An information and support resource for families with children, teens and young adults who have a DSD
There are all kinds of stories written for children to help parents gently introduce the realities of life to our kids: Books like 'The Runaway Bunny' by Margaret Wise Brown or the 'Very Hungry Caterpillar' by Eric Carle. However, stories about DSDs are pretty hard to come by. We have listed a few here that are great because they celebrate the differences, talk about adoption, or refer directly to different types of DSD. If you have a young child, perhaps you may like to have a few of these in your collection. You may find that by knowing these stories, your child will be able to understand and make links to his or her own story, as you tell it sometime down the road.
Reading these books can also help you choose the time to discuss sensitive issues. A lot of parents tell about how when they were driving the kids to school and one of them piped up with, 'where do babies come from?' or 'why do boys have pee-pees and not girls?' If you want a controlled environment for talking with your kids, you can start building on what you are reading to them. And if they do ask relevant questions at awkward times, at least you can fall back on the 'remember the book about being different?' and chat from there...
Yes you can
(new Winter 2014-2015)
Books for kids [PDF]
All parents, whether their children have a DSD or not, root for their kids to grow up being confident and resilient. These books, selected by a group of teachers in the US, feature some great girl characters, and are a nice way to help kids see the best in themselves. More suggestions on: www.mariaselke.com and www.teachmentortexts.com
Books about love
If any or all of the information on this website is too much to take in, then let the following be the most important take-home message:
The most valuable thing you can do, at any time, for your baby and child is to remind them that you love them very much, and always will.
A psychologist, Lut Celie, describes this as follows in her new book ‘Anders kijken en luisteren naar jongeren’ (in Dutch language only)
‘Children need bonding, at any age. Bonding with your child means you often hold them closely; you play with them, listen to them, and make time for them.
That way you make them feel that you really love them and always will’
Some lovely books you could use are:
‘My mum’ or ‘My dad’ – two books by Anthony Browne
Guess how much I love you - by Sam McBratney
I forgot to say I love you – by Miriam Moss
Pipo and Pepo, two tiny explorers ( English Version – please note this is a big file; downloading it takes about 40 sec )
We are DELIGHTED to present to you the English translation of this beautiful story written by a young woman with CAIS from the Spanish AIS support group GRAPSIA.
She wrote this story to help parents discuss AIS with their child (as well as to demystify doctors and hospitals – so it can be read to children with other DSD conditions too). She recounts how she was inspired by another affected adult who said, during one of their regular debates on 'how to tell' and 'what to tell', that 'La verdad tiene que estar desde el principio ahi, en forma de cuento' (The truth should be there from the very beginning, in the form of a story). The story is truly delightful, both in words and images:
Pipo and Pepo are two little explorers [gonads/testes], who are just a bit smaller than a ping pong ball, and love 'travelling', and sliding up and down. During one of their far flung adventures the little explorers get stuck and try to escape. While they are hammering away at creating an escape route they hear the voice of a little girl saying 'Mummy, daddy, my tummy is aching so much...'. The little girl, Marta is seen by a lovely doctor who explains things to her astonished parents and says that the best thing would be for him to help the explorers get back to their little cabin inside the girl's tummy. He reassures the parents that this is important because Pipo and Pepe carry with them important tools [hormones] which will help the girl grow up healthy and happy. The author describes the gentleness of the girl's parents as they prepare their daughter for an operation [hernia repair], and the childly innocence of Marta as she discovers her stitches. Soon afterwards, reassured that she can play and jump and cycle, Marta joins her friends and tells them about the operation. She also tells them about the two little explorers who now live happily in her tummy, but how later she may set them free. But first she might like to join them on their adventures because she too has the spirit of an explorer!
The story's author feels this story is aimed at children between 5 and 8 years old, depending on the maturity of the child, and when parents are ready to explain.
The original Spanish version can be found on the Grapsia website.
Look at Me! A Book about Differences
, by Allia Zobel-Nolan and Michael Terry
A nice book for very little kids (1-3 years): 'We are all different, it’s true. We come in all sizes. We're full of surprises. We love being ourselves. How about you?
I Don't Have Your Eyes
I Don't Have Your Eyes is a book on adoption recommended by the adoptive mum of a DSD boy:
Excerpt: I don't have your eyes... but I have your way of looking at things. I don't have your ears.... But I have your way of hearing those in need. I don't have your nose... but I have your way of stopping and smelling the flowers.... I don't have your height ... but I have your pride which makes me stand tall...
Frog is Frog
Frog learns the importance of being himself!
Giraffes can't dance
Gerald was not a good dancer. Every year he dreaded the great Jungle Dance. But what Gerald discovers one beautiful moonlit night is that when we're different sometimes all we need is a different song to dance to....
The Worry Website
Jacqueline Wilson excels in writing about children 'with difference'; as far as we know she has not written about DSD, but many of her books give parents a good opportunity to discuss the difference in other children and other families. Her books help our kids put their own challenges into perspective.
'Lots of the kids in Mr Speed's class have something to worry about. From a new stepmother to coping with Maths, everyone has their own private concerns and it's sometimes difficult to discuss them - even when you need advice. So Mr Speed sets up the Worry Website on the classroom computer. Anybody in the class can anonymously enter their worry and anyone else can type in advice to help out.'
Of Thee I sing - A Letter to My Daughters
This beautiful book by Barack Obama is about the potential within each of us to pursue our dreams and forge our own paths. It celebrates diversity like no other.
"Have I told you that America is made up of people of every kind?" How I wish he'd written that the world is made up of people of every kind.
(From a review for The Observer, November 2010, Anthony Browne, UK 2009-2011 Children's Laureate)
It's ok to be Different
"My books talk about love and kindness and are sometimes silly," Todd Parr.
Todd Parr writes books about acceptance, in very brightly coloured pages with a lot of fun words and ways of saying things. You will cry when you read 'It's ok to be different' because it is just perfect for our situation. In fact, just about any book in his collection will appeal to parents of children from 2 to 7 years old (the ages where kids still let mom and dad read to them!)
Katy No Pocket
Katy No Pocket. A children's book, first published decades before AIS was understood, which many parents find helpful when discussing the impact of AIS with their affected daughters.
Tell Me Again About the Night I Was Born
Tel Me Again About the Night I was Born. A lovely book about adoption, putting across beautifully that one becomes a family, a mother, a father, a daughter, a son, through the act of loving and caring."
Hair in Funny Places
Hair in Funny Places by Babette Cole.
A parent comments:'As a mother of a PAIS child, I have never got a book in our house that would describe what 'normal' physical development is like. I was afraid that if my daughter saw it, she would take for granted that this is what would happen to her. I am not sure anymore if that is the right approach. Should she know what is 'normal' to better understand why she is 'different'?
However, I can really imagine how Hair in Funny Places will allow my child to understand more clearly how her body will develop differently (the book covers puberty for both boys and girls, but until a parent of a boy can confirm, I would only recommend it for girls). The book introduces in quite an amusing and certainly very accessible way the effect 'Mr and Mrs Hormone' have on the young body. I think the 'objectification' of the hormones makes it also easier to understand how a 'replacement object' like medicines can assist our children to develop. The fact that the book describes 'normal development' as also a bit yukkie sometimes makes a welcome change.'