Autism and Amazing Self-Expression

This article appeared on 10 March 2014 in the print and on-line versions of Manila Bulletin's "Angels Talk", edited by Dang U. Koe, ASP Chair Emeritus.

The Autism Society Philippines was one with the nation in celebrating the National Arts Month last February. ASP partnered with NCCA, Metrobank Foundation, MADE and SM Supermalls to mount "The Art of Healing," a unique art therapy workshop given exclusively to ASP members at the SM Aura. The experience brought to the fore how art is a powerful force of self-exploration and healing for many young adults on the spectrum.

Self-expression through art is the apparent refuge of many whose communication is limited by autism. And for some, what they lack in social skills, they compensate for with a “great eye” and a steady hand. Artists like JA Tan, Gabriel Atienza and Tomas Perez-Rubio have been lauded for their unique perspective and enviable dedication to their craft.

ASP National Secretary Mona Magno-Veluz returns as this week's Angel Talker to introduce us to an up and coming artist on the spectrum and his gift of perspective -- Lance “Tikoy” Basilio.

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Lance Basilio, for the most part, is your typical 11-year old boy. Aloof and handsome, his long hair tied in a ponytail hints to non-conformist tendencies. This young man with autism has long been fascinated by cityscapes and spent many an hour drawing imaginary cities on pen and paper, since he was four years old. Without referring to the original, he can recreate a drawing he did a year back so well that you would think you are looking at a photocopy. Gifted with muscle memory, Tikoy can make replicas down to the stroke imperfections.

Lance Basilio and his mom Mimi

So exemplary is his passion and artistry that Lance was highlighted by the Museo Pambata as one of their featured artists. “Tikoy’s Gift of Perspective” ran from February 16 to 22, 2014; and attracted many visitors from the business and art communities. The exhibit was opened by socialite and art enthusiast, Tessa Prieto-Valdes. [Erratum: Due to popular demand, Tikoy's exhibit has been extended to March 15.]

Mimi Basilio, Lance’s mom, feels that the ability to recreate on paper the fascinating places his imagination takes him is what allowed Tikoy to better express himself. And this outlet made a difference in his academic work. From being in a special program in Bridges Foundation, he successfully transitioned to the mainstream of Maria Montessori in Pasay.

Without any formal training or strong artistic influences, Tikoy never felt his drawings were special. It took the prodding of his mother, an interior lighting designer, and his godmother Shoko Matsumoto, the Cultural Center of the Philippines resident lighting director to persuade him to mount a solo exhibit. In the end, Tikoy became convinced and worked feverishly to create the pieces that were displayed in his exhibit.

Aside from being an artistic endeavor, the exhibit also opened doors for Tikoy’s talent to translate to a future livelihood. Mimi Basilio transformed some of Tikoy’s sketches into elegant lamps. Some designs were also made into t-shirts which were sold to benefit the Museo Pambata. More interesting still, a Japanese fashion house expressed their desire to manufacture Tikoy’s art into fabric prints. It is clear that Tikoy’s art has a commercial appeal he can leverage on in the years to come.

“Am I a celebrity?” Tikoy innocently asked his mom, when an exhibit guest asked for his autograph. While Tikoy is not yet a household name, the future is looking very bright for this talented young man on the spectrum.

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The United Nations declared April 2 as the World Autism Awareness Day. Advocate organizations like the Autism Society Philippines will commemorate the day with various events and activities. Get the latest updates on our Facebook page ( http://www.facebook.com/autismsocietyphilippines) and join us!

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Posted in: art,feature,pers

Autism in ASEAN: Unity in Diversity

by Teacher Ces Sicam, Vice President, Autism Society Philippines

Cecile Sicam with foreign officers

The 2nd AAN Congress in Brunei in April 2013 was an eye-opening experience for me. I learned about the status and activities of each country as each delegation gave a report during the formal meetings. But it was during meal times, breaks and field trips that we had the opportunity to share stories in more informal and personal level. Through these interactions I realized how unique each country’s situation is but that we are all bound by the same challenges autism brings.

Our host, SMARTER Brunei, led by its tireless President Malai Hj Abdullah bin Hj Malai Othman, is a center-based family support organization. They have 3 centers exclusively for Individuals with Autism (IWAs) – one for early intervention, another for IWAs aged 6-up and the Brunei Autism Center for Adults (BACA) for occupational training. Almost all of the staff of these centers are Filipinos – from their teachers, therapists, even to their drivers. Their centers are practically tuition-free as Mr. Malai takes care of raising funds to sustain their operations. In 2001 he started bringing the cause of autism to the consciousness of Brunei, almost single handedly, by running a marathon across the country. He eventually got the attention and support of the royal family. And through the years he has been holding musical shows, fun runs and other big projects to sustain awareness and support for their programs. His advice: show you have a good product and support will come. They are encouraging families to put up businesses that their children can work in.

Thailand fielded the biggest delegation to the conference – all 115 of them, including no less than their Secretary of Education. The Association of Parents of Thai Persons with Autism (AU-Thai) is a recognized public organization since 1995 and, under the leadership of Mr. Chusak Janthayanond, has grown to more than 50 network-organizations in as many provinces. It is interesting to note that the incident rate of autism in Thailand is approximately 2-6 per 1,000 people – much lower than the incident rate in the US which we have applied to the Philippine population. It is estimated that there are more than 200,000 individuals with autism in Thailand (population 69.52 million). Autism awareness and support may perhaps been boosted by the fact that the King had a grandson who was known to have autism. (Unfortunately, he died in the tsunami of 2006.) Because of the support of their monarchy and government, Thailand can boast of comprehensive programs for IWAs, including Thai Elephant-assisted therapy. Thailand’s monarchy not only shouldered the expenses the AU-Thai delegation but also paid for the airfare of delegates from Myanmar, Cambodia and Laos. This is early evidence of intra-regional support and cooperation. Very heartwarming.

Malaysia also has a strong organization for autism. The National Autism Society Malaysia (NASOM) established their One-Stop Center for Autism with the support of private business groups such as the Kiwanis. In 2005 NASOM started, managed and financed a pilot programme to integrate children into mainstream schools. Because of the progress shown by students, the model was adopted by the Ministry of Education. They even have residential facilities/group homes for adults.

Indonesia was represented by Dyah Puspitah A. Abdoellah, co-founder and Secretary of the Indonesian Autism Foundation (Yayasan Autisma Indonesia/YAI), a psychologist and mother of a 22 year-old IWA. Dyah also runs Mandiga, an educational center for IWAs. YAI was founded by a group of parents and medical professionals and currently has about 1500 members. Indonesia is the most spread-out and populous country in the ASEAN (their population is about 238 million) and establishing strong links with the families and centers in the different parts of the country has been challenging. Like us, they also dream of establishing an “autism center” that can function as a diagnostic, registration, information, therapy and education center.

The Association for Autism (AfA) of Laos, was represented by its Vice President Thongkham Vongsay who is married to Michael Shultze, a German national, an ADB consultant on SMEs. He recounts that they did not have specialized medical personnel to check and diagnose children with developmental disabilities in Laos. No experts in special education are trained to deal with the disorder and help those persons to live a joyful and meaningful life, to support their families in order to integrate their members with special needs. Autism is virtually unknown in Laos. They had to go to Thailand to get confirmation about his son’s condition. Together with other parents, they put up the Vientiane Autism Center – the only educational institution for IWAs in Laos. Right now they are advocating for recognition and inclusion of autism as a disability in order to get government support.

Cambodia was represented by a very demure grandmother who not only heads the Parents Association for Children with Intellectual Disabilities (PACHID) but also runs a day care center with 20 children with intellectual disabilities in Phnom Penh. Ms. Svay Simorn could not speak English and was accompanied by one of their members, a father, an engineer who works for the government, who translated for her. As in Laos, there are no other institutions for persons with autism and PACHID is advocating for access to education and more support for their center.

One of the youngest members of the AAN is the Myanmar Autism Association (MAA). Just like Laos and Cambodia, the MAA is campaigning for more public awareness and understanding of autism, training of parents and teachers. I could not help but think of parellisms with our situation.

The Hanoi Club for Families of Children with Autism is a parent support group in Vietnam which is working for recognition. Its representative Ms. Hoang Ngoc Bich (pronounced “Bik”) works as a trainor/facilitator in several multinational companies. But she also experienced being her son’s teacher/therapist/mother as there were no programs that were available for her son. Now her son is a teenager studying in a mainstream school.

Considering that ASP was born in 1989, we’re one of, if not the oldest parent support organization for families of PWAs in South East Asia. In some areas, we have come a long way in raising awareness and support for autism. But we still lag behind in terms of providing training and services for adult IWAs.

Meeting the warm bodies and the faces of autism in the ASEAN countries has definitely been enriching. Hearing parents from other countries echo the same problems we face e.g. limited access to appropriate diagnosis and intervention, adult services and accommodations; data gathering, monitoring; organizational sustainability, funding/public support, and public understanding gave me the sense that “we are not alone” - the affinity we get from attending family support group meetings – only on an organizational level. Hearing what others are doing/have done to overcome these challenges is inspiring and reenergizing – tuloy ang laban!

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Posted in: international,intl,leaders,pers

Harping on Christian’s music

Christian performs with Prof. Lourdes Gregorio at the UST Christmas Gala in 2010.

By: Dang U. Koe, ASP Chair Emeritus

For almost 25 years now, Autism Society Philippines has showcased the various talents of persons with autism (PWA), including those who are musically inclined through its many events nationwide. Many of them are singers, pianists, guitarists and even drummers. But once in a while, we meet PWAs who play musical instruments that are rarely mastered even by most musicians who are not on the spectrum. Filipino child prodigy Tumtum Mendoza on the marimba, is one. And now, we have Christian Cordero Caragayan on the harp. Angels Talk collaborated this week with Maribu Caragayan, the mother of our harpist with autism, who is also a labor arbiter at the National Labor Relations Commission.

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At two and a half years old, Christian already showed great interest in music, ranging from classical to contemporary. The toddler was so fascinated with musical records (33s & 45s) that he could pick out a particular one that he liked from a stack of records after his mother would hum the tune to him.

“I am lucky that Christian’s talent in music manifested itself in his early years. We just developed it,” according to mom Maribu.

The family first enrolled Christian at the Yamaha School of Music where he learned to play the electronic keyboard. He has also been taking lessons from professional accordionist Sam Lombardo since 2004, after his very supportive maternal grandmother bought a second-hand accordion for him. But it is the harp that Christian has learned to embrace dearly.

It was his grandmother’s dream to have a harp in her house. At age 12, Christian took harp lessons at the Philippine Philharmonic Orchestra Music School of the Cultural Center of the Philippines. Soon enough, he was already playing beautiful harp music to his Lola in her house.

Aside from his loving grandmother, Christian has the full support of his family that includes his parents, younger siblings Christopher and Catherine, aunt Lody who accompanies him to his music lessons when his parents are at work, and Yaya Frina who has been taking care of him since he was three months old.

“I was able to cope (raising a child with autism) because my family was all supporting me, emotionally and financially,” Maribu says.
Christian was also fortunate to complete his elementary and secondary education in a school that integrates special needs students in its regular classes. His school, The Community of Learners, gave Christian opportunities to display his musical talents, including playing the harp during his high school graduation ceremony at the Kalayaan Hall of Club Filipino.

Since then, Christian has participated in a number of summer workshops and student recitals of the PPO Music School. He also took part in various activities at the Cultural Center of the Philippines (CCP). Among these are the “Arts Across the Borders” of the International Visitors Program Alumni Foundation, Inc. in cooperation with the embassy of the United States of America; CCP live auction for the painting exhibit of Raphael D.L. Gregorio; and the launch of a CCP and Net 25 TV program on world-class Filipino artists. He has likewise performed at the “Serenata” of the Parish Church of Santuario del Sto. Cristo in San Juan. Christian’s talent has also been featured at GMA 7’s “Extra Extra” and ABS-CBN’s “Magandang Umaga Pilipinas.”

Later on, Christian was accepted at the Music Extension Division Program of the University of Santo Tomas’ Conservatory of Music. He was blessed to have Professor Lourdes de Leon-Gregorio as her mentor throughout the years, from CCP to UST. This partnership was highlighted with a harp duet during the 8th UST Christmas Concert Gala 2010 at the UST Chapel.

“I underwent the emotional struggle of realizing that my child has autism. I even sought professional help where I learned that it is not the end of the world to have a special child.” Last June 26, as Maribu watched her son during his recital at UST’s Museum of Arts and Sciences, no one could be prouder of what Christian has achieved, not just with his harp.

*****

ASP’s seminar on July 28 features one of the country’s leading developmental pediatricians, Dr Alexis Reyes, who will talk on “All You Need to Know about Autism” and expound on the concept of “The Medical Home for Persons with Autism.” Venue is at the Philippine Children’s Medical Center in Quezon City. Meanwhile, ASP’s monthly family support group meeting on July 20, will be facilitated by ASP national treasurer Evelyn Go. For details, follow ASP on Facebook, Twitter and blogspot.

This article appeared in print and online by Manila Bulletin on 15 July 2013.

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Posted in: angels-talk,pers

Opening doors to collegiate life

As early as last year, Mrs. Brenda Aihara has been searching for the school suitable for her daugter, Erina, who just graduated from high school. Erina passed her college entrance exams with flying colors in some prestigious universities in Metro Manila, even landing at top 12 in the overall ranking. However, being a person with autism, she has difficulty integrating herself to new environments. She has yet to master social skills, in spite of years of intensive therapy. In her search, Mrs. Aihara learned that Olivarez College is offering a new course in Library Science -- perfect for Erina who enjoys the solitude of reading.

To prepare Erina, a special therapy program was designed for her during summer to gradually psyche her up for college life. She was taught how to commute from her house to Olivarez College even if her mother regularly drives her to school, social stories of what to expect in school was retold to her several times and an actual familiarization tour of her classrooms were done to orient her of her routine before the school opened for classes.

Mrs. Aihara also took an extra effort to make Erina's college life more meaningful by launching an autism awareness campaign in partnership with Autism Society Metro South Chapter of which she is a member, and Olivarez College headed by Dr. Elaine Grace Bognot, the school's physician.

(L-R) Ms. Charisma Leona Evangelio, Mrs. Teresita Abuan (Head, College of Education),
Dr. Elmer de Leon (AVP, Academics and Services), Mrs. Brenda Aihara, Mr. Hiro Aihara,
Mrs. Gina Bermudo, Mrs. Ditas Granada and Mrs. Imee Alviso

Last July 4, the Olivarez College auditorium was full of students, teachers, nuns and medical professionals eager to learn about autism. The Autism Society Metro South Chapter headed by Mrs. Imee Alviso and Mrs. Ditas Granada were present to show their support. Mrs. Gina Bermudo, ASP Board of Trustee, was invited to be the resource speaker. As always, Mrs. Bermudo gave a very powerful presentation where she conducted the seminar with much energy and credibility. After the very informative seminar, an immediate second seminar was requested to which Mrs. Bermudo graciously agreed. She warmly touched the audience's hearts by telling actual stories of how persons with autism and their families are coping up with the challenges of living with autism. Emotions overflowed at the conference room. As a result, the attendees promised to spread the message of autism acceptance and inclusion, individually and collectively.

Such was the beginning of autism awareness in one school -- inspired by a special child, Erina Aihara. By opening their doors to an individual with autism, the school also opened the minds of the students and the teachers to respect, compassion and understanding of individuals on the spectrum.

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Posted in: best,chapters,community,pers

DanceAbility: Now Everybody’s Dancing

by Gerard Joseph Atienza, Secretary ASP Bacoor Chapter

I’m not really a dancer, but being privileged to be part of Autism Society Philippines’ (ASP) contingent in the DanceAbility Introductory and Teacher Orientation Workshops, held on 14-18 May 2013 at the Cultural Center of the Philippines (CCP), made me fully appreciate the beauty and art of dance, particularly one that is inclusive of everybody.

The DanceAbility seminars were part a project of the United States Department of State, the US Embassy in Manila, the CCP, and DanceAbility International, an organization promoting inclusive and accessible dance for all people, with and without disabilities.

PWAs Gerard and Thara with artistic director and teacher

I, along with Teacher Ana of SpedDance Movement Therapy Services, Teacher Gina of ASP Laguna Chapter, and my fellow Thara, were among the workshops’ participants, who came from different regions in the Philippines. The participants ranged from teachers to dancers, and some of the dancers themselves have disabilities, specifically the Dancesport of TahanangWalangHagdanan, who had performed in Pilipinas Got Talent.

Heading the workshops were Alito Alessi, DanceAbility founder and artistic director, and Karen Daly, DanceAbility teacher. Alito and Karen were chosen as Art Envoys of the State Department to share the culture of America to the world through dance. They have been doing the seminars as part of their missions in Indonesia, Mongolia, and here in the Philippines.

During the workshops, Alito introduced us to the concepts of dance improvisation, specially crafted throughout the years to include people with and without disabilities. Karen, who is a wheelchair user herself, joined us and helped facilitate the activities as we practiced the concepts of inclusive dance that have been taught to us.

I was amazed at the passion imparted on and exuded by everyone, particularly when we were doing improv dances during the five days we were at CCP. More than that, we were imparted with best practices on working with a diversity of individuals, regardless of what or who they are, whether they have a disability or they haven’t.

As the end of the workshops neared, Alito and Karen challenged us to share what we have learned during those five days with our students, our fellows, and everyone in the community. After all, as what they have said, they have come to share their techniques to everyone, and as such, we have to do our part.

Again, I’m no dancer. But now everybody’s going to be dancing.

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Posted in: 4parents,4pros,4public,4pwas,pers

The Story I Don’t Want To Tell

By Cheska Managbanag, 11 years old, ASP Ormoc

When I was a toddler, I used to ask my parents every night before I go to bed when will be the day I can cuddle my little brother. Why ? I had this funny feeling that I was so alone and lonely then because I don’t have a playmate as what most of my classmates and friends have. Mommy always told me to wait but I was so persistent.

Exactly six years and ten months ago, a cute and bubbly, healthy baby boy came to our lives. I felt I was the happiest sister in the whole world, that I waited until wee hours in the morning just to be the first one to catch a glimpse of my brother. Yes, I was already an Ate! My heart screamed with so much joy. I will have someone to camp with me whenever my family would go out for a picnic or a simple family bonding. I would have someone to care of and protect. He will be my best friend and bodyguard from bullies. When my baby brother cooed and uttered his first syllables, I was ecstatic. It was music to my ears.

But life is not always a bed of roses .The biggest blow came to us when 30 months after, Lorenzo was diagnosed with ASD (Autism Spectrum Disorder). It was vague to me at first. ASD? What’s that? Is it contagious? Is it like the big C? I was so confused. I couldn’t communicate with Lorenzo. He can’t even look at me whenever I tried to hug him. He’s so touchy. It took me a little while before all the unusual things my brother does began to sink in. Lorenzo, at first sight, is a typical hyperactive kid. Good-looking with smiling eyes especially when he suddenly burst into a hearty laugh. But he is a Child With Autism. And CWAs have peculiar characteristics and have special needs.

I was devastated. Everyone was!

At home and in school, it's always Lorenzo’s situation that concerns almost everyone in the family. Mommy is working terribly harder because of him. She left us for months for trainings in special education and juggles two part time jobs all because of Lorenzo. Daddy, on the other hand, works double time and is so engrossed with autism advocacies that oftentimes, he forgets the fact that they still have two other “normal” kids.

Yeeaah... I know I shouldn’t even have thoughts and feelings like these but I’m just human. The pressure and emotional tension, not to mention the high expectations of my parents on me towards my brother, is taking a toll on me, too. I’m still a kid. I also wanted to enjoy my childhood while I still can. Lorenzo is austistic! That’s it! No wonder he usually gets most of my parents’ attention and care next to Andre, our youngest. That’s why he always gets the first “pasalubong“, the first glass of milk, the first pack of cookies... and all other firsts! I hated it.

But when my mom and dad started to bring me to Lorenzo’s therapies and advocacy trainings with teachers in all the six central schools in Ormoc, it slowly dawned on me. It’s not just part of their job that they are doing it; but it’s their strong commitment to raise awareness to all families with special children that really caught me off-guard. There had been countless trials and challenges in our family in the past; but not once did I ever witness my parents question God about all these. Not once did I see them quiver in their faith. And I asked myself, why am I having these evil thoughts towards my brother? What if I was the special child and not him? Will he think of me as such also? Will he hate me too?

Lorenzo is just like me, only he is special. But I love him so much. I would rather feel and experience pain than to see my brother feel it. He is non-verbal, so he could hardly express himself. It may seem difficult to watch a special child; but it is so easy and endearing to love one. In spite of the fact that he could not possibly work at the same pace like regular kids or has equal chances of success as we chase our childhood dreams. For me, Lorenzo will always be the brother I dreamed him to be.

Everything happens for a purpose. For me, God made Lorenzo special because he is an angel brought from heaven to make our lives’ happier and more meaningful than ever. He gave him to us because He knows that we can go through it with flying colors. Now, a day for me isn’t called a day without seeing my brother’s smile. And after a lot of good and not-so-good things that had happened, I am glad Lorenzo is special. After all, WE ARE ALL SPECIAL!

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Posted in: pers,special

Towards a world of kindness and compassion

A Statement from the ASP Board of Trustees.

Autism is a neurological condition affecting millions of Filipinos. Individuals with autism have a unique way of processing things they see, hear, feel, taste and smell. "Autistic" is not a joke or an insult synonymous to being unintelligent or indifferent.

Kindness and Compassion poster

The use of the word "autistic" in Archbishop Soc Villegas' speech is unfortunate -- especially since many in our membership are among those who draw passion and strength to advocate for our children with autism, from personal relationships with God. We trust Archbishop Villegas will take this opportunity to reflect on his actions. We are writing a letter to Fr. Soc to assess how, moving forward, he can help champion the needs of the Catholic subset of our membership from within the Church.

The Autism Society Philippines takes this incident as yet another glaring reason why our sector should strive harder for public autism awareness, education and acceptance.

Our organization advocates to create a society where our children can grow up happy, productive and accepted. We labour so that more Filipinos can look at autism, not with outdated perceptions, but with kind, compassionate eyes.

We need no apologies, no speeches, no rhetorics.

We need our church, school, business and government leaders to educate themselves on autism issues and to create long-term "inclusive" programs that will benefit individuals on the spectrum.

We need public figures who are silent about autism in their families, in fear of the social stigma, to speak up and join our campaign to stop the commonplace indignities and make life better for Filipino individuals and families who live with autism.

To the passionate ASP members and the caring multitudes who have reached out to us in support of this vision, maraming salamat po!

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Posted in: leaders,pers

Strike Two: Reflections on Senator Santiago's Actions

By Mona Magno-Veluz, ASP National Secretary.

JR Tan

The actions of Senator Mirian Defensor Santiago resonated strongly with JR Tan, a graduating college student, taking up BS Accountancy, with minor in Biblical Studies. As an individual on the autism spectrum, he is passionate about autism rights and is one of the first self-advocate members of ASP. JR sent the Autism Society Philippines two open letters in reaction to the senator's angered statement to her detractors, calling them "mongoloids", last week.

His first letter:

Dear ASP,

I was shocked to read today’s Manila Bulletin article on “PWD advocates score solon for use of word ‘mongoloid’". This offends families of loved ones with Down Syndrome and Persons with DS.

In 2008, I remember Senator Santiago misusing the word autistic to refer a general who had no response or reaction to her statements. After my comments were published in Anak TV’s column (November 9, 2008) and ASP sent her a letter, I was glad the Senator sent her apology.

Now, with this issue on the offensive use of the term mongoloid, here is my advice for ASP.

First things first, Senator Santiago should be careful with the choice of her words. She should check the internet for the right words to use when speaking in public.

Secondly, if possible, NCDA or the National Council on Disability Affairs should sponsor a one-one-one seminar for her regarding disability rights. ASP can also send her a copy of RA 9442.

Thirdly, in future if she violates RA 9442 again or vilifies any Person with Autism or Down Syndrome or any other disability, she must be fined P200,000 and serve jail time, at the discretion of the Secretary of Justice.

In baseball, they say, “three strikes, you’re out.” Let’s give her another chance and wait for her apology.

Sincerely,
JR Tan
Self-advocate

Later in the week, the senator issued a statement, explaining her side -- which our friends from the Down Syndrome Association of the Philippines recognized as a reconciliation effort. JR followed up with another letter.

Dear ASP,

After reading her official statement, I would still give Sen. Santiago another chance, although she is not sorry.

If she has the wisdom to create bills that will benefit People with DS, just like what she did for People with Autism and fight for their rights [frag].

Although she is offering her hand in friendship, it may take time to rebuilt trust.

Next time, I hope if the Senator will use words, she will be more sensitive, not use derogatory words or misuse or label incompetent people by comparing them to PWDs.

I want to wish her all the best in pursuing her new career in the International Court of Justice and may she do the best that she can.

Sincerely,
JR Tan
Self-Advocate

JR's astute opinions are his; but are echoed by many in the PWD community.

For the record, the good senator who has been so vigilant in introducing and supporting laws that benefit the autism community, did NOT violate Magna Carta for Persons with Disabilities, as she did not actually ridicule any PWD.

But just like 50Cent, who called one particularly unpleasant Twitter troll "autistic" earlier this month, Senator Santiago felt it was clever to use a disability to put down an aggressor.

My thoughts: As individuals, we should strive to look at people (disabled or not) with compassion and empathy -- not with labels that are meant to make us feel superior.

For our public officials, the bar is set higher. Your actions should represent what our society aspires to be. We expect you to be human and to commit mistakes. But we also expect you rise from even your smallest mistakes with humility, a firm resolve NOT to repeat the same mistake and a genuine effort to make amends.

It is my earnest hope that Senator Miriam, whose fighting spirit mirrors that of many passionate autism parents, does not -- using JR’s baseball analogy -- “strike out”.

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Posted in: pers

Take and Give -- ASP’s Support for Parents

By: Jan Peña, ASP National President.

Parents of newly diagnosed children with Autism Spectrum Disorders (ASD) are alarmed by common concerns about their children. Some of these were mentioned during the just concluded Family Support Group held on 23 June 2012 at the ASP National Office.

Elizabeth Udquin leads Family Support Group

Among them are undeveloped speech, or inability to express their wants or needs; lack of focus and low attention span, manipulative behavior (such as crying and or having tantrums); hyperactivity, repetitive behavior, fixation to objects, sleeping and toileting problems. With anxiety at a toll, early intervention, as advised, will be vain, unless it begins with parents' education.

Early on, parents need to understand that a child with ASD is endowed with a brain that is differently configured or "wired" from that of a neurotypical (the "normal" as we say). The range of "atypical" and "disturbing" patterns of behavior that we perceive is truly his nature -- a result of his brain's condition.

While there is no way that we can change the child's brain so that we can "make our children become like us”, there is a limitless number of ways by which we can help them to overcome (not solve) the sensory, behavior and communication difficulties.

First, parents need to understand their children with autism first; then accept their children’s condition; but not to get stuck in their diagnosis. Parents also need to know their own child, and to understand that while he is alike in many ways with other kids in the spectrum, he is also different.

Knowing your own child should challenge parents to summon your God-given wisdom and creativity to turn your child's deficits, fears and fixations into strengths that will enable him to overcome and even excel. This means parents must change focus from anxiety and worrying to actively studying strategies that could address the child's present needs (not future needs!)

We can learn from what therapists and teachers do to teach basic skills as sitting, waiting and activities of daily living (ADL). We can learn from seminars and through reading. A word of caution though, not everything we get from seminars and books may not be exactly compatible to the nature of our child, nor are easily available and affordable. However, we can apply the worthy principles by modifying the settings, materials or content according to our child's needs and capacity.

Last, being part of a support group like the ASP may already address half of the parents' anxieties and fears. A support group is made up of people who by their common experience are able to relate and exhale their loads to one another. More than that, a support group like the ASP is made up of people who are "experienced" and have hurdled the toughest tests and are now acting as mentors to fellow parents. Best, a support group like the ASP offers opportunities and services which members not only TAKE but also GIVE.

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Posted in: fsg,pers

Deputy Dodgers Book Launch at Summer Komikon 2012

By Tiffany Tan, ASP Correspondent.

Gabriel de Jesus Atienza’s “Deputy Dodgers: The Ulstran Saga” was launched at the Summer Komikon 2012 at the Bayanihan Convention Center, Unilab Compound, Mandaluyong City last 26 May 2012.

PWA Gabriel Atienza in Deputy Dodgers book launch

Komikon, short for Philippine Komiks Convention, is an annual event promoting the awareness and reading of past and present comics made by Filipino artists. The event showcases recent graphic novels made by local comic creators, using various styles of drawing encompassing numerous genres.

Author Gabby Atienza, who describes himself as a middle-aged autistic, worked almost three years with digital artists and other experts in graphic arts to streamline this much awaited limited edition, hard-bound and 300 pager graphic novel.

"Deputy Dodgers: The Ulstran Saga" is reminiscent of Japanese anime characters from Voltes V, Mazinger Z and Daimos characters from the ‘80s, to which he credits to his own fantasy world. The book is Gabby’s fantasy world of science fiction, action and comedy all rolled into one.

Grab your copy of "Deputy Dogders: The Ulstran Saga” together with Gabby’s biography “My Life as a Comic Book”. Contact Gabby Atienza at (0916) 316-2650.

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More stories on the amazing Gabby Atienza: Aspie’s Comic Book Life, Gabby’s Comic book launch in 2009, and Blessed Singleness.

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Posted in: pers

"Different But Not Less"

By Josephine Palomares, ASP Diliman Chapter President.

Different But Not Less poster

Macky was born pre-mature at eight months old as my doctor has to ‘cut me up’ because I was having pre-eclampsia (hypertension). He was a healthy baby and my first-born at age 34.

When he was two and a half, during a family outing at a theme park, he was so hyperactive – running around the park uncontrollably. He spent the whole day running and staring at anything that moves around. My sister told me to have him checked because he seems ‘weird’. He was non-verbal (old folks would tell you that maybe he is just ‘delayed’ as most boys are) and seemed deaf; did not have eye-contact; and would watch TV sideways.

What could be wrong with him? We brought him to a hospital to have his ear checked. His hearing was ok.

On our first visit to a Developmental Pediatrician, the diagnosis was autism and it was to be a lifelong condition. Of course we did not believe her and continued our rounds of several pediatricians, psychiatrist and psychologist. It was to be the most stressful year of my life.

Several questions arose as to what could have caused it. Is it during my pregnancy? Was it my fault that he was born that way? What did I do? Have I not been a good mother?

Finally my husband and I decided to face it head-on. We gave him all the therapies he needed; but we resolved never to treat him ‘special’. At six years old, Macky is still non-verbal. His speech therapies continued till last year because his therapist had to leave.

I read all I could find out about autism and I joined ASP (Autism Society Philippines) and became an active member. I advocated for my son and joined their activities. At ASP, I found out that there are other kids that have multiple disabilities (co-morbid condition with autism). I met Moms who would later inspire me and change my perspective on autism. I realized I am not alone. I was thankful; and counted my blessings.

Macky is now 13 yrs old and highly-functional. He attends a regular school and is fully-included. He is now verbal and plays the piano. He is just like any regular teenager except that he still has some ‘odd’ mannerisms like jumping when excited and looking sideways.

I wish that Macky will be happy and will go about life without so much pain and difficulty. That he will find work and have friends. I hope that when Macky becomes an adult, our society will be more accepting and tolerant of people like them.

“For they may be different, but not less” (quote from Temple Grandin).

*****

A Special Place is the flagship project of the Association for Adults with Autism Philippines (AAAP), a non-profit group conceived and established by parents of persons with autism. The association aims to provide sustained enrichment opportunities and long-term care to these individuals as well as offer means to achieve personal growth, social interaction, and a cooperative life among their peers.

*****

This article first appeared in the print and online version of the Manila Bulletin on 25 June 2012.

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Posted in: pers

On finesse, fitness and freedom

By Maria Angela “Yanna” Aragon.

PWA Yanna, the author (third from left), Vicente Rubio (in shorts) and seminar organizers.

An SMS was sent to me by Perlita So the day before the back-to-back seminars’ (“Autism, Health, and Well-Being”, and “Autism and Mentoring Life Skills through the Ages”) were to have their first run, asking if I would be interested in attending. My interest was piqued after going through what was written in the attached promotional brochure. After informing Tita Peng of my intent to attend both sessions, and listening and having the chance to talk to Ron Vicente Rubio (the speaker), I was thankful that I received that text message.

I had the chance to talk to Mr. Rubio as soon as I entered one of Quality Life Discoveries’ activity rooms, where the seminar was held. While in conversation, I didn’t notice anything that gave away his being diagnosed with Asperger’s Syndrome. Then again, he mentioned the same of me. From what I remember, he was specifically talking about how I carried myself -- perhaps my body language?

Once the first session began, and the Powerpoint slides were being flashed on screen, I was surprised to find out that autism incidence -- in the US, at least -- was on the rise. Even more so when the session turned into a mix between an etiquette and a fitness class, as we were taught how to properly sit, stand, and breathe -- not that I complained. On the contrary, I enjoyed being able to move a bit instead of sitting all throughout the session. The second session was more of a summary of the issues plaguing people at certain stages of their lives, supplemented with stories of the speaker’s experiences of mentoring various individuals. I was a bit disappointed that most, if not all, of the information mentioned by the speaker were in the context of the United States. As he had grown up there all his life, it’s understandable though.

The most interesting part of the seminars came during the Q&A after the second session—when it turned into a mini-demonstration of how to use some martial arts techniques to subdue and disarm a potential attack. For those wondering how this came about, one of the participants asked how they can subdue students with violent tendencies.

However, the most insightful part of the seminar came near the end, when Mr. Rubio made mention about two ways by which children of special needs -- perhaps all individuals, now that I think about it -- are made to relate with the world. One way is to pamper and spoil them, protect them from all that is ugly and painful. The other way is to have them fend for themselves, to deal with that which can hurt them, to seek their own survival. At that point, I was reminded of one of the most important lessons I learned in a philosophy class, back when I was in college. It was a lesson on freedom: that freedom is not found in sheltering one’s self from the world -- limiting the choices one made. Freedom is found in the stepping out into the world, where many more choices can be found. Mr. Rubio also talked about letting individuals decide for themselves, and being accountable for their actions.

I then realized: being too overprotective of individuals -- to the point of making decisions for them -- would impair their capability to choose for themselves when they get older. In addition, they might have difficulty moving around in, and contributing to, society. With this, I am reminded of seeds kept inside those packs sold in supermarkets. Though they are in perfect condition, all are useless until they are planted in the real world. On the other hand, exposing a child to the real world entails him getting hurt and having to make decisions for himself from time to time. However, with guidance, all are ways by which the child can mature and be independent—much like the bud that, although exposed to the elements (and with proper care) can grow to become a sturdy and useful plant.

I know that teaching special children to breath, sit, and stand properly may seem silly vis-à-vis giving them the capabilities to be independent, but performing these actions will not only promote good posture; but will also allow them to keep calm and to focus, allowing them to tame their ‘chattering monkeys’ and prevent them from having meltdowns. In addition, having them focus will allow them to be able to make clearer decisions. Combine this with being able to advise and challenge them to live out important life lessons, without spoon feeding; and they will be one step closer to living independent and fulfilling lives.

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Posted in: 4pwas,pers,seminar

Sister Therapist

By Dang Uy Koe, ASP Chair Emeritus

During the recent national conference on autism organized by the Autism Society Philippines, the panel discussion among four young women who grew up with autistic brothers drew both laughter and tears from the audience.

One of the panelists was our Angel Talker this week, Jenette Vizcocho, a speech therapist at Therapy Works and Skill Builders. She and her family are active leaders of ASP Baguio Chapter.

*********

I don’t know exactly how it happened but I would mostly be the one tasked to care of my youngest brother Josef whenever we went out. I don’t know if it was because I was the one who showed the most initiative or if it was asked of me.

At three years old, Josef didn’t really speak to us or told us what he wanted, and the family had fallen into the routine of comforting him when he cried. He was very cute, loved watching his favorite cartoons and movies over and over again, even impressed us by repeating whole stretches of dialogue between characters in verbatim.

I don't think I ever really noticed that he was delayed in terms of his development. How could he be? He played with us, could recite entire speeches from memory; I never knew there was such a thing as echolalia, or that his tantrums were unlike those of children his age.

Jenette and Josef

Once, while we were at the mall, Josef wanted to ride the roller coaster. I usually accompanied him to the arcade, and since the ride had already started, we had to wait for the next run. He wanted to ride immediately. He started crying and I had to hold onto him firmly when he tried running through the gate and toward the moving cars.

He had these Snoopy sandals he loved, and whenever he didn’t get his way, he would kick them off with such surprising strength that the slippers flew in different directions. He would jump up, fold his legs under him, and land heavily on the floor. Sometimes, he would bang his head on the hard surface. I remember how red my face would get as I crawled past people on my hands and knees looking for his sandals, or as he howled at me.

A woman approached me and said, “Special ang kapatid mo, noh?”

I didn't understand her and she reiterated, “Meron siyang diperensya.”

I stammered, no, there was nothing wrong with him, he just really wanted to ride the rollercoaster.

She kept on talking but I grabbed my brother and steered him away.

Shortly after, my brother was diagnosed with autism.

Coping

Sixteen years later, I finished Speech Pathology, never really being able to help my brother. by the time I had graduated, he had been reassessed and we had been advised that he was done with his share of Occupational Therapy and tutorial.

Josef’s in college now, works part-time at my sister's restaurant, has a Facebook account with probably more friends than all of his four sisters combined, even insists on wearing the latest fashion and acquiring the latest gadget he feels he needs.

I can say he's very smart. He strives for independence; he can commute around Baguio on his own, even snuck out and rode the MRT by himself once when he was visiting in Manila.

He knows how to save up for things he likes, he can be asked to run errands, he bargains with my mother whenever they disagree on opinions.

Jenette and Josef

But when things overwhelm him, when he feels cornered or frustrated, he still physically expresses it, possibly for the lack of ability to verbally express his feelings, sometimes in small actions such as slapping his knee, sometimes in larger reactions such as shouting or collapsing onto the floor. It is during these moments when I feel bad, when I wish that we had seen or at least anticipated that his needs go beyond being able to thrive in school; that as he grows older and more capable, so too do the demands society has on him.

I guess that’s the problem with being both a therapist and a sibling; I have frustrations and expectations.

Jenette and Josef

I am hurt when he does what he likes without thinking of other people, because he likes his routine or can't control his impulses.

I feel bad when he is being taken advantage of by his classmates- when they ask for money or load, or when they make him dance in the bus during a fieldtrip — and he is perfectly happy doing so, thinks doing these things is what being a friend is.

As a therapist I know he has to deal with it on his own, but as a sibling I want to charge his school and face those bullies.

It can be overwhelming when you know what to do, or how to do it. But the story is different when I, being his sister, have to choose between roles.

This article first appeared in the print and online versions of the Manila Bulletin.

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Posted in: angels-talk,pers

Autism and heartbreak

By: May Angeli Navarro, ASP Member

I never thought motherhood can be this hard. It doesn’t matter if you have an autistic son or not. The grinding and whirlwind activities of everyday is so grating at times. I remember having suicidal thoughts during the first six months of my son. While sitting on the crib, watching him sleep, I thought about slitting my wrists because I can’t take the hardship of waking up in wee hours of the mornings. I thought then that if this is my initiation to motherhood, I wasn’t sure I’m up for it.

Mommy May with son David

How I got through it is one of the hardest thing I have done in my life. Looking back, I’m glad I made it. But before the baby, the pregnancy already left me feeling utterly helpless. I never liked that feeling and I’m not even sure if I want to go through that experience again. And now with an autistic son, the experience of motherhood has taken a more challenging uphill climb.

I wish I can relate to regular mothers with regular kids. But mine is not a regular one, this one comes not only with the usual challenge of childhood but it aslo comes with the uncertainty and unpredictability of autism.

They say I shouldn’t lose hope, pray to God and He might grant me a miracle. I haven’t lose hope, I’m just taking it one day at a time. There is still a hope in my heart that he will grow up like a regular kid but I want to be prepared. I want to assure him of a good future. Yes, I’m scared what tomorrow might bring but I’m trying my best that he will be given the best love and care I can give him.

With therapy sessions and mainstreaming activities and more speech therapy to come, I hang on to my faith and my sanity. Fiction writing helps. It takes me to a different world where I’m a different person, in a different time and place. Blogging also helps. It’s like I’m talking to someone who can relate to me. Writing is my ocean I can swim to when the real world is hard on my feet and my heart. I plunge into this sea of creativity of emotions, of feelings and feel myself refreshed, loved and accepted.

Though writing is becoming more difficult with more chores and more worries about life, I keep on it as much as I can, snatching small pockets of time while watching my son play in the living room or when he is fast asleep, my favorite part. When I write, I feel human again, not an automaton of repetitive chores. I feel I have a voice again, that I can contribute.

Autism has broken parts of me like a devastating heartbreak. There are moments when you forget about it but when symptoms of this condition rears its head again, you become reminded that all is not right in your world again. UnLike getting a glimpse of the man who broke your heart, this however, breaks your spirit. Because it is your child, you feel that nothing can undo the broken dreams you have for him. You grieve for his potential, for the boy who can talk to you and show you his dreams. But in time you learn to accept it. Like when the love of your life marry someone else, you accept that your son may not grow up the way you want it him, you realize that some things are beyond your control and you have to accept it.

Turn your scars into stars. A profound statement that I will always remember, that no matter how devastating the situation is you have to find something beautiful out of it. You have to unearth the strength out of the sadness, to forge something unbreakable inside of you. I have learned something in heartbreak, that true love doesn’t always mean holding on, sometimes it also means letting go, that hanging on is being selfish, that loving someone means letting him find his happiness even without you. Yes, it hurts but it is the right thing to do.

Sometimes, you really have to be cruel to be kind. And that is also how with autism, like praying for someone to come back, I also prayed hard to this condition will be erased in my son, that it shouldn’t happen to him. But I realized that maybe there is a reason why God gave him to me, why us, when we didn’t expect it. He wanted us to be his parents. Then along the way, the unfortunate things that life threw at us is something we can transform. That to get back at life you should form something positive out of it, that it shouldn’t break you down but makes you stronger. It should so the tears and the pain wouldn’t be in vain, that life will still go on and still be beautiful because of it or inspite of it.

Autism tested my faith. I learned that prayers are not always answered and in time you will know why. My world have been shattered because of it but I’m also rebuilding it into something new, something different and something more beautiful.

Uploaded with permission. This was first published as a blog entry on 02 November 2010.

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Posted in: pers

Autism Binds: Our Family’s Journey

By Mona Magno-Veluz

Acceptance, in baby steps

My husband and I had lofty dreams when we married in 1991. Our son, Carlo Gregorio, was born more than a year after we married and was a celebrated addition, being the first male grandchild to my parents. He grew into a handsome and energetic toddler, who received so much love from his grandparents, aunts, uncles and cousins.

Amidst the joy, I began to notice little idiosyncrasies; and being the new mom that I was, I brushed them off as personality quirks. Professionals soon gave us a name for the condition my son suffered – AUTISM.

In the beginning, the possibility that my son, as some doctors told us, might not even finish grade school gnawed at me. I was afraid that my son will be “least favoured” in my family for his intellectual limits, as we have always put a great importance on academic accomplishment. I was embarrassed for my son’s social faux pas, scared that he will not grow out of them. Of course, there was that unspoken sense of guilt – I searched my brain for things I did or food I ingested during my pregnancy that could have damaged my son so irreparably.

Special bonds

My husband, who had always been more accepting and laid-back, was confident that we could work together to help Carl be the best he could be. He became my rock and strength when our small son became exceptionally difficult. And contrary to my early fears, our families have been paragons of generosity of spirit – helping us when we needed respite and loving Carl unconditionally. My father and brother have formed special bonds with my Carl – three generations of Carl’s! My sister would give me “alone time”, taking Carl out to give me a few hours of quiet. His cousins would rush to his aide when other kids are less than kind to Carl. Our own cousins seem oblivious to his weaknesses, offering only encouragement at Carl’s improvement at every family reunion. I know our journey has been made easier by the kindness our extended family has shown over the years.

In hindsight, it was when I tore the weight of negativity from my shoulders, when I began to look at my son’s autism as part of our family’s bucket of challenges that I was able to help Carl better. I have become more confident about talking about the challenges of autism to other parents, welcoming the opportunity to help find answers to questions or to simply compare notes. My husband and I were able to help our some cousins and friends when their children were also diagnosed with autism. Carl’s younger siblings — 12 and 8 years old — are themselves growing up to be outspoken autism advocates. The sense of humour helped too.

The theme of this year’s National Autism Conference on 28-29 April 2012 at the Crowne Plaza in Pasig, strikes very close to home. We, like many parents, are taking each challenge as it comes, at peace with the fact that our family is strong because the challenges of autism bind us to become stronger. It is the families touched by autism that propels people to work towards autism awareness, education and advocacy.

Carl and the future

Carl, a typical teenager in many ways.

Now 19 years old, Carl has graduated from high school and has enrolled at Independent Living and Learning Center, where he has been honing his social skills and practicing college-appropriate classroom behaviour. This year, he is entering their Job Readiness Program and will be interning in an office. My husband and I are thankful for institutions like ILLC which has coached Carl into the promising young adult he is today.

Like any regular teenager, Carl loves to spend time with his friends and teachers — on the phone and on Facebook. He enjoys school-sanctioned dance parties, community trips and school programmes; and has hosted several school events and family reunions. He participated in the Special Collection 2010 in UP Diliman, a fashion show starring PWDs; and is a member of the ILLC Hunks, a dance group that performs regularly at autism community events.

Carl has always been enamoured by the stories of the taipans of Philippine business; and dreams of becoming an industrialist himself. We helped Carl organize “Gregarious Gifts” (http://www.facebook.com/gregariousgifts) – a venue where he can create and market hand-made products. When there is an upcoming bazaar, the entire family pitches in and helps Carl meet his volumes.

Despite the distance Carl has gone, the future is still a scary entity. But among all the institutions out there designed to help individuals with autism, the hardest-working, steadiest, most consistent group I know, that will help Carl through thick and thin, is our FAMILY. And that thought brings me a semblance of peace.

An edited version of this original article was first published in the Manila Bulletin print version and online versions on 23 April 2012.

*****

Mona Magn-Veluz is a graduate of Business Administration University of the Philippines. She continued with further studies in Applied Business Economics and Strategic Marketing at the University of Asia and the Pacific and the London School of Business. As a practicing marketing communications professional, she has held various global management roles in Ericsson Telecommunications, Telus International and Emerson Network Power. As an ASP member, she had taken her autism rights advocacy into the social media arena by blogging and tweeting about hermany adventures as "Mighty Magulang".

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Posted in: pers

Silver Linings

By Pinky O. Cuaycong

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.

Savage Chickens poster

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.

*****

Pinky Cuaycong is Kittymama, full time mom of two boys (a 19-year-old college student and a 17-year-old with profound autism), part-time writer, and blogger. In Okasaneko Chronicles, she writes about her life’s deepest passions: her husband of 21years, her teenage sons, autism advocacy, and Hello Kitty.

Catch Pinky Cuaycong as she shares her Family's Journey, together with other parents in ASP's 12th National Conference "Living with Autism: Hope at Home". For more information, click here and to register, click here.

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Hurry! Only 1 day left to avail the Early Bird Rate and Group Promo for the 12th National and 2nd Southeast Asian Conference on Autism. For a group of 5 registrants, 1 additional seat is FREE.

Registrants may pay by depositing the payment to Autism Society Philippines, Metro Bank-Kamias Branch, Savings Account No. 047-3-04751874-2. Kindly fax to 7-903-5496 or email to the address below the deposit slip with the name/s of the participant/s.

To know more, you may call us at 7-903-5496 or email us at aspnc2012@gmail.com.

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Posted in: pers

Living with autism amidst disaster

Autism Society Philippines (ASP) will hold its 12th National Conference and 2nd Southeast Asian Conference on Autism on April 28 and 29, 2012 with theme “LIVING WITH AUTISM: Hope@Home” at Crowne Plaza Manila Galleria, Ortigas Ave. corner ADB Avenue, Quezon City. One of our panelists in “When Disaster Strikes Home” is Mr. Alejandro Cabason, Jr, ASP Marikina Valley Chapter President and a father to Vinz, a 13 y/o boy with autism.

Below is the experience of Alex and the rest of his family during super typhoon Ondoy:

"We were a bit lucky that Typhoon Ondoy struck and hit our area at Provident Village around 11AM, unlike in Cagayan and Iligan Cities. But speaking of typhoons and flooding, this calamity is no longer new to me in the first place. Our province (Southern Leyte) often experiences typhoons particularly during "ber" months. In addition, I also had an encounter with flooding while I was on vacation in Butuan City in the early 60's and in Sta Mesa, Manila in the 70's.

"Back to Ondoy, when mudded water entered our garage, I knew that something worst is about to happen. For the past 20 years we were at Provident, flooding never reached our garage area. And if there would be flooding, it was purely from rain water and it was always outside our elevated bungalow house.

"It was September 26, a Saturday, and I instinctively gave instructions to all my children to pack their most important belongings and transfer to my brother-in-law's two storey house, just beside our house. My three children started packing important things hastily except our youngest son, with autism, Vinz. His innocence-filled eyes just stared with what his siblings were doing. Unlike all of us, he just walk ed very casually albeit carefully without bringing anything except his slippers. As the flood was fast rising, all of us silently kept our fear but never saw that in Vinz.

The Cabason and Martin families during the Typhoon
Ondoy (Photo by Philippine Daily Inquirer)

"We also had our share of anguish when the water already reached the second floor of my brother-in-law 's house. But again Vinz was a picture of calmness and serenity. When we decided to transfer to our roof's house via the branches of a mango tree between our houses (so we can be seen by rescuers that never came), Vinz simply followed with us every step of the way. Even when the water leveled at 14 feet, Vinz just stared at the water, and oftentimes asking "his way" of the flooding.

"While we adults were preparing for something that we could cling to and help us afloat, Vinz accompanied his siblings praying and reciting the holy rosary. But unlike his siblings, Vinz never had a fear and anxiety in him. In short, he perfected the art often portrayed among believers, he simply knew that God will bail all of us from this natural wrath.

"When we decided to go back to spend the evening at my Bro-in-law's attic, Vinz never had a problem peeing unlike us. He just went straight to the window and did his thing. When all us were already uncomfortable because we were all wet including our underwear, Vinz was so relaxed wearing only his uncle's big shirt.

"Throughout the ordeal, Vinz never complained and worried. Having autism must be an advantage to most children with autism and with special needs during calamities."

*****

Register now to the 12th National Conference on Autism to find out how you can prepare the strike of typhoon. You can email us at aspnc2012@gmail.com or call us at 7-903-5496 to register. For more details on the 12th National Conference on Autism, click here.

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Posted in: nac,pers

Filipino Artist With Autism Wins UN Stamp Design For WAAD

By Dang U. Koe, ASP Chair Emeritus

The United Nations Postal Administration (UNPA) announced the winning entry “Victory” as one of the finalists in a worldwide search for talented artists with autism.

“Victory” will be featured in the UNPA issued stamps and first day covers on April 2, in recognition of World Autism Awareness Day, declared to encourage member states to take measures to raise public awareness of autism.

The artist behind “Victory” is Jose Antonio Tan, aka J.A. Tan, born and raised in the Philippines and a graduate of Emily Carr University of Art + Design in Vancouver, Canada. J.A. and his work will also be featured in the book called “The Art of Autism: Shifting Perceptions,” together with other artists with autism.

"Victory" acrylic on canvass

On J.A. Tan’s website, http://artofjatan.com, he issues this statement on “Victory”:

“One young boy listening to a different tune as he makes sense of the world around.

"Not an easy task as he perceives the world differently from others.

"He is met with confused looks, angry looks, disturbed looks, happy looks, questioning looks...so many questions but no one answer.

"Yet this young boy continues on his journey never giving up... until... supported by his immediate family — all five of them always a strong presence in his life — friends, and professionals this young boy today has claimed victory over the many challenges of his life.

"Today, with happy faces around him he shows the world the “VICTORY” of an artist with autism achieved with patience, discipline, perseverance, love, and a positive attitude.”

During his visit to the Philippines in 2010, J.A. and his family donated proceeds of the sale of his painting “Homesick for Manila” to benefit ASP Laguna Chapter’s programs for training and purchasing of additional equipment and tools for their bookbinding enterprise. His mother Zelie shared how their family hurdled obstacles to help J.A. become the person he is now. Their family wanted an organization, like ASP Laguna Chapter, working with adults with autism, to benefit from their son’s work.

Of his art, J.A. Tan wrote: “I have come to the realization that I have always used art as a way of helping myself bring out my thoughts, feelings and ideas. I consider it an integral part of my existence as each work is a personal journey of myself with myself, and myself with the world, bringing a feeling of peace and happiness since things become clearer to me through the images and visual pictures before me.

"Coping with everyday life as an artist challenged with autism, I strive to make a difference in the world. Through my work, I hope to make the world less of a mystery and less scary for everyone. I hope to be able to make concrete images of how someone like me thinks, feels and interacts with people.”

J.A. Tan’s “Victory” and other UN Autism Awareness Commemorative Stamps will be available for sale on April 2. The stamps will be issued in 3 separate panes containing 20 stamps repeating 2 different designs 10 times. They will be issued in the UN Post Offices in New York, Vienna and Geneva. To order stamps, go to http://unstamps.un.org

*****

To celebrate the 5th World Autism Awareness Day, Autism Society Philippines has prepared the following pre and post activities:

- 01 April 2012, 5:00pm, advocacy concert featuring ASP Dream Girls and other performers with autism, followed by “Light it up Blue”.

- 01-08 April 2012, photo exhibit, all at SM City Fairview.

- 02 April 2012, 1:00 pm., forum on Supportive Environment for Persons with autism and a painting exhibit at the social hall of DENR Central Office.

- 02 April 2012, 6:00, “Light It Up Blue” initiative of the WAAD National Working Committee, National Council on Disability Affairs (chair), Autism Hearts Foundation (vice-chair), supported by Autism Society Philippines.

Our Angel Talker this week is Tiffany Tan, national board secretary of Autism Society Philippines, mother to self-advocate, JR Tan. Her sources: United Nations and Jose Antonio Tan’s website.

This article first appeared in the print and online versions of the Manila Bulletin.

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Posted in: angels-talk,pers,WAAD

“Ako Bodong, Hindi Budoy!”

By: Tiffany Tan, ASP Board Secretary

“Alam nyo, walang masama kung iba ka o may kulang sayo o may kapansanan ka. Ang importante, tanggap mo kung sino ka at kung ano ang pwede mong magawa sa iba,” a quote from the just concluded tele-serye, “Budoy”.

Bodong and Mom Telay

ASP interviewed one of the member-moms of ASP Diliman Chapter, she is also the Chapter's VP for External Affairs, Ms. Estela Echano or known to us as Mommy Telay and her son, Andre Benjamin Gaban aka Bodong, a young teen with autism. He related that schoolmates will sometimes call him Budoy, and that he would quickly clarify that he is his own person, and not to be confused with the TV fictional character with special needs. “Ako Bodong, Hindi Budoy!”. Presently, Bodong studies in Jose Abad Santos Memorial School (JASMS) and is mainstreamed in grade 5.

Mom Telay believes children with autism have their own interests. She said it is up to the parents to help them explore what these interests are and provide avenues to develop their skills. She said these opportunities can be stepping stones towards independent living. Below are some practical parenting tips.

“Sinasali ko sya sa isang photography workshop, sa tulong ni sir John Chua at ASP National. Na-feature narin ang mga photos nya sa exhibit sa SM The Block. Nakapagvoice recital narin si Bodong ng “Ditei Moi,” isang French song mula sa South Pacific, sa tulong ni Teacher Greg de Leon.”

Andre Benjamin Gaban aka "Bodong"

Mom Telay says, like any other children, Bodong matured in the way he behaved toward others or related to other people. “His plans for their future include having a girlfriend and eventually marrying.” Mom Telay took this opportunity to teach him about being “pleasant” to women.

“Nagkaroon ng mga crush na 7 babae, so I taught him about personal hygiene, like how to use deodorant, facial cleanser, soap, perfumes and how to maintain one's health. I also explain to him about being a teen-ager and also answer his questions about sex.”

Aside from having crushes, Bodong has his share of bullies, but has learned to alert his teachers when he encounters them. “Sa school, natutong magsumbong si Bodong sa teacher kung siya ay binubully. Kamakailan, ikinuwento niya na may kumuha ng pera ang isang kaklase; mga pananakit ng mga classmates sa school at mga paraan ng pagbubully sa kanya. In fact, sinumbong niya sa mismong magulang ang ginagawa ng kaklaseng bully.”

Bodong has been seen accompanying his mother’s travels to Palawan, Western Visayas, Tacloban, Ifugao, Bicol, Olongapo and Pangasinan. Mom Telay used this opportunity to teach him about strangers and personal safety. “I also teach him how to protect himself, like when to say ‘That is not allowed’ to someone who might harass or hurt him physically.”

“Sabi ni Bodong, hindi siya Budoy, siya ay nag-iisang Bodong.” He has his own individuality and he enumerated the following: 1) magpaalam kung gagalawin ang gamit ko (ask for permission before touching or getting his personal items); 2) huwag akong kulitin at sisigawan (not to pester him or shout at him); 3) isa-isang utos lang; nakakalito pag maraming salita; (use simple instructions, not complex or compound sentences, it’s confusing) - which are basically what a regular teen-ager might ask from his parents.

“Like any typical teen-ager, they don't like to be scolded in front of other people. We should be patient in teaching our child with autism. There will come a time that all our efforts will be paid off,” reminded Mom Telay.

*****

Thank you to ASP Angel, Ms. Cathy Genovia, Bodong and Mom Telay for this article. If you have been inspired by this article, email us at autismphils@gmail.com.

To know more about ASP Diliman Chapter’s programs and services, contact Ms. Jo Palomares, ASP Diliman Chapter President, at (0922) 847-2776.

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Posted in: pers

A Special Collection: The Fashion Event

By Marivi Cabason, ASP Marikina Valley Chapter

A Special Collection is an outreach program of San Miguel Corporation as part of their Corporate Social Responsibility. They started it in 2010.

For SC 2012, they got participants from Cradle of Learners, Independent Living Learning Center, EM Castro Educational Foundation, Mandaluyong C.A.R.E.S – Project T.E.A.C.H., and a few other schools/institutions. The models they got are not slim, gorgeous models but teens with special needs: children with autism, with Down’s Syndrome, and Deaf. They chose as their beneficiary this year The Learning Center, a special school in Parañaque City that caters to the educational and therapy needs of special children.

The workshop ran from November to February, culminating in a fashion show on 02 March 2012. My son Victor Lorenzo was recommended for the program by the Principal of Cradle of Learners, Mr. Rimando Raña, along with one other student Patrick Josh Valisno. Vinz readily agreed although at that early stage, he was not really aware of what was going to happen. During the 3-month workshop, the kids were trained to walk with confidence, to pose at intervals, to show their best angle in photos, and to wear their clothes with aplomb. It was not an easy task for the organizers, dance instructors, designers, photographers and other staff, especially for Teacher Eleanor Enriquez who was coordinating everything from beginning to end. The kids were not always easy to handle. Teacher Eleanor, with the help of the staff, had the costumes designed, coordinated with sponsors Onesimus, Yabang Pinoy and Agos for the clothes to be worn by the kids, bought some of the barongs and other items, organized the measurements and fittings, gave advice on appropriate accessories and shoes, and was on top of all the training and practices which happened every Sunday afternoon.

Thank God for their patience! There were hitches, of course, including participants who would back out, or who would not cooperate.

Vinz himself, at one point, almost backed out, because he did not want to go every Sunday. I persuaded him to continue, agreeing that we will only go every other Sunday, except for the last 3 Sundays, when the practices will be more intensive. He asked if his siblings also participated in modeling in the past. I said that they each have their own talents. His eldest sister Amaris writes well and has published articles in various media. His second sister, Issa, has a good voice and joins singing groups in school. His older brother, Lean, is our artist and is often tapped for school projects. I told him that he was the only one who participated in modeling.

Although there were hitches, these were more than offset by the fun all the kids had, just being together, exchanging cellphone numbers, dancing to Waka Waka, or strutting their stuff like real ramp models. The parents watched with pride as, gradually, the kids overcame their awkwardness and gained confidence. Waiting at the sidelines for four hours each Sunday had its rewards!

The final show was held on March 2 at 7 pm in UP Bahay ng Alumni. In the two final practices on February 26 and March 1, the organizers ran the whole program, complete with costume changes and performances. That in itself indicated to us parents that the show was going to be a huge success, seeing as how the whole thing was handled so professionally. One could also sense the kids’ excitement as the big date drew near.

Vinz with his partner Jondra Gallo

Vinz Cabason

On the morning of the final show, Vinz revealed to me that it took a while for him to fall asleep the night before because he was quite nervous and shy. I assured him that he was doing very well, they had practiced many times, and he did all the things that the teachers and staff told him to do.

And indeed the big night was a tremendous success! The audience cheered and clapped heartily as the models came out in pairs, first wearing their animal print costumes, then their streetwear with accessories, their formal wear (elegant suits and cocktail dresses) and their Filipiniana wear (barongs and Filipina dress). No matter that some made mistakes or forgot the exit routes. There were crowd favorites, like Vicvic and his partner Angela who delighted the audience with their poses and wide smiles, AJ and his partner Jellene who showed confidence in modelling, Monique who stood out with her natural poise, Joshua and Maria who danced the Waka-waka with such gusto. Friends and relatives cheered for their own. Our own family, and some of Issa’s friends gave our all-out support for Vinz.

There were a lot of photo ops and Vinz had the opportunity to have photos taken with his friends in the SC group, as well as our guests who congratulated him.

It was on the whole a very enjoyable event. In the end, there was an opportunity to thank the organizers, sponsors and staff who made the whole event memorable for the kids and their families.

The event was also graced by ASP Vice President Peng So, Trustee Ging Viado, Executive Director Ranil Sorongon and her wife Ms. My. Our very ASP Dream Girls, Thara and Nica were also present at the event to entertain the audience with their heart warming songs.

After the event, I know that Vinz was very happy with his accomplishment and that he will never forget the experience.

*****

You can contact ASP Marikina Valley Chapter President Alex Cabason at (0939) 466-8665 or alexcabason@yahoo.com.

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Posted in: pers,special