PWS Tips
Tip of the Week: PWS University Podcast 7: Latham’s PWS-specific consultations
Our seventh PWS University podcast featuring highlights of recent PWS consultations is now available. Latham Centers’ Prader-Willi Syndrome Consultation Team provides customized consultation services tailored to the specific challenges and needs of children and adults with PWS. We provide best-practice education and training to families, educators, and providers. Areas of consultation range from day program, classroom,…
Read MoreTip of the Week: Tomorrow is Rare Disease Day!
As we conclude the month of February and celebrate Rare Disease Day (the last day of the month), we fondly recall last year’s “Show Your Stripes” project organized by PWSA (USA). The blog post on our website that day was priceless: “For Rare Disease Day, Latham students “show their stripes”. Patrice Carroll is Latham…
Read MoreTip of the Week: Commonalities in the 7,000 rare diseases
One week from Saturday is Rare Disease Day. Although each of the more than 7,000 rare diseases is unique, the rare disease community is united by the many commonalities. To raise awareness around rare disease issues, individuals, families, and organizations like PWSA (USA) are part of an annual international movement in support of everyone who…
Read MoreTip of the Week: #GrowingupRare
With three more weeks until Rare Disease Day, we encourage the entire PWS community to join with PWSA (USA), Latham Centers, and other organizations supporting those with rare diseases to get involved. Together, we can help ensure that individuals living with rare diseases will have more equitable access to diagnosis, treatment, care, and social opportunity.…
Read MoreTip of the Week: Rare diseases impact over 300 million people worldwide
Rare Disease Day, the official international awareness-raising campaign for rare diseases, is the last day of February. The focus of the day is to raise awareness – not only for the general public, but also for decision-makers – about rare diseases and how they impact individuals and families. There are over 300 million people worldwide…
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 MoreIEP Components – Clinical and Behavioral
Parents have asked for suggestions about information that should be included on an IEP created for a child with Prader-Willi syndrome. Last week’s tip outlined Food Safety components; below is a list of Clinical and Behavioral suggestions to include in the IEP. Clinical and Behavioral Access to Psychologist or Social Worker Comprehensive Treatment Plan (clinical report) Health Care Report…
Read MoreTip of the Week: Food Safety
We’ve been asked for suggestions about what should be included on an IEP created for a child with Prader-Willi syndrome. In this first of a 3-part tip series, we’re sharing important Food Safety components we recommend for the IEP. Information to include on your child’s IEP: Food Safety Food free environment: no food on-site, no food as…
Read MoreTip of the Week: De-escalating a meltdown
We know how difficult it can be to watch your child have a meltdown, especially because of how helpless it can make you feel. Here are some tips for families and caregivers of individuals with Prader-Willi syndrome to help de-escalate your child during a meltdown: Ignore verbal threats and aggression but answer their questions. Keep…
Read MoreTip of the Week: Setting goals
Helping your child make resolutions for the new year is a great way to take a close look at what they want and hope for themselves. So often we design goals and programming based on what we feel is best without taking the child’s wishes under consideration. When a child helps to create the goal,…
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