Share the care and make a difference

PARENTS of autistic children have an exhausting job of looking after their kids. But with the help of a new Government campaign encouraging volunteers to give carers a break, one mum told JOANNE CONSTABLE how that little bit of respite can make the world of difference.

PARENTS of autistic children have an exhausting job of looking after their kids. But with the help of a new Government campaign encouraging volunteers to give carers a break, one mum told JOANNE CONSTABLE how that little bit of respite can make the world of difference.

MONIQUE Varley is the proud mum of a three-year-old boy.

But her son Matthew is like a ticking time bomb because if she puts one step out of line like putting his trousers on before his socks the blue-eyed boy can turn in to an inconsolable screaming child.

Matthew has autism, which is a condition that effects how a person communicates and relates to other people. And like other children with the social disorder the slightest change in his daily routine can lead him to become anxious and the only way he can express that anxiety is by crying and screaming.


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For Monique to cope she depends on playgroups and specialised opportunity groups which gives her respite but some other parents in Suffolk do not know about the care on offer or do not have access to such facilities.

Shared Care Network, a national charity, has launched a campaign to help families like Monique's, by encouraging more volunteers to help support the parents of autistic children.

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A poster campaign, backed by the Department of Health, was launched to urge people to "Give a little time and make a big difference" by becoming a short-term carer for a disabled child.

Monique, a single parent, welcomed the campaign and said that when her son becomes old enough to go to school she would volunteer to help other parents get the vital respite.

She said that when Matthew goes to his playgroup it not only gives Monique the time to catch up on house work and relax but it also gives her daughter Natasha the chance to invite friends over to play.

Matthew finds it difficult to interact with other people and so Natasha rarely invites friends to the house as her brother tends to get frustrated and lash out.

"It is just lovely to see my little girl play with a little child and I can get something done," she said.

But Monique believes that respite does not just help her but also helps Matthew to feel calmer as he can sense when his mum is stressed.

And looking after an autistic child like Matthew can be very stressful, as his life has to be compartmentalised to stop him from feeling anxious.

"Matthew needs routines and rituals to feel safe and secure. If anything happens that is not part of the routine, he can completely freak. I have to teach him that things are not the end of the world," said Monique, of Dains Place, Trimley St Mary.

Every morning the 35-year-old mum of two has to spread out a row of symbols on the kitchen table to prepare Matthew for what he will be doing that day.

He also has routines for getting dressed in the morning and going to bed at night.

"I have to be one step ahead, I have to think before I do or say it because it could have implications. I don't give in. A lot of people I know can't stand the screaming. It nearly drives you to destruction."

But Monique has learnt to cope with the help of the voluntary services like Felixstowe's St Mary's Opportunity Group as it gives the families the respite needed, the chance to talk to other parents and the opportunity to watch their children interact with other children.

Weblinks:

www.autism-awareness.org.uk

www.nas.org.uk

www.sharedcarenetwork.org.uk

The Shared Care Network report findings

There is an urgent need for more respite services to cover short periods for families who have a child with autism, the report found.

Parents of children with autism suffer from stress and exhaustion and of the 300 families questioned, 82% said they needed to supervise their child 24 hours a day.

They said their child's condition was often misunderstood and more than half got no regular help from friends and family.

Short break services were shown to help families cope by giving parents a respite from caring and they also gave children with autism the chance to meet new people and gain new experiences.

The most requested services were for baby-sitting and play schemes as well as more after-school clubs and family-based short breaks.

Shared Care Network said carers, who are paid an allowance for their time, come from all age groups and backgrounds and do not need experience as they will be given training and support.

Autism fact file

Autism is a life-long condition which effects how a person communicates and relates to other people.

Three common characteristics are difficulties with communication, social interaction and imagination.

People with autism can find it difficult to initiate conversations, maintain relationships and interpret facial expressions.

56 per 10,000 are affected by a type of autistic disorder.

Autism is four times more likely to occur in boys than girls.

Source: National Autism Society.

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