Tag Archives: autism acceptance

The Right to Be

29 Sep

Six days ago, in what should have been just another “ordinary” work day for folks in Broadway, an incident in the matinee of Rodgers and Hammerstein’s “The King and I” made waves in social media for entirely different reasons. As the actor Kelvin Moon Loh tells it, a young child with autism got affected during the whipping scene and overcome with emotion, cried out loudly. It wasn’t the child’s reaction that bothered the actors on stage, Mr. Loh, particularly; it was the audience’s response to the child and his mother. I should simply post what Mr. Loh wrote about this incident. It’s far better than any way I can tell it.

I am angry and sad.

Just got off stage from today’s matinee and yes, something happened. Someone brought their autistic child to the theater.

That being said- this post won’t go the way you think it will.

You think I will admonish that mother for bringing a child who yelped during a quiet moment in the show. You think I will herald an audience that yelled at this mother for bringing their child to the theater. You think that I will have sympathy for my own company whose performances were disturbed from a foreign sound coming from in front of them. 

No.

Instead, I ask you- when did we as theater people, performers and audience members become so concerned with our own experience that we lose compassion for others? 

The theater to me has always been a way to examine/dissect the human experience and present it back to ourselves. Today, something very real was happening in the seats and, yes, it interrupted the fantasy that was supposed to be this matinee but ultimately theater is created to bring people together, not just for entertainment, but to enhance our lives when we walk out the door again.

It so happened that during “the whipping scene”, a rather intense moment in the second act, a child was heard yelping in the audience. It sounded like terror. Not more than one week earlier, during the same scene, a young girl in the front row- seemingly not autistic screamed and cried loudly and no one said anything then. How is this any different? 

His voice pierced the theater. The audience started to rally against the mother and her child to be removed. I heard murmurs of “why would you bring a child like that to the theater?”. This is wrong. Plainly wrong.

Because what you didn’t see was a mother desperately trying to do just that. But her son was not compliant. What they didn’t see was a mother desperately pleading with her child as he gripped the railing refusing- yelping more out of defiance. I could not look away. I wanted to scream and stop the show and say- “EVERYONE RELAX. SHE IS TRYING. CAN YOU NOT SEE THAT SHE IS TRYING???!!!!” I will gladly do the entire performance over again. Refund any ticket because-

For her to bring her child to the theater is brave. You don’t know what her life is like. Perhaps, they have great days where he can sit still and not make much noise because this is a rare occurrence. Perhaps she chooses to no longer live in fear, and refuses to compromise the experience of her child. Maybe she scouted the aisle seat for a very popular show in case such an episode would occur. She paid the same price to see the show as you did for her family. Her plan, as was yours, was to have an enjoyable afternoon at the theater and slowly her worst fears came true. 

I leave you with this- Shows that have special performances for autistic audiences should be commended for their efforts to make theater inclusive for all audiences. I believe like Joseph Papp that theater is created for all people. I stand by that and also for once, I am in a show that is completely FAMILY FRIENDLY. The King and I on Broadway is just that- FAMILY FRIENDLY- and that means entire families- with disabilities or not. Not only for special performances but for all performances. A night at the theater is special on any night you get to go. 

And no, I don’t care how much you spent on the tickets.

~Kelvin Moon Loh, September 23, 2015

As a parent of a severely disabled young man, I can speak first hand of how this lack of compassion has been the norm most of my son’s life. There have been many times when Alphonse has been shooed and shushed for his actions in public, when his loud shrieks and squeals have received angry stares, when his large, jerky movements have been met with impatience and hostility. Mr. Loh’s experience with the unsympathetic, almost boorish, behavior of the audience is not strange to us. Despite this, parents of children with disabilities- those with autism most of all- have to always walk a tightrope balancing their children’s needs with those of the larger public. It is a most difficult line to tread. I refer you back to an excerpt from one of my old posts: 

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. (from Flight Risk, 27 June 2008)

While we have always been quick to intervene, to calm, coax, and comfort him, we realize that we have done these less for his sake than for ours. Ashamed to be in the middle of curious, often unsympathetic, stares, embarrassed by the unwanted, unfriendly attention, we have often voluntarily given up his right to be seen, heard, and be part of this world.

Not anymore.

We owe Alphonse his chance to move in the same world we do- to explore, to grow, to learn by experience. Lack of compassion and empathy from a society that treats him and others like him as inconveniences notwithstanding, we continue to struggle to give him his space under the sun. We owe him that much.

Mr. Loh, thank you for standing up for our children. Thank you believing them worthy of your talent and time. Thank you for your respect and kindness. You have given us new dreams for our children. God bless you always. 

In parting, I leave you with pictures taken from last Sunday’s outing with Alphonse. You can see the happiness in his face as he steps out into the world.

 All set to go out into the world!

VM 01

My Boys

VM 02VM 03

We will always walk hand in hand.

VM 06

Should you bump into him one of these days, I pray that you find it in your heart to show kindness and compassion.

I promise you his smile will be all worth it.

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.”

Matthew 25:40

 

 

 

 

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Everyday Wonders

4 Jun

Over the last few months, an autism video has gone viral in my Facebook news feed. The video is from the ABC show 20/20 and features a young girl with autism named Carly Fleischmann. Although it is almost three years old, it is being picked up again by my friends and shared all over Facebook.

I’ve seen this video many times over the last couple of years and each time, it brought joyful tears into my eyes. It isn’t hard to fall in love with Carly. She is a beautiful, smart young lady and her life story is an inspiration to many, autistic or not.

Carly Fleischmann

Carly Fleischmann

For some reason, however, the messages I have received and have come with its sharing are not always innocuous and welcome. Most often, it comes with messages of expectations of a cure, often along the lines of “this could happen to Alphonse too.” Sometimes, there are questions on whether we’ve tried what worked for Carly, with subtle suggestions that maybe we “just didn’t do it right.” Pray tell, what exactly is the right way?

I wish it were that easy, friends. Really. I wish we could say that technology, for example, the iPad, is our gamechanger and that we lived happily ever after. Unfortunately, despite the introduction of technology into our lives, none of Carly’s feats and achievements have manifested themselves in our experiences. Maybe it just hasn’t happened yet, or maybe it never will. Sure, we are disappointed, but we don’t blame anyone. It’s just the way it is.

Perhaps we should stop calling Carly a miracle. By its very definition, a miracle is “an event not ascribable to human power or the laws of nature and consequently attributed to a supernatural, especially divine, agency.”* When we refer to Carly’s life as a miracle, we forget all her hard work and belittle the blood, sweat, and tears her parents and teachers have poured in to make all these happen. At the same time, it sends a message that we celebrate only those who have found a way out of the shackles of disability.

My Alphonse

My Alphonse

I think that as Alphonse’s family, we have reached a point in our lives where we have stopped waiting for a miracle and have simply learned to appreciate what we have today. We lived through years of autism hell and back and knowing how deep and frightening the dark hole we have climbed out of is, having Alphonse restored to our family is a gift in itself. That he wakes up happy and content most days is a blessing for us. That the good days outnumber the bad is already a prayer answered.

Be that as it may, appreciation and acceptance do not necessarily mean giving up on helping him. All these  mean little if we halt our efforts to help him reach the fullness of his being. Our dreams for Alphonse are the same as our dreams for our other son, his brother Alex.

To be happy.

To know that he is loved always.

To live a life of dignity in accordance to His Will.

What life with autism has taught us is to accept Alphonse as he is- imperfections and all- and show him that no matter what, he will always be accepted, nurtured, and loved.

I love Carly, and I thank God for all that He has done in her life. Carly is proof that we should never presume that intelligence is absent in the more affected individuals in the spectrum. It is a message that strikes a chord in my heart and I advocate the same for my son. But Alphonse, for all his limitations and disabilities, has had his share of wondrous things in life too.

When I think about it, I realize then that THIS the real miracle of Carly’s and Alphonse’s lives- the miracle of unconditional love.

~0~

*Source: Wikipedia

Shackling Prejudice, Unleashing Love

25 Jan

Years ago, when Alphonse was ten, he saw a parked car at the side of the road during one of his neighborhood walks. Because he loved to ride cars (he still does) and the car looked exactly like ours- same make, same model, same color- he tried to get into that car.

The doors were locked and Alphonse, oblivious to his nanny’s attempts to pull him away, kept jiggling the handle to open the car’s back passenger door. Within seconds, however, a man came out of the front driver’s side and berated my son and his nanny loudly. When the nanny explained that Alphonse has autism and that he did not understand that that car was not ours, the man shouted at them and said, “Dapat itinatali sa leeg ang mga ganyan!” (Loose translation: “People like him should be put on a leash.”)

I am reminded of this by the recent incident at a Whole Food store in Milwaukee. (Go ahead and watch the video, before proceeding. I’ll wait. Just promise to come back, okay?) It is disconcerting to know that in this day and age, when autism awareness is at the forefront of the fight for recognition and acceptance, this kind of prejudice still exists and occurs. The thought of putting a leash on a human being because of a disability sickens me. Why do we treat our fellow human beings this way? And what’s next? Do we gag them as well? Do we take away their right to exist?

Just this morning, I read an open letter to the management of Gymboree here in the Philippines. It was written by the parents of a five-year-old girl with autism. It hurts to read that eighteen years after we started our own journey with autism, things like these still happen. I thought that we had paved the road well enough with our own sacrifices and tears that children like Patricia will never have to be treated with less respect than is owed them as a human beings.

I haven’t given up hope that one day soon, and hopefully in my lifetime, we can begin to really extend the arms of welcome and understanding to people whose differences set them apart from us. In the meantime, we keep fighting the good fight for our children.

We are all they have. We are their weapons against prejudice and hate. And with our love, they will overcome.

~0~

Update: Gymboree Philippines has come out with a reply here. While I sincerely respect the company’s prerogative to set their own rules, it doesn’t seem to make sense to make age as the sole determining factor to decide who gets to use which facilities. How about size? Or skills? A few months within the child’s 60th month (if she has had her birthday and they insist on sticking to their 60-month rule) is not likely to make a difference in the big picture of autism.

I think it’s time that they change their rules to accommodate the needs of children with disabilities. In the end, I pray that Gymboree understands that children like Patricia don’t need freebies or token gifts- what they need are the opportunities to play and socialize and just be kids.

What they need is compassion.

Eyes of the World

13 Aug

My first article for HerWord.com since I left over a year ago. It feels good to be back home. 🙂

I was doing groceries early yesterday morning, trying to finish everything before the lunch crowd came to the mall. I remember I was in the shampoo and soap aisle, holding on to a nine-pack of pink Safeguard, when I started hearing screams, growls, and wailing. Everyone rushed to where the sounds were coming from. Everyone… but me.

I knew right away what it was. I’ve seen and heard it probably a million times before. The sounds of a meltdown—worse, a meltdown in public—were all too obvious. I took my time with the soap, trying to decide on the scent and color, trivial details, of course. I just didn’t want to be where everyone was and be part of the staring, the ogling, the whispering. I’ve seen those looks before. I knew them all.

When I got back to the cashier check-out counter, I knew I was right. There were people watching, holding their breaths, as if waiting for the next scene in a movie. Many just didn’t know what to do and stared dumbfounded. But a few had the look I hated most—the look of disdain in their faces. You can almost read their thoughts there and then. Of how autism had rudely interrupted their lives and they were annoyed at the momentary distraction. Of how the child was holding up the line, making a scene. And how the parents were pathetic fools who did not know how to control and discipline their child. It’s funny how easy it is to read aversion in the faces of men. Nothing can mask hate.

My husband gave me a lowdown on what had happened. He had been at the checkout line before me when I had run to get the soap. The boy, probably ten years old, had something taken away from him- food, my husband thought—and he was disconsolate at the loss. The boy had his mom and several other adults with him.

“Do they need our help?” I asked my husband.

“No,” he said. “His mom’s a pro. Look at how calm she is. She’s got it under control.”

I smiled and whispered again, “Now, if we can only get all these people to stop staring. I hate it when the same thing happens to us.”

“They just don’t know what autism is. They’re probably curious too, you know,” he said kindly.

I have to admire my husband’s compassion for those who cannot summon the same for children with autism. He’s always been an idealist. I used to be one too, but these days, I think of myself as a realist. A pragmatist. And as much as I continue to hope and pray for a future of acceptance for my son with autism, I have given up holding my breath for it to happen soon.

Once in your lifetime, you will come across a mom or a dad struggling with a child in full meltdown mode. If and when you do, please, please do not stare. If you would like to help, approach the parent and, in a gentle voice, ask if there is anything you can do to help. Many times, that parent will decline your offer of help. We autism parents are often like that. We don’t want to bother anyone else with our problems; we bend over backwards to make accommodations that others will not do for us. Offer it again anyway. If he or she accepts, then help with an open heart. If he or she says no, then stand back and move away, but leave a parting word of encouragement, if you can.

If you must look and keep a watchful eye, do so with this thought in mind: that what looks like a wild, undisciplined child may be a child in pain and his/her parents are doing all they can to help him/her. They need help and understanding, not judgment and scorn.

They say it takes a village to raise a child. I say it takes the whole world to raise a child with autism. Please stop staring and be part of the world.

Boring is Good

1 Sep

I had a busy last two weeks, which was good because I got out of the house more frequently than I have of late. I’ve been feeling cooped up here at home after a cycle of nonstop ring-a-ring-o’-posies with the flu. The down side was that I got too busy to sit down and jot what’s been happening with me and the family. Between the chores still piled up here at home (when, oh, when will I ever finish?), the kids (and for all their size, they are still kids- big, messy ones at that), and the unexpected changes in all our schedules, squeezing in some computer time was next to impossible. You know when something happens and you instantly think, “Wait till till I post this in my blog”? Well, that happened more times than I can count and I never could follow through.

The good news is we’re all okay now. Things are often BORING here at home and I mean it in the best possible sense. After two weeks of whirlwind activities, including some days off in Singapore, boring is an absolutely welcome development for this family- no unexpected changes, no unpredictable shifts, no crazy tilts in our already rollercoaster lives. I am ready for some down time, baby!

I do have stories to tell you of things I’ve seen and done and places I’ve visited in the last two weeks. One of them, I hope, will become part of Alphonse’s new life soon- an absolute gem of a find in the middle of this crowded city, an oasis for children like him. I’m still working out the details, but I hope that Alphonse will be able to get out of the house more often from then on. Wish us luck, please! We’re going to need it.

In the meantime, I will be uploading new pictures and resizing them for use in the next few days’ posts. Thanks for staying tuned, my friends. Will be back again tomorrow!

~0~

My happiness thought of the day:

Happiness is…

a three year-old nephew who screams in delight at the sight of his beloved, albeit disabled, cousin.

“Oh my God! That’s Kuya Alphonse! That’s Kuya Alphonse! I can’t believe it!”

Joseph has not seen Kuya* Alphonse in months since Alphonse got sick. It was my decision to keep him away, mindful that Alphonse may accidentally hurt him; he is so small and delicate still. But he never fails to ask about Alphonse in phone calls, and whenever someone asks him who he loves, he always says “Kuya Alphonse” without hesitation. Their happy reunion last Monday happened at my dad’s 70th birthday dinner.

Love is contagious, but so are fear and prejudice. I am grateful that my brothers and sisters love Alphonse so much that they passed on this same love for Alphonse to their children. Joseph knows Kuya Alphonse is different. Kuya sometimes tramples him underfoot, accidentally. Kuya sometimes refuses to share his bubbles. But Joseph understands, even at a young age, and adores Alphonse without fear, without revulsion, without judgment.

“It is only with the heart that one can see rightly; what is essential is invisible to the eye.”~Antoine de Saint-Exupéry

Wish we could just all love one another this way.

*(Big Brother)

A “Normal” Autism Day

23 Jun

Things are quiet here at home. When Alex is at school and my husband is at work, the pace of the household changes and almost slows down to a grinding halt. Alphonse stays in his “schoolhouse” for the better part of the day, working with his teachers, while I pop in every now and then to check on him. Some afternoons, he takes a nap in the house; most days, he simply runs and play till it’s time to go back to work again. Day in and day out, the rhythym of the household stays the same and while it can be comforting, sometimes, it can also be too quiet.

I don’t miss the drama of the old days, though, when whole days were spent quieting tantrums or getting over painfully aggressive episodes. I’m grateful that Alphonse has calmed down to a considerable measure, and that even in his angriest or saddest moments, he has gained control of his emotions and actions. Of course, there are moments when he still fills the entire house with his howls and cries.  When Alphonse cries, he cries with his whole heart and soul, pouring every bit of pain and sorrow into his waterfall of tears and his howls of anguish. 

Thankfully, there are more happy moments in this home now. We revel and take pleasure in each and every one of them. Alphonse’s joy at even the simplest things- a squirt bottle cap, hello kitty dolls, a kiss- reminds us that nothing should ever be taken for granted.  Not the smiles that he willingly shares with us each day. Not the sloppy kisses that wake us up each morning and send us off to dreamland every night. Alphonse has taught us that everything is perfect, even in his imperfect world.

This is our normal autism day.

Becoming

26 Feb

Published in Herword.com on February 25, 2009

It was another long weekend for the kids, Monday being a school holiday. With two of Alphonse’s nannies taking Sunday off, we decided to bring him out again for some city driving and a leisurely lunch out.

Going out as a family has never been easy for us. Getting ready for a trip or an outing has never been simply a matter of planning where and when and how much. This family needs a checklist, an autism-friendly itinerary, and a strict, no-nonsense schedule to even make it out the door.

In the past, we also needed multiple clothing changes in cases of toilet accidents or even just messy eating. We required an extra-large, heavy duty stroller all the time (till Alphonse was eight!) because the alternative was to carry Alphonse when he got tired. We brought GFCF-compliant food in Tupperwares for meals he needed, or if possible, we had food pre-ordered at restaurants before he arrived to cut on waiting time. Add to that list an assortment of toys and PECS cards and timers, and each was an issue that made going out, even for a short mall trip, extra difficult.

As Alphonse grew, we dealt with new issues even as the older ones were resolved. Strollers were replaced by wheelchair rentals, we became more lenient with his diet, and toilet accidents became few and far in-between. Finally, our humongous baby bag was replaced by a more adult-looking rucksack. But then Alphonse grew bigger and louder and faster and stronger, and each of these attributes which had made us proud and happy that he was growing well, I am ashamed to admit, also became a source of shame. When he shouted unintelligible words in public, I cringed as people would look and stare. When he jumped unexpectedly or grabbed at things, I steeled myself from the unending whispers that seemed to surround all of us. And when he laughed out too loud and too long for whatever reason, I cowered from people’s reactions that spoke volumes of how they saw my child—different, weird, and yes, defective. Sometimes, the impulse to bury my head in the sand was as overwhelming as an ostrich’s.

Then again, as my husband constantly reminds me, it’s not Alphonse’s fault. That’s just the way he is—loud, quirky, sudden—and the sooner I started to shed my layers of onion skin, the sooner I would enjoy growing with him. Reality check for Mama, that one is. For once I learned to worry more about Alphonse and the family and less about other people, I began to relax. And in truth, once that idea took hold in my head, it was so much easier to become less anxious and more positive about everything. Besides, I’m the only one Alphonse listens to (really!), which flatters the hell out of me any day.

So last Sunday, we headed to the mall. I made a quick stop at a store but this supposedly quick stop lasted longer as the store’s credit card payment facilities were down. My husband worried about Alphonse getting bored and impatient, but Alphonse seemed to take the waiting in stride. He sat down in front of the store and blew himself some bubbles. Alex was on hand to keep him from wandering even as my husband and I alternated between the checkout counter and the boys. By the time we paid for the items in cash, Alphonse actually hated to leave. He liked the store display so much.

Then it was off to lunch at Max’s. It was full that day and all they had was a table at the back, which meant walking through a whole restaurant full of tables with food. My son is a grabber; worse, he is a food grabber, so this seemed pretty much like a disaster-in-waiting. I gave Alphonse some reminders, repeated the whole thing again till I was sure he had heard me, and walked in with him hand in hand. We made it to our table just fine.

We ordered Max’s special fried chicken which Alphonse loves, and two kinds of spring rolls, and asparagus with tofu. Alphonse ate by himself, unassisted, and though he was kind of loud and messy and funny (he even ate all the garnish!), it was also nice watching him enjoy lunch outside. He loved the asparagus so much we asked for seconds but had to take that out as it came too late and at the end of the meal.

The only low point of the day was when Alphonse decided to eat our take-out right in the middle of the mall. We hid the brown bag inside our other packages but he persisted in going through all our shopping bags. There was a little commotion as my husband and Alex tried to keep Alphonse from ripping the bags, and as usual, people stopped to see what was going on. But didn’t I tell you earlier he listens to me? Once I started talking to him, he seemed to quiet down a little. And when I did show him what was inside the bags (I was confident that the little foodie bag was hidden well), he stopped. Just like that.

The ride home was uneventful, quiet, and really pleasant. Even the sudden change in plans—an unscheduled trip to the barber—was a breeze. Alphonse now has really short cropped hair which is perfect for this very early summer.

It’s little things like these that make our weekends worth remembering. It’s never the destination or the activities that define our life as a family but the little successes, once deemed impossible in the beginning of our journey with autism, that we’ve proudly achieved. And thinking of this, I think of a line I learned from Asian Civilizations class in college, from Laozi’s Tao Te Ching, “When I let go of what I am, I become what I might be.” Once I learned to let go of shame and fear, I became Alphonse’s mother.