October 27 marks the seventh anniversary of my child’s autism diagnosis. There is no cake. There are no presents. There is no celebration. It is a day to reflect…
My daughter was 19 months old and after waiting two months for an appointment with a developmental pediatrician and calling every day hoping for a cancellation, we were granted an opportunity to get answers to our child’s detachment from the world.
She never responded to her name. She did not know we were in the room most of the time. I smashed dishes on the floor and she did not flinch. However, when I put Sesame Street on the tv, her ears perked up and she looked toward the sound. She never talked. She said a few words here and there, but they were never consistent. She ran up and down the hallway repeatedly. She cried when we were in crowded stores or noisy places. She hated every Mommy & Me class and screamed until I took her out. She put everything in her mouth and chewed her books, ate dirt, and licked the floor all the time.
I remember the day of her diagnosis so vividly. It was a dreary, chilly, blustery October day. The sky was dark grey and there was not one tiny ray of sunshine peeking out of the clouds. I bundled her up in her new winter jacket. I wore slacks and a sweater – and heels. I thought dressing up would encourage a bright outcome. I knew what the doctor was going to say, yet I held out hope that it would be a positive prognosis.
We went to the Children’s Hospital at Hackensack Medical Center. We were led down different hallways to see various administrators prior to her evaluation. They determined our insurance will pay nothing and charged a $500 office visit to our credit card. Autism is expensive — and this was the first of many expenses we would incur.
The doctor led us into a small examination room that had some toys, a small desk, and some chairs for adults to sit on. My daughter made a bee-line to the electrical socket which was at her eye level. I scooped her up before she could put her hand in the tiny holes. I shook my head — shouldn’t they obscure that with childproof outlet covers? It’s a CHILDREN’S HOSPITAL! The doctor brought out a small desk and we sat our daughter down in the chair. The desk folded over to close in on her so she could not escape. She began to squirm and whimper. The doctor tried to go through different exercises and give her puzzles and problems to solve – like getting a pom-pom out of a bottle or re-arranging shapes. It did not go well. She put the puzzles in her mouth. The only task she did complete was lining up some blocks. She grew more and more agitated and made eye contact with me for a brief moment as if to say, “Help me, Mommy!”
After less than 10 minutes the doctor turned to us and said, “Your daughter is on the spectrum.” I knew it.
Family and friends told me I was crazy when I had suspected my child had autism. Some suggested I wanted attention or was looking for something that was not there. It was all too apparent to me. My daughter did not have any of the skills and did not interact like other toddlers her age. It was painful for me to see other children — I kept asking myself, “why isn’t my baby talking like that other child?”
Part of me was happy to hear some validation. YES! I can tell all the nay-sayers that I was right! I am NOT crazy! I am not craving attention or making things up. I have intuition. I know my child. I AM RIGHT! I do not have Munchausen Syndrome by proxy! I am not one of those crazy moms! But that feeling of victory faded in a second when I realized I did not really want to have my suspicions validated by the truth.
I cautiously asked, “How bad is it? What’s her prognosis?”
The doctor sighed. “Well, we do not have a crystal ball. She may improve but we just don’t know if she will ever go to college, get married, be able to live on her own or take care of herself.”
Boom. Someone shot me in the heart.
“What?” I started to hyperventilate. My baby. My sweet, beautiful, innocent baby. AUTISM? Never get married? Never have children? Never go to college? I dismissed each one. Except: never be able to take care of herself. The reality of autism finally hit me. Autism.
The doctor was empathetic but I know she expected my reaction as I expected the diagnosis. “Your daughter has autism. She needs treatment. Children do improve with treatment. However, we do not know how much she will improve. She has the language skills of a three-month-old.”
I sat there stunned and from then on I do not remember much. I know the doctor gave me a referral to see their social worker and to get our daughter physical therapy at their center. But we congenially gathered up our child, who now was happy and quiet because we were leaving, and we left.
It seemed colder and bleaker as we walked to the car. The sky seemed to close in on us. The wind whipped with more force. My eyes teared up. We sat in the car for a few seconds in silence. We reassured ourselves that we would get her therapy and she would be fine. She would be fine. Yes.
Unfortunately, the doctor did not explain the enigma that is autism in depth. I woke up the next morning and stared at the ceiling. Where do I start? What do I do? How can I save my child? Why did this happen? What is happening?
I was lucky to have people in my life who were very knowledgeable about autism and who could guide me in the right direction. After a few days of mourning the dreams I had for my daughter, I mobilized to get her what she needed.
And now, seven years later it is apparent she will probably not go to college, get married, have children, or be able to take care of herself. However, we have been witness to her many talents and abilities. She has autism and it cannot stop her from being who she is.