Growing Up Alongside PWS: The Hidden Struggles and Strengths of Siblings

Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares insights on supporting siblings and recognizing serious mental health challenges in her new guide.

Raising a family is never easy, and parenting a child with PWS adds extra layers of complexity. Because of the complex symptom profile of PWS, people with PWS require significant time and attention from their parents and caregivers on a daily basis, which often translates to less time and attention for the siblings.

Raising my own daughters, one daughter with PWS and one without, I was often concerned about how PWS would impact my youngest daughter (without PWS) in terms of her mental health and coping as well as her relationship with food, which was often tied to stressful interactions related to her sister.

I could see in her face and in some of her behaviors that stress and anxiety were brewing. Things were particularly tough during the preteen and teen years for both of them. Granted this is a difficult time for most kids, but the challenges of PWS were heightened during those years when the intersection of PWS and puberty/hormones hit hard.

During her teen years, my younger daughter often did not want friends over the house, fearing they would witness a PWS meltdown.

Another time my daughter was in high school trying to focus on a Spanish test, and she could hear her sister (with PWS) loudly crying and making a ruckus down the hall. I wondered and worried how my youngest daughter would manage during that time, and if, once she left home as a young adult, she would ever look back. Would she ever want to have a relationship with her sister?

Leaning on my own experience as a clinical psychologist, I thought it would be important to explore this topic in a systematic way. The goal was to better understand the lived experiences of siblings in families like ours so that we can better support parents and siblings through this journey. With support from FPWR, I conducted a study focused on in-depth interviews with 25 siblings of people with PWS. 

Many siblings I spoke to in the study shared they felt like they had to walk on eggshells, adjusting their own emotions and behaviors to avoid triggering an outburst. Some felt overshadowed, as their parents’ time and energy were often understandably consumed by managing their brother or sister’s PWS needs.

Other siblings shared experiencing emotions such as fear, anger, or guilt—emotions that often went unspoken. And yet the study interviews revealed that amidst the struggle there was also resilience. Many of these siblings, from what I could see in the interviews, developed remarkable emotional intelligence, patience, and compassion. While some also resented their circumstances, as they grew older, many found meaning in their experiences.

One of the biggest takeaways from my research is that despite the challenges, these siblings can do well — but they need support. Parents can help by acknowledging their struggles, giving them a space to express feelings (even the negative ones!), assisting them in developing a healthy relationship with food, and ensuring they have their own opportunities to be seen and valued.

 Although there were definitely some rough patches, I have seen my daughter grow and develop into an intelligent, brave, thoughtful, non-judgmental, and caring young woman, which I believe is in part related to experiences growing up with her sister with PWS. 

If you are parenting both a child with special needs and a sibling who is impacted by their challenges, know that you are not alone. Your child with PWS’s struggles will likely impact their sibling’s experience, but they do not have to define or limit them.

With a balance of support, love, and open communication, these siblings can emerge not just okay—but strong, compassionate, and resilient. 

Download the Sibling Support Guidebook to see the full study findings and to better understand and support every child in your family.