Autism - Part 2

On August 26, 2003, I brought my new baby boy home. He had fallen asleep on the drive to our house, so I popped out his little carseat, carried it in, and set him down on the coffee table in our living room. I just stared at him for a few minutes, then I turned to my husband and said, "I can't believe we made this. He's just perfect." Of course, I knew he wasn't perfect in the biblical sense, but he was everything I had ever wanted, all my dreams, packaged up in 7 lbs, 15 oz of sweet innocence. I knew that I could never love anyone more than I loved that beautiful little boy, and I would do everything in my power to keep him safe.

For the next year, Scott and I hung on his every movement. We'd call each other at work when he'd roll over. Or smile. Or giggle. You name it, we were relishing the moment. Watching his progress was simply amazing.

Around 15 months, he started doing something that was, well, unusual. He would spend several minutes pacing in circles. What an odd kid, we thought, but he laughed and laughed, so we laughed, too. He was enjoying this, for some reason, but a happy kid made for a happy mom and dad.

Meanwhile, his cousin had been having some serious developmental delays. We weren't sure exactly what was going on, but we knew what wasn't. He was approaching age 3, and he still wasn't speaking. Right around this time, Will was diagnosed with autism. I remember being a little confused about this from the beginning. My only experience with autism was from the movie "Rainman," and Will was nothing like him. I started reading more about autism, and suddenly, a light bulb went off. Sammy wasn't speaking yet, either. He also had a lot of bizarre repetitive behaviors. He didn't want to play with us anymore, really. Oh, God. Please no.

I could barely squeak out the words when I brought it up to Scott. He thought I was overreacting. Kids develop at their own pace, he said. If he's still showing these signs in a couple of months at his check-up, we'll talk with his pediatrician. That sounded reasonable. I was probably worried about nothing, internalizing the struggles that I had read about and that I knew was affecting my brother, his wife, and their son. Yes, it's probably my imagination.

I took Sammy to his 18-month check-up. While he'd missed a speaking milestone at his 15-month appointment, he had missed almost all of them at this one. I had a talk with his doctor, who told me that we could get him in for an autism evaluation now, or we could wait and see and worry for the next 6 months, when we could have this same conversation if things weren't improving. Set it up, I said. If this is what he had, all of the literature I had read said that early intervention was key, and it doesn't get much earlier than 18 months.

At 20 months, he had his initial evaluation. He was given a "provisional diagnosis" of autism, which was because he was so young that they wouldn't give an "official" diagnosis. Being naive to Ohio law, I thought this was crazy, that he needed services for early intervention, and for that, he'd need a diagnosis. We spent the next several months having evaluations from all kinds of specialists. Just before he turned 2, I took him to Children's Hospital in Columbus for the "official" diagnosis. I remember walking into the specialist's office. This guy...he'd know what I should do. I had hoped he'd tell me that Sammy was delayed, but that he'd grow out of it. Nothing to worry about. I didn't believe that's what he WOULD say, I had just been hoping. The kind of hope that you know is unfounded - like hoping you'll win the lotto. There's an outside chance that I (and the team who had given him the provisional diagnosis) were wrong. What he said was actually worse than I had imagined. He told me that Sammy did indeed have autism. He went on to say that he had tested in the range of moderate retardation, and if I didn't get him into therapy right away, 40 hrs/week, that he'd likely never progress. "Moderate retardation." My son, my beautiful, innocent baby boy, was retarded. It is this incident, my friends, that I recall when I hear the word retarded. The absolute worst moment of my life. The moment when I knew this wasn't going to go away. My child had autism.