As Cindy and I discussed launching this blog, we both figured we would have plenty of topics to write about on a weekly basis. Nolan’s never-ending, Autism-related gastrointestinal issues? That’s a blog entry – and a well-written one at that, dear. Nolan’s trepidation around anything with four legs that isn’t our cats? That’s a blog entry. The positive effect watching RiffTrax can have on a father who has spent the day cooped up inside with a son who missed school because he had explosive diarrhea? A bit weak, but hey, that’s a blog entry. Think of us as Jerry Seinfeld and George Costanza: This is a blog about nothing. You reading this, NBC?
A lot of you know at least part of our backstory. For years we’ve been sharing on Facebook, and in person, what it’s like to raise a son who has Autism and is nonverbal. But I’m sure a lot of you likely don’t know everything, and how we got to where we are today. That’s the subject of today’s post.
(Cue the dream sequence music and the screen that dissolves into a scene in the past. Or think of Wayne and Garth’s interpretation of a flashback if you so choose and it makes you smile).
It’s late July, 2008. Cindy and I are sitting at a table in a room at Gundersen Health System in La Crosse facing several doctors and other professionals. We’ve just completed several days of an arena assessment that will confirm what we already know: Nolan has Autism Spectrum Disorder. He’s barely 2½ years old, but he’s been diagnosed with a condition that will be a part of his life – our lives – forever. The staff at Gundersen had spent a considerable amount of time and effort working with Nolan. They simply wanted us to know exactly what we were dealing with so we could proceed accordingly. Yet in a way it felt in the moment like they were passing sentence on us. We’d be locked up for life in Folsom or Leavenworth with a child with a myriad of challenges, including not being able to sleep well. Now we had one more thing that would keep us up at night.
It had been a rough year. I’d lost my mom to Cancer barely a month earlier. I was now my father’s power of attorney and primary caregiver, and his Multiple Sclerosis was progressing and eventually would take him from me in 2009. My job as a Tribune sportswriter was getting even more stressful than it already was. And yet, unlike four months earlier when Nolan’s then-pediatrician first floated the possibility my son had Autism, I didn’t cry. I simply told the doctors Cindy and I would do whatever it took to help Nolan.
Nothing can really prepare parents for what lies ahead when they’re told they have a child with special needs, but I knew it would be difficult. I had to try to forget that just seven months earlier Nolan had been clearly saying the words he saw in “My Very First Book of Words” by Eric Carle (“He pointed at the car and said ‘car!’ My boy is a freaking genius! He’ll be reading ‘Moby Dick’ by the time he’s in preschool!’). I had to try to forget the video Cindy had sent me one night at work during the summer of 2007 when Nolan stood in his crib, said, ‘Hi, daddy!’ and started saying some of the letters of the alphabet that were on his bedroom wall. The few words he had just vanished in early 2008. I’d been too damn busy to notice because of the fucking job. I wanted to believe the words would come back. I did believe they would come back. I waited for them to come back. I’m still waiting, and I always will wait and hope.
There was a sense of dread in my gut that day at Gundersen, but there also was optimism, believe it or not. Over the years, Nolan has been blessed to come in contact with some amazing people – teachers, paraprofessionals, college-aged line therapists, and doctors. These folks, some of whom you likely will become acquainted with in future posts, are true angels and saints on Earth. They have been patient working with a boy who can one minute be doing what they ask and the next he’s yelling at 100 decibels, biting his hand and hitting his head, or charging at them as if they were holding a red cape. They have taught Cindy and I a lot, and their lessons have made us look like better parents than we really are. Nolan has progressed a lot over the last 11 years. I can’t thank them enough for that.
Yeah, deep down I still wish I could be sharing stories of Nolan’s academic successes and prowess on the football field, basketball court, and baseball diamond, as I envisioned myself doing pre-Autism diagnosis. But Cindy and I are eager to share a blog about nothing with the masses. Jerry Seinfeld got nine seasons out of his show. We’ll have a lifetime of stories.