Finding a path back from parental despair

IT was a heartbreaking story. A desperate mum, at her wits' end, jumping from the Humber Bridge. In her arms, her autistic son. Two tragic deaths. Such a shocking waste of life. What could have caused it? What could possibly drive a person to such an act? Libby Fletcher knows. When she heard this awful story, she felt a twinge of recognition. It may have been years ago, but she herself had reached such depths.

She was only thankful she didn't act.

Looking at her now, a smartly dressed, middle-aged woman, it's hard to think of her like this, yet when she speaks of it, a single tear rolls down her cheek. "I've been there, " she says quietly. "I think a lot of people have. People tend to say they only give special children to special people and that's such an irritating thing to hear because it isn't true. It's just a lottery."

As chairwoman of Ryedale Special Families, a group whose children have special needs, Libby knows more than most about the subject. Her own sons James, 26, and Tom, 23, may now be grown up, but she remembers their childhood well. While James was healthy, Tom was born with several problems. "Tom arrived in the world with talipes, an incredibly deformed club foot, " says Libby, 56. "Subsequently we discovered that there was brain damage, but it took a long time for anybody to actually be brave enough to say.

I was the mother who must be protected."

When, at the age of three, Tom was classed as having special needs, Libby, who lives in Thornton le Dale, North Yorkshire, says it made no difference.

"There was never a great deal of discussion about it, " she says. "I felt incredibly isolated. There was very little in terms of support and you don't burden your family. This is your problem - you try to deal with it."

Unusually, while Tom had difficulties, James was at the other extreme. "I think both my children have special needs but at different ends of the spectrum, " says Libby. "James is extremely bright, musically gifted, and gifted in other respects. He's now a cancer research scientist in Seattle."

Seeing the reaction to James, who was widely lauded, was sometimes hard when Tom was ignored. "People were very delighted to meet his (James's) special needs, " says Libby scathingly.

"There's a lot of support out there for people who are identified in that respect. I saw the disparity."

Thankfully, Tom's enrolment at Wellburn Hall School, near Kirkbymoorside, marked a drastic change. "It was amazing, " says Libby. "I did get the support when he reached Wellburn Hall but outside there was still very little."

It was this feeling of being alone, of having no one to help her cope, that led Libby to look for help. By now Tom was in his teens, and not so needy as before, but still she sought a prop. "Over eight years ago, a group of parents began meeting on a regular basis, bemoaning the fact that there was so little respite care, " she says. "I hadn't sought respite care for Tom - I always thought there were people in more difficult states than I was who deserved it more. My perception was very distorted."

Armed with an agenda, and with each other's support, the group began looking into building premises. But much to its disappointment, this was not to be.

"We had meetings with statutory agencies and other voluntary agencies and we even reached the point where we had an architect drawing up plans for a respite care centre, but there was the inevitable insufficient funding, " says Libby.

Yet despite the setback, the group felt its efforts should not be wasted. "This little hard-core group of parents said 'why have we spent all this time meeting and talking about something when we're just going to go back to where we were before?', " says Libby. "'Can we not put some of the goodwill that we've established out there and see if we can find some form of respite for people when they reach breaking point?'" So Ryedale Special Families was formed, originally operating from a tiny office at Wellburn Hall. Its current premises - at 121 Town Street, Old Malton - are thanks to Lottery funding.

"When we started as a tiny group, people said 'it's a whim. It won't last', " says Libby. "Initially, we supported eight families, and now we support 270. We never envisaged reaching this point."

The group's building is a lively place, serving as both an office and a drop-in centre. It has a sensory room and will have a sensory garden, and there's the chance to meet professionals in a friendly setting. Libby says it's been a godsend. "Looking back to Thomas, every environment was daunting, " she says.

"People come here and it's like home."

THE key objective of the group is providing respite and through dedicated staff, it offers tailor-made care. But more than this, it strives to counter loneliness, to give a sense of belonging. "A lot of parents have actually had input in the building, " says Libby.

"People feel it's theirs and it's that feeling of ownership that's so important to parents. It's like the activities we do. We have a ball. Everybody accepts everybody else's children and that in itself is life enhancing."

It was with the aim of sharing what they'd found that some Ryedale mums got together to write a book. As Libby explains, each had their own perspective. "I'm in a different place to the others because I'm at a stage where my son is almost moving on into adulthood, so I have a story of survival to tell, " she says. "We did say as a whole that the book was what we would have liked to have read when our children were born and identified as having special needs."

A mixture of poetry, diary extracts and frank accounts, Altered Images is a handbook spanning from the womb to adulthood. It speaks of sadness, but also of terrific strength. "For me, what I've tried to say is I didn't challenge the professionals, " says Libby. "I've learned from seeing these amazing young mums coming into Ryedale Special Families that challenging the professionals and accepting your own instincts is very important. Professionals don't want to see emotions but it's how you respond to a child in need."

Among this new breed of battling mums is Heidi Ridgewell, who's been present throughout the interview. When she finally gets to speak, she does so forcefully. "I've had to live through a woman saying 'I don't know why they bother keeping these children alive' to my face in a restaurant, " she says. "I'd like to stick this book under her nose. I wish I could say attitudes like hers were a minority but I don't think they are."

A cloud on the horizon is that the Lottery, so long a lifeline for the group, is soon to withdraw 75 per cent of its funding. Yet while it's still so badly needed, it means to go on. "The reason that we're still here is that the support for us as an organisation is very, very strong, " says Libby. "Lots of charities have gone to the wall but we have a gut feeling that we can still go out there and find the funding."

In the meantime, she hopes the book will be a mouthpiece. "We don't want perfect, " she says. "Life isn't about perfection. But the book is a sort of recipe for living."

Altered Images (York Publishing Services, £12.99), is available from Ryedale Special Families, 121 Old Town Street, Old Malton, North Yorkshire YO17 7HD (01653) 699000.

IMAGINE Imagine living in a world where people are valued for being whoever they are.

Where intellect is not valued over a beautiful soul Where doing is not encouraged over being Where dreams are valued for the quality of their dreaming Where the awareness of judgement, suspicion and mistrust have run their course and been discarded in the name of love Where all are encouraged to dream dreams, reach potential, fly and soar, below, around and beyond.

Imagine.

A Mum MOTHERING SUNDAY Give mothers tools.

Tools to save their children, Not to dig their graves.

Give mothers hope.

Hope to see a future, Not hope that lives will end.

Give mothers dreams.

Dreams that show tomorrow, Not dreams of yesterday.

Give mothers flowers.

Flowers for a dinner table, Not flowers for a grave.

Libby Fletcher