By Michaela Marx Wheatley
The Norman Transcript
MOORE — Lila Brown is an adorable toddler with a love for the “Bubble Guppies” and “Yo Gabba Gabba.” But unlike many of her peers, Lila avoids eye contact, doesn’t like to play with other kids and the bustle at a restaurant or store can be so overwhelming that she will break down.
“She wanted to have zero interaction,” said her dad, Bill Brown, owner of Custom Reef Creation in Moore. “She didn’t smile at us.”
Lila, who had many medical issues since birth, always had a harder time than other kids her age.
As a baby, she screamed the majority of her waking hours due to gastrointestinal issues and spent a lot of time at her pediatrician’s office, but when she stopped engaging with the world around, her parents suspected that she may be struggling with autism.
Last week, their suspicion was confirmed. At 22 months, Lila was officially diagnosed with autism spectrum disorder. There are still more questions than answers, but at least the parents now have a diagnosis to work with.
During April, national Autism Awareness Month, her parents, Bill and Melinda Brown, who own a small family business in Moore, are trying to raise awareness of the disorder and hope their experience can help others.
A recent report by the Centers for Disease Control and Prevention estimates that 1 in 68 children in the United States has been identified with autism spectrum disorder.
Despite increased educational efforts, it is still a misunderstood disorder. Every day, the people living with autism and their families face unique and daunting challenges that many of us will never fully appreciate or understand.
Brown said people tried to be helpful by suggesting that Lila would “grow out of it.”
“They would say stuff like, ‘My kid didn’t start talking until she was 3’ or ‘Don’t worry, it’s just a phase,’ but we knew it wasn’t,” he said. “A lot of people said, ‘Give it time, give it time, give it time.’”
Despite all of the unsolicited advice, the Browns set out to find Lila help. Uncovering developmental concerns and acting early is the best way for families to access the services and supports their children need.
Autism spectrum disorder is a developmental disability characterized, in varying degrees, by persistent difficulties in social communication and restrictive and repetitive behaviors, interests or activities.
Early screening and intervention at younger ages helps children get the most effective treatments. Yet the CDC found that most children with autism are diagnosed after age 4, even though autism can be diagnosed around age 2.
“This is the one piece of advice I got: Trust your gut. Everything we read now says early intervention is key,” Brown said.
Catching potential developmental delays like autism spectrum disorder early can make a big difference in the lives of those children. Parents can track their child’s development with milestone checklists and health care providers now have easy-to-use resources for screening children through the new Birth to 5: Watch Me Thrive! initiative.
“The thing that probably helped us the most was Sooner Start,” Brown said. “We’ve seen a noticeable improvement.”
Lila started therapy with Sooner Start at 15 months and her parents say it has made a huge difference.
Sooner Start, Oklahoma’s early intervention program, is designed to meet the needs of infants and toddlers with disabilities and developmental delays. Infants and toddlers through 36 months of age who have developmental delays or have a physical or mental condition which will most likely cause a developmental delay are eligible for services.
After weekly therapy sessions with a Sooner Start therapist and daily therapeutic work at home, Lila has started to interact — on her own terms — with her parents. She will now bring a toy to her parents to have it turned on. This small gesture is a huge triumph for the Browns.
“A few months ago, I thought we had lost her,” said Lila’s mom, Melinda Brown. “She didn’t care about Bill and I or the rest of the world. You couldn’t get her to engage. After we started therapy, she made eye contact. That was a big emotional thing.”
Bill Brown said that he wants to raise some money to make therapeutic toys for kids available to therapists to give to families. He is holding a sale through the end of this month at his shop, Custom Reef Creations, at 2604 N. Moore Ave. in Moore with a portion of the revenue going toward therapeutic toys for children in Oklahoma. Brown said Lila’s Sooner Care therapist taught them what toys are appropriate and taught the family how to play with them with Lila. He said most of them are cheap, simple toys, but there are families that can’t afford to buy them and for Lila the toys have been key to her improvements.
There are still many questions of what the future holds. The challenges that come with autism spectrum disorder are hard on families and therapy comes at a high price tag.
The services in Oklahoma for children with autism are slim after they age out of Sooner Start.
Some hope may be on the horizon in form of the Affordable Care Act. According to the U.S. Department of Health & Human Services most insurance plans must now cover autism screening for children at 18 and 24 months because of the Affordable Care Act — with no out-of-pocket costs.
In addition, the Affordable Care Act includes many important benefits and protections that address the health care needs of those with autism. Insurers are no longer allowed to exclude anyone with autism or charge more based on this pre-existing condition. Also, children are now able to remain on their parents’ health plan until the age of 26.
For Lila and her family every small step is a win — but a long road lies ahead.
“I feel so blessed. She is present now,” Melinda Brown said. “Now that she is back into this world, it is our job as a parent to keep her there.”
She added that the specialists think that Lila will most likely talk and most likely be able to attend regular school. But the autism spectrum is broad and unpredictable.
“People have asked me if I would change the way things are if I could snap my fingers,” Melinda said. “I tell them no. She is perfect the way she is.”
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