A Common Journey

By Pinky O. Cuaycong

It was my sister who first put the words “autism” and “Alphonse” together in one sentence. She mentioned it before anyone else, before even my son’s pediatrician.

She was still in medical school then. She had been playing with her nephew for a few hours that day when she stopped and looked at me. “Ate, I think there’s something different about Alphonse,” she said slowly, weighing her words carefully.

My reactions, as expected, were instinctive, a mother grizzly defending her cub. When you have an absolutely gorgeous fourteen-month-old child, you’re loath to believe anything can be wrong with him. “There’s absolutely nothing different with him,” I brushed her off, hoping the tone of my voice would be enough to dissuade her.

“But, ah, ehm, have you heard of autism?” she persisted, her voice quivering. “Well, you see, we just had a lecture on it and, uhm, I have my Nelson here and…” (Nelson is the Nelson Textbook of Pediatrics.)

“Yes, I have, but what does it have to do with Alphonse?” I distinctly remember feeling hot and faint at that moment. My voice was slowly turning shrill, as hysteria and anger started setting in.

“Well, I think he has it. He might be high-functioning, you know…” I didn’t give her time to continue as I scooped Alphonse in my arms, glared at her malevolently, and left the room. How dare she! My very own sister!

In the weeks that followed, however, her words gave me the impetus to observe and look at my son with a more clinical and objective eye. Alphonse was adorable and chubby and cute and everything infants and toddlers were. It was gut-wrenching to acknowledge the things he did as anything other than “normal.” Flapping. Toe-walking. Spinning. Walking in circles. Loss of eye contact. Loss of language. By then, it simply was too difficult to deny anymore.

We all have taken those steps toward the realization that our children are different from their peers. Mine started that way, on one seemingly innocent afternoon that changed the entire course of our lives. In Valerie Paradiz’ and son Elijah Wapner’s lives, things were more turbulent, even more frightening, as Elijah, then only two, was afflicted with seizures. As terrifying as the idea of a child retreating into his own world is, even more frightening to parents is the prospect of watching helplessly as their child battles the demons of his own body.

Valerie and Elijah’s journey is as unique as Alphonse’s and mine, and as that of any other parent and child with a diagnosis on the spectrum. But I am in awe of their story, of their struggle and growth, and of their love and acceptance, as their journey marked not only milestones for their family, but for the larger community of individuals with autism all over the world. In Valerie’s quest to help her son, she finds a way to help others as well. How she translated her life’s work as teacher and writer into a vocation of reaching out to individuals with autism through appropriate education and self-empowerment is truly amazing.

Ms. Paradiz is one of four major speakers at Autism Society Philippines 11th National Conference this year. She will also conduct a day-long seminar on Integrated Planning and Teaching Menus on October 26 as follow-up to the conference. As pioneer of innovative educational programs for individuals in the spectrum, she will impart with us her experiences and knowledge in encouraging learning in our children. Specifically intended to parents and professionals, she speaks not only as a teacher and parent, but also as one with Asperger’s Syndrome herself. Her insights are valuable as she treads between our world and our children’s, with the hope of making them one.

This year, the theme “Autism Beyond Borders” is particularly apt in light of our efforts to cross cultures, languages, and, with hearts full of hope, prejudices and biases. Indeed, autism is no longer a single experience limited to those who live with it. Today, autism is all over the globe, reaching many families from all walks of life. Mine is one of them, Valerie Paradiz’ another. I embrace her as a fellow sister in our common journey.

Recommended Reading: Elijah's Cup: A Family's Journey Into The Community And Culture Of High-Functioning Autism And Asperger's Syndrome by Valerie Paradiz.

Autism Beyond Borders (where HOPE prevails), Autism Society Philippines 11th National Conference will be on October 24 and 25, 2009 at the SMX. A two-day post-conference lecture series (whole day sessions with Ms. Valerie Paradiz and Mr. Toshihiro Ogimura) follows on October 26 and 27, 2009 at the Skydome, SM North EDSA. Register now to avail of early bird fees, now until September 30 only.

Pinky Cuaycong is Kittymama, full time mom of two boys (a 16-year-old high school junior and a 14-year-old with profound autism), part-time writer, and blogger. In Okasaneko Chronicles, she writes about her life’s deepest passions: her husband of 18 years, her teenage sons, autism advocacy, and Hello Kitty.