WHEN their son was born, Jo and Malcolm Blackburn discovered the harsh reality of what it was like to care night and day for a child with special needs.
It was an experience that led, many years later, to them taking the decision to become respite carers for disabled children.
“When our son was a baby he had to be fed every hour, day and night and given medication. We never got much sleep so we know what it is like,” said Jo, 45.
“But we had my mum and dad to help us so we could get a break. There are people who don’t have anyone,” she added.
Jo and Malcolm’s eldest child David, 21, was diagnosed in infancy with a serious heart problem, hypertrophic cardiomyopathy, and is also profoundly deaf. The entire family, including sister Amy, 14, communicate using sign language.
Today David is a joinery student and doing well, but Jo and Malcolm have not forgotten how difficult life was when he was younger.
Four years ago the couple, who live in Hartshead Moor, registered with Kirklees Fostering and Adoption Unit. Malcolm, 56, had been made redundant from a management position with a packaging company and Jo wanted work that allowed her to be at home for her own children.
“We knew someone who fostered and they suggested that we consider it,” said Malcolm. “Then, you know how it is, everywhere we went we kept meeting foster parents. We have a holiday caravan in Lincolnshire and two of our neighbours on the site are fosterers. One couple were there with five foster children,” he added.
Because he had been working long, stressful hours, which took him away from the family home, Malcolm thought that fostering might give him a better work/life balance.
“But you’ve got to really enjoy it,” said Jo, who has had to take courses to learn not only about fostering but also how to manage the medical conditions suffered by the children they care for.
At the moment they are looking after two able-bodied foster children and provide respite care for six severely disabled children aged between six and nine. Their five-bedroomed home has two ground-floor bedrooms, one with adaptations.
“We have the children two or three times a month, either for overnight stays or for a weekend,” said Malcolm.
“For the parents it’s their only opportunity to relax or spend time with their other children. It might be a chance for them to do something simple like going to the pictures or just getting a DVD and sitting down to watch it at home without having to think about anything else,” added Jo.
Children requiring respite care can have a range of disabilities, for example cerebral palsy, or be wheelchair users and have speech or hearing problems.
Most of the Blackburn family’s respite children suffer from cerebral palsy, all are wheelchair users and unable to speak. Some have to be fed through a gastrostromy tube – directly into the stomach – and most are on complex medication regimes.
“All our children,” said Jo, “have to be fed, changed and washed. We do a lot of wiping of chins. They can’t do much for themselves but we try to give them choices about what they want to eat or what they’d like to do.
“It’s quite a physical job so you have to be reasonably fit.”
Malcolm believes that caring for special needs children is a job for a couple or a single person without other children. “I think you’d struggle on your own, especially if you had more than one child,” he said.
Both Jo and Malcolm have become adept at interpreting the needs of their ‘children.’
“I think having David helped us because we are more keyed up to people who can’t speak and the little nuances that say something is not quite right,” explained Malcolm.
At the moment the couple are fostering a baby and find that they’re more than fully occupied. “When we are caring for school-age children we do have time for ourselves and get out for walks and lunch occasionally,” said Malcolm. “But when the baby arrived we put our gym memberships on hold and we’re pretty tired because we’re doing two-hourly feeds,” he added.
“I go to bed at 8pm,” said Jo, “and sleep until 2am and Malcolm stays up until midnight and then sleeps until 8am, so we both get our six hours.”
As Jo and Malcolm talk about the many children who have come into their lives in the past few years it’s clear that they get a lot of pleasure from caring. “We’re helping people,” said Jo. “And it also makes you more appreciative of what you’ve got.”
The couple’s daughter Amy is also learning a valuable lesson. “Amy will feed the baby and sit and nurse her while I’m getting the tea ready. She also helps out with the respite care. She’s much more aware of how fortunate she is and the sort of life other children have,” added Jo.