Facing Autism: My Journey to Acceptance PT I

Our first meeting about Angel’s developmental progress is one that I will never forget. It was the first time that someone suggested that he may be on the autism spectrum. This was four years ago and back then I had no idea that we were just beginning our journey with autism.

I remember my husband and I walking into the meeting room with our two-year old, Angel. He immediately began playing with some toys while his dad and I sat at the table waiting for the meeting to begin. Everything was going well until the district representative started asking us  questions.

“Does he bang his head?” she asked.
“No,” I replied.
“Does he rock back and forth?” she asked.
“No,” I replied again.

By her second question, I became agitated. I had no idea what my husband was thinking but I knew where the district representative was going with her questions. I was waiting for her to say the word autism. Yet, I was also afraid of hearing the word autism.

I admit that I did not really understand what autism was. I do recall watching Jenny McCarthy talk about it during an interview with Larry King but I did not know anyone on the autism spectrum.

A few minutes later, the district representative casually said, “I think he is the A word.” My body went cold with anger. I remember thinking that this lady was not qualified to diagnose my son. I remember thinking that my son is fine. He just has a little speech delay. He will grow out of it. He will start speaking soon like all the other children his age. I even remember my in laws telling us that my husband did not speak until he was four. I remember thinking that we still had two more years for Angel’s words to come.

Whenever I voiced my concerns about Angel’s speech delay, people would say, “Oh he is just a boy. Boys do everything late.”  His preschool teacher even offered me this gem, “These goals on his IEP, don’t pay them any mind. He could be a late bloomer.” I believed her.

She even told me about a book called Leo the Late Bloomer. In the book, Leo’s dad wonders about him being a late bloomer. Leo’s mom asks his dad to be patient. In the end, Leo can do everything that he could not do before. My Angel is not Leo.

In fall of 2009, we had ear tubes put in Angel’s ears because of fluid buildup. After his surgery, I waited and waited for the avalanche of words to come. I had heard stories of other children speaking after getting ear tubes. The words did not come for Angel. In fact, the only change was that he would scream whenever we turned on the vacuum.

When Angel turned four, he only communicated with us using sounds and single words. As time went by, Angel’s progress reports and evaluations became harder to read. His fine motor and gross motor skills were lacking. Now he also needed occupational therapy and physical therapy.

Finally in 2011, I got the progress report that would break me. My now four-year old son was emotionally and cognitively only 1.8 years old. I did not think that it was possible for a broken heart to shatter into tinier pieces.

The tears came but as they rolled down my face, they also gave me a jolt into reality. My son needed help— desperately. It was time to dry my tears, pull my head out of the sand, and finally get to work!

Check back every other Tuesday for additional articles from Kpana Kpoto as she shares her experiences and what she learns as she raises her son that has been diagnosed with Autism.

BMWK – When did you first realize that your child was not developing typically?  What did people say to re-assure you? What did you do about it?

*IEP stands for Individualized Education Program