UAMS Pediatrics - KIDS FIRST Program

Ethan Fedder is four years old. He does not walk or speak. He has a lot of tantrums, and he has difficulty paying attention for very long. Looking at him, a stranger might not realize what a monumental journey this boy's family has undertaken, or how incredibly far he has come.

His mother, Nicole, spent Ethan’s infancy putting the puzzle pieces together.

Shortly after his birth, Nicole was terrified by her son's reaction to loud noises.

"He would flail around like he was having a seizure," she remembered. 

An EEG revealed normal brain activity during these episodes, which meant that Ethan was not having seizures. Instead, doctors diagnosed him with hyperekplexia, a neurological disorder that causes an exaggerated startle response. Ethan spent the next several months on a sedative to control his movements and prevent injury.

At the age of six months, Ethan was still unable to lift his head and hold it upright. His head measured more than twice the average size for his age. Ethan's doctor diagnosed him with macrocephaly and determined that the sheer weight of his head was preventing him from holding it up on his own.

At a time when he should have been learning to crawl, Ethan instead began to roll across the floor to get around. He still could not hold up his head or sit alone.

As Ethan grew older, Nicole noticed more unusual developments. She could not pick her baby up suddenly without inciting a tantrum. She learned to handle him carefully to avoid an upset. Eventually, Nicole realized that Ethan did not like to be touched.

"I knew I had to find something," she said. "But I didn't know who to trust at this point."

By this time, Ethan was two years old. He was still unable to lift his head. He continued to roll around on the floor. He had never spoken a word.

Yet most concerning was his inability to feed himself or even to eat solid food. He was terribly underweight from a long-term diet of baby food and supplementary shakes.


Getting Help at KIDS FIRST

Nicole's sister recommended KIDS FIRST after her son attended the program, so Nicole made an appointment at the clinic in Morrilton, Arkansas.

KIDS FIRST conducted a thorough evaluation that revealed Ethan's severe autistic tendencies for the first time. The staff recommended comprehensive therapy including speech, occupational, and physical therapy to help him learn everyday living skills.

He enrolled in March of 2007, and the therapists at KIDS FIRST went straight to work.

Their first order of business was getting him to hold his head up. Hours on the swing in the therapy gym helped him develop enough strength to balance his head on his own.

Meanwhile, the therapists went out of their way to allay Nicole's concerns.

"They knew that I was nervous," she said. "They would let me watch all of Ethan's therapy sessions until I trusted them enough to leave him alone. They even called me every day to check in and let me know everything was all right."

Once he could hold his head up, Ethan learned how to sit unassisted. Sitting led to crawling, and crawling has led to bearing weight on his legs. Ethan is now strong and agile enough to maneuver a wheelchair on his own, giving him independence his mother only dreamed of a year ago.

"One of the biggest things [KIDS FIRST] helped with was his mobility," Nicole said. "They pushed and pushed to make him work for it. He went from scooting on his bottom to pulling himself up.  And now he's moving on his own."

The work continued in other areas. Ethan's occupational therapist helped his fine motor skills by teaching him to grasp things instead of palming them. She also did sensory therapy and helped him learn to tolerate touch by rubbing his skin with a brush each day.

"Now I can just grab him and pick him up, and he's totally fine with it," said his mother. "I can hug him and he doesn't cry."

Ethan's speech therapist rounded out the program by teaching Ethan communication and self-feeding skills.

Though he still cannot speak on his own, Ethan quickly learned how to use a computerized speech assistant, and Nicole looks forward to implementing one for him in the future.

The speech therapist's most remarkable gain was teaching Ethan to how to eat. He has learned to feed himself and drink from an open cup. A regular diet has brought his weight to a healthy 36 pounds.


Moving On

When Ethan began his Pre-Kindergarten year at KIDS FIRST, Nicole knew the time had come to prepare for the next step. 

Ethan was not yet ready for public school but would no longer be eligible to attend the program once he turned five. The staff at KIDS FIRST recommended a full-time care facility for Ethan to give him the intensive therapy he needs to mainstream into public school.

"I was completely against the idea," remembered his mother. "But they were so supportive. They took me down there to tour the place and completely changed my mind about it."

A room at the new facility opened up unexpectedly, and Nicole knew it was time for Ethan to go.

On Ethan's last day at KIDS FIRST, the staff hugged him, cried over him, and took pictures with him.

"They did not just care about him as a client," said his mother. "They loved him for who he is, because he is just such a special boy. They are my second family because they just gave us so much support."

In the course of two years, KIDS FIRST made incredible advancements in Ethan's quality of life. The program had also changed Nicole's expectations about what therapy could do for her son.

"I don't know what I would have done without them," she said. "They opened their arms and their hearts to me and my son. Putting Ethan in KIDS FIRST is the best thing I ever did for him."