Halloween: Joyful Crip Time
By Laura Will, Rare Mom raising both well and medically complex young children
Alden, Laura’s medically complex child, excited about his newly crafted Halloween costume: Moana’s sailboat
The term “crip time,” upcycled from the word crippled, captures the ways a disabled body moves out of sync with linear time, inaccessible spaces, and our culture’s compulsive productivity. As a caretaker, I often live in crip time—refilling syringes, searching for the elevator, waiting on hold for the doctor, the pharmacist, the insurance agent, the school nurse. It’s impossible to clock my hours as a disability parent, but I know that everything simply takes longer. Though I’m not disabled myself and hesitate to use any derivation of the word crippled, “crip time” perfectly describes the measure of time it takes to make Alden’s Halloween costume.
Historically, on Halloween our family chooses a uniting theme, and we all dress up together. I’m thrilled that our eldest, Hadley, is still excited about the prospect of dressing up with her mom, dad, and little brothers. It helps that I let her take the lead. Last year, she wanted to be Skye from Paw Patrol, so we all became pups. This year, she is Moana, and the rest of us are taking on supporting roles around her lead princess character. It’s fitting that Moana’s story unfolds at sea—because I’m certain that, if Alden could choose any costume, he’d want to be a sailboat.
Every year, during the first week of October, a reminder pops up on my phone: Start making Alden’s Halloween costume. For most of the family, I can simply click “Add to Cart” and the outfits arrive ready to wear. Alden’s costume, though, comes in bits and pieces—yards of thick felt, a glue gun, bamboo dowels, zip ties, Sharpies, and (my 11 p.m. stroke of genius) a dark bronze shower rod for a mast. Soon, boxes pile up and overtake a corner of the mudroom.
The next step is choosing which piece of equipment we are going to build on. The electric wheelchair offers Alden autonomy to move independently with a joystick, but limits access because it cannot handle even a 4-inch sidewalk lip. The gait trainer would be amazing physical training, but he would fatigue too quickly. So, we opt again this year for the manual “push” wheelchair. His left arm does not have the strength to propel the left wheel; so we will push him, stroller style, and lift the wheelchair up steps.
His wheelchair is about forty pounds of metal and cushions, uniquely configured to support his body; and it’s a perfect scaffolding for Moana’s catamaran. On a Saturday morning in mid-October, we leave the breakfast dishes in the sink and open up the boxes of materials. Creative juices flowing, we zip tie the brown shower rods to the headrest, forming a mast and boom, and drill holes through them for the rigging. As the boat takes shape, Captain Alden bounces in his activity chair, so thrilled that he scooches backward across the room.
Next, we cut out wheel-sized circles of aqua felt, and Hadley draws blue squiggly lines across them. She is enthralled. As we tie them to the wheels, she asks if she can help push Alden’s wheelchair on Halloween night. She says it will look like she’s sailing the boat with him—and I feel like Mother of the Year. We’re ahead of schedule, we’re crafting, and Alden’s costume is genuinely cool.
It can be a challenge to find activities that engage both Alden and Hadley - but we have struck gold with costume boat building. Part imaginative play, part crafting - this is so much what Hadley and I both love to do. We’re all energized by the idea that we’re building something together, for Alden.
Years ago, imagining parenthood, I probably hoped to be the kind of mom who crafted her children’s costumes from scratch. And while I appreciate the artistry in every handmade creation, I now recognize how much simpler—and often less expensive—a ready-made costume can be. I can say with certainty that without Alden’s unique costume needs, I’d never find the time to measure, cut, and glue. But this crafty iteration of crip time feels like an absolute gift.
Usually, my experience of crip time demands patience— deep breaths and the management of frustration. But this October, these extra minutes and hours are bursting with creativity and love. It’s time-consuming—and what a joy it is.
On Halloween night, we will walk and roll through our neighborhood. Alden will sail his way along the sidewalks, to the tops of the driveways, to the bottoms of the steps. There, we may pretend the waters get too shallow for his vessel, and he will watch as his sister clambers from the back of her boat up to ring each doorbell. Trick or Treat. Their peers run across front yards, cut through wooded areas between houses; but we will turn back down the driveway — together, in time.
About Rare Resiliency:
Rare Resiliency is a monthly column written and/or curated by Laura Will. This column explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy.
