How a Acton ‘dragon mom’ adds life to her child’s days
Parents like Laura Will have had to pivot their expectations and accept a role they did not anticipate.
A new film shows what a 5-year-old Alden Nicholson cannot say for himself: Skiing is bliss.
The Acton boy is coasting down a snowy Vermont slope with a wide grin. His mom, Laura Will, controls his speed from behind an adaptive apparatus known as a sit-ski. Multiple camera angles provide proof of the delight that she cannot see firsthand.
“We really wanted to capture his grunts and squeals and general enthusiasm, which you couldn’t really do unless you’re way up there with him,” said Harrison Buck, director of “Dragon Mom,” a short documentary that’s making the rounds at film festivals. Buck held a camera while skiing alongside the mother and son and used a drone and a GoPro to record the joyful sight.
The scene is significant because Alden, now 6, has polymicrogyria, a severe brain malformation that limits his ability to speak, move, and swallow. It also limits his life expectancy, but, Will says in the film, that doesn’t mean he has to live a limited life: “He deserves to fly down the hill in a sit-ski with his sister if that’s what he loves.”
‘Bring the fire’
Filmed over the course of six weeks, the documentary provides a glimpse into Alden’s world, as he communicates through a device; plays with his dog, Buoy; and navigates a playground. Will’s husband, Dave, and their two other children also appear in the film.
Based on a term coined by Emily Rapp in a New York Times essay, the film’s title refers to a parent who will outlive her child. These parents have had to pivot their expectations and accept a role they did not anticipate.
Rather than focusing on long-term goals, such as getting their child into a good college, these parents are hypervigilant about the present and their child’s day-to-day survival. Consequently, Rapp wrote, they become “fierce and loyal and loving as hell.” Since reading the article, Will has embraced this concept and wears a dragon and egg necklace to “protect myself, to garner strength, and bring the fire,” she told The Bridge.
She has directed her energy toward getting Alden included in fun activities, such as a recent kindergarten field trip. Her advocacy for more inclusivity in the design of Thoreau Elementary School playground is mentioned in the film. Formerly a geriatric nurse practitioner, Will works part time as a story curator for Courageous Parents Network, a non-profit helping caregivers of medically complex children, and she’s a member of Acton’s Commission on Disability. The family moved to town when Alden was 3 years old because of its integrated learning programs.
Reframing the discussion
Since receiving Alden’s diagnosis when he was 4 months old, Will has been working toward using less ableist terminology. For instance, she prefers to say “he is a person who lives with a disability” versus “a disabled person,” and has “special rights” rather than “special needs.”
Such language is why Buck turned to Will, a longtime friend, for his idea of making a film about sit-skiing and “the healing nature of the outdoors.” She told him how skiing with Alden shifted her mindset from feeling like she was in a tragedy.
“When you first are told you’re going to have a severely disabled child, there are so many different dreams that die,” she said, “and then you have to figure out how to remake them.”
Will hopes “Dragon Mom” will similarly change some perspectives, primarily that a disability does not create “a less-than existence.” While many community members are friendly to Alden as they get to know him, “I do see looks of pity around town,” Will said. “I do see parents telling their kids not to point.”
The 20-minute film gives viewers a chance to “see his joy in the morning when the sun hits his face and that initial morning snuggle. All of a sudden, he’s not the disabled kid,” she said. “He’s just this sweet boy who lives with a disability.”
“Dragon Mom” won the Jury Award for Best Short Documentary at the Vero Beach Film Festival in April and will be shown at the Umbrella Arts Center on November 14 at 4 p.m.
