The cement mixer
As a dad, when your child is diagnosed with an autism spectrum disorder, you go through many different thoughts and emotions. Most are heavy and deep. Much like cement in a mixer. One by one, they come to the surface as your mind evaluates what is ahead for you, your child and your family. Slowly the cement hardens into a resolve as you chart your course of action.
In our family, it was no different. My wife and I have four kids: Our oldest son is dealing with Asperger Syndrome and our youngest son was diagnosed with autism almost seven years ago at the age of 18 months. We have a son and a daughter in between who are not on the spectrum.
By the time our youngest was a few months old, we could see that he was not hitting the same developmental milestones that our other kids had. My wife started getting therapists (physical, occupational and speech-language) in to evaluate and help out. The therapists were very careful NOT to diagnose, but they were AMAZING at helping Jordan develop where he had not been able to before.
By the time Jordan was 18 months old, I was looking forward to getting a complete diagnosis as a means of getting him the help he needed and to put a name on what was “holding him back.” I kept asking my wife, “Why can’t we just put a name to this?” I thought it was going to be easy and that the neurologist was going to smile and say, “Folks, your son has autism (or PDD or Asperger’s)” and that would be that.
The cement mixer was already churning and I just wanted solid answers. It didn’t turn out that way, however.
Enter the neurologist. After examining Jordan and talking with us, he told us that he thought our son had autism. He looked at me and said, “That’s what you wanted, right, a diagnosis?” He then proceeded to let us know what the probabilities were for everything that could go wrong (or right) for Jordan over the course of his life. “He has such and such percent chance of not talking … or being mentally retarded … or not being able to live independently … or …” It all kind of droned together, and I ceased listening and became numb. The cement mixer churned a little faster that day as I found myself coming to grips with the new reality of things.
Knowing that your son is not meeting some developmental milestones and hearing that he might not talk or ever be independent was not far from my mind and the information came crashing together with surprising force that day. As the cement mixer inside of me churned, several repeating thoughts that floated to the top.
I was concerned about the life plans that my wife and I had made. We married and started a family quickly with the thought that we had a few extra “golden years” where we could enjoy grandkids and do missionary work in Korea (where we met originally). This line of thinking was immediately followed by guilt for being so selfish as to think about “us,” but I couldn’t help it. The news about Jordan was altering our life plan, and the trepidation that I felt about it was real. The feelings churned some more …
Both Jen and I grew up with a strong sense of faith. Part of that is accepting that God had a plan for each of us and that we are all given obstacles as part of our life’s journey. My mind was at peace when I thought of my own experience. My twin brother and I were born 10 weeks premature and the doctors had told my parents similar things to what I had heard. I turned out fine after overcoming a few obstacles, so why not Jordan?
Our faith as a couple led us to look less for a cure and more towards being in the “obstacle removal business.” We discussed it on the way home from the neurologist. We decided that we were going to help Jordan fulfill what God had in store for him and we were going to subordinate our desires for what we wanted him to be.
This was a very “freeing” experience for me. “Maybe God has enough basketball players on earth; maybe he needs another scientist instead …” I told myself little affirmations like this to keep things on track and keep my confidence level up.
More churning …
How do I help? My thoughts turned to all of those “Super-Dads” out there. The ones who leap tall buildings in a single bound, cure their kids of whatever ails them, raise awareness, start a foundation, and a name the wing of the local hospital after their son. I did not fit that mold. Being an activist wasn’t the right way for me. Some days I wished I were one of them, but I just wasn’t.
Instead, my wife was naturally suited to be an advocate for Jordan. She has a degree in teaching and was known and well liked in our school district. She has a knack for finding the right people, knowing something is a good fit for our son and establishing rapport with them to get the help needed. If my role was not the activist or the advocate, was it OK to be “just” a supportive dad? Would I be helping enough in that role? Maybe I could be the source of “normal” in our family. Maybe the right role for me to play was just to be dad … These and other thoughts filled my head.
All kids like to have fun, to play games and to be inside their comfort zone at times. Autism doesn’t change that. It just makes them have different (and sometimes smaller) comfort zones. We needed money to pay therapists to work with Jordan. My middle kids needed to feel that they were not being overlooked. I decided that my role was to supply that comfort zone to each of our kids on their level, to help facilitate therapists and to provide general support where needed.
More churning …
What will it be like for Jordan? Since I didn’t view Jordan’s autism as something that needed to be “cured,” but as an obstacle that he needed help with, I started exploring what he needed.
Jen and I took a lot of time to research possible therapies and strategies for dealing with autism. That seemed to be the only way for me to calm my fears. And yes, they were fears.
In the meantime, everyone seemed to have their own opinion about autism and what we should do. More often than not, everyone REALLY wanted to help, but was unsure HOW.
For example, when we started to reduce the gluten and casein part of Jordan’s diet, we were met with one grandparent slipping him ice cream cones on the side and others evaluating and asking “why” about everything … Why do they say that gluten and casein are bad? Why does he have autism? Genetically, whose “fault” is it? The questions and opinions seemed unending.
From my point of view as a dad, I wanted to scream at ALL of them. We weren’t even going on a strict gluten- and casein-free diet. We were simply reducing the amounts that Jordan consumed to see what the effects would be. I just wanted to fix things …that’s what guys are supposed to do, right?
What came out of all the churning was a feeling of resolve. It was a unity between my wife and I on how to proceed. We decided that we were going to enlist the help of the best people we could find to help Jordan and that we were going to pray for guidance as to who these people were.
I was not going to be an activist for Jordan. Rather, I’d be a father and husband who was supportive of Jordan and helpful to Jen in being his advocate. I was going to be the “Director of Normalcy” for our home and try to keep it a safe comfort zone for everyone.