by Amanda Yanik
The first and only person that mentioned Prader-Willi syndrome to us while our daughter Saoirse was in the NICU was the incomparable geneticist, Chin-To Fong, M.D.. I have a vague recollection of him coming in on a Friday night after the first week of our NICU stay. He mentioned a previous patient of his who had been given the diagnosis of PWS. After a week of the most intense stress we have ever experienced, I was in no mental state to take in any more information at that point; it barely registered. A month later we met again with Dr. Fong to discuss the details and pertinent information about PWS that we would need to know. We discovered that he is also a professor with the University of Rochester, whose medical center is world-renowned. Dr. Fong travels the globe doing research for his department. To our surprise, he asked if we would be interested in presenting in one of his first-year medical classes. We were honored, but as PWS parents know, the first year is tough with a capital T. We rescheduled a few times and eventually a year and a half went by. He reached out to us again this winter and asked if we could come to class during the spring session and, on a whim, we agreed!
So on a cold Thursday in February, we loaded up Saoirse – dressed in her cutest tutu and big hair bow, we drove to Strong Memorial Hospital to speak with a class of over 50 first-year medical students. Though my husband does not care for public speaking, I love it! I find it empowering, and exciting! It’s even more so when you can use that platform as your safe space: bringing forth all those scary, dark emotions and all those days you spent fighting and advocating. We use chances like this to spread awareness. It’s powerful.
Saoirse, the youngest of our three children and the reigning princess of the family, naturally ate up all the attention. She danced, clapped, laughed, talked, and waved to the students during the hour-long presentation. The students simply adored her and she basked in her spotlight.
We were able to share our story from the very beginning when I was pregnant, and continue through our entire two-year journey as parents of a child with special medical needs. Dr. Fong simply wanted us to present our lives to his class to show that, when medical professionals give a diagnosis to a family, it’s not just a conversation. It’s a profound, monumental moment that they will forever remember. Those parents’ lives are altered in ways that they as doctors, may not realize the significance of this life-changing news.
We also used this class as an opportunity to really delve into how to give a diagnosis. We basically offered some guidelines and pointers of what to do and/or say (and what not to do). We developed and created these guidelines by polling over 30 parents of children with genetic disorders. After the class ended, the students came up to us to genuinely thank us for the advice. They let us know that we gave them critical tools to use that they couldn’t have gotten anywhere else except a special needs parent.
It was pretty amazing to know that from our sharing we may have just saved a future family from having a devastating diagnosis experience.
We left the hospital that day feeling like we really made a difference in our medical community. We were so honored to have been given the opportunity: to use our crazy and chaotic new life as a way to offer insight to these students into the world of a special needs family.
This is truly just one more way our beautiful daughter Saoirse has made us better people, and the world around her a better place.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.