Posts Tagged ‘Understanding Prader-Willi Syndrome’
TIP 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: Kyphosis
Kyphosis is a curvature of the neck and spine and can occur in individuals with Prader-Willi syndrome due to poor muscle tone. Daily exercise to maintain back and neck muscles is essential to decreasing the likelihood of Kyphosis. Always consult with your child’s doctor if you see signs of weakening muscles or notice even the…
Read MoreTip of the Week: PWS Awareness Month (Week 5)
In honor of Prader-Willi Syndrome Awareness Month, we shared a “Tip of the Day” on social media throughout the month of May. Here are this week’s tips: People with PWS experience temperature differently. Layering clothing in summer and shorts in winter is not uncommon. Have a picture in their room of what appropriate clothing for…
Read MoreTip of the Week: PWS Awareness Month (Week 1)
In honor of Prader-Willi Syndrome Awareness Month, we’re sharing a “Tip of the Day” on social media throughout the month of May. Here are this week’s tips: Children and adults living with PWS often struggle with regulating their emotions and impulses. Keeping a predictable daily routine can often help to keep anxiety down. Many people…
Read MoreTip of the Week: Planning for Easter
These tips to help you have a happy, stress-free Easter with your family member with PWS were shared on the “Tip of the Week” a few years ago, but the advice is fitting for this Easter weekend. Holidays don’t have to be stressful if you prepare ahead of time and know how much you and…
Read MoreTip of the Week: Managing Demands
Our kids have a tendency to never give up! That is helpful in many parts of their lives but can be frustrating and tiresome for parents when it comes to constant requests for “stuff”. Here are some ways to manage the seemingly endless demands for more: 1. Agree to what you can say yes to. Make…
Read MoreTip of the Week: In her words – Chloe
At 12 years old, Chloe is wise beyond her years. She has the energy and enthusiasm to fill the room and she’s the first person to try to help a friend in need. Chloe requested that she be interviewed for the Latham Tip of the Week because, as she said, “I have a lot to say…
Read MoreTip of the Week: Feeling Alone
Raising a non-typical child can be a lonely place; raising a child diagnosed with PWS multiplies those feelings because of the rarity of the syndrome. You get advice to not compare your child to your friends’ children, but it is unavoidable. You are enraged when you see pity in people’s eyes and you go to…
Read MoreTip of the Week: In her words
Annika approaches everything in her life with energy and enthusiasm. She laughs easily and often and is always the first one in line! When Annika first came to Latham School just over a year ago, there were big challenges that we needed to work on. As 2017 came to a close, we sat down…
Read MoreTip of the Week: Creating best practices
In the almost two decades that I have been working with people diagnosed with Prader-Willi syndrome, I have seen best practices change many times. PWS is such a complex disorder that the need to change and be flexible with your beliefs is integral in the success of children and adults with the syndrome. You do…
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