Samuel's World

Tourettes website launched by local mum in Horsham

Support site launched

A MOTHER whose son has Tourette Syndrome, attention deficit hyperactivity disorder (ADHD), Asperger Syndrome and obsessive behaviour disorder, is running a support website for other families at www.samuelsworld.co.uk.

Lynette Coates, 36, of St Leonards Road in Horsham, hopes the site will provide practical advice as well as moral support.
Lynette and husband Lester Coates, 45, have two children – Grace, eight, and Samuel, seven, who was diagnosed with the four disorders this year.

The website was set up by Lynette’s brother Clive Walker, a freelance web designer.
She told the County Times: “It’s really just a bit of a helpline for parents”.
“When you get the diagnosis for your child, you go through all sorts of emotions.”
Although they were given useful information leaflets, the couple felt it would have been helpful to have some one-to-one contact with people who knew just what they were experiencing.
“Tourette’s meant nothing to us, apart from Big Brother and good old Pete,” said Lynette.

“It’s a big impact on the whole family, because you have to adjust your lifestyle to suit everyone, not just Samuel.”
She added: “If we’ve gone through all of this, there must be hundreds of other people that have, and hundreds more that are going to.
“So if I can be any help, even just to have a cup of tea, just to have that link to somebody on the end of a phone.”

Lynette said the website, which Clive designed with a view to making it easy to update, will include reviews of a range of products and services aimed at families like theirs.
These could be anything from advice books to holiday destinations marketed for special needs families.
They also plan to list some of the items on which Samuel can focus his attention when he needs to calm down.

Lynette knew when Samuel was two-and-a-half years old that something wasn’t right.
He found nursery school a major challenge, and had difficulty socialising with other children.
Samuel seemed to do a little better in mainstream schooling, but he was always fidgeting and would throw the occasional tantrum.

In Year 2 he began to develop tics, repeatedly blinking, sniffing, snorting or clearing his throat.
Lynette says she voiced her concerns so often that she began to feel like a ‘paranoid fussy mother’, but Samuel was eventually diagnosed with ‘a social communication disorder upon the autistic spectrum’.
His tics began to get worse, some of them becoming so bad that they began to damage his muscles, causing a great deal of pain and upset.
Fortunately, medication can reduce the tics’ severity, although it cannot get rid of them completely.

Earlier this year a specialist at St George’s Hospital, London, told the family that Samuel has Tourette Syndrome, ADHD, Asperger Syndrome (a form of autism) and obsessional behaviour disorder.
Samuel has difficulty interacting with other children, and finds it hard to play games because he often cannot understand the rules.
Because of the ADHD, small problems and frustrations can push him into an uncontrollable fit of temper.
This can be a particular problem when Grace wants to play with him.
“But she bounces back,” said Lynette. “She loves him dearly.”
10 November 2006

Courtesy of West Sussex County Times

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