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When Life Happens: A Birthday Rolls Around Again

7 Nov

I owe you all an apology again for not having updated in a while. Each time something happens, I make a mental note to write about it, even going so far as to draft it in my mind, but for one reason or another, I never get around to sharing it with you. There’s been a flurry of changes in our home in the last three months. Even as the weather has changed from being hot and unbearable to being cold and rainy and then back to hot again, so has our home and our lives. It’s getting harder to just roll with the changes when they do come, I don’t know why. Maybe it’s just me. Maybe it’s just part of getting old.

The biggest news in our lives, and I mean that of the pleasant variety, is that Alphonse turned 22 last week. I’ve been dreaming of throwing him a party for his birthday for forever, but it simply has not happened and not for lack of trying. He still doesn’t do so well in crowds and noisy places so we figured another way to celebrate this special occasion. Instead of one big blowout, we decided to serve him his favorite dishes- one special dish a day- on the days leading to his birthday. We had pizzas one day, KFC fried chicken the next, garlic shrimps after, and Tita Lulu’s tokwa’t baboy (tofu and pork) after that. On his birthday, we went Asian with Chap Chae as his birthday noodles, Korean fried chicken with honey garlic sauce, and Szechuan style prawns. Not bad for a homemade birthday feast, right?

Aside from the special dinner we shared with a few of our extended family, we planned a picnic for him last Saturday. This one may strike you as strange, but it really isn’t, considering he hates crowdsalphonse-nov52016 and noise. So where to have a quiet picnic away from everyone else? At the cemetery, of course. by my dad’s graveside and on a weekend after All Souls’ Day. Perfect, right?

We brought mats and rechargeable fans, an extra tent, umbrellas, and four pizzas, three orders of buffalo wings, and lots of cold drinks. We sat around for two hours and made small talk while we ate, Alphonse in the middle of it all, relaxed and unfettered. When the temperature soared, we packed up our stuff and cleaned up, then headed home. Alphonse was content and happy, singing his wordless ditties all the way home.

Unfortunately, the planned Sunday trip to Tagaytay didn’t push through. We had a sudden home emergency that necessitated scrapping our plans at the last minute. Poor Alphonse! He was all dressed up and ready to go. I knew he was disappointed, judging by the way he puckered his lips into pouts the whole day. Later in the day, he took two short rides with his dad but even those didn’t seem to make up for the canceled plans. We have to reschedule soon because we made a promise to him; here’s hoping the next one pushes through.

I know I haven’t shared much about Alphonse in recent months. Truth is, as Alphonse gets older, it gets harder to keep writing about him. Physically, he is an adult. Already, he has almost four inches on me and can match me pound by pound, weight-wise. He is strong and strapping, with firm arms and sturdy legs. Cognitively, however, he functions somewhere between three and five years old; emotionally, he is at an even lower developmental level. He is impulsive, obsessive, and requires 24/7 attention. The mismatch between his size and mental age have obviously become wider with time. As such, behavior that may be considered amusing when done by a young child no longer seems cute or funny at his age.

As his family, we see him always through the lens of love. Even at the worst of times, when our lives are consumed by rigidity and explosive violence, our anger comes from our own helplessness and failings and not from a place of hate and indifference, not of him or his autism. Unfortunately, the same cannot be said of others who may now view him as threatening and frightening. This is the quandary I find myself in. To keep writing about Alphonse and all his challenges may mean creating fear and revulsion in those who do not know him or have no wish to get to know him. To stop altogether may mean sweeping his story, and many others like his, under the rug, at a time when we severely need to rectify the public’s misconceptions on autism.

Forgive me for the reluctance to share more stories about him in the future. I will not stop writing, that is a promise I made to myself many years ago when I started to blog, but perhaps it is time to reconsider the direction I may wish to take in this online journal. I’d like to think of it as a way to redefine and reshape our relationship as he grows older. And though you may see him still through snippets of our lives, he will occupy less and less space on this journal as I allow him the privacy demanded of his age.

Thank you to all those who have loved him, even from afar. And thank you for watching him grow up through these pages. It’s time for him to be 22.

Alphonse Gets His Passport (Renewed)

30 Aug

When Alphonse got his passport years ago, the application and renewal processes for minors and persons with disabilities were as limited as just showing up at the Department of Foreign Affairs (DFA) for a personal appearance. We filled out the forms by hand and submitted photographs and documentation. I don’t remember if they required proof of his disability then, but I remember bringing a letter from his developmental pediatrician, just in case. Sadly, Alphonse never got a chance to use his passport; aside from a planned long haul trip that went kaput, Alphonse’s resistance to change made it almost impossible to even try. His passport lapsed afterwards and, almost giving up on the dream of Disneyland for him, we let it stay expired.

A couple of months ago, buoyed by his unusual stretch of good behavior, we decided to have his passport renewed. To facilitate the process, we decided to schedule both his and his brother’s applications at the same time. I got appointments for both of them and prepared all the necessary documents.DFA 02 copy

In the midst of the preparations, however, Alphonse got sick. In our experience, any change always upsets his equilibrium; thus, I was tempted to forgo the appointment. But, having waited for it for close to two months, we did not relish the thought of postponing it for another 30 days. Fortunately, Alphonse was calm on the days leading to the date and given that he was on the road to recovery, we green-lighted the trip.

On the day of their appointments, we were at the DFA satellite branch in Megamall a full hour before opening. This guaranteed that we would be on time, with enough leeway to allow for eating or toilet accidents. It also allowed Alphonse to settle in and become more familiar with the area before the early morning crowd came in.

We were first in line when the doors opened at 10 in the morning. Because Alphonse required two persons to keep him company, the officers manning the appointments desk allowed me and my husband to accompany him. We got our numbers (first and second for the day for the  boys) after our appointment papers were verified. I explained each step to Alphonse, carefully assessing if he was anxious, afraid, or angry. There were quite a few people behind us already and we wanted to avoid a meltdown in public. Step One, done.

While waiting for the documents to be received, the four of us sat in the front row on seats reserved for PWDs and senior citizens. When our number flashed on the screen, we went to the designated window to hand in the papers. The DFA personnel were understanding of Alphonse’s inclination to run away when he feels threatened and did their best to talk to him in a low, friendly tone. My husband and I held Alphonse’s hands throughout the process and reminded him continuously that we were beside him all the way. Step Two went without a hitch; except for a swift tussle with the fingerprinting (in lieu of his signature), we managed to move to Step Three right away.

Step Three was a brief stop at the cashier for payment. Alphonse sat down quietly while we waited for his dad to finish paying for their passports. As soon as he was done, my husband joined us in the seating area by the Encoding section.

Step Four, Biometrics Encoding, took the longest. Were Alphonse more cooperative, we would have been in and out in half an hour flat. As it was, it took around 35 takes with the digital camera before the officer could get an acceptable shot, and even then, it looked like a mugshot. Alphonse was obviously anxious and scared by that time. His heart was beating very fast and he had a wild eyed look on him, like a deer in headlights. Moreover, taking his fingerprints via the electronic reader turned out to be a battle of wills. He was stronger than all three of us combined and no amount of hand holding, finger twisting, forcing, and cajoling could set those fingers on the scanner. In the end, we had to let him shake off his fear himself. I had him do a series of touching exercises with his fingers, showing him each time that nothing would cause an “ouchie.” I got him to touch the scanner successfully a few times before we did the actual biometric reading. By the time he was done, he and I were both drenched in sweat.

A♥ stayed behind to pay for courier delivery of the passports while Alex and I led Alphonse out of the offices. Alphonse rushed down the flight of stairs and suddenly threw up, spewing the contents of his breakfast on the floor. We wiped him down, but he kept trying to grab a wet tissue off of us.  When I asked him why he needed a wet wipe, he lifted his right foot, grunted “Uh,” and showed us the vomit still sticking to his shoes. We laughed like crazy then, and he laughed along, the relief visible in his face.

A couple of weeks later, when his passport was delivered, I showed it to Alphonse. He giggled when he saw his picture. I asked him if he was ready to go in a plane and he nodded.

“To Disneyland, Alphonse?” I asked again. He started screeching in glee.

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There are many things that are difficult for Alphonse, and in turn, for this family. Travel is one of them. Still, we continue to dream that one day, Alphonse will be able to see more of the world. It’ll be a big step, but if we can’t dream big, who can?

Here are some tips we learned from our experience with Alphonse. I hope this helps your loved ones, especially those with autism, with their passport application:

  1. Set an early morning weekday appointment, the first morning schedule, if possible, so that there are fewer people. If members of the family will be applying or renewing as well, choose the family appointment option. Appointments can be done here: https://www.passport.gov.ph/
  2. Come early. Bring his/her PWD ID and inform the guard and appointments desk that you have a PWD with you. There is an option to use the Courtesy Lane, particularly for individuals with disabilities who find waiting intolerable.
  3. Prepare all documents and appointment papers beforehand. Make xerox copies of everything, even the IDs.
  4. Practice the steps for passport application and renewal. Prepare a social story if needed.
  5. If the individual with disability cannot sign his/her name, his/her fingerprints will be needed for data collection. Practice using an inkpad or make a toy replica of the scanner for practice.
  6. Bring all necessary support/materals during the appointment. PECS cards or assistive communications devices are absolutely necessary. Toys and snacks may help in the wait.
  7. Dress your loved one in comfortable clothing.
  8. Choose the satellite branch nearest you to reduce the stress of travel and traffic. Some branches have less foot traffic than others. Still, appointments ease the difficulty of application. Walk-ins are sometimes accommodated but I would not suggest this option for PWDs unless absolutely necessary.

In parting, we would like to thank the Department of Foreign Affairs officers and personnel who welcomed Alphonse with kindness and respect. We would have gotten all their names had Alphonse not needed our complete attention.  Maraming, maraming salamat po. You all made the process so much easier with your tolerance and understanding.

 

There’s No Easy Way to Say Goodbye

11 Jul

We were going to do some grocery shopping Saturday afternoon, not a lot, just the usual eggs, bread, and milk for the coming week. Because it had been a long, tiring ten days since we got home from our vacation, A♥ said “Maybe we can take in a quick movie too? We won’t be long.” I didn’t even think about it. I said yes right away.

Alex was home to keep an eye on his brother and we had temporary care lined up to help Alphonse. I couldn’t resist the lure of a movie to distract us from the daily grind. And it was a real date, even if there were groceries involved.

I hurriedly changed into a new outfit I had been saving for the next date- a pair of tattered jean capris and a loose white cotton blouse I had purchased in Fuji on sale. I took out my hair rollers and gave my hair a quick run through with my fingers. I dabbed some sunblock, laid over a primer, and worked through my makeup as fast as I could. When A♥ saw that I was ready, he grabbed his keys, flashed me an OK! sign, and gave final instructions to Alex for his brother’s care. And then we were off. Almost.

When we reached the bottom of the stairs, we ran into Alphonse on his way up. He was humming a wordless ditty but upon seeing us, he stopped. He looked at us- first at me, then at A♥- and took in our clothes and the makeup on my face and then, just like that, it seemed as if a universe of happiness was sucked out of his whole being. His back bent into a stoop, his shoulders slumped, his hands stopped flapping. As he became still and small, his eyes turned vacant and glassy. The corners of his mouth drooped into a sad little pout. He didn’t make a sound. If I could describe what betrayal looked like, I’d have said that Alphonse, at that very moment, personified all its hurt and sorrow.

Despite my promises to return with presents for him, he just stood there, staring at us, that same sad, wretched look on his face. If he had grabbed at us, perhaps, I would have been firmer and maybe we would have made it out the door. But that afternoon, when it was all too possible he was still wounded and hurting, he needed, nay, wanted, us to be there for him. How could we leave him?

A♥ took command and got Alphonse dressed and ready to go in no time at all. The three of us headed to the grocery store and ran our errands, the movie and date forgotten casualties of parenthood. We passed by McDonald’s for a treat before we went home. Alphonse was quiet, but he was smiling again.

Later that night, as Alphonse hovered around us again, I asked him a few questions.

Mama: Alphonse, are you sad when Mama and Papa leave you at home?

Alphonse nodded.

Mama: How do you feel? Ouchy? In here? (I point at his heart.)

Alphonse showed me this.

Alphonse crying copy

Once in a while, this nonverbal, profoundly autistic young man opens up to the world and it is a rare, amazing insight into his heart and mind.

Don’t be afraid, son. Mama and Papa will stay as long as we can.

Sundays with Alphonse

22 Feb

blog 01Since A♥ started working farther from home last year, weekends have been used for one of two things: running errands or sleeping. Our date and movie nights have suffered seriously because of his schedule, but we’ve adjusted by turning our errands into dates, and our sleeping days into lazy dates! Winking Face Emoji (Twitter Version)

Of course, with Alphonse around, we’ve been hard pressed to find time for these “dates” so we’ve taken to bringing him with us when we can. It’s not a mean feat preparing him for a few hours of the outside world; aside from the mental and emotional preparation, there are the physical ones we have to overcome first. Packing a bag of essentials is a must; his carry on usually has a  change of clothes and underwear, his PECS cards, bubbles solutions-a bigger bottle for refills and a small one with a wand, a small towel, wet and dry tissues, snacks, and a a reusable adult wee bag for those times he cannot wait. (The iPad is optional since he tends to use cards more but it does come in handy for social stories.) The car is also prepped with extra golf umbrellas (to form a makeshift cover for him when the calls of nature come suddenly and unannounced) and cushions and pillows to prevent headbanging.

Yesterday was one of our errand days but Alphonse also needed to get out of the house. He has been acting very angsty since A♥ went on an overnight work trip last week. We figured a little time outside with us would help calm him down.

We left the house later than we planned. The sun was already high and hot above us when we left but Alphonse was in good spirits. Aside from picking up our week’s rations of vegetables from the supermarket, we had planned to drop by to visit Dad at the cemetery and A♥’s Mom at the nearby church ossuarium. The last time we went to Loyola, Alphonse couldn’t wait to get back in the car (it must have been the heat), so we were happy to see him stay for a while. We were even able to say our prayers before he signaled for us to go.

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Alphonse brought flowers for Lola, Great GrandLola and Tito Lolo. ♥

And then came his favorite part of the day- grocery shopping! I wish I took a video of how he helped us choose and bag vegetables. He was quite the helper yesterday!

Alphonse 22116C

Alphonse stopped by the CDO hotdog stand and asked for one. Mom had to hold it lest he swallowed the whole thing in one go. He wasn’t too happy about it though.

We made a few more stops for pancake and rice cake mixes before we headed to the check-out lanes. When Alphonse got the cart near the counter, he suddenly broke out in loud, uncontrollable laughter and shrieks. And then he grabbed four Kit Kat bars and hugged them close to his chest! Ah, this young man is a little boy at heart (and mind) still! You can see his smiles below; they’re truly the most heartfelt of smiles.

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The sweetest smiles are reserved for his Papa… and Kit Kat. ♥

Having less people around Alphonse has allowed him, by necessity, to gain a measure of independence. We’ve gone a long way from when Alphonse could only look at the world from the inside, peering through windows and watching life pass him by. These days, he is happy to mingle and take part- however limited the interactions may be- in the world around him. And we are happy to hold his hand and make this journey possible for him.

I wish all days were like Sundays.

 

 

Present and Accounted For

25 Jan

I’ve been trying to think of a word to describe how Alphonse has been in the last month or so, but no matter how I rack my brain to do it, nothing seems to fit. Aware? Conscious? Sensitive? I find myself at a loss for words. Somehow, these don’t seem apt at all. Then too, if I use them, do they betray a prejudice against individuals with autism by attributing them with the lack or absence of these traits? Alphonse is certainly aware, conscious, and sensitive of us and his environment; if at all, he is painfully burdened by an over-awareness of everything that goes around him. Perhaps the word or words I am looking for are more related to a perceived emotional distance, an aloofness that disconnects him with other’s intentions and motivations.

And yet, today, even as I write this, Alphonse seems more here, more present with us these days. I can’t explain it at all. I don’t know why or how, he just is.

He tries to reach out more often, making himself seen and heard. Would you believe that we’ve been able to have conversations with him- funny ones at that? Despite his inability to communicate through spoken language, he has managed to make his responses understood. There is also a remarkable degree of restraint in him these days, something we have not seen in a long while.

Consider this.  When his nanny absconded early last year, despite a promise to return (with an advance on her salary, a paid-for return airplane ticket, and a borrowed cellular phone), Alphonse didn’t break out in tantrums right away. We had given him a social story on his iPad to read before and during his nanny’s absence. I made sure to include a calendar marked with her vacation days. Three days after she was due to return and with news that she had eloped, Alphonse finally had that full-scale meltdown. He pulled our hair, threw all our borrowed dining chairs, and even tried, on several occasions, to bite us. It took about a week before he calmed down.

Knowing his reactions to loss, we resolved to make the next transitions smoother. With our previous successes with social stories fresh on my mind, I worked on poster pictures for Alphonse, giving him copies on his iPad and printing out some to post on the walls. I even kept copies on my mobile phone so would always have them on hand and ready for viewing. We showed the pictures to him every day, and after about two weeks, he began to really understand what they were for.

No pulling hairWhen another nanny informed us of her plans to “retire” soon after the others, we redoubled our efforts at showing him these pictures. Three weeks before his nanny left, I gave him another social story, a goodbye book to prepare him for her departure. We took pictures of his nanny waving goodbye. We told him she would not be coming back, but that she would keep in touch through Facebook and phone calls. On the night he first read the book, Alphonse shrieked and yelled in heartbreak. With tears streaming down his cheeks, he proceeded to throw what he could lay his hands on BUT he did not pull our hair. When I ran toward him to comfort him, he sobbed even louder, burying his head in my shoulder. I noticed his hands were clenched in tight fists. He had clenched them so tightly that his hands were bright red and his nails had dug marks into his palms. That was when we began to realize the extent of his self-restraint (no pulling hair, Alphonse!) and his new-found understanding of what he may and may not do.

That he’s been more attuned to us continues to be a source of our amazement and joy. We ask him questions and surprisingly, he gives us answers. The easiest questions are those he can reply to with a nod or a shake of his head. Of late, he has also started verbalizing more, often accompanying his nod with a “Ya” and the shake of his head with a “Na/No.” Even more amazing, he would say “Ayaw ayaw ayaw” (I don’t want to, I don’t want to, I don’t want to) when pressed into doing something against his will (like bathing with cold water, heehee). When presented with choices, it’s comforting to know he knows what he wants and can often choose to his satisfaction. Little things to many, but for one who has never had his own voice, they certainly mean a lot.

Just this New Year, on the way to lunch with the rest of the family, we asked him what he wanted to have for lunch.

Do you want chicken? Na.

Do you want pizza? Ya.

Shakey’s? Ya.

Pizza Hut? Ya.

Yellow cab? Weh? (He’s never had Yellow Cab Pizza, I forgot.)

Poor thing. We ended up eating at Max’s Fried Chicken because Shakey’s was closed and we didn’t want to take another stab at finding parking. It took a while before his gloomy face brightened and only after we bribed him with a whole Max’s fried chicken. Still, it makes us happy to know he has opinions and choices; we only need to find a way to help him bring them out in the open.

I can only imagine what the future has in store for us and for Alphonse. But if this is any indication of what we can expect, then we shall see Alphonse evolve and continue to grow as he ages. All children grow, and children with autism are no exception. But Time, it seems, is what they need the most of.

For now, it is enough he is here, present and accounted for, struggling against the mighty wall of his disabilities. We shall continue to arm him with the picks and axes he needs to tear down these walls. Time, I pray, will do the rest.

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Alphonse at 21

3 Nov

I can’t believe you’re 21 today, son. I can’t believe we made it this far.

Happy birthday!

Many times, over the years, I often wondered if we would ever get past those years of heartbreak and violence. I wondered if we would live to see this day, if we would ever reach this point when we could look back with relief and, yes, gratitude, that we made it through those long stretches of heartache. And mind you, son, we have lived through much.

We’ve had times when our whole world was in shambles, when we lived in sorrow and darkness. We wept for days and clung to each other in helpless surrender. We forged through your terrors and rage. We loved you, always, even when anger blinded you and fear made you reject and push us away.

Now, here we are. Twenty one years into a life we never knew could change us so much. A life with you. A life with autism. A life shaped by adversity, tempered by grace, made whole by love.

Thank you, Alphonse, for all that you have brought and continue to bring to our lives. Thank you for teaching us to love unconditionally, without hope of return or reciprocation.

Thank you for showing us the limitless spools of our patience. We have learned to wait and find joy in the waiting.

Thank you for teaching us to endure, to be steadfast and unwavering in our fortitude and faith.

Thank you for teaching us to bend, to kneel, and to submit wholeheartedly and with all humility to the One who gave you to us.

Thank you for bringing out the best in us. Who knew that Mama, your scaredy-cat mother, had strength and courage? That Papa, firstborn and strong-willed, came with an inexhaustible supply of steady, constant patience?  Or that your Kuya Alex, your big, burly full-bearded brother, was capable of so much spontaneous outpouring of gentle love? Your presence in our lives allowed us to find these wellsprings of kindness in our hearts.

Thank you for showing us the pleasures of little things, the wonder of tiny miracles, and the sheer delight that comes from just being alive.

And thank you, for knowing and finally accepting our love, and for loving each one of us back with your kisses, hugs, and many more quiet acts of tenderness and love. Yours is love in action, our son.

Happy 21st birthday, Alphonse. Ours has been a journey of unbelievable, unimaginable adventures and it has only just begun.

We love you always.

Alphonse as a newborn, two weeks early, two days late
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Loved since birth

alphonse 03

and loved always, even when autism came (diagnosis at 18 months old).

when autism came 01

Cute and cuddly, (and wearing Mama’s baptismal dress), falling in love with this little baby was always easy.

Alphonse as girl

But as he grew older, he developed differently. While typical little boys play, he would prostrate himself on cold floors for hours at a time.

when autism came 02

Our baby went to school earlier than most, his days revolving around therapy centers and special education. 

Alphonse toddler

At his school, he was the youngest child to be diagnosed then.

Alphonse cutie

Alphonse was different. His fascinations were different. He loved twirling the plastic rotor blades of his Fisher Price helicopter.

Alphonse teddy 01

But there were times we could almost pretend we were “typical” and “normal,” and have our pictures taken like regular people… 

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Even as his interests grew differently from his peers. He has always loved water and could spend hours playing with the hose.

Alphonse and the Hose

And pieces of string and twirly slinkies could keep him preoccupied for hours.

Alphonse teddy 02

With autism came periods of stress too, of self-injurious behavior, which caused us grief and endless worry.

Self injury AlphonsePicture copy

But his gorgeous smiles always made the hard times worth it.

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Bestowed with the gift of beauty,

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yet often fierce and funny,

alphonse

this boy spreads joy with just a smile.

alphonse 03

And as he grows older,

Alphonse

and bigger,

My Alphonse

wiser and stronger,

Alphonse at work2

may his smiles remain with us

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to give us light when darkness comes

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and to bind us in love and kindness always.

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Happy birthday, Alphonse!

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We love you so. 

 

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