Wake-Up Call

I didn’t realize it was Wednesday all over again till I sat down and found corned beef at the breakfast table. Corned beef is always Wednesday morning’s breakfast, the same way tocino (sweetened cured pork) is on Sundays, or boneless tinapang bangus (smoked milkfish) is on Saturdays. Everything is downright predictable in this household, save for some rare days when someone wants French toast made from old raisin bread with a generous dollop of apple cinnamon marmalade (that someone is usually me), or a less imaginative but always hungry young man wants fried crisp Spam with garlic rice. Regular days with regular schedules keep this household running smoothly… until something goes wrong, that is.

I wanted to share the details of Alphonse’s most recent misadventures, but on advice from my better half, decided against it. A feels that Alphonse deserves a bit of privacy to his life and that as Alphonse turns older (he will be 16 in exactly 14 days) I will have to be more discreet about the things I share about him with the public. I should have realized that much earlier. That Alphonse has autism and that he still is very much a young child in terms of cognition and experiences should not take away his right to privacy. This is most important now that he is on the cusp of manhood and on the brink of a new self-discovery and voyage. Some things- not all- will have to be just among the family.

I write about my children often, that cannot be denied. When they were smaller and my world revolved around parenthood, every single moment of my life was about them. It would have been impossible then to separate the writer from my person as a mother, seeing how my history and experiences of the world were almost always seen through this particular perspective. And yet, now that the kids are beginning to pull away from my apron strings, I will have to let them speak of their own lives themselves and choose what they want to share with the world or keep to themselves.

The truth is, it’s difficult not to see Alphonse as a baby, not when he is dependent on us for almost everything. From morning till night, his world is the world we built for him. Even as we help him discover new things in the world, this home, this life, and this family are the things that keep him grounded to us. We look at him and still see a child when the whole world already sees a young man. I guess that’s where the lines are sometimes crossed, when I share too much of his life that may not be mine to share anymore.

I won’t stop writing about my kids, but I will be more discerning when I do. I will keep in mind that these are young men, who regardless of their abilities and/or disabilities, must always have a choice on who and what they want to be. It won’t be long now before they test their new wings. As a parent, all I can do now is to let them fly.

Parental Intimacy 101: PDA

It was one of those rare nights when we were all done with chores and homework early. It was time to relax and unwind from the long day. My husband and I wanted to catch a show on television and my son asked permission to use the brand new desktop (mine! all mine!) in the room.  

My husband and I lay in bed, watching, when I moved nearer to my husband to cuddle. He welcomed me into his arms. During a commercial break, something struck me as funny and I whispered this nonsense to my husband. We started whispering to each other some more, and after a while, we were giggling like crazy kids.

Alex suddenly turned his head to us, a look of sourness crossing his face. “Guys, go get a room! Please!”

My husband and I burst into laughter. “Son, this is OUR room. Why don’t you go to YOUR room?”

Then we started laughing again. Alex stood up to leave, muttering a loud “Rats.”

In son’s words, “PDA in Parents. Ewww.”

Freedom from Hello Kitty Oppression

Hello Kitty Hell had another hilarious post last Thursday (March 18) and it reminded me so much of my eldest son’s relationship with all things Hello Kitty that I simply had to write about it.

It used to be that I got the run of the house as far as decorating was concerned. Our bedrooms were filled with girly things and the boys – all three of them – endured this mixed explosion of pinks and Hello Kitties without complaints.

As Alex grew older, however, he began to express his displeasure at having to sleep on Hello Kitty sheets or even wear Keroppi pajamas to bed. At six years old, he insisted on blues instead of pinks and willfully demanded Pokemon instead of Hello Kitty. My husband, perhaps seeing his chance at a Kitty-free zone, seized on my son’s demands and negotiated a treaty we all had to agree to. No more Kitties for the boys (except Alphonse, but only if he wanted to) and no more Kitties in the bedrooms, except for a small designated space by my side of the bed. Hello Kitty in the bathroom was a last concession, and Alex, in particular, seemed to find it funny that Hello Kitty stays with his poop.      

“Freedom from Hello Kitty Oppression,” my smart aleck son calls this movement, and his reluctance to have anything to do with Hello Kitty has only grown stronger with time. When he was younger and I could still force him to accompany me, he always showed his disapproval by standing in protest by the nearest escape route. He was immune to Kitty’s charms and not even Hello Kitty Café and its food could entice him. If you look closely at the picture below of him and me at the Café (Alex was only eight then), you will see that I had to hold him by both arms to keep him from breaking free. Today, Gift Gate is still the last store he would be caught alive in.

Son: "Let me go, Mama!" Mom: "Not before a picture, son. Now hold still."

These days, even Alphonse seems ready to break free from my Hello Kitty strings. One minute he’s cuddling my Hello Kitty dolls, the next, he’s decapitating them. He’s also given up the pink Hello Kitty comforter in favor of his red Spiderman blankie. As much as I wish otherwise, he’s starting to exercise a little bit of independence from my Hello Kitty influence. He’s not totally there yet, but one day soon, I fear that he will be.

Ah, these are the times I would have really wanted a daughter. Sigh.

When You Say Nothing At All

In the car tonight, on the way home from picking up a new rice cooker*, I accidentally dropped my PSP and it slid right to the back of the front passenger seat.

Surprised, I blurted out  “Son, can you hand me my PSP?” before I realized that it was Alphonse, my son with severe autism, I was talking to. 

“Oh, well,” I thought to myself, “I’ll just get it when we get home.” I was already feeling a little cross at my carelessness. I was also worried that he might accidentally step on it.

A few seconds later, I felt a light tap on my right shoulder. Alphonse’s hand silently reached out to me from the back and handed me my PSP.

I flipped the mirrored visor to look at him. As our eyes met in the mirror, I thanked him for his unexpected kindness. He nodded his head and smiled at me.  

Always presume intelligence (even when it is not apparent). People with autism will surprise you, if you just give them a chance.

 ~0~

*Why do we need a new rice cooker? A masterfully executed roundhouse kick led to its untimely demise. This is our third rice cooker in as many months. Alphonse obviously hates them.

Prom

Published in Herword.com on February 16, 2009

Saturday night, the 13^th, was Alex’s Junior Prom and I had butterflies in my stomach. I guess it really is different when things happen to your child than when it does to you. My son was as cool as a cucumber the whole day, lazing in his bed and reading a book, totally self-assured and confident. He was completely oblivious to the stress I was feeling. I was the one who was a wreck. I worried about his clothes, the shine in his size 11 shoes, his untamed unibrow, his hedgehog hair, and the wrist corsage and bouquet of flowers his father ordered for his date. I even worried about the little skin imperfections that marred what used to be perfectly flawless baby skin.

I envy the confidence of teenagers. Adolescence is the time when the whole world lies perfect and open and ready before you. It is an age of optimism and hopefulness. It is a time when all your potentials and possibilities seem endless. I guess I used to be like that, too — full of dreams and imaginings, unscarred and unscathed, unafraid and unbowed. And now, here I am, inching my way through midlife, and I can’t imagine how it is to be a teenager anymore.

I attended my Junior Prom 26 years ago, in 1984. I have one picture from that night, the only one I could still find. In it, a slightly overweight, long-haired young girl in a purple dress smiled shyly for the camera, a bright-eyed, shiny-faced adolescent boy in a gray suit, most probably borrowed from his father, standing beside her. I was 16 in that picture, too young to have ever had my heart broken (it would be a few more months before that happened). The young man beside me, with pimples and sculptured bangs, was my best friend. He would become my husband.

I look at that picture now and wonder: what was I thinking then?  What was he thinking in that picture? And how did we get from there and then to here and now without falling into the crevice of unalterable life-dooming mistakes? I close my eyes and try to put myself back in that particular point in time, without success.

And this is where I find my worries multiplied a thousandfold today. For even now, as I write this, I am planning days and months and years ahead, trying to make a life plan for a child whose desire to coast happily along life is perhaps equaled only by his carefree, laid-back ways. My first born, at 17, is clueless to the pitfalls and snares of this cruel life, and I am afraid to let him go.

Were it up to me, I would put Alex in a bubble. I would shield him from mistakes, screen him from pain, and protect him from anyone who would damage his heart and spirit. And yet, I try to remember that in a distant time, I was once young too. And perhaps, having made the mistakes I did — of falling too fast and too hard, of rushing headlong into decisions, of being impulsive and reckless as only the young can be — and facing the consequences of my actions, whether good or bad, squarely, I am all the wiser for it.

I can’t stop time, no more than I can stop my child from wanting to grow his own wings. And so I resolve to embrace it, trepidation and fear giving way to a brave hope that my husband and I have taught our son well and the lessons we have passed on to him have taken root. It’s the only way a parent can survive growing-up and growing-old pains. I am afraid still, but I am always hopeful.

Balloon Love

This is the balloon Alex brought home for me a week ago. It’s a little deflated now and needs a little propping up to stand straight but I still like to look at it every day. Alex had gone to afternoon mass with the other boys of Dulaang Sibol at the Dela Strada Parish that Wednesday. On the way back to school (where he would be fetched by his dad), he bought one for me. He held it in his hand the whole time – from Katipunan Avenue through Miriam College, all the way to Ateneo High School.  He got a lot of goodnatured ribbing from his friends along the way, but he was always quick to say “This is for my mother.”  This from a boy who does not set foot inside any Gift Gate or Sanrio store. What an absolutely sweet gesture.

It wasn’t actually my first HK balloon. I had gotten one like it a few weeks ago, an after-mass gift from A. Here we are, mother and son, in a picture with my first Hello Kitty balloon. Alex must have observed me prancing happily back to the car.

This unexpected gift was truly a very pleasant surprise. Alex and I have been working through some issues together over the last few months. I know he and I  have not been the best of friends for a while now. I know too that sometimes, he chafes under my strict rules and the limits I set for him. But I also know that whatever happens, there is always, will always be, love between us.

A love that endures all. A love expressed through a simple toy balloon.

Thank you, Alex. Mama loves you always. ♥

Honesty Is The Best Policy

Smiling his way out of trouble

A few nights ago, before bed:

Mama: Alphonse, were you a good boy today?

Alphonse shakes his head “No,” then giggles loudly.

I had been gone almost the whole day that day. My errands took longer than expected and he was left home with his nanny. That evening, Nanny Lyn had told  me that Alphonse had grabbed her shirt a few times in the morning.  

Mama: Did you pull hair today?

Alphonse: No (still giggling)

Mama: Did you throw your toys?

Alphonse: No (snorts loudly)

Mama: Did you grab yaya’s shirt?

Alphonse: Yes (smiling broadly)

Before I could say another word, he puckers his lips and peppers me with kisses. How could you get mad at that?

You’ve got to hand it to him. Honesty is ALWAYS the best policy.

A Common Journey

It was my sister who first put the words “autism” and “Alphonse” together in one sentence. She mentioned it before anyone else, before even my son’s pediatrician.

Alphonse at 18 months old

She was still in medical school then. She had been playing with her nephew for a few hours that day when she stopped and looked at me. “Ate, I think there’s something different about Alphonse,” she said slowly, weighing her words carefully.

My reactions, as expected, were instinctive, a mother grizzly defending her cub. When you have an absolutely gorgeous fourteen-month-old child, you’re loath to believe anything can be wrong with him. “There’s absolutely nothing different with him,” I brushed her off, hoping the tone of my voice would be enough to dissuade her.

“But, ah, ehm, have you heard of autism?” she persisted, her voice quivering. “Well, you see, we just had a lecture on it and, uhm, I have my Nelson here and…” (Nelson is the Nelson Textbook of Pediatrics.)

“Yes, I have, but what does it have to do with Alphonse?” I distinctly remember feeling hot and faint at that moment. My voice was slowly turning shrill, as hysteria and anger started setting in.

“Well, I think he has it. He might be high-functioning, you know…” I didn’t give her time to continue as I scooped Alphonse in my arms, glared at her malevolently, and left the room. How dare she! My very own sister!

In the weeks that followed, however, her words gave me the impetus to observe and look at my son with a more clinical and objective eye. Alphonse was adorable and chubby and cute and everything infants and toddlers were. It was gut-wrenching to acknowledge the things he did as anything other than “normal.” Flapping. Toe-walking. Spinning. Walking in circles. Loss of eye contact. Loss of language. By then, it simply was too difficult to deny anymore.

We all have taken those steps toward the realization that our children are different from their peers. Mine started that way, on one seemingly innocent afternoon that changed the entire course of our lives. In Valerie Paradiz’ and son Elijah Wapner’s lives, things were more turbulent, even more frightening, as Elijah, then only two, was afflicted with seizures. As terrifying as the idea of a child retreating into his own world is, even more frightening to parents is the prospect of watching helplessly as their child battles the demons of his own body.

Valerie Paradiz and son Elijah

Valerie and Elijah’s journey is as unique as Alphonse’s and mine, and as that of any other parent and child with a diagnosis on the spectrum. But I am in awe of their story, of their struggle and growth, and of their love and acceptance, as their journey marked not only milestones for their family, but for the larger community of individuals with autism all over the world. In Valerie’s quest to help her son, she finds a way to help others as well. How she translated her life’s work as teacher and writer into a vocation of reaching out to individuals with autism through appropriate education and self-empowerment is truly amazing.

Ms. Paradiz is one of four major speakers at Autism Society Philippines 11th National Conference this year. She will also conduct a day-long seminar on Integrated Planning and Teaching Menus on October 26 as follow-up to the conference. As pioneer of innovative educational programs for individuals in the spectrum, she will impart with us her experiences and knowledge in encouraging learning in our children. Specifically intended to parents and professionals, she speaks not only as a teacher and parent, but also as one with Asperger’s Syndrome herself. Her insights are valuable as she treads between our world and our children’s, with the hope of making them one.

This year, the theme “Autism Beyond Borders” is particularly apt in light of our efforts to cross cultures, languages, and, with hearts full of hope, prejudices and biases. Indeed, autism is no longer a single experience limited to those who live with it. Today, autism is all over the globe, reaching many families from all walks of life. Mine is one of them, Valerie Paradiz’ another. I embrace her as a fellow sister in our common journey.

~0~

Recommended Reading: Elijah’s Cup: A Family’s Journey Into The Community And Culture Of High-Functioning Autism And Asperger’s Syndrome by Valerie Paradiz
  

Autism Beyond Borders (where HOPE prevails), Autism Society Philippines 11th National Conference will be on October 24 and 25, 2009 at the SMX. A two-day post-conference lecture series (whole day sessions with Ms. Valerie Paradiz and Mr. Toshihiro Ogimura) follows on October 26 and 27, 2009 at the Skydome, SM North EDSA. Register now to avail of early bird fees, now until September 30 only. 

Baby Blues

I was digging in my plate of tempura and maki when I felt little hands touching my back. I turned around very slowly. Behind me, a little girl, probably around two years of age, poked the hello kitty figures in my shirt, mumbling “one, choo, chee, one, choo, chee.” She counted as she touched them, oblivious to the fact that she knew how to count only to three. I didn’t want to let on that I noticed her until she poked a little too hard and I laughed out loud. I couldn’t help it; it tickled. I heard her scurry away.

My husband, a plate of sashimi from the buffet in his hand, noticed that the amused look on my face. “What are you smiling at?” he asked.

“Oh, honey, you didn’t see the little girl playing with my shirt,” I laughed as I scanned the room to look for her.

“That little girl?” He pointed discreetly to a pigtailed girl in a pink Dora the Explorer outfit, perched on a high chair, chewing loudly on tempura.

“Yes, that one. She is so cute!”

“Uh-huh,” my husband conceded. I could sense he was losing interest quickly, so I decided to surprise him with the following question.

“How would you like to have a little girl of our own?”

My husband stared at me uncomfortably, shocked at the sudden turn in our conversation.

“Where’d this come from, honey?” Of course, he wanted to know.

I suppose I’ve been thinking of it for a time now. It must be why “Jon and Kate Plus 8″ (even with all their new troubles) is a prominent feature in my daily viewing fare. Or why I get caught up in the ongoing media frenzy on Nadya Suleman, mom of 14 children, all of them conceived by in vitro fertilization, eight of them octuplets. Or even why the recent news of Elizabeth Adeney, the 66-year-old woman who is dubbed “Britain’s Oldest Mother,” fascinates me. What they all make me painfully aware is that I am not getting any younger. Midlife has set squarely upon my shoulders and the faint tick-tocking of my reproductive clock reminds me that I have only a few more childbearing years left.

I’ve mulled over this issue seriously, and, in truth, I have not yet reconciled myself to the idea that I have only two children. I come from a large family of five kids and I have always wanted my children to be part of the same. And so, for many years, my husband and I tried to have another baby. Four miscarriages after Alphonse (the last one endangering my life), after all sorts of medical tests to determine that neither my husband nor I were incapable of having another child, and even after a short-lived attempt at fertility treatments to increase our chances of pregnancy, he and I arrived at the conclusion that it was simply not going to be as easy as having children in our twenties.

My last pregnancy ended in a devastating miscarriage, and had our child lived, he or she would have been seven today. As it turns out, I am now the mother of two teenage boys and no longer a young mom of little kids. But, ah, I miss having a small one in the house. I miss baby smells and soft, smooth skins, and even a baby’s smallness as he cuddles close to my body. I have a bad case of baby lust, I know, perhaps made worse by my pre-menopausal hormones going awry.

Over the last few weeks, however, I’ve been given a test of resolve and commitment. With the entry of two young boys in our lives (see previous post), a five-year-old and a two-year-old, I’ve had a preview of how my life would be as an older mother with two small children. Here in my home as temporary guests, they call me Mama P.

This past month has been an eye-opener, I must admit. So used to having only Alphonse as my sole concern, I now oversee their welfare as well. Are they fed? Are they bathed? Is someone watching them? Why is the older one left in front of the television all day? The two-year-old is particularly difficult to care for, as he remains wary of us and cries constantly for his mother. Alphonse, ever the tyrant and determined to impose his own rules, wants his old nanny back and grabs her by the hand, even as her little one wails for his mother.

I like that the five-year-old now kisses me and greets me in the morning. I like that I see them smile when good food is set before them. I like that they’ve lost their gaunt looks, and grime and dirt have been washed off their cute faces. I even like it when they ask me for chocolate milk and eat all the bread in the house (well, okay, okay, I don’t like this last part so much). But while their laughter fills my heart with joy, their cries, shouts, squeals, their constant demand for attention, their bickering and squabbling have cured me of any notions of wanting a bigger family. Add to this the extreme jealousy Alphonse feels whenever we give these boys any attention, and I am absolutely done with any fantasies or illusions that I can deal with another child. My body may still be able to do it, that I am positively sure, but my emotions and my state of mind tell me that I am simply too old, or too sane, for it.

Tonight, as I readied myself to turn in bed, Alphonse tugged at my night shirt to sing him a lullaby. This is a constant ritual. Every night, wrapped in his dad’s and my arms, my husband and I take turns singing him lullabies. As I sing softly, I am reminded of how much this child needs so much from both of us. True, love is never ever divided, but time, money, and attention often are in big families. Or in families with special-needs children. Perhaps the time to have another child has passed, I thought soberly, as I patted Alphonse gently to sleep.

Alphonse sighed as he fell into deep sleep. I kissed him on the cheek and whispered a prayer of thanks. I have two children, and that should be enough for me. After all, if it’s a baby I want, I have this one for all time.

Originally published in Herword.com

~0~

Update:  The little kids have moved out of my home, their parents wanting to be near their own relatives. My home is now silent most days.

Smile, Baby, Smile

Last week, I wrote about adolescent angst and how it’s making itself felt in my household of two teenagers (technically, both my boys are teenagers by chronological ages, but the young one is still a little child in many, many ways). Of late, it has been one issue after another: late bedtimes, chronic daytime sleepiness, inattention and apparent deafness (or just selective hearing), repeated (^nth power) requests to use Yahoo Messenger, and worse, going through a PhP300 prepaid cellphone load in just a matter of days!

We’ve slowly adjusted our household rules to address these issues. For example, his late nights do not worry or bother me as much as it did in the beginning. Studies have shown that the period of adolescence brings about a change in circadian rhythms. While the the sleep-related hormone melatonin remains at a constant level from childhood to adolescence, alterations in the timing of its secretion by the pineal gland affect their sleep-wake cycles. Melatonin secretion occurs later at night, making early sleep difficult, and turns off later in the morning, making early wake-up time just as difficult.  

Alex, who used to have a 10 pm bedtime at age 12, now can’t sleep earlier than midnight, and this we understand and accept fully. On a regular school day, he averages only five and a half hours of sleep (12 MN to 5:30 am) as school starts at 7 :45 in the morning. Thus, on weekends, if his schedule allows for it, we let him stay in bed longer to make up for lost sleep.

The other issues are a bit trickier. When he “seems deaf,” do I just repeat myself? YM requests must  answer a need, and not necessarily a want (like, is it for homework, or for socialization), but I find myself questioning and second-guessing myself if I limit his social interactions with this rule. Ahh, no easy answers, it seems.

And lastly, the sudden burgeoning of his cellphone load expense. Last year, PhP300 lasted him two months, but now, we see his load dwindling in a matter of weeks, days even. To instill in him some fiscal responsibility, we decided to make him buy for himself every other load card he needs. So,  on an alternate loading schedule, we share in the burden of his expense.

I find myself thinking about him more and more these days. I worry about him now more than I do his differently abled brother. Autism is difficult, true, but at least we have a clearer sense of how much Alphonse needs us and how long we will be in his life.  With Alex, there are so many possibilities- a million potential outcomes, it seems- that I worry about the choices he makes and how it will affect his future. The changes that seem to come almost every day leave me unsettled, wistful, and nostalgic. Sigh.

Every now and then, though, I still see glimpses of the little boy who followed me around shouting “I love you, Mama’ in sing-song fashion. Of the chubby six-year-old boy who refused to leave my side. Of the twelve-year-old who broke out in song every chance he could get, singing the Les Miserables libretto by heart. 

On a day like this, when he and his father exchanged ridiculously funny messages on SMS.

And on a day like this, I just have to remind myself to stop worrying and to “Smile, baby, just smile.”