Asperger's beyond the spotlight: What happened after going on TODAY

May 30, 2011 at 11:20 AM ET

For Tara Kennedy-Kline and her family, appearing on the TODAY Show last month was a moment of triumph, as they shared how they'd learned a new system for dealing with their son, who has Asperger's Syndrome. But what happened afterward?

The spotlight is a brilliant place to be. All the hard work, passion and effort culminate in this one perfect moment.  The world is right and everything is just as you dreamed it to be. 

But once the spotlight goes off, all we are left with is our reality -- and the dark.

That’s what life has begun to feel like lately for me. 

About a month ago, my family and I were in that spotlight on the TODAY show, showcasing the new reward-ticket technique we were taught to reshape the behavior of our son Alex, who has Asperger’s Syndrome, and make him “better.” At the time, life was amazing!  My husband had not raised his voice in several weeks. My older son was enjoying spending time with his baby brother. Alex’s teachers were happily doling out tickets to reward his good behavior and I was loving life … relaxing more, breathing easier and sharing the benefits of our new system to any parent within earshot.  We were mesmerized by the magic of the “Golden Tickets” and were honestly quite offended by anyone who dared to pooh-pooh the process or our belief in it. 

And then, the spotlight began to dim.

My boys started fighting again. My husband started raising his voice. The school was sending home fewer reward tickets and more notes about Alex’s “bad” behavior. And I, the doting mommy, started giving back the “slack.”  Hand-holding through homework, helping him get dressed, giving in to hours of unearned computer time -- and forgetting about the tickets.

It seemed that all those nay-sayers were right. This process wasn’t working for us.  We started to believe that just as all the other times, Alex had figured out how to “dodge the system.”  He was manipulating us and getting exactly what he wanted.  Our perfect plan had failed us. 

Tara Kennedy-Kline /
Tara Kennedy-Kline, her husband, Chris Kline, and their sons Alex (left) and Max.

I found myself right back where we started, at my wits’ end.  Then I attended an event for a book I wrote before all this started, called “Stop Raising Einstein.”  One of the attendees asked about our appearance on TODAY and how things were going for us.  I began to spill out all the negative stuff we were dealing with, and how difficult it is to raise a special-needs child who is smarter than the experts who claim to know how to fix him. Then I stopped. As I was hearing my own words, it occurred to me that it wasn’t the process that was failing us. WE were failing in the process! The reason we were failing is because we expected it to be PERFECT! We expected all those good behaviors to just continue because we had started the ball rolling. We got cocky and we got lazy, and Alex was the only one smart enough to pick up on it. 

When I arrived home from that event, I walked in to find my Alex with tears running down his face, sitting with a math paper in front of him, his father standing over him.  Luckily, I had three things with me: a positive attitude, a bowl of chocolate truffles and tickets, and I knew immediately I would need all of them!

I had to tag in for my husband because he was clearly not in the right place to get anything accomplished in that moment. I laid five tickets on the table in front of my son and said, “Thank you for staying at the table even though I know you would rather run away. That’s worth a ticket to me.  Once you have earned all five tickets, you can take a break.” Then I asked him to finish question No. 1 on the paper. He complied, got another ticket -- and the spotlight was back on.

If I have learned anything in these last two months, the first thing would be to forgive myself. This process is about reshaping behavior, and that will not be quick or easy. It took 10 years to shape my son into who he is today; change will not happen over night. Second is that Alex is not the only one who needs to change. Everyone has flaws and we all make mistakes; that’s how we learn. And finally, never, ever give up! No one can stay in the spotlight all the time, and who would want to? It’s hot and blinding! But when we realize our role is just as important when we’re singing from the wings as it is standing center stage, we allow ourselves to focus less on being perfect and more on just being present. 

Related stories:

Finding calm in the storm: Saving my family from the chaos of autism

Why my daughter's Asperger's diagnosis was a relief

Tara Kennedy-Kline is president of Multi-Level Mom and the author of "Stop Raising Einstein: Discover the Unique Brilliance in Your Child… and You!" She and her family appeared on TODAY in April.