Everyone has different styles and tact that work for individuals or different situations therefore, what I suggest is not mandatory more an advisory note. When it comes to helping them deal with it one of the things I would suggest is age appropriate honesty. I feel that by telling them bits at various stages is better than hiding it in the long run as it gives time for pieces of information to be digested in almost bite sized chunks as apposed to one huge dramatic hit. When the girls grow up if things have been kept from them then trust and everything they have known will feel like a lie. At the end of the day milestones such as puberty and medications needed, hospital appointments attended will begin raising questions and if you haven’t already been honest then pieces of a puzzle will begin to be pieced together, not to mention the fact that as transitioning into adult the appointment will eventually focus on the facts from the individual so they will become more aware.
I feel that if they have the knowledge they are more prepared to ask questions as the trust basis is there and this in terms helps them process the information as they go along and in turn allows them to be able to then tackle the issues they come across. For example understanding what the difficulties in learning will allow them to ask for the help they require as they will not feel ashamed or unsure that that might be needed.
My mum used to send me with turner syndrome information book for my teachers each year to read to allow them to best help me throughout my time in school by talking about obstacles I may come across. As I grew older I was able to speak for myself openly as it had never been something i had been ashamed of.
The most major way to help is support, my mum and dad used to make hospital appointments a family day out therefore, I had the good memories with the necessity. They spoke to me each time allowing me to be part of whether I was a medical teaching or trial, they were encouraging when I began to get older helping teach me to help give my own medications. Whenever I had off days they were there and answered what I asked them in the best way at the time. They had a family that was local they supported and kept contact so that I had someone else like me around. They have always encouraged me to do everything within my ability and never treated me like I couldn’t do anything therefore, I tried as any other person would.