Dan McNeil, left, and his son Patrick

McNeil family

McNeil: Reflecting On World Autism Awareness Day

Everything happens for a reason, even if it's not immediately visible.

Dan McNeil
April 02, 2018 - 1:52 pm

By Dan McNeil--

(670 The Score) Bad news travels fast. When unfortunate events shake us, be it an unexpected death, the diagnosis of a serious illness or merely the disappointment of worldly expectations unfulfilled, those who care about us line up to express their compassion.

The aim of families and friends is true, but rarely do their words actually provide comfort. Typically, the fumble for words results in a clumsy exchange of hollow cliches. 

"This is going to make you stronger, a better man" has been offered by many in times of crisis.

"God only gives the biggest challenges to those whose shoulders are broad enough to carry it," they might say.   

And, perhaps my favorite, "Everything happens for a reason."

When your child is banging his head on a hard tile floor, frustrated because he doesn't possess the neurological wiring to communicate his needs, it becomes difficult to see God. It doesn't appear there is anything "holy" within a thousand miles.

Patrick's big brother, Van, slumped in his chair. His face fell into his hands and tears trickled from between his fingers and onto his homework. First grade never should try a boy's soul so harshly. 

I scooped up my wailing son and attempted to console him. A calm place was elusive. It often is with autistic children. 

That was in 1996. I was 35 and Patrick, my second of three sons, had just been diagnosed with autism. Twenty-plus years ago, autism hadn't reached the tipping point in American culture. Few had a grasp of its treatment plans and potential causes, and there weren't facilities devoted exclusively to clinical solutions specific to the disorder.

I was terrified, overwhelmed, angry at the world. My world had been turned upside-down. Instead of staring my challenges in the face and tackling them one-by-one, I responded like a petulant brat.

Patrick's mother, Jill, rolled up her sleeves and went to work. She immersed herself in behavioral solutions, familiarizing herself and all of us with terms such as applied behavioral analysis (ABA), picture exchange communication systems (PECS) and reinforcers.  Eventually, Jill became an accredited behavioral therapist, was named Indiana Autism Advocate of the Year and now owns and operates a clinic for autistic children in Northwest Indiana. 

Me? I brooded. I resented people who had it easier than we did and didn't seem to appreciate it. I provided for my family and was always present, but my heart was hard and my disposition grew to toxic levels. I was angry. I regularly self-medicated and ran from my problems instead of confronting them.

What kind of a loving God sentences a child to such depth and despair? How can he can he do this to Patrick and myfamily? How can he do this to me?  

Boys who grew up in the 1960s as I did were raised to be the dominant force in the home. We had to be smart, strong and resourceful. We were "the heads of the household," and it was incumbent on us to play the role of "the fixer."

Well, this wasn't changing a tire. It wasn't fixing a household appliance or getting us un-lost after a wrong turn on a family vacation. Patrick's autism redefined any previous feelings that I had experienced about the terror of helplessness. I felt powerless.

Like many autistic infants and children, Patrick was withdrawn. Symptoms and their degrees vary, but it's fairly common for those on the spectrum to avoid social interaction. Speaking is difficult, and eye contact means communication becomes essential. Patrick didn't want that because it was a stark reminder of what he couldn't do -- make speech.

He would isolate. While Pat possessed many of the problem-solving skills typical of children his age -- video gaming including -- he was much more content living in his own private Idaho. His obsessive-compulsive behaviors included a fascination with anything motorized. Even at six or seven, he regularly would camp out in his room, stripped to his undies, playing with the vacuum cleaner.

He hated clothes, too. Still does.

About four years ago, I began writing a book that chronicles Patrick's early imprisonment and eventual growth, along with how his challenges affected his brothers, Van and Jack; his mother;  me; and my wife of almost 12 years, Sheri. In my book, the working title of which is "Tickle Me, Daddy," I illuminate all of the sordid details from the toughest years of our lives. The story evolves into an inspiring, often humorous account of our journey, but it's necessary to relive the hardship.

It's essential because those who recently have found themselves in the same chair in which I sat in the '90s need to learn they aren't alone. Autism became an American epidemic, and it's estimated one in every 88 children born in the United States has a form of it. The incidence is even higher among boys.

I wanted to write this book because I'm hopeful "special fathers" will read it and find comfort. My wish is they see my character flaws and avoid making the same mistakes. I want to get this book out so others, in their most desperate time of need, can give hope to the idea there is a pot of gold at the end of the rainbow -- a rainbow which, for at least five years, disguised itself as a deadly tornado.

The resentment and anger that I first experienced only postponed my growth as a father. It's avoidable. 

Fast forwarding to today, which is World Autism Awareness Day, I can look in the mirror and not be embarrassed. My relief over Patrick's growth has been enormous, a real tribute to his effort, that of his selfless mother, his sweet brothers and all of his family members and those we've been lucky enough to have on his "team" over the years.

He's 24 now. He's calmer and becoming more socially motivated. He still attends treatment daily and has a few weekly "jobs" at a nearby business. His therapist takes him to perform simple custodial duties, and he does it for the "fun of it." Money is a concept that remains foreign to him.  

We share many activities. Like the old man, Patrick loves being on the water, so our summers include recreational boating, tubing. Every summer, just he and I take our annual pilgrimage to Mears, Michigan, for go-karts, swimming and the dune-buggy thing. He strenuously objected two years ago when I asked him if Van and Jack could go.

Patrick has exclusivity on Silver Lake. And he's in command of all the tunes on the commute.     

He always has enjoyed singing. Years back, I learned it's a different part of the brain that controls singing, opposed to speech, and it always was easier for him to sing than to speak. He sang the national anthem at a charity golf outing that I chaired a decade back. Ron Kittle, the former White Sox slugger who still has the body of a 20-something lumberjack, was among those who wept tears of joy.

At events or anywhere Patrick goes, he isn't bridled by vanity. So if he misses a high note on the anthem, he doesn't apologize. There isn't a competitive bone in his body. He never has kept score. 

My son doesn't covet material possessions. He once asked for bacon for Christmas.

Patrick isn't governed by what is commonly regarded as acceptable behavior.  He'll pick his nose in line at the movies. He's oblivious to violating anybody's sensibilities. 

He still has the spirit of a five-year-old, always desirous of quality time with his dad. He can take care of himself, but I still shampoo his hair a few times each week. I still cuddle with him and tickle him, and he still loves it. He's innocent and sweet. 

I've had so much to be grateful for in my life. I've lived recklessly but lived to talk about it. I've had good fortune in my chosen craft and have had employers exhibit enormous patience with my shortcomings. Not once, but twice, a bright, beautiful woman stood beside me and said "I do." All three of my sons still desire spending time with me, and all three share at least a couple of my hobbies and passions.

But more than anything, I have enormous gratitude for what Patrick has done for me. Without him, I wouldn't ever have seen who I could become, who I really am. 

I am Patrick's daddy. And that's all I need to be to really understand my purpose. 

Things really do happen for a reason. They're just not that visible until the focus widens.

Dan McNeil is a co-host of the "McNeil and Parkins Show" in afternoons. You can follow him on Twitter @DannyMac670.