submitted by Anne Fricke and her daughter, Freya (13, living with PWS)
Before the conference last week, my daughter Freya had only met two other people with PWS in her life. One was when she was too little to remember. The other is a friend who lives 5 hours away and we see once or twice a year. So, on that Wednesday evening at the conference, as she and I hung out in the wave pool, trying to cool off and relax, I watched her face as she took notice of the people around her.
“Do they have PWS?” She would ask and, if I knew them or their parents, I would say yes, and watch the smile grow on her face. This happened several times. At our table at dinner, as families filtered in and out, she would ask again, “Do they have PWS?” They did, every time, and it really hit me then, seeing the joy radiate from her eyes, how lonely it must be some days. To be the only person in the room, in the school, in the town that has a rare condition. To be the person that everything is adjusted for. To have rules in place that apply only to you. To have meetings with a myriad of specialists all just for you.
Sometimes as parents, I think, we focus too much on the frustrations that the needs of PWS bring to our lives. The struggles with insurance and medications, the times spent dealing with bureaucracy, fighting schools and doctors, and our inability to have jobs or free time because we are so focused on making sure our loved one has what they need – that they fit into the boxes our society has created, that they are following some timeline of progression. I, for one, have not often thought of what it must feel like to be the only person with a condition. Uniqueness has always been cool. But, sitting at that dinner table, seeing the genuineness of that smile on Freya’s face, I finally realized another piece of the puzzle she had been missing.
“Does it make you happy to be around other people with PWS?”
“Yes!”
That yes, that joy, that realization that she isn’t alone in the world means everything. I have wiped away tears from her eyes because, in the rooms she is in sometimes, she feels like she “doesn’t exist.” She knows she may not have babies or drive a car like her peers. She knows her friends have freedoms that she likely will never have. But at the conference, in those spaces with other individuals with PWS, in a room full of people that don’t have to be explained to, she was happy, she was free, she existed.
Freya made a friend at this conference. I walked into the Oasis Water Park to see her and that friend sharing a double tube and floating down the lazy river, round and round just chatting. Last night, they spent over an hour on facetime together. I can now breathe a little deeper.
What a blessing and a gift these conferences are! Sure, for parents to find other parents to connect with. For siblings to hear that it is okay to feel frustrated and embarrassed and to grieve, and that it is okay to find humor in that. For families to go home with new knowledge, new connections, and a newfound hope. But perhaps most importantly, what a gift it is for our loved ones to experience not being the only one. To be in a room of people who may not be like them but can relate in a way that no one ever has before. To be in a space without the need for explanation or feel like all eyes are on you. Ironically, being in a room full of individuals with PWS at a PWS conference may be the only time they can really shed the label of PWS.
Thank you PWSA | USA, IPWSO, and FPWR for an incredible conference! For bringing so many of us together so that we parents, grandparents, and siblings, and especially our loved ones with PWS, can truly know what it feels like to not be alone. We will carry that lesson with us, that warmth and connection, as we venture again into those spaces where people can’t relate, and we look forward to the next time we can gather together again!
I asked Freya to write about her experience at the conference. Below is her response:
The first night at the PWS conference in Phoenix, Arizona, I felt happy, excited, and glad that I saw a lot of people with PWS from around the world. My favorite things about camp are that I had fun and I did a lot of crafting. I did scratch art, played games like chess, Sorry, and did a puzzle with my BFF leader Miss Amanda. I also did a puzzle with my other BFF, Maya. I made a bracelet for my BFF leader Miss Amanda. I had really good food at the camp there. My favorite part about the PWS conference is that I saw Justice for the first time and I went down the water slide with her and I had fun singing with her. I made a bestie named Maya. We had a lot in common. We went on a double tube on the Lazy River. We floated down and then went into the wave pool. We took a picture of us next to each other. I had fun hanging out with my family at the water park. I had fun drinking my Shirley Temple and having my avocado, cheese, ham, and lettuce wrap. I love seeing the drones in the dark sky making pictures for us and being in the hot tub. I had the best time at camp because I had a dance party, and I jumped with Solomon and Hannah. I danced with them and that’s why I became friends with them. I went to a museum with my dad and my little sister, and we saw animals that are extinct. I saw beautiful rocks and crystals and bones. I love the sticker books there. (Mom note: Thank you Soleno for providing the sticker books to our loved ones! You really know your audience.)
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.