Sex education is vital - but difficult to teach. Hilary Wilce meets a nurse who can help
Nurse and author Jane Keeling says people can have funny attitudes towards the emotional development of youngsters with learning difficulties. They either think they are overgrown children, without sexual feelings, or that they are sex maniacs.
"I remember when I was doing my nursing training being taken round a long-stay hospital for people with learning difficulties and being told, 'Careful of those with Down syndrome. They're very highly-sexed. They'll grab you!'" she says.
HOW TO TEACH ABOUT SEX
Thank goodness, then, for her detailed and matter-of-fact new resources, which introduce these sensitive issues to young people, and teach teachers and parents how to use them.
"I'm a nurse and a mum and an educator. All these things came together. I knew these young people's needs weren't being met. Everything was burning inside me. I knew exactly what I wanted to say and it just came out," she says.
The three packs cover subjects from puberty to periods and wet dreams, and are designed to be accessible even to youngsters with profound communication difficulties - they use pictures and symbol cards to put ideas across. Book one deals with general issues of puberty. A second is written for boys, and a third for girls.
Simple but explicit line drawings show how boys' and girls' bodies change, and how to cope with everyday life with these more adult bodies: for example, how to use both public and private toilets. The boys' pack has stories about a young man experiencing a wet dream and about him masturbating in his bedroom. The girls' pack also deals with masturbation, and has a story about a girl having her period and changing her sanitary pad.
Messages need to be simple, clear and repeated often, says Keeling, and the same messages need be given at school and by everyone at home, including siblings and grandparents. Her books give basic information about sexual functions and show adults how to use gestures and symbols to get ideas over.
They are not only about sex. "A lot of it is about personal hygiene, how bodies change, which parts are private, what you show in public, when you touch people and when you don't, and where it's appropriate to show your sexual feelings."
This is all based on her direct experience. She is a nurse who has specialised for years in sexual health and family planning, running outreach clinics and liaising with schools and colleges in Nottinghamshire.
But she also has a son, Simon, who is profoundly autistic and now hitting puberty.
"Having Simon made me realise the importance of the messages we deliver to him, and how important it is to keep repeating them. We call touching his genitals 'rub, rub'. When we see him doing it, we tell him, 'Not rub, rub here, Simon. Bedroom. Simon's bedroom.' We take him to his bedroom. We don't want to tell him it's wrong, but we do want him to know where it's right for him to do it."
Even before Simon was born, Keeling was interested in working with people with special needs. "When I was a practice nurse there was a woman in her 50s who kept coming in because she was wetting herself. Eventually, I persuaded her to have a smear and discovered she had awful cancer of the cervix.
"She had never had a smear before. It was such an eye-opener. After that I looked through all the medical notes in the practice for women with disabilities who might not have been checked, and made sure they were. I'd do home visits, if necessary, with a torch and a mattress on the floor."
Later, Keeling worked for Sure Start in Ashfield, liaising with schools and speaking to women's groups. But her interest in children with special needs led her to ask a local special school if she could help.
RIGHT AND WRONG
There, she says, her first class was life-changing. "It was a group of seven students who were due to leave school for college in three weeks.
There was one girl who had been raped more than once, and two young men who had been classed as sex offenders because of inappropriate behaviour. But they had never had any sex education."
She knew this was only the tip of an iceberg. "A lot of behaviour is buried because sometimes young people don't know what's right or how to report things. Also, these days, young men can easily access porn, without having any teaching about what's appropriate behaviour or not."
Another time, she was at an event at a local college, manning a display about love and relationships, when she met a young women with learning difficulties who was in tears. It turned out that, after school, she had been sent to one day centre and her boyfriend to another, and they had never communicated again. "Really, it's Dickensian, some of the things we do to them," she says.
Keeling wrote her books last year and now, as word trickles out, demand is growing and she is increasingly asked to speak on sexual health.
WHAT TO SAY - AND WHEN
"When a child has learning difficulties, there's a delay there, even though the body's changing," she says. "Simon, my son, has reached puberty, but he still watches Bob The Builder. But there's often a fear that if we accept the developing sexuality of a young person we'll be encouraging sexual behaviour. My packs are designed to help young people live a safe life and a happy life. And to do that you have to give them as much guidance and information on how to take care of themselves as possible."
* Growing and Learning is a set of three books and picture cards. It costs pound;65. www.growingandlearning.co.uk