The First Ever School Times E-Letter!

pwsa usa logo 

Welcome to the first issue of School Times!  The first regular publication to deal exclusively with PWS related school issues.  We hope as this bi-monthly e-letter evolves it will be an essential school resource for you and others in the PWS community.  So please feel free to share this first edition with other parents and professionals.  In this this issue we introduce some regular features – with more to follow in future issues.

  • Tips and Strategies – where you will find practical help.
  • An Expert’s View – where you will hear from PWS educational experts about various topics.
  • The Advocacy Exchange – where PWSA Educational Advocates will share their insights and experiences.
  • Kate’s Resource Corner – where you will find information about helpful PWSA educational resources.
  • School Health News – where you will learn about school health issues specific to PWS.
  • Upcoming Events – listing upcoming educational opportunities (from PWSA and other agencies).

In future issues we want to answer some of your questions with a Mail Bag section so please e-mail me questions or topics you would like us to address

We look forward to your questions and your feedback and thank you for your continued support of PWSA (USA)’s mission to help parents and schools work together collaboratively and effectively to benefit students with PWS.  Together, we are making a difference!

Evan Farrar, Editor and PWSA (USA) Crisis Intervention and Family Support Counselor


shawn and kate


Here is what parents and professionals across the country are saying about PWSA (USA)’s newestschool video resource, “Tips for Teachers,” with Elizabeth Roof of Vanderbilt University.

“Wow!  I just saw this video and it is


“I can’t thank you enough.  I forwarded the video to my son’s new teacher.  I think it will really help her understand PWS and how to avoid behavior issues.”

“Amazingly helpful.”

“This is great!  I will be working with a student with PWS and this video offers great strategies.”

Note:  Elizabeth Roof will be one of the speakers at PWSA (USA)’s National Conference in November!

We encourage you to send the video link and Tool Box (available with the YouTube video) to your child’s teacher.




I KNOW WHAT YOU’RE THINKING. ” Here we go again.  Have to educate this years’ teacher(s).  O, how I wish he could have the same teacher as last year.  She really “gets” him.  She read the materials and watched the videos I provided, listened to my input and there was rarely an incident she couldn’t handle.”And if your child is going to school for the first time, I’m sure you have loaded up with every resource PWSA/USA has to offer and more.  You dropped them off ahead of time so your child’s teacher could get a head start on her education of PWS.

Well, the reality is that not all teachers know who they are getting ahead of time or, if they do know, they may not have any records on the child to review prior to school starting. Often, on opening day, they are given a list of student names and, if lucky, an IEP or 504 plan for those students who have them.

Through experience, many parents have adopted a proactive approach.  They create their own version of what the teacher needs to know about their child at the outset.  It might take the form of a brief packet, a homemade brochure or flyer.  But it always contains the following: a fun, smiling picture of your child, a brief description (written in easy-to-understand language) of PWS, bullet points of your child’s assets and likes as well as needs and dislikes.

It starts off with a positive introduction.  “Hi.  I’d like to introduce you to my son, Johnny.  Johnny is 10 years old and has PWS.  He loves school and is eager to win the positive attention  of his teachers, so frequent praise can go a long way to keeping him focused and motivated. His favorite subjects are:______________, but he does struggle with math and can become easily frustrated.  He has two friends in the class, Sara and Paul who have known him since kindergarten and provide friendly support.  There is one student, however, who he does not get along with and I’ll speak to you privately about that situation.  In the meantime, here are some more tidbits about Johnny to help you understand and teach him more effectively. Continue with likes and dislikes, strengths and needs.”       


End with a statement of your desire to collaborate with the teacher along with your phone number and/or email address.


O, and don’t forget to send in a box of tissues and wipes right away.  Teachers love to have  those two items readily available in their classrooms!

Heather Molzer

For many of us the school year has just begun and for the rest of us, the first day is right around the corner.  Are you looking at this year with excitement or dread?  Although excitement and relief is often how many parents feel about the start of school, those of us with kids who have extra challenges often look at the start of school with anxiety and dread.  How can we change that?  How can we help our kiddos have a great school year and look forward to the return of routine, great learning and renewal of school friendships?

Here are some tips that can help make the start of school and the rest of the school year easier and successful for your child:

  • Start off on the right foot:
    • o   Meet and greet the people who will be working with your kiddo.  Establish a great relationship.  People are more willing to help or go the extra mile when they know you and like you-remember you catch more flies with honey than with vinegar!
      • Check-in with teachers regularly.  It doesn’t hurt to stop by with coffee or muffins for the office staff, teacher and/or the person who is responsible for implementing your child’s IEP.
      • Bite your tongue…  This one is tough! Remember, your goal is to have a successful school year and to get the rest of the people involved to cooperate in this goal.  Being nice (this does not mean backing down), holding back and waiting for a more appropriate time when you feel you’re losing your temper, smiling and complimenting the things that are working are great ways to facilitate a positive relationship and gain cooperation.
      • Choose your battles! Is it more important for your child to have food locked up in the classroom or the school providing a healthy snack every day?  Sometimes, the other side needs to have a “win” in order to feel better about accommodating you.  If providing a healthy snack for your child is doable and it means they’re more cooperative about meeting other needs, then you’ve both won!
  • Give them tools:
    • o   Help your kiddo understand their strengths and challenges and help them express this.  Self-advocacy can start early on!
      • Make a list of the things they enjoy or do well-what skills does it take to accomplish these things?  Those are strengths and capabilities!  Emphasize those.
      • What things don’t work?  What happens on a bad day?  What leads up to a meltdown? Identify those too and help your child self-identify.  Help them to realize when things are starting to stress them or make them anxious and work on expressing those feelings to teachers, aides and caregivers.
      • Identify what things help your child cope and make sure they are aware.  When things are starting to overwhelm does it help to get out of the classroom and go for a walk?  Does going to a quiet room to calm down help?  Share those strategies with the teachers, address them in the IEP, give that information to any staff that work with your child (playground monitors, substitutes, etc.)
      • Write it all down! Put all this information in writing and keep it handy. Some parents find it very helpful to create a one-page document with this kind of information that’s easy to provide to new teachers, substitutes, coaches, etc.  There are several resources on creating a positive one-page brochure for your kiddo.  You can start at:
  • o   Provide information to their classmates:
    • This can be a talk or short presentation with the class in the first few days of school.
    • It can be led by you or your kiddo, depending on their comfort with that.
    • It’s important to explain, not just their challenges or safety around food, but emphasize some of their strengths and/or how they are similar to the other kids in the class (favorite toys, movies, music, etc.). It’s important for their classmates to understand their challenges but also relate in a way to facilitate friendships.  Here is a link to my son’s presentation that he practiced before the first day of second grade:
    • Answer questions! Kids are much more afraid or leery of the unknown.  If they know what’s going on, they’re more willing to help out and be open to friendship.
  • Lastly, remember a couple of important factors:
    • o   Behavior is a form of communication.  Negative behavior is communicating that “something” is not working.  Try to identify what triggers the behavior…is it anxiety?  Is it hunger?  Is it an overwhelming environment?  What can be done to prevent the behavior before it gets out of hand?  Consider requesting a functional behavior assessment if behavior is negatively impacting their school experience.  Here is some good information on behavior assessments, plans and positive supports:
  • o   Keep a positive attitude!  Our kids are smart; if you are worried about school or have a negative opinion about it, they will pick up on that.  Think of the new school year as a new beginning and fresh start at having a successful learning experience!      -Heather Molzer

Heather is a PWSA (USA) Special Education Advocate trained at the PWSA (USA) Wyatt Special Education Advocacy Training (WSEAT) in March, 2013.  In each issue of School Times a WSEAT advocate will share their insights and expertise in this column. 

The PWSA (USA) Family Support Team has developed a wonderful School Portfolio packet for parents and teachers.  In this packet there are articles and resources to help a teacher understand PWS and how important the environment is for children with PWS.  It also contains end of the year evaluations that help the next teacher understand what worked well for that child in the previous classroom.  The evaluation for the parent is also helpful for the next teacher.  We encourage parents to pass this school portfolio along to each teacher before the school year starts so that they can have information about a student with PWS and have time to consider the environment before the child arrives.  This portfolio is available for purchase through PWSA (USA).Kate Beaver, PWSA (USA) Crisis and Family Support Counselor
Health and safety is an important part of helping a child with PWS to be safe and successful at school.  Barb Dorn, a former PWSA (USA) Crisis Counselor and an expert on PWS school and health issues, has put together this great resource to share with school nurses, teachers, and other school staff.    Click Here For Resource
Upcoming Events

November 7-9th, PWSA (USA) National Conference in Orlando  This year’s conference will feature educational workshops on IEPs and Making Schools Work.  To learn more and to register visit:

 National Conference

Wrights Law Parent Advocacy Training Programs

Oct 17 – Wilton, CTOct 18 – Long Island, NYNov 7 – Seattle, WANov 15 – Tucson, AZ

For more information visit

To subscribe to School Times, e-mail

About pwsatoday

PWSA (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
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