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.
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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 https://adultautismphil.wordpress.com for more information on A Special Place and AAAP. You may also e-mail firstname.lastname@example.org.