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

Archive for the 'Autism' Category

On The Sunny Side Of The Street

Friday, June 13th, 2008

I’ve been playing catch-up with Alphonse’s demands for new PECS cards. These days, it seems as if everything is a breeze to him as he absorbs new things with amazing speed and comprehension. 

Object pictures are easy enough to do and over the years, I’ve amassed thousands of pictures of just about everything I could photograph. Action pictures are a lot tougher and sometimes, it takes a few tries before I can capture a single clear picture. I often use burst photography to get as many shots as possible, and even then, sometimes I have to re-shoot multiple times. (Fortunately, Alphonse is always a willing subject. :-) ) After that, I preview the pictures on the computer, choose the clearest ones, and use Photoshop to clean them up. Here are some of the newer ones:

 PECS wear pantsPECS wear socks

The other night, I explained to Alphonse that he needed new pictures again. I asked him if he was okay with posing; in response, he smiled widely and nodded vigorously. When I gave him instructions to “wear pants,” he did so with the utmost speed that I had to ask him to do it over and over again, just to be able to take enough shots. Ditto with the wearing of socks.

Apparently, Alphonse thought I would be taking facial shots too because at each click of the camera, he did this:

More Cheers!

And this:

And pose!

And he did these for all fifty shots!

The sun is shining brightly these days on this side of the street. :-)

Raison d’être

Friday, June 6th, 2008

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.

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No Sanctuary for Autism

Friday, May 30th, 2008

From HerWord.com, published May 29, 2008:

“People were bringing little children to Jesus to have him touch them, but the disciples rebuked them. When Jesus saw this, he was indignant. He said to them, ‘Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it.’ And he took the children in his arms, put his hands on them and blessed them” (Mark 10:13-16; Matthew 19:13-15; Luke 18:15-17)

It’s a half past two in the morning. I should be sleeping but my underpants are in a knot again (it feels like a wedgie, only bulkier). I was doing some late-night surfing when I chanced upon this news article about autism. “Minnesota Priest Bans Boy with Autism from Church,” the headlines scream, and I am downright furious.

Below is the entire news article from Blogger News Network.

“A Roman Catholic priest, Rev. Daniel Walz, has banned a 13-year-old boy with autism from his church in Minnesota, on the grounds of disruptive behaviour. According to news reports, the priest was worried that the boy’s behavior was “disruptive and dangerous,” according to court documents. The Catholic priest had filed a restraining order preventing the boy with autism from entering the Church of St.Joseph in Bertha, Minnesota.

“Carol Race, the mother of the autistic boy named Adam, found out about the restraining order when she tried to attend mass at the Church of St. Joseph, where she usually went on Sundays. Todd County Sheriff Pete Mikkelson appeared in her driveway to warn her she would be taken into police custody if she and her son entered St. Joseph.

“Race of Bertha, Minnesota in the United States, refuted the claims made by the priest and stated that Adam may be noisy at times, but they usually sit in the back of the church and try to stay quiet. She also said that the restraining order amounts to outright discrimination.

“Autism is a neuro-developmental disorder affecting over 60 million people around the World. According to the CDC, one in 150 children in the United States is on the autism spectrum.

“The United Nations General Assembly in New York recently launched the first-ever World Autism Awareness Day on 2nd April. UN Secretary-General Ban Ki-moon released a message on World Autism Awareness Day - he paid tribute to the courage of children with autism and their families, who strive every day “to confront the disability with a powerful combination of determination, creativity and hope.”

“In his message marking the World Autism Awareness Day, Mr. Ban Ki-moon stressed the need to build enabling environments for children with disabilities so they can prosper as future members of their communities, citizens of their countries and as fully-fledged members of the global community.

“Campaigners are calling on Pope Benedict XVI to make a statement on autism and to provide instructions to the church on how to reach out to children and adults with disabilities - including autism and Asperger’s syndrome.”

Reading this brought me back to one of Mr. Brown’s posts about his daughter Faith  written in January of this year. He asked then, “When will Faith find her place in this society? When will she find her place in God’s House? How do we plan to accept kids like her for who they are, in our families, in our communities, and in our places of worship?” Sadly, like him, I too am at a loss.

I have a son Adam’s age, and like Adam, my Alphonse is severely autistic. He is noisy and loud; he shouts and screeches, even in public. He is hyperactive. He likes to jump and pace and gallop. While he may be a lot shorter than Adam’s six feet, Alphonse certainly can pack a wallop.

The first time we brought him to church to worship, we were met with curious stares and loud mutterings of complaints. The choir was singing an upbeat praise song and Alphonse seemed to enjoy it, judging by his frantic jumping and the laughter and shouts that came from him. There was a continuous stream of hushing around us, and one old woman, a church lay worker, finally decided to do something about it. She went up to our faces to say “Shouting is not allowed in church.” Then she shifted her gaze to my son and said rather loudly, “Be quiet, young man.” Alphonse simply laughed aloud some more.

I explained to everyone who would care to listen that my son is autistic. I asked for understanding and tolerance, and, if my memory serves me right, perhaps even apologized for him being the way he is. Some asked to be enlightened some more; others simply sulked in quiet irritation. A few we had to stare down till they looked away. (My older son Alex has perfected what he calls “The Evil Eye, ” which has as its components the makings of a bushy unibrow coupled with a big, buggy, insane look.) The old woman disappeared in the midst of my explanation. In the end, while others still gawked and stared awkwardly, they all stopped complaining.

In truth, such experiences are hardly new to us. They are more the rule than the exception, as these days, we still struggle to secure a place in society for our son. You might almost say we have gotten a little immune against these experiences of bigotry and intolerance. But to experience it in places of worship deeply hurts us as parents. If our children cannot find acceptance and tolerance in church, where would they ever find these? If they are not welcome in their Father’s house, where else would they be?

Not wishing to cast aspersions on the motives of others, I looked at the reasons for Father Walz to deny a person his right to worship. Allegedly, Adam had not only been disruptive, but violent as well.

But you know what? My son can be that way, too. And given what we know of our son, given what we have learned from our years of living with and loving him, I still feel that he should NEVER ever be deprived of his chance to worship, never mind that they say he doesn’t even understand. He doesn’t need to; his Father does.

There are other ways to address this issue, ways that are more humane, even more Christlike. Father Walz, above all, should know. Christ’s Church has never turned anyone away, certainly not the “least” of its people, the socially marginalized, the sick, the disabled. That we have reached a point where even the most “accepting” of all sanctuaries would no longer provide refuge for our children gives me little hope for the future of my son and all children like him.

And this leads me to even more questions. When we allow the banning of autistic persons from church, you have to ask soon, where does it end? Do we start banning them from restaurants, too? From malls? From streets? From life?

O, Lord, help us.

~0~

I wrote this last week but got only published this week. In the interim, there have been many things written about this. Today, when the issue has become less volatile and I have had ample time to think and mull over this, my stand remains the same. The Church should always be a sanctuary for the weakest of our people and at no point should it have to choose which ones are let in and which ones are not. I would think that in a society whose strongest virtues are liberty and equality, there should be no room for fear, ignorance, and prejudice.

Apron Strings

Monday, May 26th, 2008

Sleeping like a babyI woke up very early this morning with a feverish child cuddled by my side. His breathing was raspy and shallow. Alphonse was hot, yet he was shivering from the cold of the airconditioning. I turned off the cold air and covered him with a light cotton blanket. After a while, his breathing became more regular and peaceful. I let him sleep.

As I read a book quietly by his side, I thought about how much this child, nay, young man, still needs me and his father, even at thirteen. Where neurotypical children of his age are raring for independence, Alphonse still clings to us like a little baby. He needs us for many things, most of all, his security. Many times, he would wake up in the middle of the night just to check if we were there beside him. When I work late at nights, he would fetch me from whatever it is I am doing and beckon me to go to bed. And when A and I are late coming back from a movie or dinner date, he would be sitting in the garage, waiting for us to come home to him.

Yes, of late, he has been more independent, more willing to try out things for himself. He feeds, bathes, and dresses himself, with very little help from us at all. Sure, when he eats he can be very messy as he has not mastered the art of the fork (we use a large tray to catch his spills), and yes, sometimes, he puts his underwear on backwards. Yet each time he does these things for himself, he looks to us for approval, for a sign that we appreciate what he has accomplished for himself.

His big brother, on the other hand, is the opposite. At fifteen, he relishes his independence and guards it zealously. He is quick to barrel through the world with all its ugliness and harshness, knocking down obstacles like one swats flies. These days, he struggles against our apron strings and pulls them taut many times, as if to test our limits as parents. He is no longer a child, and becoming more and more of his own man.

Once upon a time, A and I imagined a time when we would be empty nesters, when the children were grown and responsible for themselves. Perhaps we could travel the world then. Perhaps we could retire in some obscure but picturesque village in his father’s native province. And then, looking at a sleeping Alphonse in the middle of our family bed, A and I quickly dismiss the thought. We would never be empty nesters, and while there comes a twinge of sadness with this thought, there is happiness in it too. Alphonse will never know how it is to be alone and unloved.

When Real Life Gets In The Way

Monday, April 21st, 2008

Running on emptyIt’s been ten days since my last visit, and for an empty page, it seems an eternity. They say that life can get in the way of blogging, and for many of us multitasking parents, this is more often the rule than the exception. These days, I feel like I’m running on empty. I feel overwhelmed. I am tired.

Since the start of the month, I’ve been struggling with a nasty cough and fever that’s made the rounds of the whole household. It couldn’t have happened at a worst time.  We’re in the middle of Nanny Transitions, amd things are iffy enough as it is. And just when we were making good progress, we hit another brick wall and everything came tumbling down again.

Mind you, we certainly can’t be accused of lack of planning. As parents of a child with autism, we have long learned that preparation was our best weapon in our arsenal of parenting tricks. As early as January, when  the old nannies made their intention to leave (one of them is leaving for good, the other is coming back after a brief vacation), we had set a timetable to start transitioning new nannies. We started looking as early as then, and by March, we had two new hires vetted by an employment agency. We got them a month and a half early to allow Alphonse the time to get to know them better, and vice-versa. Also, we thought that to make the transition more seamless, it was wiser to have the nannies’ stays overlap so when the first set leaves, Alphonse won’t feel their absence too much.

We got a pair of nannies with movie-star sounding names, Ruffa and Gretchen. (I kid you not!) Alphonse fell head over heels in love with Gretchen the day she set foot into our home, but completely ignored Ruffa. As is our practice with people new in our household, we kept them included in our home activities but initially limited their active participation. It was Alphonse who noticed their addition to our family. He saw both of them sitting in on his afternoon class, observing. Suddenly, he went up to Gretchen, smiled broadly, and gave her a big hug. Success!

Gretchen was with us two weeks when one morning, she passed out for no apparent reason. Alphonse and I were still sleeping when we were awakened by loud knocks on the bedroom door. Alarmed, I stood up to find Gretchen unconscious on the living room floor, the other nannies fanning her furiously and wailing in fright. I proceeded to check her vital signs, while I assessed the circumstances surrounding this episode. Despite our attempts to awaken her, she would not respond to any stimuli. We brought her to the Emergency Room at once.

The doctors were puzzled over the ambivalent signs they elicited from her unconscious state. They drew blood, put her on a cardiac machine, did a complete physical and neurological work-up- and found nothing. Two and a half hours later, she suddenly sneezed, opened her eyes, and looked at us smiling. Upon the recommendation of the neurologist, we had her admitted for observation and more tests. These, too, all turned out to be normal.  

During her confinement, I found out that she had had two previous episodes of unexplained loss of consciousness before, both of them already diagnosed to be of psychiatric origin. I was furious at the employment agency for their failure to inform us of her condition; they already knew she had a problem and yet continued to recommend her to people. The employment and medical records history submitted to us did not indicate any health problems, and naively, we took them at their word. I had to let her go after that. Her two weeks stay turned out to be an expensive lesson for us.

I stayed with her in the hospital during her confinement, and soon after, I started feeling ill myself. Then Alphonse got sick, then A, and then a week later, the other nannies succumbed as well.
 
Taking care of four sick people (five, including myself) was no joke, and many mornings, I had to literally crawl out of bed to get anything done. Thankfully, my fever disappeared after a prolonged round of antibiotics, but the cough simply won’t go. I still hack and hawk and wheeze and snork all day.

The old nannies left on schedule and we’ve been hard pressed to find new ones. Alphonse is depressed and is not eating. Since his nanny left, it’s been very hard to put a smile on his face. I reassure him as much as I can that I will always be here for him, but he looks for Nanny Michelle everywhere- in the bathrooms, in the laundry room, in the basement, even in trash cans. And not finding her, he sits and stares forlornly. Other times, he weeps inconsolably and clings to me as if lost. How can a mother ease her son’s heartbreak? 

And so, there is little time for myself these days. My world revolves around a son who seems lost in the world again. I am constantly by his side, waiting, anticipating, expecting. I have to keep running even when I’m almost empty myself. I’m afraid that if I stop even just to take a breath, I’ll get stalled.  

Affirmation: Making A Difference

Thursday, April 10th, 2008

You make a difference

Too often, we measure our children’s progress by the leaps and bounds he or she makes. We  like to measure things in big chunks of miles and kilometers, in grades surpassed in one leap, in medals accrued on Recognition Day. And yet, when we see our child’s milestones creep at a snail’s pace or when progress seems disappointingly slow, we often ask ourselves, “What are we doing wrong?”

True, it is not altogether wrong to look back at our mistakes in order to improve ourselves and our children. But to solely concentrate on what needs to be fixed belittles our abilities as parents and puts to short shrift our children’s efforts. Not only do we overlook the importance of the distance, no matter how short, that our child has covered in his journey of life, we also shortchange ourselves by believing that what we put into those “inches” did not count.

Our children’s achievements, no matter how seemingly insignificant in the scheme of life, are proudly their own, but these would not have been possible if their parents are not the wind beneath their wings. So let us allow ourselves a celebration, a pat on the back, even a hug, for each step our children make. After all, when they all started out their journeys in life, they all walked hand in hand with us.

We made a difference then, you and I. We still do.   

Affirmation of Parenting

Wednesday, April 9th, 2008

You are a good parent

These days, the pressure to “perform” as a parent of any child can be overwhelming. Imagine this same pressure heaped upon parents of autistic individuals and magnified much more. Parenting has never been as hard and as complicated as we know today.

Throughout the unsettled questions and controversies raging in the autism community, it’s hard not to be swept away by the arguments on either side. Some say “do this,” others say “don’t.” It’s enough for any sane parent to start questioning his/her abilities to mother or father their own child.

I don’t understand the divide in this same community we all exist in. To insist on one prescribed way for a condition that has never been known to come from one single cause is irrational. No one thing has ever been found to cause autism, as there has never been one single prescibed regimen to “cure” it. So go ahead, do the diet if you want. Give supplements or not. Pick TEACCH or ABA. Try RDI or Floortime. Whatever it is you choose, do it for the right reason- the desire to help your child gain his foothold in the world, and not because you want him to fit in in a ”normal” and “autism-free” world. 

I take inspiration from very special mothers of very special individuals. Go read them at Susan Senator and Mother of Shrek. You’ll find humor and warmth, love and acceptance, openness and tolerance, in the pages of their weblogs. When I need to remind myself of the kind of parent I want to be, I simply hop on to these pages and envision myself as the embodiment of all their good virtues.

I am a good parent. You are a good parent. Don’t let others tell you otherwise.  

Affirmation of Expertise

Tuesday, April 8th, 2008

You are an expert

It’s easy enough to be carried away by the differing opinions of experts. Coming from a vantage point of the medical profession, I learned early enough to accord respect and deference to learned individuals of magnified importance, education, and status. And this becomes many a parent’s dilemma: is their voice worthy enough to be heard? What is the value of their opinion and knowledge when stacked against those of expert medical and education experts?

I’ve realized however, that when it comes to my child, I am the expert, not the doctors, not his teachers, and certainly not those who pass judgment based on an hour or two of observation. I use their knowledge as a compass for navigating unknown terrain, but in the end, I, not them, walk the path with my child.

You and I are experts too.

Affirmation

Tuesday, April 8th, 2008

You Are Strong

For the rest of Autism Awareness Month, I will post daily a note of affirmation to remind parents everywhere, be they parents of differently-abled individuals or not, of the blessings they hold in their hands. The chance to shape another person’s destiny is a gift not to be taken lightly.

I found these notes of encouragement at Love Notes For Special Parents by Terri Mauro. These are beautiful reminders of how we as parents can choose to make a difference in our children’s lives, if we only believe.

See With New Eyes

Wednesday, April 2nd, 2008

This is Alphonse. All of 13 years old, he is a handsome young man who makes girls swoon with his movie star features.

Alphonse

He’s an active fellow. He likes to walk a lot, sometimes deep in thought, as if pondering on the problems of the world. Other times, he can’t contain himself and he gallops, arms waving wildly, smiling broadly for the world to see.

He likes to play with bubbles. (So do I!) He’s rather lazy when it comes to writing. He hates to color, though he does like a lot of splashy colors in his clothes. His favorite color is pink. (Mine too!) He digs Hello Kitty, making him my best friend in our home.

While he has a soft spot for Kitty, he is all boy, too. He likes rough horseplay with his brother. When big brother wrestles with him, he squeals like a little girl. Big brother teases him endlessly until Alphonse gets even by sticking a wet finger in Kuya’s ear.  

He likes smells of all sorts. Ehrm, even the nasty ones (think earwax).  :-) But he absolutely loves the scent of chocolate baking.    

Like many teenagers, he can spend an entire day watching movies. He hates horror stuff though. Musicals and cartoons never fail to capture his interest.

He loves music, too. In fact, the iPod is his new best friend. His favorite song: Miracle Child from Joseph King of Dreams. (Is he telling us something there?) Sometimes, though, he makes us all laugh by plugging his ears with his brother’s cellphone strap.

Outside our home, he loves watching trees sway in the wind. He looks at the clouds and squints to see shapes and lights. He waits expectantly for rain everyday; rain makes him smile. But don’t ever let him near a tree as he is totally enamored with falling leaves. Too bad if the leaves are still intact as he plucks them out gently one by one till he makes a soft pile to kick and jump on. You should hear his laughter then.  

He smiles a lot. When he does, our knees buckle with tender admiration for this gorgeous boy. In return, he teases us a lot.

     “Are you a boy?” No (serious mien)

     “Are you a dog?” No (gives a slight grin)

     “Are you a pig?” Yes (wolfish smile)

     “Is your father a pig?” No. (wide grin)

     “Is your mother a pig?” Yes. Yes. Yes. (loud guffaws from him)

This is Alphonse, son, brother, movie buff, music addict, nature lover, and half-pig - a boy just like any other.

  Cute pig

And oh, by the way, he is autistic.