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Dad We Love: Adel TamanoThe lawyer and educator opens up about how his family is celebrating life with a child who has autism.by Lei Dimarucut-Sison .
Each person has a public image and a private persona known only to his family. Before we met Atty. Adel Tamano in person, we only knew him as Vicki Belo’s lawyer, a candidate for senator in the 2010 elections, and to Manilans, the former President of the Pamantasan ng Lungsod ng Maynila. What we found out during this exclusive interview was that he is also a devoted family man – so much so that he does not have any hobbies - and a father to 2 boys, one of them autistic.
On television, Atty. Tamano’s towering height, his demeanor and the social circle he mingles with can be very intimidating. His credentials seem a lot for someone who’s only turning 41 this October: former Spokesperson of the United Opposition, newly-appointed Dean of the College of Law of Liceo de Cagayan University in Cagayan de Oro, columnist for the Philippine Star, and former president of the Pamanatasan ng Lungsod ng Maynila. Very soon, he will also have his own public service show on ANC. To top it all, he still has his own private practice under the Kapunan Javier Tamano Law Office, and one would wonder, how does he do all that?
“I expect much from myself and from other people. I’m always learning new skills because I want to be productive. I don’t like mediocrity,” he tells us matter-of-fact-ly, then adds, “Plus, I have a strong support system at home. I have a good helper – my wife – and she allows me to do all these things.” A lover of Vampire novels, he humors us by confessing that there are only two people he fears: “God and my wife.”
One would think that with all the buzz he has created for himself, he is probably a social butterfly just like his famous clients. He begs to disagree. “I don’t really have a social life because when I got married and we had our first child, I focused on my family.” He does not feel deprived though, because it was his choice. And part of that choice is having a child with autism.ADVERTISEMENT - CONTINUE READING BELOW
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He is joined in this interview by his beautiful wife, Atty. Weena Kapunan, who fills us in the details of their son’s condition during the early phase, since Atty. Adel was taking up his Masters in Law in Harvard at the time of the diagnosis.“When I told Adel this, he would watch the videos he took with him of Santi and reassure me, ‘he’s perfectly normal’, then I’d tell him, ‘no, he’s changed’. I brought him to the doctor, who confirmed my fears. Santi was diagnosed with PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified). Now they call it Autism Spectrum Disorder”.
“The very first thing I noticed was that Santi lost eye contact,” Atty. Weena recalls of their first-born. “When Santi was a baby he was a very responsive baby, and then by the time he turned two, he just wasn’t responding to me anymore. It’s like he regressed, and I was wondering why. Some of my friends were saying, ‘nami-miss lang nyan si Adel’. I asked a cousin and told her that I’m a bit concerned with Santi, but they were saying, wala yan, and for my part wala naman akong basis for comparison”.
Atty. Adel admits that when his wife broke the news to him, he went through a period of denial, anger, and the rest of the Kubler-Ross stages of grief. “Whenever you have a child you dream that he or she will possess all the best qualities of the greatest personalities who ever lived, maybe a mixture of Jesus Christ, Michael Jordan, Brad Pitt, Albert Einstein, etc. But when your son is diagnosed with autism, you lose all of those. However, I think that because I was away in Boston at that time and pagbalik ko, nandun na yung diagnosis, it was not that difficult to accept anymore. I’m a very fatalistic person e, what can you do, nandyan na yan? We just had to do the best that we could since that’s the diagnosis. But perhaps it was Weena who carried that heavy load at that time and she made it easier for me.”ADVERTISEMENT - CONTINUE READING BELOW
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“I was in denial,” Atty. Weena admits. “When I brought Santi to the office and friends were asking what the findings were, I told them that the diagnosis is not yet complete, because in my head that’s what I made myself believe. The following day when I met with the doctor, I asked, ‘Are you sure that it’s really PDDNOS?’ I could tell that the doctor was having such a hard time making me see. He said, ‘Yes, I’m sure,’ and that was the only time it became real.”
“Everyone was sympathetic, but I noticed that apart from those, nobody was talking about it. Belatedly, I found out that the child of one of my good friends at the bank where I worked was also diagnosed with the same thing, and I only found out by accident. We were discussing what medicines we could reimburse as officers of the bank, and when I mentioned that my son has autism, she said that it’s not the same with her because her son has PDDNOS, and I wanted to say, ‘well that’s exactly what my son has.’”ADVERTISEMENT - CONTINUE READING BELOW
“I am very open about my son’s condition and I don’t want people to be uncomfortable about the topic, but people were not talking about it because may stigma pa din. Every time I speak to parents, I tell them that if they want society to accept their child, they have to educate people. How will that happen if they seem to be ashamed? They say, no, I’m not ashamed, it’s just that there’s a stigma. I say, that’s exactly it, we parents are creating the stigma ourselves.”ADVERTISEMENT - CONTINUE READING BELOW
“I also found out that a lot of my friends were in the same boat, or knew of people who were in the same boat. I have parents coming up to me saying, ‘I’m gonna tell you this only because I know your son also has it, but swear to secrecy that you won’t tell anyone.’ I respect it that you don’t want people to know, but I wonder why. Kasi the more you don’t talk about it, the more that people don’t understand what it’s about. Like when you’re in a mall and the child will start to shout and cry. If people aren’t aware about your situation they will think the child is a brat and that you are a bad parent. And I used to be that way when I was single, but now, my perspective has changed.”
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Living with autismADVERTISEMENT - CONTINUE READING BELOW
The couple describes to us what it’s like to care for a special child. “The first time I brought him to therapy, Adel was still in Boston, kaya buti my mom was there. It was heartbreaking. He’s crying and begging for you to comfort him.” Discouraged by how much Santi seemed to be traumatized by this incident, they had second thoughts about continuing with the therapy, but Atty. Adel stood firm. “I think you need to allow your child go through difficult times if it’s good for them.”
At 8 years old, Santi is now in Grade 2 at the Integrated Center for the Young (ICY) in Heroes’ Hill, where 25% of the pupils in each class are kids with special needs. He has a dedicated shadow teacher in school. Every week, he has 4 hours of occupational therapy, 1 hour of speech therapy, 4 hours of swimming with the occupational therapist, 4 hours of SPED, and 4 hours of home program. It’s a rigid schedule because “if you let him on his own, he regresses.”
The Tamanos spend about P80 thousand per month on Santi’s special needs, including therapy (P60 thousand), medicines (Etofenamate at P200 per day), skilled house help and gluten-free food. “We’re lucky that somehow we are able to afford all the therapies, but knowing this, we also have to work very hard,” says Adel. “I cannot be irresponsible about making financial decisions. We have to give up certain things because a big part of my salary goes to Santi’s needs. Maybe that’s why wala din akong hobbies. Some of my friends have gun collections, yung iba, golf clubs, o kotseng magara, I don’t have any of those, because I know may paglalaanan kami, my money is for my children.”ADVERTISEMENT - CONTINUE READING BELOW
Faced with this situation, the Tamanos didn’t plan on conceiving again so they could focus their attention and resources to Santi. That, and the fear of having another baby with the same condition made them think twice. Says Weena, “Initially we didn’t plan to have another child, but God knows better and we had Mike 3 years after Santi was born. We were still learning to cope with the condition, so I was very worried.”
Just the same, they had to face their fears. “I attended a conference on autistic children, and they were saying that if you have an autistic child, there’s an 18% chance that you would have another child with the same condition. If not that, it could be a different condition like dyslexia, ADD, etc., and at an even bigger percentage - about 68%! - so until now I still check on Mike, but thankfully it seems he’s ok.”ADVERTISEMENT - CONTINUE READING BELOW
Because Santi and Mike go to the same school, Mike is used to dealing with kids with special needs. “He’s a great support to Santi, he’s very patient and generous with his brother.” They had to explain the situation carefully to Mike, “kasi pag may kailangan si Santi we’re so giving, pag sa kanya, hindi, like one time we were in the car and Santi was throwing a tantrum and he started pulling my hair, then Mike’s hair. Mike was holding back his tears and was trying to act brave, and he was just about 3 years old.”ADVERTISEMENT - CONTINUE READING BELOW
“We tell him, ‘You know that Kuya has a condition, that’s why we’re not so strict with him.’ Even then, we’re always second-guessing if it’s the right thing to do, to lay all this on such a small child. It can both be physically painful and heartbreaking.”
Adel shares, “Children will always follow the lead of the parents. One of the reasons why Mike seems to be a good brother is because he also sees how we treat Santi. It’s easy to tell a child to do something, but ultimately he has to see that grounded in your actions.”
Because of Santi’s condition, they are preparing Mike to a future scenario where he may have to care for his brother. “Every year, our dilemma is whether to transfer Mike to a bigger school to expose him to a big environment and help him learn how to cope with pressures that are not there in a small school. But then we realize, if school is supposed to prepare you for life, then I can’t think of a better preparation than giving him this exposure.”ADVERTISEMENT - CONTINUE READING BELOW
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Coming to terms with autism
There was a time when just thinking about it or talking about Santi’s condition made Atty Weena tear up. “Even up to now, I’m very emotional. It’s a process … even when I say I have coped and I have accepted this, it’s a process we’re dealing with even up to now. Santi’s progress reports will sometimes say, ‘his academic capacity is now only 3 months delayed.’ – and then you become hopeful. Then, after 1 year, the report will say, ‘his academic capacity is one year delayed,’ and you think, ano nangyari? And then made-depress na naman ako. And you’re hanging on to these tiny things, these labels, and pin so much hope on what the doctors tell you – I’m sure they mean well, and for them it’s a very methodical approach.”
“Nowadays, it’s like, never mind. I worry, but I’ve learned to accept that there’s a good day and there’s a bad day. And you learn to live one day at a time and think, it’s okay, we’ll pass through this. So what if he’s not at par academically? So what if he’s forgotten to say “Philippines” or if he can’t recite “Panatang Makabayan”? Being a parent makes you realize what is really important. It just forces you to find out what your values are and what you want for your child. Now, we only ask one thing : is my child happy? If he is, then we are, too. And we’ve made peace with the situation.”
Atty. Weena tells us that acceptance became easier because of her husband. “Adel is a very stabilizing presence; when I start blaming myself for Santi’s condition he’d talk to me and make me forget these thoughts.”ADVERTISEMENT - CONTINUE READING BELOW
Educating the public
Weena and Adel feel that the public needs to be educated about autism, especially since the incidences seem to be rising. “The other day I was talking to a friend whose autistic son’s breathing was congested. She gave him medicine but suddenly nag-tantrum yung bata so nag-panic sya. She said what do I do, I can’t bring him naman to a pediatrician just because nagta-tantrum’”, but Weena advised her that she should in fact send her son to a pediatrician. “How I wish somebody was there to tell me these things. When Santi was diagnosed and I was trying to find out about it, there was very very little material I could find. Almost all of the websites were from the US, and most were highly technical. But now more information is available, and there’s even the presence of a local support group.”
“Recently we learned about a condition called Fragile X syndrome, and the doctors said Santi might have it. Classic symptoms include physical deformity (Santi has no physical deformities), but there’s actually a medicine for it, an antibiotic which costs only about $400 (P16,000). It’s not a cure but there’s a dramatic difference. What’s sad is that it’s not much, but still not many people can afford it.”ADVERTISEMENT - CONTINUE READING BELOW
She and a friend planned on starting a support group and reach out to our network of friends. She laments, though that unfortunately, here in the Philippines, people only pay attention when somebody famous or influential speaks up.
In their own way, the Tamanos support this cause by speaking about their experience at conferences. They are also helping out a group called Center for Possibilities which is an advocacy for special children, not just autism.ADVERTISEMENT - CONTINUE READING BELOW
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An unorthodox marriage
Her zest for life and sense of humor caught Adel’s attention when he and Weena met at a law office fourteen years ago. They were together for a year when, after passing the bar, Adel decided to teach in Marawi. After being apart for a year, he went back to Manila and married Weena.
But theirs is a highly unorthodox marriage. Adel, a Moslem, went against tradition and did not ask Weena, a Catholic to convert to Islam. “The culture is that if a Moslem man marries a Christian woman, she will have to convert, but I subscribe to the freedom of religion, so I didn’t require that of her,” says Adel. However, certain compromises had to be made: the kids are to be raised as Moslems, but will be exposed to both religions.
Adel says, “Most people get hung up on the fluff of religion, but when you break it down, ang daming commonalities ng values ng Islam at Christianity. The bedrock is the same – kindness, generosity. We say grace at mealtime with a hybrid prayer. We start with the Lord’s Prayer, then we switch to the traditional Arabic prayer before meals.”ADVERTISEMENT - CONTINUE READING BELOW
Weena says that “one of the hardest things I’ve had to do was to have my children grow up in a different faith, but talking about it and being honest about it helps tremendously. We just want them to grow up to be kind, honest men, whatever their religion is. Adel is very religious. He just doesn’t wear it on his sleeves, but he lives the values of Islam.”
“With me naman, Adel is very understanding. He encourages me to practice my faith and hear mass. I can eat pork. I guess some people will criticize us, but Adel is very logical about it.”
“There’s no magic formula, I get on her nerves, she gets on my nerves, but this setup seems to be working for us,” Adel adds, “and I’m still very much attracted to my wife.”ADVERTISEMENT - CONTINUE READING BELOW
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His own childhood and fatherhood style
On Adel’s childhood, he has this to say: “I grew up in a family that’s very old school. I had an absentee father who was also a bit of a perfectionist. It wasn’t a perfect father-son relationship, so with my own sons I really vowed to do it differently, to be a different father.”
“I think that being a father requires integrity. For example, you tell your kids that you love them, but then when you’re home, ang sungit-sungit mo kasi you’re so tired from work, so walang integrity yung sinasabi mo. How can you pass on values to your children if you don’t live by them?”
“Politics is the biggest mistake of my life,” Adel declares, referring to his failed bid to the Senate in the 2010 elections. “It was a mistake because it took away time from my family. I felt I had to cheapen myself in a way. There were certain integrity issues. In the end I broke e, because I was being asked to do something that was against my integrity. I had to say No, and I think that was the time I ended my affair with politics.”
On why Adel decided to run for public office, Weena says that “he was getting frustrated with public officials who are inefficient, and he felt so underused even if there’s 3 or 4 things going on. He was very idealistic. We didn’t have resources but he was running on his hopes for the country.”
A year has passed, but we still sense a tinge of regret in Atty. Adel’s voice. “When you run for public office, you make yourself vulnerable. You put yourself in a position where any Tom, Dick and Harry can criticize you. And these are the people who cut lines, who won’t follow rules, yet they moralize, and you can’t even answer back. You just have to take it. It was so thankless.”ADVERTISEMENT - CONTINUE READING BELOW
But actually, a lot of good things came out of it, like I know who my real friends are. Some people whom I thought were my friends are no longer my friends because of certain decisions I made. My mistake is that I forgot that they are, first and foremost, politicians, and politicians act a certain way.ADVERTISEMENT - CONTINUE READING BELOW
Some people nagkaron ng sama ng loob sa akin, like Senator Villar probably, because I did not agree to something. But I really believed in his skills and vision for the country, I believed he was the one who could turn this country around.”
He continues, “some kasi have a good vision, but their ambition gets in the way. Yung iba mahilig sa double speak, they say one thing and do another, wherever the winds of popularity is blowing towards. I personally think that you cannot run a country that way, precisely because leadership entails making unpopular decisions and being strong enough to steer your country towards that painful unpopular decision.”
“It takes a certain type of person who can be a politician, and I’m not that type – not because I’m better or worse than them, it’s just that I’m different. As they say, you have to want the position so much that you’re willing to do anything for it. Me, I purposely avoided talking about Santi’s condition when I was running as Senator because people might think I was using the situation to my advantage.”
“I’m not running for public office anymore. It’s good to be a private citizen. I felt some things were done to me unjustly, but you learn from it and accept it.”ADVERTISEMENT - CONTINUE READING BELOW
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Atty Adel’s advice to parents of young children is, “Have your child checked the earliest that you notice anything out of place. Early intervention is so much better, as with Santi, because Weena had the foresight to have him checked.”
“I think God has given Santi to us for a specific reason, and we have lessons to learn. I’m very thankful for Santi. Perhaps we wouldn’t be as strong a family unit if Santi wasn’t autistic. Me and my wife, we try to finish work as soon as possible so we can run home and be with our kids, but maybe it would be a different story if circumstances were different. The Koran says that God will provide for your children, and that is something that sustains me in my relationship with Santi.”
“Some readers who are pregnant now will get very preoccupied thinking about what if the same thing happens to them – don’t. If it happens, just embrace it. Love your child, accept your child. Set aside expectations. Perhaps if you do that, your relationship with your child may even surpass your expectations.”ADVERTISEMENT - CONTINUE READING BELOW
Photography by Ben Lim