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When a wheelchair becomes a magic chariot


Just five years ago, Jessica Bondi and Brian Steinberg couldn’t find a Halloween costume for their son Ben’s disability. Ben has cerebral palsy and has been using a wheelchair since he was 3. Ms. Bondi saw pictures of costumes made by other parents of children with disabilities, but she felt intimidated by the elaborate projects. Ben is also a twin. If he and his brother Nathan wanted to wear matching suits, it was almost impossible to find them in stores.

Recently Ms. Bondi has noticed that adapted costumes, which are suitable for people with disabilities or sensory problems, have become more accessible and affordable. Now 8, Ben can pick out a superhero costume from Walmart, Target, Amazon or other big brand stores and even get creative. This year he becomes a “samurai dragon”, with a ninja outfit for him and a dragon costume for his wheelchair.

“We make sure everyone can transform for Halloween,” said Tara Hefter, a representative of Disguise Costumes, a leading manufacturer.

But many families still prefer the old-fashioned approach — cardboard, glitter, and lots of elbow grease. We spoke to several families about their experiences finding custom costumes for their children.

Finding the right Halloween costume for Julian Boose, a 6-year-old with Snijders Blok-Fisher Syndrome, can be complicated. Due to the rare genetic condition, Julian has significant cognitive impairment and refuses to wear certain clothes and fabrics, especially outfits with buttons, fringes, hoods and labels.

Julian is home-schooled and largely separated from other children his age. But with a little creativity, his mom Samantha Boose said Halloween has become one of the few nights of the year when she sees him next to his peers.

The whole family often makes group costumes that take into account Julian’s sensory problems. When they all dressed up as superheroes, Julian’s Velcro cape was fastened to the back of his pajama shirt instead of an annoying tie around his neck. In 2020 they were all skeletons, but Julian’s pajama suit didn’t have a mask or hood, either of which would annoy him. This year, she found a zip-up fleece spacesuit for Julian, while the rest of the family dressed in space-themed outfits.

Molly Molenaur said her 7-year-old son, Miles, relies on structure to bring some stability to his life when so much can seem overwhelming or uncertain. He likes the comfort of a calendar, she said, and the anticipation of events. However, Halloween was challenging because Miles is Deaf blindwith limited vision and hearing. Television characters or superhero outfits don’t resonate with him because he can’t watch them on screen.

Instead, Ms. Molenaur turned her son into “Light Up Boy” last year, sewing LED light strips into a zippered onesie. Miles could tell when the lights dimmed and changed color, from blue to green to purple. He pumped his hand in the air, dizzy and glowing, glittering down the street.

On a whim, Laura Walker sent an application to the nonprofit Magic Wheelchair in 2017, but she assumed she would never hear from her again. Her daughter, Kendall, has spina bifida and the organization makes and donates intricate costumes for children with disabilities.

Just two years later, the group replied and offered to make the then 8-year-old Kendall’s wheelchair with a “My Little Pony” theme – with Rainbow Dash and Pinkie Pie pulling her chair-turned-wagon down the street. “It was the best time my baby has ever had,” said Ms. Walker.

Now 10, Kendall has outgrown her pony obsession, Ms Walker said; she’s more interested in dressing up as Blackpink’s Korean pop stars. Mrs. Walker will be painting the rims of her daughter’s current wheelchair in bright neon colors for Halloween this year, so they sparkle as she drives through the local trunk.

When Stellan, the son of Noelle and Quentin Delroy, got his first wheelchair around the time he turned 5, they wondered how they would approach Halloween. The family scoured their house for materials — such as moving boxes and Mr. Delroy’s drum kit — that they could use in a makeshift costume for their son, who has cerebral palsy. Since then, they’ve gotten ready for their son’s Halloween costume every fall, running back and forth to the craft store and spending nights in their garage with piles of fabric and felt.

The effort is well worth it, they said, as Halloween is something their son can “totally participate in.” When Stellan goes to school dressed up, “the other kids almost want to be him,” Mr. Delroy said. At 9 years old, he is non-verbal, but they can tell from his facial expressions how excited he is to see each costume. This year Stellan is going to be a punk rocker with a cardboard drum kit that fits over his wheelchair.

Ayah Young’s 8-year-old son Coltrane was born with Joubert syndrome, a rare neurological disorder that kept him in and out of hospitals for the early years of his life. He used a wheelchair when he was younger, which became a challenge for Halloween costumes. So she used cardboard boxes and hot glue to make ‘boxtumes’. One year he was Thomas the Tank Engine, the next he was Marshall from ‘Paw Patrol’.

The highlight of the holiday may have been the reactions of other kids who seemed genuinely jealous of Coltrane’s costumes, Ms. Young said. “Normally, kids don’t know what to think,” she said of his disability. “But on Halloween they were like, ‘This is epic. This is the costume I wish I was in.’”

Coltrane doesn’t currently use a wheelchair, but Ms. Young still makes his costumes to accommodate his sensory issues. She focuses on what she called “pyjama-based” outfits that itch less and don’t touch Coltrane’s ears. It often takes weeks to make the costumes – made little by little, night after night, until she has a finished product. “Everyone deserves Halloween,” she said.

On the morning of Halloween in 2019, Jacob, the son of Rich Kuehn, a 4-year-old with cerebral palsy, came downstairs for breakfast and gasped. “That’s my police car!” he screamed. Mr. Kuehn had placed a sputtering toy siren at his family’s dining table to guide a cardboard police car that could slide over Jacob’s wheelchair. When he thinks back to that Halloween, Mr. Kuehn doesn’t remember the trick-or-treat, but rather watches his son’s merry reaction to the siren.

Today, Mr. Kuehn plans Jacob’s Halloween costumes up to two months in advance. This year Jacob wants to become a soldier and Mr. Kuehn has been working on making a cardboard army tank for Jacob’s wheelchair. Although custom Halloween costumes are becoming more common, he still struggles with finding creative options for Jacob and planning his son’s costume on top of that of his 9-year-old and 12-year-old daughters. But he takes comfort in the knowledge that he’s not the only parent figuring out how to customize the vacation.

“It’s amazing how many more families and children like ours there are,” he said.

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