Sarah Ford | September 9, 2014
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.

Get Resources and Insights Straight To Your Inbox
Explore More Articles
Make the Holidays More Meaningful: Engage Your Team with Employee Giving Technology
The holiday season is a time for connection, gratitude, and giving back. For employers, it’s also an ideal moment to strengthen workplace culture, deepen employee…
Read ArticleLaunch a Turnkey Holiday Giving Campaign
Sign up by October 3, 2025 to launch your employee donation site in time for the holidays! Give employees a simple, meaningful way to make…
Read ArticleData Processor & Customer Service Representative, Charitable Funds Management Solutions
Reporting Structure: Director, CFMS Term: October 2025 to February 2026 Schedule: Full-Time; Monday-Friday up to 37.5 hours per week. Rate: $20 per hour Overview of…
Read ArticleGet Resources and Insights Straight To Your Inbox
Receive our monthly/bi-monthly newsletter filled with information about causes, nonprofit impact, and topics important for corporate social responsibility and employee engagement professionals, including disaster response, workplace giving, matching gifts, employee assistance funds, volunteering, scholarship award program management, grantmaking, and other philanthropic initiatives.
