PWS Tips

When your child is experiencing a challenging time either in school or at home, it can be difficult to create joy in their lives. During times of crisis we tend to focus on everything that is wrong with the situation, causing very low self-esteem and shame for your child and making it almost impossible to…

Last week, we posted a blog about Latham’s change in menu based on the Mediterranean style diet. Since our new menu was implemented, we have seen many positive outcomes for our residents and their families. (Note: you should always consult with a physician before making dietary changes.) Throughout our PWS community, one of the questions…

As a winter storm moves across the country, bringing snow, ice, and cold temperatures to New England this weekend, it’s the opportune time to share a reminder about hypothermia, its warning signs, and precautions to take.    Hypothermia is a serious medical emergency that occurs when your body cannot produce heat as quickly as it loses heat.…

Thanks to the folks at the Massachusetts Department of Developmental Services, I stood before more than 40 people in Middleboro today to present on the topic of Prader-Willi syndrome. Feedback was that today’s session was so helpful to so many, reminding us all of the far-reaching impact of sharing our expertise with the PWS community.…

This week’s tip comes from a 13 year old student with PWS who wants to help other kids during home visits: “ I love going home but I get anxious because I don’t know what to expect. I don’t know what I’m going to eat or who I’m going to see. It would help me…

Each year at the end of December, I ask our students for their New Year’s resolutions. I ask them what they would like to do differently or better for the coming year, and their answers never disappoint! I want a girlfriend but one that isn’t so confusing all the time.  – age 17 I want…

Jan, mother of a child with PWS, asked a great question this week: “Is it common for individuals with PWS to have high anxiety, increased behaviors, and heightened stealing of material things at Christmastime?” Thanks for your question, Jan. Yes, it is very typical for kids with Prader-Willi syndrome to struggle at this time of year.…

  We are thrilled with all of the amazing feedback we have received from our new video. Several people have asked what inspired us to make the second installment of “And they said my child would never”, and the answer is simple: the kids inspired us and continue to inspire us every day. There are so…

Some of the most important lessons that I have learned have not been in school but in casual conversations with the kids and adults that we support. This conversation taught me that our best intentions sometimes fall short. Listen to what each child is saying, step to the side and allow them to take the…

That time is upon us – the time of family gatherings, television commercials promising us that the gifts we buy will equal eternal happiness, and of course, endless amounts of food. So how do we get through the next several weeks and maybe even manage to enjoy ourselves? We all experience stress during the holidays,…