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When Jon and Nicki Edwards took their
eight-year old son Tom to see a stage version of BBC comedy
series 'Allo 'Allo! at the Pier Theatre in Bournemouth in
1996, something miraculous happened. |
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Tom was totally captivated by the performance
of actress Vicki Michelle, reprising her role as Yvette
Carte-Blanche. And then, during the interval, he was able to
relay the entire plotline to his parents. 'I understand that
lady,' he told his mother. |
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Tom's parents were astonished and delighted.
For it was the very first time not only that he had related to
another person, but also followed a storyline and was able to
recount it. |
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Vicki Michelle has become a 'second mum' to Tom
Edwards after helping him for the past 14 years with his
Asperger's syndrome |
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Tom has Asperger's syndrome (AS). A form of
autism, it is a lifelong disability that affects how a person
makes sense of the world, processes information and relates to
other people. Until he saw Vicki, Tom had been locked in his
own world, unable to communicate properly. |
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That evening was to mark the beginning of a
lifelong friendship between Vicki, 54 - who has just
received an MBE for services to charity - and the Edwards
family. |
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©David Poole |
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Almost 14 years on, Vicki has become a 'second
mum' to Tom, who is now a strapping lad of 21 and at
university, confounding early expectations. |
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Nicki believes it's all down to Vicki's input.
Without it, she is certain Tom's life would have turned out
very differently. |
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Nicki, 51, says that as a child, Tom had
several significant problems and was very disruptive in
school. 'He had heightened smell and taste and he exhibited
ritualistic behaviour, such as constantly watching the same TV
repeats. He hated any change to his routine and became
extremely stressed by it, and couldn't cope when things
weren't perfect. |
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'He also had hyperacusis, a hearing disorder
linked to autism, meaning he was hypersensitive to sound and
couldn't differentiate between background and foreground noise
or process aural and visual signals at the same time.
Everything came to him like watching a badly dubbed film.
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'In addition, he had all the communication
problems that characterise Asperger's - the inability to
recognise body language, humour or irony. This meant he had
lots of problems socialising and was the victim of quite
severe bullying at school. |
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'Tom struggled to cope. Sometimes we'd find him
sitting under the desk with his hands over his ears, rocking
backwards and forwards. |
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©Jon Edwards |
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We were told he'd have to go to a special
school and that he'd never be able to do the things most
children take for granted, like riding a bike. We were told he
would never amount to anything. I'm ashamed to say I used to
believe it.' |
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Tom was defined as a special needs child,
finally being diagnosed with Asperger's aged seven, after four
years of tests. For the Edwards's, it was just an unhelpful
label. |
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They had absolutely no idea how to help Tom at
home or cope with his problems. They were at the end of their
tether. |
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Then came the fateful theatre visit on holiday
in Bournemouth. After the show, the Edwards family took Tom to
see Vicki in a pantomime - with the same incredible results.
A stranger at the theatre suggested Nicki write to Vicki,
telling her about Tom's reaction to her. |
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Nicki did so, expecting, at most, a signed
photo. But the very next morning, Vicki phoned, asking to meet
Tom and the family, who live near Bedford. |
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Vicki recalls: 'I remember receiving the letter
and reading it over and over. I thought, "Shall I just send
the picture or actually do something?" I decided, "Why not
give up a couple of hours of my time to help?" I'm a people
person. I like helping people. It wasn't a big deal.'
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When Vicki met Tom and realised the extent of
her impact on him, she decided to offer her support by
becoming involved in his life, calling him weekly and meeting
every month with his family, to take him bowling or to the
park or the cinema. |
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Later, she began inviting the Edwards family to
her home in Essex, or to wherever she was performing. Vicki's
daughter Louise, 20, also spent a lot of time with Tom. 'I
felt as if I could make a difference, so I should,' Vicki
says. |
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©Jon Edwards |
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Child development experts warned the Edwards
family not to rely on the actress, warning that she might get
bored and walk away at any time, letting Tom down.
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Vicki told Tom's mum: 'He'll have to lose those
he loves one day. Better it be me first and not you. But I
give you my word I will not walk away.' She never did.
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As Vicki came to understand more about Tom's
condition, she worked with Nicki to devise ways to help him,
using her acting training. For example, by slowing down or
speeding up her voice, she taught Tom to acclimatise to the
pitch and tone of different voices. |
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She acted out stories in different accents,
teaching him about humour. Sometimes, she started a sentence
verbally and finished it in mime, teaching him about body
language and its role in communication. |
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She also helped to build his confidence. Tom
was terrified of using the phone until Vicki started to ring
him regularly. He often used to have tantrums in public
places. |
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When he did this in a bowling alley once, while
out with Vicki, she reacted by pretending to have a tantrum
herself to show him how this looked and sounded. He never did
it again. |
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Vicki would often ring up and suggest an outing
at short notice,' says Nicki. 'At first this did cause mayhem
but as he grew to trust her and understand how busy she was,
he realised the prize of seeing her was greater than the fear
of something different. It helped him to cope with sudden
change, doing new things and going to new places.
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©David Poole |
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At the same time he learned to accept that if
Vicki suddenly had to go somewhere else at short notice, it
wasn't always in her control and he had to accept it. He
couldn't always get his own way and so the temper tantrums
diminished.' |
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Nicki admits at one stage she did feel jealous
of Tom's relationship with Vicki. 'But I soon realised Vicki
had actually given us our son - not taken him away. She
supported us as a whole family and taught us to look for the
positive in Tom, not the negative like everyone else had done.
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'She was all about what he could do, not what
he couldn't do. But the biggest thing she did for him was to
be there, not so that he was totally dependent on her but with
just the right balance to give him something to aim for and
look forward to.' |
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Vicki is modest about her contribution to Tom's
life, claiming she did very little. 'People didn't believe he
was meeting me,' she laughs. 'Once, Tom was asked what he did
during his holidays. |
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When he said "I went on holiday with Vicki
Michelle" he was given a detention for lying. The attitude
was, "Why on earth would someone who is on TV be interested in
you?" But why not? I'm no different to anyone else.'
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So why did Vicki have such an impact on Tom?
According to his consultant, retired paediatrician Dr Meher
Pocha, it's because of her acting skills, the sound of her
voice, the speed of her delivery and her natural use of body
language. |
'One of the major problems people with
Asperger's have is reading others' feelings,' says Dr Pocha.
'As an actor, Vicki Michelle can project and exaggerate her
feelings in a much clearer way than most people do.
'In combination with this, the particular pitch and tone of
her voice - which we had analysed - clicks with Tom. The
way his brain processes sounds and information can make other
voices difficult for him to understand. Hers is perfect for
him. And of course we can't underestimate the fact that
someone well-known took an interest in Tom. It definitely
boosted his confidence, which helped with his social anxiety
problems.'
Today, meeting Tom, you'd be hard-pressed to tell he has
Asperger's. He is friendly, articulate and clearly
intelligent. It's difficult to believe he was once so
isolated, and that at school he was predicted to fail and told
he would never play team sports or master a musical
instrument. |
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In fact, he left school with ten GCSEs, three
A-levels and an AS level and is now studying for a degree in
sound design technology at the University of Hertfordshire.
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He has a part-time job in a shop, plays the
keyboard and guitar, passed music exams up to Grade 5, and was
in the school football team. Tom can ride a bike and has
passed his driving test. 'Tom's brilliant now,' says Vicki,
and she is moved by the Edwards family's gratitude and
affection for her. |
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'I see being part of his life as something that
was meant to happen - call it fate or destiny or whatever.
As an actress, I'm lucky I'm in a position that people take
notice of me. It's important to give something back.' |
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Dr Pocha was so impressed with Tom's progress
she suggested making a DVD to help other children, their
families and carers. Once again, Vicki agreed to lend her time
and acting skills. |
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©David Poole |
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Two years in the making, the DVD is now
available to buy. It is aimed at young people with Asperger's
aged 13 to 18 and draws on Tom's personal experiences, using
actors (including Vicki, who is also the narrator, and her
daughter Louise) to depict various scenarios. |
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The issues covered include misunderstanding
body language, making friends, making sense of mixed messages
and sarcasm. The DVD offers strategies for coping and
communicating better, with exercises viewers can try at home.
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It was made by Vicki with The Friends of the
Child Development Centre, Kempston, The Bedford Charity and
The Hutchinson Family Charitable Trust, and endorsed by
leading Asperger's expert Professor Tony Attwood and the Open
University. |
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Tom wrote the music. Further DVDs addressing
other issues pertinent to people with Asperger's, such as
travel, are in the pipeline. |
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Nicki stresses that though Vicki's support has
been invaluable, she did not cure Tom. 'There was no miracle.
He still has Asperger's and still faces problems. The other
day he went to London. The trains didn't run as planned. He
had no idea how to cope and phoned me in a complete panic.
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'But what Vicki's done for Tom is amazing. She
took time out to help someone she didn't know and kept on
giving for 14 years. She's still giving now, always there at
the end of the phone if he needs her.' |
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Tom says: 'Vicki is more than a friend. She's
my second mum. She really built up my confidence and showed me
I could do anything. I hope the DVD will inspire others. Like
Vicki showed me, you never know what you can do until you try.
Everyone needs a Vicki.' |
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