Tip of the week: A holiday letter to family: Trust my lead

November 22, 2019

A holiday letter to my extended family:

You never heard the words Prader-Willi syndrome until my child was born. Neither did I. It means the world to me that you love her, and I know that you want to show her love in the same way that you show all of the other kids. But my kid isn’t like the other kids in some very important ways. An extra cookie tucked into the hand of my sister’s son or my cousin’s daughter is just a special treat on a special day. An extra cookie for my child means anxiety and confusion and permission to veer from a carefully agreed-upon menu. “Just this once” doesn’t apply to my child because the syndrome that they live with doesn’t allow them to stop at one. Planning for a special day starts weeks ahead of time, and my planning is the only thing that allows us to be here. And we really want to be here.

I ask that you stay within limits because they work. Limits on food, numbers of gifts, time that we will stay are all put in place so my child will have a good experience and so you will see my child at their very best. PWS is a medical condition, and there are tried and true practices that help them stay successful. The rules that I ask you to follow may seem unreasonable, but I promise you that I do this because I love my child and want them to experience this special family day. If we cancel at the last minute or have to leave early, it is because I know that the situation is too overwhelming. I want nothing more than to be with you and share my beautiful child with our family.

If you follow my lead and trust what I say, I know that we can have a wonderful holiday season together.

 

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi syndrome specialist. She works with Latham’s residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices. Do you have questions for our PWS specialist? Submit your “tip” topics or general questions to TipTopics@LathamCenters.org.

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