Collateral Blessings

(Or How to Turn Crappy Days into Gratitude Days)

I came home with a rare social high from back-to-back outings recently. Truth is, it has been a long time since I did anything for myself and by myself that did not have anything to do with household chores and management.

The other Friday, I had gone to a very informative, whole-day baking class under Ms. Beng Legaspi. I learned loads about the science and art of gluten-free/sugar-free baking and picked up tips and tricks that can come only from years of research and experience. I also made new “Baking Mama” friends, some of whom were already pros in the kitchen.

With my “classmates” (Photo credit: Ms. Jan Rubi)

Our class photo (Photo credit: Ms. Beng Legaspi)

Then the next day, a Saturday, I attended a Sylvanian Families Christmas Party luncheon hosted by Sylvanian Families Collectors PH. I was reunited with old collector friends, Analyn and Ledz, both of whom I haven’t seen in years. I also met new collector friends, some of whom I have only seen in Facebook. I’m grateful and honoured to be friends with Rose and Robert, one of my favourite couples in the world, and with Joann, Nenette, Blair, Christine, Mely, and many others who welcomed this old Sylvanian junkie with open arms!

Sylvanian Families Collectors PH is ❤️

As you can already tell, I have been home bound for much of these past few months, taking care of Alphonse and nursing my knee injuries, that days out for myself and with friends have definitely been rare and far-in-between. A❤️, bless his kind heart, gave me the time to enjoy these events by taking over Alphonse’s care for those days. Alex, my eldest, pitched in to help, forgoing sleep to sub for his dad when A❤️ needed to do something else.

And then disaster struck.

Within an hour of my return home that Saturday, Alphonse had a meltdown that ended with Christmas ham and gluten-free chocolate cake samplers being smooshed all over my head. My short absence, coupled with the unexpected visit of relatives that day, had set him on edge, making him anxious and irritable. Even after that episode ended, when he would have otherwise been able to shrug off his nervous energy, he never lost his angry snarls and discomfiting whines. He was rigid, obsessive, and controlling, barking his often unintelligible demands one after the other the rest of the day.

To illustrate:

“Heh!” Alphonse shouts loudly to his dad. Translation: “Don’t move your leg, Papa!” A❤️ moves his leg slowly to return to an “acceptable” position.

“Heh!” Alphonse shouts again, this time at me. Translation: “Touch your glasses twice, Mama!” I nudge my glasses down my nose and up again.

“Heh!” Alphonse directs his bossiness at his brother. Translation: “Go back the house again!” Alex steps inside the house and steps back out, doing this twice, to complete a ritual that exists only in Alphonse’s head.

By early evening, we were all exhausted and impatient for the day to end. Our nerves were frayed, and we felt beaten. In the last few weeks, we had been hopeful that we had found a good formula of routine, play, and exercise to keep his bad days to a minimum. Saturday was a sudden turnaround to the progress we had been making. As is often the case with our journey with autism, when we take one step forward, we wind up taking two steps back again.

The following days turned out to be more of the same, angry, dark days that got worse at each transition point. Somehow, we found the strength to stand up and carry through each day, pacifying, calming, and working with Alphonse to dispel his anxieties.

But something worth telling happened to me that Saturday. While Alphonse had my head in a wrestling hold, his fingers alternately pulling out strands of my hair and massaging as much cake and ham as possible to my curly ‘do, I felt an unexpected wave of calm wash over me. It was weird because I suddenly felt disconnected from myself. At that moment, it dawned on me that even in that lock hold, there were still things I was in control of. I could choose to wallow in the sorrow of the occasion, or I could choose to be grateful. I had a choice.

With that, I quit struggling under Alphonse’s strong hands. My breathing slowed down. Instead of pulling away, I pushed nearer him and quietly stroked his hands. And then, I began to list all the things I could think of, making mental notes of each one and giving thanks in a silent prayer.

It started with this epiphany: Hey, my head didn’t hurt as much! It seems that short hair, even when pulled with all the strength of a vigorous, severely autistic, young man, doesn’t give in as easily as long hair does. I had rued the loss of my locks for a time but ultimately, I was grateful that Rose, my longtime hairdresser friend, had given me my (fat) pixie look.

Next, Ms. Beng’s gluten-free and sugar-free chocolate cake did not only taste good, it felt really soothing on my scalp too! Who’d have thought that was possible?

Also, Alphonse may have been raging with fury, but some semblance of restraint kicked in that day. The old Alphonse would’ve fought us off till he was spent of all his anger. His next move was patented: he would’ve kicked me in the chest even as he pulled down my hair. Yes, Alphonse would’ve wrought maximum damage easily had he wanted to. Saturday, however, despite his shouts of protests, he listened and backed down. Thank God for that!

Then too, and most important of all, A❤️ and Alex relieved me of the burden of Alphonse’s care until I could change and wash my hair. True, for a while, I did give in to tears, more from disappointment than from pain, but when my boys’ consoling arms enveloped me in a family hug, I was able to wipe my eyes dry again and feign a smile till it became real.

The way I see it, there will always be unintended, unintentional damage when it comes to dealing with profound autism. We get hurt, physically and emotionally. God knows how many cuts, bruises, bites, and wounds we’ve had to endure over the years. We get frustrated and disappointed. We become angry and afraid. We are, after all, human.

But if there’s one thing we’ve learned through the years, however, it is this: that autism, despite its many difficulties, also has its fair share of goodness – what I’d like to think of as collateral blessings.

Because of autism- and Alphonse- we discovered our personal strengths. We learned to roll with the punches and to shrug off episodes of sorrow and anger as just “blips” to a normal day. We learned to live with hope and optimism always, even when things look bleak and dreary. We honed our ability to laugh and celebrate even when we are hurt and in pain.

We found within ourselves a fount of complete forgiveness – one that comes easily and bears no ill will or grudges. This process goes both ways, as we have sometimes also inadvertently wronged Alphonse in our lack of understanding of his needs. We learned to live each day with overwhelming gratitude that springs from rare moments of peace and joy. Perhaps, best of all, we are able to recall and summon love- at will- even in the midst of horrible, debilitating despair.

Life with autism is often wearisome and difficult. But Love, we’ve learned, is not.

These are the blessings that sustain us each day.

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Raising a Child with Autism: Parents Speak

Three weeks ago, I was invited to be part of a seven-member panel of parents for a forum on raising children with autism. Organized and sponsored by Kaakibat ng Autism Society Philippines Multi-purpose Cooperative (KASPI-MPC), the forum was spearheaded by its hardworking President, Ms. Josephine Palomares, and was open to both members and nonmembers of the cooperative. Ms. Mayang Pascual facilitated the discussion and helped us get comfortable with the exchange and sharing. I was joined by one father and six mothers; our children’s ages range from 10 to 49. Each of us had at least one child in the spectrum.

I am grateful to Jo and Mayang for allowing me to share parts of Alphonse’s journey with the audience. Our story has often elicited sympathy, if not outright pity, from those who have never met Alphonse. Sure, our life is filled with meltdowns, with aggression and self-injury, with daily challenges that continue to confound us to this day, but Alphonse’s story is also a story of hope and perseverance amid a mountain of difficulties. It is a story of grit and love. And while it is important to hear those not-so-rosy parts to give people a “real” view of what autism in the far end of the spectrum is, it is equally important to recognize Alphonse as one who struggles bravely to master himself and his environment resolutely.

(Photo credit: KASPI-MPC)

We were asked to prepare a short introduction of our children for the audience. We were also given a shortlist of questions to help us prepare for the question-and-answer style of the forum. Below is the introduction I wrote, and some of the answers to the questions I was asked. It is my hope that parents who read this find encouragement and recognize that their love and acceptance can open up their child’s world.

Alphonse is exactly 23 years and 3 months old today, and yet, for all the years he has lived, he remains very much a child in interests and behavior. He loves Disney musicals, Ava and Dave, and Princess Sofia. He is afraid of the dark, of fire, and of spiders. On hot days such as this, you can almost always find him playing with a large basin and a hose. He jumps in his big trampoline when he feels like it or paces around the house, but you’d most often find him in the garage, sitting in his plastic patio chair, blowing endless bubbles.

“Blues brothers cool!”

Alphonse lives a solitary life with his parents and brother. He has no playmates or friends. He hardly goes out because crowds and noises overwhelm him. The closest person to a friend he has is his older brother. Together, they hang out in the schoolhouse aka playroom aka boys’ pad, Kuya playing with his consoles while Alphonse watches or blows bubbles beside him. Despite this, he is a generally happy fellow, sweet and lovable. He loves to sit on his dad’s lap. He helps his mom adjust her glasses when it falls off her nose. And he follows Kuya everywhere, even to the toilet, where he sits by the door and patiently waits.

“Aarrr, I am cutie,” says pirate Alphonse, with his hook nose and nasty snarl. Argh!

To many, Alphonse may seem to live a limited life, holed up within the four walls of our home. The happiness Alphonse shows, however, proves that he is exactly where he needs to be, doing exactly what he wants to. He is at peace, and, as a result, so are we.

Q: When you found out that your child has autism, How did you feel and what did you do to deal with the situation? Did you have a denial phase?

A: Alphonse was diagnosed at 18 months of age, a few months after we began to notice that he was no longer talking. I think the period between recognition and diagnosis was my denial phase. Back then, there were days when Alphonse seemed connected to us, making acceptance difficult, if not impossible. I dealt with the denial by burrowing myself in information, trying to convince myself that what we were seeing had some other possible explanation, something other than autism. When the developmental pediatrician gave us the diagnosis in no uncertain terms, denial was no longer possible. What came next was a period of grief and guilt, of wondering how and what I could have done to change the outcome of things.

Q: What challenges did you face or are currently facing now at this particular stage?

A: Alphonse is 23 and is a young adult. Were he neurotypical, he would have graduated from college by now, be employed, perhaps even have a girlfriend. Today, he is a man-child, someone whose interests are limited still to childish pursuits, and yet he is physically and physiologically a full grown adult male. The greatest challenge we face these days is trying to reconcile his physical strength to his cognitive abilities. The disparity is so great that it has caused our family difficulties, especially during his periods of stress.

Q: What were the kinds of interventions you employed and what were the most effective? Did you undergo any difficulty engaging those services?

A: A few days right after diagnosis, Alphonse went to school for early intervention. We did the usual- sped, speech, occupational therapy. As he grew older, we added additional services such as play and aqua therapy. We changed and supplemented his diet. His behavior started to deteriorate when he was four, causing concern and reluctance in some institutions to allow him enrolment. For many years, Alphonse could not be accommodated in group therapies and received one-on-one intervention. When he was nine, we made the decision to home school him. That, I think, has given us a better outcome, albeit it has not been a perfect one.

For us, ABA was the most effective way by which Alphonse learned. Today, however, because he is slowly manifesting a greater desire to participate in relationships, I feel that the Son-Rise program is also helping us make headway in acquiring his full trust.

Q: What were the big & little victories of your child and what were the personal breakthroughs that you had or are presently having?

A: No one knew Alphonse could read. We never even tried to teach him because we got stuck in the alphabet. Whenever teachers would try to read him books, Alphonse would grab the books and rip them to shreds. We noticed, however, that whenever we would read aloud to his big brother, Alphonse never left the room. This was the time Harry Potter was really big and my eldest son was so engrossed in it. On a whim, we decided to ask Alphonse questions about the book and give him choices written in paper. He gave us the correct answer each time.

I wish I could tell you that this was the magic bullet that solved all our challenges. Alphonse’s difficulties are so severe that moments such are these are few and far-in-between. Yet each time he looks at us, comes to us for a request, asks us of anything, that I feel is already a breakthrough because it goes completely against isolation and everything his autism is.

Q: How did having a child with autism change you & your family?

A: I have to admit, Alphonse was and is the center of our world. I wish I could undo that, for my eldest son’s sake, but that is done and nothing can change that anymore. Perhaps that’s one of the few things I would want to change- to not be so caught up in autism that everything else in our lives became secondary, sometimes even our own personal needs and desires.

The best thing to come out of my son’s autism is that our family has become stronger and more united. I’m sure a lot of families can identify with that but our son’s difficulties have taught us that we are stronger than we think we are, that there is nothing that can bend or bow us as long as we love each other.

Q: What are your aspirations for your child and how do you plan on making that happen?

A: I am still working on giving Alphonse his voice, so no matter how old he is, we have not stopped his education. As he grows older, I have learned to modify my expectations and not set his value based on what he can do or not do. In the end, I just want him to be happy. To know that he is always loved so he need not hurt others. To find peace in his body and mind so he will no longer hurt himself.

~0~

My grateful thanks again to KASPI-MPC, and to all the other parents who shared their experiences with us. I learned a lot from all of them; their willingness to teach and share what they have learned in their own journeys is a gift to those who follow in their footsteps. To Max, Doris, Imee, Ma’am Emma, Dr. Lirio, Ma’am Carmel, and to Jo and Mayang, God bless you all!

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 13th, 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.