Sunday, July 22, 2012

Advocacy to Help Moms of Children with ASD - Reason Why this Blog is Up...

06.01.2012 -  We headed to The Medical City - Center of Developmental Pediatrics.  Seraphim was almost 18 months then.  We decided to have him checked because we have noticed unusual things that he would do.  He would not look at us in an instant his name is called.  He would ignore us when we were giving him instructions and he cannot utter intelligible words yet at the time.  
According to "a year and a half, most children speak a dozen words (or more) clearly. Besides "Mama" and "Dada," favorite words include "bye-bye," "milk," "cookie," "car," "oh!," and "my."  
     As parents, we are aware that children have different developmental pace.  Still, we were a bit concerned. So we followed our instinct and have him assessed for our peace of mind.  Going to the center, Seraphim was his usual playful self. Playing in the car to pass the time. Trying to grab the steering wheel from his dad when he got bored and reading/browsing thru his books to entertain himself.  
     When we arrived at the CDP, we waited for a while because we came in a bit early.  Jephi was playing and conquering the center.  He was so comfortable going around.   He was babbling non-stop, squeeling and laughing while running around. While he was at it, we were given "long questionnaires" as part of the Developmental Assessment. My husband and I tried to answer them to the best we could remember about our child.
    After a while, Pedia came out and we were ushered inside a private room where the actual assessment was taken.  Jephi followed us like a "young man" would.  And even closed the door behind us. Made the doctor smile :)
    The questionnaires were discussed while Jephi was playing with some of the toys the doctor put on the table.  She asked the questions again verbally. Reiterated and confirm some answers.  Then explained to us that she needs to discuss and measure the answers with a Developmental Pedia.  We were asked to come back for the results after a week. We were nonchalant for a week. 

06.08.2012 - We went back, this time without Seraphim.  Just like the last time, we were ushered at the same room.  This time, Pedia had enough introductions before she started discussing the results.  I sensed something is not right already. It was a long explanation but what gotten most of my attention was when she said: "he failed all parts of assessment - PEDS, M-CHAT, etc.etc."   
     How could that be? My mind said. But I just kept my cool and listened intently - because we were talking about my son here. She mentioned about his failure in these areas could be "red flags" to ASD - Autism Spectrum Disorder.   The Pedia said that "this is just an assessment and is not absolute until after so many tests.  Children develop differently and maybe we need some modifications in the way we are raising Jephi.  Also, he is too young and it takes  a long process and series of screenings before any doctor could say that he is one."  
     That day, we just took things in stride.  As an informed and exposed couple, we know that there were a lot of things to consider.  The assessment is an eye-opener, as the doctor said.  We could only agree.  
a. It could be too much TV(we exposed him to TV as early as 9 months);
b. It could be because he had seldom interact with other children (He was inside the house most of the time. The only people he was exposed to most often are us, my parents and his nanny for almost 18-months);
c. It could be Information Overload (because we downloaded nursery videos and made him watch all the time, almost all his toys are educational and we talk to him in bilingual manner.)
     We are guilty! As hands-on parents as we are, the best that we thought we know of, did not come out as the best for our son's development.  We were overprotective and over-indulged, and we have to face the consequence.  He was referred to a Developmental Pediatrician for another screening after 2 months.  Before then, we were advised to have a hearing test (Otoacoustic Emission Test) first to rule out the possibility of hearing loss or hearing disorder. We were also asked to attend Language and Behavior Classes to be able to help him improve on his speech.  
     First things first, we need to deal with people he interacts most of the time - us, my parents, his nanny.  My husband and I agreed that we will inform them that he has delay in speech and he needs help to improve on that area but we will not discuss about the details of the results.  We do not want labels to be thrown at Jephi especially because it was not even certain.  Like all parents, we aim to help and protect our son to the best of our ability. It's not that they will not understand, but in a hometown like ours, a label is a label.  We wouldn't want our son to be treated any other way.

06.09.12 - Seraphim's caregiving modifications started.  First NO TV day. I don't know if it was difficult for Jephi but it surely was for the nanny, whose only form of diversion to avoid getting tired while taking care of my boy is to peek into TV once in a while.  It was also the day when he went out and play.  Day passed and he survived with flying colors. No retaliation. Slept well because he did not see animated objects on TV.  He was totally spent due to playing.  He was  parallel playing at first.  Not minding other kids.  Just going around and exploring his "new environment".  
     When he started on what we so-called "therapy", my evenings would be about research on ASD - signs, symptoms and how a child would be ASD.  I read about ASD endlessly.  Nights went by so fast and somehow take its toll on my health - physically and psychologically. I became addicted to know how to go about helping my son improve his speech and at the same time study the symptoms if those were really manifesting on my son.  Interests became obsession, and obsession became paranoia.  Until I find myself getting tired of the subject already.
"I must admit, there's a part of me that would always say that he does not have ASD.  Sure he isn't.  How could it be when he is so cuddly, warm and affectionate to us. He loves to be played with, embraced, kissed and read to?"
     The first five days was a killer. By reading non-stop day and night, I've learned tons of things about ASD. I went from so interested, to cold feet, to "I-want-to-try-a-different-approach", to "I am getting exhausted with all these information!"  It was a roller-coaster of emotions. He is not there yet, I know.  It's just that my maternal heart just couldn't resist to find advance ways  and answers to my becoming endless questions.   

In search for answers during the first few days, I stumble upon these links:
1. Autism Symptoms and Early Signs

Early signs of autism in babies and toddlers

  • Doesn’t make eye contact (e.g. look at you when being fed).
  • Doesn't smile when smiled at.
  • Doesn't respond to his or her name or to the sound of a familiar voice.
  • Doesn’t follow objects visually.
  • Doesn't point or wave goodbye or use other gestures to communicate.
  • Doesn’t follow the gesture when you point things out.
  • Doesn’t make noises to get your attention.
  • Doesn’t initiate or respond to cuddling.
  • Doesn’t imitate your movements and facial expressions.
  • Doesn’t reach out to be picked up.
  • Doesn’t play with other people or share interest and enjoyment.
  • Doesn’t ask for help or make other basic requests.


Common self-stimulatory behaviors

  • Hand flapping
  • Rocking back and forth
  • Spinning in a circle
  • Finger flicking
  • Head banging
  • Staring at lights
  • Moving fingers in front of the eyes
  • Snapping fingers
  • Tapping ears
  • Scratching
  • Lining up toys
  • Spinning objects
  • Wheel spinning
  • Watching moving objects
  • Flicking light switches on and off
  • Repeating words or noises
The items highlighted in yellow are the only things that my boy do.  So how could I believe that he has ASD?  My heart was really shouting - I hope not!  

But since I really like to find out ways on how I should deal with my son's speech delay, I arrived on the next link. 

2.  ABA Autism Training - Chapter 1
There are so many links available as soon as you visit this link.  It comes in many chapters. 

3. Hand Flapping, Tip-Toe Walking....Stimming?

Let me tell you, these videos made me more paranoid.  Though I know that I have to face my fear head on!

4. Understanding Hand Flapping...
This link is surely an eye-opener.  Reading thru all the comments in this link, I've understand 
a lot from parents of ASDs to ASDs themselves.  It somehow made me feel relaxed a bit knowing that there are so many hand-flappers out there living "normal lives".

This site also brought me to this site: Primary (Non-Autistic) Motor Stereotypies.  It gave me another insight about my son's condition which lead me to write: Understanding Primary Motor Stereotypies

5. Crystal Children - this is a spiritual link.  Do not read, lest you are ready to believe...
This, I should say, is my favorite and I would say describe my Seraphim more accurately as of the moment.  This deserves another page...a totally new story soon to be written.

     Congratulations! When you arrive on this page that means you are one with me in my advocacy.  Now you know the reason why I am here.  I have been prodded to continue my research to an advocacy.  An advocacy to help confused moms.  An advocacy to help moms who are afraid or embarrassed to ask questions about their little ones.  It's been only almost 2 months for me, but it seems like I am meant to do this forever. 
     I do not mean to come out as preachy or as "know-it-all".  As I have said, all I do is search, research and ask questions.  I know there are a lot of parents who could help me out here.  I am done being paranoid or afraid anymore.  All I know is that I would do anything for my son.  In turn, I would make myself a bridge to help others... moms, parents, siblings and friends.
     Ask and you shall receive... I am not good in memorizing bible verses.  I am more spiritual than religious. But this verse would always be detrimental in my entire existence. 
     Feel free to ask me any questions about ASD.  I am willing to help.  I neither have the medical solutions nor the absolute answers but we could help each other to look for one.  It's easier to make things done when people with like-minds unite :)

After 1 month and 22 days of NO TV and continuous interaction with other kids, Seraphim regained all his antics.  He's more social even with kids.  Points at things more.  More affectionate and grumpy (hahaha).  His speech increases by the day.  He went back where he left off - 9th month. Maybe he's on his 10th month now in terms of speech...who knows.  Most importantly, he understands us and follows our requests and reacts to us more appropriately. He's connected!


  1. Awww--I really don't know what to say, we always hope and pray that our children will grow up healthy and normal as other kids.

    I do have a friend here though, her children always watch telly, disney channels etc, and when they assessed them at the Nursery my friends son, knows all the colours, can count 1 to 20 before the age of 2, and both her children can speak Spanish because of watching Dora the explorer, but they attended Nursery at a very young age, so they get the chance to interact with other children,...

    Let us know about Seraphim's progress...glad to hear about his improvements...

    My son was a bit slow too- he was so lazy and didn't start walking until over 15months. He doesn't talk a lot even before his 2nd bday==but looked at him now, he's nearly 15,and he goes to a Private school-and receiving some bursary because of his high grades. And he's a complete chatterbox...

    1. Thank you for the inspiration Cecille.

      Moms like you give me more reasons to look forward to something wonderful like my son growing up, hearing him talk eventually become a chatterbox :)

      Motherhood, for me, is really challenging and at the same time rewarding.

  2. Hope you continue finding strength from the Lord. I know words are cheap but believe that something good will come out of this. You finding yourself stronger than you think, your husband to be more loving, understanding and responsible and your son to find healing from God. The word impossible is written IM-POSSIBLE. I am possible says God. And by the way, he's too cute in the photo!

    1. Amen to that littleyana! I always believe that God has reasons for everything. My heart will always know that Seraphim is His greatest gift to me so I'll be able to come around- FULL CIRCLE.

      Thank you for the appreciation. Makes my heart PLUMP! :)

  3. This comment has been removed by a blog administrator.


Feel free to share your thoughts...