Becoming

Autism Acceptance poster

By: Pinky Cuaycong (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 shoo-in for 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.

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Pinky Cuaycong is Kittymama, full time mom of two boys (a 16-year-old high school junior and a 14-year-old with profound autism), part-time writer, and blogger. In Okasaneko Chronicles, she writes about her life’s deepest passions: her husband of 18 years, her teenage sons, autism advocacy, and Hello Kitty.