THE BLOG

Vegas or Bust: Living with Autism

We were enjoying dinner in Birmingham with friends in March 2015 when we got the call.

Our son, John Harper, was staying overnight with my parents, but he was largely uncommunicative as he paced the floors. My dad called to let me know what was going on and I told him John Harper had exhibited some of that type of behavior lately and not to worry too much about it.

But that night when it was bedtime he couldn't sit still and stayed up for hours.

As the behavior continued into the next week, I reflected that John Harper had been crying a lot more often and went through a phase where he'd chew his T-shirts frequently.

And as days grew into weeks, things continued to grow worse: John Harper begin exhibiting extreme separation anxiety, having meltdowns sometimes when his mother, Amy, simply left the room. He spoke very little and was easily upset. He was nothing like the quiet, curious and intelligent boy he'd been less than a month before.

We took John Harper to a series of doctors over the next several months, who ran a multitude of tests. The best-case scenario was an infection might have resulted in a neurological syndrome that would improve over time. But the most likely explanation is that John Harper has childhood disintegrative disorder, an extremely rare form of autism that only affects about 1 in 100,000 children. That makes it more than 100 times as rare as autism in general. Children with CDD develop normally before experiencing a severe regression in cognitive function at an early age. Most of them don't see significant improvement over time.

Now, more than a year after our lives were turned upside down, things are looking up. John Harper, now 6, attends a special-needs school and is eager to attend every day. He sometimes speaks in complete sentences and he is generally OK with one of his parents being away from him (although rarely is he not around at least one of us.) John Harper plays well with his 2-year-old sister, Sarah Beth, although sometimes she drives him nuts by trying to tackle him. (Autistic kids generally disdain much physical contact.)

Obviously, it was with some trepidation that I began pursuing a book deal to play in and cover the World Series of Poker this year. Amy and I were worried how he'd respond to being away from his home for six weeks, but we also knew he could very well be as upset at home because he won't get to go to school either. Reflecting back on how well John Harper enjoyed our family vacation to the Smoky Mountains last fall, I'm optimistic he'll have fun on this trip. He seems to like traveling, and he absolutely loves pools, which we'll have in the backyard and can dip in every day. We'll make sure he gets to enjoy the best the area has to offer for children, including a trip to Disneyland.

If we've learned one thing from the past year living with autism it's that you can't let it get you down and stop having a normal life. We want to make the most of ours, and our children's. Opportunity knocks, so off we head to Vegas.