I am sitting here in my living room, feet up in a recliner, drinking a much-needed cup of coffee. One kiddo is off to school and one is at daycare and my house is finally quiet. I know I should get up and start my work day but I am distracted. I have been staring at the stack of my divorce papers for 15 minutes. I find a bit of irony in the fact that they are covered with our autistic son’s treasures. A few chewed-up family pictures, an equally destroyed Nerf gun bullet, a few train DVDs, and a stack of blankies. Our world is autism. It has been for six years.
For years I blamed the breakdown of my marriage on autism. The sheer stress of it. The weight of it. The chaos that surrounded us the instant we received the diagnosis. Autism had its own force. I often refer to it as a tornado. In order to help our son we had to give up complete control of our lives and follow its path. At times it was all too much. It was more than two people could handle.
I was wrong, though. Autism didn’t cause our divorce. The heartbreak of it did. And the different way that two people perceived grief. It created a crack in our foundation that grew over time.
A bit of foreshadowing
I can’t help but take a little trip down memory lane to when Jamie and I were engaged. We were married in the Lutheran faith and had to give up our precious weekend to attend a weekend of pre-marital counseling sessions. It was long and seemed completely unnecessary because we were madly in love.
The class was centered on "deep" questions that prompted discussion between couples. How would you handle a partner with an addiction? Or a partner who lies? A partner who gambles? We obviously didn’t have those problems since we were best friends so we breezed through. Oh, the arrogance of 20-something kids.
The final question, at the end of weekend was, “How would the two of you handle having a child with special needs?” I can still remember the Pastor asking that question. I can even see it. He said it so casually. So matter-of-factually. It is burned in my brain now. The foreshadowing is not lost on me.
I remember thinking what a silly question. That wouldn’t happen to us. We were healthy and invincible. I think we scribbled down on the paper… we’d love that baby just like any other baby. We were both good people. Huge hearts. And that was that. The class was done and we were off to live our fairy tale life. We were married. A home was purchased. Careers were started. And babies were born. Our life had begun.
And with a blink of an eye we were the parents to a nonverbal little boy with severe autism and the crack in the foundation of our marriage was formed. Just like that.
A crack in the foundation
To say our son was a challenging baby is an understatement. He didn’t sleep through the night for four years. We functioned in a constant state of exhaustion. He screamed most of his infancy. He was never content. He struggled to eat. He struggled to poop. He had never-ending severe ear infections and multiple tubal surgeries. He missed milestones. We even had a few misdiagnoses. And the pressure on our little family started to build. We chased hope for our son all over the state. It felt like we were living our lives in doctors’ offices. We moved three times, all for more services for our kiddo. God that was hard. We started to feel the strains of the isolation. We missed the friends that were lost.
We started to disagree on everything. My husband thought we should keep living our pre-autism life. He saw all of our friends with young babies doing all the things that families do. He wanted that to be us. He thought our son was fine. I knew he wasn’t. I tried for a while, though. I would spend events chasing Cooper. Or in the car so Coop’s could watch a DVD. Or worse yet, I’d have to leave in the middle of the night. I'd always let Jamie stay. I did that because I was Cooper's person. It was just easier that way.
Photo credit: Melanie J. Gunderson
Then the financial strains kicked in. One of us had to quit our job to meet the demands of autism. And boy did that interfere with the high price tag on all the private therapy.
The crack intensified. I could feel the perfect life I had pictured slipping away.
I took the lead on coordinating our son’s care. A role that completely consumed me in the end. I felt that no one could help Cooper as much as I could. I was the best at it. I started to feel that everyone else was inferior. I started to hate my husband for his lack of understanding and urgency.
Before we had children one of my favorite things about my husband was his laidback personality. It was the perfect match for my energy.
And after autism it was the thing I hated the most about him.
Riding the roller coaster of autism
No matter how intense our life got, he stayed calm. I felt like I was on the roller coaster alone. I was researching, finding therapies, fighting insurance companies, battling the county and the school district. And no matter what, I did I couldn’t get him to sit with me on the ride.
So, I tried harder. I made it my mission. I had to make him see the severity of our situation. I started manically sending him blogs and articles to read about autism. And I’d barely get a nod from him. He promised he’d read them… but never did. I’d make him watch "Parenthood" and YouTube videos of nonverbal kids. He’d barely give it a glance.
Photo credit: Melanie J. Gunderson
Our conversations soon became about our son’s care… and solely his care. I’d talk about new therapies with a renewed spirit almost weekly. I’d find a new diet or tactic that was going to help our son. My hope would be renewed. I would be on top of the world. Until it failed.
I began carrying it alone
And with each failure, the resentment built between us. He resented my willingness to try new things and I resented his need to keep our son the same. It became easier to carry the weight of autism alone. I made the decisions. I dealt with the consequences.
I know he wondered what had happened to the woman he married. The woman who was vivacious, fearless and adventurous. What he didn’t know was, I barely recognized myself. And yet, I blamed him for not knowing me. For not seeing me. For not seeing how sad and scared I truly was.
What he needed from me hung in the air. Always between us. My husband expected me to get over autism. He expected me to cry my tears, dust myself off, and keep living.
He didn’t understand that I couldn’t do that. My heart was broken. And his wasn’t. And unbeknownst to us the final crack had surfaced.
I had become my son’s disability
Somewhere between ages 4 and 5 we became strangers. The resentment got to be too much. And in the blink of an eye we were divorced.
I will not say that having a child with special needs caused our divorce. Because it didn’t. Autism wasn’t the problem. And it didn’t ruin our marriage.
What it did do, though, was show how two people, who love each other, can react to a given situation. We blamed each other for grieving in our own ways. Neither was wrong.
Parenting a child with a disability is huge and life-changing. What we went through was traumatic. That’s a fact. And through it all we kept our son’s care at the center of our lives. We gave him the best possible life and opportunity. We sacrificed ourselves in the process.
Waving the white flag
Six months after our divorce was final, after moving again, after the anger, after the ugly crying, after seeing our autistic son finally get the help he needed, we met for lunch. We had both hit our bottoms.
I had come full circle. I saw what I had become. I had pushed everyone in my life away to focus on autism. I built the wall around me so high and so strong that I was completely and utterly alone. And I didn't even recognize myself.
I was a martyr waving her white flag.
In a crowded restaurant, over chips and salsa, I told him I couldn’t carry the weight of our son’s disability alone anymore. I felt like a failure. I had completely given up my life to fix him and at the end of the day he was still severely autistic. I had failed. I had wrecked my marriage. I had made so many mistakes. I had tried to fill the hole in my heart by chasing a different life.
I told him that for years I blamed him for our struggles and ultimately his reaction to our son’s autism. I blamed him because he was the adult and I couldn’t blame a child. I told him I was wrong. And I cried the tears and said the apology that so needed to be said out loud.
I told him that I felt like I was meant to carry our son’s disability alone. I wasn’t meant to be happy. And that I finally accepted it.
And the man that shows very little emotion reached across the table and put his hand on mine. And just like that my defenses came down and I lost it. For the first time in this six-year journey, he said the words I needed to hear.
He thanked me for sacrificing myself for our child. He thanked me for stepping up and fighting when he couldn’t. He apologized for not being the man I needed. And he told me that I saved our son.
I asked him why he didn’t research autism like I did. His exact words: ”I lived autism, Kate. I didn’t need to read about it. It just made me way too sad.” And just like that it dawned on me that he was on the roller coaster… just in his own way.
I was wrong, too
I realized he had never left. I had been too clouded by my own grief to see that.
No, he didn’t cry the same amount of tears or agonize like I did. What he did do, though, was love our son unconditionally.
He figured out how to connect with him in a way I thought only I could. He sat with him and watched his trains endlessly. He wrestled him and tickled him. He went to every appointment with me. He never missed one. He stepped up like so many people wouldn’t have done. He kept his patience during the chaos. He loved his autistic son more than life.
I realized that if we both would have been at my intensity level we would have crashed and burned around our son’s care.
And just like that, the weight was lifted. I let out the breath I had been holding for six long years.
He told me he’d do whatever he needed me to do to help. He said I was no longer alone with autism. We would do it together.
The words of validation that I needed to hear so desperately were finally said out loud.
And, just like that, the healing began. Two broken people, loving a perfect little boy, who were so thankful to have failed at divorce. And for the opportunity to try once again.
(Update: Because I know that so many of you are curious, Jamie and I are happily back together. Our separation relieved the pressure that had built up between us. Sometimes two people have to come apart to find out what really matters. We are both incredibly thankful for fresh starts and amazing kiddos.)