Chad’s Story. He is 36.
Watch the reading of Chad’s story from the Facing Autism Event.
Jackson’s heart is unbelievably big. I am most proud that he can see the good in others.
On his first day of kindergarten, a child who wanted Jackson’s eyeglasses bullied him. At one point, the child tried to grab them. Jackson held up his hand and said “No.” Eventually the bully did get the glasses and proceeded to break them. But Jackson stood up for himself.
No matter how much we want to be there for Jackson each moment, every day we send him off into a world that we fear is full of bullies and cruel jokes. Often Jackson eases our fears and surprises us with the kindness and love he brings and inspires.
At first there was denial.
Every father thinks his son is going to follow in his own footsteps. My father played college football, I played college football, and now I am going to get to watch my son carry on the tradition. That’s what I thought.
I played defensive end. Each play was a solvable problem: the other team was trying to advance the ball, I was the solution. Tackle them. I think a lot of guys are like this. As soon as we’re told there’s a problem, we want to fix it immediately. When there were concerns that Jackson had developmental delays, my way of facing the problem was thinking, “It’s not true; he’s just fine. He looks like a typical kid. He’s fine.”
Every time Allison, my wife, would bring up something about Jackson’s early childhood development, I would not want to talk about it. In hindsight, I was not very helpful. At two-years, Jackson was a little more delayed for his age group. He didn’t have a large vocabulary, but how large should it be at that age? As the eternal optimist, I just kept thinking, “Everything is fine, there is nothing wrong with Jackson; he’ll catch up.”
I was just looking for what I wanted to see. I was comforted by Jackson’s smiles when he would run to me, and I would throw him into the air. And I ignored the fact that once I put his feet back on the ground, he rarely made eye contact with anyone.
By the age of three he started to spin around in circles. It was impressive. I took the guy approach once again and would joke around saying Jackson is going to be the toughest ballerina in the world because that kid could pirouette like none other.
When Jackson and I went to the park, I would see other kids his age running around and playing. Jackson would only want to swing and not just for a few moments, we’re talking about an hour, two hours straight. I could see the difference in how they played and how he played. I could feel the difference.
Soon he was diagnosed with Pervasive Development Disorder, which is to say, he displays some of the symptoms on the autism spectrum but not all of them. Later that year at Riley Hospital in Indianapolis, the diagnosis would be that Jackson, my future pirouetting football player, was autistic.
I did not want to label him as being autistic. I didn’t want to believe it because once I allowed it in my mind, I knew it would become true in my heart. From now on, this is what we were facing and I wanted nothing to do with that. This wasn’t a problem you could just tackle.
I did not want to believe my son was on the Autism Spectrum. However, once I admitted it, I could only think about what kind of a life he was going to have now.
I would hold him and rock him to sleep or I would lay with him in his bed and smell his hair and pray that he would be able to enjoy life and be happy. There were moments where I was disappointed and discouraged but it was always for him. Not that I wanted him to be an all-star football player, but I just wanted him to have a good life.
Initially my wife and I were on two different islands. Allison was the advocate reading and educating herself. I would come home and the last thing I wanted to do was think about things, about autism. I just wanted to unplug and be at home and enjoy my family.
When I look back now, boy, I was a jerk.
Allison wanted to help our son, and I‘m telling her everything is going to be fine. She was fighting for our son; I was standing on the sidelines. I should have been right there with her, as her defensive end.
When I finally got on board and started walking side-by-side with her, it was more about how did Jackson’s day go. Was it a huge step back or a great step forward?
Then the biggest stress that autism brought to our family was how to get Jackson what he needed. Early intervention is so important. There’s a window until the age of seven where we had to get him everything he needed: therapy, speech therapy, and social groups, whatever it might be. You have to get them involved in everything even though they may fight it.
We understood the battle and the emotional and financial costs; we sacrificed and gave until we hurt.
Parker, our second son, is four. He calls Jackson, Bubba, and thinks he is made out of the moon and the stars. They are best buddies. We could not be happier. Parker has been fantastic; Jackson has looked out for him like a big brother would. Allison and I try to stay very cognizant on giving them equal amount of attention. There are times when it is one sided, but that is unfortunately unavoidable. We try to keep it equal and hold them to the same standards. I think this has helped Jackson become the person he is becoming. He has more challenges than Parker, but we still expect him to do well. As long as he’s giving his best, which is what is truly important to us.
Eventually, we figured out that all we could control was how it was going to affect us today. This made life more bearable. I have a partner in Allison who has borne a tremendous amount of that weight and responsibility. I try to be the moral support. She was and still is an incredible voice for Jackson. She is behind the scenes making it all happen, working with him at home.
If I could rewind the clock it would be that I jumped in with two feet. Allison did and she needed someone to jump in with her.
Remember that kindergarten bully? Well, a few months after he had bullied Jackson, an older boy was bullying the bully. Jackson got in between the older boy and his classmate and said, “Quit bullying my friend. That’s not nice. Go pick on someone your own size.” The older kid turned and walked away.
I wish I had known earlier how much of a fighter Jackson was. He does not know any differently. To him, he just knows, “I have to work my tail off.” He has done so well with everything that has been laid out in front of him.
As parents our job is to lead our children, but sometimes our children lead us.
I never thought about things this way until the company I work for sent me through the Lead ECI Leadership Training program. During one of the sessions, they asked me to think about the one person who has really impacted my life. I thought of Jackson and the struggles he faces every day. Yet he gets up in the morning with the same amount of enthusiasm to take that day on as he did the day before and the day before that.
I told the group that my son has taught me to never give up. Don’t ever think of throwing in that towel.
While telling everyone, I wept. The tears weren’t of grief or mourning. They existed at a moment, when this grown man, a former college football player, realized that his young son was his hero.
As told to Tom Steiner by Chad Shelley.
Tom lives in Muncie with his wife and 15-year-old daughter who is on the autism spectrum and attends high school. When not working as a business advisor for the ISBDC or rehabbing his house in the Historic Emily Kimbrough Neighborhood, Tom is always looking for new and interesting challenges.
Chad is the current president of Interlock. If you connected with his story, you can reach him at www.interlockin.org.
To hear more stories like Chad’s, be sure to check out the Facing Autism in Muncie Monologues on November 2nd at Civic Theatre.