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Angela Wellon with her nine-year-old son Edward.
Caring for carers
Sheryl Moore18/ 6/2008
ANGELA Wellon always knew there was something wrong with her third child, Edward. Even in the early weeks following his birth she had anxious doubts about his development.
Like many babies Edward didn't sleep and had difficulty eating. He was also extremely clingy and screamed as soon as he left his mother's arms. But as the months went on, it was his refusal to make eye contact and failure to respond to basic stimulus that began to confirm her worst fears.
"I would at look him at there was no recognition at all," she says. "Even when I made faces or played with toys, Edward would not look at me and was totally unresponsive."
When Edward was nine months old Angela took him to her GP. But instead of focusing on Edward, both her doctor and health visitor believed it was Angela with the problem, diagnosing post-natal depression.
"They thought I simply couldn't cope," she says. "And was blaming Edward for my own problems."
However, as the months passed Edward's behaviour became more alarming. Angela says: "At 18 months he started making jam toast. And if anyone tried to help him, he would throw a tantrum and refuse to eat it. He was also sleeping very little and would not go to bed until at least midnight, then be up at 6am."
Exhausted
Angela says the family was exhausted, and Edward's behaviour was having an effect on her older children Michael, 17, and Sollia, 13. Edward was also her husband Fred's first child and she says he found it difficult to cope. However, after getting a social worker involved and numerous visits to specialists, Edward, at six years-old, was finally diagnosed, and Angela was able to get support.
She says: "He was diagnosed as being on the autistic spectrum as well as having dyspraxic tendencies. Edward also has hypotonia - a condition of abnormally low muscle tone." For Angela, 37, of Shaw, Oldham, the diagnosis was an immense relief. "I can't describe the feeling," she says "After all those years of fighting for Edward and having doctors tell me I was depressed, the relief was enormous."
While Edward, now nine, has had a range of physio, occupational and speech therapies as well as extra-support in the classroom, the demands of having a child with disabilities are enormous. And for those parents struggling to cope, help is often unavailable if their children's disabilities are considered not severe enough to warrant extra care in the home.
Now, inspired by her experiences, Angela has launched a not-for-profit company to provide respite care to families across north Manchester. With funding from the Inspiration Foundation - a charity set up by Manchester-based corporate finance house Ford Campbell to help support business start-ups in disadvantaged areas - First 4 Disabilities is offering a range of home-based services. These include domestic duties such as cooking and cleaning to personal care like dressing, feeding and bathing.
Social activities
First 4 Disabilities also offers childcare as well as social activities and family support groups.
Angela and her five-strong team of certified carers can tailor packages to suit and, more importantly, support is offered in the home. Angela says: "The government has set criteria for offering home support, but it is for those with complex needs such as children who are severely autistic or on a ventilator.
"For those that don't meet the criteria, respite services are scant and while they have NHS medical treatment, care, for some, stops at the hospital.
"Recently the government acknowledged families have a right to respite services and addressed the problem with more foster carers. But a large number of parents do not want to break up the family unit."
While there is a £10-per-hour fee, Angela and her team will help families apply for local authority funding, which is available to help cover the costs.
First 4 Disabilities also enables parents to take a much needed break, whether returning to work, a trip to the shops or an evening out. As Angela knows, with a disabled child in the house things like that can be a mammoth task.
She says: "Edward likes routine and each family member has their individual roles. I, for example, have to get out of bed as soon as he wakes and nobody else can fulfil that position.
"If we run out of milk in winter, Edward will refuse to leave the house and go to the shop. When this happens, I have to draft in help to get a pint of milk. Everything has to be planned and routines observed or he gets extremely upset.
"Having a disabled child can be a wonderful but challenging experience, and at First 4 Disabilities we are committed to helping families and children achieve their full potential."
The Inspiration Foundation has raised more than £50,000 to help start social enterprises from disadvan- taged areas. If your business fits this criteria, contact Kimberley Stephenson on 0161 819 2500.
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