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A helping hand that can make family life a joy again

"I LOVE my daughter to bits, but it can wear you down.

SUPPORT:  Mirren Lark, pictured with mother Gail, stays with a carer for two nights every three weeks, giving her parents a break. Picture: Iain McLean
SUPPORT: Mirren Lark, pictured with mother Gail, stays with a carer for two nights every three weeks, giving her parents a break. Picture: Iain McLean

Looking back, I was down. We were at the point of asking 'would somebody help us?'" says Gail Lark.

"We never had any time to ourselves. We didn't mind, but we were reaching crisis point."

She is talking about the difficulties she and husband Steven faced before Enable Scotland helped set up respite care breaks with its local Lend a Hand service four years ago.

The couple's only daughter, nine-year-old Mirren, has had cerebral palsy and learning difficulties since birth, uses a wheelchair and needs care 24 hours a day, seven days a week. She has a tracheostomy to help her breathe at night and uses a gastric peg for night-time feeding.

Now Mirren stays overnight with a carer for two nights every three weeks.

"The impact on our life has been amazing," says Mrs Lark, of Inverkeithing. "Steven and I tended to forget about each other at times. Now we have time to do something."

It can be hard for anyone who has not experienced it to understand just how big a responsibility caring for a disabled child can be.

Severely disabled children may have physical and communication disabilities, major health problems or challenging behaviour. Many wake regularly at night, meaning parents never get a full night's sleep and have little time to themselves during the day.

Families often find they struggle to get services and support, and people with disabled children are more likely to have low incomes and live in deprived areas.

As well as caring they may have to deal with other problems - 93% of children with learning disabilities are bullied, and many parents have to give up work to care for their child.

It means they can simply become exhausted, emotionally and physically.

That is where a service like Lend a Hand can make a difference. Allowing time for parents to be together without the pressures of the caring role can help protect relationships.

A respite break can allow more time to be given to other, non-disabled siblings - parents feel guilty for neglecting their needs, or it can simply permit some sleep.

Enable's short-break service links families with a regular carer. In the Larks' case that person is the nurse at Mirren's school, Brenda Johnson, who takes her regularly.

Swapping cars with the Larks for the duration of the short breaks, Ms Johnson takes Mirren to the cinema, or Deep Sea World. Her adult children try to come home when Mirren is staying.

"She has become like an extended member of their family. They are amazing people. They think they are lucky getting Mirren, but for me it means being able to have a bath without listening for her in her bed.

"It probably sounds simple to people but that can be a luxury," Mrs Lark explains.

The Lend a Hand service - just one of the Enable Scotland projects which could benefit from reader donations to this year's Herald Christmas Appeal - came into its own when Mrs Lark's mother died.

She says the support she received then from the Lend A Hand service's Dysart-based manager Margaret MacKenzie was invaluable.

"The people who work in this area don't just do it for the money, they are special people. I can't praise the service we get enough," she adds.

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