Tag Archives: autism awareness

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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Shackling Prejudice, Unleashing Love

25 Jan

Years ago, when Alphonse was ten, he saw a parked car at the side of the road during one of his neighborhood walks. Because he loved to ride cars (he still does) and the car looked exactly like ours- same make, same model, same color- he tried to get into that car.

The doors were locked and Alphonse, oblivious to his nanny’s attempts to pull him away, kept jiggling the handle to open the car’s back passenger door. Within seconds, however, a man came out of the front driver’s side and berated my son and his nanny loudly. When the nanny explained that Alphonse has autism and that he did not understand that that car was not ours, the man shouted at them and said, “Dapat itinatali sa leeg ang mga ganyan!” (Loose translation: “People like him should be put on a leash.”)

I am reminded of this by the recent incident at a Whole Food store in Milwaukee. (Go ahead and watch the video, before proceeding. I’ll wait. Just promise to come back, okay?) It is disconcerting to know that in this day and age, when autism awareness is at the forefront of the fight for recognition and acceptance, this kind of prejudice still exists and occurs. The thought of putting a leash on a human being because of a disability sickens me. Why do we treat our fellow human beings this way? And what’s next? Do we gag them as well? Do we take away their right to exist?

Just this morning, I read an open letter to the management of Gymboree here in the Philippines. It was written by the parents of a five-year-old girl with autism. It hurts to read that eighteen years after we started our own journey with autism, things like these still happen. I thought that we had paved the road well enough with our own sacrifices and tears that children like Patricia will never have to be treated with less respect than is owed them as a human beings.

I haven’t given up hope that one day soon, and hopefully in my lifetime, we can begin to really extend the arms of welcome and understanding to people whose differences set them apart from us. In the meantime, we keep fighting the good fight for our children.

We are all they have. We are their weapons against prejudice and hate. And with our love, they will overcome.

~0~

Update: Gymboree Philippines has come out with a reply here. While I sincerely respect the company’s prerogative to set their own rules, it doesn’t seem to make sense to make age as the sole determining factor to decide who gets to use which facilities. How about size? Or skills? A few months within the child’s 60th month (if she has had her birthday and they insist on sticking to their 60-month rule) is not likely to make a difference in the big picture of autism.

I think it’s time that they change their rules to accommodate the needs of children with disabilities. In the end, I pray that Gymboree understands that children like Patricia don’t need freebies or token gifts- what they need are the opportunities to play and socialize and just be kids.

What they need is compassion.

Light It Up Blue 2012

1 Apr

April 2 is World Autism Awareness Day and one of the initiatives that have marked this day is the three year-old Light It Up Blue Movement of Autism Speaks. With new cases of autism being diagnosed everyday and incidence rates now standing at 1 in 88 kids in the US, surely we’ve gone past beyond simple awareness. How many kids will it take for people to start realizing that this will not go away? That beyond feel-good movements and short-term PR projects, we must press our governments, our health officials, and our teachers to work hand-in-hand with families and come up with comprehensive action programs?

Today, we must start moving, There is no time to lose. Our kids are growing fast. Their numbers are rising even faster. Changing labels and diagnostic criteria will not change the reality that this growing segment of the population- and their families- will continue to require assistance, and if such were not possible in view of third world governments’ priorities, then at least some tangible guidance.

In this part of the world, we join the millions of those who love and live with individuals with autism. Our son  may not have his own voice, but he has ours.

We are Team Alphonse.

Boring is Good

1 Sep

I had a busy last two weeks, which was good because I got out of the house more frequently than I have of late. I’ve been feeling cooped up here at home after a cycle of nonstop ring-a-ring-o’-posies with the flu. The down side was that I got too busy to sit down and jot what’s been happening with me and the family. Between the chores still piled up here at home (when, oh, when will I ever finish?), the kids (and for all their size, they are still kids- big, messy ones at that), and the unexpected changes in all our schedules, squeezing in some computer time was next to impossible. You know when something happens and you instantly think, “Wait till till I post this in my blog”? Well, that happened more times than I can count and I never could follow through.

The good news is we’re all okay now. Things are often BORING here at home and I mean it in the best possible sense. After two weeks of whirlwind activities, including some days off in Singapore, boring is an absolutely welcome development for this family- no unexpected changes, no unpredictable shifts, no crazy tilts in our already rollercoaster lives. I am ready for some down time, baby!

I do have stories to tell you of things I’ve seen and done and places I’ve visited in the last two weeks. One of them, I hope, will become part of Alphonse’s new life soon- an absolute gem of a find in the middle of this crowded city, an oasis for children like him. I’m still working out the details, but I hope that Alphonse will be able to get out of the house more often from then on. Wish us luck, please! We’re going to need it.

In the meantime, I will be uploading new pictures and resizing them for use in the next few days’ posts. Thanks for staying tuned, my friends. Will be back again tomorrow!

~0~

My happiness thought of the day:

Happiness is…

a three year-old nephew who screams in delight at the sight of his beloved, albeit disabled, cousin.

“Oh my God! That’s Kuya Alphonse! That’s Kuya Alphonse! I can’t believe it!”

Joseph has not seen Kuya* Alphonse in months since Alphonse got sick. It was my decision to keep him away, mindful that Alphonse may accidentally hurt him; he is so small and delicate still. But he never fails to ask about Alphonse in phone calls, and whenever someone asks him who he loves, he always says “Kuya Alphonse” without hesitation. Their happy reunion last Monday happened at my dad’s 70th birthday dinner.

Love is contagious, but so are fear and prejudice. I am grateful that my brothers and sisters love Alphonse so much that they passed on this same love for Alphonse to their children. Joseph knows Kuya Alphonse is different. Kuya sometimes tramples him underfoot, accidentally. Kuya sometimes refuses to share his bubbles. But Joseph understands, even at a young age, and adores Alphonse without fear, without revulsion, without judgment.

“It is only with the heart that one can see rightly; what is essential is invisible to the eye.”~Antoine de Saint-Exupéry

Wish we could just all love one another this way.

*(Big Brother)

Want Prizes?

8 Nov

Today, I was looking at the entries to the Okasaneko Chronicles’ 3rd Blog Birthday Giveaways and I was very pleased to see the numbers growing. You can still join until November 14. The contest ends one second before midnight of the 15th, so any entry received until 11:59:59 pm of November 14 is still valid.

I noticed, however, that there have been some confusion on where to post and what to post, and since we’re all friends here, let’s just say I ♥ you all and forgive the little mistakes. If you took the time out to visit this blog, write a comment, and leave your well wishes on this blog, as long as you indicate that “I want to win in Okasaneko Chronicles’ 3rd blog Birthday Giveaway,” you’ve got one entry for the raffle drum.

To make things clearer, however, let me point out some more helpful tips for posting and re-posting.

  1. Comments must be left on the blog entry “Now 16, Forever Sweet.”  
  2. For FB postings, please make sure that your FB status post is viewable and please put the link in the comments box of  “Now 16, Forever Sweet.”
  3. To  blog about the contest, I ask that you link the Official Giveaway Rules and include the picture with our blog giveaways sponsors (see below). You can resize the picture if it’s too big.

I do have pictures to upload now so if you want any of of these prizes, then, join, join, JOIN!!! I hope these whet your appetite to win freebies!

One winner will receive this very helpful Autism Society Philippines Directory of Resources, which lists down all available schools, therapists, and other professionals, for children with autism. This comes with a bright neon green angel baller band, also courtesy of ASP.  (Note: Because this book will be of greatest use to those in the country, raffle of this prize is limited to local readers only.)

Two winners will win a set each of this lovely charm bracelet with enamel autism and puzzle charms, an enamel autism awareness pin, and a “I ♥ someone with autism” badge pin featuring Alphonse’s brother Alex as a cutie ten-month-old doing a kissy face. These are all courtesy of Alphonse (amd Alphonse’s mama!).

And to Sylvanian fans out there, or simply anyone who wants to see what Sylvanian Families are like,

Ban Kee Trading, exclusive distributor of Sylvanian Families in the Philippines, will be giving away these prizes to four lucky winners! Two will receive a box each of  the 25th Anniversary Limited Edition Baby Students and two will each receive a furniture set with a Limited Edition 25th Anniversary Forest Fairy key fob. Absolutely divine!

So, far, we have 12 prizes up for grabs! What are you waiting for? Join, join, JOIN!!!

Now 16, Forever Sweet

3 Nov

Today, Alphonse turns sixteen.

It never ceases to amaze me when I look at him, now almost grown up. He stands three inches taller than me, fits into men’s clothing, and sports a slightly disheveled moustache which matches the smattering of hair in his armpits. Everywhere I look, I no longer see a trace of the baby or the child he once was. All I see is a man.

The truth is, I miss my baby. I miss the sweetness of his breath in the morning. I miss the softness of his unblemished skin. I miss being able to carry  him in the crook of my arm to sing him to sleep.

 I miss the way he fits in the side of my body when he curls up in bed with me.

I miss his chubby cheeks and his round, heavy body. I miss the hibernating porkchop and his pouty lips.

I miss his childlike smile, the one that erases all my fears away. 

But even as I miss those mementoes of his childhood, I marvel at who he has become today. Almost a man, but not quite. Loud, quirky, opinionated, determined. Headstrong and bullish. Sweet and trusting. 

It has been a long journey from then to now. There were many days of pain and heartache, and of grief and despair, but for each one of those miserable days, our lives were blessed a millionfold by what we have learned living with and loving him. Alphonse has taught us patience and tolerance, forgiveness and acceptance, gratitude and surrender. Most of all, he has taught us how to love without hope or thought of reciprocity. We love him because we do, and not because of anything he does to make us love him. It’s as simple as that.

Happy birthday, our dear sweet child, our Alphonse.  Papa, Mama, and Kuya Alex love you so much.

~0~

While on the subject of birthday celebrations, this blog also turns a year older this month. Happy 3rd birthday to Okasaneko Chronicles!

In 2007, when I started blogging, I was lucky to get even just ten people a day to read my blog. Three years later, despite the lack of promotion (I’ve never really been very big at that) and the freedom to express myself, those numbers have multiplied exponentially. In this little corner of the Internet I call Kittymama’s home, I have made many friends. I have also become part of a larger community of people I would never have met were it not for this wonderful experience. Thank you to all those who have come, visited, read, lingered, commented, returned, or even just glanced at the pages of my life. I am humbled by your kindness and love.

The Okasaneko Chronicles’ 3rd Blog Birthday Giveaway starts today so please be sure to leave a comment in this blog post to join. You can read the mechanics here for the full details on the giveaway. Many, many thanks to all those who have helped make this giveaway a reality: Sanrio Gift Gate Philippines, Ban Kee Trading, Inc., BusinessWorld/HerWord.com, Autism Society Philippines, The Fairy Godmother, and Alphie (who is none other than Alphonse, the birthday boy who wishes to share his birthday blessings with his Mama).

 

To Stella, With Love

21 Oct

I found this in my comments box this morning when I logged in to check for messages. I thought Stella deserved a post of her own, so one hand less notwithstanding, I am posting a reply for her. (One easy thing about posts- one can always cut and paste, heehee. 🙂 )

Stella’s note reads:

hi, got to read your blog when i was surfing for materials on autism. my six year old daughter was diagnosed with ASD when she was four. although, now she talks and reads very well, even advance of her age in her prep class, she has some of the behaviors you have mentioned in this article — she does not want a pony tail hair, or any hair accessories, does not like going to a parlor for a hair cut, prefers soft and cotton clothes….

i would appreciate if you can help me how to join the autism Society of the Philippines. I am basically living in Surigao City, Mindanao, Phils.

stella

Kittymama’s reply:

Dear Stella,

Thank you for visiting my blog. One of the reasons I keep doing this is that it helps me reach other people in my advocacy for autism. If even once in a while, a reader searching for information on autism stumbles into my blog, picks up a few things and is made all the better for it, then all these would have been worth it.

I hope this answers your query on joining the ASP. I’ve long held the belief that “Autism is not a boat for one.” We all need a little helping hand along the way, be it someone to talk to or even someone to ask questions of.  The world can be an open, encouraging place for parents like us looking for answers- if we only learn to ask. I am certainly happy you did.   

 Autism Society Philippines has 37 chapters all over the Philippines. Using this map I found via google search, I’ve highlighted the cities with ASP chapters in green to give all of us an idea of where these can be found in relation to your home city, Surigao City, which is highlighted in yellow. 

Below are the contact information for the different Mindanao chapters of ASP as listed in this ASP page.

CAGAYAN DE ORO CITY
President: Ms. Angie R. Abellanosa
166 Villa de Oro Kauswagan
9000 Cagayan de Oro City
Tel No: (082) 3506288
Mobile No: 0921-5927742
Email: angie_abells@yahoo.com.ph
 
DAVAO CITY
President: Mr. Eric D. Dela Costa
13 Carnation Circle Ladislawa
Garden Village 8000 Davao City
Tel No: (082) 2278420
Fax No: (082) 2279609
Mobile No: 0917-9058739
Email: edc@alsonsproperties.com
Email: aspdavao@yahoo.com
Email: davaeno88@yahoo.com
 
GENERAL SANTOS CITY
Representative: Ms. Mira del Rosario
L5 B6 Pioneer Village, Lagao
9500 General Santos City
Tel No: (Res) (083) 553-1280

Tel No: (Off) (083) 302-6745
Fax No: (083) 380-7297
Mobile No: 0915-5598791
Email: msdrqa@mozcom.com

ILIGAN CITY
President: Mr. Miguel Y. Lasala III
III Cuadro Ocho, Inc.
Que Avenue Extension
9200 Iligan City
Telefax No: (063) 492-3873
Mobile No: 0917-7161254
Email: myl111_888@yahoo.com.ph

ZAMBOANGA CITY
President: Ms. Angeli Parmanand
315 Sta. Maria St.
7000 Zamboanga City
Tel No: (062) 993-1617
Mobile No: 0928-9633670
Email: angelieparmanand@yahoo.com

Hope these help you, Stella. I wish you and your daughter all the best,

♥Kittymama