Tag Archives: Parenting

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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Wake-Up Call

20 Oct

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

7 Sep

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

23 Mar

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

28 Feb

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

17 Feb

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.

Balloon Love

23 Sep

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 agoballoon love and son, 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. ♥