My Angel Nicolo

9 May

By : Melanie Sabino (The Philippine Star, May 8, 2012)
Manila, Philippines – My son Nicolo was born 11 years ago and he was a perfect baby. Always smiling and quiet, he hardly cried. His dad is a quiet man so when his grandmother said something was “wrong” with my son because he didn’t interact with them, I thought it was because he just wasn’t as sociable like his dad.
When his pediatrician, a cousin, said that Nicolo showed signs of autism and he needed to be tested, I took it well. No major reactions and no anxiety. I thought it was just one of those tests. He recently had a hearing test — he didn’t look when we called his name — and there was no auditory problem.
He was two years old and still spoke in gibberish, but then my eldest didn’t speak till she was three either, so it was fine. I said to myself, some kids just develop later than others. My Nicolo walked at nine months! This was no big deal.
The waiting list to see the lone development pediatrician in Bacolod was eight months, so we brought Nicolo to Dr. Joselyn Eusebio at St. Luke’s Hospital. By then, I knew my son was different.
His pedia recommended we give him Benadryl as he was so hyper and maybe more so on the plane. It didn’t work. He wouldn’t sit still and ran up and down the aisle the whole flight.
Dr. Eusebio diagnosed Nicolo with autism. My husband said later he wanted to hit his head on the wall. I was calm. I was relieved it wasn’t mental retardation. At that time, though I had read up on autism, I didn’t know that more often than not, mental retardation was present. Sometimes ignorance can be bliss.
As soon as I heard autism, I went into mom overdrive. I researched, bought books, searched the Net, called doctors. I saw five doctors in one week. It was dismal. The books described the condition but didn’t have one definite working therapy, all sources and resources were not available locally, and the doctors all told me one thing: There is no cure, thus, it’s hopeless.
I was depressed for a whole minute and then I was mad and revved up some more. Those doctors didn’t know what they were talking about. I was talking to the wrong professionals. The books and online articles may be all foreign, but the condition was not; there must be other parents like me here. And then it began — the barrage of people who suddenly “heard” and wanted to help.
A friend from my high school I hadn’t talked to for years called me up and introduced me to her group of parents. She heard about Nicolo from my mother-in-law who is a good friend of her mom’s. I joined their support group online. I was right, those doctors didn’t know anything.
The group was a goldmine of information! I realized then what I know now: Because autism is a fairly “new” condition, not much is known about it, but because our kids can’t wait, we do our own research. Maternal instinct was in full throttle. Moms composed 90 percent of the groups. It is a mother-powered community.
Within a month, I was besieged by calls from parents of children with Autism Spectrum Disorder (ASD). All they wanted to do was help. It was unending, heartwarming, and blessed. God is good. One of my oldest friends had a cousin who had an autistic son. She had her own center! It was one of the first and the best centers in Manila. It was difficult to get in, the waiting list was long, but Nicolo was able to start with them two months after diagnosis. I asked to be trained on how to work with my son and they agreed. We stayed the whole summer.
A week after we got back home, a therapist specially trained in Applied Behavior Analysis (ABA) had returned from a year’s training in the States. He just opened his own center. Nicolo was one of his first students.
My high school classmate’s younger sister was a speech therapist graduated from University of Texas in Austin. I had called my friend two months before her sister even arrived in Bacolod. Nicolo was going to be her sister’s first client as soon as her speech center opened.
I enrolled Nicolo in a school for special kids, but I pulled him out after a month. Someone told me about a former teacher who opened her own school and I enrolled Nicolo with her. Ms. May and I have been friends ever since.
I put Nicolo on the gluten-free casein-free diet (GFCF diet) when only a handful of parents were doing it. He has been on it for almost seven years now. His hyperactivity lessened significantly with the diet. He has been on biomedical therapy for almost the same number of years. I also started him on the Methyl-B12 (cobalamin) or MB12. In less than a month, his verbal skills improved drastically. His vocabulary increased immensely and he spoke spontaneously. I have a video of Nicolo singing a popular song when he hardly spoke a few weeks before. It brought me to tears. It was amazing!
Our cook and the staff at home know what ingredients he cannot eat, so do his siblings even if they began passing him a candy or two last Christmas. Everyone knows how and when to prompt him. He used to crawl under the table when there were more than five people around. Now, he is a very sociable little boy. His siblings, all four of them, introduce him to their friends.
For parents with a child with autism I advise lots of research, a solid support group and nonstop education. Prayers are important also — for your peace of mind and your children’s future. I believe God has planned all of this for me. I have a cousin with Down Syndrome who is the same age as I. I had always thought that my aunt was blessed to have an angel living with her. I had always prayed to God for an angel for my family, and He answered my prayer. He gave us Nicolo. God gives me what we pray for, just not in the way we expect, but it is always perfect. Every time, the surprise is always a joy.
A few years back, I wondered about how to put up a home for children and adults with autism. I recently read about A Special Place, the first residential community in the country for adults with autism. Perfect timing! My two older daughters are in college in Manila and I have some free time. Maybe a new project? I contacted Dr. Lirio Covey, president of the Association for Adults with Autism Philippines (AAAP), and met up with the group. This is exactly what I prayed for.

Figure 1 : A family picture with our orangutan friends Papa, Manang Sarah, Manong Joshua, Manang Erica, Mama, Nicolo, and Manang Maegan.

Figure 2 : Born 11 years ago, my son Nicolo was a perfect baby who hardly cried.

Figure 3 : Nicolo and Manong Joshua get a seal kiss at the Singapore Zoo

God has everything planned. I just go with His flow. God is good all the time.
* * *
A Special Place is the flagship project of the Association for Adults with Autism Philippines (AAA), 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. Visit http://adultautismphil.wordpress.com for more information on A Special Place and AAAP. You may also e-mail adultautismphil@gmail.com.

My Angel Nicolo

9 May

AAAP’s Very Own Vico Cham Draws CHED Secretary Patricia Licuanan

5 Apr

AAAP’s Resident PWA Vico Cham draws Commission on Higher Education Secretary Patricia Licuanan in his laptop using a program called Paint during the launching of “A Special Place” at the Filipinas Heritage Library (FHL), Makati Avenue last February 20, 2012.

Figure 1 : Vico Cham draws Patricia Licuanan while his parents Jun (standing), Cathy (standing) and Patricia (seated) look on….
Figure 2 : Masterpiece Artwork – Patricia Licuanan

“A Special Place” is the Philippines first residential community for adults with autism…

Autism Prevalence Rises to 1 in 88

30 Mar

The following remarks were delivered by Mark Roithmayr, president of Autism Speaks, at the Centers for Disease Control in Atlanta on March 29, 2011. You can follow him on Twitter @markroithmayr.

Merriam-Webster defines the word epidemic as “Excessively prevalent. Affecting a disproportionately large number of individuals within a population, community or region at the same time.”

With the new Centers for Disease Control and Prevention numbers now showing that 1 in 88 children in the United States are being diagnosed with autism – nearly a doubling of the prevalence since the CDC began tracking these numbers – autism can now officially be declared an epidemic in the United States.

We are dealing with a national emergency that is in need of a national strategy. At 1 in 88, we now have over 1 million children directly affected by autism. According to a newly released study the annual cost of autism in the United States is a staggering $126 billion annually, more than tripling the cost analysis from six years ago.

Behind all these statistics are real families, real individuals struggling each and every day. Some with autism are struggling to find satisfying jobs where they can productively use their talents and abilities. Others with autism have extremely complicated medical and social challenges. Make no mistake though, wherever one falls on the spectrum, all with autism struggle each and every day. And it is clearly time we, as a caring society, commit to a National Strategy. A comprehensive National Strategy that substantially increases all efforts to date. A call to action that:

  • Funds more basic science uncovering the genetic underpinnings of autism.
  • Funds more environmental research detecting the causes of autism.
  • Accelerates the funding and development of effective medicines and treatments.
  • Commits to a strategy where all children with autism from every background are diagnosed no later than 18 months of age.
  • Commits to a National Training Corps recruiting more therapists and service providers as well as specially trained teachers and teacher assistants into the field.
  • We also need to address the growing issue of adults with autism specifically around continuing education, employment, housing/residential living and community integration. Here too, we need a focus on a National Training Corps to recruit and train professionals to work with our adults.

As the nation’s leading science and advocacy organization, Autism Speaks today calls on the entire nation to commit to this National Strategy, a true public-private partnership:

  • From President Obama to each of the Republican candidates for President to all Members of Congress.

We desperately need further commitments from….

  • The CDC and Dr. Frieden whose very funding of this prevalence study is in jeopardy of being cut going forward.
  • Secretary Sebelius and the Department of Health and Human Services.
  • Dr. Francis Collins and the National Institutes of Health.

And it is not the federal government alone we call on. We need the private sector as well as state and local governments to be part of this National Strategy:

  • Right now insurance companies and the majority of self-funded plans under ERISA discriminate against families with autism denying reimbursement for the basic, evidenced based services that can often dramatically improve the quality of life for their children with autism.
  • There are pharmaceutical companies who can speed the process of effective medicines for people living with autism to improve communication, socialization and behavior, the core symptoms of autism.
  • We need companies across all industries to commit to hiring the 74% of adults with autism who believe they have the potential to be employed if just given the opportunity.
  • And we need employers of all parents who have children with autism to become much, more family friendly as way too many mothers of children with autism have had to stop out of their careers to be able to care for their loved ones because their work environments could not find a way to accommodate their schedules.
  • We need local school systems to deliver individualized and quality driven plans to meet autism’s ever growing demand for appropriate special education services.
  • We need faith based and community based organizations who can provide respite services for parents and caregivers as well as recreational and community integration opportunities for people with autism.
  • And the list goes on to include siblings, grandparents, aunts, uncles, friends and neighbors. At 1 in 88, we are now hard pressed as a nation to find anyone who is not touched by autism.

Ultimately the question we need to ask ourselves is why over the last two decades has there been such a tremendous increase in autism? Dr. Peter Bearman of Columbia University was funded by the NIH to answer this very question. His findings have revealed that the increase in prevalence is only partly explained by a broadening of the diagnosis, improved detection, and more awareness. A large portion of the increase some 50% remains unexplained. That is why we must aggressively fund research, including the critical study of potential environmental factors. We need to find the answers.

At 1 in 88, let me be clear, the United States is experiencing an autism epidemic.

This is a national emergency. We need a national strategy.

For more on the new autism prevalence numbers released by the CDC, visit our prevalence page.

Sincerely,
Mark Roithmayr
President, Autism Speaks

Autism Speaks contact information:
Email Address: editors

Autism Speaks Logo.jpg

AAAP Raise Funds for 1st Residential Community for Adults with Autism in the Philippines

23 Mar

AAAP Raise Funds for 1st Residential Community for Adults with Autism in the Philippines

Residential communities and villages for adults with autism are established in various countries around the world, such as the United States, Canada, the United Kingdom, Germany, South Africa, Botswana, India and South Korea, primarily due to concerns of parents on the continuing care of their children as they age. Examples are the Camphill Communities, Homes Caring for Autism, The National Autistic Society residential services, and Heartspring.

In the local context, the Association for Adults with Autism Philippines (AAAP), a non-stock, non-profit association composed of parents, educators, and other advocates for persons with autism, is undertaking the construction of the first residential community for adults with autism in the country, called “A Special Place”.

AAAP President Lirio Covey, whose son, Mikey, has been living for 10 years in a group home in Westchester, New York, explains, “Group home residence for persons with autism is a not a novel concept. These programs have thrived throughout the world, in Europe and in the US, even in places in the Middle East and Asia. Group residences for adults with autism have been shown to benefit its residents. Their family members benefit, too. In many ways, the larger society benefits as well.”

The organization considered various models in choosing the right home group that will fit in Philippine society and culture. “In the US, the predominant model is the single group home run by private individuals or an umbrella agency. Residents of these homes are brought to their various day activities by vehicle transport. With the scarcity of appropriate facilities in most areas in the Philippines, including Manila, and the notorious traffic situation, we didn’t think that model would work here,” continues Covey.

In a fundraising event launching “A Special Place”, Covey presented that AAAP opted for the farmstead model, which is the most popular type in Europe and also exists in the US. “This model, necessarily located in a large area, comprises several individual homes all located within the same campus or setting. In each home, residents have their own bedrooms, their own baths; they share a kitchen, a dining room and a living room. Within the farmstead are areas for productive work, exercise, socialization, and recreation. For the Philippine setting, we think the farmstead model would work best.”

A model that integrates residential and vocational training program for autistic adults was developed by Sybil Elgar in the United Kingdom in 1976.

After considering several possible sites for this residential community, the group has identified a 1- to 2-hectare property outside of Lipa City. Officers of AAAP pool their personal funds to purchase the lot where “A Special Place” will soon rise.

“Our small group of pioneer parents and founding friends will contribute towards a seed fund, but we know that our pooled contributions will be far from adequate to cover the initial and on-going outlays. To that end, we are mounting a Capital Campaign to ensure the viability of our timetable and fundraising plan,” says Covey. Being a first in the country, AAAP foresees the project as a milestone where various companies, organizations, and individuals can help achieve.

Covey closed her presentation with an appeal, “We ask you and the larger Filipino public to take pride in helping us build ‘A Special Place’. Help us generously, with your heart. Lead us and speak about us to others who can help. Together, we will make history. We will change people’s lives.”

# # #

The Association for Adults with Autism, Philippines (AAAP) is 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. Visit http://adultautismphil.wordpress.com for more details.

Figures A to D are the drawings and perspectives of “A Special Place” by architecture student Carlos Cham, whose younger brother, Vico, is an autistic adult. Their parents, Jun and Cathy Cham, are architects and are active members of AAAP.

A Special Place for Adults with Autism Launched

16 Mar

A Special Place for Adults with Autism Launched

“As a parent, you will do everything you can to make your child independent,” broadcast journalist Karen Davila shared during the launch of A Special Place, a project of the Association for Adults with Autism Philippines (AAAP) at the Filipinas Heritage Library.

Davila, who gave the opening remarks during the launch, talked about her son, David, diagnosed at the age of three to have Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS), or having some behaviors seen in autism but not necessarily having Autistic Disorder. David, now 10 years old, celebrated his birthday on the same day of the launch.

“When you have a child with autism, parenting becomes a whole new ballgame,” Davila added, to which many parents of persons with autism agreed. Davila learned of AAAP’s initiative to build A Special Place, a residential community for individuals with autism through the organization’s president, Dr. Lirio Sobrevinas Covey, when they have been exchanging mails about the project while Covey was still in the US.

Dr. Covey is a psychologist and professor of Clinical Psychology and a Research Scientist at the Columbia University Medical Center in New York. She is also parent to 33 year-old Mikey, who is living in a group home in Westchester, New York for 10 years.

“Before AAAP, we were strangers to one another. We came together in AAAP, have become caring friends, bonded by a common cause – you might say – fear. What will happen to our charges when their parents and caregivers are no longer here? Our goal is to build a nurturing environment where these adults with autism can grow – safely, productively, with their peers, and independently of their original families,” says Dr. Covey.

AAAP Vice President Catherine Cham was a proud parent during the launch as his son Vico, 20 years old, sketched on-the-spot individuals who graced the event, including Davila, while Macky Palomares played the piano. Vico’s older brother, Carlos, a graduating architect student, presented his perspectives of A Special Place and its amenities as part of the program. “This is a labor of love,” remarks Carlos Cham.

The organization has identified a 1-2 hectare property outside of Lipa City. “The site fulfils the basic criteria that we had planned for a cool environment, not necessitating air conditioning, not flood-prone, and close to a metropolitan area which would have facilities for medical care, training centers for staff and residents who can work outside of the group home premises,” according to Dr. Covey.

A Special Place will consist of six individual houses, one building for staff and visitors’ quarters, and another building for administration, the library, and medical facilities. Residents will be adults who receive the diagnosis of autism, as certified by a clinical team composed of a neurologist, a psychiatrist, and a psychologist.

For more information on A Special Place and AAAP, contact Carissa Villacorta at +639175955480 or send an email to adultautismphil.

# # #

The Association for Adults with Autism, Philippines (AAAP) is 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. Visit http://adultautismphil.wordpress.com for more details.

Figure A : Award-winning broadcast journalist Karen Davila shared about her experience as a parent of a child with autism.

Figure B : Macky Palomares played the national anthem while guests look on.

Figure C : Actress and beauty queen Gloria Diaz showed her support at the launch. With her in photo is Ray Altarejos.

Figure D : AAAP Vice President Cathy Cham with guest Tweetie de Leon.

Figure E : AAAP President Lirio Covey presented the concept of A Special Place.

AAAP to Build First Residential Community for Adults with Autism

9 Mar

It is the dream of every parent of children with autism to settle their loved ones, when they become adults, in a safe and secure environment that will provide long-term care for persons with autism. With this vision in mind, The Association for Adults with Autism, Philippines (AAAP) came up with a flagship project, A Special Place, the first residential community in the country to care for these persons with special needs.

To realize this project, AAAP featured paintings by adults with autism at the Reading Room of Filipinas Heritage Library in Makati City last February 20 for a silent auction. Young artists Matthew Aragon, Vico Cham and Andrei Macapagal donated their artworks for the cause.

Corporate representatives and guests attended the art auction in support to AAAP’s A Special Place project. Broadcast journalist Karen Davila and other advocates for the care of persons with autism, were among the speakers at the launch.

The fundraising event was held to help construct A Special Place which will initially consist of six individual homes located within the same campus with six residents and house parents assigned per unit. The residents will receive full supervision and care. The facility will be built in a location south of Manila, with a cool environment that will provide “nature therapy”, yet still relatively accessible to basic services.

“Our focus now is to raise enough funds to make this dream a reality especially now that more and more Filipinos are diagnosed with autism. We thought of A Special Place because, as parents, it is a reality we face that we will eventually grow old and, thus, have to ensure the future of our offspring who have autism. We’ll not always be here for our children and we believe it’s high time to have a facility here in the country that specifically caters to the needs of adults with autism, a place where they can enjoy a secure, independent, and comfortable life,” said Lirio Sobreviñas-Covey, President of AAAP. Covey, a Professor of Clinical Psychology and Senior Research Scientist at Columbia University in New York, is a mother to 33-year old Mikey, an adult with autism who now lives in a residential community in New York.

For more information on A Special Place and AAAP, contact Carissa Villacorta at +639175955480 or send an email to adultautismphil.

# # #

The Association for Adults with Autism, Philippines (AAAP) is 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. Visit http://adultautismphil.wordpress.com for more details.

Figure 1 (L-R) Enviro Board Managing Director Joshua Mosshart, Karen Davila, Enviro Board Co-Chairman Glenn Camp, and Gloria Caoile.

Figure 2 Vico Cham draws Commission on Higher Education (CHED) Chair Patricia Licuanan.

Figure 3 AAAP President Lirio Covey presented the concept of A Special Place.

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