Monday, April 2, 2012

Autism Awareness Month (Part I)

Life Unedited

It was about eight years ago when I told Varuzh that we were having a baby. And, after I got over the morning sickness months, I fell into the amazing world of pregnancy. For me, as a woman, nothing could top those moments when I heard the heartbeat of my baby for the first time, or when I felt my baby move, or when I heard doctor telling me that we are having a boy. He was due in November, and I could not wait to meet him. But until then, my baby and I were inseparable, literally, and did everything together – we woke up together, ran to work together, read, ate and went to sleep together… And when the little baby boy was born into our family, our threesome finally became a foursome!

I think I may have gone a little overboard in getting my little baby boy the best of everything I could afford – he was eating organic food and wearing organic clothes. His pediatrician looked very pleased at every visit - taking first foods, growing inches, adding ounces, walking, uttering first words…

…until he turned about eighteen months… that was in April five years ago when I was holding Alex in my arms and my sister noticed that he was rolling his eyes. “Is he having a seizure?” the horror was written on my sister’s face. I looked at Alex, he stopped rolling his eyes and… looked fine. Then this incident was repeated at Alex’s pediatrician’s office, then at a neurologist’s office, then during the CT scan… No abnormalities and no seizures were detected. Phew!

“Did you ever see signs of autism in your son?” the neurologist asked.

“What autism?” I dismissed silly talk… This baby grows according to the chart!

Just to be safe, the doctors suggested for Alex to start speech and occupational therapy… for twelve hours a week…. Poor baby, I thought, instead of hanging out in playground, or playing with toys or doing nothing, just like other two-year-olds do, he had to work with therapists. I did not think he needed it – kids grow at a different pace and if Alex slowed down in his speech development or food intake, I did not think he needed to work so hard at the age of two.

Soon after, though, Alex started refusing every food we put in front of him, stopped speaking, and forgot how to use a towel after I washed his little hands. Day in and day out we were struggling to feed him, so we took him back to therapy. No one seemed to be able to teach him to eat and kept telling us that we should consider taking Alex to a hospital and have a g-tube placed… Varuzh and I were devastated - the beautiful and healthy baby was melting in front of our eyes, constantly getting sick, refusing all food…

…at nights I was sitting next to my little baby watching him sleep and wondering if he was sleeping because he was tired or because he was weak and hungry, and if it is time to take him to the emergency room…

There was no name to this strange phenomena except for… autism… and I finally called the doctors that specialize in autism… and was told that their appointments were four months out… So I called them every day, five times a day, hoping that someone would cancel their appointment and we would get in... It was Monday afternoon, about an hour after I called their office I, finally, got the call back. The nurse, who already knew me by my voice and first name, said to come in the next day to see the doctor.

At 10AM sharp we got in, and the appointment lasted about two hours. As the doctor was talking to me and Varuzh, asking questions about Alex’s behavior, Alex was sitting with his back faced to us and spinning the wheel of a toy truck for the entire two hours… Many people came in and out of the office, but Alex never turned around.

“Your son has autism,” the doctor said. She picked him up to check all his reflexes and to look into his eyes. “He is smart, though.” She said; but I did not know what she meant by that. At that moment one word was echoing in my ears. Autism, autism, autism, autism...

That was not the day I accepted that my baby has autism, but as I look back, I am wondering why it took me so long. I certainly read about autism and, after all, even though Alex’s pediatrician never officially diagnosed him, she did suggest us to start therapy sessions. I also watched numerous segments in news about autism. They talked about loss of speech, loss of social skills, sensitivity to light and sound… But Alex lost his ability to eat, and that was not on any list!

And, honestly, that could not happen to my baby!

About two weeks later I managed to get an appointment with another neurologist who confirmed the diagnosis. But I did not give up and thought that maybe Alex was simply allergic to the foods we were giving him…So I took him to an allergist.

Dr. Berger had a good reputation, he even wrote the book “Allergies for Dummies” and shared the same last name as my grandmother. I hoped that maybe he would finally solve the mystery for me… and he did…

After the nurse performed the allergy test on Alex’s back, the doctor walked into the office where Alex and I were waiting. “Alex has no allergies,” he said…

My heart dropped at that very moment. “But why doesn’t he eat?” I asked with desperation! The doctor looked at me and, at that moment of silence, I knew that there was no way out for me and my boy but to face the reality… The silence was heavy and awkward. No word could come out of my mouth. But my thoughts were loud and the doctor heard them. He finally got up and asked me: “is there anything else I can do for you?”

I slowly started helping Alex put his jacket on. I could not utter a word. My hands were heavy from all the tears that filled my heart and body. There was nothing else the doctor could do for me.

I finally knew that my son has autism…

With love always,
xo Zuma A.
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