From Dawn Till Dusk

Foreword: I have been longing to publish this a long time ago, but didn’t have enough of courage to do so. This post has been sitting in my drafts for a month or two, I think. But each day that I revise, the more I become hesitant. I thought that it’s best that I blog about this later. “Saka na lang when Nico’s really well”, that’s what I thought. But a very recent post of Noemi about her daughter M moved me so much that finally, I decided that this post has to make it in my Blog really soon. Thus, this post.

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Once upon a time the life of a Mom, you dream for your child. Perhaps any Mom out there would agree with me in saying that the moment we conceive our children, we started hoping and dreaming for them—that they’ll grew up into being someone we envision them to be.

But how does a Mother continue to dream for her child when she is faced with a daunting dilemma? A tight spot, an impasse, a worst fear that you knew is coming all along, but caught you still unprepared when reality hits you at a time expected. And when this happens, how do you cope? Me, I stopped dreaming. But only for a while…

A “Dash” of This and That
Over the last two months, I went through what I would call one of the toughest trials ever in my entire life being a mother. Nico was diagnosed to be at the borderline of the autism spectrum, the worsiest of all my fears that I finally came to confirm when we had him assessed last June 3. Borderline, as the doctor explains; meant he just had a “dash of it” and Nico is classified into the high functioning ones. “That’s why it’s called a spectrum of disorders. There are many hues and colors,” Nico’s doctor says. There’s those classified as red, maroons, and some very light red. Nico, according to her, is in the gray area. But she can see tiny dots of red colors to picture in at the wide spectrum. And worsiest fear, because I knew it was coming all along. There are signs from way back that got me think that maybe he is, yet I gave my son some more room to improve.

It’s no secret to everyone that Nico was preemie. Moreso, the hole in his heart which closed when he was six months old. Knowing this concerns, I knew he will be late in the milestones and developments that of any kid his age. And thankfully that though a bit late, he was able to catch up.   He however reached some milestones differently, like he learned sitting first before crawling. But nevertheless, I’m appeased because he eventually learned to walk even at the late of 1 year 3 months.

His Daddy, who was his companion back then in early mornings (because I go to work earlier and he waits for my Mom to arrive before he goes to his Office) he would often tell me that we have a supladitong anak. When he’s feeding Nico, he said the baby doesn’t make enough eye contact. He said Nico’s were just gazes. “Parang ang daming iniisip ng anak ko, at pag kakausapin ko sya, parang hindi kaagad sya lumilingon unless I call him twice or trice”, his Daddy says.

Then during those months too, Nico had episodes of head-banging when he ask for something we can’t understand, making him frustrated. I was alarmed. But then my usual researches through the BabyCenter.com calmed me as it says, head-banging happens to even normal kids but they’ll overcome it soon as they’ll learn to communicate. And after a while, when Nico’s Ate Ness came, (Nico was 1 year 5 months), she discovered how to comfort him, and so the head-banging sessions disappeared.

Soon enough, Nico was developing at a normal phase, doing and reaching milestones as other kids his age does. And what’s surprising, he knew his Alphabet and Numbers pretty soon. He discovered it on his own, with minimal coaching.

But this love for ABCs and 123s got us alarming. He was so addicted, he didn’t want any of those toys that kids of his age normally loves. Just the ABCs and 123s and we’ve provided tons of that-all forms and shapes and sizes. His interests are fixated in those things. And what’s so strange about his play was that he’s so often consistent with lining up objects, may it be toothpicks from the restaurant we ate, to notebooks, blocks, and so many others. We brought Nico to a developmental pedia but there were no definite conclusions. All she said was that, Nico maybe considered potentially-gifted. “He’s too young to be classified under the spectrum,” the doctor says.

Then at middle 2years old going 3, I was alarmed again because he wasn’t talking yet. But then when he turned 3, vocabulary pick up went fast. He started picking words, make them into phrases then sentences. From awa, then to ayaw, to ayaw na, ayoko na, ayoko na nyan at gusto ko yun—I was at ease again because he’s finally talking.

At 3.2, he started going to Nursery. His performance in worksheets in Science, Math and English were pretty impressive, he didn’t need any helping from me to review him days before the exams. But another alarming sign I learned when the Teacher told me during a one on one consultation that she’s having a hard time requesting Nico to settle down on his chair for no more than 5 minutes. He was always standing, and wanted to be in front of the class. Of course, the Teacher had to do a little of disciplining. She had Nico seated at back, beside the Teacher aide. Then, a quarter past, the Teacher reported to me a lot of improvement as far as this issue is concerned. Then, I’m relieved again. But then the Teacher told me again that she’s having a hard time calling Nico’s attention to listen that she has to do more prompting before he responds. The Teacher thought Nico wasn’t really interested in listening. Palinga linga daw kun saan ang anak ko, parang ang layo ng iniisip. But when it comes to tests and worksheets, the Teacher was always caught in awe because Nico got perfect scores. She’s so puzzled how could that be possible when Nico’s not really listening.

Whenever I asked Nico how was school, he wasn’t as enthusiastic to tell me. At one point, I even thought that maybe Nico wasn’t that ready for school. But then here goes the trend again, Nico improved on his listening skills according to the Teacher. And also, he used to be very very shy, he doesn’t want to mingle with people not even his classmates. But later, he started becoming sociable and friendly even just to a few. And towards the end of school year, he made us so proud. He was awarded. Truly our pride, I can’t help but relish how independent he has become and how sociable he has become.

At the beginning of summer though (March), we began to notice Nico was loosing his words. He was baby talking, sometimes babbling, repeating words like a parrot, and oftentimes not responding, and if he does, it was often out of context, not that meaningful.

I was so alarmed, I took the courage to schedule an appointment with a Neuro Developmental Pedia on recommendations of my first cousin whose son was diagnosed of global developmental delay. That was March then when I set an appointment. Pero ang haba ng pila. Finally, we were able to squeeze in an assessment June 3. Three hours passed, the moment the doctor confirmed everything of my worsiest fears, tears began falling in my eyes. Despite reassurances from the doctor that he is just at the borderline, it didn’t help at all.

From denial, to acceptance, to moving on, to healing
I was zombied for days, I was numb. I was in denial. I was so devastated. No words can ever best described how I was hurt, not even my husband. Kaya pala ganito sya, kaya pala ganoon sya. These were what’s in my mind during those zombied days. And never in a day I didn’t cry to tears and asked God: “Of all people, why my son?” “Isn’t the hole in the heart enough as a trial?”

Then I find myself grieving. I faced grief  for the dreams I have for my son. How I can anymore dream for my son when I reality says it can’t be?

But God was so good. He made me realize I need to accept and move on, for the sake of my son. I have to thank my husband for he was my source of strength when I was at my lowest point. He made me understand that God has his very purpose why everything had to happen this way. “The Lord gave us Nico because he knows that we are capable of giving him the most love and attention that he needs. He knew that we can still give more, just like the way we did when Nico had a hole in his heart” . I was at the Office that day he said that, and as I stared at the wallpaper of my PC (it was a photo my son smiling), I realized it’s time that I accept, it’s time that I move on.

And from then on, I moved on and find acceptance. I devoured for every information there is about his condition. What caused it? I don’t know, I am not sure. His being preemie? His former heart condition? The medicines he took when he was a baby? The MMR vaccine? The antibiotics? The television? The computer games? Is it genetic? And what about the dilemma in speaking? I’ve read a lot about regression, but not sure if this was true or is it the cause? Apologies for the crazy questions, but that’s just how crazy I was searching for the cause/s, which even science and medicine cannot determine yet.

What to expect? How to approach it? What to do to so that his behavior will improve? How do I get help? Where do I start?

Thank you for treasured friends
Thank you for good friends in the presence of Teacher Julie. I thank God that He led me to knowing her and of all places, it’s in the wide world of Blogsphere. The first time I told her about Nico’s condition, she didn’t questioned me at all. All that I felt is her sincerity and willingness to help me. At random times (I haven’t squeezed in a definite schedule for Nico’s assessment with a speech pathologist and occupational therapists), she was there to consistently remind me: “Feng, pagtyagaan nyo na yung Monday schedule, okay na rin yun”. I was so touched, I was so encouraged. I said to myself: kung ang ibang tao nga sobrang concerned, ako pa, na Nanay ng batang ito.

We secured an assessment with two specialists from the Center where Teacher Julie works and mind you, she didn’t recommended just like that. These specialists were the best in the Center. “Ay, kay Teacher D si Nico ha. Ayun, magaling yun. Very young, pero old soul”. That’s for the speech and for the working behavior, we had the best too. And I say this sincerely from my heart.

And say my sincerest thanks too to my Kumareng Michelle, Mitch and Thet and the rest of my Mommy friends (I won’t anymore mention your names, you know who you are) who were always here for me. I thank you all for your encouragement, they’re very uplifting, and I guess, I am just too blessed to have you all as my most-treasured friends.

Interventions through therapies complemented by the school and home
After the evaluation, Nico started going to therapy sessions for speech/language and occupation/working behavior since June 30. The programs for both therapies are held just once a week, and will run for six months. Each week that we go the Center, the more I am inspired and encouraged seeing Nico and other kids like him progressing. And each week that passed, the more I see big improvements in Nico.

It greatly helps that we strictly practice the therapies at home.  Because sure, therapies are there to help, but being able to practice what’s taught at therapy sessions in daily living matters even more. Everyday, we do a lot of floor time activities, less of TV time. Cutting with a scissor, doing pretend play, creating shapes with Play dough, coloring.  We also go outdoors.  We let him ride a bike, play hops catch with us, basketball with his Dad, and sometimes swimming. We’re also constantly exposing him with other children in the neighborhood to further develop his social interaction skills.

Nico during a speech/language therapy session with Teacher D

At the end of therapy sessions, his Teachers would always say ang laki ng improvement ng bata each week. I was even requesting that we increase the therapy sessions to three times a week but Teacher D, Nico’s speech therapist, would often tell me it’s no longer needed. Nico ’s doing really well and pretty fast than expected. A proof of that, I showed her a positive remark from Nico’s Teachers in school, whom I have to thank to because they, the school and the Teachers, are complementing the therapy programs for Nico.

It’s written on the parent-teacher communication notebook and it says: Dear Mommy Feng, Yes Mommy, we are doing that to Nico. And I also noticed that Nico’s interacting more now with his classmates than a few weeks ago.  Thanks po. Teacher Chie.

Now, Nico’s beginning to gain the words he lost, he’s starting to make meaningful sentences again, he started re-conversing again. What used to be just one or two words, it’s now extended to three words or a phrase or a sentence. Example, Nico and I are walking around the subdivision when he saw a dog under the car: “Mommy look oh, dog, natutulog sa ilalim ng car”.  Yes, utterances like that, we consider as small victories.

On occupational therapy, he’s struggling still, especially that he have to be prompted with one or two callings before he can accomplish what needs to be done. But Teacher N, his occupational therapist said, Nico’s very eager to learn. Most of the time when a task is asked to be done, he can’t seem to do it properly at first order. But given proper demonstration on how a task is done, he can finish the task correctly.

The thought to seek second opinion
In the midst of our therapies, a suggestion from Teacher N came up. That maybe, we can seek a second opinion because as he said, Nico was at the “most borderline” of the borderline.  On my part, I also thought of the same. I once told my Mom, I see a lot “me” in Nico. Very curious, but often silent and shy. Aloof most of the time, that many misunderstood.  I took the suggestion of Teacher N and requested for an appointment to the Neuro DevPed of my friend’s son. But as usual, the schedules are full. November 21 is the earliest possible available sked for us.  At any rate though, Hubby and I agreed to proceed with the therapies. Classified in the spectrum or not, we want Nico to be well and learn what needs to be learned.  As Teacher Julie stressed, therapy sessions are not just for special children. It’s a misconception that needs to be corrected. Children needing to develop their fine and gross motor skills, focus and attention, and among many other developmental milestones to perform better in school and function in society, therapies are also for them.

Hoping and dreaming for him again
These said, I have high hopes that Nico will overcome all his hurdles. Just like the miraculous healing of the hole in his heart.  I choose to believe that in this uncertain journey into the unknown, my son get back on his feet and be a living proof once more of God’s love. I just have to be there for him all throughout.

Now, I started re-dreaming again for my son, not to be the best lawyer or doctor or businessman there is in this world, but simply, just for him to live a normal and happy life. It’s weird for me to say this but maybe, I can already die the moment I am assured of a better future for Nico.

I don’t know for how long this journey will take us. But one I thing I’m most certain. I will always be here to shower him my unconditional love. Together, this will be our journey to defeat the unknown.