LAST OF 2 PARTS
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It’s clear what 11-year old Haku loves: He loves the ocean, he loves his mom and he loves a challenge. As a child with autism, his challenges are sometimes very different from other kids his age, though at times his abilities are beyond those of his peers.
Ola Souza, 48, talks about her life in terms of pre-Haku and post-Haku. Souza, an accomplished hula dancer and radio personality with a quick wit and striking beauty, had a career that often put her in the public eye.
Then she became Haku’s mother, and her days became a swirl of activity around her son. Life is different but, she says, it’s better.
Donovan Andre Kahaku‘imina‘auao Souza was born in May 2005. Almost from the start he was called “Haku.” Souza, a single mom raising her son on her own, juggled her job at KRTR with taking care of her son. Sometimes, when she didn’t have baby-sitting help, she’d take Haku with her to the station and make sure he was quietly occupied with a binky when she was on air.
Her schedule at the radio station allowed her to be home during the day. She would often sit with Haku on her lap and teach him his letters and numbers. “Hand over hand on the Magna Doodle, we would write the alphabet, write the numbers 1 through 10.”
GETTING SOME HELP
“There are so many different services, but parents may have no idea how to integrate them all. They feel overwhelmed,” says Jessica Wong-Sumida, executive director of the Autism Society of Hawaii. These resources can help:
Autism Society of Hawaii
Serving children and adults on the autism disorder spectrum so that they can reach their highest potential.
autismsocietyofhawaii.org
Hawaii Autism Foundation
Helps Hawaii families find and fund treatments for autism spectrum disorders. Web page has links to numerous resources. hawaiiautismfoundation.org
Talk About Curing Autism (TACA-Hawaii)
For families who have just received an autism diagnosis, TACA aims to speed up the cycle time from the autism diagnosis to effective treatments.
tacanow.org
Easter Seals Hawaii
Provides services to infants, children and adults with disabilities and special needs.
easterseals.com/hawaii
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One day she went to the kitchen to get his bottle. When she came back, she realized that Haku had written the numbers 1 through 5 on his own. He was 18 months old. It was an amazing achievement, and it offset the fact that he wasn’t talking yet.
“A group of five of us hula sisters all had babies in the first six months of 2005,” Souza said. “There was a basis for comparison.”
Another time, she had written the numbers 1 through 25 on the little tablet. When she came back from making his lunch, Haku had written them on his own — but he had gone up to 27.
“I didn’t worry that he wasn’t talking when the other kids were,” Souza said. “I mean, he was writing numbers and the entire alphabet! But I said if he’s not talking at 2, I’ll take him to the doctor. I took him begrudgingly.”
There were other signs besides the lack of speech. Haku would line things up — a classic sign of autism.
“Every train track, every stuffed animal, every toy, every day,” Souza said.
She took him to two different pediatric neurologists just to be sure.
“It was only after the diagnosis that I started to worry. I didn’t know anybody who had a child with special needs.”
She calls the months that followed “that very lonely existence.”
“I didn’t tell anybody. It wasn’t a secret, but I didn’t speak about it on Facebook or tell people at Kahala Mall when he did something odd and they were looking. I didn’t want anyone to treat him differently.”
Experts in autism say the period immediately following a diagnosis can be fraught with emotion and confusion for parents.
“The best thing I ever did was to open my mouth. I very quickly learned I have a lot of friends who are raising kids with autism. And I had no idea,” she said. “I realized I wasn’t alone.”
Haku went to preschool, but he was a runner, so Souza was careful to choose a school that was completely gated. He worked with a one-to-one trainer and had early intervention. Just before his fourth birthday, he started to talk.
“That’s just the time he was ready for it,” Souza said. “One day he just said, ‘Yes.’”
Souza believed that he had words in his head long before he made the connection to speech. “Once the connection was made, though, it was a frayed connection,” she said, “but it continued to build. And we still build.” Haku is soft-spoken and polite — always “please” and “thank you.” He has worked hard on the ability to make and sustain eye contact when speaking.
Souza’s Facebook page is often updated with photos of her smiling boy.
“Haku takes nice selfies because he likes looking at himself,” Souza said.
Many of the photos she shares are of Haku and his friends — kids who accept him just the way he is — but most are of the two of them, mother and son, together on a journey that sometimes seems harder than most.
The dentist
Haku’s first trip to the dentist was one of those challenges all parents dread. Souza was told, “Bye, Mommy! We’ll call you when Haku is done!” Souza did as she was told, spending nervous minutes outside the office. When she was summoned back to retrieve her son, it was as she feared. “His face was beet-red from crying. I could see on his arms where the restraints had been,” she said.
The next time, Haku recognized the office and knew what was about to happen. “He lay down on the ground in the parking lot. He was screaming. He would not move, would not get up, and by then he was too big for me to carry. So I’m yelling at him, ‘Get up! Get up!’ and this old lady walking by stops and starts scolding me for yelling at my son — ‘Don’t yell at that child like that!’”
Then, a change in insurance meant Souza needed to find a different dentist.
At the new dental office, there was a big fish tank in the waiting room, and Haku liked that. The dental assistant asked if Haku wanted to sit in the dental chair. He didn’t, so the assistant said, “That’s OK. You sit in Mommy’s lap and we’ll just count your teeth, OK?”
So that’s all they did.
The dentist had Souza bring Haku in every month. Each visit was one step closer to the goal of getting his first dental X-rays. Haku was asked if he could lie in the chair with one leg on the floor. Yes, he could do that. The next month, would he lie in the chair with both legs up? Yes, he could do that, too. On one visit they walked down the hall to peer into the X-ray room. On further visits he practiced putting on the lead blanket and hearing the beep of the camera. Finally, in April of this year, Haku got his X-rays done.
“By then it was like no big deal,” Souza said. But it was miles away from the morning when he lay screaming in the parking lot. The day of Haku’s X-ray triumph, he walked calmly back to his mom’s car in the very same parking lot — the dentists were in the same building.
The future
As all parents do, Souza worries about Haku’s future, both about what he will become and who will be there for him.
Her greatest worry has always been who would look after Haku if she were to die. To her great relief, her friends from church Jasmine and Chuckie Inman have promised to be there for Haku. Jasmine is a preschool special-ed teacher who started a children’s ministry for kids with special needs. “They’ve walked very closely with us through this journey,” Souza said.
Souza resists any track that seems to point Haku to some sort of menial job. He has such impressive talents, like his ability to distinguish between small differences in pieces of artwork or his stunning ability to memorize. “There’s a perfect job out there for him,” she said. “Or maybe it doesn’t exist yet, but it will.”
But while she has put some security in place for his future, every day is still full of challenges and questions, frustrations and hurdles — but always the chance for something amazing.
“My friends tell me, ‘Girl, I don’t know how you do it.’ But, you know, I get up every morning and thank God I have a beautiful son.”
Reach Lee Cataluna at 529-4315 or lcataluna@staradvertiser.com.