Many of our families are blessed to have grandparents in their lives. Some grandparents live close by and are able to help with the practicalities of raising someone with PWS, like doctor appointments, therpay visits, and babysitting or supervising so the main caergivers can have a break. Other parents live far away but find those connections on video calls and visits. Whether grandparents live close by or connect from afar, we are grateful for the support and love our grandparents bring to this journey.
We reached out to the community of grandparents to share their experiences using the prompts:
- How do you support the parent of your loved one with PWS?
- How do you spend time with your loved one with PWS?
- What brings you joy as a PWS grandparent?
- Any advice for grandparents of loved ones with PWS?
Below are how some of our grandparents responded.
To all of our grandparents on this upcoming Grandparents Day – we thank you for your love, your compassion, your support, and for continuing to show up in our lives. Our lives are better because you’re here.
Community Responses:
Submitted by Cynthia, Calvin’s grandmother:
I visit as often as I can and follow the lead of the parents; they are intimately involved on a day-to-day basis and I recognize that things change between my visits (portion sizes, timing of meals, do’s and don’ts, etc.). When I’m in town, I babysit my grandchildren, so the parents can go out and have adult time, I do some of the school pickups to relieve that burden from the parents, and I try to educate myself on PWS research so I can best support the family.
He loves doing role play; imitating characters he’s seen on Nintendo or in a movie. We sometimes spend hours role playing different characters and different scenes. He usually has a storyline in mind, and I might ask some prompting questions to give him ideas for the next scene. He loves to dance, so we have a dance party, playing music that he likes and showing each other different dance moves. He enjoys going to playgrounds; sometimes he wants me to play with him, sometimes he plays with other kids. We have great one-on-one conversations on the walk to school, or on the walk home. One-on-one talks (without being rushed) are wonderful. Of course, sometimes it’s just “downtime” and he wants me to watch him playing Nintendo or we’ll watch a movie on the couch.
(What brings you joy?) To see how far he’s come from the initial diagnosis….we didn’t know what the future would hold for him, but he has surpassed what we thought was possible. He’s an Orange Belt in Taekwondo!
Ask your daughter/son how best you can help them; follow their lead and instructions. Keep your grandchild busy with activities, so they don’t think about food. Ask questions of your grandchild, vs. giving them the answer. “Well, what do you think? How would you handle that situation?” and be patient when it takes them a little bit longer to come up with the response. This will help them develop critical thinking skills.
Submitted by Donna, grandmother to Samuel:
I watch Sam and his brother when my daughter, Katie, needs to work and I go to national conferences to learn the most recent strategies and medicines to come.
I spend time doing crafts and reading with him and go to museums with him.
Sam is such a loving and smart young man. He has been through so many obstacles and now he is such a strong boy.
Advice – Always ask a parent before you do things for the grandchild with PWS. Always advocate and get involved. It’s easy!
Submitted by Ann:
Our 36-year-old granddaughter is a joy to talk to on the phone. Each summer she stays with us at our cabin. She brings us good luck when we go fishing. We play cards too. She is such a joy!
Submitted by Lisa, grandmother to Axel:
My Grandson Axel is 4 and since I don’t live close, we spend a lot of time on FaceTime talking & laughing and he loves showing me all of his favorite toys & his best dance moves! In person My favorite thing is I love to watch him dance, and I especially love it when he grabs my hand to join in!
He is such a joy and a blessing. He has brought so much learning and patience to my life.
My advice would be to live in the moment with your grandchild and continue to teach & be taught. I feel like I support his parents by listening, understanding, and educating myself so I know more of what they go through on a daily basis and letting them know I’m here anytime for anything. Just knowing I’m here I think means everything to them.
Submitted anonymously:
Our three-year-old granddaughter, Nora, is the happiest child we know.
She loves hugs, books, playground slides and Ms. Rachel. The only thing that we can definitively say she dislikes is socks.
She is visibly thrilled when she spots a familiar face (even on a cell phone screen), and so generally joyful that she’s often the most popular schoolgirl, physical therapy client and story time listener in the room. Her superpower may come, in part, from the scores of educators, therapists and medical caregivers that her parents have enlisted for Nora since she was diagnosed with Prader Willi syndrome shortly after her birth. And in part, surely it comes from amazing parents helping her navigate the challenges of PWS.
We feel tremendously fortunate to see Nora growing stronger and more independent by the day, giving us confidence that she’ll continue to thrive in her happy life.
Submitted by Val, Josie’s grandmother:
Oh, sweet Josie, my precious granddaughter, is a radiant burst of joy! Her pure, heartfelt happiness lights up every moment—she’s truly a blessing and a little ray of sunshine! A few weeks ago, I had the delight of visiting Josie and her wonderful big brother, and our favorite memory was splashing around in the pool together. Josie brings such a fun, vibrant spirit wherever she goes, and we couldn’t stop giggling over the silly games we played! I also want to share my deep admiration for my daughter, Melanie, who faces the challenges of PWA with such incredible courage, strength, and determination while raising Josie on her own these past few years. Her boundless love and compassion for Josie are nothing short of extraordinary. I’m endlessly proud of Josie’s amazing tribe—Melanie, Henry, and Dave—whose love and support make such a beautiful difference!
Submitted by Melissa, grandmother to Kynlee:
We love planting a garden together every spring. She loves watching her veggies and berries grow! She also loves picking them and washing them. We have some of the best memories here!
Submitted by Flora, grandmother to Marisol:
Marisol loves to plant veggies and flowers and makes bracelets. Loves doing puzzles. She is so sweet & kindhearted. We take her on road trips & she loves it.
Submitted by Michael, grandfather to Olive:
We have been so inspired by how great our daughter and son-in-law have provided love and care to our granddaughter who was diagnosed 6 months ago. They have embraced and been embraced by the PWS community all to the benefit of our granddaughter. We have done our best to educate ourselves, provide support by both visiting every month and being a sounding board when requested. We love visiting. Our favorite activities with Olive are to read to her, sing and walk with her. My favorite activity is doing things that make Olive smile and laugh. Just being with Olive brings us joy. She has a marvelous temperament. My recommendation is for grandparents to be as engaged as they can be but certainly to follow the lead of the parents. We feel very fortunate that Olive has great parents and a loving PWS community.
Submitted by Linda:
It’s great to have the opportunity to support our son and daughter-in-law in the support of our 5-yr old PWS grandson. We live close so that’s a blessing. We help with PT appts and respite nights for the parents to have a date night. We try to spend special time with the siblings (our other grandchildren) so they can have treats not offered normally. It’s a special way to support our kids…not what we planned but that’s okay. God will provide what we need.
Thank you to those who shared their perspectives on the grandparent experience. We wish all of our grandparents a very Happy Grandparents Day!
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.