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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A Letter to My Other Son…The Sibling to A Special Needs Child

My little peanut,

Today is your fourth birthday bud. How can that be? I look at you running and jumping with your friends and it’s hard for me not to cry. You are amazing. I am so proud to be your mom. I need you to know that.

I want to tell you a few things. I know you won’t understand them now. And that’s OK. But someday, when mom is old and grey, I want you to read this letter.

I want you to know I am so unbelievably thankful that you are my son and Cooper’s brother. You need to know that. Together, the two of you have given me more joy than I ever thought was possible.

I have a secret. No one knows this. I cried the day I found out I was pregnant with you. Actual ugly tears bud. I have never been more afraid in my whole entire life.

Your brother was two and I was failing as his mother. I couldn’t fix him. I was chasing doctors and therapies and coming up short. I felt like I was failing as a wife, a friend, an employee and a mother. My world was crashing down around me.

Autism was right around the corner. Severe, nonverbal autism. The scary kind. The kind no one talked about.

I lived every single day with a dreadful feeling in my stomach. I knew the bottom was going to fall out of the perfect life I fantasized about. I could feel it happening. It was only a matter of time until we had a diagnosis.

But I was faking it and making it pal. I kept the perception up. And then I found out you were coming. It was a Saturday morning. I’d been awake all night with Coops. Your dad was at work. And I had a hunch. I peed on a stick and the thing practically screamed YOU ARE PREGNANT.

I was so scared buddy. I hadn’t slept in 2 years. My world revolved completely around your brother. Much as it does now. Not a lot has changed in that department. Hell, I think the first year of your life I nursed you in every waiting room in Duluth.

For the next 9 months I would lay awake at night when I should have been catching precious sleep googling ‘odds of having two children with autism’.

I was so scared Sawyer.

Then it was January and you were here. And, oh my God baby boy, you were perfect. You slept. You ate. You laughed. You were content.

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Photo Credit: Melanie Houle Gunderson

I want to tell you a secret.

You saved me buddy. I want you to know that. Not a lot of kids can say they saved their mom.

By the time you were born my world was 100% autism and my fierce need to help your brother. I was running myself absolutely ragged chasing therapies and help. And while that is what a mother should be doing, it was slowly taking over my entire world. I was missing all the joy of motherhood. I was simply surviving.

You reminded me that I needed to live life with my babies. You brought our family back to reality.

On the days when autism had me down. On the days when my heartbreak over your brother’s disability was more than I could handle. You were there. Laughing and smiling. Learning to crawl, walk, jump and speak. Inserting yourself into Cooper’s world too. You could always do it in a way that I never could.

You gave me all the milestones and memories that a mother should have.

And on the other hand watching you pass your older brother cognitively, socially, emotionally and physically has been crushing. You are my little reminder of what Cooper isn’t. There are days where I miss your brother so much I can’t stand it.

I think of the all times we almost downplayed your development because your brother learned to use a straw or point to his nose. Such simple things. We never meant to do that buddy. We just knew you were fine. You were thriving. Your brother wasn’t.

I want to say I am so sorry. You were born into this.  Having a brother with severe special needs has to be frustrating. There are days when the only interaction you have with Cooper is a kick in the face.

Autism is such a mystery to you. I can see it in your face. There are days where you will look at Cooper and ask him a question and he will squeal in delight. Those are the good moments. And I know they are few and far between.

I want to say I am sorry that this is happening. You are the most social kid that I know. You come to me to meet those needs because your brother ignores you. You demand me to play with you.

Part of me wishes you didn’t know the word ‘Autism.’ And then a part of me is thankful that you know hard times. That you know sadness and disabilities and differences. I feel like it’s almost a gift Cooper has given to us. You know struggles kiddo.

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Photo Credit: Kacie K Photography

I feel like I’ve missed so much of your life.

Last month I forgot the year you were born. We were at the doctor having your well-child visit and the receptionist asked me your birth date. I said January 20.  And she said ‘year?’ I just stared at her. I looked at you. I looked at her. And I burst into tears. I truly didn’t know the year you were born.

Your daddy giggled about my forgetful brain and attributed it to lack of sleep.

I think of the times I shushed your beautiful chatter and nonstop questions because I had been listening to your brother scream for hours.

What kind of mother does that? But I know that you will understand. You will be quiet. Your brother won’t.

The other day you grabbed my face during a social worker visit and looked right into my eyes and said, ‘Can we talk about Sawyer for a little bit mama?’ I will never forget the way you held my face with both of your chubby hands and asked so sweetly Sawyer. And I told you we would after the social worker left. We would talk about Sawyer. Only we didn’t because your brother needed me.

I want you to know I am so sorry for that moment that you will never remember.

I want to thank you sweet boy. Our life is hard. It is even scary sometimes. It’s exhausting. And you get the leftover shreds of a mother after autism is done. And I am sorry.

Some days I think I am creating a monster because I spoil you so terribly. You see your brother doing so many things that you can’t. So, I give into you all the time. I hold you and coddle you. I let you stay up later at night so we can have a few minutes without autism.

I am so sorry that 5 times a day I say to you…’because he’s autistic.’ There are days when I swear I’ve failed you.

Or the times I told you that you had to walk because I had to carry your brother. It started when you were 2. Your brother was 4. You would scream at my feet with those little arms in the air and your brother would kick at you from my arms. We would be in the midst of autism meltdown so fierce that I would have to walk and hope that you would follow.

Those moments are burned in my brain buddy. Oh the guilt.

There are moments when I will look at you and wonder if you will take care of your brother after I am gone. Will you love him like I do? Will you shave his face? Will you dress him? Will you change his diaper if needed? Will he live with you?

How can I ask you that? I want you to go to college. Get married. Have babies. But part of me has this favor to ask of you. I need you to love your brother after I am gone. I need you to protect him and while I don’t know what that looks like yet I just need to say it out loud.

My worry about Cooper’s future is unbelievable.

Someday, mommy and daddy need to talk to you about the future. But not today.

Today you are 4 sweet boy and we are celebrating everything that is you. Today Autism is not the priority.

I am watching you play and thinking about all the things I want to teach you.

I want to teach you kindness, love and patience. I want to teach you that disabilities are not scary. I want you to fight for what is right. I want you to fight for your brother.

But most of all I want you to be happy doing whatever it is you want to do and to have no animosity against your brother. I want you to accept Cooper and love him and truly see all the joy he brings to our lives. I want you to be brothers in every essence of the word honey.

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Photo Credit: Kacie K Photography

I Can’t Fix My Son

I shared a video last night on Facebook and I can’t believe the overwhelming support I’ve received.Thank you to every single person that messaged me or left me a comment. Just reading the words, ‘I understand,’ is more therapy than I can describe. Knowing that people out there understand is amazing. It makes me feel less alone.

So, what was the event that caused my crash?

Well, we had an evaluation for Cooper yesterday at an autism center. I am looking for options that will replace public education. I am pro public education in most cases but I feel in my heart that Cooper needs more than the school district can offer. And in Minnesota the options are limited.

The evaluation went well. It was fine. It is what it is.There were even some positives that came out of it. For the first time in Cooper’s life he did the evaluation with the therapist alone. The observation part. Jamie and I actually sat down for 15 minutes and had a coffee. IT WAS AMAZING. On a tough note he threw chairs and puzzles for the first part of the evaluation. I’m used to it. But seeing it in public is hard.

So, now we wait to see what options and support they can provide to us. That’s the black and white side of it.

The emotional side….the mother side…that part is way different.

Yesterday it hit me like a ton of bricks that I can do every possible thing to fix my son and he will still be autistic. I can’t change the outcome of this. And the heaviness of that feels like I am on a roller coaster of emotions at times. And it causes me to question what I am doing. And how much I should be doing. It’s terrible. I feel out of control.

I am going to come out of this funk and sadness friends. It happens every couple of months for me as an autism mom. It usually springs up after an evaluation or the start of something new like kindergarten. Or a super hard event. I always get through it through . And I will this time too. I will wake up one morning and dust myself off and pull up my MAMA BEAR AUTISM ADVOCATE BIG GIRL PANTS and kick some serious ass. Because that’s what parents do. That’s what I do. That is me.

Anyhow. Thank you for sharing my journey with me!

Diaper Options for a 6 Year Old

Hey all,

One question I am continuously asked is what kind of diapers we use for Cooper. He is a big boy weighing in at 60 lbs. He currently wears a size 7 diaper.

Cooper’s diapers are covered by his Medical Assistance. As far as I understand, and this may vary by state, a child with an autism diagnosis who is covered under medical assistance gets free diapers after the age of four. That’s what I was told. We had to figure this out for ourselves. Meaning a fellow parent told us.

Cooper started on Medical Assistance (as back up to my primary health insurance) at age 3 1/2. We didn’t find out that we could get his diapers paid for until he was almost 5.

The system is broken my friends.

I order his diapers from a Medical Supply company and they are delivered right to my house. This is awesome. And life changing. The company calls me once a month and I place the order.

Note: Diaper wipes are NOT covered under Medical Assistance. This is a huge bummer. We go through hundreds of wipes a day.

The first time I had to order size 7 diaper I cried. It was tough for me and I felt really sad about it.Now he is almost into a size 8. Sigh.

The first brand they sent me was called Prevail. And they fit like I imagine an adult diaper would. They are basically a square. I HATED THEM. They didn’t stay on. They went all the way up Cooper’s back and front to his chest. They were bulky and made a lot of noise when he moved. I sent them back immediately.

The second brand we received are called Cuties. I LOVE THESE. They work great for us and fit like an actual diaper.

Here are a few pics of the cuties as well as the Prevail brand. I also did quick Amazon search and they do sell them.

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The Cuties Brand is on the left.

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An Open Letter to the Friend I Lost Along the Way

I am sitting here thinking about our relationship. And about how much I love you. And how I rarely see you. We joke that it’s because life is so busy. We have jobs and babies.

We say that this month we will finally find the time to get together. And how someday soon we will have more time. One of these days we will actually get together and do something.

I’m not sure if that’s entirely true though…at least not for me. We are different. We are friends. We are practically family. I love you and your babies. But we are different. And we dance around it like it’s not true.

Like the differences aren’t the white elephant in the room.

I want to say I am sorry. I am sorry that I don’t make plans with you. I am sorry that I won’t commit to doing anything. And mostly I am sorry that I always cancel.

This morning I woke up at 3:07 am with Cooper. This is common in my world. Some days are worse than others. There are mornings where he kicks me. Mornings where I have to physically restrain his 60 pound body.

There are moments where I am so close to giving up its scary. And other mornings where I don’t know how I’ll make it through the day.

I could tell you all this but I don’t. It’s not believable. I sound like a broke record. I feel like I am whining.

So, I cancel. Or, even worse, I refuse to commit to plans. I do this because every day in my world is extreme and different.  And I need you to know the weight that I carry is bigger than me. It’s bigger than our friendship. And it’s completely out of my control.

I feel the strain between us too. God I feel it. I miss you. I miss us. But most of all I miss the friend that I used to be.

I know that I am not the woman you remember. I am different. I used to be so much fun. I was up for anything.

I didn’t fit into your world anymore. I would like to think that it evolved slowly over time. But that is not true. It happened all at once.

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Photo Credit: Melanie Houle Gunderson

It happened the day Cooper was born. Before that we were the same. College, wedding preparations, baby preparations. I was you. You were me. We were young. We were blissful. I was completely and utterly naïve to the hurricane force that was going to soon control my life.

Then wham. I was different. I had a label. I was an autism parent. I immediately carried it on my shoulders. The weight was more than I could handle at times.

When our children were younger it was one thing. My baby didn’t sleep. Yours did.  Mine never stopped crying. Mine was chronically ill with ear infections and constipation. I was tired. I couldn’t speak about anything besides how my child was NOT autistic.

I saw how you started to miss me. I saw how I started to slip away. Don’t think I didn’t know it was happening. I was part of every second of it.

But I could pretend then. We could pretend. Our children were infants. And every mother we knew was exhausted. So this was going to be fine.

We would sneak away for a glass of wine and laugh about motherhood. We’d talk about the vacations we would take when they were older.

Then, the differences started to show in my child. He was no longer just a bad sleeper or a difficult baby. This was more serious. The differences between our children hung in the air when I was with you.

We would trade stories of other mothers we knew who went through the same thing…and it turned out fine. They were fine. I was going to be fine. This was going to be fine.

You’d find a blog post or a news article about a late talker and send it my way. We both agreed it wasn’t autism.

Then, suddenly, I had a diagnosis.

My life quickly became doctors, therapies and IEP’s. I couldn’t relate to you anymore. And you most definitely couldn’t relate to me.

It was like I was in a movie. I watched myself turn invisible right before your eyes. I felt out-of-place. I felt irrelevant. But most of all I felt jealous.

My child was different. Yours was not. Your child met milestones. Mine did not. Your child said her first word. Mine did not.  Mine would scream and hit his head in frustration.  Yours had a conversation with me.

You potty trained your child in a month. I frantically searched for size 7 diapers.

And then I completely slipped away into this new world.

I stopped calling. I withdrew.

That is the blatant truth. We can dance around it. You can say that you are OK with Cooper. I hear it all the time from friends and family. I know you love him. We all do.

But my son is different from yours.

And I want to say that I am so sorry.

It’s truly not you. You are a wonderful friend. And I love you. But I slipped away and I don’t know how to come back.

I am sorry we don’t come and visit. The preparations for a visit to someone’s house are epic. Do you have a fence? Do you have WiFi? Pets? Do you care about messes? The list goes on. Snacks? Sippy cups? Milk? In a sense I still have a newborn. A 60 pound newborn that can do some serious damage.

And I believe it when you say that you love Cooper. You don’t mind the screaming and the pacing.

But I do friend. I care. I care about parenting in front of you. I care that I can’t sit and talk to you because of Cooper. I care that I wake up at 3:15 am. I care that I got poop on your floor while changing my 6-year-old.

In the back of my mind I wonder how long you will hang on. When will it be too much?

I want you to know that I wake up every day happy and with the best of intentions. And by the end of the day sometimes I can’t see straight. It takes all my strength to respond to a day old text message from you.

I will go on Facebook and see that you signed your daughter up for gymnastics. Or maybe it’s t-ball this time. I guess whatever activity a 6-year-old does these days.

I will feel the pain in my stomach. I am over here researching special needs strollers for children. I am trying to figure out how I am going to pay for it. And how I am going to be strong enough to bring it out in public for the first time. How do I find one that won’t stand out? Or make us look too different.

What you are doing isn’t wrong friend. It’s amazing. I am so happy for. Your children are beautiful. You are beautiful.

I’m just not there.

I need you to forgive me.

I am letting you off the hook friend. Autism isn’t your world. It is mine.

I want to thank you for standing by me. And I want to ask you to not give up on me. Your children are going to continue to grow and thrive. There are times where I think Cooper and I will be in the same exact spot.

Please remember us. We are trying so hard to fit into your world.

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Photo Credit: Kacie K Photography

Why I Gave Up Hope As An Autism Mom

I just changed my six year old’s diaper. It was messy. There was poop dripping down his leg. It was on his jeans. His socks. The poop got on my hand and the carpet.

And I almost started to cry.

I thought, ‘why me?’

And I let myself go down the rabbit hole of feelings that accompany raising a baby with special needs.

I let myself sink right into that shit.

The self pity. The ‘why me’s’. The ‘this isn’t fairs.’ The ‘I can’t do this for the rest of my life.’

I wondered what I did to deserve this.

And for one brief tiny second I let myself picture what this will be like when he is 12.  I pictured Cooper as a teenager. Then a man. Only for a second though.

I let the feelings last as long as it took to wrap the diaper in a Target bag and throw it on the front porch.

As I shut the door I caught a glimpse of the neighbor kids building a fort. Two boys. Both Cooper’s age. They waved and shouted hello.

And I breathed a sigh of exhaustion as Cooper non-verbally screamed at me to put another diaper on him.

And then, just like that, the feelings were gone. All of the sadness and depression and jealousy just left.

How you ask?

Well. Truth?

I gave up hoping for life to be different a long time ago. I gave up hoping that his autism would go away.

I just, gave up.

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God that sounds terrible. But, well, it’s the honest truth.

I had to give up. I couldn’t take the pressure of hoping.

The pressure of hoping he would talk. Of hoping he would be potty trained. Of hoping he would turn out normal. Of hoping that he would grow up and get married and have babies.

I had turned into this person that was always waiting for my kid to get better. I was waiting for words. For a conversation. For it to get easier. I was waiting for something that wasn’t going to happen.

And I was slowly going insane.

Hope. It’s a funny thing.

Never give up they say. Keep trying. Stay positive.

But, what if the hope is killing you.

I found out that Cooper’s autism was severe when he started Kindergarten.

Age 5 was a tough year for my ‘hope.’ My baby was so different. He was in special education. School wasn’t fun for us. It was IEP’s and stressful conversations. It was different than of a typical child.

I would spend days hoping that Cooper could go on a field trip. Or participate in a school play. I would see his classmates. I would see what it ‘should have been like.’

And then I stopped hoping. Just like that.

I realized to keep my sanity I had to give up hoping for things like play dates and friends and field trips. I had to let go of the hopes for school dances and sleepovers. And sports.

Giving up hope damn near killed me people. I won’t lie to you. I felt like a terrible mother.

But I couldn’t take the alternative any longer.

Do you know what it does to a mom when she is continuously asked by friends and family if her son is going to talk? Or use the toilet? Or learn to read? Or move away after High School?

Daily people were asking me what the future looked like. And they’d always say something like, ‘well, HOPEFULLY, he improves.’ ‘Hopefully he starts talking.’ ‘Hopefully he starts pooping in the toilet.’

I would stare at these people. And my I would be dying on the inside. I would always smile and say, ‘hopefully someday!’

And then one day I just stopped. I started saying ‘probably not.’ And now, I say, ‘no.’ Cooper will probably never talk. And he may never use the toilet.

And the relief I felt from those sentences. It was so freeing.

I realized I was keeping this false hope up to make everyone else feel better. I wanted to give them an answer that made them happy and comfortable. And it was at the price of my heart.

So, I stopped.

I gave up the hopes of my perfect, normal child.

And as soon as I did that I was able to accept life for what it was.

Giving up hope saved  me.

Cooper and I have beautiful moments. We laugh. We hug. I tickle Cooper. He blows raspberries on my back.  We go swimming. I lay with him before he falls asleep.I laugh at his trains. I sing him song after song. I jump with him on our trampoline.

And slowly, those things started to make me feel OK. Not quite so sad.

But I had to give up on the hope that we would have someday have a conversation. I had too. I just had too friends.

The hopeful waiting is gone now. I don’t spend nights thinking ‘what if’ anymore.

And that’s OK.

Now, if it happens, I can experience the joy in a brand new way.

Until then, I am loving the kid that I have. No more hoping for a different one.

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Photo Cred: Kacie K Photography

A Day In Cooper’s Life: Autism in Pictures

I am very vocal about the stress that goes hand and hand with being an autism parent. It’s a topic that isn’t always talked about. I want to change that.

Autism is hard. Unbelievably hard. I have post-traumatic stress from it.

For one it’s often extremely loud. For me it’s Cooper’s screeches mixed in with the constant sounds coming from his devices. And my little guy loves it LOUD. Really LOUD. I’ve tried covering the speakers with tape. He rips it off. I’ve tried headphones. He refuses to wear them.

So, I say, ‘turn that down buddy’ 547 times a day. It’s a lot. I remember saying at Cooper’s 3 year old check-up that technology is ruling my life. If I had only known the future. 

And for all you parent’s of typical kiddos…trust me when I say I am not happy about his technology obsession. It’s his life though.

Autism is often repetitive. Their actions. Their sounds. People with autism love routine.

Autism can be very messy. It can be destructive. It can even be dangerous.

Autism makes me feel so out of control that I want to scream.

His need for everything to be exactly the same in a changing, crazy world is almost impossible.

And I am the mom. The caregiver. I am here to keep him safe. Loved. And at times I don’t know how to do it all. And I often wonder at what cost.

Many times throughout the day I feel like I am walking on eggshells. I will do anything to avoid a meltdown.

Why?

Because the meltdowns are extreme. They are loud and can even be scary. Cooper will beat his head on a wall. Or even the floor. This is called self-injurious behavior and is common for nonverbal people. They can’t orally communicate what they are feeling on the inside so they hurt themselves on the outside.

It’s very, very hard to see. It makes me feel sick when I see him hurting himself. So, as you can imagine, I do anything to avoid it.

But what if I don’t always know the triggers? Or if the triggers change daily. It’s like I am playing a game with the highest stakes and I don’t know the rules. And my partner isn’t playing fair.

It’s trying to make every day the same as the day before. IF I do this the day will be fine. IF there are no hiccups. No late buses. IF we aren’t out of his favorite foods. Or favorite drinks. Or IF the WiFi isn’t out.

This is why I have 4 Kindles charging at all times. This is why technology rules our lives.

And this is why Cooper gets first dibs on what is playing on every television in the house. And why I give into his demands that every food MUST be in a bowl. And if we use a plate with sections then every section MUST have food in it.

This is why I always have milk and Capri Suns. And his snacks.

This all sounds crazy. Right? Like legit crazy. I know it does. It sounds unhealthy for me. It sounds like I am controlled by Autism.

Ding, Ding, Ding.

Autism controls every aspect of my life.

It controlled my marriage. It dictates how I parent. And my day. And my attitude. It controls my sleep.  It controls my job. And my plans. And every single thing I do in a day.

This is so much more then parenting. This is being an autism parent.

It makes me feel completely out of control.

Then add in raising a typical 3 year old along side this chaos.

Cooper’s life is on repeat every single day. We need it to be that way. He needs it to be that way.

I wanted to share with ya’ll what Cooper’s home days ‘look’ like. He has a routine. A routine that is so long and drawn out that one might not even notice that it is happening. I notice.

I am pretty sure my sweet boy has worn a path in my carpet.

He goes from his destroyed room where The Good Dinosaur is playing on his tv, to my room where he tears apart my bed, to his brother’s room where he tears apart the bed, to the couch, to the kitchen table with all of his ‘things’, to the basement stairs where he has a snack, to the toy room. And repeat. He has a Kindle with him at all times.

This will go on for a whole entire day. From 4:30 am to 8:30 at night. The only changes would be meal time, bath time or if we go outside or leave the house.

Here is Cooper’s life in pictures.

Imagine this on constant repeat. We try not to get in his way. But at times doors will have locks placed on them. Mostly for my sanity. I can’t clean every single room. I can’t make every single bed.

But, when I remove one of his stops I will notice that he gets extremely anxious.

This is Cooper’s room. He first tears his bed apart. He will spend 15 or so minutes doing this.

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Then he goes to my room and tears my bed apart. All the bedding, and any other ‘free’ to grab object gets placed into a pile in the corner of my room.

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Onto his brother’s room where he will actually dismantle the bed.

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Then to the living room where he will demand a show be put on the tv.  He sits on the couch. It doesn’t matter who is sitting there. He is Sheldon Cooper. This is his spot.

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Next stop is the kitchen table. He brings all of his items with him. Blankets, DVD’s, pictures. He always has a drink and snack and will go absolutely bonkers if we deny him food.  He arranges every item with care and precision. 

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He then stops by our technology station. 4 kindles. Always charging. He will typically switch out his Kindle for a different one on each pass through.

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In the basement he likes to destroy the toy room. I can always hear it happening. And I let it happen. This is an activity for him. He is playing. My wall is wrecked though. Sigh.

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Then up the stairs he comes and goes back to his room. This is our life. Every. Single. Day.