Setting boundaries at home and work helps me as a PWS caregiver

Lately, our world has been a little chaotic. We’ve been traveling a lot, hosting family and friends, and I recently returned to work after paternity leave. Our 1-year-old son, Ellis, has started early intervention preschool half the week and daycare at my office the other half. We’re working on getting used to our “new normal.”

It’s only temporary, though. “Normal” is ever evolving. While it’s challenging, my husband, Jamie, and I have managed the curveballs with a little more grace by sticking to the boundaries we’ve established in our personal and professional lives. We’ve found them essential as caregivers to two kiddos with Prader-Willi syndrome (PWS).

Some routines are nonnegotiable

The routines are part of their care plan. Meals and snacks happen within set windows, bedtime is predictable, and every night, once the kids are asleep, we give them their growth hormone injection.

For kids with PWS, predictability, like knowing when food is coming, helps to ease anxiety. We’ve noticed that our 4-year-old daughter, Emerson, is very set in her routines. She leads us to the pantry when she knows it’s time for a snack or to the stairs when bedtime rolls around.

Routines protect us, too. When they hold up, we make fewer decisions on the fly at the end of a long day.

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Boundaries at work

I’ve learned the best way to set boundaries at work is to be clear and transparent. I’m open with leadership about our family’s circumstances, unapologetically standing firm that our family comes first. It’s understood that I will be present at specialist appointments, parent meetings, and special moments, and that, while flexing as needed, I am accountable for delivering quality work. That sometimes means taking a conference call in the car on the way to the PWS clinic.

My calendar is where the boundaries live. Therapy appointments, school meetings, and the morning hours we need for drop-off are blocked like any other meeting. I keep hard starts and stops, too, and I arrive at the office around 9 a.m. after drop-off. Having these conversations at the get-go has made the hard days easier because expectations have already been set.

I do recognize my privilege. A mid-senior role, a manager who listens, and a supportive workplace culture make this easier than it is for many caregivers. A calendar block and a conversation won’t solve everything, but if I were starting with less room to maneuver, I’d begin with those two things and see how far they got me.

Boundaries at home

At home, clear and open communication matters just as much. Before bigger gatherings, we check in with family and friends about planned food and what we need to bring, and we restate what the kiddos can and can’t have, encouraging questions and reinforcing that they err on the side of caution. That helps us avoid awkward moments, meltdowns, and lecturing family members.

Between Jamie and me, the boundary is about who manages what. I usually coordinate appointment schedules, and he oversees the growth hormone injections every night. Alignment on our responsibilities and holding ourselves accountable have helped us split the mental load more equitably.

The third boundary takes the most deliberate effort: protecting time to rest and recharge. Jamie and I check in on our well-being regularly and carve out time for us, which isn’t easy but protects our mental health.

Boundaries can bend

Boundaries and routines don’t always follow the plan. School closures, a sick kiddo, a business trip, or a vacation can throw everything off course. In weeks like those, the calendar blocks and hard stops give way at work. The kiddos can also get frustrated because, at their ages and developmental levels, they don’t always understand why routines have changed.

So, we’re trying to intentionally build in gray areas. Dinner has a time frame, not a set time. On weekends, we let our children stay up a little later (also secretly hoping we get to sleep in a little longer). Predictability matters a lot, but so does a sustainable plan that helps the kiddos build tolerance for when things don’t go as expected. A boundary with a plan behind it bends more safely than one without.

Our “new normal” will change again, probably before I’ve gotten used to this one. Our priorities and boundaries are what let me change with it.

November is National Family Caregivers Month, and it has me thinking about how much of this critical work goes unnoticed. For me, it’s conference calls in the car, insurance calls about prior authorizations, and a calendar block that keeps me showing up for my kids. Though unglamorous and hectic, it’s what lets me show up.

It’s how I ensure I get to dance down the sidewalk with Emerson on one of our walks and hug Ellis at daycare drop-off. For those few minutes, nobody needs me anywhere else.

Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.