• September 2009. My mom came to Nashville to stay with the kids so I could go to Vegas for the weekend to see Cheap Trick do Sgt. Pepper Live at the Las Vegas Hilton. On the flight to Vegas, an article in the airline magazine caught my eye. It was about a child with autism, and it sounded a lot like Liam. I was sort of in shock. I didn't want it to be true, but I knew.
My good friends will tell you I will research the hell out of things, and that is exactly what I immediately went to work on. I got online and spent countless hours trying to make sense of what may be going on with Liam. It was all I could think about. There was a lot of information about the signs and symptoms of autism, but I was very confused by it. There were some things about Liam that seemed like autism, and other things that didn’t.
I distinctly remember the one thing that hit home to me was the affinity for water. Liam, who's was 18 months old at the time, would stand at the sink endlessly and watch the water from the faucet. He was kind of obsessed. Liam also didn’t always respond to his name when you tried to get his attention. He was kind of aloof. He didn’t complain or cry that much. He was pretty easy going and content. But he wasn’t really antisocial, a symptom they look for with autism. That was one of the things that threw the therapists and evaluators off about him. He didn’t spin the wheels on cars or line things up. He actually didn’t play with toys that much. He didn’t flicker things in front of his eyes and look off to the side. But he was in his own world, a world we didn’t quite understand.
That weekend I attended a friend’s birthday party in a restaurant on the Las Vegas strip. I was seated at dinner next to a very nice man named Alvin. We started talking and I found myself talking about Liam. I was struggling to process what was going on, and pretty soon I was in tears. I explained to him that I was trying to make a deal with God. “Just please let Liam be ok and let this not be his fate, and I promise I will do something to give back to help people with autism.” Alvin looked at me directly in the eye and said, “You are going to do something for people with autism.” But the way he said it struck me. He said it like he knew, like there was no doubt about it. I continued talking to Alvin the entire evening. His spirit helped to uplift me at a difficult time, and I still remember it vividly. I later heard that Alvin was a spiritual advisor. I don’t know if it’s true, but it sure felt that way.
During that first year, I spent countless hours researching everything I could find about autism and other developmental disorders. There was plenty of information online about symptoms and lots of theories about what may be causing such an epidemic in numbers. But a lot of it sounded like quackery to me.
What I really wanted to know more about was what life was like for families with autism, and there wasn’t really much out there on that. I read plenty of books. I read all about the various biomedical “alternative” treatments. But what I wanted to know about was what life was like as these kids get older and become adults. I also couldn’t understand why more celebrities weren’t speaking out on behalf of autism. Given the statistics, there had to be plenty of famous families living with it. But there wasn’t much that was very personal, and that’s what I was struggling to process. What was our life going to be like?
Today things are very different than they were then. There are lots of wonderful blogs written by parents of kids with autism. I read several of them daily. I find that other parents are the best resource for advice. It’s also comforting to know there are other people out there dealing with the strange and stressful behaviors that we are.
When the opportunity to do the documentary film came along, we didn’t hesitate very much to say yes. Although my husband is a well known rock star, I have never been comfortable in the limelight. I have always avoided the cameras and attention that are often on Tom. But somehow the opportunity to tell our story felt like the right thing to do. It felt right because it was the kind of thing I would have appreciated seeing when I was new to understanding autism. I hope that people will find our story uplifting and realize autism isn’t as devastating as it may sound.
A couple of weeks ago, I reached out to my friends who had the birthday party in Las Vegas. I had often thought of Alvin along the way. The further along we got with Rock Your Speech and then the documentary film, the more I thought about Alvin’s words to me, “you are going to do something”. I hoped we could reconnect and I could let him know about what we were doing. I really just wanted to thank him for making me feel better and let him know I never forgot it. My friends gave me Alvin’s phone number and I sent him a text. I wasn’t sure if he would even remember me. A week went by and I never heard back from him. I thought I probably sounded like a nuisance. Then I got a phone call from my friend Roger, letting me know Alvin had died a couple of days ago. Shiver. Life is certainly strange, and I am so sorry that I was never able to reconnect with Alvin. I’ll never know if he was well enough to see my message. But I do know I have another angel to call on when I need a lift from this roller coaster of parenting a child with autism.
So here’s to you Alvin. Thank you for your kindness and rest in peace.
Comments will be approved before showing up.