Behind The Eye Shadow

By Brigitte Kobenan

Many books about the medical, scientific, psychological and social aspects of autism have been written. "Behind the Eye Shadow" is not one of them. This book is a poignant and thought-provoking narrative about a mother’s story on learning her son’s autism diagnosis. Brigitte Kobenan opens a private door into her world and candidly shares her thoughts as she struggles to navigate through her feelings of inadequacy and help her son. She digs into intimate aspects of her life and transports the reader through an unforgettable journey filled with challenges and small victories, with a turn of events that thrust her into a position she never imagined possible. Though nonfiction, this story rises above its specific setting and takes you into a world that blends the agony of fear and despair with the depths of love, faith and spirituality on the way to hope and acceptance. Buckle up!

• Language: English
• Publisher: Brigitte Kobenan
• Release date: Mar 24, 2014
• ISBN: 9781310591143

Brigitte Kobenan

Brigitte Kobenan left her career as a business development officer in the financial industry to be a stay-at-home mom and care for her two children. She is an autism advocate, a speaker, and the founder of the Autism Community of Africa, a non-profit organization dedicated to raising awareness of autism in Africa. Mrs. Kobenan was voted “Mrs. Congeniality World 2008” at the 2008 Mrs. World pageant in Kaliningrad, Russia.

Book preview

We begin tonight with our first award ... and the winner of ... ‘Mrs. Congeniality World 2008’ is ... Cote d’Ivoire!!! She was my choice too ... look at that smile!

" ... Cote d’Ivoire?!" I looked to my right in search of corroboration and Mrs. Iran confirmed by giving me the subtlest of nods. Oh my ... I can’t believe this! Thank you, God! OK ...What was said during rehearsal again? When you hear your name, quickly go to the podium ... then exit to the ... Was it to the left or to the right? C’mon, Brigitte, don’t mess this up!

The crowd cheered as the legendary Florence Henderson spoke. Tommy Habib stood next to her, flashing that megawatt smile! Oh, boy! I moved quickly to the front of the podium and stood between them. Ms. Henderson pointed the microphone at me. I had to say something. Thank you, girls, for voting for me, and thank you, Judges ...

As I managed to say few words, I could hardly contain my joy. Florence Henderson from The Brady Bunch and Tommy Habib from Cheaters, the hosts of the 2008 Mrs. World pageant, were congratulating me. They had just announced the winner of the second most-coveted title of the competition. And the winner was me! Winning something, no matter how big or small, is great, but winning before a large audience on an international level ... what an adrenaline rush! I thought about the difficulties I had faced on my way to the competition. Those challenges seemed irrelevant now. I had just been named Mrs. Congeniality World 2008! And I now had the opportunity I had been waiting for!

JUNE 2004, WASHINGTON, DC: THE PHONE CALL

I wonder what Vinnie is doing today? They had so much fun at the park yesterday that I’m sure a quiet day would be well appreciated, I thought, while sipping my morning cup of coffee and reading my e-mails. Then my private line rang.

Brigitte speaking ...

Kiki, Uncle Mac (short for Marcus) here. Do you have a minute?

News from Canada! It was always exciting to hear about Vinnie’s activities in Montreal. We missed him so much that any news was a celebration for me.

Of course I do. So what did the little munchkins do yesterday? I inquired with enthusiasm.

Dee (short for Darlene) felt sick last night. I guess she caught a cold in the park or something. We took her to her pediatrician this morning. She should be fine; nothing serious to worry about. But the reason for my call is Vinnie. The doctor was eager to see him. He examined him and said that Vinnie has a condition called autism.

WHAT???

Autism ... it is spelled A U T I S M.

What’s that?

I can’t explain everything over the phone right now, but give me your fax number and I will fax you the doctor’s diagnosis.

Doctor’s diagnosis ... I KNEW IT!!! I knew there was something wrong with my son. DAMN YOU, DR. ALVAREZ!

Vinnie’s pediatrician kept reassuring us not to worry, that Vinnie was fine, he was a late bloomer, boys usually are and so on. He also said that the two languages, French and English, spoken in our household made it more difficult for Vinnie to catch up, but not to worry; he would catch up at his own pace. He even used his own son as an example because they spoke Spanish and English at home. Damn you! I said, while tears rolled down my cheeks.

Calm down, Kiki. You are at work. Calm down. There is hope. Just give me your fax number and we will talk about it later. The doctor said there are options and help, so calm down.

202-780 ... I managed to give the fax number to Uncle Mac through a river of tears.

OK ... got it. I’m faxing it right now. Once you have it, get yourself familiar with the diagnosis and we’ll talk about it once you get off work. Okay? Besides that, Vinnie is doing fine. He does not have a cold like Dee. We are going to have a quiet day today. Dee needs to rest. She did not get much sleep last night.

...

Are you all right?

I’m here ...

OK. We’ll talk later. Be strong. There’s hope. Bye now.

Thanks, Uncle Mac. Bye.

And I just sat there ... with a dial tone ringing in my ear.

Eventually I hung up the phone and put my elbows on my desk. I held my head with both hands and sobbed quietly. The sound of the fax pierced through my head and my heart skipped a beat. I nervously bolted to the fax machine located next to my assistant’s desk and yanked the white paper out of it. I took an impatient glance at the notes written on the paper. Through all of the doctor’s chicken scratch scribbling, I saw a set of letters: PDD-NOS. What the hell is that? I then read the meaning next to it: Pervasive Developmental Disorder-Not Otherwise Specified. I jumped on my computer and Googled those letters. Lo and behold! Pages of articles about PDD-NOS came up. I started to read quickly, taking in as much information as my brain would allow. The more I read, the more tears came down my cheeks, so I stopped reading and asked my assistant to reschedule my 10 o’clock meeting.

What’s going on, Brigitte? my assistant inquired.

I can’t tell you right now. I need to take care of something.

I grabbed my phone and called Vinnie’s pediatrician. I was told to leave a message as he was with a patient. I did just that and made sure to emphasize the urgency of my call. I then hung up, fetched my purse and went to the ladies’ room to fix myself up. Once in the ladies’ room, I looked at my reflection in the mirror: Get a grip, Brigitte! There’s a crisis involving your baby. Are you going to cry like a little girl or put your ‘Mommy’ cap on and fight for your son? The answer was clear. After fixing myself up, I went back to my desk and proceeded to read more of the information about PDD-NOS. Then my private line rang. It was Vinnie’s pediatrician.

Brigitte speaking ...

Hello, how may I help you?

This is Mrs. Kobenan, the mother of Vinnie Kobenan, one of your patients.

Oh, yes, Mrs. Kobenan, how is little Vinnie?

Actually, the reason I’m calling today is because Vinnie is not doing so well. You know how I always complain to you about him not talking and being too quiet for a boy his age?

Yes?

You’ve always told me not to worry, that he will be fine, he will grow out of it at his own pace, right?

Right ...

Well, apparently there is more to his condition than meets the eye. Vinnie has just been diagnosed by a pediatrician in Canada where he is on vacation right now. His diagnosis is PDD-NOS. Have you ever heard of this in your line of duty?

Mrs. Kobenan, let’s not get ahead of ourselves here. I know of autism. I actually ...

GET AHEAD OF OURSELVES!? I shouted into the phone. I think we are two years behind ourselves! Apparently, the sooner this condition is diagnosed, the better the treatment. And according to my research, kids who are diagnosed around the age of two have a better chance of seeing positive results from therapies than kids who are diagnosed later. Vinnie is four years old! You have been his pediatrician for three years! Tell me, how are we getting ahead of ourselves? My son has a condition so obvious that a doctor from another country saw it right away, but his own doctor has no clue what’s going on with him!

Mrs. Kobenan, I have his chart with me here and I did note that he has a speech delay …

Hello!!! Of course he has a speech delay! I snapped. Anyone can tell he has a speech delay because he is NOT SPEAKING!!! But as his doctor, what did you do? NOTHING!!! We go to doctors to find answers and healing when we can’t help ourselves. You are supposed to help heal my son’s overall health, not just push Amoxicillin and Tylenol on him!

Mrs. Kobenan, please calm down and let’s see how we can take care of …

I am not going to calm down. And you are not going to take care of Vinnie because as of right now you are no longer his pediatrician! I slammed the phone down. Putain de merde (cursing in French).

I was fuming. The intercom rang: Brigitte, do you have a minute? the voice asked.

Not now, I snapped at whoever was on the line.

By then the box of tissues that sat by my window was empty. That box of tissues had sat there for as long as I could remember, collecting dust. But from the moment Uncle Mac called to drop the news about Vinnie’s condition, I went through it in record time! I got up and went to the ladies’ room to fix my face one more time, as new tears rolled down my cheeks messing up the mediocre repair work that I had just done. At that point, I knew that I would not be productive at all at work. So I left the ladies’ room, went back to my desk, turned off my computer, put my phone on voicemail, confided in my assistant, fetched my purse and headed out the door. I was done for the day.

Walking down the street to the subway was like a punishment. My feet felt heavy. My whole body felt heavy. I was crushed. I started to replay in my head all the signs that Vinnie had been exhibiting since birth, trying to find the moment when it happened. I had just read online that there’s usually a shift from typical behavior to autistic behavior in a child, so I was trying to find that moment. I relived all his milestones, all his sicknesses, all his tantrums. I relived his whole life while walking down the street, oblivious to the world.

WRAPPING MY HEAD AROUND IT

As soon as I arrived home, I went up my room, dropped my purse on my desk and pulled out the bottom drawer to retrieve Vinnie’s First Year calendar. Like most first-time mothers, I had a calendar to mark all his first-year milestones. I sat down in a chair, took my time and went through the calendar slowly so as not to miss an important mark. At four months, Vinnie began batting and kicking at toys just as the calendar predicted. At five months, he sat alone -- two months ahead of the calendar prediction. At seven months, he started to crawl -- one month ahead of schedule. At eleven months, he started to walk -- one month ahead of schedule. And so on. So what went wrong? I began to wonder. Was it something I did? Was it something I ate? Was it my fault? Then came the ultimate question: Why me? I had followed all the doctor’s orders. I did not miss a doctor’s appointment while I was pregnant. I went to every class scheduled for me by my insurance provider. I even have a certificate to prove it! I kept a pretty healthy diet. I was very diligent with my vitamins. I remember reading the labels of everything I ate to avoid fake sugar because my doctor said to. Do you know how hard it is to find a chewing gum with real sugar? I stayed very active and got enough sleep. I did everything I was supposed to do. Where did I drop the ball? Was it during the delivery time with that kidney stone situation? I sat there, perplexed. I went through the questions over and over again. Then, calmly, I put down the calendar, got up, went over to the bed and fetched another document from my nightstand: my dream journal!

I have learned through my life classes that it is important to write down our dreams in a notebook or journal. That way, we can go back and read them again when necessary. Some dreams are so powerful that they stick with us and are always present in our minds, but others not so much. We forget about them and go on with our lives without giving them a second thought. The amazing thing is that most of the time these dreams are relevant to our lives.

Slowly, I started to go through my dream journal, calmly reading, desperately searching for answers or some kind of clarification … something that would help me understand what my son was going through and why this had happened to us. Finding the answer in a dream journal might seem a bit delusional. Yes, but not always. Sometimes dreams can be more helpful than we care to give them credit for.

The psychoanalyst Sigmund Freud introduced his theory of the unconscious through his book, The Interpretations of Dreams, stating that dreams are … disguised fulfillments of repressed wishes. The contemporary spiritual teacher Eckhart Tolle took a different approach to the definition of dreams. On page 209 of his book, A New Earth: Awakening to Your Life’s Purpose, Tolle wrote: There is the dream, and there is the dreamer of the dream. The dream is a short-lived play of forms. It is the world -- relatively real but not absolutely real. Then there is the dreamer, the absolute reality in which the forms come and go. The dreamer is not the person. … The dreamer is consciousness itself -- who you are. No matter how spiritual, philosophical or scientifically true the explanation of dreams is, at the end of the day it is the meaning that dreams hold to the dreamer that matter.

In my case, dreams have been a great source of answers to many questions in my life. Contrary to the assertion of G. William Domhoff, the well-known researcher who stated that dreams most likely serve no real purpose, I rely on them quite often. Let me be clear: I do not sit and wait to have solutions to all my problems appear in my dreams. Dreams are merely a tool to help me make decisions if I am fortunate enough to have