Josh first, disability second: raising a child with Duchenne and autism

By Rachel Heller

When describing her son Josh, Diane Kirk will tell you five things:

  1. He’s a sophomore at Arundel High School.
  2. He loves music.
  3. He has a knack for cooking.
  4. He exudes kindness.
  5. He has Duchenne muscular dystrophy and autism.

If you want to see Arundel health teacher Diane Kirk smile, ask her about Josh, 16.  With a grin strewn across her face and a twinkle in her eyes, she paints a kaleidoscopic picture of the motivations and fascinations that intermingle to make up her son. Kirk is truly in her element when speaking of Josh. She wields a lively tone, with speech capturing the beauty and grandeur that epitomizes the joys of motherhood.

As his mom has attested, Josh is an ambitious kid with a promising future sprawled out before him. Nevertheless, Kirk has learned that erasing his disabilities from the picture is not optional.

Red flags started popping up at an early age in Josh’s development, which Kirk saw as the first indications of autism and Duchenne taking hold.

“As he started to develop, he just seemed to be behind physically. He was supposed to be sitting, but he wasn’t sitting; he was supposed to be crawling, and he wasn’t crawling,” she recalled. “He wasn’t really talking. He was babbling and smiling and interacting, but not talking. In fact, I don’t think I heard him say mom until maybe he was four.”

The doctors weren’t convinced, sweeping away her concerns. However, Kirk’s pestering suspicions refused to subside.

“They gave me the, ‘Oh, new mom, it’ll be fine, kids develop at different rates, some kids don’t crawl,’” she said. “Even though I was sure in my gut that something wasn’t right.”

At two years old, Josh was diagnosed with Duchenne muscular dystrophy, a genetic and degenerative muscle disease in which the muscles can’t make protein for muscle repair.

Three years later, he was diagnosed with autism after being tested for special education services in school, a diagnosis that Kirk found to be an easier pill to swallow after handling Duchenne; she knew they were up for the challenge.

“They give you this test that you have to fill out at home,” Kirk explained. “And my husband and I literally sat at the dining room table, we each had a test, we were going down it and checking off, ‘Yup…yup…yup…yup.’ By the time we got to number ten, we just looked at each other like: ‘He’s got autism.’”

Over the course of Josh’s upbringing, Kirk has come to terms with the miscellaneous difficulties created by Duchenne and autism. She states that planning for the future has proven to be the most significant obstacle. Josh can attend college, but he can’t go without an aide.

“There’s some challenges in that this is very different from other kids’ realities,” Kirk admitted.

Thus, a crucial question arises: how does one define their present reality?  The Duchenne and autism may be a key component of their lives, but Josh is not just his Duchenne and autism. Likewise, Kirk is not just a mom with a son possessing two disabilities.

Lexi Galuska, a 12th grade Arundel student who doubles as Josh’s tutor, is one of the many individuals who have affirmed this notion. Galuska is a member of Step Up, a student-founded club in which Kirk is the adviser. The club’s mission statement is “To promote strong peer relationships in order to prevent bullying.” Kirk is also the adviser of another student-founded club, Seeking Smiles.

“[Seeking Smiles] gets more into how you can find happiness, but I think that reflects on her character and how much she cares for the students,” she said. ” Kirk is one of the most caring teachers that I know at this school.”

Jenny Madden, a physical education teacher at Arundel and Kirk’s close friend, fervently vouches for Kirk’s character.

“She’s a lover. She’s a lover of all,” she claimed. “She’ll do anything for anybody at any point, she’ll give you the shirt right off her back.”

Madden sees much of Kirk reflected in her son, possessing numerous positive qualities instilled from his mother.

“I think that he’s a mini her,” she explained. “I think that he also sees the differences in people, and that’s okay with him, and I think it comes from Kirk. I think that she teaches him that just by her actions.”

Every Thursday, Madden eats lunch with Josh. Their conversations range from what he’s doing next weekend, to what his interests are, with Josh sprinkling in facts about what they’re feasting upon at varying intervals.

“He’s a foodie and he likes to eat it, but he can also tell you the fourteen different types of cheeses that were put together to make this one little piece of this meal,” she recounted in awe. “He’s a genius in those fashions.”

Besides the culinary arts, Josh’s most beloved passion is music.

“I definitely like to listen to music for the art, the poetry,” he explained. “I don’t just listen to music; it’s pretty much a way of life for me. I’m old school about buying the records because I don’t use Spotify or anything. I like to buy it physically, like on CD or vinyl.”

Josh describes his music taste as eclectic. He’s an avid fan of Radiohead, yet also dabbles in underground indie and rock bands, while still enjoying folk music and rap.

“I’m actually friends with the guys from a band called Dr. Dog, who are out of Philly,” Josh noted with pride.

Kirk can confirm his aptitude for music and is a zealous supporter of his ambitions.

“He loves music, he could have a career working for music companies,” she explained. “He has his own music channel where he reviews music.” Josh’s YouTube channel, under his name Joshua Kirk, currently boasts over 3.5k subscribers. Each episode, he provides critiques on a diverse array of albums from the likes of Green Day and Modern Baseball.

The clouds of Duchenne and autism may always exist in Kirk’s life when it comes to her son, but for now, she says she’s living in the moment, their present reality.

“He’s just so kind and so sweet, and I do think that’s a common thing among kids with disabilities. I think there’s a natural kindness to them,” she said. “He’s a happy kid.”