Sometime in the near future, my husband and I are planning to bring Alphonse halfway around the world to attend a special autism camp. We’ve been preparing for this for months now, working on skills he will need to endure an intercontinental flight. Alphonse has never been farther from home than an hour’s plane ride and we’re unsure of how he will take to this long trip. Were this help readily available in the country, we would not even entertain any thoughts of plane travel with him. The logistics alone burns a big hole in the pocket, and with the economy going bad every day, we’re loath to convert our measly denomination into dollars.

Yet, at thirteen, we feel that adulthood is looming large over our heads. While the camp does accept young adults, we’d hate for him to have to wait for very long before we can see what else is out there for him.

I’m having second thoughts, though. Just the other day, the news reported of a child and his mother being forcibly removed (kicked off?) from an airplane. That the child is autistic only made my fears more real.

I don’t want to go too much into the issue of whether the airlines company was right or whether this was another case of autism discrimination.  I think much has been said against, or on the flipside, in defense of the actions of the airlines company and I would not be adding anything new to the discussion.

But I am appalled at the rabid and vicious reactions this issue has elicited from the population. Surprisingly, the greatest condemnations do not come from autism families, but from people who have little or no idea what autism is, or from those who consider autism as someone else’s problem. I’ve had to keep my tears in check while reading through all the comments posted in chicagotribune.com’s feature “Autistic Toddler Removed from Plane.”

The worst ones are those who feel that autistic children do not have a right to this world, “defective” children that they are. Many are simply too caught up with their personal comforts, thus revealing their own selfish views of the world. Here are some of the ones that tested my restraint and self-control.

~0~

“My momma always said that with kid meltdowns, parents only had 2 real choices - a sock or duct tape.
Duct tape, it’s the universal pick of flight attendants, pilots, and child-manipulated parents everywhere.”

~0~

“Reasons like this are why we shouldn’t let autistic people on planes. Sure some lady & her brat kid got kicked off, but what about all the other people on that plane who were delayed because of that terrible mother & her mentally retarded child. We’ve got to remember the greater good, people!”

~0~

“a good smack and the promise of another would have no doubt resolved this.”

~0~

“Those among us who would like to behave as adults, and have control; both emotional and physical, of our children, should NOT be subject, to this kind of pluralistic editorial poppycock. I have rights and one of those rights is to travel with others who are capable of acting in a manner not associated with those who should perhaps be institutionalized.
“As a seasoned airline traveler who has seen every conceivable excuse from autism to drug addiction used to cover the truth about parents who don’t, won’t or cannot cope with their children…for whatever reason, I would like to say, PLEASE, allow me to travel and enjoy just as you wish to. The only difference between our philosophical positions is that you are in a small, sad minority, and no matter how much attention you cull, that will never change.”

~0~

“The mom should have told the brat, that if he does not calm down, the pilot was gonna throw him off the plane during flight. I’ve seen scare tactics used on kids and they work wonders. That kid stopped and wrapped his arms around his mother.”

~0~

“Enough is enough. I am sick and tired of parents of defective children who insist in them being treated as if they were normal. They are not normal. They cannot be mainstreamed. Get used to it. No amount of special treatment is going to make you feel good about your child. “

 ~0~

“I don’t think he was a safety risk. But I can’t stand screaming brats, autistic or not. And I don’t think that the rest of us ticket-paying customers should have to put up with this. If you have a problem child, STAY AT HOME. I don’t want you on my plane, on my bus, in my restaurant, at my movie, or in my shopping mall. GO HOME. STAY THERE. NEVER COME OUT for any reason. DIE THERE. GOOD RIDDANCE.”

~0~

“Do what I do & will continue to do (to other parents’ kids on airlines): smack their child & give the parents a look like they’re next. “

~0~

“TO STEPHANIE: “Some of you expressed understanding and empathy for the mum, but a lot of those folks, like me, have already had autism affect their lives on a permanent basis.”
“Exactly. And that’s why you are all so bitter. Your lives are permanently affected, so you take it out on the rest of us. It’s hard to feel sorry for someone like you when all you want to do is kick and scream and put a guilt trip on those who do not have children with autism. You underestimate everyone else’s level of compassion because your life isn’t what you had hoped it would be. Sorry, but we all have problems. Just because you have a child with autism, doesn’t mean that your life is any more special or important than ours. Get over yourself. I’m starting to think that autism is caused by a gene in self-absorbed, petty parents.”

~0~

I empathize with the mother and child concerned, as much as I also respect the airlines’ right to impose safety rules. Personally, I think that a little accommodation from the flight attendant (perhaps just even asking the mom how she can help is a start, instead of  handling the child herself) and also from the mother (she should have asked for a grace period of a few minutes and if the child was still uncooperative, then disembark from the plane without being asked to) would have gone a long way into resolving the issue. As human beings living on this same planet, as a community of people, courtesy and accommodation are visceral to living with each other in peace.

That being said, I think I have to speak my mind on the entitlements many feel we parents of autism use to “get our way” in the world. As a parent of a child with autism, I am very  aware of my son’s dependence on the kindness, tolerance, and compassion of others. As such, we have never used autism as an excuse to take advantage of others or refrain from obeying rules. Autism in our lives has not given us a sense of claim and privilege; on the contrary, we have learned to sublimate many of our own needs in favor of others’ comfort and wellbeing. We are always mindful and grateful for accommodations made for our son. And in the event that our son feels uncomfortable or overwhelmed or frightened, we are always first to remove him from these situations. The only real thing we ever ask for always is not to be judged.

Alphonse has missed much of life growing up, and this is partly because, I am ashamed to admit, we are always wary about disturbing others’ comfort and peace. And yet I ask now, if he remains locked from this world, and perhaps one day this too will happen to him- to be banned from church, to be rejected from school, to be kicked off a plane- what does this offer him but to entice him all the more to stay hidden and unbidden? Is your temporary convenience worth my son’s chances at a full and happy life?

Now, I am anxious about flying with my son. I know that there are many things that could have been done before, during, and after this sorry incident. And yes, I will keep all these in mind when I rethink our plans for Alphonse’s long-haul flight. Perhaps there are things we can control, and whatever they are, you who will share a flight with us in the future can be assured that we’ve worked on them to the full extent of our abilities as parents. Then again, perhaps, there are many more others that will surprise and befuddle us. Yet more than these, I am afraid of the hate, and wondering where this all comes from, I am most afraid of the answers. 

I ran into an old friend at a local grocery a few months back. We knew each other when our kids were very small. Her child was in a mainstreamed class in Alphonse’s school. We had the same hours in school then, even as our children were in vastly different circumstances. While Alphonse was a nonverbal toddler who required one-on-one teaching, her son, Q, was a bright, active, young boy with emerging, but very comprehensible, language.

Every morning, as the moms and nannies sat down for the long wait, she and I would seek our favorite corner of the lounge. Armed with our cross-stitching sets, books, and other paraphernalia to while away the long hours of waiting, we would often break the monotony of stitching with idle talk. In one of those long hours, she told me that their families — his and hers — do not know that Q was diagnosed with autism.

I’ve always been very upfront about Alphonse’s condition. The day he was diagnosed, I called everyone in our families and told them about it. My family (my parents and siblings) huddled around us as we all cried that very first day. My husband and I stayed on the phone for hours talking to my in-laws, trying our best to hold in the sobs that tore at our chests all day. And so, disclosure has never been a problem. There’ll be no cloak-and-dagger stuff with autism for us; truth to tell, my big mouth probably wouldn’t hold it in so well.

It was her husband’s idea, she said, to keep it in and hope that in a few years, no one will ever know he was “once autistic.” With his language blossoming rapidly in the year of speech therapy and his different preoccupations less persistent and less rigid, he was improving by leaps and bounds daily. But the secret weighed heavily with her, as relatives would often ask her about her son. Stumped for the truth, she would make up all kinds of excuses for Q’s current activities. She would create alibis for their time with the therapists, reinvent her descriptions of activities to include “normal”-sounding days, and keep her son out of their relatives’ scrutiny to hide the truth.

I did not wish to come between husband and wife, but I tried to convince her that hiding things will not make it any easier for their family. And despite many discussions of this theme till the day school ended, I was never able to change her mind. Before the year came to a close, she announced that Q had been accepted to an exclusive private school, where no one ever knew and would ever know that he is, or was, autistic. Then we said goodbye and I forgot all about her until the day she recognized me in the checkout lane of the grocery store.

I was very happy to run into her. We exchanged pleasantries and made small talk about our unfinished cross-stitched projects (she still has one from the late nineties, I have two). When I asked her about Q, however, a pained expression fleeted ever so quickly on her face. Then she laughed aloud, as if to cover up her embarrassment, and changed the topic. Later I saw her glance a few times over her shoulder to look in on a man and a much older couple. I pretended not to notice and we proceeded to talk about banal things while the checkout lane moved slowly. By the time she said goodbye, she whispered in my ear as she gave me a soft buss on the cheek. “They don’t know.”

Q must be 15 or 16 by now, and I wonder, in all those years, what they told him about himself. I really hope that he is as “indistinguishable” from his peers as they prayed he would be. It would be such a torment to wonder who and what and why he is the way he is without ever knowing the truth. To be “different” and not know why. To feel lost and not have any answers.

I used to think that people like my friend were rare in the world community of autism, the exceptions to the rule. I have met many fierce advocates of their children. And yes, we are a vociferous, vocal lot. And so, to run into more like her is deeply disturbing, yet at the same time, also heart-wrenching with grief. This takes our fight back to the days when the hush-hush mentality was the norm, when skeletons were hidden in the closet, and when prejudice ruled the day. Our only hope is that we can make our tooth-and nail fight for our children’s rights more public and more open as the days pass by.

But just recently, in another part of the world, the same question popped up: to tell or not to tell. In a Dear Abby syndicated column for the Arizona Republic on June 9), a family member posits this very same question.

~0~

Child’s autism kept secret
June 9, 2008 12:00 AM

Dear Abby:

 I have a beautiful 3-year-old niece I’ll call “Serena.” She is my brother “Simon’s” daughter. Serena is mildly autistic but has made amazing progress. We’re optimistic that she’ll be indistinguishable in a few years.

The problem is, Simon doesn’t want our parents to know about Serena’s condition. Simon thinks they would be judgmental toward him and would gossip about matters he would prefer be kept private. He might be right. But because he is keeping them in the dark, his relationship with them has deteriorated.

Simon has threatened that if I tell our parents about Serena’s autism, he’ll never speak to me again. Should I stay out of it or intervene? Is this kind of situation typical with families who have children with special needs?

Uncle With a Secret
 

Dear Uncle:

When a family member is diagnosed with a mental-health disorder, some families “circle the wagons” to hide it. While it’s regrettable, this is the path your brother has chosen. Not knowing your parents’ level of sophistication, I’m guessing he may be right about them and that he prefers to allow them into his daughter’s life only after her problem has become “indistinguishable in a few years.”

If you value your relationship with Simon, do not reveal his secret.

~0~

I have a mind to tell Dear Abby a thing or two, because in this day and age, I feel that “hiding in the shadows” is no longer an option. And while I may have some misgivings about labeling autism as purely a mental health disorder (which is deceptive and misleading, to say the least, although this term is still somewhat acceptable in light of its use in medical circles), I will have to pass on this issue for another time.

There is one central concern here, and this is the father’s acceptance of his child’s condition. That he feels he must hide is particularly revealing of his attitude towards his own child. That he takes on and uses his own biased judgment to predict others’ behavior towards this, that he decides for others what they feel or think or do without benefit of the doubt, is deplorable.

If I were Uncle With A Secret, I will encourage the father to come out in the open. Is he ashamed of the diagnosis? If so, then he must know, that autism is nothing shameful or disgraceful. Is it really just a case of wanting to protect his child from public judgment? Then, he must know, too, that in a world such as ours, we will never ever escape this, so why even bother to run from it? Face it squarely; celebrate your children’s strengths and never wallow in their weaknesses. And then, if this were a case of uncaring, unloving, petty, selfish, ignorant relatives, (of which I have had plenty of experience), then sever all ties with them and disavow them, but do not hide your child and his/her autism to please or appease anyone.

Autism should never be a secret, and in this case, if she were my niece, I will surely sit down with the grandparents and tell, regardless of the consequences of my relationship with my sibling. With love and support, children grow up believing in themselves. No child will ever thrive in the shadows; every one needs light and love to bloom and grow. And in the event that the grandparents are too ignorant to appreciate the blessing before them, then it is their loss, not mine, not the father’s, and certainly not the child’s.

Autism may have its heartbreaking moments, and this is true for all of us who live with it every single day of our lives. But it is also a landscape of learning, of exploration, and of wonder. It need not be a diagnosis of devastation. What it can be is what you and your family make of it. With love, acceptance, and faith, nothing is impossible.

by Erma Bombeck

When the good Lord was creating fathers He started with a tall frame.
And a female angel nearby said, “What kind of father is that? If You’re going to make children so close to the ground, why have You put fathers up so high? He won’t be able to shoot marbles without kneeling, tuck a child in bed without bending, or even kiss a child without a lot of stooping.”
And God smiled and said, “Yes, but if I make him child-size, whom would children have to look up to?”

And when God made a father’s hands, they were large and sinewy.
And the angel shook her head sadly and said, “Do You know what You’re doing?” Large hands are clumsy. They can’t manage diaper pins, small buttons, rubber bands on ponytails or even remove splinters caused by baseball bats.”
And God smiled and said, “I know, but they’re large enough to hold everything a small boy empties from his pockets at the end of a day … yet small enough to cup a child’s face in his hands.”

And then God molded long slim legs and broad shoulders.
And the angel nearby had a heart attack. “Boy, this is the end of the week, all right,” she clucked, ” Do You realize You just made a father without a lap?  How is he going to pull a child close to him without the kid falling between his legs?”
And God smiled and said, “A mother needs a lap. A father needs strong shoulders to pull a sled, balance a boy on a bicycle, or hold a sleepy head on the way home from the circus.”

God was in the middle of creating two of the largest feet anyone had ever seen when the angel could contain herself no longer. “That’s not fair. Do You honestly think those large boats are going to dig out of bed early in the morning when the baby cries? Or walk through a small birthday party without crushing at least three of the guests?”
And God smiled and said. “They’ll work. You’ll see. They’ll support a small child who wants to ‘ride a horse to Banbury Cross,’ or scare off mice at the summer cabin, or display shoes that will be a challenge to fill.”

God worked throughout the night, giving the father few words, but a firm, authoritative voice; eyes that saw everything, but remained calm and tolerant.
Finally, almost as an afterthought, He added tears. Then He turned to the Angel and said, “Now are you satisfied that he can love as much as a mother?”
The angel shuteth up.

~0~

(A and Baby Alphonse) 

The true measure of a man’s strength is his love for his children.

I’ve been playing catch-up with Alphonse’s demands for new PECS cards. These days, it seems as if everything is a breeze to him as he absorbs new things with amazing speed and comprehension. 

Object pictures are easy enough to do and over the years, I’ve amassed thousands of pictures of just about everything I could photograph. Action pictures are a lot tougher and sometimes, it takes a few tries before I can capture a single clear picture. I often use burst photography to get as many shots as possible, and even then, sometimes I have to re-shoot multiple times. (Fortunately, Alphonse is always a willing subject. ) After that, I preview the pictures on the computer, choose the clearest ones, and use Photoshop to clean them up. Here are some of the newer ones:

The other night, I explained to Alphonse that he needed new pictures again. I asked him if he was okay with posing; in response, he smiled widely and nodded vigorously. When I gave him instructions to “wear pants,” he did so with the utmost speed that I had to ask him to do it over and over again, just to be able to take enough shots. Ditto with the wearing of socks.

Apparently, Alphonse thought I would be taking facial shots too because at each click of the camera, he did this:

And this:

And he did these for all fifty shots!

The sun is shining brightly these days on this side of the street.

My Wii’s not broken! (*heaves a sigh of relief*)

Turns out that the power supply shorted out (must be the beastly heat) but the Wii itself is untouched. A is bringing me home a new power supply thingie tonight. I can’t wait to get back to my Guitar Hero nights and Wii Fit Days!

Kittymama’s rockin’ hot!

I get my daily newspapers at night, when A comes home from work. He brings home nine different newspapers each night, part of a journalistic exchange practice they’ve had for years. Nights, however, I have very many things going on all at the same time so I am always hard pressed to finish all nine of them. I usually get my paper time in the mornings before Alphonse is up, while I have my morning brew.

Monday was a holiday so reading the papers was out. A was home, which meant conversations over breakfast, and not my solitary pursuit of hot drink and the papers. This morning, as I was reading through Monday and Tuesday’s papers, a name jumped out from the byline- my friend C! She had written an article about autism (she didn’t tell me ) and it was on one of Monday’s papers. I was so giddily happy I texted her right away and told her I’m keeping a copy to have it signed.

Here is a scanned picture of her article. (I couldn’t find a link on the online archives anymore, even as this is a major broadsheet.) I’ve also blurred her name to protect her privacy.

Congratulations, my friend!

What made me even happier was the fact that Hello Kitty got special mention. Even better, C was referring to MY Hello Kitty autism awareness widget! Yay for friends!

Great job, C!

Just one of those days when nothing seems right. I burnt my laminator to a crisp while making PECS cards last night. A brought it to the repair center today and it set us back a tidy sum to have it repaired (I think I fried the heating element). Then, after 40 minutes of Wii Fit this morning, I forgot I left the game disc when I turned it off. When I turned it on again, I heard a popping sound and the Wii won’t start anymore. I have to wait for A to come home to look at it. I’m hoping it isn’t broken…

I’m complaining, I know… which is pretty bad considering the circumstances of the world today. Gas is at an alltime high. The cost of energy has significantly increased just in the last few months. Food is so expensive (imagine, a can of luncheon meat costs 1/7 of the minimum daily wage in the country!). People line up almost all day just to get a kilo or two of cheap rice (I see them everyday; I live rather near a government rice depot.) The list goes on…

And just when I am feeling low, along comes this beautiful reminder of hope. That while there are many things out there that can hurt us, He is always there to shield us and protect us from the hailstorms of life.

I’m hanging in here, my friends. Hope you all are too. 

For the sake of A’s privacy, I have decided not to post any pictures from my birthday vacation. Instead, I would like to share the many, wonderful ways A surprised me for this special event.

The night before we left, A brought home this cake for me and the kids. (See the dedication? How sweet!) I know Hello Kitty looks a little ragged in this cake, but I was so pleased that he remembered that I loved it just the same. Besides, Keroppi looked kinda cute!

A then asked me to pose for the camera, but I didn’t know he pulled a prank on me until I reviewed the pictures for uploading.

See how he switched the numbers from 41 to 14? Funny man, but he later made up for this by saying he has loved me since we were 14. Ahhh, what could be sweeter than that?

The cake would literally prove to be just the “icing” for my birthday celebrations as A had more surprises up his sleeve.  

At exactly midnight of May 31, just before he and I went to bed, he pulled out two more boxes from I-don’t-know-where-he-hid-them.

I was confused why he would give me another SD card until I opened the beautifully wrapped gift. Imagine my astonishment when I saw this-

“AAAAAAAHHHHHHHH!” I shrieked and jumped and hyperventilated for joy!

And when I settled down from the screaming and the jumping, he gave me yet another one…

A beautiful hello kitty-red Crumpler camera bag! How many more surprises can my heart take?

A and I then spent another hour fiddling with the camera and taking shots of each other. I fell asleep that night, wrapped in his arms, with the camera manual draped over my chest.

Over the next few days, as A and I enjoyed our brief vacation, he never failed to pull a surprise or two on me. They weren’t always  “over-the-moon” kind of surprises, though. Sometimes, it would be the simplest little thing, like a bar of chocolate or a bottle of Coke zero (”Coke is outrageously pricey in hotels,” he repeatedly reminded me. So one time, I ordered this very exotic tasting juice from room service, proud that I did not order Coke, and when the bill came, the juice was worth almost PhP600! I went back to Coke zero brought elsewhere, haha. But I digress…)

Most of the time, it was just the way he made his presence felt to me, like how, after 17 years of marriage, he still moves over to the side of traffic when we cross streets, or how he always gives me first dibs on the better pillow. Or how he starts and ends our days with “I love you.”

If I had honestly thought that by the third day, he had pulled enough surprises, I was in for a bigger shock. A knew that Hello Kitty would not be too far behind when my birthday comes every year, so he also whipped up this Kitty bag of goodies for me: three different Hello Kitty NDS lite styluses (reminder to self: plural of stylus is styli or styluses, but I like the latter better), a HK lunch bag, a metal water bottle, a pencil case (which can also double as PSP case) and stationery staples in pink and red.  

How can you not love a man who feels secure shopping for Hello Kittys? 

Just this week, a few days after we came back, A brought this home for me. His gift, he says, for my birthday. “But you’ve given me so much already,” I cried out. “For your wee feet,” he jested and smiled broadly as once again, the house was filled with screams and thumps of heavy-butt jumping.

I’ve always loved Elizabeth Barrett Browning’s poems and when I was young, I took to heart Sonnet 43 of her Sonnets from the Portuguese. I always prayed that when I meet the man of my heart, he would love me this same way.

“How do I love thee? Let me count the ways.

I love thee to the depth and breadth and height

My soul can reach, when feeling out of sight

For the ends of Being and ideal Grace.

I love thee to the level of everyday’s

Most quiet need, by sun and candlelight.

I love thee freely, as men strive for Right;

I love thee purely, as they turn from Praise.

I love thee with the passion put to use

In my old griefs, and with my childhood’s faith.

I love thee with a love I seemed to lose

With my lost saints,—I love thee with the breath,

Smiles, tears, of all my life!—and, if God choose,

I shall but love thee better after death.”

He already does. Am I not a lucky woman indeed? 

I started writing my own stories earlier than most children, in huge block letters at age three, at a time when Efren Montes and Vilma Santos were the rage on television. (I wrote a story about being his girlfriend, silly, precocious me). In grade school, I automatically drifted to the yearbook organization and the literary club, where I horrified my teacher with a very graphic story on decomposing, maggot-infested flesh (hey, I was eleven!) long before I learned all about blowflies. In high school, I was co-editor-in-chief of the school paper (the “co-“ part  because I didn’t have enough years behind me as member of the paper; in fact, the year I joined the paper was the year they made me co-editor-in chief). And in college, I applied for apprenticeships in local newspapers and got them, only to back out at the last minute because my parents did not favor a career in journalism. (Haha, I married one!)

When I went on an indefinite hiatus from medicine many years ago, it was without expectation of a definite date of return. Somehow, the farther I strayed, the easier it was not to look back. I kept myself busy by writing in journals, documenting our lives as we transitioned from couple to a family of four within three years of marriage. As I found the courage to listen to my own voice, I found the same courage to put that voice in paper. I ventured into professional writing  by happenstance; one particularly blessed day, I sat down to write about our family’s early years with autism and this got published in a local paper. Later, this same story would be included in one of Dr. Queena Lee-Chua’s series of Blessings books.

As my expertise in technology grew (ably guided by my then-five-year-old’s natural talents) I started writing for e-magazines too. Aside from the thrill of actually having a second career, it was the easiest way to make a little money for a stay-at-home mom like me. Days, I took care of the kids, did the household chores, and home-schooled my son with autism; nights, I bled my heart dry on those virtual pages, writing about our lives, and about music and movies and books. In one of those wonderful experiences, I even got to interview my personal hero- Col. Buzz Aldrin!

I suppose the leap from online writing to blogging is a natural evolutionary step, seamless, logical and smooth. Yet until late 2007, I hadn’t seriously considered taking the plunge. But things happen for a reason, and in my case, it was the events of a year before that, in late 2006, when our lives turned upside down again, that I felt like a lost a big part of myself. I stopped writing. Completely. I was emptied of everything I was then. It’s difficult to explain in a few words what happened, and I include this not to horrify you about my life, but to give you a sense of where I came from.

(more…)