‘Caring – it’s a 24-hour job…’

Pam and husband Steve look after Graham - a 25-year-old with Down's Syndrome and autistic traits whom they have fostered since he was two weeks old.

The couple from Heath Close, Colehill, have two daughters of their own now aged 30 and 24 who grew up with Graham and helped to care for him.

When Graham first arrived at their home he was not expected to survive more than a year as he has a serious heart condition.

Pam, 56, joked: "We didn't plan to have a Graham but somewhere along the way we must have said we'd consider a child who was disabled.

"I always say it's different to be a carer for a child who is disabled than an adult who is disabled.

"Once you've taken on a child like Graham they are with you all of their lives.

"Even if they leave you are still their parent and carer, which is a bit different than looking after someone later in life who isn't going to live as long as you and you know the caring is going to come to an end."

Caring for someone who has special needs is a "24-hour job" explains Pam.

Graham has no sense of danger and would happily open the front door and wander off if not supervised.

He also enjoys turning taps on and knobs on the cooker added Pam.

"It's a 24-hour job because he has no sense of danger and not many skills in looking after himself.

"It's like having a toddler really."

Like many with Down's Syndrome Graham is very physically affectionate and thinks nothing of hugging strangers in the street.

Most people are very nice about it, explains Pam.

"Not everyone with Down's Syndrome is the same.

"They all have certain traits in common and they are all very physical," she adds.

"I have to help him to wash and he can't prepare food.

"He can make decisions and knows what he likes and what he doesn't like but needs help with most daily activities."

One of the hardest things to cope with is Graham's habit of repeating things.

If it ever becomes too much husband Steve is normally on hand to take over, she says.

"A lot of the time it's fun but his repetitive behaviours are relentless.

"It's things like he'll repeat phrases to engage you."

The couple get some respite from looking after Graham.

He attends a day centre four days a week and they get respite care some weekends.

Sometimes a carer comes to the house to take Graham out for the day and they practise social skills in a public environment.

What many people do not realise is the effect caring for a special needs child has on the rest of the family, adds Pam.

She said: "Graham is a member of the family and I can't imagine life without him.

"He very quickly became one of the children.

"But it's the family who are affected.

"The whole family becomes a disabled family.

"Siblings also take a back seat and they are as much carers as the parents and often wipe noses and bottoms.

"There are things you can't do as a family when you have got a disabled child."

However, overall the caring experience has been a positive one she says.

"It's taken me into another world.

"I have become the governor of two special schools.

"I do a lot of campaigning on behalf of carers and people with learning disabilities and represent their needs at local government level.

"It's given me a new direction in life."