AUTISM: MUSIC FROM THE INNER HEART
MANILA, July 16, 2004 (STAR) By Almond N. Aguila - I thought i was meeting rain man. That was my take on Thristan "Tum Tum" Mendoza’s musical genius. The idea was intriguing but proved simplistic and off tangent.
"My son is not an autistic savant," clarifies Belina in a voice so soft and gentle it can only come from a petite woman. "He has asperger’s disorder."
Instead of Rain Man, I should’ve been thinking of such famous people as Michelangelo, Andy Warhol, Albert Einstein, Sesame Street’s Bert, The Simpsons’ Lisa Simpson, Bobby Fischer, Alfred Hitchcock and Isaac Newton. The internet suggests an even longer list of impressive names possibly sharing the same condition. The May 2002 issue of Time called this the Geek Syndrome since recent studies show this is why most geniuses exhibit unusual or anti-social behavior. Asperger’s disorder refers to a mild form of autism with a tendency for superior intelligence and exceptional creativity.
Only 14, Tum Tum has distinguished himself as a marimba player. He has shared the stage with the Philippine Madrigal Singers, Regine Velasquez, Jim Chappell and the late Tadao Hayashi. His first album, recorded with pop-gospel artists such as Jose Mari Chan, Jamie Rivera, Nonoy Zuńiga and the Philippine Madrigal Singers, will be released soon. It contains inspirational Christian music. Proceeds from the sales of his CDs and tapes will go to the Autism Society of the Philippines.
The Mendoza living room is surrounded by plaques and awards he received as early as age eight. He is a two-time grand prize winner of the McDonald’s Philippines Makabata Awards. The University of the Philippines’ President’s Committee on Culture and the Arts named him their gifted child prodigy in 1997. He is the youngest and the only special child among the recipients. In 2000, he earned the Millennium Dreamer’s Award from Walt Disney Company, McDonald’s and unesco.
A year later, he was back in the States accepting the Rosemary Kennedy International Young Soloist Award. He played his marimba at the John F. Kennedy Center for the Performing Arts in Washington, DC.
International media has shown great interest as well. He has appeared on CNN, Nickelodeon and NHK Japan.
Locally, Tum Tum’s story has been told over and over again. But today’s interview is profoundly different. He lost his father a year ago to a massive heart attack. Vic Mendoza’s absence creates a void even Belina cannot fill. Though she speaks for and about her husband, promoting their son’s abilities to the world has always been his role.
Vic was the stereotypical stage father, Belina insists. His chest swelled with pride each time his son went on stage. But between the two of them, she was the least surprised that Tum Tum would go this far. Both took it hard when psychologists introduced autism into their lives.
"From the start, I knew our son was special. I guess a mother knows," Belina announces. Her maternal instincts have always served her well. In November 1989, the expectant mother had a strange feeling something was terribly wrong with her unborn son. Her obstetrician believed she was overreacting until he checked the baby’s heartbeat. It was so dangerously weak that an emergency caesarian was performed. Tum Tum came into the world with his umbilical cord twisted around his little neck. The clock ticked as everyone in the emergency room waited for his first wail. The delay could have made him a vegetable, but Belina’s first-born beat his deadline by a minute. "Parang it was God’s will for Tum Tum to live," says his devout mom. "He was in the incubator for a few days. He appeared a normal baby except that he was very asthmatic which some doctors are now associating with autism."
Back then, autism was not a concern in the Mendoza household. Tum Tum brought so much joy to his parents that everything seemed normal. It was only when he was a toddler that Belina started noticing unusual behavior. "He avoided eye contact and did not develop communication skills. He was able to utter his first word at the appropriate time, but he wasn’t communicative. He also wasn’t affectionate," she recalls.
Her suspicions grew stronger with the birth of her second son. Rainier’s development gave her a comparison for Tum Tum. She voiced her concerns first to her husband and later to her son’s pediatrician, but they did not share her worries, convinced that the boy was slightly delayed but otherwise healthy. In fact, what he lacked in social/communication skills, he more than made up for by reading and writing at the incredible age of two and half.
Belina’s nagging fears persisted. She continued to observe Tum Tum as he started pre-school at the Philippine Montessori. Within two months, the school administration confirmed there was something terribly wrong. He was hyperactive and avoided playing with other kids. Belina got the news she dreaded–she was told to take him to a psychologist.
Getting him diagnosed was neither easy nor quick.It took the doctor two sessions before saying anything. "He was just observing our son. But I had suspicions na nga. It felt like the Lord was preparing me for what was coming because I was getting information about autism from unlikely sources. We watched the movie Son Rise‚ which was about a boy with autism. What struck me was that he was fascinated with spinning objects. Tum Tum was exactly like that. I could not help being bothered. I had sleepless nights."
Nothing prepares you for the inevitable. Belina asked point blank if her son had autism; the doctor said yes. What happened next was something she could only describe in Filipino: "Gumuho na ang buong mundo namin. (Our entire world crumbled)". A second opinion did not change the bitter reality.
Despite the dismal predictions, Belina never lost hope. She felt no doctor could limit her son’s abilities. Vic wasn’t as confident. "I was very sure that my son had potential. That’s why I felt so bad when doctors were telling us: ‘Hanggang dyan na lang siya, ’wag na kayong umasa pa.’ For me as a mother, I could not accept that. I knew my son could do more. Instead of giving up, I became a fighter by being more supportive of Tum Tum. But back then Vic felt resigned that our son wouldn’t go far. That’s why he was surprised at Tum Tum’s achievements. He later made up for it. I keep reminding Tum Tum that he was blessed with a good father."
Admittedly, the early days were anxious times. The couple sought as much information about autism as they could. Most helpful was a 10-year-old girl with autism. The experience was quite moving. Belina recounts: "Seeing her gave me comfort even if she was climbing up and down the sofa like a small child. The only thing I could say was: ‘I’d be happy if my son could be like her.’ Her parents were quite accom-modating, answering a lot of our questions. This couple also introduced us to the Autistic Society of the Philippines, who gave us the support we needed."
Before they could even exhale, Tum Tum began his numerous therapies (speech, occupational and behavioral modification sessions). Tremendous improvement is how Belina describes the effect on him. To other parents, she highly recommends not only early intervention but also the complete commitment of at least one parent. The responsibility of being the primary care giver was overwhelming, but she accepted that there were sacrifices worth making.
Belina shamefully admits she was unconsciously a neglectful mother to her other son who was only eight months old when the family went into crisis. He grew up envying his kuya. Little Rainier was so upset by the unequal attention (from his parents as well as from other people) that he wanted to destroy his brother’s marimba.
Seeing the very real insecurities of her second son was a wake-up call. Belina again did research. What she found most helpful was the book What About Me by Stuart Silverstein whose brother and son were both autistic. Understanding the struggles of Rainier pushed Belina to spearhead the asp’s Sibling Support Group in 1995. She has conducted workshops for processing the feelings and expressing the needs of other kids. Envy and neglect were common problems. The support group, she insists, reflects the depth of her remorse. In the future, her second son will know it wasn’t all about his kuya.
Things improved between her two boys when she learned to distribute her love and attention to all her kids (aside from her sons, she has two daughters–Via, 8 and Reena, 5). The turning point actually came only recently, when Rainier stepped out of Tum Tum’s shadow. He plays the cello in the Awit Children’s Chamber Orchestra and also excels in school. "He is more understanding and patient now. I was observing him recently and I could see that he is genuinely happy for his brother," she reports. Rainier has been consistently in the top three of his class in Xavier. Like his brother, he too has received commendation for his mastery of Kumon math.
Meanwhile, Tum Tum continues to get scholastic honors at Reedley International School in Pasig. His mom should be credited for fighting for his right to mainstream education. She found partners initially with Philippine Montessori and later OB Montessori. The latter seemed a perfect atmosphere for Tum Tum since it had just produced its first autistic high school graduate.
Like academics, music was a constant in Tum Tum’s life. The first words he ever wrote were the lyrics of a church hymn. He did so from memory. Teachers were later astounded by his quick replication of musical pieces. He was born with perfect pitch which allows him to excel in practically any instrument he fancies.
The Philippine Montessori’s focus on music provided fertile ground for his growth. During his first performance in school, he played the drums, cymbals and temple block all at the same time. At the World Youth Day Celebration, he played the metalophone as lead musician. Moving on to the marimba was a natural progression since the school considered it their prime musical instrument. It only took him months to make it his forte.
Eventually, Tum Tum surpassed his music teacher at Philippine Montessori. The Mendozas were told to look for a teacher capable of honing his growing talent. Playing the marimba was a dying art. At 75, Alba Samano came out of a 25-year retirement for this star pupil. And when the accolades came, others took notice. Tum Tum’s passion was infectious. New marimba teachers surfaced to meet the demands of new marimba students.
"We never forced him to play the marimba," his mother denies they were pushy parents. "He enjoys the feeling of elation when he performs. He likes being appreciated and recognized on stage. Sabi nga nila, he seems very different when he receives awards. He is so confident and so proud. Feel na feel niya everytime nakaka-receive siya ng award. And that motivates him to do more."
Last May 15, Tum Tum regaled his audience at the International Convention Centre in Brunei. The charity concert entitled "A Gift of Music" was for the benefit of the Society for the Management of Autism-Related Issues in Training, Education and Resources (smarter). In attendance were such VIPs as Prince Abdul Fattaah and Prince Abdul Qawi, Executive Deputy Chairman and ceo of QAF Brunei. Belina spoke before parents to inspire them to look beyond their children’s autism. smarter was pleased with the results of their visit, and have invited them to return next year.
The Mendozas would’ve gone to Brunei last year if not for Vic’s sudden demise. The first year of mourning passed only last March. Coping has been difficult for all of them, but Rainier seems most affected by the tragedy. Belina and youngest daughter Reena never regained the weight they lost after his death. Tum Tum does not display the outward signs of grief but he suffers in his own way. The Brunei concert was his first big marimba performance without his father. It was during the grand affair that Belina got a glimpse of Tum Tum’s pain. "He kept saying to me: ‘Papa’s not here anymore.’ Inspite of all the crowds that appreciated him, he missed his father."
The housewife of 16 years is now the sole breadwinner and single parent. Belina responds with silence when asked about Tum Tum’s future. In two years, he will graduate from high school. Has she planned for college? For the first time in the two-hour interview, she has nothing to say. Even when the words finally come, there is no easy answer.
"We already knew long ago that Tum Tum was meant to take up music. But Ruby Salvosa, his piano teacher and accompanist, told us that he would not get the proper training in the Philippines. His ability is even beyond what the UP Chamber of Music can handle. She recommends that we look for a school abroad. But I don’t know how that would be possible. We can’t afford it," she says helplessly. "I have to earn for the entire family now. Besides, we will all have to move if he studies abroad because he needs my supervision. Ruby says wala na siyang pupuntahan dito. And she was warning me that music schools abroad are already auditioning students as early as now."
For now, Belina’s goals are more short-term. She is saving up for an expensive computer Tum Tum has his eye on. This might, in fact, be the answer to her prayers: It may be difficult to send him to a music school abroad, but a course in computer science is not unrealistic.
As the interview winds down, Belina apologizes profusely for her son’s aloofness. His anti-social behavior is actually a source of stress for the pre-teen. She confides that Tum Tum’s fervent wish is to have friends. Unfortunately, autism gets in the way of developing relationships. The inner turmoil is heartbreaking.
One time, the accomplished young man asked: "Mama, why do you think God allowed me to have autism?" There were no easy answers. Though she tried to explain how sometimes God uses our weaknesses to create opportunities, in her heart she was asking if her son was doomed to a life of sacrifice.
"I later asked if he thought he would get all these opportunities if he weren’t autistic. Would he be able to go to Brunei? And in Brunei, I showed him how he affected the lives of others. He saw how parents cried after my speech," Belina says, still unconvinced the issue was laid to rest. "How can one really answer that question?"
Reported by: Sol Jose Vanzi
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by PHILIPPINE HEADLINE NEWS ONLINE
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