I Blamed Autism for My Divorce
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 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 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 J 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 that 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 twenty-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 him. 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. 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 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 misdiagnosis. 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 3 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. Keeping up the act that he was just a busy child. Or I’d sit in the car so Coop’s could watch a DVD.
Or worse yet, I’d have to leave in the middle of the night.
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 laid back 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.
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. Until I 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.
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.
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. And when I found it, I felt more alone than ever. My son was still severely autistic…just in a different house.
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
He 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. He also didn’t see autism as a problem to be fixed. What he did do was love our son.
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.
And it dawned on me that he reached acceptance long before I had.
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. We remarried in 2018. 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.)
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
Hiya. I have a similar situation. My 4yo son is awaiting an assessment for Autism. I have some days where I don’t know how I will pull through (Son is verbal and v. Intelligent. Very active and hardly sits still) His dad is so, so supportive of my son and I. We couldn’t ask for more. Although when it comes to any mention of the word Autism a wall goes up. He’s not even willing to discuss it with me. I get it! He is worried about how a label may hold him back. He is worried our son will be picked on. I think he is well and truly stuck in the denial phase. He won’t talk to me about it and I am beginning to resent him. I deal with any appointments and meetings regarding that side of it. I need him to be there to support me and I need him to tell me what his feelings are otherwise nothing good will come of any of this.
This post describes me and my marriage so much. Thankfully, we haven’t gotten divorced, but there have been times where I too desperately wanted to fix my autistic son and didn’t understand and resented my husband for not wanting to fix him like I did. I thought he didn’t care and maybe I’d be better off doing it on my own.
But I see now that he grieved in a different way, like your husband, and that our son doesn’t need to fixed. He’s fine just the way he is, and he’s happy. It was me who wasn’t okay with it. My husband loves our son and takes care of him. He cleans up poop and does what needs to be done to manage the chaos of our lives. This autism journey is a hard one and it’s understandable that the stress of it can destroy marriages.
I’m so grateful for your posts. You validate the difficult feelings I’ve faced in struggling to accept my life and make it okay. Thank you so much for sharing your life and helping me to feel okay about mine.
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[…] thought back to when Kate from Finding Cooper’s Voice wrote “I felt that no one could help Cooper as much as I could. I was the best at it.” It is exactly that line of thought that puts the pressure on to live the two […]
If love can conquer death, it can conquer anything. You are not broken but perfect. Love yourself first and be gentle my friend, gentle until the very end. Stand firm in love/God.
God, this is a beautiful piece. Amazing work.
thank you for sharing this. your words and story brought tears to my eyes.
I love reading your posts. I notice that you often refer to Jamie as Cooper’s dad, not “my husband “. I hope that your relationship continues to heal, and that everyday brings you closer to each other. You are both amazing people and you deserve to have a beautiful life together as partners in love, as well as parenting.
Than you so much for sharing something so personal. My marriage is taking a huge toll since the diagnosis I stared to resent my husband
Your words are so beautiful. I found myself crying at the end of your story. My heart was touched so deeply. Thank you so much! I am also happy you and your husband were able to come back together and he was finally able to see you and you him. In regards to your situation, I refer to Winston Churchill, “when you are going through hell, keep going.” That being said, take time to take care of yourself.
I got to the end of this and yelled, “NO WAY! YEAH!” when I saw you were back together. I have no doubt you could do this separately and still be successful in this journey, but I’m a sucker for a happy ending. I am so grateful I found this blog. I am a special needs gymnastics coach and I really needed to hear your words.
Hi, I am new here, and I just read this and saw your video, and hits home. My husband and I didn’t get a divorce, but our marriage is very strained because of this journey. We have two with Autism. Our 11 year old daughter is nonverbal, and our 8 year old daughter is verbal, but it is limited, and has behavioral issues. Our 22 year old son was never diagnosed, as I didn’t even know what Autism was back then, but now that I do know what it is, it explains a lot of his behaviors and quirks. I too have tried so many different things, like ABA therapy, supplements, hyperbaric chamber treatments, and speech therapy. Our house will never look like Martha Stewart lived here as we have holes in the walls, stains on the carpets and on the walls. Though I would give anything to get off this horrible ride called Autism, I will continue to put one foot in front of the other, and do all I can to help my kids live the best life possible, just like you are doing. 🙂 Thank you so sharing your journey with all of us. It helps so much to know I am not alone in this. Thank you!!
All I can say is wow this is my life exactly. I am a father and a husband who is going through your early stages of your story. I feel like this represents most aspects of our marriage with our 4 Year old son. He hasn’t been “diagionist” but tested and tested and tested. Canada and our health system is somewhat challenging to say the least, “free” as one would interpret but not entirely perfect. But all the videos, blogs and stories I have seen show many traits which our son represents of an autistic child. My wife and I have know each other for 20 years. We are in our mid 30’s and been married 10 years. We have helped each other through so many difficult challenges as we have grown together. Same exact feelings you had “If we got through that we can get through anything!!! – We are invincible. One day we both wished for children. We were so excited of this next step in our lives which we agreed on. We had all your typical dreams of a child/children they can love together. Cute, little, first word, first step, growing up, help out mom and dad with fun chores, sports, first day of school-highschool-college and so on. We had a boy and he’s amazing. A switch was turned with us to do anything we can to raise our son. Years gone by and we both noticed that there was something going on with our son. Ear issues, hearing issues, no response to conversation, no interaction with others, Croup attacks almost weekly, change in daily routines resulting in behaviour issues, non-verbal (this is a touchy subject) and so much more. We had him in swimming lessons and some days were amazing – others were so horrible for everyone we would have to leave. We have him in speech therapy – but little to no speech occurs. Mostly communication in the way of hand holding and pulling us to what he wants or needs. Unable to communicate with our 4 year old son has resulted in many many challenges im sure anyone reading this understands. It seems as if any speech he did have has gone to just physical communication. We have been told so many things from specialist, schools, assisted learning/daycare center representatives, Audiologists, Dr’s the list goes on but no one can really answer us. It’s literally tearing us down to a dark path as we are both taking all the frustrations on eachother. The feeling of unable to fix/help or improve your child’s well being is so difficult to process. With a system that seems to be so difficult to navigate through to get the help we need – this site is a milestone for me and hopefully us. I am a Dad – we “fix” things that are broken – but this…your story….. is hope. Thank you for sharing your story and allowing me to share mine.
Thank you for your story. It is very close to home for me and gives me hope.
Your story touches me. May God bless you and your husband with great strength, joy, peace and laughter. I have a daughter with a different disability, but our feelings are all the same. What can I say except, all of these parents should be showered with blessings and understanding from those around them!
Wow – tears! This is beautiful and so happy you were able to get through this trying time.
I feel like I am reading my own story. I don’t feel like anyone but Matt’s mom. He is severely autistic and nonverbal. He is always active and chews or eats anything. I live life in a constant state of anxiety. My husband is his stepfather and barely helps me or I dont
Accept the help. Sorry I hit the leave reply. I feel like my day is autism and my night is sleep when Matt sleeps. I feel like I am just a caregiver because he will never show me normal love. I am just glad you understand. Someone understands me and I am approaching Matt’s 10th birthday in six months. I do love him so much I just want a hug from him.
I didn’t want to need to be here. But I need to be here. One of my twins was just diagnosed with ASD and we are waiting for our other twin to be evaluated, but I already know she has it, too.
This is my situation too a tea
I have too sons on the autism spectrum and an undiagnosed husband
This is my life and it is filled with advocating for each child to ensure that they have the education and support that they need So thankful for your posts stay strong ❤️❤️
Thanks so much for sharing this very private part of your life. Please know that we understand. I pray every day for the same reconciliation for my husband and I. Your posts give me hope and courage.
My son has ASD (Autistic Spectrum Disorder) with OCD. He will be 18 next year. Today we brought him home after spending a week in the psych ward of a hospital. He has delusional thoughts.
We have been going through this with him since he was 8. I always knew there was something wrong with him. though I thought is was OCD. But no, he is on the autism spectrum with psychotic delusions. I suffer from an anxiety disorder. Runs in the family. So his screaming, violent outbursts and repetitive verbalization of his delusions makes me anxious as hell. I seriously considered leaving. During his worst meltdowns I become suicidal. Not that I want to die, just don’t want to go through this anymore.
But tomorrow is another day.
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