Five-year-old Zedrick loves to dance to anything Taylor Swift. To perfect his moves to “Look What You Made Me Do,” he replays the tune over and over on his daddy’s mobile phone. “That song is stuck in my head and I already know all the lyrics,” says Zedrick’s mother Lorilyn Sta Ana. “It’s what makes Zed happy. And when he’s happy, there’s less problems.”
Mary Cruz talks to her child Pedro in a regular fashion. “I always talk to him about anything,” she says. “I believe that the more words I feed him and the more he hears it, the more he’ll use those words.” Pedro has since been showing the ability to complete a sentence.
Josephine Blas communicates with her son Joseph through prompt cards. Joseph doesn’t talk. “I practice speech with him but he’ll only do it when he wants,” Blas says. “I took pictures of his things and he’ll give me the picture if he wants something.”
Raising a child with autism can be so stressful because it requires constant experiments. Some experiment with vitamins or dietary adjustments. Many parents rely on gut feelings and advice from those who are similarly situated. But instinct sometimes fails. Autism is a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.
Because there is no one-size-fits-all procedure to treat children with autism, parents resort to trial-and-error and apply whatever works. Trying to find a cure for autism is like putting together pieces of the jigsaw puzzle— the symbol of this mysterious developmental disorder.
This is why parental involvement is widely recognized as critical for effective autism treatment, and intervention programs at schools incorporate the parents’ input in their children’s individualized education program, specifically tailored for a particular child.
An estimated 2.41 percent of children in the United States have autism spectrum disorder, according to a new analysis of data from the U.S. National Institutes of Health. The most recent previous estimate put autism rates at 1.47 percent in 2010, researchers from the new study said.
The analysis indicates that autism spectrum disorders now affects about 1 of every 41 children, a huge increase in autism from previous decades. Experts have argued that the increase in autism might be due to new diagnostic criteria that broadened the definition of the condition. For example, high-functioning children with Asperger syndrome now are diagnosed as having autism spectrum disorder.
Because there is no one-size-fits-all procedure to treat children with autism, parents resort to trial-and-error and apply whatever works. Raising a child with autism is like putting together pieces of the puzzle— the symbol of this mysterious developmental disorder.
Lorilyn and Zedrick
Zedrick was two when he started showing odd behavior. "He was repetitive, liked running around and around in circles and always dancing the Moon Walk. I thought Zed was going to be like Michael Jackson,” Lorilyn Santa Ana says in jest. “Later I was told by Guam Early Intervention Service that those were early signs of autism.”
With the help of GEIS, Zedrick was able to get into summer school where he unlearned certain behaviors such as running around. “It was because he was learning new things. He especially became interested in reading and storytelling," says Santa Ana. “His summer school teacher even said he was able to sit the entire time, which is amazing because autism’s No.1 behavioral issue is the kids can’t sit long. Autistic children always need to move. His teacher said was Zed like their supervisor or checking on everyone. Him being in school has helped him a lot.”
But dropping certain habits means picking up new ones. On certain days when dealing with the stress, a parent can feel alone. Santa Ana finds refuge on Facebook, where she found Rebecca Perkins, an expert in meltdown management, author and founder of My Special Child. “I'd stay up late and chat with her about my son. Especially when he started showing odd behaviors, like how he’d play with his nipples when he started at Headstart. Rebecca explained that this was just a temporary phase and that it was a way to soothe himself.”
With 19 other kids in the class, the noise was too much for Zed to take. “So he had to calm himself by touching his nipples so he won’t have a meltdown,” says Santa Ana, who works fulltime as a mother. “His first year of Headstart was tough not just for him, but even for me."
It's difficult learning that your child is different, but with the Autism Community Together, a local nonprofit group for families with autistic children and adults, Santa Ana has found a place for support. " I really look up to the older mothers and I enjoy listening to their advice. They are very encouraging and tell me 'Just let your son be' and 'Don't mind those judgmental people who don't accept you.'”
Mary and Pedro
Ten-year-old Pedro likes playing video games and listening to his daddy speak to him in Chamorro. He doesn’t make eye contact nor does he like to talking. But when his mother, Mary Cruz, asks him to mind his manners, Pedro will mutter a soft “Please and Thank you.” Although he seems characteristically shy, Pedro is open to life and enjoys his family. This hasn't always been the case.
When Pedro was two and a half, Cruz could tell something was different about her son. ”When he wouldn’t bond, there was something there that alerted me. If I carried him, he wasn’t comfortable, he was stiff."
When Pedro was diagnosed with autism, Cruz was left with more questions than answers. “I didn’t know anything about autism. I had been teaching for 15 years when he got diagnosed. I never had an autistic student,” she says. “I went to Doctor Google and read things about autism like picky eating and lack of sleep and I noticed them in Pedro."
Cruz teaches at the school where Pedro goes, so she's able to keep a close eye on his development. “A couple years ago, Pedro had an aide he was close to and everything was great, but one day the aide told me his wife was expecting a baby, so he had to get a full-time job,” says Cruz.
“Moments like that leave our kids in a transition. They have to separate with someone with whom they have built a relationship and with autism. It's hard for them to make a bond, to build a relationship. When they switch to another aide, it can be very difficult,” she laments.
As a teacher and mother, Cruz is aware of shortcomings of the Guam Department of Education’s special education program, which hires one-to-one aide indiscriminately without proper screening. They are not expected to take professional training. “One-to-one aides who apply for GDOE just need a high school diploma," she points out. “There's nothing else required. For someone who isn’t exposed to special needs children, they won’t know what they are in for, and then the turnover is fast. It can be too much. And they’re only hired as part-time employees.”
Cruz gets advice from other parents who are also members of ACT. “I can’t try all the strategies suggested because you have to adjust it to your child,” she says. “Autism in itself can be the same diagnosis for different children, but it’s always different. In ACT, we share strategies, and it may work for some families but it won’t always work for ours”
Pedro can catch two to three hours of sleep and have a great day without getting tired, Cruz says. Pedro had the same sleeping pattern when he was four. His doctor explained that Pedro’s internal clock worked differently. “My husband and I would take turns staying up to watch Pedro,” Cruz says.
Pedro falls asleep at 6 p.m. playing his game, then wakes up at 8 p.m. and stays awake all night. “My friend told me to try using lavender to get him to sleep, so I got him lavender oil,” Cruz says. “It hasn’t worked yet, but I’m trying. He has a white noise machine and he hums with it as he tries to fall asleep.”
Cruz says teaching Pedro things is really just about giving him time and consistency. “If I give up, he’d feel like he won’t need to learn so I don’t give up,” Cruz says. “He didn’t like to write, so I’d sit him down and tell him no game, no TV and no going outside. He’d write ‘Pedro.’ So he’d write it once then break the pencil. But that was ok because I’m a teacher and I always have pencils for him to practice with again.”
Cruz learned early on to treat Pedro like any other boy, because she doesn’t want him to be too dependent. “When Pedro was four, I met a friend whose 19-year-old son wasn’t potty-trained,” she says. “My friend said it was hard to keep changing her teenager. So I went home and told my family we had to potty train him, because if we don’t, then he’d be an adult who couldn’t use the restroom.”
Cruz knows when to try new strategies and when to take a step back. “His SPED teacher suggested we have a picture board for Pedro to communicate what he needs to do,” Cruz says. “Some people have that and I think it’s great, but I didn’t want to do that because I wanted him to understand without pictures. I’d ask him where do your shirts go? And he’d open all the drawers until he’d find the shirts drawer. Now I’d tell him to put his shirts in his shirts drawer and he knows to do it. He doesn’t need pictures.”
Like many children with autism, Pedro has a speech delay. “One of his GEIP meetings, they talked about teaching him sign language,” says Mary. “I understand this is procedure, but I didn’t want him to learn sign language, I wanted him to speak. He never did sign language and now he’s talking. We just did repetition and consistency, just like any other kid. A child will learn anything as long as you’re constant and you insist and you explain why he needs to know it.”
For Cruz, sometimes strategies come on a whim. “I don’t have answers that would work for everyone, I don’t think anyone does,” she says. “Some parents put their kids on medication to get them to sleep. I try to learn from anything and everything. I tell my family to just treat him like any other kid. That’s the most important thing. Then he has expectations of what he needs. I want him to be responsible and accountable.”
Josephine and Joseph
For Josephine Blas, her 9-year-old son’s autism comes with a variety of challenges. When Joseph was four months he wasn’t meeting his milestones, so the Naval Hospital sent a physical therapist to work with him.
“When he was a year and a half, they asked to bring an occupational therapist because he wasn’t communicating. The occupational therapist said Joseph might have traits of autism,” Blas says.
They were sent to Tripler Hospital in Hawaii twice. After CAT scans, MRI, and other observations, doctors determined Joseph has autism. He was about two-and-a-half then.
“Through the observations they detected he needed eye surgery and ear surgery. Joseph didn’t walk until he was four and a half.”
Joseph is quiet and calm eating his bowl of fries and watching on his iPad. “All he eats now is fries,” Blas laughs. “I’ve tried a lot of strategies, mostly just to get him to eat different foods. He used to eat a lot, like rice and chicken and pasta, but now all he eats is fries and a handful of snacks. He doesn’t eat anything sweet, or wet, or cold. So if he eats cereal it has to be dry. I’ve heard others say that with autism, he can revert back to how he was or he can change. He’s been eating fries for a couple of years. He gets all his vitamins from drinking PediaSure. I feed it to him in a bottle as he sleeps.”
Joseph has been attending school since he was three; however, he’s not that social. “He’s tolerant of other children, but he doesn’t look to play with other kids, pretty much keeps to himself,” Blas says.
Part of Joseph’s difficulty in relating to other children is due to his speech delay. “I practice speech with him but he’ll only do it if he wants,” Blas says. “He knows some sign language, but only when he wants. At home we communicate with PEC cards. I took pictures of his things and he’ll give me the picture if he wants something. He doesn’t talk. They use his cards at school too.”
Joseph goes to DODEA school where he receives great care and attention for his needs, Blas says. “He gets his physical therapy, occupational therapy and speech therapy there,” she says.
Joseph’s speech “isn’t really verbal,” Blas says. Joseph’s teachers and therapists try to teach him sign language and programs on iPad to communicate.
“One of the speech therapists at JRMC said because he makes noise, it’s just a matter of him turning it into words,” Blas says. But whether Joseph wants to do it is a different story. “He doesn’t want to do it. Right now if he wants something he just puts my hand on it so I can help him.”