A few days ago, I was chatting with a fellow special needs mama when she mentioned that there was a conference on the other side of the country for the condition her daughter has, but she wasn’t sure if she should go. It took everything in me to not tell, “WHAT?! ARE YOU NUTS?!” Instead, I calmly began to share my experiences at the PWSA (USA) 34th Convention this past November with tears in my eyes and goosebumps all over. I began to relive each amazing moment of those 3 days that changed everything for our family.
You see, when our daughter Saoirse was diagnosed with Prader-Willi Syndrome, we were heartbroken. Overwhelmed. Lonely. But then we received our welcome packet, joined the PWSA (USA) 0-3 Facebook group, and just became immersed in this supportive and loving community. I began talking with 3 other mom of kiddos who were born the same month as our sweetie was and created a bond that is truly special and unbreakable. Grown through question asking, advice giving, support offering, and just loving one another. Then came the fall and the convention was upon us, so we had to decide if we were going to go or not. One mom said she was going, and then another, and finally all 4 of us just said YES and decided to jump on this experience. We were anxious about meeting other friends with PWS, learning about the scarier parts of the disorder, and upheaving our families and lives to travel all over the country(and world!), but I know not one of us even comes close to regretting it. The information alone was just invaluable. From therapy ideas, to diet plans, to supplement lectures, and taking care of ourselves as caregivers, each session was so applicable and helpful to our journey.
“Day 2 was full of love, learning, and cementing some truly astounding friendships. We are coming away from this convention having learned more than we ever realized, but also having created bonds that will keep us strong during the hard times to come. The people in the PWSA (USA) community are more wonderful than we could ever convey and have changed the course of our journey with Prader-Willi just in the last 48 hours. A huge thank you to the PWSA (USA) Parent Mentor program {Diane Seely & Lori Moline} for getting us to this convention and to everyone involved with the planning and execution of this event. We loved every moment.💗💗💗💗”- Daniel & Amanda Yanik
But the truly irreplaceable thing about the convention wasn’t the knowledge or the experts, it was the relationships. The beautiful, indescribable buzz in the air of love just pouring out for each and every family. The coming together of thousands of people who just “get it”. I’m pretty sure I walked around crying for three days. Happy tears of finally being understood and not needing to explain myself(or PWS!) to anyone. It was one of those experiences that changes the course of a life. Each night we stayed up late sharing stories and hugs with other parents and not wanting to leave each other, even if it was 3am!
The countdown is on for the 35th convention in 2019 and we cannot wait to immerse ourselves in that magical place of love, knowledge, and understanding once more! Thank you to the wonderful leaders of the PWSA (USA) for changing our lives forever and more than you will ever know.
Love,
Daniel & Amanda Yanik
(Parents of Saoirse Noel Yanik, age 9 months, from NY)
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.