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.

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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 it. 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 4 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 few misdiagnosis’s. 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. 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.

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 was on this 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.

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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.

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.

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 6 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.

And just like that it dawned on me that he was on the roller coaster…in his own way. 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 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 loved his Autistic son more than life.

And just like that the weight was lifted. I let out the breath I had been holding for 6 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.

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Kacie K Photography

 

 

 

 

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I Will Carry Cooper For You Mom

DSC_3036 copySawyer has started this new thing where he makes sure Cooper is included in everything we do. I’ll say…’we are going swimming tomorrow’. And he will immediately say…’can Cooper go too?’ It’s adorable. And most times the answer is yes. ‘Of course your brother can go.’ But sometimes there are things that Cooper simply cannot do.

Sawyer has a memory of going to the fair last summer that he talks about often.

Last night he asked me….’MOM, can we go to the fair soon?’ And I said…’yes, but we have to wait until summer.’  And per the usual he said to me…’can my brother go?’ And this time I told him no. His face immediately fell. ‘Cooper can’t go with us buddy.’

And I went onto explain how the fair will be too scary for him. ‘Too many sounds and people for Cooper.’ He thought about that for a minute and then looked up at me and said….’is that because he has ‘tism?’ And I said ‘yes, Cooper’s autism makes things harder for him but it also means that you get to do really special things with just your mom and dad.’

And he asked again, ‘can we please bring Cooper? I want my brother to go.’

Again I said, ‘probably not bud. Cooper would really have a hard time and would probably end up getting really sad.’

And this barely three year old looked up at me and said…’I’m getting bigger mom. And someday I will be able to carry Cooper when we go places so you don’t have too.’

And I just stared at him.

A million emotions flooded me.

The first one was love. This baby is so full of love for his brother. He is kind and sweet and smart. At age 3 he understands my struggles at times to care for Cooper. That is pretty amazing.

The second was anger. I had the typical I hate autism flash. Why does my 3 year think carrying his 5 year old brother is even an option? Why does he even know what autism is? I hate this his life is harder because of it. Yes I know I am raising a loving, empathetic, amazing child. That’s a fact. But I still hate that Sawyer’s life is different because of autism. He misses out on things. He spends time at appointments and therapies and sees things I believe a baby shouldn’t have to see. But that’s inevitable.

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The third was sadness. I hate that Sawyer has and shows this undying love for his brother and Cooper doesn’t pay him any attention. I wish Sawyer could have that bond returned to him. I wish he could have that amazing friendship with his brother. Or that Sawyer’s big brother could and would protect him. It would never happen at this point. That’s hard to swallow.

And the fourth was straight up fear. Sawyer has no idea the truth behind that statement…‘someday I will be able to carry my brother so you don’t have too.’ Or the responsibility that might actually be put on him to care for his brother after I am gone. Someday Jamie and I are going to have to actually decide who will take care of the vulnerable person after we are gone. Will it be Sawyer? I have no idea. But lord that is a scary thought right now.

Sawyer continued to stare at me as all of these emotions flooded through me. I told him he will never have to carry his brother alone. We will do it together. And he laughed and off he ran to watch Curious George.

That conversation really shook me up.

It’s just sad I guess. Cooper has autism. I get that. I accept that. We all do. He is a perfectly wonderful, amazing, and joyful little boy. He is the love of so many peoples lives. But I don’t think I could even define or begin to explain what Autism did to us as a family. Or as parents. And now as a brother.

We will never be the same again. Maybe we are better. Stronger even. Who knows. And I feel like it’s fine that it’s hardened me and Jamie. We can handle it. But leave the kids out of it. Right?

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**Pictures taken by Kacie K Photography in New Richmond, Wisconsin. SHE IS AMAZING!!

 

Back to Reality

56a54ad675bd81989614d445015c74cbJamie and I are back from our quick vacation in Washington DC. It was so amazing to feel like a grown up. I think I started to forget what it was like. We ate and drank and slept. And we only had one deep, ‘what does the future hold’, conversation about Cooper. And wow was the break refreshing.

Everyone deserves a break from the worry. If you let it the worry will suffocate you. And as parent’s of kiddos with needs we know all too well what that is like. Don’t get me wrong, I thought about Cooper in every child I saw. I saw thousands of kids and they were all so well behaved. It blew my mind. Right now, as it stands, Cooper could never travel to a museum or ride the Metro. He is too busy. And he might never be able too. I even watched the school aged children closely and said a silent prayer as I watched them stand in lines or eat lunch. It’s the simple things that I want Cooper to experience. I digress. Those worries are too far away for me to think about right now.

Our lives are just different. And everyday I get closer to accepting that.

The boys were so excited to see us when we got home. There is nothing better in the world than to see your kids after being gone. And Sawyer is walking. Yup, trouble has arrived!

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It’s the same old with Cooper. Certain things are getting easier and some things are getting harder. He understands everything we ask of him and that is huge. But, a lot of the time he could care less about what you are asking him to do. It’s really hard to explain. He’s not in his ‘own-world’ by any means. He just doesn’t care to do the project or to follow the directions. He likes to be naughty. For example at OT last week he decided to be wild in the waiting room. And that meant throwing toys, trains, books, you name it. He’s laughing and running around and it’s plain frustrating.

He did amazing at speech yesterday though. He made the ‘M’ and ‘H’ sound like he owned them. And he followed directions and played with his therapist. For 1 hour I felt very hopeful.

And lastly, a little cuteness. And by cuteness I mean ‘holy-mother-of-naughty-you-are-lucky-you-are-so-dang-cute!’

I put Cooper in his room for his afternoon nap. I checked back after 10 minutes or so, (Cooper was suddenly very quiet), and I see Cooper standing there with no diaper on. He kept pointing up, laughing and screeching but I was too busy to pay attention. I grabbed a new diaper and went in his room. I was talking away and telling him that he was very naughty and that he needed to get me the dirty diaper. Again, I wasn’t paying attention. I asked him one more time where his diaper was and again he pointed up. And here is what I saw. Nice arm kid.

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Another Baby

baby bellHubs was feeding Sawyer a bottle the other day and I made a comment about how cute they looked. Hubs said, “well, this is most likely my last baby so I want to soak it up.” STAB TO THE HEART.

In another life I would have had 4 or 5 babies. I love babies. All I ever wanted to be was a mom. I love being pregnant and the excitement of waiting to meet the new love of my life. I love the baby grunts and the smell and nursing and all of it. Simply put, there is nothing in this world better than being a mom.

But it’s not just baby smiles and snuggles. There is the issue of money. Daycare costs. The issue of time. Of working. Of managing a household. Every mom can relate to that feeling of failing at everything. I often say, ‘if I could just get control of one area of my life I would feel better.’ If I could just get my laundry done or get my baby books organized or whatever.

Then, there is the white elephant in the room. Managing Cooper is a full-time job. It emotional and rewarding and the days are long and hard. Could we really manage life with a 3rd baby? And I am pretty lucky to have one of those amazing husbands that helps with babies. We really do it together but it’s still hard.

After hubs said to me that this might be our last baby I choked up a little bit. And for more than one reason.

First, I want one more baby. I want to try for a girl. I want a daughter so badly. But I would love any baby God wanted to give me. Mom to three boys sounds pretty good too! (Exhausting but good.) I want to be pregnant one more time. I want to nurse one more time. (As I type this I am weaning Sawyer and pretty sad about it.)

fc786c7d832a99f76684daf482d18b20But there is also another reason I want another baby. A sad, pathetic reason I don’t even like to say out loud. I need to know that Sawyer will have a “normal” sibling. I need the reassurance that he won’t be alone. I want him to have a sibling to play with. And maybe Cooper will play with him but I just don’t know. It’s still unknown.

And what if Cooper needs care for his whole life. This most likely won’t happen but who knows at this point. I don’t even know what tomorrow brings. I can’t put that pressure on Sawyer alone. It’s just too much to think about. To sad really.

I don’t know what the future will bring but I do know that if we were to try for a 3rd baby it wouldn’t be for a few years. We need some breathing room and to get our bearings.

Have a great Tuesday all!

 

 

 

Raising a Child With Needs and Your Marriage

Swenson (33)Having a baby changes your whole life. Time changes. The days are long. I used to say, “Cooper gets us up at the crack of dawn and doesn’t quit until he collapses at bedtime.”

Before we had Cooper, our marriage was very strong. We wanted a baby so badly and got pregnant easily. When you are pregnant, and even before, you picture what life with this baby is going to be like. My husband went to college on a baseball scholarship and I played sports as well so I pictured a super sporty kid. You never in your life believe that something could go wrong. And you can never know how you or your partner will react.

Before kids, I loved being outside. Hiking, running, camping. I loved reading. I loved getting dressed up and going out. I loved traveling. My husband loves to hunt and fish and do what he wants to do at the exact moment he wants too. Which I think is pretty normal. I had no problem at first giving it all up to be with my baby. Honestly, I still don’t. I LOVE my kids.

Having Cooper changed all that. As it does with every baby, you grow up. Life changes. The new normal is loving your baby. And I have always wanted that and been okay with that.

But having a child with needs adds another level onto it. And we very rarely get a break. Jamie and I have to be extra patient. We have to always be teaching. Always be encouraging Cooper. Always repeating words and working on language. We work on puzzles and jumping and pointing. We are always ‘on.’ And it has been difficult on our marriage. We both work full time and have busy lives. Add speech therapy, occupational therapy, daycare, doctors, etc. And disagreements on diagnoses.

And add in the differences in handling issues. I am a fixer. Jamie is laid back. I want answers. Jamie needs to process. I worry about every single aspect of Cooper’s life. Jamie lives in the now. He always says, ‘why worry about tomorrow? It won’t get you anywhere.’

Somewhere along the way I got angry with Jamie. Maybe it was resentment. I always think he should be doing more. More teaching. More flash cards. My temper got worse and my patience with him left. I had a son with needs I didn’t need a husband  with needs too. What I needed was a partner. I needed him to get opinions and search the internet and find resources. Order books and read blogs. Why was all of that on my shoulders. I wasn’t strong enough to do it all by myself.

I really wish I could say that raising Cooper has made our marriage stronger. And maybe in the long run it will. But I just don’t know right now. I am hopeful though.

We are so tired and worn down. We love each other very much and we are going to get through this. But right now, the days are long and the nights are short. And at the end of the day our perfect son isn’t who we thought he was going to be. And that’s a lot to take.