Agents of Change for Prader-Willi Syndrome

This week I am representing PWSA (USA) and the PWS community at the Special Education Law Symposium sponsored by the College of Education at Lehigh University in Bethlehem, PA.  Today the keynote address was given by Michael Yudin who is the

 acting Assistant Secretary of the Office of Special Education and Rehabilitative Services at the US Department of Education.  During his presentation, Mr. Yudin called parents of children with disabilities “agents of change” because they push schools to believe and expect that more is possible for their children.  This parental expectation, in turn, drives schools to provide better services and supports to help students with disabilities to succeed academically and socially.

It was a great reminder that we all have a vital role to play in helping children with PWS to be successful in school.  It isn’t only the responsibility of parents in the PWS community to be agents of change for schools.  It is also a responsibility of PWSA (USA).  I am at this symposium because PWSA (USA) recognizes this responsibility and the importance of networking with other professionals in the special education field to learn as much as we possibly can about how to help parents and schools work effectively together to support students with PWS.  So over the next few days I hope to find some answers and resources for some of the educational challenges our community faces.  At the same time, I will share with others what we’ve learned through our PWSA (USA) special education advocacy program which is unique in the rare genetic disease community.

Mr. Yudin also said, “If you give a child an opportunity to learn, they will succeed.”  This is a core belief we share in the PWS community.  Students with PWS want to learn.  They want to do well at school.  They want to succeed as students.  And, when given the appropriate support and services, they do!

If you would like to learn more about what I’m learning at the Special Education Law Symposium this week please follow this blog and follow me on twitter @evanearlfarrar

-Evan Farrar, PWSA (USA) Family Support Counselor

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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