• Now may be a time for further information on how bodies work, and how bodies develop. You can teach them about hereditability of family features and introduce concepts such as genes.
  • Introduce puberty and talk about changes to the body. Let them know that changes take place all through life too. Borrow some children’s books and read up about typical puberty so you can talk about it. You can visit dsdteens.org to help you understand how your child’s body puberty may be different.
  • When reading up on ‘typical’ puberty, introduce the idea that we can think about the things we read and then work out our own thoughts on how right or wrong the writer may be.
  • Don’t shy away from talking about typical puberty issues as these need to be ‘normalised’ and demystified. Let girls do water experiments with tampons. Be open to both girls and boys about sensitivity of genitals and masturbation. Boys may need some help to understand how their penis could look different from that of their friends and thus help to feel good about that. They need to learn early on how the body continues to grow and how hormones play a key part in all the changes that are happening. Try talking about their body development – then say how typical development can differ in lots of ways. This breaks down the common pattern of typical vs different. Try the words - some people (like you) and other people.
  • Reinforce how important it is to feel good in one’s skin, be happy with who you are and who you can become; everyone is different and everyone has their own likes and dislikes. Jacqueline Wilson (an author of children’s books) excels at writing about facing challenges and coming out on top.
  • Share information about the range of biological make-up before your child has sex education in school. This will help them understand their own reality rather than having to undo what someone else teaches about most kids’ development – but incorrectly calls it everyone’s. Remind them that text books are usually not detailed enough to give everyone’s experience.
  • Help your child to deal with all the differences around them by pointing these out. Talk to your child about these differences, rather than ‘protecting’ them from them. Some parents will approach and ask the school to adapt the sex education programme. Others will say to their child ‘it is very complicated for the teachers to explain all the differences between people and this will be different for you.'
  • Increase their independence and discuss autonomy in healthcare (eg making decisions). They need to fully understand why they go to the doctor and the sort of things the doctor might ask. Reassure them it is ok to say ‘I don’t want to do this’ and encourage them to ask questions, not to be afraid. We want them to grow up as independent young people. Teach them about ‘informed assent’. This means that all children should understand what happens in clinic and give permission before anything is done. Start with small things e.g. when you go to the GP or the consultant, let them sit in the main chair between the doctor and the person who has taken them – it says ‘this is about you’. Involve them in the discussion as much as you can and ask afterwards if they have any questions. Don’t stop talking about healthcare issues or going to the hospital until the next appointment. From time to time you can revisit this by saying things like - ‘do you remember that the doctor said’ or ‘the doctor says we need lots of Vitamin D for healthy bones’.
  • Talk about privacy, and about how sometimes parents can share information that you can talk freely about within the family, but that is also private, meaning that you don’t share it with your friends. You can always add that as they grow up and decide they want to tell their friends then mum/dad can help them think about easy ways to explain things. And if a child decides to tell something to a friend, you can step in and add ‘for some kids it is this way and for other kids it is different – we are all different!’.
  • Repeat repeat repeat information. Kids only take in a little bit at a time and need to hear the same messages again and again. By hearing it often it gradually becomes familiar and thus part of them, not alien and strange.
  • If you haven’t attended get togethers with other families whose children have similar conditions, do try to do so know. Ask your team about them hosting family days or about introducing you to other families.