Thursday, May 21, 2009
ARTICLE 20. a SPECIAL CHILD is a SPECIAL BLESSING. PART 2
PART 2
There were bigger surprises in store for us when we discovered that *Evan was autistic.
The biggest one was the fact that there were so many of us! There are millions of families with special children with very challenging, special needs. I think of us as a chosen people who must live lives less than ordinary.
Remember that movie of Marlee Matlin? The movie Children of a Lesser God. It presents the concept of a god who supposedly created deaf-mutes like the character Matlin played. I had to kill that thought. I had to believe that the same God who made children beautiful is the same God who gave us Evan.
I had to remember that Evan is a beautiful child, a special gift we are privileged to have been given.
And thankfully, even then and mucvh more today, my whole family believes this, nay , embraces this the same way we have embraced Evan’s special-ness.
At the beginning though, you can’t imagine how alone you feel when faced with the reality of your autistic child’s situation. In counseling and support group meetings for autistic parents in the US, I remember how one facilitator tells parents that according to statistics , 70% of them will get divorced in 3 years (or was it more ? I forget.). It’s just that hard to take care of an autistic child, especially during the early years.
Some couples grow apart. Some families break down. But Evan became the glue of the stickiest, toughest variety---think industrial strength--- that bound our family together.
As soon as we found the right doctor for him, we were on course, still with my sister at the helm.
Placing him in a special school was first priority. But I must admit, the waiting list was long. And one school we chose for Evan was a mistake because we discovered that one teacher there laid a hand on him. Of course we pulled him out of there, and when we finally found the best school for him, we felt that a major thorn on our side had disappeared.
Special education teachers are a special breed. My texter friend Krineza, an incoming college freshman , who is determined to become one herself will belong to this especially blessed tribe of people. And like them, she will have some pretty unusual experiences.
She will discover that the most basic things a regular child can do is a monumental task for a special kid..
Even the gentlest, most inspired parents are just not equipped nor trained for taking care of a special child. They had to be trained themselves, for they had to follow through, like how my sister and brother in law did with what Evan’s SPED teachers were training him.
Evan’s school did him a lot of good. Speech therapy worked wonders for him. He was picking up skills and much of his behavior was being modified. Alongside with ours.
It was a really tough uphill climb. Before Evan started school, his unacceptable behavior included smelling people ‘s feet, eating only one kind of food, snapping his fingers all the time, jumping up and down even on ledges, (autistic children have no sense of fear), and so many others more serious then, but thankfully today are but memories.But we were all there all the time. We were his cheering squad, his 911, his number one fans. We wouldn’t have missed it for the world, especially since a lot of the memories we gained were not at all unpleasant.
I remember attending one birthday party in Evan’s school Evan’s classmates were also special, and I remember thinking that you would not find anywhere else a more supportive, more loving set of parents than the parents in Evan’s class. They wanted their kids to have everything regular kids experience, and obviously a birthday party is top on the list. But in this particular birthday party, all the guests, even the celebrant , were all crying. All were bawling their hearts out for they wouldn’t eat the birthday food. You see, autistic children are creatures of habit. They remember what they eat, when they eat it, and the universe can implode tomorrow for all they care, they will still have rice and tocino on Monday, rice and tinola on Tuesday, etc, etc, you get my drift. It was the same with these kids. They wanted their own baon. In the spirit of the occasion, the parents bent the rules a little. They gave in and allowed the kids to eat their own “baon.” Guess what, the kid’s “baon” were mainly hotdogs, the same food as the “handa”. But did a single child touch the hotdog prepared on the party table ? Nah.
Evan has come a long , long way from that child who wouldn’t touch any other food but his own baon of hotdog, from that child who had speech problems, no social skills,
who threw tantrums and wept when any little change disrupted his life.
Evan is no longer alone in his own little world.
For starters, Evan is in high school. He has been mainstreamed for some regular subjects, he has friends, he loves going to the movies with his dad (but he hasn’t lost his penchant for memorizing : he has committed to memory all the movies he’s seen, when he saw them, and where, and he has also memorized the schedule of HBO). He also has his own favorite food these days---and you can be sure it’s not just hotdog. His world is no longer as “shut” as as it was before. One fine day, my son who has always complained that Kuya Evan never plays with him, tried for the 1000th time to throw a ball at Evan, in an effort to make him catch it. That one fine day, Evan did catch it, and even threw it back, not just once but thrice! We’re playing Mom, my son shouted with glee, and that is one family milestone which gave us such joy.
Evan has also learned to express himself and his feelings. One time when we were visiting him, my son was especially rowdy, making a ruckus while Evan was doing his Filipino assignment. Evan got so exasperated that he wrote two sentences that were “pasalaysay”: “Si Anton ay malikot. Si Evan ay mabait.”
I could have added to that. Si Evan ay matalino. Si Evan ay mapagmahal. Si Evan ay mahal namin dahil siya ang aming special child na isang special blessing sa aming lahat.
I know that the parents and extended family of special kids need greater patience, strength and perseverance. We all need bigger hearts, we all need bigger minds.
A new friend, a texter named Ted Ruiz shared that having a child with special needs could really be a challenge. But in the end, you need only remember that though their bodies are physically challenged and their minds limited, these bodies are only temporary. Their souls are intact and will live forever. And that is one thing for sure that special kids, like my high functioning autistic nephew Evan, have in their corner. Their souls are pure. They are angels on earth. They are innocent little children forever.
Definitely, they are not children of a lesser God, but a greater one who knew exactly to which parents He should give them. It makes such awful good sense, one wonderful realization that makes you exult at how smart the One up there really is.
There can be no one else, and no one less…but special parents for special children.
BOOTS MA. GARCIA SISON IS A WIFE, MOTHER, DAUGHTER , SOCCER GROUPIE AND ADVERTISING CREATIVE DIRECTOR , MORE ON SOME DAYS THAN OTHERS. IT WAS HER TWELVE YEAR OLD SON WHO THOUGHT OF HER COLUMN’S NAME.
FOR COMMENTS, KINDLY TEXT 0920535 5053.
article 19. A SPECIAL CHILD IS A SPECIAL BLESSING,PART 1
I think Evan* is special, my sister told me.
Of course he is special, I retorted. All children are special.
No , special-special. That kind of special, my sister persisted. Specifically, I think he’s autistic.
I could hear the tears in her voice over the phone. That was the exact moment that a chapter in our lives ended---it was curtains down, the end. From then on, our world just wasn’t the same perfect one it was just a few minutes before I got that fateful call.
How do you take care of an autistic child?
I have never had any personal encounters with autistic children before .But I do remember seeing a TV movie when I was still in college , and I remember that in that story, the child overcame his autism with the help of his mother. I also knew that the mind of an autistic child was differently “wired”. Autistic children were said to live in a world of their own, mainly because they perceive the world differently. I remembered also that just a few years back, Rainman was such a big hit, and that movie alone must have opened the eyes of the world to what autism is all about. Dustin Hoffman was autistic in that movie, but he was also an idiot savant, for he was psychologically challenged but he had genius as well. Was it possible that our own family was facing this kind of a challenge ? I was at a loss for words. I didn’t feel adequate with what I knew. I didn’t know what to say to my sister. But it turned out that she had a lot to tell me, for she was watching a medical program that afternoon, and a doctor was being interviewed regarding the condition.
The good doctor had enumerated and explained fully the 14 or so symptoms of autism. As he went through the list, my sister got more and more worried, because she realized that Evan* had more than 12 of them.
He was echolalic. He could never answer even a direct question. What he did was that he “echoed” them. For example, if you ask him, Do you want hotdogs, Evan? --- he’d answer, Do you want hotdogs, Evan.
He engaged in “unusual play.” He never played cops and robbers, Batman and Robin,
or raced cars or engaged in hide and seek. He was engrossed with batteries and rubbing alcohol.
He also had a fetish of sorts. He liked smelling our feet. Which at first was funny and made us giggle except when he insisted on doing it even in public. Everytime we refused, he cried inconsolably. Clearly, something was not right.
He could never point at something using his own finger. What he’d do was that he’d take somebody else’s arm and use that to point at the thing he wanted.
He threw such huge tantrums when you deviate from his routine. Like one time, my sister decided to take a short cut driving home and instead of turning left, turned right. Evan shrieked and screamed and howled, and he wouldn’t stop, and wouldn’t let anyone hug him or comfort him. He wept and shouted and bawled , like his little heart would break, which reduced us to tears and to such a feeling of helplessness. Nothing could stop the rage Evan must have felt at having his world turned upside down. For us, it was the longest ten –minute drive home ever.
Another symptom I remember is that autistic children are “aloof.” My brother –in-law used to call Evan , suplado. That’s because he will never turn his head to look at you even if you call his name.
And he wasn’t much of a talker. He used stock phrases. He would never launch into a story of what he’s done or said. He never initiated a conversation.
But my sister already had a plan of action. She had picked up a term from that program, and it gave her focus: something could be done about Evan’s autism : EARLY INTERVENTION.
Early intervention. It became my sister’s anchor, and it kept her steady as she took the lead. While she led , we followed. If not for her, the rest of the family would have been too stunned to do anything about Evan.
I must admit though that I was the one who found it hard to accept that Evan was autistic. In my eyes, my nephew, my inaanak was---nay , is--- and will always be perfect.
All the strange things he did in the past, I called them wonderful and creative. When he played with batteries and put one small one beside a big one,the looked up at me and said, Mama! Baby ! -- I felt such joy that I must have crushed him in my arms. And I gushed over the fact that he saw something different in just a pair of old batteries—it was like seeing the world with a different set of eyes!
There was one time he was bored while my husband and I were asking him to spell words. We asked him to spell cat, and he spelled c-a-t very unenthusiastically. Boy, we said, and again, with hardly any feeling, he spelled, b-o-y. Then , suddenly, he sat up and asked my husband, Ninong! Spell NEWSWATCH. My husband’s jaws fell. Okay, Evan, spell NEWSWATCH. And he proceeded to spell it , nay, shout it joyfully. Then he said, spell BANGKOK! SPELL SCENE! SPELL JURASSIC PARK! SPELL TOYOTA! SPELL MITSUBISHI!
He spelled them all perfectly. My newphew’s a genius , I told my husband, my sister, her husband, my friends, our neighbors, until the whole family must have spent the whole night babbling about Evan’s singular feat.
And what about that time he recited 4 or maybe 5 digit numbers, in succession, and we were all mystified, for when he’d reach the number 1592, he ‘d grin and do a little jig. My husband explained to us that the numbers were multiples. Then my sister discovered that the number were the dials on the car radio.
I was prepared to argue with whoever doctor we were going to consult about Evan’s condition. I was going to tell him that no way is my nephew autistic.
I was the one in denial. But my sister was the one with determination.
She was going to get help for Evan.
Little did I know that we were in for bigger surprises.
ON MONDAY, PART TWO OF A SPECIAL CHILD IS A SPECIAL GIFT.
*I changed my nephew’s name to protect his privacy
BOOTS MA. GARCIA –SISON IS A WIFE, MOTHER , DAUGHTER, SISTER , ADVERTISING CREATIVE DIRECTOR AND WRITER, MORE ON SOME DAYS THAN OTHERS. IT WAS HER TWELVE YEAR OLD SON WHO THOUGHT OF HER COLUMN’S NAME.
TEXT MESSAGES WELCOME. PLEASE TEXT 0920535 5053
article 18 in my column : ARE BAHAY KUBO & LERON LERON SINTA DEAD ???
It’s not that we’re a dying breed. It’s just that our native Filipino songs are dying a slow, painful death. Which inevitably leaves large, gaping holes in our oral tradition.
This thought disturbs me a lot.
Maybe it’s because these songs are just NOT sang in school anymore. Or hardly, rarely, if ever . I can understand that somehow the Amy, Suzie and Tessie of my childhood has evolved and morphed into a new version that features Nanay, Tatay , gusto kong tinapay, but somehow, the Filipino songs of my childhood are slipping into obscurity.
But then, I only got a heads up on the various changes in our grade school education when my own kid started school.
And the changes, they’ve been aplenty.
For one, I had to explain to a director-friend that the Filipino alphabet is no longer just composed of A, B, K, D , E ,G , H ,I, L , M, N, NG, O, P , R, S , T , U , W , Y.
And I only found out when my son started Gr. One. Before his classes started, I flipped the pages of his school books idly, more for curiosity than for enlightenment. My eyes popped open when I opened his Filipino textbook . Right there on the earliest pages was the new Filipino alphabet. And it includes C, F, J, N, X, Z. ( Am not sure if the Spanish hache is part, too). I was living under a rock all those years, and you can imagine how major a revelation that was to me. Of course, any grade school parent with a kid ahead of my own son would have known already this new alphabet. But 6 years ago I was still oblivious of the fact, and I can imagine that I wasn’t alone. After all, it took me to enlighten my director friend who has no kids in school.
Sadly, my memories of Don’t you go, don’t you go to far Zamboanga are also fading. So with Magtanim hindi biro, maghapong nakayuko, di ka man makatayo, di ka man makaupo.
And though I have wracked my brains for minutes, I cannot for the life of it recall the rest of this song. Manunugtug ay nangagpasimula, at nangagsayaw na ang mga mutya…
When I sang it to my son, he said, it’s beautiful mom, but where’s the rest of it?
Of course I am sure that somewhere in the Internet, or in one of the dusty bookshelves of the National Library is an ancient book that might contain all these songs. And CDs featuring these native songs recorded by the Madrigal Singers or some other stalwart in Filipino music might already have preserved them for posterity. Gladly , I will buy such a CD to help my own son learn the songs of my childhood, so that he too can one day sing it, hopefully to his own children.
For these songs to stay alive, we Filipinos must keep singing them. We must never forget these songs ( once we start forgetting, what else are we bound to forget ? our names? Our families ? Where we belong ?)
But there’s hope yet. After visiting his lola a few days ago, my son came home humming a little ditty that I faintly recognized. The more he hummed, and sang in some places, the more I knew it, until it dawned on me that he was singing, one day, hum hum hum hum… I saw, nakakita, one bird, isang ibon, hum hum, , lumilipad.
I laughed out loud! You actually know that , I asked him. Lola taught me , he said, as he proceeded to enthusiastically sing the whole song for my benefit.
One day, isang araw, I saw, nakakita, one bird, isang ibon, flying , lumilipad, I shot, binaril ko, I cooked, niluto ko, I ate, kinain ko, I sh_t, tin_e, ko!
The last line , for the benefit of those who are not in the loop--- simply mean that that poor dead bird became toilet humor, literally. In short, poop.
I almost died laughing.
Not the most politically correct song in the world, by today’s standards. Imagine how environmentalists would raise a howl at the line I shot, binaril ko---we just don’t shoot birds anymore, these are totally enlightened times! I had to tell my son that. Yet he insisted on singing the song again, even as he reassured me that mom, it’s only a song, I am not about to pick up my air rifle and start shooting tita Dodi’s lovebirds.
Of course I will have to correct my son. It is not only just a song. This one, and the others I grew up singing , wove the fabric of my identity as a Filipino. It not only got into my hair and my ears and my mind and my system, it made me Filipino. Nobody else but a Filipino would get the humor in this song, nobody else would be as amused at our penchant for translating our Filipino lyrics into English, or our penchant for rhyming even without reason, but a kapwa Filipino. Nobody would be able to recognize that there is such a word as leron, even if we can’t use the word in scrabble, or in any other sentence but leron, leron sinta, or even if the word doesn’t figure in any crossword puzzle right now--- not in our English speaking broadsheets and dailies anyway.
Nobody else but us Filipinos would be able to sing our hearts out to the words, sitaw , bataw, patane! Or feel a sudden rush of affection for the words Paa, tuhod, balikat, ulo, paa, tuhod , balikat, ulo. And only a Filipino will feel a catch in the throat , or feel his syes start to water, as the swell of pride and oneness in his chest overwhelms him at the sound of … Ibon mang may layang lumipad….
It’s our oral tradition. It should not only be set on type, recorded on tape or carved in stone, but also etched in our souls.
I intend to tell my son all these. As soon as he stops singing.
I cooked, kinain ko, I ate, kinain ko, I sh_t, tina_ ko !!!!
BOOTS MA.GARCIA – SISON IS A WIFE, MOTHER, DAUGHTER, SISTER, SOCCER GROUPIE , ADVERTISING CREATIVE DIRECTOR AND A PRETTY-GOOD BILLIARDS PLAYER, MORE ON SOME DAYS THAN OTHERS. IT WAS HER SON WHO THOUGHT OF HER COLUMN’S NAME. COMMENTS WELCOME. TEXT 09205355053.
MY TENTH ARTICLE IN MY COLUMN ; child labour in Advertising. :-)
When my son was a mere four year old tot, my producer –friend coaxed me into allowing him to voice for a public service ad.
Warning bells rang like crazy in my head.
Not only did he want my baby to voice the commercial, he also wanted him to be the talent in the commercial.
Public service naman eh, he winked at me. For the good of mankind.
What’s more, he argued, it’s not as if the boy doesn’t speak well. He’s also quite a head turner, quite good looking, my producer friend pointed out.
Flattery. The downfall of tyrants, even of the gods. I nipped it immediately in the bud. Of course my son speaks well, I said, but the script is in Tagalog---NOT easy for a boy --born to a Kapampangan mother and a Waray father--- but who believes himself to be a New Yorker! And as for good looking, hello, the storyboard calls for a child’s hand. To be even more precise, a child’s chubby little finger. Not even his nose, his eyelashes, the round of his cheek, nay, not even the shadow of his face will show in the commercial.
Public service ad naman eh, my producer friend repeated, smiling his best “sigi na” grin.
Brownie points in heaven.
That’s how I found myself a few days after in the recording studio with my 4 year old in tow.
So picture this: one very well-rehearsed 4 year old boy … one very determined producer, and one very demanding creative director (that’s me), at war with her indulgent mother persona (that’s me again).
Of course I was determined to get exactly the voice I’ve heard in my head from the very first day I wrote the commercial. One little sliver of doubt crossed my mind though as to whether my English speaking son could do it. But still, I was adamant: no special treatment--- even if the talent happens to be related to the creative person behind the script. I reminded my producer friend that let us be prepared to squeeze the lemon dry, even if it means having to make the talent deliver his lines the whole afternoon. Just don’t ….ah…I mean, don’t shout at him, okay. Don’t even think of raising your voice by a few decibels. Bawal ding panglakihan siya ng mata. And it’s not even because I’m his mother---I’ve treated all my other children talents this way , because I firmly believe that it’s easier to coax the best out of children through gentle instructions…or flat out bribery.
Easy ka lang, my producer friend said. Ako bahala sa kanya.
To his credit my producer friend was a gem at directing my son.
And both gentle instructions –and bribery, did come in handy. But more than anything else, what saved the day was my son, the four year old parrot.
Never ever underestimate the power of a parrot.
The boy who came to the studio with a Jimmy Neutron accent with a dash of Hillary Duff was soon talking like he was a stalwart of Filipino telenovellas.
Gayahin mo ako anak ha, said my producer friend. He’d deliver it, and my son would parrot him.
But it was when we asked him, how will you say it to mommy , in case daddy isn’t home yet ?
That’s when the magic happened. He spoke his line as only a four year old boy would say it--- with all the worry, intensity and sadness of a child waiting for a parent... He was earnest, as only a child longing for a parent could be earnest. ( in the commercial, the parent incidentally was never ever coming home, but my son didn’t know that---it was something that was left for the audience to discover) . And earnest was just right, for I didn’t want anything weepy or melodramatic. (When it comes to acting, I believe that if you cry too much, the audience wont).
See, my producer friend smiled. Told you he‘s a natural. The commercial shoot will be a walk in the park, my producer assured me.
And it was. Except for that one single moment when my son suddenly decided that he’s had enough of it, and announced to the director and everybody else on the set that thanks, but no thanks, I don’t want to push that dog tag into the frame anymore, because my mom and I are going to Glorietta already. Goodbye, it was nice knowing you.
And he walked off the set.
In a flash, my producer friend, my writer, my art director and the commercial director all fetched him right back. And made such promises that would have turned any 4 year old’s head (no wonder a lot of child talents ----more so actors, are spoiled!). Yes, yes, yes, the eleventh take will be the last take, and no, of course not, we won’t reach 12 and even if we reach 12 or …13 maybe…or 18 takes, we will definitely not reach 20 takes, so please come back or else your mom, our creative director will say to the producer , this was your idea, and will say that the child is now forever traumatized , the child will never recover from having had to toil at the tender age of four, and what’s more, he will forever wonder if it was his fault it had to be done again and again, and we should tell him that it was the fault of the lighting…and the rigging, and the props, or even the tenant’s next door, we should tell him that $#!T happens in a shoot, but don’t use that word , not in front of my son…and it went on and on, etc,etc. etc. Finally, the boy caved in at the promise of Timezone,
(Oh, but before I forget, since it was a public service ad, there wasn’t any talent fee, it was all gratis et amore. So in case you were thinking that there was anyway a carrot at the end of the stick, there you are, there were no carrots , not even a bit to nibble on).
All things considered, it wasn’t a bad shoot at all. In fact, it was a good one--my boy worked a total of less than four hours , (even the recording took only an hour), we had an early wrap and the commercial won an award. My son went on to voice other ads, and even appeared in a TV spot lately where hey, they actually showed his face! Today he is is an outgoing child, and can hold a conversation even with adults. No trauma there, not even the slightest hint. And that experience didn’t spoil him either, though he was promised heaven and earth for just going back to the set! On the contrary…he’s as normal as any kid in his circle of friends. Though I admit that more than one teacher has told me that unlike other kids, my son has no qualms speaking in front of a crowd, or stepping up when volunteers are required. Did that experience help build his confidence and help hone his public speaking skills ? I’d like to think it did. Even as I admit to myself that maybe, like a lot of other parents, my son’s appearances in such TV commercials was ---and is, more for his parent’s vanity than his own !
But still, our family’s own oral tradition is richer for the experience; we have yet to tire of telling, and retelling this story. Especially since my son always eggs me in the end:
“You made me work at the tender age of four???”
And I shoot back, “It wasn’t work, you didn’t get paid , remember ?”
BOOTS MA. GARCIA –SISON IS A WIFE, MOTHER, SOCCER GROUPIE , AND ADVERTISING WRITER AND CREATIVE DIRECTOR, NOT NECESSARILY IN THAT ORDER. IT WAS HER SON ANTON WHO THOUGHT OF HER COLUMN’S NAME.