Support Coordination

Celebrating Nikohlas

October 3, 2012

Laura knew before her son was born that Nikohlas would not be a typical child. Her pregnancy was especially difficult, and when he was born, Nikohlas didn’t act like other infants.

“He didn’t want to be held or rocked, and forget using a swing!” Laura said. “He loved the vibrating chair and loud music.”

By 18 months, Nikohlas had stopped talking, but that didn’t prevent him from screaming. In fact, he screamed for the first two years of his life, prompting his pediatrician to recommend a specialist in St. Louis. By then, the family had already been referred to First Steps through Parents as Teachers, due to his delays, and Nikohlas’s verbal skills were those of 3- to 6-month-old.

Still, when the specialist told her Nikohlas had autism, Laura was shocked.

“I was leaning more towards sensory integration disorder,” she said. “I did have a couple of people mention autism but being uninformed on the subject; I brushed it off thinking ‘He couldn’t have that.’” 

But he was autistic and once she had a diagnosis, Laura felt a sense of relief because finally, she could work on helping him. Because of his developmental delays, Nikohlas had already been in contact with Boone County Family Resources. Now that there was diagnosis, his services could become more focused than ever.

Nickohlas, who is now 10, has received in-home physical, occupational and speech therapies as well as behavioral therapy. He’s used weighted blankets and vests to help him with auditory issues and attended Cedar Creek Therapeutic Riding Center. He is currently enjoying adaptive gymnastics, which his mom says is one of his favorite activities.

“It provides him with specialized instruction, exercise and a supportive environment to work on furthering his social skills,” said Sherry Tonsor, Nikohlas’s Support Coordinator at BCFR. “BCFR has also purchased specialized headphones and other assistive technology devises for Nikohlas to help with minimizing his auditory sensitivity.”

BCFR also purchased a Medi-Alert bracelet for Nikohlas and has assisted the family with pursuing support services through Touch Point Autism Services. Laura has educated herself by researching autism and attending the Autism National Conference. She believes all the services her son has received have each helped him in a different way.

“The fact that he is no longer banging his head against the wall, under a table, unable to speak, only able to scream and lash out is a success,” Laura said. “I celebrate each day and find the success in that day no matter how small because I have learned not to take anything for granted.”

Today, Nikohlas is in the gifted program at school, and his favorite subject is geography. He loves the computer and is fascinated with YouTube and Minecraft. He’s creating films using action figures which he hopes to one day upload to YouTube.

“Nikohlas is wild!” Laura said. “He is my fearless boy who is rarely scared of anything. He will usually try something at least once. Even though he is fearless, he is shy at first.”

Nikohlas’s mom said her son is developing a sense of humor and honing the fine nuances of telling a joke. “As his social skills evolve, he is spending more time with his peers, which is great to see.”

Laura’s advice to other parents of children with autism is to learn as much as they can about the condition.

“The more informed you are the better,” she said. “Remember that no two autistic individuals are the same. … Also, don’t let autism define your child; let your child define autism.”