Everybody is Different – How to Tell Your Child About Prader Willi Syndrome
Once you child is a few years old these can be the trickiest questions on a parent’s mind. If I tell them too early, will they let PWS define them? If I tell them too late, will they get frustrated with some of their challenges … will they hear about it from someone else? PWS is pretty complicated, how do I explain it to my child? How do I tell my other children?
Below is how we told our son, Dante. It was pretty simple and worked out pretty well. There are a ton of ways to manage this effectively and I’d love to hear what worked for you so please comment on this post. Here’s our story …
We started early. From the beginning we have had numerous discussions with Dante (7 with PWS) and Denzel (5) about the fact that everybody is different. Daddy shaves, mommy wears make-up, Denzel likes soccer and Dante likes boxing. We never highlighted one option as better than the others, we just consistently highlighted the fact that everybody is different. Simple.
We didn’t pick a specific time to tell the boys, we just went about our lives and waited for an opportunity. One day we were at home in our living room and Denzel complained about taking his inhaler. The time had arrived. Here’s how the conversation went:
Daddy – “Denzel, do you know why you take your inhaler?”
Denzel – “No”
Daddy – “You take your inhaler because you have Asthma and it helps you breath. Remember Everybody is Different.”
Daddy – “Dante, do you know why you take your needle?”
Dante – “No”
Mommy – “You take your needle because you have Prader-Willi Syndrome and it helps you get strong. Remember Everybody is Different”
Denzel – “Mommy, what do you have?”
Mommy – “I have Carpal Tunnel Syndrome”
Dante – “Daddy what do you have?
Daddy – “I have Tendinitis. Remember Everybody is Different.”
Daddy – “Do you guys know anyone else who has Asthma?”
Dante/Denzel – “No”
Daddy – “Your uncle has asthma.”
Mommy – “Do you know anyone else who has Prader-Willi Syndrome?”
Denzel – “Yes! Jenna, Chloe and Kloe”
And that was that. Pretty simple looking back, and nothing to worry about. The key for us was starting early and using consistent terminology. Now Dante and Denzel understand that Dante has PWS, but it really isn’t a big deal because Everybody is Different.