Everybody is Different – How to Tell Your Child About Prader Willi Syndrome
How do I tell my child they have Prader-Willi Syndrome? When do I tell my child they have Prader-Willi Syndrome? What do I say?
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.
Madelyn Says:
I thought this was a really pretty cool approach. I like that u didn’t beat into the topic and u kept it as everyone is different. Ur nit lying or keeping anything from them at all. I have a 7 month old and with pws and I have a non pws 8 year old. My daughter jada is on oxygen machine at night and my so. Has asked me. I just tell him that jada just needs extra help breathing just like he needed extra help riding his bike etc… We all need extra help in different areas in life. All in all same concept and it has worked. My non pws son now does the feeding tube alone he knows all the steps on his own. He turns in his sisters oxygen tank etc… Honestly I think it’s a beautiful bond they are already having. I feel blessed. Thanks for sharing ur story I think I too will use this approach with my nieces and nephew as u did! It was awesome!!
Posted on November 16th, 2011 at 5:51 pm
Claudia Says:
I think this is really a great topic, but I think is not about how to explain it another child, suddenly is for adults too. We have two daughters 19 and 14 (pws). Sometimes is more difficult to explain this condition with adults.
Everyone is different, but the most important is anyone is less.
Thanks for sharing your ideas and experiences.
Posted on November 22nd, 2011 at 6:05 pm
Remigio Obias Says:
Yes , what you have done to explain to your kids what they have and learn to accept it, is one of the best ways to treat conditions that will need the support of the patients themselves. if at an early age you were able to educate them of their conditions there will be less hesitations from the patients part to accept any form of treatment or rehabilitation process that will help improve their way of life. This goes as a reminder to parents who are unaware of the condition or they aware of it but won’t accept it, those who tend to pamper their kids and not explain to them what the condition is, they will be the people , parents and child who will find it hard to handle the situation in the future. Education or knowledge of the condition from both,the guardians and the patients , is the best treatment for any medical conditions that we will be encountering. Find the the courage from the family in the movie ” Lorenzo’s Oil” , the family represented there will be a good example for us in educating ourselves and others of the problems/ conditions at hand.
Posted on January 12th, 2012 at 7:14 pm