Talking to Your Kids About Their Diagnosis

How to tell your child they have a particular diagnosis, whether that’s Marfan syndrome, Loeys-Dietz syndrome, autism, or something else, is a question I get frequently…multiple times while writing this post, in fact! Do you tell them in pieces, or all at once? Wait till they ask? Till they’re older? Is their diagnosis part of them, or something that they fight against?

We don’t want Marfan, or autism, to be a big deal in our house. Making them into a big deal makes them seem more scary. So, we’ve never had one Big Conversation. Instead, we’ve just talked about Marfan and autism around the house since the boys were babies, in age-appropriate ways.

For example, J knows he takes medicine. We tell him “you have something called Marfan syndrome, just like Mommy! It makes you tall and stretchy! It also can make your heart and lungs more tired, so you take medicine every day to make them stronger.” Since age 3, J’s been able to identify all his medicines by which body system they’re for, and which time of day he takes them, and he reminds me if I forget one. It’s a little part of his care that he takes pride in.

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