I wanted to postpone putting up this post until I could get a decent shot of Alphonse applying for the benefits due to him courtesy of the amended Magna Carta for Disabled Persons (RA 9442 amending RA 7277). I’ve been thinking about it for forever, setting the shot in my head, but you all know the rest of the story.
It’s been more than year since Alphonse received his National Council on Disability Affairs- Quezon City ID (NCDA-QC) and the booklet that comes with it for purchases of basic goods and medicine.While we have been able to use it sometimes, more often than not, this card carried no real weight in many establishments for services he needed. For example, when Alphonse was confined at a private hospital in February of this year, we inquired on the application of the discounts and were told that the hospital did not honor disability benefits.
Still, I feel it would be a disservice to many if I put off the news any longer, considering how many people do not know that these things even exist for our children. As a country that prides itself in acceptance and compassion for the differently-abled, we are sorely lacking in services for these sectors of our society. Public schools that should, by law, cater to special needs children lack funding for appropriate classrooms, teachers, and materials for teaching. There is no nationally mandated early intervention program for children with special needs, and beyond the middle school years, we have little or no programs for adolescents and adults to transition them from school to workplace. I’ve said this over and over again and I am beginning to sound like a broken record: autism awareness is an important issue but the advocacy must be greater than this. We must work for real, tangible help that can be felt across the spectrum of our children’s disabilities rather than work solely on public relations and feel-good movements.
When we applied for the ID and the purchase booklet in our city government office last year on behalf of our son, we received them within the day. That was the good news. The bad news was the only places we could count on to honor them are the SM Malls’ supermarket chains and their mall-based drugstores, Watson’s. Thirty pesos saved here and there may be little to some, but to many parents who shoulder the entire expense of their children’s needs, it adds up in the long run. I only wish more companies would follow suit.
Then too, a few days ago, my friend M told me that McDonald’s honors her son’s ID and gives them a discount for his food. One of these days, when Alphonse is up to it, perhaps we might just give it a try and check it out for ourselves. Would Jollibee be as accommodating too?
Just recently, we got wind of more good news via Autism Society Philippines.
- The establishments of more chapter organizations of the ASP (50 at last count) herald an unprecedented rise in awareness and autism activism within the country.
- Learning software from Vizzle Technology has found its way to two public schools in Manila that offer special education to 400 high needs children; this is a praiseworthy initiative from Globe Communications, the Department of Education and ASP which would benefit the least economically able of our children.
- Perhaps most significant of all the news is that Mercury Drug Corporation, the largest drug store chain in the country, will finally honor disability discounts effective May 1 of this year. Our thanks to our advocates in government for this: Cong. Arturo Robles, the House of Representatives Commission on Social Services, and Cong. Walden Bello of AKBAYAN.Finally, we see our government working for us. Hats off to all the advocates of the disability sector- without your voices, our children would not be heard.
These are truly welcome developments for families with autism and other disabilities. The news about Mercury Drug pleased me most, of course. I even danced a small jig when I read about that one. Congratulations to ASP and to all of us!
Allow me to quibble, however, on something that bothered me as I read ASP’s post. I am not ungrateful but I do have to take exception with the way ASP says “Autism education issues are finally resolved” or “Autism health issues are finally realized,” for these imply a certain end and finality to all these specific disability issues. Perhaps a better way would be to say that autism issues are finally getting recognized, that we are finally getting heard.
The truth is we are nowhere near the finish line when it comes to disability issues. Even as we resolve old ones, new ones come along, brought about by our children’s growth, their different needs at different times in their lives, the different levels of functionality in the spectrum, and even changes in the state of the world. While I laud ASP for their victories and hard work, I must exhort them NOW to move with greater speed, with a stronger impetus, and with an even bigger vision for our children. Only if we seize the momentum today and take the little steps that make these big changes can there be a real future for all our children.
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.
- Comments must be left on the blog entry “Now 16, Forever Sweet.”
- 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.”
- 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!!!
Originally published in Herword.com on November 2, 2010
I write this in honor of a person with autism, Alphonse Cuaycong, who is sixteen this November.
Every year, on the third week of January, autism awareness comes to forefront in the nation’s priorities as we celebrate Autism Consciousness Week. World Autism Awareness Day, celebrated on April 2 of each year in perpetuity, furthers this cause by linking nations in efforts to bring awareness to a condition that breaches global barriers, race, gender, religion, and social status.
Autism awareness in the country has grown by leaps and bounds, thanks largely to the untiring and continuing hard work of Autism Society Philippines. They knock on doors previously closed to all our children. They create buzz for activities meant to highlight our children’s contributions to society. They work on information and education and early diagnosis. They do all that and more, motivated solely by altruistic concerns and a genuine love for our children.
And yet, despite their unending efforts to get heard, be seen, be known, be taken seriously, there remains a real disparity between awareness and action, between theoretical ideas and words and what exists out there in the real world. Let me state for the record that I hold the society in highest esteem and I do not mean to belittle their successes. The truth is, without Autism Society Philippines, the agenda of autism in the country would have remained in the back burners forever. Autism would just be another dirty little secret, hidden behind closed doors, locked away in dark attics, whispered but never seriously discussed. It is to their credit that autism has broken down some walls in our society — some, but not all. And this is where the gap begins.
With the uncertain prospects of the economic downturn, many countries with state- or nationally-funded programs for autism and other disabilities have been drastically cutting back on costs, shortening the lives of essential programs, or discontinuing them altogether. I have seen and heard how parents continue to fight for their children’s rights and while I am deeply sympathetic to their plight, I do not fully comprehend the depth of their loss or their anguish. In my country, we all live with the certainty that integral programs for the education of children with disabilities will long remain a pipe dream
We do not lack laws that protect and promote the rights of our children; on the contrary, we have some of the best ones. There’s RA 232, called the Education Act of 1982 which was enacted on September 11, 1982. The law mandates that “the State shall promote the right of every individual to relevant quality education, regardless of sex, age, creed, socio-economic status, physical and mental conditions, racial or ethnic origin, political or other affiliation. The State shall therefore promote and maintain equality of access to education as well as the enjoyment of the benefits of education by all its citizens.”
Even without it, however, our Constitution and Bill of Rights guarantee this very same right, that “the State shall protect and promote the rights of all citizens to quality education at all levels and shall take appropriate steps to make such education accessible to all” and that “the State shall provide adult citizens, the disabled, the out-of-school-youth with training in civics, vocational efficiency and other skills.” Furthermore, the Constitution states that “the State shall adopt an integrated and comprehensive approach to health development which shall endeavor to make essential goods, health and other social services available to all people at affordable costs. There shall be priority for the needs of the underprivileged sick, elderly, disabled, women and children.”
We also have the Magna Carta for Disabled Persons or RA 7277, signed into law on March 24, 1992 by then President Corazon Aquino. In itself, it is a beautiful law, one that sought to provide persons with disabilities the same rights enjoyed by their able counterparts — education, employment, health and social services. Making it even more significant, this was later amended by RA 9442 in April of 2007, and by virtue of this amendment, provisions of the original law were expanded to include fully realizable economic privileges such as discount for food and medicines, health care, transportation and education. These are meant to provide economic respite to many parents who support their children with disabilities without any state or local government funding.
But the reality is this: public education in the Philippines, while well-meaning and well-intentioned, is a mendicant policy, a victim of poor prioritization in a budget inflated with pork barrel and ridden with corruption. There are not enough classrooms for all the children. There are not enough books, and if there were, their quality is poor. There are not enough good teachers and certainly not enough teacher training to ensure that someone like comedian Melissa Cantiveros of PBB fame, a teacher in her home town, is proficient in the subject she has been chosen to teach (in her case, English).
If public education as a governmental policy is already ranked low in the state’s priorities, then consider how low special education is regarded in the very same totem pole. Most local governments have little or no funding for special programs. The laws are there, alright, but the money isn’t. There are no early intervention classrooms for children diagnosed early, except a few in private schools or institutions. Public special education teachers in the country work against lack of money for materials, lack of a good classrooms to integrate smooth working spaces for the children, and lack of manpower and help. If these classes survive at all, it is because of the guts and determination of these individuals — these heroes — who have put a stake in our children’s education and wellbeing.
Private special education, on the other hand, costs an arm and a leg and is usually out of the reach of the common people. The quality of education and programs offered also vastly differ from one school to another, from one program to another. Some are good, some are bad; all need lots of money. Moreover, private special schools, as our own experience has taught us, may turn your child away, something that we once thought was impossible in the setting of special education. Low-functioning kids are also at a disadvantage as private programs for adolescents favor those with higher-functioning skills.
Money, or the lack of it, remains only part of the problem. Political will is another. The Magna Carta for Disabled Persons provides this sector with financial help in the form of discounts, and even with the law, sometimes, these discounts are difficult to obtain (especially when it comes to medicines). The Implementing Rules and Regulations took their sweet time in coming, and even with the touted reforms in the way disability is viewed and treated in the country, this has yet to be fully translated into real life. The good news is that spurred by the National Council on Disability Affairs, many local governments have taken their own initiatives in making this law bear fruit. In our city, Alphonse has received his purchase booklet for basic goods and services, along with his National Council on Disability Affairs identification card.
And there are still dreams that will need more time to come to complete fruition: a year after the first sensory-friendly movie in September, what we have still are token showings on special occasions, and not the kind of inclusive, sensory-friendly and regular screenings we always dreamt of.
Still, I remain positive and hopeful that one day soon, children like Alphonse will finally get a fair shake in this society. Fourteen and a half years after diagnosis, my son has yet to fully experience the benefits of the laws set to safeguard his rights. Then again, perhaps the change may not even come within his time. Yet as long as we start to take the little steps to correcting these, as long as we remain vigilant and persistent, as long as we continue to fight for the rights of the more than half a million Filipinos with autism, hand in hand with Autism Society Philippines, perhaps that day may not be too long in coming.
I have great hope.
As promised, here are the mechanics for the3rd OC Blog Birthday Giveaway.
Contest Duration: This contest will start on November 3, 2010 12:00:00 midnight and end on November 14, 2010, 11:59:59 pm.
- The raffle for Hello Kitty, Sylvanian Families, and Alphie’s Autism Awareness gift packs items is open to ALL readers, both local and international, of this blog.
- Due to the nature of the other gift items, the raffle for these prizes will be open ONLY to readers with local addresses.
How to Enter:
There are three ways to join the contest:
- Leave a comment in tomorrow’s blog post with your name and e-mail address. For posters outside the Philippines, please indicate your country of origin in the comments box. Start your comment with “I want to win in Okasaneko Chronicles 3rd Blog Birthday Giveaway.” Only one comment per e-mail entry is allowed. Repeated postings will not earn additional raffle entries.
- Blog about this contest and link your post to the URL of this page. Please include the Blog Giveaway photo featuring our sponsors which will appear in tomorrow’s post. Leave a comment here with a link to your post.
- Share the giveaway contest with your friends in Facebook. Don’t forget to share the link of this post in your status message. Leave a comment here with the URL of your message so I can verify. Make sure the post is set to public so I can view it.
Each of these methods earns one raffle entry; do all three and get three raffle entries to increase your chances of winning.
- The raffle will be held in two parts- one for local readers and another for both local and international readers. You may win more than once so it pays to increase your chances of winning.
- Winners will be determined using a raffle drum. The drawing of prizes will be held on November 15, 2010.
Winner Notification: The names of winners will be announced in a separate post within three days of the draw. An e-mail message will also be sent to the winners to notify them.
Claiming Your Prize: Please respond to the e-mail notification right away so the prize can be shipped to you promptly. Shipping of prizes will be shouldered by Okasaneko Chronicles.
As of this writing, I have 12 confirmed gift packs for the raffle but who knows? I may be able to add some more (crossing my fingers)! So hurry and join; you have exactly eleven days to enjoy this contest. GOOD LUCK!
As November approaches, Alphonse senses something special is coming up and acts giddy and excited. It doesn’t hurt that another long break is overdue, what with the All Saints’ Day/All Souls’ Day holidays coinciding with most schools’ semestral break. Despite Alphonse’s lack of knowledge and concern about dates, he gets a lot of cues from the people around him and instinctively anticipates the coming days.
I can’t help but feel giddy as well. The OC (short for Okasaneko Chronicles, but funny how it simply dawned on me now that another form of OC is perfectly apt for me- obssessive compulsive, heehee) 3rd Blog Birthday Giveaways will be starting on November 3 and all the people I’ve asked for support has responded very favorably. Even HerWord.com, BusinessWorld’s e-zine for women, is sending a gift for giveaway! Yippee! The mechanics will be up very soon so please watch out this week for more news on the giveaway.
To get Alphonse prepped for his birthday road trip, we started him on short trips again. His behavior looks very promising. He has been very well behaved on our short trips and save for some minor shouting (he does love his verbal stims), there have been no major problems with grabbing or running away. Two weeks ago, at the grocery store, Alphonse wanted to ride the shopping cart the way he used to when he was a small child. I can’t help but smile when I remember how he took off his size 8 shoes and tried to lift one leg to put inside the large shopping cart. He’s almost five feet five inches now so the sight of him inside one can’t be considered cute anymore. Good thing he’s very pliable these days and we were able to convince him to walk with us instead.
Yesterday was another holiday because of the local barangay elections. Taking advantage of another free day, we decided to start Alphonse’s day with a visit to Granny Flower’s ossuary (Granny Flower is A’s mom).
Then it was off to my Mom and Dad’s house for a visit. We didn’t stay too long, though. We wanted to give him an hour or two at the mall before it was overrun with people. We also wanted to tire him out by walking the stretch of the SM North EDSA Sky Garden’s 400-meter covered walk way.
Alphonse was met with a lot of curious stares as his dad and big brother held his hands while walking. He didn’t seem to mind the gawking; in fact, he had a ready smile for everyone he crossed paths with.
He fell in love with this overgrown pumpkin decoration and sat down and fiddled with it before we could entice him to walk again. He even laid down a few seconds on the grass right beside it.
But we made sure to keep our promise of afternoon merienda (snack). Food is always a highlight of any trip for him and he loves Ineng’s succulent pork barbecue on a stick. He had one while sitting, another one while walking back to the car, and a third one inside the car. When we got home, he ate two more! This boy can definitely eat!
It doesn’t take much to make him happy, as you can see. We didn’t even have to spend for anything other than food. At yet, at the end of the day, you can tell by his smiles and kisses that he absolutely loves these mini-dates. Here’s crossing our fingers he’ll love our birthday surprise for him!
Alphonse will turn 16 in a little less than two weeks. Birthdays are fun but it’s always been difficult finding presents for him. Unlike your typical teenager, Alphonse wants little and needs so little to make him happy that often, we end up with such unimaginative presents of … you guessed right… underwear, shoes, and clothes. We can’t ask him what he wants when his default answer is “yes” to everything (when he says “No” you know he means it, whereas “Yes” can mean either) and Alex, his wily older brother, usually finds a way to twist this to his advantage.
Mama: Alphonse, do you want a new shirt?
Alphonse: (nods) Yes
Mama: Do you want new Crocs?
Alphonse: (nods) Yes
Alex: Wait, Mama, it’s my turn. Alphonse, do you want a new PS3?
Alphonse: (nods) Yes
Alex: See, Mama, you really have to get the PS3 for Alphonse. He really, really, really wants it! Please? Let’s buy the PS3 today!
(Nice try, son!)
Finding gifts Alphonse will genuinely love is always a challenge. These days, he’s still drawn to colorful preschool toys ; he actually sneaks off with his little three-year-old cousin’s toys every now and then. He still loves Disney DVDs despite our attempts to introduce him to other movies. And he is still absolutely, passionately crazy over bubbles. Running out of bubble solutions or bubble bottles will likely provoke a prolonged crying spell. We realize however that we can’t exactly keep encouraging him with these. While they remain part of his life, we have to keep looking at things and activities most neurotypical teenagers enjoy at that particular age. Unfortunately, that is easier said than done. Nothing seems to pop out as remotely interesting to him as the things he is already used to.
So we racked our brains and discussed countless ideas, without ever coming to a united position on our special gift for Alphonse’s 16th birthday. But you know how the answers to prayers come when one least expects it? Just a few weeks ago, we had a lightbulb moment. When Alphonse popped open one of the large covered pails of water we had and dove right in- head, shoulders, body, feet and all- we knew at once what we were getting him this year.
Just a brief backgrounder: Alphonse loves water but not the kind you swim in. He loves humongous basins and shallow pools and garden hoses and sprinklers of all kinds but would not venture into any body of water higher than his knees. This past summer, on a family trip, we went to a hot springs resort and were suprised when, for the first time ever, he decided to step into the pool and submerge himself neck deep. Not only that, he half-walked, half-paddled the entire length of the small pool. That he decided to stay submerged for almost a whole day told us that he finally found the courage to enjoy being in the water. Unfortunately, when night came, he wanted to go home and sleep in his own bed, though we had already paid for accommodations for the night. We tried to coax him to sleep but he cried loudly and refused to be appeased. We made the long drive back and once home, he promptly fell asleep. With that experience in mind, we promised him only day trips for now.
And that is what he is getting for his birthday- a day visit for a swimming party at the same resort. We’ve already made reservations. I only have to firm up the plans for food and extra amenities, get the swimsuits and swimming gear ready, get extra decorations, and we are ready to go!
While we’re on the topic of birthdays, next month, Okasaneko Chronicles on WordPress turns three years old. To celebrate my blog’s third birthday and to thank all those who have supported my blog with their visits and comments, I will be hosting my first ever giveaway. Wheee! Who can resist giveaways?
For now, I have decided on giving away three different sets of gifts which reflect each of the different passions I write about in my blog- autism advocacy, Sanrio and Hello Kitty, and Sylvanian families. Yesterday, I received an e-mail confirmation from Ms. Isabel Lopez, Marketing Manager of Sanrio Gift Gate Philippines, of their very kind sponsorship of the Sanrio gift pack. I was amazed that within an hour of sending my e-mail request, Ms. Lopez replied with a positive confirmation. I will wait for further instructions from her, but already, I am beside myself with joy.
Autism Society Philippines, through the kindness of ASP Secretary Tiffany Tan, will also donate two items for the autism advocacy gift package. I won’t reveal yet what’s inside this gift pack but let me tell you that some of the gifts will come from Alphonse and myself.
I am still waiting for Ban Kee’s Mr. Joseph de Leon’s reply to my request. I am hopeful that with these two generous sponsors already committed to the giveaway, they will follow suit. I will keep you guys updated on this.
The “I Am Three” Blog Giveaway will be launched very soon so please come back to this blog to get more details. As soon as the gift packs are all ready, I will post pictures and instructions on how to join. With two birthdays coming in November, it’s going to be a party!
P.S. Ban Kee said YES!!! It’s three for three!