Navigating Parenthood and Embracing Differences with Dan Alu

The disabled population is the world’s largest minority that anyone can become a part of at any time. Yet the disability community remains the most misunderstood minority group.

With roughly 61 million adults and 3 million children in America living with disabilities, why is this still the case? This raises concerns about the lack of awareness surrounding a community that comprises nearly 20% of the U.S. population.

For DriveTime Director of IT Solutions Dan Alu, this reality speaks volumes about the sacrifices and adjustments he has made as a parent to a son with disabilities. He can confidently say that when it comes to disabilities, a one-size-fits-all approach simply does not work. Instead of striving for “normal,” Dan has found the beauty in embracing and celebrating differences and is teaching his son to do the same.

A Complex Medical Journey

James is not an ordinary 5-year-old; he’s a natural entertainer, always looking to make people laugh and show them new things.

“He’s always happy,” Dan said. “He doesn’t complain. He just wants you to laugh.”

His love for Disney’s Cars, particularly Lightening McQueen, has been a constant favorite throughout his childhood. However, unlike most children his age, James has experienced countless surgeries and spent more time in hospital rooms than playing with race cars.

Born with Biliary Atresia, a rare liver disease that occurs in one in 15,000 babies, James underwent his first surgery at just nine days old. The surgery, called the Kasai procedure, meant to create a bile duct system from his intestines. However, the procedure was unsuccessful, and James was given a life expectancy of 9 months unless he could get a liver transplant. So, James was placed on a transplant list.

“It’s a very rare condition, so it’s hard to get specialized help,” Dan said.

By five months, James was matched to a liver and underwent yet another surgery with the expectation it would take 5 hours. It wound up being a grueling 11-hour procedure due to complications from half the liver being dead. Despite the initial relief, James continued to face health challenges, including being immunocompromised, which meant he couldn’t be around other children.

“We were in the hospital for about 4 months straight,” Dan said. “We lived at Phoenix Children’s Hospital.”

This set back his milestones, understandably so, because he spent most of his formative time in the hospital. It was around the 2.5-year mark that Dan and James’s mother noticed there might be more going on than just a few minor setbacks.

Call it a parent’s intuition, but if you have ever watched your child struggle, you know that finding answers becomes top priority. Dan’s intuition proved to be right, and James was diagnosed with Autism Spectrum Disorder (ASD) level one. This diagnosis added another layer of complexity to his life, but it also provided a clear path for support and intervention.

The Role of Support Systems

The last thing Dan wanted was for James to feel different from other children. So, after researching all his options, Dan and his family found a school called Bloom Kidz. Bloom Kidz is a non-profit 501c3 pediatric therapy center founded by a group of parents who were frustrated by the lack of accessible and effective therapy options for children with autism and medical needs.

“I didn’t want to bring him somewhere that felt clinical,” Dan said.

So, not only does James get to attend academy, preparing for school, but he also gets applied behavior analysis, occupational therapy, speech language, and physical therapy all in one place.

This has helped him develop a process and a routine to figure things out on his own and learn to cope with his emotions.

Throughout this journey, Dan emphasizes the critical role of support systems. DriveTime has been incredibly accommodating, allowing him the flexibility to balance work and the needs of his family.

“DriveTime made it so much easier,” he said. “I don’t know if many employers would have kept me. DriveTime wanted to make sure that I was able to find a way to pay for medical bills and have the opportunity to work. So, I’d work my hours, but sometimes I’d make up time on a Saturday because James had a surgery on a Thursday. I’ve been very blessed with the opportunities that I have. I don’t think in any way I’m a victim or my life is difficult. I think it’s just different.”

Lessons in Resilience and Perspective

When asked about advice, Dan emphasizes the importance of being actively involved in your child’s life, especially if your child is differently abled.

“Don’t strive to be a label like normal,” Dan said. “It doesn’t get easier by ignoring it. You need to be involved and engaged in their process.”

By actively participating in his son’s therapy and school lessons, Dan has not only been able to better care for his son but also to understand him more deeply.

“This is the best investment you can make,” Dan said, reflecting on caring for his son. “One day, I may not be here at DriveTime, but I’ll always have my son and he’ll always need me and I’ll always need him.”

So often, parents are worried about their children being perfect that they take the little things for granted. Through this journey with James, Dan has learned to appreciate the small wins and disregard the pressure to live a “normal” life.

“I hate the word normal now because I don’t think it’s fair,” he said. “I think it’s good to be different and understand differences. And I think I hate the word normal because he’ll never feel that, and I don’t want him to think of that word. I want him to think of fun, happiness, engagement, learning, love, compassion, empathy, and the emotions that drive human character, not something that’s a baseline on a piece of paper.”

“Be patient,” Dan said. “I think other parents don’t know what other kids are dealing with. I feel like people lose patience and they don’t realize that they’re looking from their own lens and they have no clue what’s going on in another person’s life. Take a step back and understand what matters because the thing that you’re worried about probably won’t matter tomorrow.”