Chapter 3 HOW TO TALK WITH OTHERS includes a longer discussion of how to talk with your child’s medical care provider. This is a short-form version of how to prepare.
Prepare your child in advance about what to expect. Tell him or her who will be at the appointment, what will happen at the appointment, and why you are taking him or her to the doctor. Ask your child whether he or she has any questions or concerns about the appointment. (Also see Chapter 2 YOUR CHILD’S DEVELOPMENT, AND HOW TO TALK WITH YOUR CHILD and Chapter 4 ANSWERS TO COMMON QUESTIONS for more details.)
Prepare a list of what you want to tell and ask your provider. When you make your list, on the paper some leave room under each item so you can take notes at the appointment.
Here is a short-form list of the questions discussed in Chapter 3 HOW TO TALK WITH OTHERS. You might want to draw from some of these questions when you make up your advance list.
Do you know my child’s exact diagnosis? If so, will you write it down for me and tell me where I can learn more about it? If not, can you tell me which diagnoses you are thinking about?
How can I get copies of all of my child’s medical chart and lab results?
(If a lot of people are coming to examine or look at your child, ask:) Who really needs to examine my child personally? Can we limit the number of people coming in and out?
Would you please give my name and number to other parents who have been through something similar, and ask them to call me? It’s okay if their children did not have the exact same condition. I just want to talk to other parents who have older children or adult children with DSDs. It will help me understand that I will get through this okay.
Would you please give me a referral to a psychologist, psychiatrist, and/or social worker who has experience dealing with gender issues and birth anomalies, so I can get someone experienced to help me with my mixed emotions? Ideally I would like to speak with someone who cares for adults with DSDs, so I can learn more about what happens as a child grows up with a DSD.
Is my child having any immediate medical problems? If so, what are they, and what are the treatment options? What is the danger of doing nothing right now?
Which gender assignment (boy or girl) do you think my child should be given? Which gender do you think my child is most likely to feel as he or she grows up? What are your reasons?
(If the doctors are offering genital surgeries designed to change the way your child’s genitals look, ask:) Why do you think my child may need to have his or her genitals changed? What evidence do you have this will help my child in the long run?
Can we wait until my child can make the decision about whether to have cosmetic genital surgeries?
How many of these particular surgeries have you done, and how many had positive outcomes and poor outcomes—both in terms of physical well-being and psychological well-being?
(If your doctor wants to introduce an optional hormone treatment, ask:) Do we need to do this hormone treatment now? Can we wait until my child can decide whether this is the right choice for him or her? What are the risks and proven benefits for doing this now versus later?
Can you introduce me to someone with a similar condition who has been treated the way you recommend, and someone with a similar condition who was treated with an alternative?
(If you are feeling overwhelmed and stressed, ask:) Can you help me get professional mental health support? I am feeling overwhelmed and I think I need help.
(If you are feeling strong and able to help others:) Would you please give my name to other parents in your practice who might need someone to talk to? It does not matter if their children have exactly what mine does, I just want to be supportive of parents in similar situations.