BEING the parent of a child who is HIV positive is not easy. The secrecy, they agree, hardest part. "HIV is seen as a monstrous virus and those who carry the virus within them are viewed as monstrous," explains Elizabeth, whose five year old daughter Julie is infected with the virus.

The Department of Health, she says, does little to educate people any differently about AIDS. "Children cannot form their own groups like gay men or haemophiliacs and their parents are often rendered immobile by pain, and often, sadly, shame and guilt. Many stories are told to keep our secret safe."

Mary wishes that her two children had cancer rather than HIV. "They would be treated better and there would be a bit more compassion. I took the older one to an ear specialist last week and he put on gloves just to look in her ear. I bet he doesn't do that for anyone else. I wonder if the kids will notice the gloves as they get older."

On one occasion when Mary, who was infected through her partner, brought the youngest child Stephanie (4) who had a temperature, to a GP the doctor refused to touch her.

"She refused to take her temperature and wouldn't look down her throat or anything. She sent her straight to the hospital. Word got out that she was HIV and kids from around the road that she used to play with started crossing to the other side and wouldn't touch her, saying: `Don't play with her she has AIDS'. She was only two years old. It was terrible."

Not long afterwards a window in their home was broken by a stone being thrown. "I felt like we were lepers. It is bad enough having to deal with all the other crap. People just don't understand. Even my own brother, who loves the children, wonders if he can `catch it' from kissing them. There is so much ignorance."

Elizabeth says that she keeps all the medicines and information sheets on AIDS upstairs and out of sight. She always has a story ready about Julie being on antibiotics in case they are discovered. Going to the hospital is another worry. "You always have to have a story ready in case you are seen. I am careful never to get into discussions about HIV in case I appear too knowledgable. I find it so hard to trust people," she says.

Kathleen's son John (4) is HIV positive. A former drug addict, one of the hardest things she has to bear is the fact that she sees his infection as her fault.

"At times the guilt is unbelievable. To think that you passed on this deadly virus to an innocent young baby. When I was diagnosed I was utterly in shock. Then I had my son tested and he was positive as well. I was suicidal. Now I wonder how long I am going to have with him - until he is five or 13. He was born so healthy, a little baby who had done nothing to anybody."

THE secrecy comes a close second. "At the beginning I was going to the hospital every day and I know the neighbours were wondering what was going on. I got the doctor to write a letter and say that he had this thing that was a really big word. It was hard to say but much easier than saying AIDS."

One of the biggest difficulties, all parents agree, is that there are not enough support services, particularly to deal with the problem of telling the children that they are HIV positive. "They do a great job at the hospital [Crumlin] but it would be nice to get more care. I would like a counsellor," says Mary.

"The kids could build up a relationship with her and when the time does come the counsellor would be a friend and not some stranger who would come into the room when they are 13 years old and tell them they are HIV positive. It is great to meet the other mothers because you are talking to people who really realise what you mean.

Elizabeth agrees. "The children who are now benefitting from wonderfully hopeful drug therapies will grow into young adults and must have a fully developed sense of responsibility. As well as providing the medical care, the Department of Health must help parents and children, to grow with this condition in a responsible way.