Lahaina woman running Maui Marathon to raise awareness of autism and challenges parents face
LAHAINA – This Sunday, Oct. 13, will mark the culmination of a journey for Kayanna Bayly of Lahaina, who is running in the Maui Marathon for her son, Blake.
“My son is seven years old. He was diagnosed with Autism Spectrum Disorder (ASD) at age four. I’m running for my son and running to raise awareness for autism. This is what inspired me,” she explained.
Kayanna started training for the 26.21-mile marathon just three months ago. She began running two miles, then four and eventually up to ten miles.
“I put in a lot of hours training. When I worked my way up to ten miles, I was forced to stop running for three weeks because of large blisters on my heels and loss of toenails,” she noted.
It was even a struggle to find the right running shoes.
“There were days my feet hurt so bad, I thought my marathon was over. My son encouraged me to never give up. He told me every day to believe in myself. He always told me to do my best,” Kayanna said.
While waiting for her feet to heal, her son created a circuit of intense physical workouts: lunges over toy cars, squats, jumping through mazes, push-ups and sit-ups.
“If I missed a step, he told me to start over. He was a tough trainer! We started as a team; we will finish as a team,” Kayanna added.
After her feet healed, she found the right anti-blister socks. Training resumed at four miles, then slowly increased to six until she was able to run 21 miles.
Training was tough, with medical treatments and hours and hours of running that Kayanna, 48, forced herself to finish.
“My son has been incredibly supportive! He knows I’m running to raise awareness for autism. My son sacrificed a lot the past three months,” she commented.
The training process transformed her physically and mentally.
She has lost 46 pounds training for the Kahului to Kaanapali marathon. Kayanna committed to eat clean, cut out wine and take care of her health.
“Running for autism awareness allows me to take the pressure, anxiety and focus off me. After all, I am human,” she said.
“When I think about paying to run 26.2 miles to push my mind and body to the ultimate limit, it sounds crazy to me, but I stay focused on the cause I’m running for. Every step I run makes all the pain worth it!”
A single parent and co-owner of a business, Kayanna understands challenges all parents face. She explained that raising children with autism increases parents’ stress.
They have to manage meltdowns; avoid over-stimulating environments, sights, sounds and smells; take their children to multiple therapist and doctor appointments; and battle the state Department of Education (DOE) and teachers about Special Education needs and services.
Parents may lack desperately needed support from their families. Communication difficulties and behavioral problems among autistic children can make it harder to access educational and other services, leading to further isolation and frustration.
Kayanna said some parents of children with autism also face chronic stress (which can make them more vulnerable to physical illness), insomnia, anxiety and depression.
There are also financial stressors.
“Research has found that parents of children with autism may earn less money or have to work less hours than other parents,” she said.
Factors include taking children to medical appointments; having to leave work and pick up keiki during the school day due to behavioral problems; and paying for therapy, Applied Behavior Analysis (ABA) and other autism-related services not covered by insurance companies.
“The DOE is required by law in Hawaii to pay for autism services, at school, under Luke’s Law. Fighting to get the services, Occupational Therapy, speech, ABA our children need is like going to war,” Kayanna commented.
“Having a lawyer will help parents. I had to sue the DOE over five times to fight for autism services for my child. Some parents are even at risk of losing their jobs if they have to frequently take off work to care for their child or home school.”
Faith that God has a plan for her family, coping strategies (meditation, deep breathing, online support groups with other parents raising children with autism), supportive friends and parent training have all helped Kayanna.
“Autism is a journey… Blake is my tour guide. He’s taught me patience; how to be a better mom. Along our journey, I’ve also learned to become an in-home therapist. In our home, we choose to focus on reinforcing positive behaviors instead of focusing on negative,” she said.
Her message is that as a society, we must provide children with autism the tools, services and resources to succeed.
“Focus on what they can do – not what they can’t do. Focus on their abilities, not their disabilities. Helping people to understand, accept and include people with autism is how to make every day Autism Awareness Day,” she added.
Schools can be transformed for the better if all educators take courses in autism and how disabilities under the autism umbrella affect all children differently.
“We need to replace rejection, suspension, regulation, isolation with acceptance and inclusion. The universal goal is to help them feel accepted, understood and included, so they can be successful academically and socially,” Kayanna said.
“I hope in spreading awareness all educators will be more flexible, understanding, patient and willing to think outside the box, because not everyone can fit into the ‘typical’ academic ‘mold.’ Not all children with autism can learn the same way other kids are taught.”
Kayanna also emphasized that there are several diagnoses that fall under the autism umbrella. Each person diagnosed with autism is an individual with different behaviors and issues.
“I want to help others understand autism through awareness and information. This is how we will replace judgment, stares, glares and comments with compassion and understanding, patience and empathy.”
Sunday will be Kayanna’s first running race. She said her ultimate goal is to climb Mt. Everest for autism awareness.
“My son recently told me he had a dream. He said, ‘God told me in my dream I’m the chosen one.’ I asked him, ‘Chosen one for what?’ He said, ‘God chose me to be autistic, so I can make a difference in this world when I’m older.’ I said, ‘God chose me to be your mom, so I can make a difference,’ ” she concluded.