An information and support resource for families with children, teens and young adults who have a DSD
I would like to introduce myself, I am A's adoptive mother. A is a sweet boy who is very social, loving and hard-playing. He is fun and intelligent and most of all makes me feel like smiling every time I think about him. A is 4 years old and challenges me in many ways, I think he is too clever for his own good, or perhaps it is my own good I am more worried about!
Things I had to think about before adopting A were mainly adoption issues such as acknowledging that differences are a good thing, that we can celebrate good things but we must not ignore the painful things. Adoption is a blessing as well as a burden for parents and children alike: there is a catch 22 in adoption. 'If a child is adopted, thus chosen, first he must be rejected or given away.' If we ignore the second part, we ignore half of the child's story. I see a lot of parallels in adoption stories and DSD stories. We cannot keep something quiet or ignore it and hope it goes away if it is fundamental to our character development. We have to face it square on, however uncomfortable it can be.
So, I hope if you decide to read my A's Story, you will be refreshed by my openness about sex, trust and development and not offended.
Knowledge is power, 1 July 2011
Giving A Control, 10 September 2011
What does a willy look like? , February 2012
Will he look like a girl? , March 2012
What to say, what to do…. , April 2012
Swimming in Junior Infants , May 2012
The Fanny Story, November 2012
Please excuse the name of this title, but it really is the most appropriate summation of what you are going to read next. As you know, our son A is a boy with PAIS. He’s growing up in a family that is open about the facts of life. We are not ashamed of our bodies, but we believe in privacy and respecting each other’s’ need for it. So as you can probably imagine, A has seen each of his family members naked and as he’s no fool he knows he doesn’t resemble his sister or his dad ‘down there’. That said, A is not self-conscious. I don’t think 5 ¾ year olds are fully self- conscious. (The ¾ year is very important at his age…just ask A)
You may recall A’s story about swimming lessons… I suppose that without that experience and my being able to accept this stuff can happen and may not even turn out as badly as I think it will, this story would have gone another way altogether. I’m much less prone to panic; I figure that these things will happen, and I need to deal with them as best I can. Anyway, on to the little mix-up in our neighbour girl’s head….
A very good friend, Susan, came by for a cup of coffee yesterday and told me that A and her daughter, Nora, were playing the ‘if you show me yours, I’ll show you mine’ game. Which, A was of course happy enough to do. Afterwards, Susan reported that Nora said that ‘A has a fanny’. Now, being American, I wasn’t exactly sure what this word meant, except that here in Ireland it is not a very flattering way of referring to women. So, being me, I just fessed up and asked what exactly that meant. She kindly explained that meant ‘vagina’. I asked Susan what she said in reply to Nora’s announcement. Susan said, ‘you’re right, Nora, he does.’ Then she asked me, ‘What else could I say?’ And that is what got me thinking. What else could she have said? Well, her question set me back a bit so I allowed myself to let this soak in for a few days and gave her some non-committal reaction like ‘I don’t know’.
In the meantime, I asked myself a lot of questions beginning with the biggest one: HOW do I stop A from showing his genitals willy-nilly (sorry just had to pun that) while at the same time not embarrassing or humiliating him. Another question was how to explain that while he has atypical male external genitals, he does not have a fanny. Finally, as I always do, I looked down the years a bit to when Nora decides A is a mega-jerk and decides to throw it into his face after he insults her. (Which, bless them, boys and girls do to each other all the time. If I recall correctly, with boys the insult part is very much a part of the dating ritual much to the confusion and annoyance of us girls.)
This story may come back to you again in a few years when Nora finally decides to get back at A with this bomb-shell, but for now, I see no point in crossing that bridge. So my third worry is put on hold. As for getting A to stop being willy-nilly about his nakedness, I decided to tell him that Nora told her mom that she thought A has a girl’s bottom. (Americans often call it a crotch, but I’m not going to confuse issues by adding more vocabulary.) He got a cross look on his face and immediately said, ‘I hate Nora’. Then I said, ‘well, you know, she is only a little girl and doesn’t know everything about other people’s bodies, so she made a mistake. I have decided to tell her mum to let her know that you don’t have a fanny. I'm going to tell her that you have a willy but it’s not as noticeable as other boys’. He indignantly replied, ‘FINE!’ and ran off. Strangely enough, I really think he is fine with it. I also think that he may think twice about showing off to other kids.
So, now to the tricky part. I needed to talk to Susan without sounding upset (which I am), because the more ‘normal’ I make all of this sound, the more matter-of -factly she will take it. So, this morning, I got Nora’s mum in for another cup of coffee and said, ‘I’ve been thinking about what you told me the other day about fannies and I think we should just clarify that A doesn’t have a fanny. He has partly developed external male genitals and no internal female genitals. He has a willy but it looks like a clitoris because it’s tucked between his descended testes which aren’t fully fused together.’
She replied, ‘do you think I should talk to Nora about it?’ and I said I hoped she would, because it’s important that when they get older, she doesn’t have some misconstrued idea that A is a girl down there. She should just consider it a fact of life that everyone looks different down there, and that A just looks a bit more different than other boys. ‘
I am confident that Nora’s mum (and one of my closer friends) got the message and that she will pass it on to Nora.
Am I crying? No, but inside I feel like it, just a little for A’s future and the challenges he faces. On the other hand, I feel I am doing all I can to help him. Let’s hope the belief that secrets are more damaging than the truth is a good one, because I’m basing my decisions on how to handle these delicate issues completely on the theory that the truth will set us free.