Finding support from birth is one of the most difficult problems that faces parents of severely disabled children. But a special needs nursery in Staffordshire offers such children the chance to learn safely through the stimulation of play - just like other children. Diana Appleyard reports.
Pamela Ball's two-year-old son Luke was born with a condition which meant his intestines were severely deformed and he had only one lung. "I was at my wits' end when he was born and I couldn't find a playgroup which would take him, " Pamela says. "Before he was one he needed to be permanently attached to an oxygen cylinder, and basically we couldn't leave the house."
When Luke was six months old a friend told his mother about the Peter Pan Nursery near her home in Newcastle-under-Lyme in Staffordshire. Luke was offered a place and free taxi transport to and from the morning sessions. He has now been there for a year and a half, and she says the nursery has proved a lifeline.
Many parents of severely mentally or physically disabled children say that the biggest problem in the early years is finding the right kind of help and support. A number are offered places at local authority nurseries or playgroups, but often provision doesn't begin until the child is two, and there can be problems if the child isn't nappy-trained or needs a lot of physical support.
Peter Pan is one of the few nurseries in this country offering specialist provision for severely disabled children from birth. It is run as an independent charity, and parents don't have to pay fees. There are five two-hour morning sessions for children each week, and parents can either stay in the parents' room, or use the session as a break from their routine of almost non-stop caring.
"There are a number of specialist nurseries attached to hospitals and schools, but there are just not enough playgroups for these children around the country," says Mary Howard, manager of the Peter Pan Nursery. "Here parents come along knowing their children aren't going to be assessed or tested and they aren't going to be asked endless questions. We give severely disabled children a chance to learn through the stimulation of play like any other child, using sand, water, paint, glue and dressing-up. They can safely try out all the activities they wouldn't be able to do at home, and many of the children here, like Luke, have been refused places at other local playgroups. "
The nursery, a member of the Pre-School Learning Alliance, costs Pounds 30,000 a year to run - a small sum compared with most special needs provision. It has a range of specialist equipment, from soft-play areas to bubble tubes and toys designed for children who have limited mobility. There are currently 16 children at the nursery, with a ratio of one qualified member of staff to every two children. The children's disabilities range from deafness and blindness to severe autism, cerebral palsy, and Down's syndrome. A number of the children also suffer from chronic asthma and one has epilepsy.
"Children are referred to us either by health visitors or by social services, and all staff are trained in first aid," says Mary Howard. "We're also attached to a health centre, so if any of the children have extreme problems there is a doctor we can call on immediately."
On entering the nursery the first thing that strikes you is the colour and the light. Everything is painted in vivid colours, and all the furniture is made of soft materials. "We have a number of autistic children, and they have no sense of danger; they'll happily dive off or onto anything. So we have to take particular care what we put into the room."
In the soft-play area three-year-old Ashley is playing quietly on his own. He has autistic tendencies, and will spend hours meticulously lining up toys. "When he first started here he had severe tantrums and found it very hard to play with other children," says Mary. "Now he will interact, and he's much more varied in his play." He can now also recognise every letter of the alphabet and recite numbers.
"We think it's vital the support is there right from the beginning. The first couple of years are the hardest for parents when they're struggling to come to terms with what's happened. The parents' room is vital as it gives them a chance to chat to other mums of children with similar problems and realise they're not alone."
Ashley's mother, Sally Brock, says: "Having a child with a condition like autism is very isolating at first. Ashley used to scream a lot and hardly sleep and he would never look you in the eye. We were offered a place at a local authority nursery, but they had no experience of dealing with a child like Ashley. Since he's been coming here he's much happier. I don't think he'd be half the child he is now if he'd been stuck at home with me all day."
Joanne Lockley's three-year-old son Ben has Down's syndrome. She says: "The nursery is so welcoming, and it's such a relief to talk to other parents. I was offered very little help at all from the professionals, and you only start to find out what is available when you talk to the other parents who've been through the same process." Ben, a very active boy, will now sit quietly and eat, and listen to a story. "He's made the sort of progress which makes him much easier to live with," says Joanne.
Mary Howard says: "When I first started the nursery I thought progress would be very slow. But often I'm amazed at how quickly the children come on in just a few sessions. They're receiving the mental and physical stimulation a parent just hasn't the time or the equipment to give them at home - especially if they have other children - and constant undivided attention from trained staff. " All the parents I spoke to believe the chances of their children being accepted at mainstream school have been radically improved by attending the nursery.
The problem, as ever, is funding. "We want to open a multi-sensory room, but at present, the costs are just too much," says Mary. The nursery is run by a management group of parents, who hold regular fund-raising events to keep it going. They aim to hold afternoon sessions as well, if sufficient funds can be raised. Some of the assistant are volunteers.
"It really has been a lifeline," says Pamela Ball. "The staff here are wonderful, and it means so much being able to come here every day. It may only be two hours but it makes a world of difference to me."
The Peter Pan Nursery welcomes donations and can be contacted on 01782 715219