder” />
Team work: Charlotte was worried about her children's adolescent phase, but they got through together
The last time I tried it I learned my lesson. When Sam was 15, he’d been ticked off and was in a towering rage, smashing crockery and lashing out.
I bundled him out in to the garden and bolted the door behind him, ordering him to ‘stay there until you’re sensible’.
My weedy maternal injunction was ignored. Sam smashed through the window, leaving a fist-shaped hole. He drew back the bolt and rushed back in, roaring, and knocked me down.
It sounds worse on paper than it was in reality. In all honesty, I’ve never been afraid of Sam.
I feel sure of two things: that I can always outwit him, and that he is incapable of a sustained attack.
One bite, one thump, one kick: they’re not pleasant, but unlikely to do real harm. Simon and I have sustained bruises and puncture marks, but no one has ever had to have medical treatment. (A childhood spent scrapping with my two — non-autistic — brothers stood me in good stead.)
'There is one thing I am sure of — that George and Sam will need constant care and support for the rest of their lives'
As for Jake, he always obeyed my order to go to his room or to our neighbours when things got rough; he was never hurt. Nowadays he’s strong and alert enough to cope, should he need to and we haven’t had a real meltdown from Sam for quite a while.
Life with Sam still presents daily challenges. I’m so used to it that I hardly notice, but visitors can sometimes be taken aback.
We eat from plastic plates, because Sam breaks crockery. I lock up all foodstuffs, cleaning materials, medicines and toiletries otherwise they would be flushed down the sink or eaten.
Yoghurt pots and rubber balls are often seen bobbing in the loo the boys use — we keep the other bathroom locked from the outside, so that guests don’t have to confront this hazard. Sam has been known to lock people into this bathroom. Guests are always advised to keep their mobile with them at all times.
Sam’s most tiresome current preoccupations are ripping up his clothing (we’re thankful for Primark), throwing open doors in icy weather, and hurling toys, books and bedding out of his bedroom window. There is one thing I am sure of — that George and Sam will need constant care and support for the rest of their lives.
Jake’s a fairly typical teenager, enjoying sport, friendships, and his growing independence, choosing his GCSE subjects and thinking about his future. It’s fascinating and rewarding to watch him taking steady steps towards the full, enriched, productive adult life that awaits him, barring accidents.
I’m determined that his older brothers’ adult lives should be as happy and fulfilling as possible, though the paths that will lead them there are as yet untrodden.
The process has begun. George is far more sociable and communicative than he used to be — you can even have a conversation with him, as long as you want to talk about breeds of dog or David Bowie.
And Sam is finding better outlets for his immense energy through art, music, cycling and long walks. To live and work with George and Sam, you need your health and strength, as well as your sense of humour.
The two former are finite commodities, so it’s important that there are always other people to help out.
My target, as my sons enter adulthood, is to make myself dispensable. Some of my fears about adolescence were justified, some were not — but we came through it together. We are a family, and I’m proud of that.
George And Sam by Charlotte Moore, including the original Mind The Gap columns and a new chapter, is published by Penguin.