Mary and Alan Sage were determined that their third child Paula, who has Downs Syndrome, should be brought up the same as their other children. "We wanted her to develop, as far as possible, like an ordinary child," Mary recollects.
Ordinary is not the word that comes to mind when you see Paula's stellar performance - gloriously funny at times, at others poignant and affecting - as the 21-year-old daughter with Downs to Lindsay Duncan's desperately protective mother in the film Afterlife, opening in London this week. Indeed, this is a lead role, with Kevin McKidd as her other co-star, to make Paula the envy of many ordinary young wannabe actors.
The talents of children with Downs are being recognised increasingly in the arts. But for these children to seize the kind of opportunity offered to Paula, now 34, whose only acting experience was belonging to the One in a Hundred drama group for children with learning difficulties, the style of parenting they get throughout their growing years can be critical.
Sarah Waights at the Downs Syndrome Association, who has written a 50-year history of attitudes towards those with Downs, says being overprotective and assuming that little must be asked of these children was normal. It was not uncommon to see parents wiping the noses or tying the laces of grown-up young people with Downs.
That is certainly not the way of most parents these days, and the Sages were very clear from the beginning that if they assumed Paula would be able to do the things her ordinary peers could, and then took on difficulties and problems as they arose, they would give her the best chance of achieving her full potential.
"Paula had a seven-year-old brother and two-year-old sister when she was born, so we treated her just as we had them. Except that we did bring in a speech therapist."
Their determination that Paula should grow up seeing herself as part of ordinary society meant that a mainstream primary school was chosen. The Sages had not encountered prejudice until then: "Let's say there was a bit of convincing to do before the school would take her," says Mary drily, "but when the headmistress met Paula she was won over. Then in her third year, the class teacher made it plain she didn't want a special needs child. Paula picked up her antipathy and became unhappy. The standard of work she had achieved went right down. We knew we had to do something to help her so we called in an educational psychologist, who sorted things out."
Paula fitted well into the secondary mainstream, getting some academic teaching at a special needs school. But her parents saw that although children accepted her and there was only very occasional unkindness, she was not chosen as a particular friend by any of her peers. This can be one of the hardest things for parents of Downs children, who observe children's distress at being isolated, and not invited to homes or out on social events. But Paula's siblings included her when their friends came home, and the family fostered a friendship with another Downs child who became, and remains, Paula's special friend.
"Of course it hasn't all been a bed of roses," says Mary, "but I think Paula's experience of growing up has made her confident enough in herself that when this film opportunity came up she was well able to cope. It was my husband and I who were nervous, wondering if she would handle all that was asked of her, what she would make of the very coarse language in her part - it is language we never use at home - and how she would produce the emotions required to order, particularly the scenes when she cries, because Downs children do not often cry. And how it would be if things didn't work out. But what we have seen is how very capable and independent she has become."
Anita Bennett remembers the way she was told that her daughter Isabel, now 16, had Downs, "as though it were a death sentence." She went to live in Brazil with Isabel's father, Anthony, and her older son Ruari, from an earlier relationship.
"There we found treasure: a school and research institute for Downs children. Isabel had physiotherapy, speech therapy, lessons in using a spoon to strengthen her mouth and tongue muscles. The school had older children who were incredibly able older role models."
Anita returned to Wales where she had Francis, now 13, but soon afterwards her relationship broke down. Mainstream primary was a happy environment for Isabel, at first, but then, "by the time she was seven the glow had worn off. The teachers had no special-needs training and their hands were tied by the national curriculum. Isabel lost all confidence in her art work, she knew she was bringing up the bottom of the class and became disruptive at home."
As a single parent with two other children, Anita realised how difficult it would be for her to give Isabel the stimulation and support she needed. She applied for funding to send her daughter to one of the Steiner Camphill community schools: "I saw how good life could be for children in a protected place, walking to school, learning independence. They prioritise art, music and drama, alongside academics. They have specialised in teaching Downs children for 50 years and the children are happy and stimulated. And although it's residential, parents are encouraged to be involved."
When Francis received a "generous bursary" from Clifton College in Bristol, it was, says Anita, "the best gift I could have had for Isabel. With Francis happy and thriving, I could focus on Isabel. Getting funding was a protracted battle but it has paid off. Isabel is so happy, She has made such progress academically - but even more as an actor and an award-winning watercolour painter."
Anita knows the arguments about how she should keep her child in the mainstream and educate her in the "real world", but says, "That world left my child at the bottom of the class instead of seeing herself achieve. As she grew older she was experiencing things that I see happening to other Downs children as they grow up: normal children don't want to hang out with them and that is very painful."
Anita's dream is that the Camphill experience, plus her own efforts to get Isabel to try new challenges, means she will be able to live in a village community rather than "a lonely bedsit with supported living." She adds: "Isabel loves community living, loneliness is not a problem and I have to think of what will be best for her, not just as a child, but when I am not around."
Mary and Nick Taylor celebrated the birth of Charlie, their 14-year- old son with Downs, and "we've been doing so ever since. We absolutely adore him," says Mary.
But they had no illusions that it was the same as having an ordinary child, so they turned to the local Downs Syndrome Association in Norfolk where they live and which has a group for new parents of babies and pre-school children. "Meeting other parents was a huge help in sorting out practical problems, but it was also a vital psychological help because there is a process involved in accepting that you have a child with a disability."
Because Mary spent a lot of time teaching Charlie the alphabet, he learned to read with word recognition at the same time as his peers, and now devours Harry Potter. The Taylors believe that mainstream school has helped him mix easily with everyone, and feel that he belongs. At his secondary school he feels like "one of the gang," says Mary.
"Of course we were lucky. Primary was very good; they included Charlie in everything and he was made head boy in his last year. He grew six feet."
The equally caring secondary school allowed Charlie to spend first half a day, then two days a week there before he moved over. "It was very helpful for him to be able to show friends the ropes in their first week," laughs Mary.
"We also felt it was important for Charlie to know other children like himself," she explains. "He knows he has Downs and it allows him to share experiences."
The challenge for many parents of Downs children is to help them develop an autonomy that takes them confidently into the world, but not into trouble or danger. "We let Charlie cross the road and go to school on the bus with his friends," says Mary, who hears stories of children getting on wrong buses, chatting to people who may be untrustworthy and being brought home by the police: "My heart is always in my mouth. But you owe it to children like Charlie to help them be independent."
