Mom became a warrior for taking on apraxia

Born in the wrong decade, this Generation Y-er is a self-proclaimed hippie-naturalist with a rebel spirit whose nonconformist determination is helping children with an unfamiliar disability in Jacksonville and beyond.

It is just these characteristics that have helped Jacksonville native Michelle Leigh down a difficult journey that started with questioning why her son, Ryder, was still not talking as he approached age 3.

She wasn't new to being a mom and knew the typical child development stages, having raised a daughter, Sasha, who was already talking and reading simple sentences at 2 years old. Yet when she kept questioning her son's silence with Ryder's pediatrician, the response went from he's just developing slower to "it's your fault because you do all the talking for him."

Beyonce's "Sasha Fierce" has nothing on Leigh as she never faltered during an 18-month fight to find out what was happening to her son, a strong example as to why Margaret Mead said, "I do not believe in using women in combat, because females are too fierce." Ryder was already going to a Montessori school where the children receive intense, hands-on learning, when Leigh shared her frustration with one of the teachers there.

"I knew it wasn't an intelligence problem because I could point to a color and he knew what it was but couldn't say it," said Leigh. So, the teacher set up a speech test from an outside source with the results coming back as "failed" and "not enough to test - call me."

The diagnosis was a fairly rare and mostly unknown disorder named apraxia. It is not so much a speaking disorder as it is a neurological motor planning disorder where the person knows exactly what is going on around them and what they want to say, but the breakdown between the brain and the mouth prevents them from doing so. It's similar to when a person has a stroke and loses the ability to speak, then has to go through extensive speech therapy to regain some of their ability to voice words, with each being a concentrated effort.

Leigh confirmed Ryder's diagnosis with additional testing at the Coastal Therapy and Learning Center and although the fight to find out what was wrong with her child was finally solved, the battle to help him had just begun.

NO UNDERSTANDING

That's when Leigh's hardest and most challenging start of the journey to understand apraxia and how she could help her son began. "No one in Jacksonville seemed to have a real understanding of apraxia at the time and so I realized if I wanted to help my son I had to take it upon myself to learn as much as I could and keep going," said Leigh.

Leigh spent thousands of hours researching on the internet, reaching out to professionals to find needed therapies and agencies that help children with disabilities. Leigh soon discovered she was dealing with a huge maze of "no's" and "don't know's" all because this disorder was being classified as a "habilitive" or developmental delay problem. This meant insurance companies didn't cover it, citing that the child never had the skill, so he can't receive rehab to regain it, or he will grow out of it, meaning it's a school system issue. Government agencies were little help with too few physical and speech therapists available, 10-year wait lists to receive support, and help being based on income level and type of insurance.

Beyond frustrated, Leigh asked herself, "Are you going to be the parent that sits back and waits for the change or are you going to be the change?" She discovered the website for the national nonprofit CASANA, the acronym for the Childhood Apraxia of Speech Association of North America, which has become her lifeline for information, support and scholarships for speech therapy. CASANA's website, Apraxia-Kids - Every Child Deserves A Voice, is like a second family to her, sharing with other parents and having questions answered anytime by someone who understands exactly what she's going through.

'SHOWN THE LIGHT'

It was her first glimmer of hope and a light to guide her, reflecting the line from a favorite song, "Scarlet Begonias," by the Grateful Dead: "Once in a while you get shown the light in the strangest of places if you look at it right." These words reflect Leigh's determined spirit and that if you keep pushing, you will find answers.

Although a hardship for her family, Leigh promptly took Ryder to Pittsburgh to see a specialist affiliated with CASANA, and met the staff who are researching and helping families whose children are struggling with apraxia. "I finally stood before someone who understood how I was feeling and offered a wealth of information to help me anticipate the road ahead," said Leigh.

Leigh was so impressed with the devotion of the CASANA staff and learning that about 85 percent of funds raised goes back to the families for speech therapy grants, to attend the annual national conference and to purchase iPads for the children to help them communicate, as well as research, that she asked what she could do to help. That's how last year's inaugural "First Coast Walk for Children with Apraxia" became a reality last November at the Bolles School track where kids and parents - 538 walkers - pledged $47,000 that went to CASANA.

"I have gained great strength from speaking with other parents, helping families navigate our convoluted system, and watching my son make friends," said Leigh. "All the money we raise from the walk benefits CASANA, the only national nonprofit dedicated to giving every child a voice."

A GREAT DEBUT

Out of the 87 walks for kids with apraxia held throughout the U.S. in 2015, Leigh's event ended up being the largest first-time walk ever and the most profitable for CASANA. When Leigh and her family got home the night of the walk, there were many messages from parents thanking her for giving them the opportunity to make their child feel special. The event was more than just a fundraising march, as it was a day-long family event with lots of activities for the kids, including each child with apraxia getting a medal for participating and a picture with their favorite character from storm troopers to Elsa the princess.

Funding for research is especially important as there is currently no known cause for most cases of apraxia, no specific therapy or timeline matrix to follow since every child's degree is different, and no real cure.

After researching a host of medical journals, Leigh felt intense speech therapy would be the best help for Ryder. Although she grew up in Jacksonville, Leigh also lived in Boulder for several years and felt they offered the best treatment for her son, so off they went to Colorado for special rehabilitation.

For two summers, the head therapist at Twice Exceptional "played" with Ryder with all the things he loves - from toy cars to avocados - six days a week, to finally having a breakthrough with him saying his first words. "The therapist completely changed her model based on my research suggestions of intense frequent play therapy style as opposed to sitting at a desk, and that's when his success began," said Leigh.

Because a typical weekly schedule shuttling a child with disabilities to various schools and therapies can be very time-consuming, it may appear that this is Leigh's only pursuit. In reality, she also works full-time as an operations manager for a construction company - First Coast Test and Balance - has raised a daughter while mostly single, now age 17, and supports her husband, Roly, a manager at Neptune Beach's Flying Iguana.

Most important, she provides support to other families who are struggling with a child's apraxia diagnosis.

'WORK TOGETHER'

Leigh tells parents they must "be strong to act as both their child's voice and advocate."

"Try not to let your thoughts and fears consume you; remember that your child is still your child, despite the diagnosis. For our children to succeed, we all have to work together," said Leigh.

And be each other's light as Albert Schweitzer explains in his quote, "Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being." You can follow her journey at her blog by going to www.apraxiamommabear.com.

Leigh continues the good fight, finding sources to help her son and sponsors and walking teams to raise funds for CASANA to continue their support and research. This year's walk is planned for Nov. 19 at the Bolles School track with hopes of surpassing their incredible first year of $47,000. All families of all abilities are welcome. If you'd like to help, you can contact Leigh at apraxiajax@gmail.com. She's currently applied to partners in policy making in hopes of one day going to Washington and fighting for apraxia funding.

"I find strength in trying to make a difference for children living with apraxia and have made it my lifelong mission to help their voices be heard," said Leigh. "Whether it is healthy eating, living naturally, or working with a child on overcoming a disability, I enjoy being fully immersed in my passions."

Like what N.K. Jemisin meant when he said, "There is no greater warrior than a mother protecting her child."

Share words that have made a difference in your life by contacting Christina Swanson at wordesign@att.net, or current@jacksonville.com.