TIP of the WEEK: End of Summer Survival Guide

1. Stay hydrated and cool. With the temperatures becoming dangerously high in most of the country it is critical that you keep your children hydrated. Body temperature dis regulation makes detecting over heating in time difficult. Limit outdoor activities to morning and evening on those very hot summer days. 2. Keep their routine. With camp,…

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TIP of the WEEK: Healthy Summer Snack Ideas

No matter what your plans are for this summer you no doubt have a different schedule and routine than you do during the school year. This change in routine can be very difficult for our kids with PWS, not to mention the constant challenges of BBQ’s with family who may not understand your child’s needs.…

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TIP of the WEEK: Attention Span

People with PWS can have difficulty paying attention and/ or maintaining focus for more than a few minutes. Here are some ways to improve your child’s attention span. 1. Eliminate distractions. It is often difficult for our kids to ignore distractions.  When practicing focus techniques be sure to keep external distractions to a minimum. 2.…

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TIP of the WEEK: All of Those Questions!

Repetitive question asking comes with the PWS territory but that doesn’t mean it’s easy to deal with. Question after question (and often the same question repeatedly) can wear down the most patient person. Here are some things you can do to lessen the repetition: 1. Remember that this is a symptom of anxiety. Knowing that…

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TIP of the WEEK: Managing Stress

Here are some tips for helping your child reduce their anxiety: 1. Teach coping skills. Deep breathing, visualizations and muscle relaxation are all excellent tools to decrease anxiety. 2. Praise bravery. Every time your child does something that previously made them anxious or scared, reinforce their bravery. 3. Point out their triggers. The more your…

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TIP of the WEEK: My PWS Resolutions

This year I will try my best to: 1. Spread awareness everywhere I go. Even when it is easier to stay quiet. 2. Teach. Everyday. Understand that problematic behaviors are a result of a lack of skill in that area, not a conscious decision to act out. Teach the skills and the behaviors will decrease.…

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TIP of the WEEK: The End of May

It never fails to strike me how our tiny community comes together during the month of May. We use social media, fundraisers, and gatherings to teach the world about PWS. Some of us share the beauty of the syndrome while others share their darkest days all to educate those outside of our community what it…

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TIP of the WEEK: To Do List

We spend so much time talking about what not to do with a person with PWS; how to avoid outbursts, how to not make things worse. Here are some do’s: Laugh. Every day. I’m willing to bet that your son or daughter is pretty darn funny because I know that the people that I work…

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TIP of the WEEK: Peer Support

Peer support is a helpful and often underused strategy to pull out of your toolbox when your child needs some extra help. Like most kids, it can be easier for our children to accept help and advice from peers rather than parents or caregivers. 1. Connect with other families. So many of you are physically…

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TIP of the WEEK: Dental Issues With PWS

  Dental issues in people with PWS often start at a young age and can last throughout adulthood. Thick saliva, picking at gums or the tongue, poor overall dental hygiene and rumination are all contributing factors. Low muscle tone and challenges with fine motor control make proper teeth brushing especially difficult. Here are some ways…

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