Avon Foundation

Grief Dancer

Guilt creates painful ripples of memories which, in turn, flow into rivers of stories, allowing me to dance to the music of grief. My brother, Micho, was born premature, deaf, and mentally disabled due to complications related to my mother's pregnancy and her affliction with german measles. This was in 1969. In addition, Micho was also born with an irregular heart murmur and had to undergo a hernia operation early in life. This is dedicated to all those who know compassion because they have a disabled sibling in their lives.

A letter to the one who inspires me to be a grief dancer

Dear Micho,

You'll never understand what it's like to have a brother, but never know him. The summer before eighth grade, I was taking classes, part of the Higher Efficiency Program for girls. The boys' program was called Higher Achievement. And of course I had to be in a summer program because I had to be everything that you couldn't be. Ms. Thompson taught the writing class in which I kept a journal. It was a black and white marble notebook, which I had covered with cornflower blue wrapping paper with pink flowers. That summer's journal was devoted entirely to the anticipation of meeting you for the first time, my trip to the Philippines for the first time.

I would write, fantasize about what it would be like to finally meet my older brother. I can't remember when you left. All I know is that maybe we spent a year together. You must have left sometime before I turned two. All I have are pictures of you, Dad, Mom, and me in places I can't remember at all. The pictures look as if we might have played together. They look as if somehow we were close, as a brother and sister should be. But you would never be there to be my older brother, my manong, to watch out for me, to beat up any guys who weren't good enough for me, to give me advice because you had done everything first.

I remember hoping that when I met you for the first time, you would know that we were related, that I was your younger sister. That's all I ever wrote about that whole summer. For twelve years, I was always told that I had an older brother, deaf and retarded. We would receive letters from the Philippines with updated photos - your birthday, Christmas. We would even celebrate your birthday here in the States with an army load of pancit for much health and wealth, even though you were halfway across the world.

I remember Mom asking me to write you letters, notes on cards. I don't know when I realized that you couldn't write back. So what was the point of writing if you could never understand? Still, I hoped that whole summer, that we would experience some brotherly-sisterly bond. Somehow, you would just know that I was your younger sister, and we would perhaps share a secret language - something that only I could understand. Maybe I could be the key to what would unlock the broken spirit from within you.

Ms. Thompson returned my journal to me with all kinds of colorful comments in red, green, and purple ink. She wrote that she wanted to speak to me before the program ended. I wondered why, especially since she had written such nice comments in my journal. Things like, "Micho is lucky to have a sister like you . . . Your parents are so proud of you because you are their daughter." But I also remember Ms. Thompson writing other things like, "You shouldn't expect too much because even though Micho is very special (as in 'special kids'), he might not know you." I felt like she was trying to say, "I'm worried about you."

Mom, Dad, and I never talked about you in a way that would address the complexities of our family situation. The brother, who was born in Jersey City three years before me, but had to leave. The researchers and doctors could do nothing for you here. Autism was not even in their vocabulary. They told Mom and Dad that you wouldn't live long and that it would be best to place you in an institution. But they didn't want to do that. You were their first-born here in the States. They decided that what they could do was offer you a more comfortable life in the Philippines. Mom and Dad couldn't stand the thought of placing you in an institution.

It was the last day of the program. I walked into Ms. Thompson's classroom. It was a hot, humid summer afternoon. I could smell the chalkdust in the air. I could see the chalk particles floating through the sunlight. Ms. Thompson sat me down. I must be in trouble. I'd been wondering what I was in trouble for. She found some nurturing words to tell me that I shouldn't have such high expectations of you. I shouldn't put so much pressure on the hope that somehow we would bond. I don't think I really understood what she meant. Not have such high expectations? It's not as if I never knew you existed. I saw pictures of you. I wrote you. I made you cards and cut and paste papers for you. Mom and Dad made sure to always remind me that I had a brother.

Up until the morning we left for the Philippines, I would lie awake trying to figure out how I would greet you. How could I let you know that I was your sister? What could I do to prepare for our first meeting? The flight to the Philippines was so long, an entire day. When we were on the airplane, we didn't talk much about you. All I did was continue to write and hope. I don't really remember much about the trip from the airport up until actually seeing you. All of our cousins met Mom, Dad, and me at the airport. Then it was an eight-hour drive to the province where you were. Five of us were in the car, on our way to Narvacan, Ilocos Sur. Once we had been within 45 minutes of Dad's house passing through each town - Candon, Santiago, Santa Maria - I became more anxious. Dad recalling he and friends, stealing chickens from the backs of trucks. Dad recalling how much his homeland had changed and saying nothing about the son who probably had changed so much in twelve years. Everything looked so unfamiliar. Children begging in the city streets, selling sampaguita flowers strewn together. Everything smelled unfamiliar. That ongoing burnt smell of the countryside. I was so anxious about meeting you, about seeing you. I felt like throwing up. What was it going to be like?

I remember the car pulling up to the driveway. You came out of the house. Mom and Dad could barely unbuckle their seatbelts because they were so excited to see you. I sat in the car - frozen and scared. All this time, I had waited to see you. Mom and Dad hadn't seen you in twelve years. Their immigration papers had been messed up by governmental preferences. Mom and Dad rushed to hug you. I didn't. I got my bag, went into the house and started crying. I couldn't sit next to you. I was too frightened. You made weird noises, shuffled along and dragged your feet as if you were inhuman, even though I knew you weren't. You were my brother. I sat in the livingroom for what seemed to be a lifetime, sobbing. Mom wanted me to embrace you, to sit next to you. I didn't want to. I think I still don't want to. I hate feeling guilty, frightened of my own brother.

P.S. I've decided to pick up from where I left this letter last - two and a half years ago. It's now April 21, 2001, your 32nd birthday. In the last few months, I have intensively researched autism and individuals with disabilities. After 28 years of never having been assessed medically, you'll soon be starting a program to explore all the possibilities that doctors said you would never have. While Mom and Dad have been resigned to the decision they thought was best years ago, they too, are learning how to dance to the music of grief.

Much love from the sister you never knew.

Family secrets pass along so much regret and guilt. And now, I have shared my secret with all of you. Others' memories and stories have distorted my soul in a way that splits it in half, part of it here right now with all of you and part of it in the Philippines with Micho, who inspires me to be a grief dancer.

And what of the father who never had a chance to know his son?

for Michael's fatheras if autistic himself Papa cannot express his reserved grief lost the possibility of a son his thirty odd years of guilt his misplaced disappointment in himself in not dealing with his son's autism deaf himself in failing to understand the silent world in which his son screams grunts wails for Papa's attention

Near Death Broken spirits are divided between many places -- in the physical space of one's body, in the spiritual realm of one's soul, and face-to-face or heart-to-heart with God. I had attended an all-girls, private, Catholic high school for most of my life. I did everything that a good Catholic girl was supposed to do - go to church, get to Mass a half-hour before in preparation for Confirmation and greet church-goers, pray the rosary every night and fall asleep to the boredom of repetitive praying (it worked better than warm milk), and have high aspirations for becoming the first woman pope of the Christian world. Never did I imagine that I would meet God sometime near my thirteenth birthday, but I did.

It was during my first visit to the Philippines, to see Micho. My family and I had been traveling between the province and the city as if it were nothing to make an eight-hour trip every other day. We drove through what seemed to be ashen fields with carabao (oxen) roaming in the middle of them. I would get frustrated by how time passed so slowly in the Philippines compared to when I was home in Jersey City. It was hazy and humid, and I could only smell the burning countryside. We were on our way to spend a few days in Quezon City, where Auntie Sephine lived. Her house was beautiful with all the comforts of America - a heated shower, airconditioning, a piano, and an in-ground pool! I remember comparing her house in the Philippines to her familiar home in the States where I had spent many sleepovers in awe of her AVON-filled cabinets of perfumed sprays and solids, cakes of soap, and bottles of bubble bath. Auntie Sephine always gave me a little pin with solid perfume in it. The back of the pin opened to reveal a secret hiding place for the perfume. I would dab a little perfume on my finger and rub some behind my neck or my ear. There was a pin for every holiday - a friendly witch on her broom, a pale yellow Thanksgiving scarecrow, and a Christmas elf with a striped pink and white candy cane. I would wear her pins proudly on my OshKosh clothes.

More impressive than her pantryful of goodies for her favorite niece was her house in the Philippines which had an in-ground pool and was where I first was as close as I thought I could get to God. The pool's background had a color scheme of navy blue, light blue ocean waves, a turquoise sailboat, and seagulls flying through the peaceful mirage painted by Uncle Amor. It was a sunny afternoon of lazy fun just like when we used to visit with Auntie Sephine and Uncle Amor in the States. All of my cousins whom I had met for the first time were with me. My cousins from Connecticut were also visiting the Philippines at the same time.

I loved splashing in the water as much as any other pre-teen despite the fact that I was not the best swimmer, but could float long enough to sustain a game of Marco Polo. We had been swimming for a couple of hours already, snacking on pancit (noodles), white rice, ihawan na barbecue (grilled pork and chicken), and sweet mango when I noticed that Micho was also in the pool with us.

"Hmmm, " I wondered, "he can swim?"

Micho's ya-ya, his nanny, was squatting nearby at the poolside, supposedly watching Micho and laughing with the rest of us. Mom, Dad, the uncles and aunties were all up on the balcony playing mahjong. We heard roars of laughter every so often when one of them had won a round of escalera. The water was surprisingly warm as my cousins and I jumped on and off the diving board into the deep end and then relaxed in the shallow end. The hours of ongoing eating and swimming made me feel tired when I began to zone out a bit. I had that good exhausted feeling, a little famished from all the swimming, and my fingers and toes were white and pruny with the skin peeling off because I had spent so many hours in the pool, while my back began to peel because of sunburn. I noticed that there was a not so noticeable slope in the pool, the difference between the shallow and deep end. Micho seemed to be walking around in the pool on his tippy toes, pleasantly amused by the splashing around him and the sun in his eyes when suddenly, I noticed that he seemed to be drifting off into the deep end.

I asked myself, "Did he know how to swim?"

I certainly wasn't that skilled.

I watched each second grow with more concern, with more anxiety. I saw that Micho's ya-ya started to jump up and down and yell that Micho had slipped into the deep end. All of my cousins began to yell too. It becomes blurry after that. There was no lifeguard at the pool. Our parents were upstairs. What should I do? I immediately went into crisis mode and had to make a decision. No one seemed to be making any kind of decision at the moment. What was I supposed to do? I was no life saver, I didn't swim well. If I did nothing and Micho died, they would blame me. I would blame myself. Perhaps with God's grace and my failed 13-year-old sensibility, I reached my hand out to my older brother, whose supposedly disabled yet unbounded strength pulled me into the deep end of the pool. I, too, was tricked by that slippery slope that divided the shallow from the deep end and placed me between life and death.

Time passed before my eyes as I struggled to get out of Micho's gripping embrace. He had somehow managed to get me in what felt like a headlock, his arms around my neck as he was in panic mode too.

"Great, " I thought, "we'll both drown, and my parents will have lost both of their kids.

I could faintly hear the hysterical shouts of my family frantic with worry and disabled themselves by the moment's crisis. I was swallowing an entire ocean, my lungs filling up quickly as if they were dark caves flooded by an unexpected monsoon as typically happens during the rain season in the Philippines. I watched my whole life pass before my eyes. I knew I was close to meeting God as I saw my teenage body being flown back to the States in a black coffin. I knew I had met God when a peaceful calm had infused itself throughout my entire being, and instead of mere floating, I flew through the air with the grace of angels' wings and star dust. I knew I had met God when the scarlet red poppies in a sand meadow leapt at me as the rays of the sun tickled underneath my armpits, and I was fearless. I knew I had met God when I heard nothing but the mournful sound of a saxophone beneath a waterfall located amidst a shroud of vines and tropical treebark in a rainforest. Mine was the only coffin on the plane. I imagined that my brother had survived and I hadn't. I wasn't ready to meet God just yet.

How ironic that for many years, I have imagined that I survived and Micho hasn't. We both have survived. By God's grace, the Cabalda children did not drown. Mom had woken up from an afternoon nap when she had stepped poolside to take in the scenery and found herself jumping into the pool to relieve me from Micho's unknowing embrace. Dad had come down from the balcony, removed his watch and shorts and jumped into the pool to relieve Mom from Micho's unknowing strength. Mom was okay, and Dad was the lifesaver of the day. The rippling actions of poolwater, ocean water, or seawater no longer amused Micho. Neither did he like drinking water. And I had managed to surface my way up for air and out of the pool never to set foot in any water's deep end for the next two years.

Even after this near death experience, Mom never expressed her emotions about having left behind her first-born child in the Philippines and having to leave him behind upon every visit that it was time to return home to the States.

the caretaker for twenty-five years Shewas a nurse working in geriatrics with seniors and wrinkles old people who wreaked of unclean bathrooms who urinated and defecated on themselves unable to feed themselves.

for so many years Shewas their compassion. for so many years She cared for them Who had no one else.

for so many years She has cared for my father, brother and me never saying much, but endlessly patient.

She has always been there for me even after her sixteen-hour shifts . . . at my school's bake sale, at a mothers' auxiliary meeting, at my Christmas pageant.

Shemade my angels' wings out of goldrush gift wrapping paper and extra soft cotton balls.

She has always been there for her son . . . even across the oceans' distance.

this is why She works sixteen-hour shifts even at age 60 because She lives with her own painful secret - a mother longing to be with her son, who is unable to call out to her.

and i know Her secret because i am Her daughter. and as a Woman, i know. High School MemoriesI remember having to do all kinds of things in high school, having to complete those high school graduation requirements like community service. It was my senior year, and I was a member of the National Honor Society. My peers going to meet my brother, Micho. What I do remember about volunteering that day was that I wasn't sure what we would be doing with these disabled kids. Would they be in wheelchairs? Would they all be blind? Would they be able to speak? Would they be playing? Or would they just be sitting there, looking dumb with these stareless stares because there was no real person inside of them? Or would they be friendly enough that they would be able to play and appreciate our presence for a couple of hours?

I remember walking into the building, going up the stairs to where all of the disabled kids were. It was dimly lit and smelled like an institution, sanitary with a faint smell of ammonia - perhaps to blur the odor of feces of those who couldn't control their own bowel movements. I was led into a communal room, where there were kids being fed their meals - what I imagined to be dull mashed potatoes, unsweetened chocolate pudding, and watered down, powdered bug juice. There would be no way that I would dare taste that stuff. It was food fit enough for inhuman and unfeeling beings.

I hated hospitals, I hated any kind of any hospital-like institution. They reminded me of Dad being in and out of hospitals because of his heart trouble, a dauntless fear that he could die at any moment. They reminded me that my mother, a nurse, slaved over old people 16 hours a day. She worked in geriatrics, wiping up after senior citizens because they were unable to care for themselves, because their family members chose not to care for them. They reminded me of the brother I didn't know, who possibly resembled any of these disabled kids. Only he wasn't like these kids. He wasn't tied down to a wheelchair. He wasn't wearing a helmet to protect his head from any outrageous head-banging. He didn't stare blankly into the air unable to eat because he just had no idea what was going on. He wasn't like these kids who just moaned and grunted incessantly almost as if they were part of their own orchestra, making their own unfamiliar music, the sounds of individual spirits trying to break out of these physically restrained human boxes, trying to communicate somehow to each other, to the outside world, to anyone who would give them their respect as real, living human beings. Micho wasn't like any of these kids (from what I could remember about my first visit five years ago). Yet, each of these kids reminded me of him. Even though Micho was mobile. Even though he didn't look obviously disabled. Even though he could feed himself. Still, I was overcome with grief because I didn't know what he was like. I didn't know him. I just knew that he was my brother.

I don't think that I should've received credit for volunteering at St. Joseph's School for the Blind. I did nothing, except mourn some unspoken loss for hours. I couldn't bring myself to feed any of their students. I couldn't bring myself to toss a ball with any of the kids. I couldn't bring myself to sit at the table and color with any of them. And I didn't know why. What was my problem? After all, I had a brother who was disabled. I should be able to deal with this. Why was I scared of all these kids? Of being in this building? All I could do was stand in a corner and sob until my light blue, long-sleeved, button-down oxford shirt was drenched with mucus because I had no tissues to blow my nose. Some example I was setting as vice-president of the National Honor Society.

Later that year, we decided to volunteer at yet another disabled institution with the Hudson County Community Rehabilitation Center for the Developmentally Disabled. It was a crisp spring day in May. We met at the center on Montgomery Street. Each of us was paired with a disabled adult. There was an entire busload of them. I was paired with a young man, who had a red balloon tied to his wrist. I don't remember his name. He had reddish-brown hair and freckles. I think that I was afraid that he might smell bad and drool all over himself and me all day. We were introduced, and I would be his partner the entire day - on the bus ride, walking around the park, and on the return ride home. This time, I wasn't so overcome with grief.

I can't remember the exact moment. During the bus ride, I attempted to make conversation with my partner. I think that I was surprised that he could talk. Secretly, I hoped that this would somehow help me to understand what Micho was like, maybe even connect me to him. We ended up taking a 90-minute ride to some suburban town. Once we arrived, we were at a park with dozens of other disabled adults and their family and friends. Lots of balloons tied to others' wrists. I thought we were at some major balloon launch. My partner was quite endearing as he immediately grabbed my hand once we got off the bus and stepped onto the graveled parking lot. And off we were to the many activities of the day.

There was face painting. There was the beanbag toss into the wooden animal's mouth. The familiar carnival smells of cotton candy, popcorn, and candied apples on sticks wafted in the air. And maybe there was even something like the Special Olympics. The sun was shining brightly. My partner's hand was sweating in mine. All of a sudden, it occurred to me that I wasn't nervous at all. My anxiety had waned which was a good thing because I was really nervous about not being able to care for my partner, how to act right, what questions to ask.

As we walked through the fair, I asked my partner, "What would you like to do next? Do you have to go to the bathroom?"

I think I asked him if he had to go to the bathroom every five minutes. I dreaded having to actually help him go to the bathroom because all they had were port-o-potties. I was relieved to learn that he could go to the bathroom by himself. I did wonder if he had washed his hands after he peed.

I reassured him that he could tell me anything whenever he felt like it, to ask me any questions at any time. I couldn't help but look longingly at him. He was so innocent, so sweet. He could walk. He could talk. He could respond. He wasn't a 'my lil buddy' doll, who had reddish-brown hair and freckles too. He was a real person. I wondered what it would be like if Micho were at an event like this. What color balloon would he have liked to have had tied to his wrist?

Searching Autism "Autism is actually just one classification under the umbrella of Pervasive Developmental Disorders, which also includes Asperger's Syndrome, Rett's, childhood Disintegrative Disorder, and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). Unlike other diseases, which can be diagnosed by their physiological symptoms and medical testing, autism is determined by how closely the child's condition fits certain criteria. Since children can vary so widely within these criteria, many professionals have recently begun using the term Autism Spectrum Disorder (ASD) to emphasize the variance . . . " (excerpt from Facing Autism by Lynn Hamilton, 2000).

Micho was never around while I was growing up other than in a couple of pictures around the house. There's the one with him sitting on a huge rock by the river in the Philippines in his baby blue shorts and t-shirt. There's the other picture, our only family portrait (an informal one), most likely the first and last one we ever took as a family. I'm in my red and white checkered dress. Micho is in a hooded blue sweatjacket and printed brown pants. With her big smile, Mom is holding me obviously excited to be in front of the camera. Dad has a less than happy face as he holds Micho whose head is hung down as if he were too shy to look into the camera. Perhaps that is the most representative picture of our family dynamics because of the years of guilt, grief and denial that my parents and I would share privately. If I stare at that picture for too long which now sits in my parents' home, I easily become sad and distraught by our family secret.

Those two pictures serve as what few memories I have of my phantom brother. The memories I do have of Micho are limited to stories and letters as told by relatives whose letters arrived from the Philippines periodically. The letters usually recounted the same things: Micho celebrated his birthday. Many people attended. An entire food fest of pancit, lechon (roasted pig) and kalding (goat) had been prepared. Others' kids were the ones to play with Micho's new toys as he seemed to have no interest in his presents. Other memories are that of a thirteen-year-old who experienced the trauma of meeting her brother for the first time. New memories are preserved through formal medical and psychological assessments, the first ones to be attempted in twenty-eight years.

This is what Micho's teachers had to say about him at his school:

SOCIAL & EMOTIONAL DEVELOPMENT Michael showed no affectation towards examiner. He is non-verbal and spontaneous or functional communication was not observed. He at times shows unawareness of other people although can follow simple instructions especially with repeated cues and prompts. He inconsistently responds to name-calling, tapping on shoulder or at the back is at times needed to get his attention. He can remain seated through some tasks, attend and finish it, but in a limited manner. Sitting and attention span is fleeting, cues and prompts were needed for him to stay seated. It was observed that he enjoyed browsing through magazines. When upset or angry, he has temper tantrums of jumping, running back and forth and would throw things, but only in open spaces.

SENSORY MODALITIES Michael displayed stimulatory behavior of rocking back and forth, while shaking hands at the sides of his head. He would also make groaning and hoarse sounds. Inappropriate smelling of magazines was observed as well as sniffing and rubbing of crayon at the tip of his nose. Sniffing while frequent touching of nose was also observed. Vision is obviously affected due to asymmetry and lack of eye opening. It was also said (by caregiver) that he likes eating his meals with catsup. He likes to eat rice with his bare hands and seemed to prefer wearing slippers rather than shoes. It was also said that he has a fetish for tissue paper and rather use this instead of water for washing in his toilet needs. (Assessment by Josephine Nepomuceno, Oct. 2001)

I have never known much about autism. Every time I have described my brother, Micho, to friends, they have always followed with, "Is he autistic?" I would always respond, "No, he's never been diagnosed with autism, and his condition is complicated by the fact that he's deaf and retarded." But I have never known what that exactly meant. Except that "retarded" is now "developmentally disabled." It has only been in the last ten months that I have been researching autism, picking up all kinds of books on parents' stories and how they have coped with autism, resources on living with and researching autism. I never took the time to wonder why I was attracted to books especially for parents, until I realized that all this time, I, myself, have felt like I am the parent - searching for answers with regard to assisting Micho. That is the role my parents had placed me in long before I entered kindergarten, constantly reminding me that I could never forget that I have a brother, that I am responsible for him. Imagine that, having to be a parent since I was the age of five.

a legally binding contract (a) special needs mama papa sister independence

trust papa's side of the family as micho has for 30 years but i am no longer able to

neglected micho sat in a room alone unbathed flapping his fingers intertwined with a paper and pen

(i sit stifled)

(a) special needs unmet by papa's side of the family for 30 years trust prepares my brother and me financially when mama and papa have gone

how does my brother trust the sister he has never known?

Since my parents and I have been working through a lifetime of guilt and loss, I have learned to accept my parents for where they are at emotionally. I realize that they, too, are human and need to learn how to come to terms with the decision that they made 28 years ago. For the first time, I have been able to see that my mother is a woman, a mother, separate from my father, a man, each coping with a parent's pain of knowing that they have not been there for their son. Mom has never emoted to me, and I can never imagine with it is like for a mother to not know her son. In the last ten months, we have learned what it is like for a family to give voice to its secret of shame, guilt, and hope. We are able to discuss how I am, how Micho is, and the possibility of bringing him to the States. With specialists, Mom, Dad and I will have had a chance to assess his progress in the last year, and it will be a year in the summer, 2002. It still seems an unreal possibility that we could actually bring Micho to live here at home with us in the States. Still, in the midst of World War III, it seems like an unreasonable possibility to entertain . . . doesn't it?

When I remember all of the stories that I have heard growing up about Micho's idiosyncrasies, I now realize that he has always exhibited characteristics of autism. He has always enjoyed playing with complicated building sets like LEGOs and connecting spokes and wheels and such. He can spend two to three days constructing complicated creations, not getting any sleep. The diorama will be up for a day or two, and then he'll break it down and return all the parts to their respective boxes, and he's done. He turns on the lights at a certain time during dusk, and they must be shut off when everyone goes to bed. When there are visitors in the house, he must inspect every single piece of luggage, including their personal handbags, always hoping to find a piece of candy. Our relatives joke around that Micho would make a most accomplished airport inspector.

But perhaps the most intriguing habit of his is the fact that I have observed that he has to have the day's newspaper. It cannot be a day or a week old, it must be that day's paper. And he can tell if you're trying to trick him. I remember once during a visit to Narvacan, he was anxiously waiting for our cousin, an attorney, Manang Glo, to return from work because she was the one who would come home with the daily paper. It was interesting to watch Micho, sitting by the window, one leg up on the chair, the other hanging slightly off, his hand to his right cataract eye as if he were extending his finger to his eyelid so that he could focus correctly. And patiently he would await Manang Glo's homecoming so that he could add that day's paper to the pile of newspapers - in chronological order -- already sitting on the retro sofa turned bench that he slept on. I would always wonder what he saw in that day's newspaper. Could he make sense of the photos? What did he see in the text of the articles? Could he decode some secret message through the pictures and words? Or was it the fresh smell of the newsprint that he enjoyed so much? And was it the whiff of the newsprint that helped him to distinguish between that day's paper from that of a week ago? Micho has never liked sleeping on an actual bed and prefers sleeping on a minimal sofa-like piece of furniture, almost like a daybed, but not quite.

I had always wondered, "Did he not like sleeping on a bed, or was he just never taught to sleep on a bed?"

I had read in Lynn Hamilton's Facing Autism that autism and its therapies are "not too hard on a family, but untreated, or undertreated, autism is." That particular sentence resonated in my being - how Micho's undertreated autism had taken its toll on me personally. Upon reading the end of that paragraph, I realized, that is exactly what I had experienced when I last visited the Philippines in December, 2000. For the last six years, I had visited Micho and experienced the same anxiety each time knowing that he had not changed much, maybe put on or lost a few pounds, but also knowing that he was still and would always be my responsibility. In fact, during my last visit, while I was no expert, I noticed that Micho had regressed somewhat. He no longer ate with utensils as he had learned to years ago and instead chose to eat with his hands. I could not even tell if someone bathed him regularly. What I did know was that I could not return home to the States and do nothing about his quality of life, reminded once again that I would always be responsible for Micho. I had come to a point in my life when our family's failure to explore Micho's possibilities was much too hard on me.

It is October, 2001. Micho has been attending Learning Partners School Incorporated Care Services since July. It is his first time in school. He is their first residential client and as such, he has the benefits of receiving one-on-one attention from a team of specialists. We recently received a summary of Micho's first round of assessments at the Learning Partners School in San Juan, Metro Manila, Philippines. Much of the report records what our family has observed about Micho for years. But of course, now that his behaviors have finally been documented, Micho can be assessed in ways that all of the extra efforts are worthwhile because as a family, we honor Micho's life.

"Our senses are designed to help us decipher life experiences. Sight, smell, touch, hearing, and taste act as our guides. But what if our guides aren't accurante? Individuals with sensory disorders have inaccurate guides sending them faulty or exaggerated messages. Some people have hyposensitivity (underactive), which prevents htem from picking up cues from their sense, and some have hypersensitivity (overacdtive), which causes them to overreach to stimulation . . . Another aspect of sensory malfunction is the inability to understand and organize sensory information one it's received . . . Sensory integration is the neurological process that organizes sensation from one's own body and from the environment and makes it possible to use ht ebody effectively within the environment . . . Sensory integration is information processing . . . The brain must select, enhance, inhibit, compare, and associate the sensory information in a flexible, constantly changing patters; in other words, the brain must integrate it" (excerpt from Facing Autism by Lynn Hamilton, 2000).

As I continue to learn more about the particulars of autism, I am amazed at the many characteristics that also befit Micho. He possesses some of the most common indicators of sensory disorders that are part of his autistic make-up. He does not like to be touched; a hug means nothing to him. He has a high tolerance for pain; even with a toothache, candy calls out to him with a most alluring voice. He does not like tags on his clothing which explains why before he wears a new t-shirt, the tag must be cut off first. He has trouble wearing shoes; he has been wearing the same pair of tsinelas (slippers) for the last ten years. He has never liked having his teeth brushed, but at school, he has learned to include oral hygiene as part of his daily routine. He is a heavy walker; he does not pick up his feet at all when he walks and instead, shuffles about.

Similar to Micho's distinct walk with his carefully calculated and fast paced and awkward steps, I have always been cautious about revealing my emotions as they relate to Micho. I remember him holding part of a new toy close to his eyes for hours. He can be enamored with a pen wrapped up in a small piece of paper as if it were the most beautiful sunset off of the Narvacan beachfront where he lives. Or the way I imagine how Mom first laid eyes on her newborn son.

Mom recalls how as a young boy, Micho was always fascinated with the lights of the New York City skyline when they drove on the West Side highway looking across the Hudson River. Uncle Doming recounts how Micho turns lights on and off in their house. Uncle Doming also jokes around about Micho being cut out for the military because of his attention to detail and order, making sure that doors are always closed, that objects in the livingroom are always in their place. Micho presses his eyes with his fingers as if the pressure somehow helps him to see better, to see through people as if he had some sixth sense about people. He has a most impeccable taste for spicy foods and engages in a deep olfactory experience when his plate of food is set before him. It appears as if he not only says grace before his meal, but also calls upon our dead relatives who all knew him. They include Uncle Ben, Auntie Esperanza (Ancing), Uncle Vebeng, Auntie Sephine, all of our father's dead brothers and sisters, and Lola Cion, our father's mother.

Strange how so many of our relatives knew Micho, knew his ways of being, and yet, he avoids groups of people. Sometimes I wish I were a house lizard on the wall to witness how Micho would gesture to Auntie Ancing to accompany him to sell his newspapers so that he would receive some change to purchase candies in the market. Sometimes I wish I were that fixed statue of the Santo Nio that Micho ensures is in the same exact place on the side table in the livingroom because then, I would be a fixed part of his life. Sometimes I wish I were a pen that Micho related to for hours so that I could be the item that he is unafraid to touch and engage with. Nonetheless, I realize that I am the instrument through which I am able to tell my brother's story.

Sometimes I imagine that Micho, too, is a grief dancer.

Michael's dreams deep within my sleep dwell the truths memories pierce painfully into my being

deep inside my subconscious lie the realities feelings barely emote to my family's unresolved anonymity

without a soul am i?

deeply embedded emotions exhaust in my soundless words and in the States my family cannot awake me from my dreams