Anne Fricke

Meeting the Needs of Siblings, Prader-Willi Version

By Anne Fricke

When we learned we were pregnant with Freya’s little sister, we were understandably concerned. Freya was 7 months old, and we were less than 4 months into our PWS journey. Between doctor appointments, fighting for growth hormone, 5-hour trips to UCSF, trying to find therapists in our rural county, and just managing having a child with additional and unique needs (like the hours of pumping and trying to get her to gain weight from a bottle because she was too weak to suck from me), we weren’t sure where another baby would fit in. We decided to continue with the pregnancy and have been grateful every day since.

I can tell you all the ways Rona has benefitted Freya—like companionship and motivation. Rona has been an example for Freya in movement (Freya didn’t walk until 2 1/2 years old, and that was only after watching Rona begin to maneuver around the house on two legs), art, speaking, and creativity. That’s not to diminish what Freya has brought to the relationship. She is her own creative, kind, and interesting person. They fight and argue and get on each other’s nerves, but they also are each other’s companion, teacher, and friend.

This post is a request from a podcast listener. How do I handle Rona’s needs? What information about Prader-Willi Syndrome have I given her, and when?
I’ll tackle the second question first:

All the necessary information from a young age. Rona attended most of Freya’s therapy sessions for many years until Freya started school. They used to play “speech therapist.” Rona would ask Freya to say a specific word like “dog” and then help her pronounce it correctly. The cutest detail is that Rona had a lisp for many years, one she eventually grew out of. Rona is still her teacher of movement. As an aspiring contortionist (10-year-olds, right?), she moves and twists her body in various poses. Freya, her companion in gymnastics, will sometimes take direction from her. The result is, of course, a beautiful thing to witness.

So Rona has always known about PWS. She has always known that her sister needs extra assistance, that at times she needs extra space, more of our attention, and a lot of patience. For a brief period, Rona would have to secretly eat her extra calories. That never felt like a healthy approach, so we started just being straightforward with Freya that Rona needs more food for her body. So far, Freya has handled it well enough that Rona doesn’t typically have to hide when she has more food.

We have always been honest with Freya about PWS, so Rona also knows this information. But there are times when I have pulled Rona aside to remind her of the challenges of PWS. To remind her that Freya has challenges she will never have, and while some things may seem frustrating, they are hopefully not unfair. As I learned from a fabulous PWS mother and advocate, Lisa Graziano, “…fairness doesn’t equal the same. It’s fairness for that person at that age at that developmental stage of their life. That’s what is fair to that person; but it’s not in comparison to anybody else.” (Walking with Freya podcast, episode 42).

Navigating their sibling dynamics is not a well-worn path for us, not one from which we have cleared all of the brush and obstacles, but it’s the path that feels right to us.

As for meeting Rona’s needs, we try to ensure she has her own space (until this past summer, when their older sister went to college, they shared a room), her own time to shine, and receive our undivided attention. It has gotten easier as they have gotten older. Moving them into their own rooms was a critical part of that agenda. They are both in gymnastics class. Partly because Freya wants to join in and be a part of what Rona and her peers are doing. Rona is quickly excelling in gymnastics and working hard to do so, and we are honoring that. I am shifting gears with Freya to hopefully find a dance class (because she loves dancing and is quite good at it).

Rona sometimes has sleepovers at friends’ houses, and when she has friends over, I try to keep Freya distracted with other things. Rona eats when she is hungry (especially now that she is constantly working out and flipping her body around), and I make sure to have one-on-one time with her before bed.

I also see Rona trying to fix things when Freya starts getting upset, or I start getting upset because the monumental stubbornness of PWS rears its frustrating head. Just this morning, during a conflict with Freya in which Rona stepped in to find a solution, I told her, “I love you, Rona, but you don’t have to fix this. I can handle it.”

So we don’t have it perfect. Probably never will. But it is essential that Rona and Freya both have time with us without the other. Important that they both have moments to shine and moments to witness the other’s brightness. I talk regularly about people and bodies having different needs, and I stand by that. I am trying to raise them with an understanding of compassion and acceptance for each other’s needs.

Sometimes there seems to be a societal inclination to feel bad for the sibling of someone with a disability or special needs. I do not subscribe to that tenant.

Some faiths believe that we choose our family. Whether we choose our family or not, a loving family is nothing to sympathize over. Rona is a blessing to Freya, and Freya is also a blessing to Rona. They both have lessons to teach: empathy and compassion, acceptance and confidence. They both struggle in their ways, but it is not a setback to have a sibling with a disability or special needs. It is a jump forward to being a compassionate, helpful, and kind human being.

About the Author

Anne is the founder of BREATHE and mother to three daughters, one of whom has Prader-Willi Syndrome. Early in her journey as the mother to Freya, she was inspired to seek out and create the community she needed. Listen the Walking with Freya podcast episode with Lisa Graziano here. 
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