Gwen’s Life Puzzle
As parents, at first we tried to deny that anything might possibly be wrong with our first-born child, Gwen. Even some of our friends tried to cheer us up by telling us that it was normal for some children to show delays. Maybe he was just a late bloomer. Maybe it was too early to tell.
But somewhere in the back of our minds, we had doubts. Gwen seemed to be different than other kids his age. He had some unusual attributes. He repeatedly screamed loudly. He would run in circles. He refused to have a haircut or even catch a glimpse of a barber shop. He wouldn’t make eye contact. He was still not talking at two years of age. He had not said even one or two words. He wouldn’t listen to bedtime stories. At one point, I thought he might be deaf. He didn’t seem to know what to do with his toys. On several occasions, he even hurt himself intentionally.
Of all of these strange, unexplainable behaviors, we were most alarmed by his increasing isolation. He would not play with other kids. He was unresponsive to others. He no longer seemed to notice when another person was in the room. At times, Gwen would walk alone in the middle of the road, completely unaware of the danger of the situation.
He didn’t notice or mind when he banged his head. It seemed as though he didn’t feel any pain at all.
At a certain point, we were no longer able to continue denying that something was wrong. We knew that Gwen was facing a serious problem.
Around the time when Gwen was about 2 ½ years old, my wife’s client, a pediatrician, suggested that we send our son to a doctor for an evaluation. We went to see a developmental pediatrician at the Polymedic Hospital in Mandaluyong and that visit was the first time I heard the term “Autism Spectrum Disorder”.
The doctor explained to us that autism is a psychiatric disorder of childhood characterized by marked deficits in communication and social interaction, language impairment, preoccupation with fantasy, and abnormal behavior, such as repetitive acts and attachment to certain objects. It is sometimes associated with intellectual impairment.
Gwen possessed all of these symptoms. He was diagnosed with mild autism.
My heart sank. I became depressed. It was so difficult to accept the news that my son may never be normal and that there was no known cure for his illness. I lost my appetite for a week and was unable to sleep. I could not think about anything else. I became preoccupied with fear that our son might be lost to us forever.
Then I woke up one beautiful morning and decided that this was a fate that I must accept. I decided that I could not just let those fears eat away at my soul. I would have to take action before my son was totally taken away by his illness.
We searched for more information that might help us deal with his condition. We became obsessed with finding out what might help him. We relied heavily on the internet and we were encouraged to learn that there are a wide variety of treatment options offering promising results. We also explored inexpensive dietary approaches that might reduce his autism symptoms. We are particularly grateful to parents who have created websites which offer families stories of hope.
Gwen began occupational therapy (OT) and made great progress. The effect of the OT was so obvious that even our neighbors noticed it. It seemed to reduce the frequency of his tantrums. Suddenly, he stopped hitting and banging his head. It was great for the first three months and then Gwen had to stop going to therapy because we forgot that we are also suffering from another nightmare, poverty, and we lack the resources to pay for these services.
I’m just a shoe salesman making minimum wage in the Philippines and my wife is a housewife. After Gwen was diagnosed, my wife gave up her job in sales because Gwen required her full-time attention, care, and guidance. No one could understand him as well as his own mother. At one point, I left Gwen and his mom to pursue employment in Saudi Arabia, a move that I thought would result in better assistance for my son.
Our situation only became more complicated as we learned the extent of Gwen’s needs. His occupational therapist advised us to enroll Gwen in speech therapy and Applied Behavioral Analysis (ABA) therapy along with the OT. We were also advised to enroll him in a daycare center or special pre-school program to develop his social and cognitive skills. Difficult as it is to admit, my earnings are simply not high enough to pay for all of these early intervention therapies that are so crucial to my son’s development.
We searched for therapy centers with lower rates. Gwen was enrolled in a therapy center in Pasig City where he received one-hour sessions of Applied Behavioral Analysis therapy twice weekly. We paid Php 400.00 per hour of each session. That arrangement only lasted for three months.
Our family is completely overwhelmed by hardship, fear, and anxiety. My mind and soul have been filled with bitterness and desperation. At times, I have considered giving up, giving up my son’s life to autism’s powerful grip.
The situation only worsened as our child got older. My son began to regress. He started to engage in self-injurious and dangerous behaviors such as hitting himself, his mother, and people around him. He had angry outbursts. He banged his head on the floor. He slammed the door out of frustration. His behavior became unmanageable. I could no longer bear to see my son this way. He was like a prisoner of this strange and unexplainable illness.
At home, my wife attempted to use educational intervention techniques learned from the internet, but her knowledge was not sufficient to fully address our son’s needs. She used visual pictures cut out from magazines to familiarize Gwen with common items. She tried to teach him to read using ABC books, and we were amazed at how well Gwen responded. He proved himself to be a quick learner and his cognitive skills developed. My wife started to teach him how to write letters and he learned to write his own name. His fine-motor skills improved, and we found that he enjoys drawing characters from his favorite Disney cartoons. Additionally, Gwen really liked working on the computer. We were shocked when we realized that he could browse the internet, amongst many other amazing things.
Encouraged by this progress, we decided to enroll Gwen in a special school. Unfortunately, however, we began to lose hope that this would be a possibility after we inquired about the cost of several different schools.
Then one of my wife’s friends told us about a public school in their city. Gwen was admitted into that school for the 2009-2010 school year. As a result, we transferred our residency from Mandaluyong City to Antipolo City where his school was located. Gwen went to this school only twice weekly, and unfortunately each child only received 20 minutes of intervention.
Gwen participated well in class and amazed his teachers with his abilities. Unlike many of his classmates, he could read, write, and draw. Unfortunately, however, the arrangement worried us because our mildly autistic son was often not able to concentrate in school because his classmates were often screaming, roaming, and crying.
The teachers believed that Gwen could greatly improve his skills and behaviors in a one-on-one intervention setting where his needs could be better met. I became so depressed over the fact that we could not afford to send him to a private special education program.
Recently, my wife made the very difficult decision to return to work to support Gwen’s therapy. Because of that, we had to move back to Mandaluyong and transferred Gwen to another special education school in Mandaluyong City.
We grew concerned about the set-up of this new school. They were seven special kids and only one teacher, who was a parent volunteer, not a registered teacher. Additionally, they had no classroom and held their classes on the stairs near the school gate, an uncomfortable and unsafe environment for these children. After some time, my wife and I agreed to pull him out of that school.
Gwen, now 7 years old, stays at home with his Grandma, and he misses going to school. He has also had to stop his occupational therapy.
In my heart, I know we are blessed to have Gwen. I am not that poor after all because I have a bright and clever boy. Gwen does not speak, but his message can be clearly heard. He is my inspiration and he makes me stronger. He broadens my life perspective, and encourages me to set larger life goals.
Our goal is not to make him “normal.” Our goal is to unleash his special gift. Our goal is not simply to take a “damaged kid” and make him whole. Our goal is to connect him with his special gifts, and enable him to succeed in his own special way.
Gwen is an amazing kid. He has a rare photographic memory, a loving heart, and a warm demeanor. He possesses special talents, gifts, and qualities that many parents wish their children had.
Despite all of these strengths, we still continue to face significant challenges. Gwen currently has no access to speech, occupational, and behavioral therapy. Public special education programs have limited services for children like him. Only private special education schools can give him a better education and unfortunately, private school is outside of our financial means. I’m not a doctor. I’m just a father who loves his child so much.
Many autistic children have overcome autism because their families are fortunate enough to be able to afford optimal supports and services. But what about people like us? What future lies ahead for children like Gwen?
Poverty + Autism is the perfect combination for a miserable life.
Like everyone else, we want a better future for our precious son. He is our only child. It breaks our hearts that we can’t give him a sibling, a lifelong companion to grow up with, because we fear we would not have the means to raise two children and still give Gwen the extra support that he needs.
We believe that if Gwen could gain access to appropriate educational interventions and therapy, he could be mainstreamed and eventually overcome autism. Unfortunately, these supports and services are outside of our means and we are desperately seeking assistance for his son’s complete recovery. Gwen needs a miracle, a miracle of the heart.
Celso Delos Santos Rase
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.