BY ALINA R. CO October 26, 2012 2:22pm
It’s every parent’s dream for his or her child to develop into an accomplished adult and be genuinely happy.
For most, it’s the thought of the child eventually doing well in a chosen career, settling down, and if luck would have it, perhaps blessing them with a grandchild or two.
Yet, these unwritten social standards usually do not apply to parents whose kids have been diagnosed with autism.
A developmental disability that affects the cognitive, social, and psychological abilities of a person, autism is a condition that has no known cause and no known cure.
It is an impairment that affects the way a child processes information and acts upon stimuli in his or her environment. Good news is, with proper care, acceptance, love and nurturing, the child’s condition can improve greatly.
“Doon sa pinakamaliit na achievements, masayang-masaya na kami,” Marilen Zabala, a mother to 28-year-old son Emil, said, recounting how their family celebrated their son’s littlest achievements, like learning how to talk and starring in a musical play in the special school where he studied.
Similarly, Cathy Cham, mother to 21-year-old Vico, shared her joy upon discovering their son’s artistic gifts when he was eight years old.
“Since then, his passion for the arts evolved. Paper dolls in freehand drawing using pen and ink were his early beginnings in arts, then he developed his skills in computer graphics design and now he is into canvass paintings,” Cham said.
Emil had finished a certificate course in music and is now dabbling in culinary arts, while Vico is now finishing his computer graphics design course while having on-the-job-training in an advertising company.
Despite the disabilities, persons with autism have special gifts, and parents can only wish to leave this life knowing their children are happy. And since they cannot be around forever, they want to ensure that someone’s going to take care of them, long after they’re gone.
“Sana bago man lang kami mamatay, makita namin na masaya at kahit papaano ay may fulfillment sa buhay ang anak namin,” Zabala shared.
According to Dr. Lirio Covey, a clinical psychologist from Columbia University and president of the Association for Adults with Autism, Philippines (AAAP), the fact that adults with this condition won’t live forever is the glaring inevitability that their organization is seeking to address.
“And also, the person with autism has changing needs over the years and the family won’t be able to fulfill those needs in the best way or in the way that’s beneficial to the person with autism,” Covey added.
Dr. Covey’s son Mikey is 34 years old and a resident in a life-sharing group home called Armonk in New York City. Five other men with autism live in the same group home.
“When my son turned 18, I felt really bad for him because he felt he didn’t belong. Whenever we went to parties, he sits in a corner and plays a video game. That’s really isolating, that’s really lonely. Somehow, now in his group home, even though his abilities are limited, he understands there are other people like him and somehow they manage to do things together,” Dr. Covey said.
Since AAAP’s founding last year, Covey, together with parents like Cham, have been combining efforts to build a life-sharing home called “A Special Place” as an alternative home for adults with autism.
Covey envisions it as not just a safe haven for adults with autism, but also as a place where they can take on jobs, as well as find companionship and belongingness.
In the US and other First World countries, there are plenty of state-funded group homes. Here in the Philippines, there are none.
Work in progress
As of now, A Special Place is a work in progress. The AAAP is in need of funding to build six individual houses with farms, as well as educational and recreational areas.
“We are conceptualizing various business models that will enable us to raise money. It has to be self-sustaining. We also want to open up the homes to families who cannot afford to pay so that would mean fund-raising,” Covey said.
For Cham, A Special Place will be Vico’s second home, where he can get to share his life with a community that will care for and understand him.
“Eventually, as we grow old and gray, and incapable of taking care of ourselves, Vico will need a second home where he will belong. But for as long as we are healthy and capable of taking care of him, we would very much like to enjoy our life together,” she said.
An educational symposium
Cham, Covey, together with the member parents of AAAP, talked about A Special Place and other issues concerning adults with autism during a symposium entitled “Diagnostic Treatment and Policy Issues Affecting Adults with Autism” last October 13 at Ateneo Law School in Rockwell Center.
Around 35 people attended this first educational symposium organized by AAAP with the purpose of raising awareness of and addressing the needs of adults with autism.
Ateneo Legal Service Center Asst. Director Atty. Nina Sison-Arroyo talked about the Philippine laws on the rights of persons with disabilities.
Dr. Lourdes “Honey” Carandang, president of the Metropolitan Psychological Corporation, presented a comprehensive framework for understanding autism and families with autism.
She advised the parents, “Don’t feel guilty that you’re not always with the child. Filipino mothers are always guilty, especially if you’re a working mother,” Carandang said, to the laughter of the audience. She quickly added, “but as long as it is in a level that is comfortable, that is okay.”
Dr. Erlinda F. Camara from the University of the Philippines, on the other hand, shared studies conducted here and abroad tackling employment models for persons with autism. She also presented an evaluation of the Philippine workforce, where there is an increasing trend of part-timers, contractuals and freelancers.
The last speaker was Ronald Sanchez, the director of Camphill Community located in California, USA. He shared with the audience his experiences in Camphill, a group home where people with disabilities find a sense of community and society.
A place under the sun
To date, adults with autism are still feeling their way toward finding their place in society.
Emil dreams of managing his own wheat bread sandwich business, while his mother hopes that at least he’d get to apply his culinary skills in a restaurant.
With Vico’s artistic talents, Cham doesn’t stop hoping for a better future for her son.
Cham said, “As parents, we would like him to experience and enjoy life like everyone else. He may have some limitations, but he has gifts more than anyone else. We believe in him so much and with God’s intervention, he will eventually have a place in the sun.” –KG, GMA News
For more details, contact AAAP by e-mailing firstname.lastname@example.org or email@example.com.
Photos courtesy of Association for Adults with Autism, Philippines