This was a question my daughter used to ask me when she was around 10 -13 years old. It's heartbreaking to break the truth, but parents will often hear this sad refrain and wonder how to answer.
Here are my thoughts:
It's true that females with PWS are unlikely to regularly menstruate unless they have sex hormone therapy and this is now a recommended treatment because it helps strengthen the bones, help prevent kyphosis (forward curvature of the spine) and helps make the person feel more like their peers; more 'normal'. Many girls will still menstruate, even lightly and irregularly, and if sexually active, do run a risk of pregnancy, but a large percentage of our PWS population will not have sex hormone treatment, will not menstruate, may never be sexually active and still desperately want their own babies.
Girls with PWS love babies - so do the boys, but the girls have a strong nurturing streak as often seen with their attraction to anyone's baby! Many also have large collections of dolls and act out their fantasies. This may extend to fantasies about boyfriends, and I mean really strong fantasies that they insist on being true! This calls for patience and understanding. If it gets more unrealistic and even confrontational, then the collaboration of parents with professionals, school teachers, counsellors, and the wider family (particularly people whom the child admires and sees as an 'expert') to help unravel the fantasy even to the point of explaining, for example, that "although, because of Prader-Willi Syndrome, your body works a little differently from others, so that you may never have children - and many, many women in the world don't, or can't - but your sister (cousin, friend, etc) may still let you help care for her baby. You may well become an aunty to lots of children!" If the child hears the same story from all, then they generally accept that what they are hearing is correct. When the child is ready to understand more about their condition, you can either do this slowly, bit by bit, yourself, or seek professional help.
The collaboration of parents with professionals helps legitimise the situation of PWS; the same story from counsellor (or school) and parents, is often more easily accepted as being ‘ok'. This acceptance will play a major role in if, how, when and where this human sexuality is expressed. I personally think there is a need for honest, uncomplicated sex education that is two-way. In other words, listening to the child/teen/adult's concerns and questions, as well as giving the educational side of things. Softening the blow is always good, but remember that people with PWS are not dumb, they are quite astute and frequently need to hear the full, detailed story!
Deep water. Yes, often it is, and I know I've written about this in a previous blog and I've been through the whole "I want to have sex" drama with my own daughter, but before I proceed, I just want to reiterate that this is a personal issue for each and every person, and for each and every family.
My daughter decided a couple of years ago when she was in her mid-twenties, that she and her long-standing boyfriend (and that's another story... I mean, she insists he's her boyfriend, yet she hardly ever bothers to see him unless there's a present in the offing) were going to have sex. This was nothing to do with babies that I could see, it was all about sex. Great, I thought. Just what I need, and in spite of the numerous blocks I tried to put in the way (visit to the doctor for sex health education, visit to the sex clinic, sex talk from me, sex talk from her residential manager), she was determined. To cut a long story short, we (her parents, and her residential staff) agreed it would be ok. So armed with a box of condoms ("will this be enough, Mum?") she and her boyfriend had sex.
When I next spoke to her, I asked her how it all went (well... you know our kids, they're always willing to share!). "Did you sleep together?" I asked, and in all innocence she replied, "No, he went home!" I tried again, "Did you and .. make love?" Her reply, "What's that?" It was at that point, I remembered her concrete thinking. "Did you have sex?" I asked. "Oh! Yes," she said, "twice, but the second time it wouldn't work."
It was all I could do to contain myself.
"We're not going to do it any more, we'll wait til we get married," was her final comment on the subject.
It led me to think about all of this. Somehow, all she was wanting to do was to be like the next person. She was acting out a fantasy. A curious situation, I admit, but she was behaving like a teenager wanting to explore her own sexuality. She was well out of her teens, but her knowledge about sex was still exploratory and, as far as she was concerned, needed to be tested.
As I said before, everyone's different and I've heard a lot of stories from parents about this subject, but I think the hardest part is the very first time you hear, "Why can't I have babies?"
Here are my thoughts:
It's true that females with PWS are unlikely to regularly menstruate unless they have sex hormone therapy and this is now a recommended treatment because it helps strengthen the bones, help prevent kyphosis (forward curvature of the spine) and helps make the person feel more like their peers; more 'normal'. Many girls will still menstruate, even lightly and irregularly, and if sexually active, do run a risk of pregnancy, but a large percentage of our PWS population will not have sex hormone treatment, will not menstruate, may never be sexually active and still desperately want their own babies.
Girls with PWS love babies - so do the boys, but the girls have a strong nurturing streak as often seen with their attraction to anyone's baby! Many also have large collections of dolls and act out their fantasies. This may extend to fantasies about boyfriends, and I mean really strong fantasies that they insist on being true! This calls for patience and understanding. If it gets more unrealistic and even confrontational, then the collaboration of parents with professionals, school teachers, counsellors, and the wider family (particularly people whom the child admires and sees as an 'expert') to help unravel the fantasy even to the point of explaining, for example, that "although, because of Prader-Willi Syndrome, your body works a little differently from others, so that you may never have children - and many, many women in the world don't, or can't - but your sister (cousin, friend, etc) may still let you help care for her baby. You may well become an aunty to lots of children!" If the child hears the same story from all, then they generally accept that what they are hearing is correct. When the child is ready to understand more about their condition, you can either do this slowly, bit by bit, yourself, or seek professional help.
The collaboration of parents with professionals helps legitimise the situation of PWS; the same story from counsellor (or school) and parents, is often more easily accepted as being ‘ok'. This acceptance will play a major role in if, how, when and where this human sexuality is expressed. I personally think there is a need for honest, uncomplicated sex education that is two-way. In other words, listening to the child/teen/adult's concerns and questions, as well as giving the educational side of things. Softening the blow is always good, but remember that people with PWS are not dumb, they are quite astute and frequently need to hear the full, detailed story!
Deep water. Yes, often it is, and I know I've written about this in a previous blog and I've been through the whole "I want to have sex" drama with my own daughter, but before I proceed, I just want to reiterate that this is a personal issue for each and every person, and for each and every family.
My daughter decided a couple of years ago when she was in her mid-twenties, that she and her long-standing boyfriend (and that's another story... I mean, she insists he's her boyfriend, yet she hardly ever bothers to see him unless there's a present in the offing) were going to have sex. This was nothing to do with babies that I could see, it was all about sex. Great, I thought. Just what I need, and in spite of the numerous blocks I tried to put in the way (visit to the doctor for sex health education, visit to the sex clinic, sex talk from me, sex talk from her residential manager), she was determined. To cut a long story short, we (her parents, and her residential staff) agreed it would be ok. So armed with a box of condoms ("will this be enough, Mum?") she and her boyfriend had sex.
When I next spoke to her, I asked her how it all went (well... you know our kids, they're always willing to share!). "Did you sleep together?" I asked, and in all innocence she replied, "No, he went home!" I tried again, "Did you and .. make love?" Her reply, "What's that?" It was at that point, I remembered her concrete thinking. "Did you have sex?" I asked. "Oh! Yes," she said, "twice, but the second time it wouldn't work."
It was all I could do to contain myself.
"We're not going to do it any more, we'll wait til we get married," was her final comment on the subject.
It led me to think about all of this. Somehow, all she was wanting to do was to be like the next person. She was acting out a fantasy. A curious situation, I admit, but she was behaving like a teenager wanting to explore her own sexuality. She was well out of her teens, but her knowledge about sex was still exploratory and, as far as she was concerned, needed to be tested.
As I said before, everyone's different and I've heard a lot of stories from parents about this subject, but I think the hardest part is the very first time you hear, "Why can't I have babies?"
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