Fort Worth, Texas,
27
October
2021
|
11:00 AM
America/Chicago

'Determined Dad' Creates Incredible Halloween Costumes for Son in Wheelchair

Like any 11 year old, Ben Holland looks forward to dressing up for Halloween trick-or-treats. His wheelchair gets a costume too.

Joe Holland sketches out and builds the elaborate designs every October that transform his son’s wheelchair into the vehicle of Ben’s choice. Now in the 10th year of this Holland family tradition, Ben has wowed the neighbors with wheelchair costumes such as the Batmobile, pirate ship, fire truck, Hogwarts Express, an X-wing starfighter and an army tank.

“Ben is no longer known as the little boy with special needs. He’s known as Ben, the boy with the cool costume,” said his mom, Amber Holland.

Joe and Amber say the wheelchair decor serves as an icebreaker to open up conversations with people who might not feel comfortable around wheelchairs or children with disabilities. When Ben goes trick-or-treating around their Burleson neighborhood, they say, the costumes invite people to approach. Kids his age discover that Ben’s into the same things they like… Harry Potter, superheroes, Star Wars.

“A wheelchair can be intimidating for a lot of people,” Amber said. So in 2012 she suggested matching the wheelchair to the costume Ben wore at Halloween. “I asked my husband, ‘Do you think you could build a costume around the wheelchair? That way Ben is just like everybody else.’”

Ben’s story at Cook Children’s began at just two days old, when Teddy Bear Transport brought the newborn for treatment for brain damage that occurred due to lack of oxygen at birth. Doctors initially gave the grim prognosis of only months to live or a persistent vegetative state. But he far surpassed the medical predictions.

Joe recently shared Halloween photos in an email thanking the Cook Children’s neurology staff for their excellent care then and now.

“Yes, there have been some challenging times throughout the years, especially those first two, but this department has been with us every step of the way!” he wrote. “Everyone has always been incredible to our family and has treated my little boy like a superstar! Because of this incredible staff along with many others in the Cook Children’s network, my son is able to experience this kind of joy year after year!”

Just as Joe and Amber hoped, their email made the neurology team smile. We hope you smile too reading about one family’s example of celebration and inclusion.

Cardboard, Duct Tape and Love

Ben isn’t verbal, but he communicates through body language that the people who know him best can read. For instance, he indicates yes and no by the direction of his eyes. His parents describe him as a funny trickster and cartoon fan. He loves Halloween.

Construction of the wheelchair costumes every year involves the whole family. Ben approves the theme. Joe draws up and executes the plan out in the garage. And 9-year-old Lucy and 5-year-old Emma pitch in, painting, in enthusiastic support of their big brother. Joe admitted he’s no carpentry expert; rather, “I’m a determined dad.”

He aims to make the structures lightweight, steerable, and visible with special features such as accent lights and pretend steam from dry ice. The wheelchair rides on a platform base, and it’s configured so that Ben can see out. This year’s costume? Quidditch Stadium (for you Muggles, quidditch is the sport played by witches and wizards on flying broomsticks in the Harry Potter series).

“Joe’s the mastermind… a lot of cardboard, a lot of duct tape, a lot of paint and a lot of love,” Amber said.

They estimate that Joe works 72 hours on each wheelchair costume. Amber remembers when the family built the pirate ship, which was the first year Ben got excited. “He was fully aware of what was going on. He was so pumped,” she said.

Ahead of every Halloween, their neighbors start inquiring about Ben’s costume choice because they’re excited for him. The festivity and fun of his decked-out wheelchair attracts, educates and equalizes. And it prompts people to ask questions about Ben, an interaction that Joe and Amber welcome. The costume takes away the wheelchair’s shock factor, they said.

“I think it’s opened up people’s eyes. You see a child in a wheelchair sometimes, but you don’t realize how much they can do and how much they can convey,” Amber said. “People really have their aha moment. ‘Oh, this little boy has all these diagnoses but he still likes the same things I like. I can still say hi to him. I can still come up and talk to him.’”

Ben continues to receive care at Cook Children’s for needs such as medications to control seizures and pain. His parents expressed particular gratitude to Fernando Acosta Jr., M.D., the pediatric neurologist at Cook Children’s who has treated Ben all along. They shared the progression of Halloween photos to show just how far Ben has come. As his mom puts it: “He’s just a typical little boy really, who happens to have a lot of extra atypical needs.”