As their 5-year-old daughter, Jacey, and her older sister, Natalie, 7, got in their starting positions for the 25-meter backstroke, their parents, Tiffany and Robert Regan, said they wished the circumstances were different.
Jacey, who was diagnosed with autism when she was 3, was to compete for the Glendale Gators swim club in the 7- to 8-year old division against her sister. Usually Jacey swims in the sixth lane in her own division, but at Windy Point pool, host of Monday's meet, there were only five lanes, bumping Jacey to Natalie's division.
"No one knows she's younger," said Tiffany before swimmers raced to the pool. She said she and her husband were worried people who didn't know Jacey would assume she was older and just a slow swimmer, fearing embarrassment for Jacey and wishing she could swim in her own age group.
Jacey fell behind in her heat, touching the wall at least 10 seconds after everyone else — but she was greeted by a thunderous applause by coaches, parents and teammates.
Tiffany let out a sigh of relief. Jacey still had a smile on her face.
A year ago, the thought of Jacey swimming in front of a crowd and playing with kids her age would have been inconceivable to Tiffany and Robert because of her autism, but the Glendale Gators have given Jacey a social, safe place and helped her thrive.
"She'll go around to everybody and say, 'I'm on the Glendale Gators,'" Tiffany said Monday. "She's thrilled. To her therapist today, she ran in and said, 'Guess what, I have a swim meet tonight and I'm swimming backstroke.'"
Tiffany, a nurse, said she knew something was wrong when Jacey, then 3, started pulling her hair out and screaming whenever Tiffany touched her. Jacey also wasn't speaking more than one or two words. She took Jacey to a doctor in Richmond, expecting a diagnosis of Obsessive Compulsive Disorder (OCD) or something similar.
"When I was there, I didn't expect to hear the word autism," Tiffany said. "I heard the word autism and just did not expect that."
Autism is defined as a "disturbance in psychological development in which use of language, reaction to stimuli, interpretation of the world, and the formation of relationships are not fully established and follow unusual patterns." According to the Autism Society, 1 percent of children ages 3-17 in the United States have autism.
Robert, who is in the Navy, was deployed at the time of Jacey's diagnosis, which made learning about the autism harder for Tiffany, she said. She had her family and Robert's family in the area to support her, but said Jacey was a handful.
Robert returned home about six months after Jacey was diagnosed and said he wanted to think that nothing was wrong with Jacey — that maybe she just had a few ticks, but nothing serious.
"She's not doing things as fast as other kids, and you start trying to believe it, but you're wondering, did I do everything right," he said. "There are not a lot of studies for what causes it or how it's caused or what's missing. You're trying to put all of the pieces together and there are just no answers. It hurts in a way."
The Regans got some answers when Jacey started Associate Behavioral Analysis (ABA) therapy with Sade Cole of Paradigm Pathway Consulting at the start of this year, and Tiffany said she instantly saw a change. Jacey still has ticks, including sucking her thumb, throwing tantrums, and pulling threads out of a blanket rather than her own hair, but she also is talking more and has more social interaction.
"In ABA, you do things based on the kid's needs, so our program is geared for them individually," Cole said. "If you have a child who has autism and they receive an ABA prescription, then it can be for something just as simple as they need help because their academics are not where they need to be or they just need a little bit more help because their behavior is really, really aggressive and they need help transitioning. Those are things we take for granted as typical developing people."
Cole said she works with Jacey two to three hours a day, sometimes going to the library and being a part of play groups or doing something as simple as talking to the librarian. The ABA will progress according to Jacey's needs, but once school starts, Jacey won't be in special education classes.
Though Cole said diagnosing a child with autism as early as 3 years old would've been rare seven years ago, it's not anymore and it's good to start therapy as early into a child's formative years as possible. She supported Jacey's desire to be on the Glendale Gators with her older sister because she thought it would be beneficial for Jacey to be around more kids her age.
Jacey wanted to be on the swim team since last summer, but once she was old enough this summer, she still had one more prerequisite to meet. The minimum age to be on the Gators is 5, but to officially be on the team, participants have to swim the length of the pool, 25 meters.
"She could swim, but she couldn't quite make it the whole way," said McKenzie Hogan, a Glendale coach. "I grabbed her one day and I sat her down and said, 'You can do this, and you're not going to stop or touch the bottom.' She needed to hear it from somebody else other than maybe her family that she can do it. I just had to push her and she just swam right down the pool with no problem."
Tiffany said she was worried Jacey's coaches wouldn't be able to handle her daughter, since Attention Deficit Hyperactivity Disorder (ADHD) can be more pronounced in children with autism. She hasn't heard any coaches complain, and Hogan said that Jacey is always happy to be in the pool.
Hogan and fellow coach Tristan Hobbs spend time working one-on-one with Jacey. At the Gators' meet Monday, Hobbs had to take extra time to encourage Jacey to jump into the pool for her backstroke.
Cole said Jacey's involvement with the team helps Jacey see other kids appropriately deal with things, like taking directions and not stopping before getting to the end of the pool. It's also a chance for the team and everyone involved to be exposed to autism.
"It's not just this rare syndrome that people are so afraid of," Cole said. "Autism is something we see every day and it's just something we have to work with. … It encourages other kids to learn that these are just regular kids, just like they are, and they just happen to have autism — autism doesn't have them, but they have autism."
The team also encourages positive reinforcement, giving swimmers ribbons after every meet regardless of where they place. Cole said Jacey will come to the sessions with her ribbons, showing them off and telling her about how she did in the swim meet.
For Jacey, it marks a milestone because before, she wasn't expressing anything normally — and definitely not joy.
"She doesn't care what color ribbon it is, especially being the youngest on the team and having autism," Tiffany said. "She's definitely not the fastest, but she gets those ribbons and hangs them up in her room. She's very happy now — she has friends for the first time."Copyright © 2015, Los Angeles Times