Dr. Destiny Pacha, ED.D., is thrilled to have written and published the first children’s book about Prader-Willi syndrome, It Starts With Hello: Katie’s Story About Prader-Willi Syndrome. PWSA | USA had the opportunity to sit down with Dr. Pacha to understand the meaning behind the book and what inspired her.
She describes the book as featuring a character with PWS, Katie, who starts her day by waking up and then takes readers through her school day. “It discusses some of the intricate nuances of PWS and the support they need throughout their school day. It talks a little bit about some of the behaviors the other children might see, but the whole point of it is to have children understand and recognize that even though a child might have PWS, they are very much the same as any other child,” Dr. Pacha explains.
Dr. Pacha believes in the importance of representation in media. “I think everybody has the right to see themselves in either the TV shows they watch or the books they read, and there wasn’t anything out there. Ultimately, Katie’s story is for every child out there with PWS so that they can see themselves in the book.”
Reflecting on the individuality of each person with PWS, Dr. Pacha emphasizes, “Every individual with PWS is an individual and has a story to share and has needs we want to try to meet and understand. This can be hard when everything is often very medical, and the verbiage can be very harsh, and you see a lot of numbers and scary stories out there. With Katie’s story, the goal is to show this in a way that is inviting and hopefully will encourage others to share their stories. I also want people to know that inclusive books are important, and they do and will change the world by helping us understand and include others with rare disorders or any disability.”
Dr. Pacha’s journey into the world of Prader-Willi syndrome began while she was working in a school as a special education coordinator. “One summer, I remember it very clearly, I got an email from my principal at the time saying he had met with some parents that had moved into our area, and they had four children, one of which had special needs. He didn’t know much about it, so he asked that I reach out. We spoke many times and sent back and forth a lot of emails. As soon as they said Prader-Willi syndrome, I Googled it,” she recalls.
Despite her background in special education, Dr. Pacha admits, “It’s hard not to make assumptions, and I will still to this day, sadly say, that I made some assumptions. I started trying to put her in a box, where there is no box for PWS. It is a spectrum, and every child is on different parts of that spectrum in different areas.”
Through this experience, Dr. Pacha learned valuable lessons about avoiding assumptions. “We welcomed her to school. We celebrated when she finally got an appropriate IEP and was given what she needed to be successful. I worked very closely with that student, almost daily with our behavior specialist, and to be honest, I fell in love with her. I found the syndrome itself to be interesting in that there are so many facets to it – educationally, and behaviorally – that I formed a bond and found my passion in this setting of helping her make her day successful at school.”
This passion led Dr. Pacha to start her own company, EmpowerED Solutions. “I pretty much now solely work with the Foundation for PWS Families out of the University of Florida, families across the country with Prader-Willi syndrome, and help children find a way to access their education. The biggest thing I say is that children need to be safe and secure, but we also need to make sure they’re being given the accommodations they need, the time they need, and the support they need because they can be successful in school. It’s a really heartbreaking myth of the thought that they can’t be safe in a public school or that they can’t meet learning gains or make the same successes that others make at school because they can,” she asserts.
Dr. Pacha feels her path embodies the idea of passion meeting purpose. “I found a passion and a love for a little girl who has Prader-Willi syndrome, and my purpose is and always has been to educate and support others in educating children. In a sense, I have been able to bring together two things, my background in special education and my love and passion for a little girl, and be able to help families all over get what their children need to be happy, successful, and safe in school.”
Expressing her gratitude, Dr. Pacha says, “I am absolutely honored that the book is doing so well and being taken into homes and hearts. It means a lot to me to know that children and families are finding that connection. My next step is to write another book for the parents to tell their children, to help the children living with PWS understand more about themselves.”
Dr. Pacha credits the success of Katie’s Story to her team. “I want to give a shoutout to two very important people who helped make this dream a reality of Katie’s Story coming to life. My Marketing Director and Creative Director, Lauren Eggert with Gray Fox Design Co., is not only a friend but she told me to take my dream and to do it. Also, my amazing Illustrator, Tara Espinosa Connell, worked tirelessly with me on every single detail of this book. If you get a copy, you will notice down to Katie’s band-aids, to her lunch, to finding the hidden zebra for rare disease, Tara was truly able to bring Katie and her friends and her story to life.”
If you live in the United States and would like to purchase a copy of the book, click the button below. By ordering from Dr. Pacha’s website, you can choose to receive a signed copy of the book with a personalized message from Dr. Pacha, which is free of charge! For those living internationally, you can order the book through Amazon UK, or Amazon AU.
Dr. Pacha has also created a couple of FREE printable activities that go along with the book for parents and teachers, including a word search, a cross-word puzzle with basic comprehension questions, and an activity where the child plans their perfect day schedule: CLICK HERE TO ACCESS
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.