Autistic young man publishes activity book for children
Kael Leander Aseron Pineda grew up loving cartoons and doodling. He also relished the trips to aquariums and theme parks he made with his family when they were still living in the United States. Now 21 and back in Manila, he is launching Seafood Squad, his own activity book for children, with characters he himself has created.
Kael is leading a more challenging life than his peers: at age seven, he was diagnosed with autism, with receptive and expressive language difficulty. This is why his parents, Braderick and Leirian, say the book’s publication celebrates more than the product per se. It is a testament to the wild and difficult, but also enlightening, journey of raising a son on the autism spectrum.
Trial and error
In earlier days, many things acted as triggers for Kael and caused him to feel overwhelmed – sounds, sights, anything unfamiliar. It was difficult for him to process, and most often, he simply walked away. That was on a good day. On not-so-good ones, he cried while in the middle of something, banged his head against the wall, or had a meltdown. The family could also not easily go out even for a restaurant meal; his parents always had to watch out for potential triggers – loud conversations, too many people, a crying child. School also proved to be a problem, his parents took him out of a regular Montessori school after only two weeks, and even a school that catered to kids on the spectrum proved difficult.
Leirian says there were many times when their family contemplated simply isolating themselves because of Kael’s condition. Their initial response was far too human. They, too, were frustrated, irritated, and doubtful they could ever get through one day after the next.
It was only later they understood the depth of Kael’s frustration about not being able to understand what others are saying, and not being able to express what he wanted to say. “Imagine going to another country where you don’t know the language,” Leirian said.
Brad once asked Kael what he felt like; Kael likened his experience to gasping when desperate to take a deep breath – but not finding any air. “It was a revelation. That was the moment I fully understood what my son was going through.”
But the parents knew Kael was capable of something unique, something special. He had always liked drawing, doodling the cartoon characters that he liked. More than that, Kael made detailed, complex drawings of entire theme parks, making sure that there was no mistake on each one. “His fine motor skills made erasing difficult for him, so every time he made a mistake, rather than erase, he simply threw the paper away and started a new drawing,” Leirian shares.
Kael made so many drawings of the same thing, aiming for perfection, that putting them side by side was almost akin to a “spot the difference” exercise.
“Imagine how much paper trash we had. The standard gift for Kael by friends and family were reams and reams of paper,” she adds. Today, Kael draws with a gel pen but displays the same bent for perfection.
Revelations
Brad and Leirian tried numerous ways to learn to help Kael better – and found that some approaches worked better than others. “In our case, parents’ involvement and the support we got from family members, friends, and our community were the deciding factor.”
The Pinedas credit the community for simply being there to listen to them. “They may not have the medical background or scientific knowledge, but the fact that they make time to listen to our heartaches and pains, as well as our joys and simple successes, is a big help.”
What works, Brad says, is an approach borne out of the fact that it is the parents who know their child more than anybody else. “You take one look at them and you can tell if they are happy, or sad, or confused.”
It is the child who has occasioned realizations by the parents. “Raising a son like Kael who is funny, creative, smart showed me a lot about who I am not,” says Brad. “I am a person who is not patient. I am easily angered and frustrated. There were times when I said ‘ayoko na nito!’ But giving up on Kael is not an option. Loving him is not the question, because I love him forever. Thus, he gave me the wonderful gift of realizing who I could be.”
Leirian has always believed that Kael is a blessing and a precious gift from God, even though there were times it was hard to see. But over the years she realized that more than raising Kael, and helping him prepare for his future, he is truly a blessing. “It is he who is helping us to be better people, to become more compassionate and understanding.”
They also realized that parents, even though they are preoccupied with caring for their autistic child, should not neglect their responsibilities to their other children. “Just because they understand the special needs of their sibling, or that they seem OK with it, does not mean you should be less of a parent to them,” Brad says. The couple has two older daughters, in their mid-20s, who are now working but still living with them.
“We are making use of this time to simply enjoy being with them, perhaps make up for the time we were not there for them, because we know that eventually they are going to have plans of their own.”
The Pinedas acknowledge that Kael has matured and they can now be forthright when they tell him they will soon grow old, and that he has to be prepared to be self-reliant as he enters adulthood. “We are hopeful for Kael,” they say. “We won’t let worry dominate our days. We teach him life skills, even as our own learning is never ending.”
From ‘suntok sa buwan’ to a dream come true
It was many years ago when Kael told his parents he wanted to have his own animated movie, or comic book. “At that time I thought, it is good to hear, but ‘sa totoo lang, parang suntok sa buwan. Hindi ko sya makitang nangyayari,’” Leirian says.
But things have a way of falling into place. Kael worked on his creation, his parents gave him even more support, the family found a publisher through somebody from their church group, and the publisher found an illustrator, Karlin Mia Lim, who executed Kael’s ideas for the book.
Kael, an avid fan of the hit series from the 90s, Friends, says Seafood Squad is a tribute to his favorite show which has occasioned in him an appreciation for friendships – simply by hanging out, spending time, even doing silly things together. “I just love the show,” he says. “It’s so timeless. It is what I envision friendship would be like, when I do get to have friends of my own.”
Kael used to worry about what people might say about Seafood Squad, but now he sees bigger things for himself — his own cartoon brand, an animated movie, perhaps – as he tries to relate to children and adults alike and entertain them through his work.
“He also says he wants to work with theme parks,” Leirian says. “I can’t see it happening now, but then again, who knows?
The Pinedas’ story is being written as each day is lived, but they are aware that it is their love for their son that sustains them.
“We are sharing our story not because we are perfect or that we have found a solution, but so that other families with autistic children could relate with us. We want to give them a sense of hope.”
Seafood Squad, which sells for P380, will be launched November 30 at Black Scoop Cafe, West Avenue, Quezon City. The launch will be open to the public from 5PM to 8PM. You may also get in touch with the publisher, Kenstar Graphics, Inc., at 87244555. It will also be available via Shopee and Lazada.