Image of Kara wearing a pink t shirt, jeans and boat shoes while seated in her Quantum Rehab power wheelchair in front of the calendar she uses to keep her family's summer activities organized.

Summer Survival Guide: Parenting with Disabilities and Planning Ahead for a Memorable Season

Parenting and being disabled share one major thing in common.
Both require planning.
Combine the two-as disabled parents-and it seems even more planning is needed!
Our family of five is ecstatic to embark upon around 10 weeks of summer. Free from homework, reading logs, and checking backpacks, we’re looking forward to sports, camps, and a trip to Texas. As our kids get older, they each have their own interests and schedules! Here’s what we’ve found helps us make the most of summer:

  • A master calendar everyone can see: I got this template from Etsy. You can personalize the bucket list and add everyone’s morning/afternoon/evening tasks. I printed it on blueprint paper through Staples for less than $20. Everyone has their own color and there are different colors for whole family activities or things my husband and I have planned.
  • Decide what accessibility you will and will not compromise: Summer often brings more opportunities for cookouts, camping trips, and travel. As I’ve gotten older, my compromises on accessibility have changed. Everyone has their own threshold for what works for them. I really appreciate friends and family members who give me a heads up about any barriers or challenges I might encounter. This helps me plan and prepare.
  • Listen to your body: It’s ok to need to rest and recharge. Everyone’s stamina is different. Don’t buy into the hype that your summer should look like anyone else’s. I’ve learned my body gives me limited chances to listen up to its need to rest before it takes matters into its own hands and makes me! I’d rather be the one to decide when, where, and how I rest so I try to stay ahead of my need. I’m sometimes frustrated that my head and heart want to keep going but my body cannot. It doesn’t always work but I do try to remember that my body has done some amazing things and will do more if I let it rest once in a while!
  • Be prepared: It’s difficult to be spontaneous with a disability but I still want my kids to experience the fun of living in the moment. I want to stay later for the fireworks, stay at the park even though their Dad got a flat tire on his wheelchair, and swim at their cousin’s house when we thought we were just dropping by for dinner. All of these adventures have been possible because we’ve packed a few essentials in our van, like bug spray, sunscreen, chargers, and a fully stocked first-aid kit. We have a small bag with everything needed to replace a manual wheelchair tire and keep our swim bag in the van until it needs to be restocked with fresh towels 

My drive to plan is helpful but it has a flip side. My anxiety about whether a place will be accessible, how we will make it work, and whether my kids will miss out on something they want to do because so much of the world is still inaccessible is a loud, almost always present voice in my head. Planning feels like a way to quiet that voice. I hope for a day when spontaneity will be more accessible for people with disabilities. Until then-we plan! Happy summer!