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

20 Responses to “My Angel Nicolo”

  1. alma gonzales cruz 10 May 2012 at 05:12 #

    Dear Ms Melanie Sabino, I’m also a mother of a 20 year old autistic. He attended special school for autistic when he was 4 – 9 years of age but to due meager income, we were not able to send him for a continued education.. he now displays very unwanted behaviors
    like turning off lights, tv and fans. we live in a totally “black nights and fan-less, tv less house”. when we bring him to malls he seems to enjoy for a while only and heads to go home. But he loves music. I’m so depressed that i don’t know what to do now.i feel so guilty that i cry at night when i could not let him go to sleep early. He usually sleeps at 2 in the morning.Can you please help me on my situation.. thank you so much and God bless.

    • Melanie Sabino 28 May 2012 at 10:38 #

      hello alma. i’m sorry for the delay. i did not know about your email until this moment. i am going out of town tmrw till the weekend. i will contact you then. God bless.

      • alma gonzales cruz 29 May 2012 at 04:16 #

        Peace! here is my mobile# 09083112398; my office # 2831181. so eager to hear from you. God bless

    • Lirio S Covey 2 June 2012 at 02:00 #

      Dear Alma,

      I am Lirio, mother of Mikey, a person with autism who is now 33 years old. You will find my experience living and raising him in one of the earlier entries on this website. The article is “Living with Autism” , it was published last June 25, 2011, almost a year now, in the Sunday Magazine of the Philippine Daily Inquirer.

      Your experience with your son is not strange at all to me, and I completely understand how you feel. Mikey has been living in a group home with 5 other adults males for 10 years now.

      About two weekends a month, we take him home to stay with us overnight. Many of his behaviors as a younger person living with home have continued till now.

      Mikey can have many moments when he insists on his being able to do certain things, just as you are describing about your son. For instance, when I am driving with him and I put down the sun visor in the car to avoid sun glare, he has reacted by putting it back up, even when I told him the sun was bothering my vision and my driving. Other occasion – when it is time to go to sleep and he has to vacate the play room, he will leave the room to go to his bedroom but will refuse to turn the lights off. (We turn the lights off later, when he is asleep. I think he knows that we do that.). I can cite many other examples of his insisting on doing certain things his way that can be frustrating to no end. Often, just complying with my telling him that its time “to go to sleep now” takes a long time.

      I have coped with moments similar to those you describe with your son in this way.

      1. I try to understand the reason for the behavior. Most often, if not always, it is his attempt to control his environment. He feels such little control that he takes advantage of moments like turning off the light etc. Not wanting to sleep yet is somewhat a control issue too, but another reason is that he is still looking for a moment of gratification, a fun moment, and he feels the day is not over until that moment has come.
      So this is what I try to do…..I try to have help him have a positive, enjoyable, gratifying experience. In our case, it can be just spending a good amount of time just sitting with him, reading him a book, coloring a book, or watching a movie (on CD or on TV) that he really likes. When this happens, it seems to calm him down quite a bit (not usually enough, though).

      About the control issue, I find a way to enable him to control something, or make a choice. The more occasions that he can feel he is making a choice, the better, since this increases his sense of having control.

      2. About the light – how about introducing a fun activity when it is dark, and then make him realize that that activity can be done only with light on. Like a jigsaw puzzle, or a coloring project. Then let him turn on the light himself (he controls that). maybe start with the light from a table
      lamp.

      Try those suggestions, slowly. One at a time. Pick your battles. Some behaviors we have to accept some times, but one at a time, we can try to change.

      And pray for him and for you. Incidentally, I have found that saying his prayers at bedtime helps Mikey accept going to sleep.

      Does your son like his baths? Mikey doesn’t but I tell him that I will give him a foot massage with lotion after his bath. That is always an incentive.

      Good luck. My prayers for you and your son,

      Lirio Sobrevinas-Covey, Ph.D.
      President
      Association for Adults with Autism, Philippines.

    • Lirio S Covey 2 June 2012 at 03:55 #

      What is your e-mail address, Alma?

      Lirio

      • alma gonzales cruz 4 June 2012 at 08:52 #

        Dear Lirio,

        Thank you so much for sharing me your experiences with your son Mickey. I appreciate it very much. Somehow I’m relieved of my situation. After reading the article “My Angel Nicolo” I got interested in Autism Nutrition because my son Mikko became a picky eater making him looking malnourished.I was afraid giving him multivitamins thinking it will make him more hyperactive. Further he is under medication for his seizures attacks. After learning some vitamins will be of help to autistic children, without getting the prescription from a doctor, I now give him b12, centrum multivitamins, fish oil and virgin coconut oil once a day. I also stopped giving him milk. We don’t see anymore a developmental pediatrician, only a neurologist for his epilepsy. Will it be of great benefit to see one at this point?

        During the nights when my husband and i still can sleep with him , we say our night prayers and give our goodnight kisses. He seemed to be compliant then.But now I can’t even stay in his room anymore and he settles to be alone. He now prefers to be sleeping with his kuya. My husband has his authority over him before but not anymore. when he sees me and his dad or his kuya talking , he tends to be attention seeking. He pulls me away from them. He also changes his shirts and shorts most of the time even wearing then on wrong sides. But he loves taking a bath and brushing his teeth.
        When he complies to simple command; behaves in some occasions; these are already a big joy to me. We do the demand reward approach.
        I am hoping and praying hard to win this battle. God be with me…
        God bless.
        Alma Cruz

  2. Melanie 6 June 2012 at 00:10 #

    Hello Alma. I texted you my nos. If you still wan to talk about biomeds, diet, anything at all, I’m here. 🙂

    • Reich 3 August 2012 at 23:28 #

      this brought back memories. thank you for sharing; and I’m glad I found this site.

      • Melanie G. Sabino 14 September 2016 at 23:11 #

        Please make an appt with Dr. Maricar Alejano. PM me on fb after you have called her office.

  3. Osvaldo Wedige 13 November 2012 at 08:43 #

    The best thing is of course to know which vitamins you are difficient from and supplement those but people would usually take multivitamins because it is easier..

    Take a peek at our own web-site too
    http://www.healthmedicinelab.com/pain-behind-eye/

  4. mommy mel 13 March 2015 at 07:22 #

    Hello Mommy Melanie, Im also a mom of asd child, may i know what is the exact brand and dosage of methyl b12? thanks in advance.

  5. Ann 16 April 2015 at 20:07 #

    HI Ms Melanie! Thank you for sharing your experience. I have a 15 month old son , he was born prematurely and with low birth weight. He was an active baby, always smiles and very sweet. He learned to stand and crawl around 11 months. He dont know how to walk by himself until now, and if he walks with my support, he walks on tiptoes. Lately I’ve noticed that he always flaps his arms and rocks himself when he watches nursery rhymes, loves to check one particular book, does not make eye contact often and doesn’t play with kids his age but rather loves to play with older cousins ( 7 years old). He is not hyperactive, on the contrary he is quiet and loves to cuddle. He sometimes babbles mama, didi, papa, indi but when I teach him how to speak, he doesn’t look at me and imitate me. He sometimes responds when we call his name. I’ve read in the internet that maybe he is showing signs of autism. He is my firstborn and I want to help him as early as now. We are from Bacolod. Can you pls give me any advice on what I should do and any person I can contact to help my child. Thank you.

    • Mark 7 September 2015 at 15:34 #

      Dear maam melanie. Sana po mabigyan nyo po ako ng advice kung ano po dapat gawin ko sa aking 3y/o son. He is diagnosed with autism spectrum disorder. My wife and i brought him to theraphy centers up to now and parang walang progress. I saw a light of hope when i red this article. Sana po ay mabigyan nyo ako ng advice kung ano dapat gawin namin sa aming anak.. -mark from bukidnon. Maraming salamat po

    • Melanie G. Sabino 14 September 2016 at 23:12 #

      Please make an appt with Dr. Maricar Alejano at MAB, Bacolod. Then PM me on fb after you have called her office.

    • Melanie G. Sabino 14 September 2016 at 23:14 #

      Please make an appt with Dr. Maricar Alejano at MAB, Bacolod. Then PM me on fb after you have called her office. If your child id already diagnosed, PM me and we can talk. I am not a medical doctor and I can only give advice according to my experiences with my son. I can also direct you to other professionals here in Bacolod.

    • Melanie G. Sabino 14 September 2016 at 23:15 #

      Please make an appt with Dr. Maricar Alejano at MAB, Bacolod. Then PM me on fb after you have called her office. If your child id already diagnosed, PM me and we can talk. I am not a medical doctor and I can only give advice according to my experiences with my son. I can also direct you to other professionals here in Bacolod.

  6. Kevin Leonidas 14 September 2016 at 18:08 #

    Hi Ms. Melanie,, I am actually looking for a doctor to check my daughter also here in Bacolod. We already have a schedule for the lone doctor here in Bacolod, but it will be April of next year. Do you have any idea if there is someone that we can ask for help?

    • Melanie G. Sabino 14 September 2016 at 23:12 #

      Please make an appt with Dr. Maricar Alejano at MAB, Bacolod. Then PM me on fb after you have called her office.

    • Melanie G. Sabino 14 September 2016 at 23:27 #

      I am such a newbie on social media.  I don’t know if I’m even replying to the right people.  They can just PM me on fb or on my NAPPA FB PAGE, of which I’m the administrator anyway.  It will be so much easier for all of us.  I have instagram and twitter accounts which I don’t even know how to post on.  Why people follow me I have no idea.  Hahahaha.   Melanie G. Sabino Negros Alliance of Parents & Professionalsfor Autism (NAPPA)Advocate. Educate. Support.             Share!  Advo-care!

      From: AAAP Today To: mama_works@yahoo.com Sent: Thursday, September 15, 2016 2:08 AM Subject: [New comment] My Angel Nicolo #yiv2359795520 a:hover {color:red;}#yiv2359795520 a {text-decoration:none;color:#0088cc;}#yiv2359795520 a.yiv2359795520primaryactionlink:link, #yiv2359795520 a.yiv2359795520primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv2359795520 a.yiv2359795520primaryactionlink:hover, #yiv2359795520 a.yiv2359795520primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv2359795520 WordPress.com Kevin Leonidas commented: “Hi Ms. Melanie,, I am actually looking for a doctor to check my daughter also here in Bacolod. We already have a schedule for the lone doctor here in Bacolod, but it will be April of next year. Do you have any idea if there is someone that we can ask for” | |

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