Home > In Their Own Words > Why I Listen

Why I Listen

My name is Cola.  One year ago I became Auntie to an adorable 4-year old little drummer boy I met in a restaurant one evening.  His expressions of life beat to a rhythm apart from, yet inclusive of the majority. When we began to communicate he echoed my words and often released my hugs before I could inhale the fragrance of his beauty. Initially, I would find myself feeling overwhelmed and crying because I felt helpless in my ability to connect with him, but as we began to spend more time together, I began to learn that entire he said when he did things repeatedly. My heart began to  translate what he wanted, my mind began to seek all that he needed and my passion said we could have it all, by any means necessary; realizing that in order for us to have it all, we would have to employ the skills of everyone. So To start we organized playgroups with my nieces and nephews his age. We began reading very short stories during story-time, modeling expressive language and phonetics for him to speak and kept redefining transition techniques along with a host of other things, as because our little one’s actions of autism where loudly speaking, saying:  “I have all that I need to be a successful, independent, strong human being, but I need you to intervene and provide me with the resources to support my personal developmental needs.”  In that moment, autism spoke, and as we listened, and boy oh boy did our little drummer boy began to respond and change recognizably.

The echolalia diminished, his social skills increased, his transitions became age-appropriate and he began talking so much we had to ask him at bedtime to have quiet-time so we could go to sleep. I could go on and on talking about this budding little one, sprouting as if he were an oak tree but the pages of this blog would be overwhelmed and we would not be able to share with you some important chords to make beautiful music with your little ones who so anxiously wait to plant seeds of Oak Trees.

Autism is a voice of the adorable little ones with a unique way of communicating. There is no such thing as “average” when it comes to any child and there is no “norm” when it comes to any human being but what there is, is a majority. Yet, majority isn’t necessarily what’s right and minority isn’t necessarily what’s wrong; however, there are just defining characteristics of differences that make each individual a unique expression of love.

My profession as an Early Intervention Program Coordinator for children ages 2-5 with developmental delays and disabilities lends to me a world of discovery. A treasure of resources, I aspire to share with many. So, when I learned of [Grammy-nominated  R & B singer] Bilal‘s mission to use his platform of music to raise awareness about a subject dear to his heart, I could not pass up the opportunity  to partner my knowledge, passion and energy to expand, neither could I ignore the synchronized happenstance fact that the name of Bilal’s tour is the nickname we call our child. [For more information on Bilal's LITTLE ONE SUMMER TOUR for Autism Awareness, click here.]

On this tour we will share the developmental milestone check list and local resources. We will link you to appropriate services for your little ones to experience his or her civil right to a “Free Appropriate Public Education”. We will also share contact information of proven advocates and tie your heart strings to strong connections with other families who share your passion and vision of a beautiful landscape for your little one’s budding oak tree to grow into a landmark that will outlast generations and endure the phases of growing into a strong, healthy, independent human being.  So, when you find yourself pondering the question of why you pour out your heart, continue to lend your tireless efforts and do what you do in support of these unique little ones, the answer will always exist in the silent voice that whispers, “AUTISM SPEAKS!”

This entry is dedicated to Dominic, Our Little One and his Mother Marta.

Cola

Cola is also a children’s author and motivational speaker. Email her at: phylliscola@gmail.com www.childrenmeanttheworld.org .

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“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. August 12, 2011 at 12:51 pm | #1

    I HAVE BEN LIVING WITH AUTISM FOR 13 YEARS AND 1 DAY!!! MY YOUNGEST DAUGHTER (LINZY) WAS BORN AUGUST 11,1998 !!!!! MY SCHEDULED C-SECTION WAS FOR 7:00 AM ON 8-11-98 !!! HAD TO BE AT FOOTE NOW (ALEGENCE) HOSPITAL AT 5:00 AM TO GET ADMITTED!!!! A COUPLE OF EMERGENCY’S CAME AHEAD OF ME SO ITS 8:00 AM !!!! I SAY HEY R WE GOING TO HAVE THIS BABY NOW OR WHAT? LOL THE DR. SAYS YES SO I GO IN TO THE SURGERY ROOM AND GET MY EPIDURAL AND I WAITED FOR MY DAUGHTERS FATHER TO SIT BESIDES ME!!! HE SITS DOWN AND THE DR. CUTS MY C-SECTION SAYS WE HAVE ALLOT OF SCARE TISSUE THIS IS GOING TO TAKE A MIN. SO I LOL OK I CAN NOT FEEL NOTHING!!! HE SAYS GOOD HERE WE GO!!! HE CUTS MY UTERUS OPEN AND I HERE MY DAUGHTER SCREAMING AND INHALING AMANOMIC FLUED AND THE DR. SAYS WELL THAT’S A FIRST !!!! I SAY A FIRST WHAT????? I AM SCARED AT THIS POINT!!!!! THE NURSES STARTS CLEANING HER OFF AND 1 OF THE NURSES SAYS SHE (LINZY) SOUNDS LIKE SHE HAS A WET CRY!!!!!!! I AM FREAKING OUT BY NOW!!!! I AM CRYING AND HYPERVENTILATING THEY TELL ME TO CALM DOWN OR I COULD HAVE A BLEED OUT!!!! SO I TELL HER FATHER TO GO WITH OUR DAUGHTER AND I WILL CALM DOWN!! SO HE LEFT AND I CALMED MY SELF DOWN!!! I STARTED FEELING STUFF MOVE WILE THE DR. WAS FIXING MY TUBES !!!! SO THE ANESTHESIOLOGIST SAID I AM GOING TO GIVE THIS TO U AND DON’T BE SCARED BUT IT WILL MAKE YOUR EYES CLOSED BUT U WONT FEEL ANYTHING AND U WILL BE ABLE TO HEAR EVERYTHING OK !!! I SAID FINE WHAT EVER JUST TAKE MY PAIN AWAY (NOW)!!!!!!
    THE DR. GOT DONE IT TOOK HIM 1 AND A HALF HOURS BECAUSE HE SAID YOUR TUBES WERE SO SMALL I AM SURPRISED U HAD ANY CHILDREN!!!! SMALLER THEN A PENCIL LED HE SAID!!!!WOW U R 1 LUCKY WOMAN!!!! I GOT INTO MY ROOM AFTER RECOVERY AND I WAS LIKE WERE IS MY BABY GIRL?? WELL A VERY RUDE NURSE COMES INTO THE ROOM AND SAYS ( U CANT SEE YOUR BABY SHE IS IN A OXYGEN TENT AND U CAN NOT SEE HER FOR 3 DAYS)!!!! AND TURNS AROUND AND WALKS AWAY!!! I STARTED CRYING AND HYPERVENTILATING AND SAYING (I WANT JOE NOW)!!! SO MY BROTHER KEN WENT OUTSIDE WERE JOE WAS SAYING GOOD BYE TO SHEILA HIS SISTER!!!! KEN SAYS GALE IS FREAKING OUT AND SHE IS SCREAMING YOUR NAME ITS ABOUT THE BABY!!!! SO HE RUNS TO MY SIDE AND HE HOLDS ME ENOUGH FOR ME TO CALM DOWN!!! AND MIND U I AM STILL PARALYZED AND JOE GETS THE HEAD NURSE AND TELLS HER WHAT THE RUDE NURSE DID AND SAID (U R GOING TO TAKE HER IN HER BED AND SHE IS SEEING HER DAUGHTER!!!!!!!!) I GOT TO HOLD MY BABY GIRLS HAND AND KISS HER HANDS !!! I STEAD THERE UNTIL SHE HAD HER FIRST SEIZURE !!! WHICH WAS 6 HOURS OLD!!!!
    SO I KNOW ALL ABOUT AUTISM!!!! LINZY IS MY GIFT FROM GOD!!!!!!!! SHE IS NON-VERBAL NO COMMUNICATION AT ALL!!!! SHE BABBLES LIKE A 6 MONTH OLD!!! LINZY HAS CEREBRAL PALSEY, BRAIN DAMAGE,SEIZURE DISORDER,AND FULL BLOWN AUTISM !!!!! I DID NOT GET TO SEE HER YESTERDAY ON HER 13TH BIRTHDAY!!! HER DAD WOULD NOT ANSWER THE DOOR OR THE HOME PHONE AND CELL!!! BUT I LEFT A BEAUTIFUL NOTE AND PRESENTS IN HER OLD HOT PINK BACKPACK IN BETWEEN THE DOOR AND SCREEN DOOR!!!! I LOVE U MY BABY GIRL LINZY FOREVER AND ALL WAYS!!! U R WHAT MAKES ME LIVE AND BREATH EVERYDAY BABY GIRL!!!!

  2. La Rae Cupp
    August 12, 2011 at 1:02 pm | #2

    When I read this blog I had tears in my eyes,not because I feel sad but because I understand every single word of it. I have a 6 year old son with Autism and I love him with all my heart. I also understand how wonderful having early intervention is The tutors have truly been given a gift from god. From myself ,my son Edward and our family, THANK YOU !!

  3. cola
    August 20, 2011 at 7:30 am | #3

    To you my family,
    Autism has formed us.
    Love has bonded us.
    Passion has made us a troop of unwaivering beings.
    YOU are strong and your destiny is not a mistake and the experiences you are sojurning thru are tools to define you even more. I am here and we are every where speaking in one voice, in one accord and with one song, Love!
    Thank you for sharing this entry and supporting one another.
    Cola

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