An information and support resource for families with children, teens and young adults who have a DSD
Talking: explaining, coaching, clarifying, etc…
Sharing information with your child will open the door to plenty more conversations that allow you as the parent to further clarify and explain, and sometimes also to coach a child in articulating him or herself to deal with specific questions.
Sometimes the best conversations happen in the car...So on a recent morning Sandeep (my 9 year old son who has Gonadal Dysgenesis) told me that Kermit (his current fave stuffed animal) has a DSD, too. And (like Sandeep) Kermit also started out with people thinking he was a girl, and then he told everyone he is a boy. So, I asked "how does Kermit feel about that?" Sandeep says "Happy!" and a few seconds later..."and a little scared"...So I asked him what Kermit is scared of, and first Sandeep says "I don't know." So, I say "Will you ask Kermit if he'll tell us?" So he whispers to Kermit, and Kermit whispers to him...and he says Kermit is afraid that people will be mean to him if they know he looks different...
I asked Sandeep what he thought Kermit could say if someone was mean, and he was stumped - just didn't even have one idea. So, I offered him these thoughts: "Well, maybe if a kid says "what's wrong with you? Why do you look different?” Kermit could say..."Nothing’s wrong with me. Everyone is different!" Or if a child remembered when we thought Kermit was a girl, and said "You're really a girl!” Kermit could say “Stop being mean. I'm the one who knows who I am, and I am a boy." We also told Kermit that it can be hard to talk with kids when they are saying mean things, or asking personal questions, and that he doesn't have to answer at all. He can ask for help from a grown-up. We also told Kermit that we would be there for him to give him a hug if he felt bad.
Love that Sandeep is still young enough to play this with me, and so grateful that he knows he can talk with me, even if it's Kermit doing the talking.
And sometimes we need some basic coaching ourselves!
Only yesterday I was asked for the first time ever by a friend whether my daughter who is nearly 12 ‘already has her periods?’. I have known forever she will not have periods, yet I was stunned by that simple question all the same..
So I just said: ‘No’.
Should I have said ‘well actually, she is never going to have her period because she was born without a womb’ …and happily continue to explain how she has partial androgen insensitivity syndrome…?
What will it be like for my daughter when friends start asking her and how can I best support her? I don’t want her to lie about never having periods.
How to maintain her privacy and her right to decide what others may know?
How to get across that there are many reasons why girls don’t get periods.
How to help her feel confident and happy about her body that simply developed in a different way than some of the other girls in her class?
For now, whenever asked, I will just say ‘No’ (however kind the question is intended)…until I figured it out and can project a clear answer with confidence.