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Challenge: Finding Your Voice as a Parent

To my partner: I'm sorry autism changed me

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Jamie, I’ve been thinking about when we first got married. How young we were. We were so unbelievably happy. We had a little house. We had jobs we liked. We had so many friends. We had two puppies. We referred to each other as mom and dad when referencing the dogs. We were that couple.

But most importantly, we knew exactly who we were. We had identities and hobbies. We weren’t defined by anything that we didn’t want to be defined by.

Some days, I swear you would just stare at me. You thought that I hung the moon. I loved that.

I had an almost obsession with starting a family immediately after we were married. I dreamed of being a mom. It was my purpose. You knew that. You were on board.

After one emotional miscarriage, we got our little Cooper.

I remember looking at him in my arms and glancing at you and thinking…this is going to be so amazing. We are going to have so much fun together.

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My Perfect Little Family

And we weren’t going to change. I thought we’d keep living our lives. Jobs, trips, restaurants, camping. We’d just do it with Cooper.

But, all parents change. I think that is inevitable. The stress of babies and marriage is a lot. Add in money struggles, moving, job struggles and chaos and we all begin to morph. It’s hard to stay that fun loving carefree person you were before kids.

You get more responsible. You get tired. Your priorities change. I like to believe we get better.

I knew right away Cooper was different. He was a challenge from day one. You didn’t. You weren’t around babies much before our own so this was all you knew.

Right away that caused a bit of a rift between us. I’d say things like…’this isn’t okay Jamie. Something is wrong.’ Those sentences annoyed you. I truly believe you thought I was a traitor to our son. Little did you know it killed me to say those sentences out loud. It took all my strength.

By age three, we still hadn’t slept through the night. Not only did we not sleep, home life was stressful. Cooper’s rigidity and anxiousness were building daily. He refused to eat. Poop. Play. Leave the house. Sit.

And to make it worse, people around us were starting to notice too. Daycare providers. Friends. Family. Talk about pressure. We’d defend our son to other people and then unload on each other. Some days we both agreed something was wrong. Some days, it was only one of us. It wasn’t easy.

Hearing It Out Loud

And then, we had an autism diagnosis.

I thought getting that was going to be the hardest part Jamie. I really did.

Hearing the words out loud by a professional would make it real. But honestly, looking back over the past seven years, there were so many harder parts.

The years without sleep. The realizing my child was different next to my friend’s children. Of course the diagnosis. Finding out he was severe and watching him slip behind his autistic peers. Finding out some kids don’t ever talk. Saying goodbye to public education. The day his younger brother passed him by. And then accepting forever. That one was the hardest.

Hell, I’m still not over that one.

Some days I’m amazed at how far we’ve come. We are still standing. We are still smiling. You don’t go through something like having a child with disability and not change.

I need you to know that autism changed me completely. I am different now. I am no longer the woman I used to be. And I want to say that I am sorry.

I am no longer the woman you married. The fun one. The woman who was up for anything. But you know that. Some days, I feel like you look at me like a stranger. Which is funny because I’ll look in the mirror and barely recognize myself.

And it wasn’t like I changed overnight. It took me five years to figure out who I was going to be Jamie. And I think it was the same for you.

We fought having autism consume us. We fought having it control us. We fought being ‘just’ autism parents.

For years we searched for hobbies and a life outside of our home. We tried. But we’d get so much animosity when the other one would leave because the home life was so hard.

Maintaining Normal

We tried to maintain some sense of normal. We eventually started doing everything separate. You’d take Sawyer and go watch the fire works or go to a BBQ at friends. I would stay home with Cooper. Or visa versa.

That did some real damage. To both of us. Before I knew how serious it was I’d call us a family divided.

I wish I could have video of the hardest times in our home. Some people wouldn’t believe it. Years and years of sleep deprivation, screaming, and whining can do that to a person.

We turned on each other Jamie. We had too. Because how do you look at your beautiful child and be mad at them. You don’t.

You were my punching bag. And I was yours.

You’ve called me a martyr. A crazy person. And probably much worse. I called you lazy. Void of emotion. Withdrawn. They were all low blows. They were all somewhat true.

Over the years I’ve tried everything to help Cooper. At first to make autism go away. And then to make autism bearable. And then to make him sleep. Healthy. Use the toilet. Sit. Be content.

I chased so much. I tried so hard. It was all expensive. It was all time consuming. Each new tactic or therapy felt monumental. I’d get so excited. I’d have so much energy. And you would reluctantly agree. I know you knew it was destroying me. But you did it. You did it all.

Thank you for that.

I know I Mostly Failed

You let me go a little crazy. And you waited for me to come back. For that, I can never truly thank you.

You never ran Jamie. I know that we aren’t supposed to praise moms and dads for sticking around when times get tough. I know that. But the people that say that have no idea how hard Cooper’s screams are. Or his rigidity. The behaviors. They will never know.

Some days Jamie, I’m amazed we both stayed.

And at the center of all of it, are these boys. These absolutely amazing boys. We made them together.

Thank you.

You are the one I told my deepest, darkest secrets too. I’ve told you that autism has wrecked our lives. And you’ve told me that we can’t live like this for the rest of our lives.

We’ve laughed together. We’ve cried together. Sometimes in the craziest of places. I’ll never forget the Las Vegas hotel room. It was the first time it truly hit you that your son was never going to lead a normal life. You cried about the future. His and yours. And ultimately ours.

It was the moment I’d been waiting for. And it broke me a little bit. All I wanted was for you to get fully on the autism ride with me. And then when you did, forever and reality set in.

Man, were we broken at times. I’ve seen your lows. You’ve seen mine.

You are the one person that knows I will never truly get over having a son who may never speak. I call you on a weekly basis and tell you, ‘this isn’t right.’ Sometimes I’m crying. Sometimes I’m angry. And you always say the same thing. One day at a time Kate. One day at a time.

You know my heart might never fully heal. Thank you for not forcing me through it. Thank you for letting me feel it.

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We Made It Through

We’ve been through hell. We made it Jamie. You and I. We made it through. Sometimes I picture us walking through fire. Broke. Tired. Worn down.

And each of us has a child on our shoulders. That’s how it always is.

When I can’t carry one. You step in. And some days. You’ve even carried me. And with the weight of my emotions that must have been suffocating.

Thank you for sitting with me every night in our living room. We both know we can’t leave and do things. We give each other breaks.

We laugh together. We see the absolute beauty in our son and autism. We laugh at his quirks. We acknowledge that our life is weird and that most people wouldn’t believe it.

Simply put Jamie, thank you. Thank you for being here. Thank you for not leaving. Thank you for not running. Thank you for not giving up on Cooper. Or on me. Thank you for not giving up on our life.

There is no one else on this earth that I’d rather lose my sanity with on a daily basis.

You are my partner. My therapist. My rock. My best friend. And you love this me. The new one. The one I’m still becoming.

We will be with Cooper forever. And for that, I can’t thank you enough.

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