I am sitting here in my living room, feet up in a recliner, drinking a much-needed cup of coffee. One kiddo is off at school and one is at daycare, and my house is finally quiet. I know I should get up and start my workday, 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 “things.” A chewed-up family picture, an equally destroyed Nerf gun bullet, a few train DVDs, and a stack of blankies.
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 has 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 ways that two people felt grief. It created a crack in our foundation that grew over time.
I can’t help but take a little trip down memory lane to when my ex-husband and I were engaged. We were married in the Lutheran faith and had to give up our precious weekend to attend a weekend of premarital counseling sessions. It seemed completely unnecessary because we were madly in love.
The class we had to attend 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 Pastor Phil asking that question. I can even see the moment. He said it so casually, so matter-of-factly. 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 with 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.
The crack started small. It was barely noticeable to the outside eye.
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 throughout most of his infancy. 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 who were lost.
We started to disagree about everything. My then-husband thought we should keep living life the way we had pre-autism. He saw all of our friends with young babies doing all the things that families do. He thought we shouldn’t change our lives. He thought our son was fine. I knew he wasn’t.
Then the financial strain 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 — and with that so was I.
I took the lead on coordinating our son’s care. It was a role that completely consumed me in the end, and I felt that no one could help our son Cooper as much as I could; I was the best at it. I started to think that everyone else was inferior and began to hate my husband for his lack of understanding and urgency.
Before we had children, one of my favorite things about him was his laid-back personality. It was the perfect match for my energy. But after autism it was the thing I hated the most about him.
No matter how intense our life got, he stayed calm. I was on this roller coaster alone — 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 to make him see the severity of our situation. I started sending him blogs and articles to read about autism. And I’d barely get a nod from him. Sure, he promised he’d read them, but he never did. I’d make him watch Parenthood and YouTube videos of nonverbal kids. He’d barely give any of them a glance.
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 save our son, and my hope would be renewed. I would be on top of the world — until it inevitably failed.
And with each failure the resentment built between me and my husband. He resented my willingness to try new things, and I resented his need to keep our son the same. Every time he downplayed our son’s disability and acted like my concern was an overreaction, I fell a little bit out of love.
It became easier to carry the weight of autism alone. I made the decisions. I dealt with the consequences. And with that, I became unrecognizable to my husband, but I didn’t recognize the martyr I had become.
He wondered what had happened to the woman he married. The loving woman who was vivacious, fearless, and adventurous. This new version of me was untouchable.
What my husband truly needed from me hung in the air — always between us. He expected me to get over it. He expected me to cry my tears, dust myself off, and keep living like he was.
He didn’t understand that I couldn’t possibly do that. My heart was broken, and his wasn’t. And unbeknownst to us, the final crack had surfaced. He expected me to move on. He expected me to continue living a life that was more than autism. He expected me to see that our son was happy just the way he was and accept our situation.
At that time, I couldn’t do it. I wasn’t ready. I had to fix me first. I had built a wall around me so big and so tall that no one could touch me.
My husband didn’t dwell on missed moments like I did. He didn’t spend hours agonizing about missed words and milestones. He didn’t feel the pain like I did. And now looking back, I think that was okay. If both of us grieved the same way, I’m not sure either of us would have survived.
Somewhere between our son’s 4th and 5th birthdays, my husband and I 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 my marriage.
What it did do, though, was show how two people who love each other can react differently to a given situation. We blamed each other for grieving in our own ways, but neither was wrong.
Parenting a child with a disability is of immense gravity, and it’s 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 opportunities. And we sacrificed ourselves in the process.
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 rock bottoms.
I had come full circle. I had become my son’s disability. I had pushed everyone in my life away to focus on autism. The wall I’d built around me was then so high and so strong that I was completely and utterly alone.
I was a martyr. And I was completely alone.
I waved my 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, and in the process, I had wrecked our marriage. I had made so many mistakes. I had tried to fill the hole in my heart by chasing a different life.
I told my 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. I cried the tears and finally spoke the apology that so needed to be said out loud to him.
I told him that I felt like I was meant to carry our son’s disability alone, that I wasn’t meant to be happy, and that I finally accepted it. That was when the man who usually showed 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.
It finally dawned on me that he was on the roller coaster too. He never got off. 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. He didn’t see autism as a problem to be fixed. He didn’t carry the torch against it either.
What he did do was love our son. He stepped up like so many people wouldn’t have done. He kept his patience during the chaos. He continues to change diapers as our son ages.
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 was needed to help. 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 spoken out loud.
At last, the healing could begin. Two broken people, loving a perfect little boy, who were so thankful to have failed at divorce.