Posts Tagged ‘Prader-Willi Syndrome tips and advice’
Latham publishes 11th “LivingHealthy with PWS” Newsletter
We’re so grateful to our staff for collaborating to create the Spring 2020 “LivingHealthy with PWS” newsletter – published today and available on our website https://www.lathamcenters.org/wp-content/uploads/2020/06/LivingHealthyVol.11.pdf. The latest issue of LivingHealthy with PWS, Latham’s quarterly newsletter for the Prader-Willi syndrome community, is packed with good news and hope. The writers in this edition include Katrina Fryklund,…
Read MoreTip of the Week: IEP Components – Staff Support
Parents have asked for suggestions about information to be included on an IEP created for a child with Prader-Willi syndrome. Previous tips have outlined Food Safety and Clinical and Behavioral components; below is a list of Staff Support suggestions to include in the IEP. Staff Support Must always be within “eyeshot” and/or “earshot” of staff Constant close monitoring during all parts of…
Read MoreTIP of the Week: New PWS University podcast features holiday activity ideas
During the holiday season, those of us who have someone in our lives with Prader-Willi syndrome are considering a myriad of complications… We wonder how we’ll be able to foster a positive holiday experience despite the typical stressors this time of year such as food-related activities, high-stimulus environments, and changes in routine. In this week’s…
Read MoreTip of the Week: Celebrating in your own way
With the holidays directly upon us, I know that the anxiety and feelings of being overwhelmed are high. Our kids feel our stress, react to a change in their routine, and struggle with maintaining appropriate behavior when they know that expectations are high. During this time, please do not forget to give yourself a break,…
Read MorePreparing for the Holiday Season: Holiday Anxieties and Meal Preparation
This time of year we celebrate appreciation and gratitude. Holiday meals and family visits dot our calendar, excitement pours out of the windows as gifts and holiday preparation are discussed, and anxiety can be felt bubbling for many in our world of PWS. Last week in our TIP, Patrice Carroll wrote a “holiday letter to…
Read MoreTip of the Week: A moving essay by a loving sister
The New York Times published a profoundly moving article last week – it is worthy of sharing with the Prader-Willi syndrome community and beyond. In “Mourning the Loss of a Sibling Rival,” Gina DeMillo Wagner writes, “My brother had special needs and could quickly veer from loving to violent. When he died, I grieved for…
Read MoreTIP of the WEEK: Making the Most of Summer
Transitioning from school to summer vacation can bring some unique challenges for families living with PWS. While typical children look forward to the days of leisure and lack of routine, the child with PWS can find this change highly stressful and, at times, frightening. Getting in to a new routine as soon as possible is…
Read MoreTIP of the WEEK: Happy New Year
As 2016 comes to a close we look back at our accomplishments, our challenges, our mistakes, and we promise ourselves to do better next year. And we will (at least most of the time). The ending of a year and the beginning of a new one gives us the opportunity to change if we want…
Read MoreTIP of the WEEK: Happy Holidays
My only tip this week is to enjoy your holiday! Be thankful for what you have and look for the simple joys. Celebrate your strength and know that you are never alone. The PWS community is here for you. We understand the challenges and delight in the successes of your children every day. Happy holidays!…
Read MoreTIP of the WEEK: The Hardest Decision
There are few things more difficult than questioning whether or not your child needs residential care. Even if you are approved for funding you still need to make a very difficult decision. Here are some things to consider when you are searching for the answers: How is your family being impacted? If you have other…
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