Little Alice has a lot to learn from Aunt Jane: What is life like when two family members have Down's syndrome? Pretty good, by this account

IN 1963 Magdalene Wilkins took her infant daughter, Jane, to the John Radcliffe Hospital in Oxford to see a consultant paediatrician. 'The specialist was very abrupt,' Mrs Wilkins recalls. 'She took one look at Jane and said, 'Oh well, you've got a mongol baby. Don't expect anything. She probably won't even be able to talk, let alone do anything else.' '

On Wednesday, Jane, 29, showed me around the centre for people with learning difficulties in New Milton, Hampshire, where she spends her days when she is not working in a local pub. Self-confident and gregarious, Jane conducted the tour at a brisk pace.

'This is where we do crafts,' she said, indicating a room covered in murals, where a group of people was at work, knitting and drawing. A woman in the middle of completing a jigsaw announced that her neighbour was 'her bestest friend in the whole world' (her neighbour blushed), and a middle-aged man asked if Jane liked to go swimming. ' 'Cos if you do,' he added, pointing out of the window where the rain was sheeting down, 'there's a wave coming down the lawn right now.'

In the kitchen, where the centre's clients learn how to clean surfaces and prepare food, a man was doing card tricks at the table.

'You're gonna like this one,' he said, in a Paul Daniels voice. 'Not a lot.'

He completed the trick with aplomb that Mr Daniels would have been pushed to match. 'Hey, you're well confused, aren't you?' he said triumphantly, as his audience left. 'I've baffled you lot, I have.'

As Jane showed off the greenhouse and the music room, the drama room and the quiet room (where a young lad was playing an Erasure CD at deafening volume), everyone she happened upon seemed to be keen on a good time and a laugh. Especially Steve, her fiance, whose diamond and ruby ring she wears. Steve, 40, had spent the day operating the centre's shredder, turning newspaper into bedding for horses. The rest of the week he works in the centre's nursery. Did he grow flowers for Jane?

'No, he doesn't,' said Jane.

'I have done, dear,' said Steve, putting his arm around her shoulders. 'I have. And when we get married I'll give you loads. On our wedding day, I will, I'll give you loads.'

In a case of history repeating itself rather too often, Magdalene Wilkins's other daughter, Susan, had a little girl, Alice, two years ago, who, like her Aunt Jane, had Down's syndrome.

'It took us a while to accept it,' says Susan, sitting on the sofa at the house Jane shares with five other people with Down's. 'At first you don't really believe it, and you ask yourself all sorts of questions - why did it happen and so on. And you feel guilty, you think, 'It must be my fault, there must be something wrong with me.' '

Susan's four-year-old son, Ryan, does not have Down's. 'The doctors were very paranoid when I had Ryan because of the history in our family,' says Susan. 'They asked me if I wanted the amniocentesis test, but I said no, because I wouldn't want to change things. They gave me all sorts of extra scans and fussed over me so much that when I was pregnant with Alice, I decided not to tell them anything. Mind you, if they'd offered me the tests, I wouldn't have had them.'

After giving birth to Alice, Susan's medical experiences were in stark contrast to her mother's, a generation earlier. The modern doctors 'couldn't have been more supportive and gave us all the facts from the start', whereas Jane was more than four months old before Mrs Wilkins was told that she had Down's syndrome.

'I think it was the first time our local doctor had dealt with a Down's case,' Mrs Wilkins recalls. 'He couldn't bring himself to tell us. He kept on coming round to the house for no reason, and I felt he was trying to tell us something. You had a feeling something was not right, she was different from Susan; but in those days Down's was less in the public eye, you just didn't know. In the end, when the doctor plucked up courage, he told my husband privately. He couldn't face me.'

When her granddaughter was born, Mrs Wilkins once more experienced all the feelings of guilt she remembered from 27 years earlier. 'Actually, I felt much worse when Alice was born than when Jane was,' she said. 'My husband and I felt it must be our fault, there must be something hereditary; and we felt awful, because we knew what Susan would have to face.'

In fact, subsequent tests have revealed it was just a coincidence that Alice was born with Down's; there is no genetic predisposition in the family.

'I think things were much worse for Mum than for me,' said Susan. 'Partly because we got so much more support from the doctors than she did. And also, I've seen what Jane has achieved. I can see there is a real future for Alice.'

Later this year, Jane will be moving into a flat of her own. The flat, operated by the Shaftesbury Society, will be rather like sheltered housing for the elderly, with a resident warden on hand in the block in case anyone needs help. Recently when the Shaftesbury Society tried to buy a house in St Albans to convert it into a similar project, locals clubbed together and gazumped them to stop it.

At the moment Jane lives in a house, also run by the society, with another woman and four men (one of whom is Steve). Her bedroom is spotless. Pictures of her family are dotted around the place; on a shelf sits her collection of dolls, picked up on holidays abroad with her parents.

Steve's room is less pristine. Posters of West Ham players and wrestlers litter the walls. He shares the room with another man and both of them have a television set on the cupboards at the end of their beds. Steve says he doesn't mind if his room mate tunes in to the other channel while he's watching.

Was it privacy Jane looked forward to in leaving the hostel? 'Actually, it's not a hostel,' she reprimands, cheerfully. 'It's our home.'

Mrs Wilkins says that she would 'never have dreamt Jane could be so independent' when she first left the security of living with her parents. 'I suppose it's a maternal instinct to be overprotective and we didn't push her as much as we should have.

'It was a wrench when she left home. We missed her terribly. But it was something we'd always wanted. We've seen other parents of handicapped children die and then there is nowhere for the children to go, except into mental hospital. Now we don't see her sometimes for three weeks at a time because she is so busy.'

On a pinboard in her bedroom, Jane has her week timetabled, like a student. She goes country and western dancing in Bournemouth once a week, attends a drama group and is starting cookery evening classes in September. On Mondays she works at the Hare and Hounds pub in nearby Sway, washing up. Alan Liversedge, the landlord, says that if Jane is set a task, she'll do it.

'And we don't find pointless work for her; she does a serious job, something someone else would have to do if she didn't. Evidently they have difficulty placing Down's people in work round here. I don't see why. Jane's gained so much since she's been here. And it's a real pleasure for us. She always leaves beaming.'

Jane travels to work on the train. Once she got on the wrong one, the express, and ended up miles from work. Fortunately, during pre-work experience training at her day centre, she had practised for such an eventuality: when it happened, she coped admirably.

The training is an extraordinarily detailed course in dealing with daily life: from going to the Post Office to collect benefit to putting on a duvet cover. Each task is broken down into stages, with endless potential problems stitched in along the way.

'Step by step,' says Jane. 'We learn everything step by step.'

'They have no worries, so they're not frightened of anything,' says Mrs Wilkins. 'Maybe now she's more independent, managing her financial matters, real life will catch up with her. I don't think that she and Steve could cope on their own. I don't think she'll get married, and I think she accepts that. They'll always need support.'

In north London, Michelle Huberman is suing her doctor for pounds 1m because, she claims, he failed to give her all the information about tests for Down's syndrome. She did not have any tests when she was pregnant, and gave birth to a girl with Down's nine months ago. Though she loves her daughter, Ms Huberman says, if she had known, she would have had an abortion.

If there were a miracle cure for Down's, a pill that could eradicate it overnight, would Mrs Wilkins want Jane to take it?

'It's very difficult, because obviously you love the person for what they are. And we love Jane very much, and wouldn't want her to be different,' she says. 'Mind you, I wouldn't condemn people who find out their child has Down's and want to have an abortion. No, no, no. People are different and everyone has to cope with this in their own way.'

(Photograph omitted)