Robyn Bombard

The power of a mother's love

Kate Hanzalik

Today, Robyn Bombard looks back on what she calls “a crazy, stressful time” in her life, and perhaps sighs with relief. This former high-powered media executive could handle the stress of her job with ease, but in 1998, shortly after giving birth to her son Parker, life became tumultuous. “I noticed he wasn’t hitting some of the markers that babies hit. He wasn’t eye tracking. He would go rigid when I would take him out of the car. He wouldn’t sleep through the night . . . often screaming. I was losing it.” His confounding behavior became the catalyst for change in her life, her son’s and for the Syracuse community.

This was the early days of Google so little information was available. She arranged for occupational therapists and speech therapists into her home. Yet after a year, he still couldn’t crawl, walk, or speak. “No one could give me answers,” she said.

After analyzing Parker’s doctor bills, she noticed he suffered from the same ailments again and again. “I said [to the pediatrician], ‘Something is wrong.’ They thought I was just a nervous first-time mother.” She was in disbelief. “So, I left there, cried my head off in the car, and then proceeded to a different pediatrician where I saw the same doctor all the time.” This was her first of many lessons in perseverance.

By the time Parker was two, she learned about Fragile X Syndrome (FRX) a genetic mutation that impacts a person’s intellect, behavior, and ability to learn. Parker’s self-harming behavior, such as head banging, was just one symptom. She requested a diagnostic, and the results were positive. This meant her son would never drive, never live alone, and, like others with FRX, Bombard said, “They get to a certain age and that’s it physiologically, it’s a neurological disorder causing a learning disability.” She said she was “a mess” when she found out. “This was obviously life changing for our family.”

Taking action

“Like all moms, there’s no manual. For most of us, we’re mama bears, we’re protective,” she said. “But when you’re in a situation where you have a child with special needs, it’s a hundred times harder because you’re navigating the healthcare process, insurance and government forms, you’re navigating the school system.”

To accomplish this huge undertaking, she needed more time to focus on Parker. She stepped down from her role as vice president at WSPX-TV and became a commercial realtor, which allowed for a more flexible schedule.

With this diagnosis, she sought out the best education for Parker. This led them to the innovative Pre-K school, Jowonio. “It was a huge turning point,” Bombard said. “He learned sign language, which helped him to tell us basic needs; music was part of his daily learning.” They put him on a daily schedule, an essential for people with FRX, and things started to improve slightly.

One day, when Parker was almost six years old, we were driving in the car. Suddenly, he said, “Hello, Mama.” I almost drove the car into the ditch. “I started crying,” she said. “I was like, what did you say?! Just to hear his voice for the very first time, INCREDIBLE!”

While Robyn and Parker’s struggles to communicate seem to be a problem of the past, everyday interactions with others are challenging. This challenge has become an opportunity to educate. “It is difficult for others to understand if they don’t have a child in this boat. Please don’t talk about a person with special needs in front of them, they CAN hear,” she said. “I realize it can be awkward at first but include them in your conversation.”

Such lack of understanding even impacted his K-12 education. At the onset, the Fayetteville-Manlius (F-M) school district was difficult in terms of their special education department. “We struggled with that for a long time, and Parker’s dad and I finally went higher up in the school system, and we got full-day kindergarten.”

Bombard praises the therapy Parker received while at F-M, noting that, “These ladies (therapists and special education teachers) hung right in there with us through the years. We have been very fortunate to have had some incredible mentors as well!

Today, Parker is a high school graduate. He recently moved into his own house and has a live-in support person. He is now doing his own laundry and grocery shopping. He’s enjoying his freedom.

But the social isolation is still there.

“One of the biggest things is lack of a social circle,” she said. “Parker will look out the window and ask me, ‘What friends, mommy? What friends?’ And it breaks my heart . . . I don’t care who you are. All of us need to feel needed, wanted, loved, cared for; friends to do stuff with.”

A vision for the future

Throughout her journey, Bombard learned much more can be done in the Syracuse area to support young adults with disabilities. “These people are productive, they want to help, they want a community, they want to earn money.” Local dayhabs, working from a 1960s model of operation, lack productive activities. She realizes that bigger, more metropolitan markets offer more creative, cutting-edge services and teaching strategies, but she believes that Syracuse can be just as innovative.

“I would love to see change,” she said. True to her word, she is working with other parents to develop a community center for people with disabilities, much like senior assisted living. They need to find the right leadership, a strong board and a strong executive director who lives on site. They could use any help they can get, so please email her if you’re interested, robynbombard@localsyr.com. Mail to: RobynBombard@localsyr.com“There is strength in numbers,” she said.

On a positive note, there are many CNY Agencies to help you navigate the systems that have improved immensely over the last decade, as well as technological advances to help smooth the way. In addition, early intervention is key to lead to better outcomes for your child. “Today Parker is doing well, a complete joy to be around with a heart the size of Chicago,” she said. “He teaches me every day how to be a better person and see the world through his lens. Remember that faith and your love for your child will pull you through and give you the strength to persevere.” SWM

Helpful Links:

For more information about Fragile X, please refer to the Centers for Disease Control and Prevention website: https://www.cdc.gov/ncbddd/fxs/data.html#:~:text=Studies%20 estimate%20that%20between%201,have%20a%20fragile%20X%20 premutation

To learn about Jowonio School, please visit, https://jowonio.org/ For more resources, refer to the Gebbie Speech, Language and Hearing Clinic at Syracuse University at https://thecollege.syr.edu/departmentcommunication-sciences-disorders/gebbie-speech-language-hearing-clinic/