TIP of the WEEK: Back to School


As we get ready for back to school it’s important that everyone in your child’s life be on the same page. I am sure that all of the necessary meetings have taken place but be prepared for constant reminders, especially if your child’s teacher and/or aid is new to PWS. Here are some talking points for that inevitable phone call:
1. My child’s nutritional needs/diet restrictions are not suggestions or recommendations. They are essential to her physical and mental health. No, it is not ok for you to use candy as a reinforcer. I am sorry but you will have to figure out a way to teach math without using M&M’s. No, Skittles aren’t ok either.
2. Yes, I know my child doesn’t like transitions. No, I will not come and pick him up because he became upset when recess ended. No, it is not ok for him to miss recess tomorrow. Experiencing transitions is the only thing that will help him adjust to them.
3. I am glad that tomorrow is Sally’s birthday, no her mom cannot bring in cupcakes for the class. No, it is not ok for my daughter to eat “a healthy snack” while she watches the other kids eat cupcakes. Sally can have all of the cupcakes that she wants when she gets home. Food in the classroom is not an option while my child is a student there. End of story.
4. My child lives with constant anxiety, please remember this when you; change the schedule, have a substitute for the day, inconsistently enforce the rules, use punishments (even though I told you that they don’t work), re-decorate the bulletin board… Yes I know that change is inevitable I am only asking that you show compassion for my child when she reacts to it.
5. Please pick your battles. Unless my child’s hand flapping, eye fluttering, need to sit in the same seat or next to the same kid, desire to use a brand new pencil everyday (yes I will supply them) or need to ask a question even though he knows the answer is terribly disruptive to the rest of the class- please allow him to do this. See point #4- my child lives with high anxiety all of the time and if these things help her cope then let it be.
As any parent of a school aged child knows, this list could go on and on and I wish that these examples were made up but they are not. Stick to your guns and stay the amazing advocate that you are!

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Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families and consultants, continuously learning and teaching about PWS best practices. 

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