October is Autism Awareness month in Ontario. Today, I am sharing the beginning of our story...
It was at my nephew's birthday party that it became undeniable that Josh was somehow different. At the time, terms like Aspergers, autism or nerotypical were foreign to me. But seeing Josh - even at the age of two, almost three - with a group of his peers, I knew something wasn't right. That day at the party, the other kids played and interacted with varying levels of success. However Josh did not; and I could see that it wasn't that he wouldn't, it was that he COULD NOT. Socially, even at this young age, I could see he was lost and terrified. He cried and threw at fit, and neither John or I could comfort him. Besides being embarrassed, I was heartbroken. My sweet son was lost and afraid and there wasn't anything I could do to help him - he wouldn't, couldn't let us in.
There were clues before the party. As they say hindsight is 20/20, and looking back there were signs right from babyhood. He would scream and panic at bath time - trying to bath him was like bathing a cat. He was happy to sit all by himself for hours at a time. Just sitting - staring off into space. When he finally started crawling, he would crawl off to the toy corner and look at the toys. He didn't play with the toys, just looked at them - occasionally he would line them up. And if someone would come to interact with him he would have a melt down. Most of the time he was in his own world.
After we arrived home from my nephew's party I was emotionally exhausted. Once the kids were in bed, I turned to John and asked if he was feeling what I was feeling.
"Do you really think there isn't a problem?" my eyes were pleading with him to understand what I was saying.
"Maybe there is." he said.
That night we had a long talk. John admitted that he was afraid. Afraid of what might be wrong. Afraid that if we went to professionals for help, that we would look like incompetent parents, and our kids would be taken away. We agreed that we give Josh a little more time. And if there still wasn't improvement, would start by taking Josh to our trusted family doctor.
The next morning, I woke up feeling refreshed, hopeful even. I was not in this alone. We could do this together. Together, we could pull Josh out of his world and back to our family. I convinced myself that maybe John was right - all Josh needed was a little more time.
It's odd how life unfolds. During this wait and see period, the local newspaper wrote an article on Autism. I read it and it struck a chord. The article struck a chord with others as well. Two ladies I worked with, my mother-in-law and my own mom all called and suggested I read it.
I didn't wait any longer. I called our family doctor and got Josh an appointment. At the appointment I answered questions about Josh's development thus far. I explained that it wasn't just his development delay that I was concerned about. I told him that I realized that all kids develop at their own pace, but what I saw with Josh was different. Odd. I asked if he thought it might be a hearing problem. Our doctor agreed that we should have a hearing test done. As well he was going to send us to a developmental pediatrician. I glanced at the chicken scratch notes Dr.C was jotting down. PDD? Phew, I thought to myself - he doesn't think it's autism.
When I got home, I looked up PDD in my What to Expect - The Toddler Years, my heart sank. There wasn't an entry for PDD, but it was mentioned under the autism entry.
Autism- What is it? A syndrome (a group of symptoms) rather that a clinical disease or condition. Autism is the most common form of Pervasive Developmental Disorder or PDD.
My head was spinning. Is PDD autism? Are there other PDD's? I couldn't just sit around, waiting for appointments. I needed answers. I found myself on the phone with the region's intake services. When the intake worker on the other end asked how she could help I stammered, "umm, could you tell me the difference between autism and PDD?"
This kind angel woman stayed on the line with me for over an hour. She explained to me that PDD was an umbrella term. All the developmental disorders stemmed off under the PDD umbrella. Autism wasn't the only developmental disorder, PDD-NOS, Aspergers and Rhett's were some of the others. She put me on wait lists for speech and language services, a behavioural screening, preschool services and special services at home. When I hung up the phone, I was drenched in sweat. I looked at Josh, who was zoned out in his own little word. He was oblivious to what was going on, but I wasn't. I sat there and and cried.
