Okasaneko
(http://blog.hellokitty.com/okasaneko)
A Tubby Tabby, Three Konekos, and a Life with Hello Kitty and Autism

Raison d’être

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!)

Writing in long handWhen 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) Col. Buzz Aldrin on the moonI 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.


October 2007:
“I was living a writer’s dream late last year. I had regular assignments. I wrote from the home and went out a few times a month to do research and the occasional interviews. Balancing this dream with my real-life responsibilities as a fulltime mother and primary caregiver to my sons was a total breeze, it seemed. Alexander, my eldest, was wrapping up the last few months of the seventh grade. Alphonse, my autistic son, was thriving beautifully under strict routines and schedule at home. We were so hopeful that Alphonse’s developmental gains were becoming permanent that we had even begun decreasing the doses of his medications. Then, tragedy struck.

“With a little more than a week’s notice, our ABA provider removed our therapist, essentially depriving Alphonse of his most important foothold to normal life. Unable to provide us with immediate replacement, they could do little but check in on us occasionally. There was no one else left to continue the teaching program except me.

“It was a task I willingly shouldered. In truth, it was just a minor sacrifice in the big scheme of things, but Alphonse had severe difficulties adjusting to the new situation. Still, I did not feel too bothered at first. Alphonse had his nannies and me and we strove to make him feel like nothing was amiss. But each day, he would wait for his teacher to come at nine in the morning. He would bathe and dress up, sit outside in our plastic lawn furniture, a bottle of bubbles in hand, and wait. And wait. And wait. I could not coax him to come inside the house. He simply wanted to wait.

Scared“As the days wore on and still no teacher in sight, he would be, in turns, disappointed and distraught. Some days, he would cry a bit and flail against our attempts to calm him down. Other times, he would wail pitifully and ask to be shown the empty doorway over and over again, as if to make sure that there was really no one there. I decided to move his sessions outside because he would not go inside the house. He still wanted to wait.

“Barely three weeks later, his nannies left this time. Now there was only me. Truly inconsolable in grief and bewildered by the sudden changes in his previously orderly life, Alphonse finally snapped.

“How many blows can the human head withstand before it finally gives in? How long can a human body sustain itself against beatings? I found out the answers the hard way.

“For days and weeks and months thereafter, Alphonse beat me with his fists. In the head. In the face. In the abdomen. He would strike me repeatedly till all his anger was spent. I parried his punches with great effort but I was no match for his relentless fury. Each time his punches connected, it fueled his anger more. Once, he punched me so hard in the face that my eyeglasses broke into pieces of glass and twisted metal. Another time, he viciously struck me in the neck that I threw up all over myself. My life was a flurry of blows I could not stop.

“My husband and my eldest son tried to shield me from Alphonse’s anger. When A came home from work, he took charge of Alphonse himself and gave me time to cry and breathe normally again. He skipped his lunch breaks so he could come home and check up on Alphonse and myself. And Alex, my dear stoic son, would hold on to his brother for dear life when Alphonse would make attempts to hit me again. Sometimes, in an effort to get away from their restraints, Alphonse would momentarily shift his focus on them and hit them too until he could get at me.

“By January, I sported so many new bruises and cuts that it was difficult to see where the new ones were. I had to cut my hair real short this time; where Alphonse would pull at my hair to hold me down while he beat me, there were bald spots that were shamefully and painfully plain for everyone to see. My arms, from the shoulder down to my fingers, were always tingling and painful; my neck was always stiff. The blows to my head and neck had caused considerable trauma to these areas.   

“I started binging. I could not eat a single bite during the day; I had little appetite. I vomited from the stress and anxiety of each waking moment. But when Alphonse would fall asleep from exhaustion, I forced myself to eat without thought or reason. I stuffed myself full while I cried myself hoarse. I gained 25 pounds in two months. I was miserable and depressed. Those days, I simply waited for the last blow to end it all.

“I asked for help but no one seemed to know what to do. Professionals who handled Alphonse’s case gave us potent medications but some of them made him zombie-like, stuck in one pose for long, uncomfortable minutes, drooling, and staring vacantly into space. As much as it hurt us to see him like that, we had no option but to choose the blank, drug-induced state over his raging violence. We thought we had lost Alphonse completely.

“Alphonse’s developmental pediatrician and his psychiatrist removed the new ones and put us back on his old medication. They increased the dosage in increments until his aggression was once again blunted. It took weeks to get the dosage right but as important as it was to keep him under medication, it was more important to put normalcy in our lives and get him back on track.

“I looked for new therapists to help me out with him. One teacher we tried lasted all of three days and quit after getting a few blows on the head. Another lasted a week but left too when he received a resounding slap. We interviewed potential applicants but they were all unable to commit themselves to dealing with an aggressive twelve year-old. One day, however, the clouds over our heads parted long enough for a sliver of sunshine to come through. Teachers R and P came into our lives when we needed help the most; we finally found people who were willing to brave the odds and help us in the road to recovery.  

“By April, Alphonse was no longer hitting me constantly and I could go for days without wearing my protective helmet and neck brace. In May, Alphonse started smiling again. My sweet, loving child was finally back, awakened from a long terrible slumber.

“My wounds ran deeper this time. For many months, I could not sleep as I relived moments of terror. I had nightmares long after Alphonse started to get well. There were also times I found myself flinching unconsciously when he came near me. One particularly shameful episode was the day he tried to hug me and I was so scared that I almost jumped out of my skin. Alphonse was startled and confused that he cried. I silently berated myself then; how could a mother fear her own child?