LIHUE — It was an off-handed comment from her grandfather that raised red flags for Shana Cruz about her firstborn son, SJ.
SJ, now 4, was 2 at the time and he wasn’t talking as much as other kids his age.
“My grandpa said, ‘What, your son don’t talk?’ and it bothered me,” Cruz said. “I didn’t have an instruction manual, this was my first child. So I was like, you know what, I’ll call Easter Seals and see what’s going on.”
After testing at the children’s center, the family found out SJ had sensory issues and developmental delay.
“It stayed that way until he went to preschool in Koloa, and they started seeing red flags,” Cruz said. “So we went to a psychologist and the psychologist told me about (diagnosing SJ with autism) and what I needed to do.”
Her first thought was that it had something to do with the traumatic events surrounding SJ’s birth.
“I was involved in a hit-and-run, and then the next day I had SJ,” Cruz said. “I thought it was because of my accident, but they said no, sometimes it’s genetics.”
That’s when Cruz had her “meltdown.”
“Of course it was heartbreaking, but I said I had to put my big girl panties on,” Cruz said. “I said, ‘Show me the way,’ and ‘This is my child, my child comes first.’”
Early intervention helps
Lindsey Shepherd, with Aptitude Habilitation Services and the Kauai Autism Taskforce, said parents who suspect their child may be somewhere on the autism spectrum should follow in Cruz’s footsteps.
“There’s no risk to getting your child assessed,” Shepherd said. “It doesn’t hurt the child. At least go and double-check to make sure, if there’s concerns.”
Especially at the age of 2, Shepherd said, the services that are supplied at Easter Seals are play-based and typically fun.
“I’ve never heard of a child that was hurt because they got services when they were 2,” Shepherd said.
The biggest red flag families should look for in their child is loss of skill, she said.
“Some kids develop speech later, some kids might not hit the developmental milestones, but we look at a combination,” Shepherd said. “Are they not talking and not following a point? But if they ever lose a skill, that by itself is immediately a red flag.”
For example, a possible sign of autism is if a child was saying 10-15 different words and then that child stops talking for a weekend, or over the course of a week.
“If your kid’s not feeling well, they might not be doing something normally,” Shepherd said. “I would say, generally, give it a week.”
Monitoring milestones is helpful as well, she said, because some children will develop along a typical pattern, then lose some of that progress.
“Kids that never follow a point or an eye gaze, or they don’t smile socially, those are the things you should mention to your doctor at the 12-month check-up, or the 18-month check-up,” Shepherd said.
Experts have the ability to diagnose a child as early as 18 months, and a child that young can start getting services, which Shepherd said is imperative for success.
“The outcomes for children are much better if they start to receive services at a younger age,” Shepherd said. “They don’t have a mental disorder, or a disease. Their brain is developing differently and they process things differently.”
If children receive applied behavior analysis services by ages 2 or 3, while their brains are still developing, there’s the potential to have a hand in that development.
“We’re trying to get as much into them as we possibly can to try and change the course of their development,” Shepherd said. “After (age 6), we’re skill building.”
Having access to the right information is crucial for families who have children with autism. One of the important things to know is that parents could get up to $25,000 a year for services, Shepherd said.
That’s thanks to Luke’s Law, which passed in the 2015 Hawaii legislative session, and went into full effect this January.
The law requires all commercial insurance to cover services for children with autism from ages 0-13.
“Most companies on Kauai are covering it, but I think there’s a couple that don’t. Call your insurance provider and ask,” Shepherd said.
Any insurance company governed by the state will be participating, but there are nuances involved that make it a good idea to chat with your insurance provider if you think your family could use the services.
“There’s a chunk of families (on Kauai) that have started taking advantage of the services, but we know there’s more out there that either don’t know about it, or don’t know how to access it,” Shepherd said.
Medicaid, which falls under federal guidelines, has also changed its policies and is now covering kids ages 0-21, with no cap.
“Those kiddos can have as much services (as they need) until they become adults,” Shepherd said. “Both the federal mandate and the state law happened at the same time.”
However, the insurance coverage doesn’t necessarily make the diagnosis process easier, Shepherd said. Families still have to go to their doctor and get a referral for services, then the child has to be diagnosed through a psychological evaluation.
After that, families can reach out to one of the companies that provide services.
Cruz said she was fortunate enough to have a cousin that helped walk her through the process, because that cousin has two autistic children of her own.
“Some parents I talk to feel that there’s resources out there, but they don’t know the questions to ask,” Cruz said. “And now I have a sister with her child that may be coming up on the spectrum, so I told her I’m willing to go and ask the questions for her and advocate for her.”
Cruz said her second son, MJ, who is 2 1/2, has now been diagnosed with developmental delays.
“We’re trying to understand if he’s on the spectrum, or if he’s copying his older brother,” Cruz said.
Regardless, she has high hopes for both of her children.
“I saw this autistic boy give a testimony at 23 years old and it made me cry because I thought, that could be our son,” Cruz said. “If that could be done with that child, than it can be done with SJ and MJ, so I’m pushing to not let them fall through the cracks.”
More information on autism can be found at www.easterseals.com, or call Lindsey, with the Kauai Autism Taskforce, at (808) 346-5365.