By Loraine Balita-Centeno
It’s a difficult albeit rewarding and enlightening journey they’re in. The task of caring for these God’s precious gifts is not always an easy one. And there are so many things moms of children with autism wish other people knew. So many things they want to say but are often unheard so are kept in their hearts while they muster the incredible level of strength and love each and every day in order to carry on.
These amazing moms endure the physical, emotional, and at times financial challenges that come with caring for a child with autism. Most see the difficulties as a test of character, a test of patience, of love and of faith. And the journey is not always easy but there are simple triumphs along the way.
Let’s step into the shoes of these six moms who are holding their children’s hands through their autism journey.
1. “Autism Spectrum Disorder (ASD) is not a disease, so hindi po sila nakakahawa (they are not contagious),”says Mary Ann Munoz, 50, whose daughter was diagnosed with ASD more than 15 years ago. She hopes people will be more kind toward children with autism. “If you say hello and they don’t say anything back, please don’t feel bad. They just don’t know how to respond or react,” she explains.
So what was it like finding out that her daughter has ASD more than 15 years ago? “Parang bumagsak ang mundo namin (like our world came crashing down). It was like grieving for someone you love,” she recalls. Mary Ann, who’s also a SPED and speech practitioner, says parents usually go through a series of emotions when they find out about their child’s autism. At first there could be denial, then withdrawal, or self-pity, sadness, and even depression. “Most of the time [parents] blame themselves for why things happened. But eventually acceptance comes,” she says.
After her child’s diagnosis, she started getting interested in special education so eventually she put up the Knight’s Castle Learning Center in Parañaque. Her advice to parents of children with autism is to invest time to get to know their child. “Time is the best investment they can give their child,” she says. She also reminds parents to “appreciate each progress or achievement, no matter how small.”
2. “Being a parent to a child with autism is difficult but it also has its gifts,” Fritzie De Vera, 39, declares. “It’s difficult because as parents we have dreams for our children and we hope to see them successful in their own fields, but in the case of our son we know we cannot expect too much,” she says. But it also is a gift because as parents, Fritzie and her husband have become appreciative of the simple things that life can bring. “Simple successes, especially what our son can do every day are already something great for us. His condition taught us to be more patient and loving.”
Her son River, nine, was diagnosed with mild autism at age four. He is non-verbal and has difficulty speaking certain syllables. “He also has sensorial issues, so he has stimulating behaviors that are unusual,” Fritzie says. River is also very sensitive to sound so they can’t bring him to noisy and crowded places. “When my son would make sounds and run around I hope people would be more understanding and not judging,” Fritzie quips.
She also hopes that someday schools and employers can be more accepting and inclusive. “I hope someday these structures will have a way for [children with autism] to thrive and also be successful in whatever they can do or give,” she wishes.
3. “Each person with autism is unique. Most people with autism are non-verbal but they can learn to communicate. They use other means like pictures, sign language, or pointing at pictures on the computer or a tablet,” Elaine De Jesus-Estrada, 45, explains. This mom from Pangasinan has two boys both with autism.
“It was one of the worst days of my life,” Elaine shares when asked how she felt when her boys were diagnosed with the condition. “I felt paralyzed and numb. I did not want to hear the explanation of the developmental neuro pedia when she confirmed the diagnosis. I was devastated and so was my husband.”
After the evaluation they decided to find help through SPED, and speech therapies. They also went to church to seek guidance. “I was crying but I told God that I accept this challenge,” she says. It’s there that she realized that caring for two kids with autism will be her forever mission in life. “It’s difficult but if you have faith, you’ll know everything will be all right. It also helps to find parents support group in your area.”
4. “Children with autism have a pure heart. They do not judge others,” says Razelle of Bacoor, Cavite, 36.
Her son Paco, now five, was diagnosed with ASD at age four. Acceptance and denial are still a challenge for her, especially when she gets exhausted. Razelle also feels desperate at times. She feels it’s only her who deals with the challenges of raising a child with autism. “Paco’s dad is in denial. He detached himself from all the hard work and the battle,” she admits. “I hope someday things will change and that I will have someone to help care for Paco, especially when I need to recharge since I have two other kids to look after.” She feels that part of the challenge of having a child with autism is making the siblings understand the situation. Since her other kids are also young and have their own needs, she’s trying to make everyone feel equally loved and cared for.
Aside from the physical stress of caring for a child with autism the situation can sometimes put financial pressure on families since special classes and lessons don’t come cheap. A therapy session, for instance, could cost around P600 per hour.
Despite the difficulties Razelle thinks having a child with autism has helped her become a better person. “I became extra resourceful, creative, more patient, and attentive,” she says. “I changed big time, after having a child with autism.”
5. “Raising a child with autism is never easy and it’s also expensive,” says Rachel Lirio Perez, 37. “But we don’t need people to feel sorry for us. What we need is understanding and empathy especially to our kids.”
Her son Cristof, six, was diagnosed with GDD or Global Developmental Delay in Singapore when he was two. When they came to the Philippines he was diagnosed with ADD at age four. “From the time I saw how different my son is from other children to the time we were told the diagnosis it was very difficult to accept,” she recalls. “What about his future? Who would take care of him when we’re gone?,” are questions that hound Rachel.
But with the support of her family and her husband, and her strong faith she is able to cope. “Autism can make or break a couple’s relationship. Thank God ours was made stronger,” she says.
This mom from Batangas also wants others to know that having a child with autism is neither a curse nor a punishment. “Our kids are gifts, special gifts from God,” Rachel says. She also hopes that people will realize that kids with autism have endless potential. “Let’s not end their story by losing hope and think that they will be like that forever. Let’s do whatever we can to help them develop and progress,” she urges.
6. “Children with autism did not choose to be in this situation and they deserve respect,” says Aurea Teodoro, 40, a public high school teacher and mother to a boy with ASD.
When her son Alexander, nine, did not show emotions, had no eye contact, and seemed to not hear anything she brought him to a doctor. He was diagnosed with ASD at age three. “Every day is a struggle, especially when Alex has his meltdowns,” Aurea says. He sometimes hurts himself by banging his head or biting his knuckles. “He also cannot say what he wants and needs or when he is in pain. So we are sometimes left guessing.”
Some children with autism have difficulty sleeping at night and Alex is no exception. “He is awake at night and sleeps in the morning. I have to look after him all night,” Aurea says. Despite the difficulties she believes someday she can make Alex a productive individual. “I believe we have a chance to let them experience the beauty of life,” she quips.
It takes a village to raise a child. And it takes a village with lots of love, patience, understanding, and awareness to raise a child with autism. Creating awareness and fostering understanding are the first steps toward helping these moms raise children with autism so they may blossom and reach their full potential some day.