From Denial to Acceptance: Life on the Autism Spectrum (Part 1)

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We entered the meeting room and sat around the table. A few seconds later, our IFSP meeting began.

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

I knew where the district rep was going with her line of questioning. I had heard about autism. I watched Jenny McCarthy talk about it on Larry King. “She better not go there,” I thought. Angel’s dad and I looked at him running around the room, happy as ever. “Yeeeeeee!” he squealed. That was in February 2009. Angel was two years old. “I think he is the A word,” she volunteered.

My body went cold and I thought that this lady is hardly qualified to diagnose my son.

I refused to believe that my son was on the autism spectrum. I ignored her comment and the meeting progressed. Angel was approved to receive speech therapy 3×30 (three times a week for thirty minutes). My work was done or so I thought. I admit that a part of me wondered when he would start speaking like other children his age.

With Angel’s speech delays, people often felt the need to tell me: “Oh he is just a boy.” and “Boys do everything late.”  Later, his former preschool teacher would offer 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 the book, Leo the Late Bloomer. In the jameshallison casino book, Leo’s dad wonders about him being a late bloomer. Leo’s mom asks his dad to be patient. In the end, Leo blooms. He can do everything that he could not do before. The End. But my Angel is not Leo.

Angel’s dad did not speak until he was 4, so we all believed that Angel”s words would come soon. Then, Angel turned four and he was still communicating with sounds, single words, and gestures. In the fall of 2009, he had ear tubes put in because of fluid build up in his ears. After the 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 the vacuum on.

As time went by, Angel’s progress reports were looking gloomier every quarter. His evaluations became more devastating. His fine motor and gross motor skills were lacking. Now he also needed occupational therapy and physical therapy.

Then, in 2011, I got a progress report that shattered me. My now 4-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. How this could be? He had been in a special-needs school since 2009. We were in 2011. 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 get to work!
To be continued…

When did you first realize that your child was not developing typically? How did it make you feel? What did you do?

I am interested in hearing what you have to say.
Sincerely,

Miz Kp

 

*IFSP stands for Individual Family Service Plan