We reached out to our PWS community of parents and caregivers to ask, “What is your PWS Parenting Hack?”
Our goal was to gather tips and tools that help parents and caregivers navigate the challenges of PWS. What may seem like a simple tip from one parent could be life changing for another. So, please take a moment to read how other parents approach the PWS journey. If you’re inspired to share your PWS Parenting Hack with the community, please follow the link at the end to share yours. Your hack may bring some much-needed help to a struggling parent.
Tammie (Mom to adult son, Victor): “Put a packet together on information about PWS and your specific child and bring it to your doctor’s office. They may not read it right away but really stress to them how important it is because it is a rare disease.”
“Do one-on-one time with siblings once a month, without their sibling with PWS. It means the world to them because they always take a step back.”
“Non-PWS siblings had a small safe in their rooms for special belongings and small snacks where they are not visible.”
Anne (Mom to Freya, 12): “I know Freya’s ‘fight’ song (Roar by Katy Perry). Sometimes, when she shuts down and can’t (or won’t) respond, I turn on this song and start singing and dancing. It helps pull her out of herself and start interacting again.”
“When we go out to eat, Freya knows that if the portion is too large, half of it will get put in a to-go box right away. She can eat if for lunch or dinner the next day.”
Emily (Mom to Olivia, 11): “I basically just hug my child as many times a day as possible and try to remember that their life has joy, desire – all we go through.”
Sarah (Mom to Khaled, 4): “Buy the no sugar lollipops ahead of a school event and in bulk. Give it to the teacher or whoever will be giving away treats on the festive day they are having.”
“Don’t give up in tantrums. Don’t give in. You can change the behavior, even if it is a PWS behavior.”
“Always have bottles of water on you when you go out to eat or anywhere you need to guard yourselves from evil juices by watering them down!”
“Keep your ER letter. Have copies of it everywhere in your house. On the fridge, in your child’s backpack, everywhere you go. You never know when you might need it.”
Kristi (Mom to Justice, 20): “Whenever we are going out for dinner, we always look at the menu first so she knows what to order when it is time.”
Melanie (Mom to Josephine, 5): “Out to eat? Water while we wait (I tell the waitress no bread in advance).”
“Out to eat? Use the super cool “Attention Wait Staff” Restaurant card on PWSA | USA’s resources page and hand it to the host/hostess/waitstaff.”
Jen (Mom to JoJo, 7): “We use visual schedules, especially when we’re changing the routine or traveling. It helps calm her mind and cuts down on questions from 1 million to 500K.”
Kayla (Mom to Luella, 4 1/2): “When I take Luella somewhere, I do my best to find the PERFECT time to tell her our daily plan. Telling her things too early can excite her to the point that she will become stuck and repetitive on the topic or item. Not telling her soon enough could cause anxiety about a transition she was not prepared for. I am typically vague when I say we are getting ready to leave, we have things to do today and places to go. Once we are in the car, I give her our list of places to go. It helps to put them in sequence order. For example:
“First we need to stop at the post office for mail, next we will go to the pharmacy for medicine, and after that, we will go to get groceries.”
If she becomes frazzled or repetitive, I try to show as much empathy as possible and always turn my sentence around to end with something good for her, like:
“I know these are a lot of stops and you are very tired, but if we get all our errands done, we will be able to get home faster so that you can play with playdoh.”
Elaine Towle (Mom to adult son, James): “I definitely use my iPhone as my alternate brain. My son is an adult and lives in a supported apartment in another state. I use the “notes” section in the iPhone and in it I have my son’s complete medical history, his current medication list, and a link to the GI algorithm on the PWSA | USA website. This is an invaluable tool for calls from the Emergency Room, a caregiver, or a doctor’s office. My phone is always within reach – it’s a perfect tool for this.”
Staishya (Mom to Axel, 2): “When it’s time to do Axel’s nightly growth hormone shot, we find it best to show him and explain what’s to come. While administering the GH, we allow him to use a tablet to help distract himself.”
Thank you to all who contributed! We look forward to reading your parenting hacks.
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.