Contributed by Patricia Blount
“I would like to introduce you all to the light of my life, Madison Nicole. Madi was my first born and I was not much more than a child myself at 19 years old and a newlywed when I had her. We were told she may have a syndrome, but her doctors weren’t sure what to test her for except Downs Syndrome. When the test came back negative, we were at a loss. Years passed and Madi did well but with delayed speech and milestones. As time passed, we noticed her appetite increased and she would sneak food after we had already eaten a meal. After a lot of testing and different doctors, at 12 years old, we discovered she had Prader-Willi syndrome. We started her on growth hormone and made some extra adjustments with our food situation. Other than those changes, we have tried to keep Madison on a “typical” path. She attended streamline classes and finished high school. Madison has done cheerleading, dance, and pageants. She has her driving permit but isn’t too thrilled about driving unless it’s a short drive on a not so busy road. And we’re ok with that! She loves to exercise with her trainer and looks forward to the Running for Research with Dr. Miller each year. Madi enjoys cooking her own meals and food prepping. She loves trying new recipes or altering a recipe to make it PWS friendly.
Over the years, she has made many friends and has also dealt with some bullies. At 21, she makes the best of her life and is very happy. With the extra care we take with food at home, a locked pantry with an auto lock, Madi is able to stay home and tend to our small farm. On the days she’s not working on the farm, she comes with me to my salon (named after her, Nicole’s Salon). She greets customers, does laundry, and answers the phones. She also has her own goat soap making company, The Fancy Nanny. She likes to sell at local farm swaps and craft festivals. She makes all her soaps herself, and I let her do all money transactions, greet the customers, and answer their questions. Recently, Madi has met a young man named Jacob. Madi and Jacob have a lot in common (Jacob has Downs Syndrome) and they spend countless hours on the phone together. They are planning on attending ‘Night to Shine’ together this year and are always making date night plans. They love to go out to eat, go bowling, or the movie theater. Her dream is to go to Paris and see the Eiffel Tower, which I intend to make happen one day!
After all the years of anxiety and worry, I have found that I was just meant to be a special needs mom, and I thank God for her just the way she is. My best advice to a new parent? Live life day by day. Don’t look too far to the future or push them to reach a milestone until they are ready. Love them for who they are, and don’t look at them as a syndrome. My husband always told me when we were waiting on a diagnosis, “A diagnosis doesn’t change who she is.’ She is Madison Nicole, and she is our ray of sunshine!”
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.