One of the most touching, 10-Kleenex tissue movies I’ve seen was “My Sister’s Keeper,” starring Cameron Diaz, who plays the mother of a dying teenage daughter. Cameron has another younger daughter, conceived so she could give her sister bone marrow and other tissues to give her a new lease on life. Her younger daughter is finally tasked by her parents, her mother in particular, to give up one of her kidneys to save the life of her dying sister, and she (the younger sister) goes to court to contest that apparently involuntary donation.
The movie, where the mother’s life revolves around her sick child, came to my mind during last Tuesday’s Bulong Pulungan forum at the Sofitel Philippine Plaza, which featured the Autism Society of the Philippines. It was founded in 1989 by 11 mothers who needed a support group to help them cope with the challenges of having a special child.
Some mothers with special children devote virtually their entire lives to the child with special needs. One sibling of an autistic child was reported to have said in his jealousy, “I wish I were autistic, too, so that Mom will pay more attention to me.”
This is not to blame the mothers and fathers who favor their special children with more time and affection. During the forum, Dang Koe, who has a 15-year-old home-schooled autistic son named Gio, said one parent must really virtually drop everything to care for a child with special needs. Dang, for one, chose a career that enables her to work part-time (she’s a motivational speaker).
For each one of us, really, is our brother’s keeper. And if your “brother” happens to be your own child, then how much more the responsibility to take care of him?
Some of the most interesting people are those who confront what is not “typical” in their lives with grace and with an utter lack of resignation to what could be a source of self-pity.
At last Tuesday’s forum, another guest was Carmel Almendrala, who has a 40-year-old autistic son now gainfully employed as an encoder at the Philippine Information Agency.
Dang and Carmel are two of the 11 mothers who banded together in 1989 to form the Autism Society. They share that most mothers who find out they have an autistic child initially feel “like your whole world has come to an end... all the dreams and hopes you have for your child seem shattered.” But those who wrest control of the situation from the monster of hopelessness realize that having an autistic child (or brother or sister) is not a tragedy.
From 11 members, the Autism Society now counts 6,000 families as members. According to Dang, one in 150 children has autism spectrum disorder (ASD). Autism typically appears during the child’s first three years and is four times more common in males than females.
Forum moderator Deedee Siytangco shared that her grandson Monchu is an autistic genius — he is a math wiz. His parents only realized he was autistic because he spoke later than most children.
Carmel’s son Michael knows the middle initial of all the people in his division at the PIA, and he knows what each and every initial stands for, e.g. “R” is for Reyes. A lot of girls are attracted to him, but he sometimes makes playful noises (like the sound of a machine gun) after watching movies and this surprises his admirers. Dang says autistic children and adults look “typical” that’s why it is hard to tell that they have special needs and unusual behavior.
As to the options open to Michael, who once attended a Special Olympics in Dublin, Ireland organized by the late Eunice Kennedy Shriver, Carmel says, “We have never closed any door or window to my son” just because he is autistic.
Though some autistic children are high functioning like Monchu and Carmel’s son Michael, 60 percent of autistic children may also show signs of mental retardation, according to psychologist Dr. Felipe Balingit. Thus, it is important that their autism is diagnosed early because the retardation could occur after birth and could be avoided.
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Dang reports happily that awareness of the needs of autistic children has grown since the society was founded in 1989. She reveals that SM Malls actually invite the Autism Society twice a year to orient 15,000 of their frontliners in 23 SM malls about autistic mall visitors, so that they will be given special treatment and not be shooed away when they make unusual noises or movements. Some autistic children like flapping their arms (like wings) and rocking themselves while seated.
“Usually, guards are vigilant about people in wheelchairs and blind people because their handicap is obvious. But since autistic children and adults look typical, it is sometimes hard for others to understand their behavior,” says Dang, who relates the story of how her son was denied access to the toilet for the handicapped until a janitor who attended a seminar given by the Autism Society urged the caretaker of the toilet to let them in. Dang then overheard the janitor explaining to the caretaker what an autistic child is.
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Dang says mothers in her position worry about who will care for their autistic children when they’re gone. Thus, she encourages those with special children to have other children in hopes that they will be their brother’s keeper. She points out that because they lead stress-free lives, autistic children have a long life span.
There is a belief that families with a special child are “binubuenas.” I think the “buenas” that comes to family with a special child is more than luck or a compensation from God for having a special child. Though I don’t have a special or autistic child in my family, I have seen how having a special child in the family makes people more loving, more patient, more resilient, more hardworking, more creative. In other words, the special child gives them the everyday training and impetus to be successful. The special child becomes the wind beneath their wings.
Talking about luck, let me quote from an article in the Autism Society’s newsletter by Amaris Cabason, whose brother Vinz has borderline autism.
“I thank God for how Vinz’s condition reminds me of innocence, and how easily we lose it or taint it as we grow older. It is not just the state of blankness or openness a child has that needs to be filled; but the bliss of constant amazement and curiosity.
“Never holding grudges and easily saying ‘to forgive is to forget.’ Asking questions and depending on Mom or Dad for answers instead of shutting them out from our life as soon as we become teenagers...
“It’s all those things — or rather the absence of it — beautifully woven and protected by innocence. That, sometimes, makes me think, that perhaps, we are the ones who missed out on what it means to be part of ‘their world’... and that they are the lucky ones.”
For all the lessons their “brother” has taught them... those who are their brother’s keeper are truly blessed.
(The Autism Society will hold its national conference on Oct. 24 and 25 at the SMX Convention Center. For inquiries, call 926-6941 or 929-8447.)
(You may e-mail me at joanneraeramirez@yahoo.com)