An information and support resource for families with children, teens and young adults who have a DSD
Stories, experiences, etc. from across dsdfamilies.org
Kindly note, we are listing stories by age... from sharing with little ones to teens.
On dsdfamilies.org, there is a small section among the Experiences and Practical advice, email from AIS/DSD parent email group on 'talking with your child'. You can find it
The first one of those posts is a really touching tale capturing the first time a mum shares some information with her young child. I print it below in full. The mum who wrote this also writes 'The Lady Lump Diaries', which you can find here:
The mother of a three year old CAIS girl writes this messages to the group, titled 'First Steps':
As I picked my daughter up to take her back to bed for the 11th time last night she looked at me and said "Mom, I'm always in your heart." I was really touched by this declaration, though I wasn't quite sure who had told her this fact. I said "Yes you are in my heart, and I'm always in yours". "Uh-huh" she nodded. To take advantage of a good teaching moment I quickly said "Jesus lives in your heart too." "Yes," she said "and he's going to go down... in my belly... and he's going to come out a baby." She said this very animatedly, showing how her tummy would get bigger and bigger. "Well," I said, stalling. I wasn't prepared for this at all. Three? Three was too young to be thinking about having babies.
"Well," I said, starting again. "No, baby. Not everyone has babies in their tummies." I started to pull on her pyjamas. "There are a lot of little babies out there who need mommies, and you're going to be able to adopt one someday." "Oh," she said with her wide blue eyes. "Can I get a little kitty too?" I hesitated. "Sure... a kitty... We can get one of those too."
At 10:45pm that night the world shifted for me. Our journey to understanding began when I least expected it. I looked in a little bit later that night. Her angelic face was smooth and innocent. I wished I could protect her forever. It was ironic to feel how moved I was, knowing how unaware she was. I hope I can keep it that simple... at least for now. Isn't that the point to all of these moments? We worry. I'll worry.... So she doesn't have to. And in the meantime... I'll pray for the courage to choose the right path that will be easiest for her, and pray for the strength to go back when I've made a wrong turn. I'll pray to be her pillar, so she can grow so much stronger than I've ever dreamed of becoming.
Mentioning for the first time that not all mums grow babies in their tummy, and as such opening the door for your child to learn more, can come as a great relief, a big hurdle taken, as described by a mother below:
That of course is not the end of the story. I did not know any other affected parents and often felt deeply lonely; she was our first child so I did not know what 'age-appropriate language' meant and I did not understand that it is totally 'normal' for girls to play with boys' toys; I did not identify myself with any of the support group websites I visited; and I was desperate, desperate to read about how other parents were dealing with all these issues.
For me the tide turned about 4 years after her birth, on the day that I explained to her while she was playing with her dollies, totally unprepared and totally unexpectedly, that not every mummy grows babies in their tummy, and that some adopt. Being able to articulate this in in a very spontaneous and natural way made me realise: Yes, I can.
Children books, listed here:
All these books can be helpful to start talking with your child about difference, introduce the concept of adoption, etc.
The first one listed (Pipo and Pepo, the two explorers) is the only one specifically written about DSD, by a young Spanish woman with CAIS. It tells the story of the 6 year old Marta who discovers she has two explorers [gonads] inside her.
Laurie has been writing about raising her son in a collection of stories called 'A's Story', which you can find
Her conversations with A are a very good indicator of the level of info/language a child is able to understand, take in.
Laurie also wrote about the gender re-assignment process, in a piece called 'Survey', which you can find in the 'Friends and Society' section, here:
...and about adopting a child with a DSD, which you can find on the Adoption pages, here:
Ellie wrote a paper which contains some examples of talking with one's child (incl. the experience of having to tell one affected and one non-affected girl where periods come from). The paper itself was written for doctors and if you don't mind skipping the 'hints' to them you can find it
Otherwise we have copied and pasted a relevant part:
For years I felt like this huge responsibility was put on my shoulders but that there was nowhere for me to help me learn how to deal with it. As Linda, a mum in Canada put it, a few months after her 8 year old daughter was diagnosed with CAIS: 'I look at this as just getting a new job, like a big job with a lot of responsibility, but no one is training me, and as I am self-sufficient, I am doing all of the research and training on my own, but I need some support, like a manual or something. I am just feeling a little lost and I can't quit this job, or look for a new one: this is it, my life job, to take care of my girl.'
Just over a year ago, I sat down with my daughter and gave her quite a bit of information about her condition: that she would not grow babies in her tummy, and that she would not be 'bleeding'. We spoke about her vagina (where it was – she has a urogenital sinus), about her clitoris (why it is a bit larger) and about taking medication. Then we started to talk about adoption, and about friends who did not have children...
Once all these things were out in the open, I was no longer a 'keeper of secrets', but I could start mothering my child with AIS in a more pro-active way, empower her to accept herself and learn about herself and her different development.
And my daughter responded to this in a natural way... she feels comfortable asking questions about pretty much anything. A few months after our chat, she told me that a friend in her class had got a book about how the body develops [at puberty], and could she get one too. I told her honestly that for a long time I had been wondering if I should get a book like that, but that I was always worried that she might think she would develop like the girls in the book. And I added that now that she knows that she will develop differently, of course, we can go to the bookshop – and indeed, the next day after school we went to the shop together and got the book.
Giving her access to such a book is one way of helping her understand her difference. And what I try to do is demystify everything that has to do with 'typical' development, and as such build up her confidence. So, yes, she is allowed to do 'scientific experiments' like adding water to tampons and pads of various sizes and strengths. When we found ourselves in the supermarket needing to buy pads, I let her choose whilst answering her questions about why there are so many varieties. And when she came to see me with one of her best friends, asking me –whilst I was preparing dinner- whether I could explain where periods come from, I did not flinch and explained scenarios for girls who do have periods and those who don't. I was very proud of myself afterwards.
Last week, as we were getting ready for school, she saw me taking a contraceptive pill and she asked me 'mum is that to stop you having babies?' I said: yes, sweetheart and I thought great, I can tell her a bit about hormones... but then I got stuck... do I call them female hormones??.. And I got my oestrogen and progesterone confused...so in the end I just said that it was a special hormone that stopped sperm getting to the egg. But I wish I had practiced this with someone, like a role-play to talk about hormones.
I used to be afraid that if I didn't have all the answers to all her questions ready she might worry that something was terribly wrong. Now though, if she asks me an important question that I really would not know how best to answer, I can say to her: 'That is a very good question, but you know, I am not so sure how best to answer that or what the answer is. Would it be OK for you if I think about it and perhaps we can talk about it tonight when I take you to bed or one of the next days'.
As parents we seek to combine a pro-active approach to building up her knowledge with a re-active approach as and when she asks us questions or if the opportunity for giving her further info arises. Our approach as parents would perhaps not suit every family, but we feel it works for our daughter and for us.
Turning a corner – or about the night I told my daughter she could not grow babies in her tummy
A collection of emails about sharing information with your child, including the experience of telling a daughter, age 8 ¾, that she will not grow babies in her tummy.
- Charmian Quigley is a wonderful paediatric endocrinologist, as well as medical advisor to the US AIS/DSD parent email group. She is very good at 'normalising' this condition by using simple, descriptive language. Skip through to slide nr 20 in the presentation below for some great stuff on AIS, chromosomes and gonads.
Below is another short section from the Experiences and Practical advice, email from AIS/DSD parent email group on 'talking with your child'. You can find it
So, in terms of the gonads and XY...it has been pretty recent...but came out a natural extension of earlier conversations about the ways her body is different and similar to girls who don't have a DSD...she understands chromosomes VERY basically as a part of "the map" that gives our body guidance about how to grow...and we have previously talked with her about hormones (talked about different kinds of "juices" when she was littler...and that we all - boys and girls - have some of each kind of juice "red" and "purple" that helps us grow...and that she and some other girls with DSDs have more of a certain kind of juice ("purple") than many girls do...). I got some great advice from a doctor back a few years that we could approach it this way... These days she knows the words testosterone and estrogen.
More recently we talked about how her map ("XY chromosomes") has a path that can lead to someone being a boy, but it also has a path that many girls with DSDs go on that leads to being a girl. The gonads we explained as things that can become ovaries or testicles...and in many girls with DSDs they don't develop fully into either...so they can be helpful in growing, but at some point they can stop being helpful, and we will need to take them out.
She is a bit worried about "needing to take them out" since it will mean a surgery. She also wanted reassurance that she would not "turn into a boy". So nice to be able to reassure her of that in this day and age, and with the excellent care we are receiving.
It's A LOT for her to take in...and I think that she will understand it at ever deepening levels as time goes by...
And finally, a lovely story about introducing and 'normalising' dilation – posted on the 'Personal Stories' pages
The Pink Stick - introducing dilation to my teen girl
We are grateful to the mother who shared with us this story about introducing and 'normalising' dilation. Parents will recognise strategies of bringing up difficult subjects, reminding kids pro-actively of difficult conversations, etc.
Connecting dilation with female masturbation and pleasure is an empowering message that helps girls understand from early on that there is much more to sex than 'just' entry-sex. Some parents might wonder about the age at which one starts to talk about this with kids...Take it from us: they know much more than you think.
And the more comfortable and relaxed you are to talk about relationships, and intimacy and pleasure, the easier it will be for them to come to you with questions.