Tag Archives: Love♥

Raising a Child with Autism: Parents Speak

23 Mar

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!

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To A❤️

30 Dec

Every year, as the minutes and seconds wind down toward the end of December, we find ourselves with renewed anticipation for the waning days of the year. While Christmas passes sedately in an autism household that does not care much for- or cope with- rowdy and frenzied celebrations, this enthusiasm breathes new life into our holiday merrymaking. This eagerness, however, is not for New Year’s Eve, which will not be for another 24 hours. And certainly not for the first of the New Year, which is a day we all seem to both await and dread. For me and my family, the 30th carries far more weight than any other day of the holiday season, and with good reason. On the 30th of December, we celebrate A❤️’s birthday.

This is one of my favorite pictures of my husband. 😍

I met A❤️ when I was 14 (he was 13) at the Philippine Science High School. We weren’t classmates right away, just two freshies thrown together for a debate team. He was six inches shorter than me, and skinny to boot, with hair always slick wet from Vitalis. Not my type, for sure. 😜 Lest you start to feel sorry for him, though, allow me to state that the feeling was completely mutual. We became good friends, true, and somewhere down the line, we would become best friends, but we never saw each other as anything more than that for years.

We grew up together in the warm, nurturing environment of Pisay, where we were both free to become the geeks and nerds of our dreams. Talk was one thing we had in common. He and I would spend hours freely talking about anything and everything we thought of, and friend that he truly was, he allowed me to hog the conversations most of the time. He bore with me patiently, never mind that he once described me in my junior year slam book as loquacious and voluble, a kindness when I think of it, especially when he could have simply have said I talked too much. Even when he and I went to different colleges, we bridged our friendship with snail mail and calls he made on the pay phone at Bellarmine Hall.

On his 19th birthday, he finally noticed I was a girl. Maybe the chocolate cake I brought to his birthday party did the trick. Maybe it was that single “happy birthday” kiss on his cheek. I don’t know why or how it happened, but having just come back from an extended stay in the United States, he said he woke up one day feeling like he couldn’t breathe without me. Thirty one years later, he says he still feels the same way.

And this is why when the 30th of December rolls around, I am reminded of the greatest gifts the Lord has ever given me- the gifts of undying friendship and unconditional love. This man has seen me at my worst, at my ugliest, and at my fattest, and yet he loves me all the same, cellulite, stretch marks, wrinkles, and all. He has stood by me through our difficult days, leading by example and with such faith and trust in the Lord that I myself did not possess. His is the hand that has pulled me many times from the brink of despair and the edge of sorrow. Today, many years after that day he first told me he loved me, he continues to show me what the meaning of true love is. I only have to look in his eyes to see.

Happy birthday, A❤️, my love, my best friend. I love you so.

Silver Linings

11 Apr

A friend asked me last night, “How does that make you feel?” referring to the fragile relationship I have with Alphonse these days. I had to pause and think of an answer. I haven’t been asked that question in a long while, so concerned are we all about Alphonse that no one ever bothers to ask how each of us feels anymore.

I told her I was sad but at the end of the day, it wasn’t about me, it was still all about him- Alphonse. Because no matter how hard we try to NOT make him the center of our lives, he IS. And it isn’t because we choose to. It isn’t because we’re masochistic martyrs who need the drama in our lives. It’s because he NEEDS us to. There is no one else but us. If somehow, by some strange twist of fate, he gravitates towards the periphery of our family’s life, if he becomes less important than he is now, then who else will be there for him? No one. Sad but true.

The truth is, I am still mourning over the ways my relationship with Alphonse has changed. I no longer have 100% participation in his daily life and it is not because of lack of trying. The many times I have tried to insinuate myself in his daily life, he would lash out at me with violence and anger after an initially very positive response. It’s a special kind of anger he reserves solely for me, and not for anyone else. Certainly not for his nannies who have become the orbiting satellites of his existence today, and if only for that, I am still deeply grateful. I cannot bear the thought of him hurting anyone else.

Then too, my presence creates more work for them, as they end up mopping after the emotional wreckage that Alphonse becomes after days with me. They are the ones who have to calm him down, who have to help him process this rage and let it go. Me, I feel like a puppeteer most of the times. I hold the strings that move our lives, but these strings also keep me always an arm’s length away from him.

As sad as I am over these changes, I do understand that he will have to move away from me to grow. If I allow Alex, my eldest boy, his freedom to be who he is without me hovering like a helicopter parent, then I must accept that Alphonse, by virtue of his age and size, requires that same kind of freedom from me. It’s a difficult and tricky slope to maneuver, balancing his special needs (of which he requires almost 24/7 supervision) with his desire to become an individual separate from me.

Still, there is no time to wallow in self pity. Battle scarred as we all are now, we’ve learned to seize opportunities when they do come. The early mornings when he wakes up and there’s just the two of us around, those are mine, all mine. That’s when I still sense the special closeness that existed between us all these years. That’s when he recognizes me as Mamam and calls me such. I cling to these moments fiercely, guarding them as my precious, albeit, tenuous links to my baby, now almost all grown.

When the clouds are forever hiding the sun, you learn to squint your eyes and look hard for the silver lining. And true enough, by God’s mercy, they are always there.

First of the Season

17 Dec

With Christmas just eight days away, I feel the mounting pressure of finishing our family’s shopping list. This is the latest we have ever been in all of A and my years of shared holiday shopping and right now, I am feeling a little overwhelmed. There are last minute sales all over the city and all one needs is a little patience and lot of time to go through them. I have never been short on patience but it seems I am running out of time.

While I hyperventilate and deal with anxiety issues, who else would come to my rescue but my dear, sweet A? 

The other day, coming from a work meeting, he brought home two packages for me. First, he handed me my most recent package from BeHappy Malaysia. I was already feeling giddy; I had been waiting for that for a couple of weeks. And then he hands me an unexpected surprise and it was huge! It would be my first Christmas gift of the season and it was an absolute thrill to receive it from him. Then too, he was so excited to see me open the gift that I only had a few seconds to take pictures before we both started ripping the glossy wrapper.

I closed my eyes and held my breath… and voila!

I absolutely love it! 🙂

This is the new Sylvanian Families Beechwood Hall or what Epoch Euro still calls the City House with Lights. Updated with new, fresher colors, a landing for the second floor and a reversible play area in the ground floor, this new home is a major improvement over the old Willow Hall and addresses many of the problems the old home was well known for. The room sizes remain small as the overall size of the house remains the same, but the addition of the landing and reversible play area adds up to a better play experience. Moreover, the bonus sets that come with this package make it more pocket friendly. Some of the items included are not even sold in the country as individual sets. A similar gift set was sold in the United States a while back under the Calico Critters brand and carries most of the bonus items, but not all.

I’m setting this house up for the Christmas diorama I would like to build in the living room. I have enough different playsets to personalize this house, but I fear I will not have enough time to paper the rooms or make additional carpets. Still, I can imagine how the house will look when I add the Christmas tree and Santa Bear. Also, I have a miniature creche to add the real spirit of the season to this holiday home.

If you want to see upclose the bonus sets that came with this purchase, here is a closer look at the sticker prominently displayed in front of the box.   

And just in case you’re still curious what precious finds I got from BeHappy at a great discount, here they are too:

Which reminds me of this: A forum friend posted a curious question on the Sylvanian Families forum, “How do people react to your Sylvanian collection?” and this is what I posted:

I’ve never really been embarrassed about my SF collections. Perhaps it’s because people already know me as a crazy Hello Kitty lady and have grown to accept me as such; one more “craziness” won’t change their perception of me.

I am lucky that like some of you here, my husband supports my collection and buys them for me without hesitation (but always within reason). As a collector of 80’s Japanese robots and Transformers toys, he possesses the mindset of a fellow toy collector. On occasion, he lets me play with his toys and I let him play with mine. It’s a playful marriage all in all, haha.

There are those who do not understand, and they probably never will. There are some relatives who question the sanity of this midlifer. There are also those relatives who think money should be put on other things, like an Hermes bag or Tiffany jewelry. These, they say, have real worth and can be put back in the market without depreciation. But when I think about the reasons why I collect SFs, ultimately, my collection is only as valuable as the happiness I derive from it.

I have a running tally of how much my husband and I have spent since September 2009 for SFs alone and it’s a daunting figure. I acquired so many in so little time and I am extremely grateful that we are blessed with circumstances that allow for these. And knowing how much of my husband’s hard work and sacrifice bought me all these, the only opinion I value these days is his. 🙂

Thank you, honey, for making all my Christmas wishes come true. Your love is my most precious gift and I could never ask for more.

Friends, Fun, & Love in One Weekend

14 Nov

Sorry I forgot to put up yesterday’s post. I am back home from a wonderful night spent at a fabulous hotel. It’s another anniversary weekend and I feel pampered and refreshed, ready to face the coming week with verve and zest.

I started my weekend chores really early to prepare for our short Parents’ Days Out. I kept a list so I didn’t forget anything. We needed to make a quick grocery trip to pick up some household staples (eggs, bread, honey, and straw for packing- done!). We also needed to pass by TriNoMa to get free tickets for a special screening of Harry Potter and the Deathly Hallows Part1 (done!). And most importantly, A and I promised to spend a few hours at the Komikon 2010 to support a good friend (done!).

I’ve never been to a Komicon (a comics convention, it is named after the way Filipinos spell comics in Tagalog, with a k, as in komiks) even though A is an avid graphics novel collector. We went on the invitation of a good friend who was launching his first comic book at the 6th Annual Philippine Komiks Convention. For a man educated strictly in the sciences (he is both a Pisay graduate and a UP College of Medicine alumnus), Doc Ernest has amazing creativity and artistry. His comic book, MEGA-WOMAN, is homage to one of Philippine entertainment’s best stars, Ms. Sharon Cuneta-Pangilinan, and inspired by our common love for the Megastar.

The artist and writer of MEGA-WOMAN

Front cover of Doc Ernest's comic book

 A and I spent a few hours there, marvelling at the talent and dedication of our local artists. Above is a picture of us with Doc Ernest and another old friend from Pisay, Theresa Ongchangc0-Diaz. The picture is blurry because we had it taken by someone else but I just had to put it in. (Just squint your eyes for a better view.)We were happy to get autographed copies and even happier knowing that we had shown support for our friend. And wouldn’t you know it—Doc Ernest drew me and some his friends in cameo roles in his comic book! Whee! Kittymama is now a comic book character (never mind that my line had me gushing and fawning over Mega-Woman, heehee). Thanks, Ernest! I loved the drawings and the story so I hope that Part 2 is coming very soon.  

Kittymama in cameo

I wish we could have stayed longer to look at all of the wonderful comics on sale, but the weekend was waiting for A and me. After saying goodbye to the kids and some last -minute packing, we were off to the hotel and got there in record time. The hotel was absolutely gorgeous; the employees at the Marriott Manila were very hospitable, courteous, and professional at all times. Check-in was a breeze. I loved our room and fell in love with the plush bed immediately that as soon as my head touched the luxurious sheets, I fell fast asleep. I woke up to find the sun had set hours ago and my stomach had started its angry grumbling. A was beside me, snoring lightly, and I waited for him to wake up. Then we went out and had a really big dinner, took in a movie (Unstoppable), and if the long afternoon nap was not enough proof that we are, indeed, old folks, fell back to sleep within minutes after reaching the room.

Kittymama in Hello Kitty fashion

Personalized service

Service is so personalized that as soon as you lift the phone to call room service, they know who you are and call you by name!  

Loved♥ this room!

I wish I could take this home with me!

And now it’s Sunday evening and the weekend is almost done. We’re back home, back to the kids, and ready to face the week’s coming challenges. It has been a great weekend, filled with friends and fun and love and rest. I wish I could have more days like these with A. Happy Anniversary again, my love.  (‿♥)

When It Rains, It Pours

30 Jul

They say all good things come to those who wait and I couldn’t agree with this more. By opting for a longer-term choice instead of giving in to my impulses and addictions, I got what I wanted and so much more. Thank you to the generous heart (you know who you are) who sacrificed his own needs over my crazy wants. I feel loved, really I do. 🙂

“The secret of patience is doing something else in the meanwhile”

Time to play! Woot! Woot!

Keeping Our Cool

28 Apr

I don’t know why we didn’t think of this before. It’s a brilliant idea – one that Alphonse came up himself  – to deal with the heat and reduce electric consumption at the same time. That boy is a smarty in disguise. 🙂

At lunchtime today, the kids and I turned off all the lights, fans, airconditioners and other electric appliances (refrigerators exempted) inside the house and headed outside to the shaded garage. We have an Intex easy-set family pool (eight feet in diameter, height of 30 inches, can accommodate a volume of 639 gallons) that’s been up since the start of this long summer. Mindful of the water shortage, we have kept the water level low at around eight inches. This makes changing it and re-using it for cleaning much easier.

The pool easily accommodates six regular-sized adults sitting up, so the kids and I sat down inside the pool and enjoyed this water for a few hours. Alex and I played Harry Potter UNO with plastic laminated cards;  we turned over a bucket and used that as our table. Alphonse poured water into different containers. When they got bored from sitting with their mama, Alphonse took off, bubbles in hand. Alex then got his guitar and played his repertoire of songs.

We had lunch outside, too, on our plastic lawn furniture. When we got hot, we went back inside the pool, poured water over our heads, and played UNO again. By the time the kids were ready to call it a day, the worst of the sun’s heat had already dissipated. We had saved a few hours of electricity and enjoyed each other’s company at the same time. Alphonse really loved the time with his brother, staying inside the pool only as long as Alex was in it. And Alex finally disengaged himself from his game consoles and handhelds, even if only for a while.

Me? I got a lot of kisses from Alphonse and even one, grudgingly, from the UNO loser, heehee.

Not a bad afternoon, really.