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

Archive for April, 2008

Fill ‘Er Up

Friday, April 25th, 2008

I think A realized that I was this close to “flipping out”-  from dealing with this nasty, mutating cough bug, and with Alphonse breathing down my neck almost every second of the day (yup, he’s that close!), to unfinished work staring at me like a guilty reminder of sin, and still the day-to-day demands of a household — that he’s been very generous with the time I spend outside the home. Many times, he would take over the responsibilities of the household (including care of Alphonse) just to give me some breathing space. And I really, truly appreciate his kindness.

When Toto came to the country, A got us tickets to the show so he and I could have some time alone. Unfortunately, I was running a fever then and was hardly in any mood to jam with the band. Still, not wanting to spoil the mood, I went along, only to be horribly dizzy when the band segued into snippets of popular songs like Rosanna and Africa.

Three days later, Swing Out Sister was in the country, and once again, A and I had tickets. This time, he was the one who was febrile and coughing. While I enjoyed this concert more than I did Toto’s, it was hard to soak in the pleasure of the moment when your partner was almost delirious with fever.

Later that week, my brother and his family invited us to lunch at a country club to celebrate my niece Arielle’s 13th birthday. The whole family came, including grandparents and aunts and uncles. Then the boys (my brothers, A, and Alex) went bowling in the afternoon while Alphonse and I quietly watched and enjoyed from the sidelines. I’ve never seen him enjoy a day as much; usually, we’re not able to stay in one place for any longer than an hour. That day, Alphonse was all smiles as he basked in the loving attention of his family. 

The next day, April 14, A and I took a couple of  hours to attend the launch of Batjay’s “Mga Kwento ng Batang Kaning Lamig” at Fully Booked at The Fort. A and I are fans of Kwentong Tambay, Batjay’s weblog, and so we got a copy of his book to have it signed. I saw him at the corner of my eye while I was queuing for books. He was having pictures taken at the time, and my hand suddenly itched to grab a shot, too. Unfortunately, I was struck with a sudden case of shyness so I waited for A to catch up with me (he was paying for the book at the ground floor) before we went up to introduce ourselves. As much as we would have wanted to stay for the duration of the launch, A got a call and had to get back to the office. I had to get back to Alphonse, too, who was waiting patiently for me at home. Still, I got a book signed, and even without the BatJay’s picture to complete the experience, meeting one of our favorite bloggers was definitely well worth the trip.

I had a meet-up with friends the next week, all moms of Alex’s classmates. Being part of the same class has forged a special friendship and kinship among us. I’ve made quite a lot of friends in the last year, yet none as special as these moms. For people who’ve achieved and done so much, they are truly some of the kindest, humblest persons I’ve ever met. That was an afternoon well spent in talk and food. I truly love E, C, and S! (Not to mention C, S, R who were not able to make it that day.) Later, C and I went for coffee and more talk, until Alex called me up to remind me to go home early since one of the nannies was leaving. Drat!

These days, I’m attending a night school of sorts. Six to nine in the evening for the past five nights has been my “away” time from the family. A encouraged me to sign up for a special 10-day Applied Behavioral Analysis training program for parents run by Mrs. Miriam Sy, our gracious host, and Teachers Ian Agustino and Anna Abad (two of only three ABA practitioners with individual accreditation from the Philippine Association of Behavioral Analysis in the country; teacher Ian also used to be Alphonse’s case manager). We are a motley group of 14 parents- two dads, two love teams (husband and wife), and eight moms. All of us have children with autism of varying degrees and diagnoses, with ages ranging from two to 13. I immediately bonded with the moms of older kids, but the entire group is very easy to get along with. We have a lot of fun working out on training scenarios. Moreover, I am impressed by our teachers’ abilities to translate theoretical knowledge into more tangible experiences for us. We’re set to complete the course on Sunday, and while I’ll be very happy to have more time at home, I’m almost sorry to see an end to our “school” nights.

Looking back, I think A knew that I needed these activities to sustain me when I was near empty. When I reflect on A’s generosity and concern for me, I can’t help but be eternally grateful that this loving, loving man is mine.

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.  

When It Rains, It Pours

Tuesday, April 1st, 2008

a WALL of Awards (wow!)

I love awards as much as the next person, and I certainly welcome any and all awards/ badges that may come my way. This humongous award comes from Teacher Julie and I am astounded at the sheer size of it all. (Thank you! Thank you!)

To top it all, I haven’t gotten around to posting this giant award when she decided to send more love my way via this:

More awards

Oh, my, I feel truly blessed! (Not to mention spoiled!) I do have an issue with the Sexy Blogger Award, not that I mind being called “sexy” (as they say, being sexy is all a state of the mind). May I change it to Hefty Blogger Award, just this once, for me? The latter definitely rings truer. :-) Whenever I hear the word “sexy,” I am reminded of six-year-old Alex’s retort when I asked him why he didn’t used the word to describe me in his essay. “But Mama, that would be a lie!” Yeah, kid, way to suck up to Mom. (Haha!) 

Okay back to the award.

As much as I love receiving these wonderful awards and badges, I can think of no better use for them than to share them and spread the love around. I love all the sites I’ve listed in my blogroll, but I do have some “staples”- places where I can be found hanging out, lurking, loitering, or simply visiting any time of the day. I am drawn to them because they speak of a theme which, despite the thousands of miles among us, unite us: Autism. 

Today being the first day in Worldwide Autism Awareness Month, I am dedicating this to: Susan Senator, Beth of Fragile What?, Bud’s Mom at Mom-NOS, Kim of Mommyhood, Casdok of Mother of ShrekBabs of Awalkabout’s Weblog, Maddy of Whitterer on Autism, Leirs of Mushings, and Cris of Eclectic Journals. These moms are my lifelines in the often confusing world of parenting a child with autism.

So to you, my dear friends, I dedicate these gifts of the heart. In a world often struggling with strife and intolerance, you live with more complex challenges than “normal” families do but you do it with so much aplomb, dignity, and love. I have learned so much from all of you about understanding, acceptance, and tolerance. Your eloquence, empathy, and support make me hopeful that a better world can be created for all our children.

You are my heroes.