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

Autistic Kids Grow Up To Be Autistic Adults. And It Can Be Wonderful.

Before my son was diagnosed with ASD I would frantically search out stories, blogs and articles of hope. Stories where it turned out NOT to be autism. Stories where instead of autism the child was actually deaf. Or allergic to gluten. Or whatever. These stories had happy outcomes.

I did this because the stories of autism-to-life scared me to no end. I wasn’t ready yet.

Then he was diagnosed and even more ferociously I searched for stories were the child was cured. The child had autism and the parents started a therapy and boom. The child was better. I’d look for ways to fix him. That’s the truth. I am human.

Then, as I got closer to this bitch of a thing called acceptance I changed. I stopped looking for stories about autistic kids. I stopped because the only stories being shared were about kids that were extraordinarily smart, like Rain Man, or stories where the kids had unbelievable outcomes. Nonverbal at age 5. Graduated college at age 22. Running a business at age 35.

Those stories are great. But as a mom to a nonverbal 6 year old I had to stop reading them. They didn’t seem accurate. They seemed like 1 in a million. And this wasn’t going to be our outcome.

I’d read them and I would feel like I had to grieve all over again.

At this point in Cooper’s life I am hoping for…’said his first word.’ ‘Used the toilet.’ ‘Tied his own shoe.’ ‘Made a friend.’

Then I’d find stories that were the complete opposite.

Stories that scared me to death. Like truly made me cry and kept me up at night type of stories. Stories of parents having to institutionalize their autistic kids because the care got to be more then they could handle. Stories of autistic teens hitting their parents. Hurting themselves. Stories of bullying. Of abuse. Of wandering. Of death.

I wasn’t ready for that yet either.

I just wanted to know what the future ‘could’ be. What ‘could’ I expect.

I was in an interesting spot as a mom. My son was just a typical kiddo with autism. We weren’t extraordinary. We weren’t at the extremes. And because of this I felt super alone. We no longer identified with the autistic kids that spoke. And yet my kiddo was extremely social. I called Cooper the lost child. I still do. We are on our own island.

So, I created this Facebook page. And stories of positive, real outcomes have been pouring in. Stories of autism at age 15 and 30 and 50.

Autistic kids grow up to be autistic adults.

And parents of autistic kids grow older as well.

And as a mom, that thought scares me. So many unknowns. Language, self care, using the toilet. The list goes on.

Earlier this week a wonderful woman sent me the story of her 30 year old son Dan. Dan the Man has autism. And he is living a beautiful life. Here are her words. This story is real to me. Dan is living life. A beautiful life. A life that I would LOVE for my son to have.


Dan-the-Man’s Story:

I am the mom of a soon to be thirty year old son so I guess I would be classified as a pioneer. He was diagnosed before the computer age and when long distance phone calls were charged by the minute. I remember having the same feelings you are experiencing and just wanted to sink myself in the depths of depression. I do remember my turning point was after I had read “Thinking In Pictures” by Temple Grandin. I decided then and there that I would learn everything I could about Autism and we would do everything available to help our son. Professional evaluations took me down every single time because they gave me no hope. I kept looking for the small things in my son to show me that he was in there and I finally got it when he was almost two years old. I was talking on the phone and mentioned that Cheerios was the only food he would eat, he got up from where he was playing and went to the pantry to get the Cheerios. I realized at that moment that he was receiving signals to his brain.

I then started researching everything I could find on Autism, calling directory assistance to get phone numbers of doctors and research places that had been referenced in the ten books I had found about Autism at the library. I found Dr. Rimland and Dr. Lovaas who seemed to know more about Autism than anyone I had ever met. It took almost three years for the wheels to completely start turning because I was afraid to take the big step into committing to a program. I had the local professionals tell me that I was wasting my time and money because there are no cures for Autism. Then I had these studies in my hand from California of children being able to mainstream into regular education through strict behavioral modification programs. I found another clinic that was having success with the biomedical treatment including testing for food allergies, heavy metal poisoning, amino acid deficiencies, vitamin and mineral deficiencies and overages, they were addressing nutritional part in the brain/gut connection. Our neurologist stopped all vaccinations as soon as we had our diagnosis. I was attending conferences to learn everything I could from all of the doctors who were the experts in the field of Autism. I would usually leave with my brain so full of information that I could barely process it all.

Long story short at age five we started a home and school based ABA program with two college students heading it up, we went to a Walsh Clinic and had all the biomedical testing done, had a spect scan to map his brain, did Auditory Integration Training and treated for overgrowth of Candida Yeast…. somewhere in the midst of all of this we started seeing changes, small at first and more as time went by. Language was the last part to emerge, he had a few words but, they usually had to be prompted.

His conversational language did not come until his late teens and about that time his social skills started to develop. He is now a very well behaved, fun, friendly and outgoing young man with Autism. He is also a cartoon information and video game genius who loves to research new information.

Daniel will celebrate his 30th birthday March 14. I can’t believe we survived those early years of no sleep and constant fits of head banging and screaming. I had to learn to think out of the box because we could not afford thousands of dollars to pay professionals. We made thousands of flash cards with pictures cut out of magazines; we used common household items as teaching tools and invested in a trampoline, which ended up being his place of learning.

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Dan the Man

Kate: Can you tell us about Dan at age 30?

He plays baseball with a Miracle League team. He is home with us, manages his money and helps around the house. He worked for a year and went to a small college for one semester. He had the only A in his freshman English class and two B’s in his other classes. He could not attend college because he could not pass a section of the high school exit exam. He passed the the English and math parts with flying colors. Alabama law said he could not attend college until he passed it. He worked for a year at Belk and then we moved to another state. He loves to bowl, play baseball, swim and travel. He never meets a stranger and loves to learn new languages. He researches cartoons and movie characters. He can name every cartoon, who dies the voice, tell you if they are deceased or living and what year the cartoon made its debut. Winnie the Pooh was our breakthrough character and Pooh was his first word.

Kate: What were the younger years like?

He attended public schools with a paraprofessional from K-12. He mainstreamed in kindergarten for art , music, lunch and PE. He fully mainstreamed in second grade with adjustments to classwork as needed. I met with the new teachers every summer to help them understand Dan and his needs. The first weeks of school I always met his classmates and explained very openly everything about Autism. They could ask any questions, this took care of any bullying or making fun of his odd behaviors. I explained all of his odd obsessions and unusual ways off learning. The kids were awesome once they knew what to expect.

Kate: When did Dan start to speak?

He was around two when he said his first word. I was singing the Winnie the Pooh song to him and our older son interrupted me so I left it hanging at Winnie the….? Dan raised his head up from my shoulder and said “Pooh” We stayed up late getting him to say it over and over. We started using that method to prompt a word from him.

His first complete sentence without a prompt after treatment for Candida Yeast was “My Brain is clear.” He was nine years old. We fought systemic Candida for many years, that stuff can do a number on the brain when it gets systemic.

Kate: What is you advice to parents?

So my words of wisdom to you would be to never give up. Stay the course and do not leave any stone unturned. I am thankful that I did not listen too many of the so called professionals who told me that he would never make progress because there are no cures for Autism. All cases are different and I guess they are correct in some ways because we did not cure Autism but we cured so many of the issues that were contributing to his out of control behavior. We took care of food allergies and sensitivities, gut issues, hearing sensitivities, sleep issues, out of control behavioral issues, language and learning delays and seizures which helped him. It was hard and the only regret I have is that we did not start when he was first diagnosed. It took years to correct some of the problems so do not give up after a few months if you do not see results. I gave up on the diet after several months but revisited it after additional testing, so glad I did because we saw huge changes after going back to eliminating artificial colors, dairy and preservatives.

I teared up when I read your post today because I have walked in your shoes. Praying for strength for you and all the other parents walking this path now. God bless.

Want to share your story? Message me on Facebook at FindingCoopersVoice. I’d love to hear from you.

To The Parent of a Newly Diagnosed Child:

Hiya there friend,

Your child has just been diagnosed with Autism. I heard about you from a friend of a friend. Or maybe you found me on Instagram. Or you emailed me at 1 am as you were frantically googling autism in the middle of the night.

I see you. I understand what you are feeling. I was you. I am you. You are going to look to me for hope. You are going to search through hundreds of blogs until you find the one that sounds like your child. Maybe that’s Cooper. And maybe it’s not.

I know you are in shock. Even if you knew deep down that something was different about your child you are still in shock. Hell, Cooper was and is completely nonverbal and there are days where I still think he will snap out of it.

When I walked out of Cooper’s diagnosis appointment I felt every single emotion possible. We waited for 7 months for that appointment. The day came. The appointment happened. We got the diagnosis. We left. I cried. Everything was immediately different yet exactly the same. I was not the same woman that walked through the front door of Fraser.

I was an Autism parent. A special needs parent. I had a label. I was immediately different from other parents. I felt like it was tattooed on my forehead. I immediately questioned everything I did during my pregnancy. I hated my body for failing this child.

I felt every single emotion possible. As I am sure you do too. But they are flying at you so fast you can’t actually make out one from another. It’s a flood.

Relief. Sadness. Confusion. Isolation. Fear. Embarrassment. Anger. Desperation. Grief.

I wanted to take my beautiful baby and run away to a cabin in the woods. I think I actually tried to figure out a way where we could move to a remote part of the state. I wanted to hide. If I hid him this would be fine.

I could outrun Autism. I knew I could. No one had to know.

This is called fight or flight.And it’s the grossest feeling ever. It’s not logical.

I get it friend. You are an autism parent now too. A special needs parent. You are in a group. A group that you don’t want to be part of. And you feel more alone than ever.

I know how you feel. All these emotions are flying at you and you don’t know how to manage any of it. And to make it worse you still have this super challenging child. Then add in everything you’ve ever heard about autism from Google and your mother’s sisters friends daughter. There are buzz words like Medical Assistance, Social Workers, Case Management, Financial Aide Workers, and IEP. The list goes on.

The advice is pouring in. Random friends of friends are emailing you. Your Aunt is tagging you in an autism post on Facebook. GO GLUTEN FREE. CUT OUT DAIRY. VACCINATIONS, VACCINATIONS, VACCINATIONS, PROBIOTICS, ETC., ETC.

But the oddest feeling of all is how the world keeps going on around you. You are different. But yet your child is not. They are the same.

You went to the appointment. You got the diagnosis. You left the appointment. You told Grandma and Grandpa. You tried to answer questions. You cried. You hugged your spouse. You talked about the unknown future. You drove home. You fed your child dinner. You gave your kiddo a bath. You put him or her to bed.You hopped on Amazon and ordered 5 books on autism. You joined a special needs parenting group on Facebook. You googled ‘Autism and Hope’. You got into bed. You cried some more. You thought about the day.

You spend hours wondering if the psychologist was wrong. You immediately Google, ‘Autism Misdiagnosis’ and find a wonderful blog post about a child cured from Autism. And you think, ‘this is going to be fine. This will be fine.’

Then your child will completely and utterly throw you for a loop. Or maybe you will see them next to a peer and the blatant differences will scream at you.

This is real. This is happening. And you can’t outrun it.

You will look at your baby and see the exact same child you did pre-diagnosis. Nothing has changed.

All of a sudden you hate the term Autism. You think if you hear it again you might scream.

Can you say it out loud yet? Can you say, ‘my child is autistic.’

It took me a year to be able to say my son has autism to a group of people. Even to this day it still sounds odd when it comes out of my mouth.

This will sound crazy to you but a day will come when you will tell someone that your child has autism and it will be a good thing. That sounds ludicrous right now. Just believe me. The day will come and you will say it and you will see understanding in a strangers eyes. And you will be thankful that you can explain to people why your child is hitting them self in the head. Or rolling on the ground screaming.

In a super weird completely messed up way that word is now your ally. But you aren’t there yet. So don’t think about that please.

If you are anything like me your first thoughts post diagnosis are ‘what now? You need a plan. A focus.

The night after his diagnosis I needed to research. I needed to stay busy. I needed to fix my son.

I want to tell you that I did it all wrong. I put way too much pressure on myself and my marriage and most of all Cooper.Well, maybe not all wrong. But I was so panicked. I didn’t have the best support system and I isolated myself. Cooper’s dad would say I became a martyr.

So, here is my advice to you as a newly diagnosed parent:

  1. Grieve. Feel every single feeling.
    Be sad. Don’t force yourself to be happy. Don’t lie to yourself either.  You pictured your child in one way and now you know that may never happen. Do not let anyone tell you that you shouldn’t be sad. Or that it could be worse. Do not listen to any stories about people that have it worse. Do not feel guilty for being sad. If I had a quarter for every time I felt sad and heard a story about a mother that lost her baby or childhood cancer I would be a zillionaire. People do this because they don’t know what to say when talking to a grieving person. Feel every feeling friend. Just sit in it for a little bit.
  2. Take time to process.
    Nothing is going to change right away. I thought that our lives would change immediately once we knew if our son was autistic. I was wrong. It took months for us to see any effects of the diagnosis.  There was no medication. No magic pill. Honestly, there was no hope given. There was a label. A diagnosis. A heavy title. And I felt every ounce of its weight. By the time we hit the car I was already on Google trying to find out how to fix this. As a result I did too much too soon and it left me feeling extra anxious. I was making phone calls and raising expectations. I wanted to do as much as possible. How does that old saying go…I was throwing stuff at the wall to see what would stick. Don’t do that. Just process.
  3. Wait to tell people until you are truly ready.
    I told way too many people about Cooper’s autism appointment. I immediately regretted that because I didn’t know what to tell them after. I was scared. And was too sad. I also had no answers. I didn’t know how to answer people’s questions. Still to this day people ask me if Cooper is going to talk. Or they ask what his future looks like. HELL IF I KNOW. I wasn’t prepared for people’s questions and they made me feel so much worse. I was too sad to help them understand Autism.
  4. Don’t expect anything to change right away.
    I really believed in my heart that our lives would begin to change the second we got the diagnosis. If the universe had any idea what it did to me to physically go the appointment they would’ve saved me right away. But life doesn’t work like that. Nothing changed. We walked in there with Cooper. We walked out with Cooper. We told close friends and family the news. That was it. We knew nothing more, nothing less.
  5. Find other Autism parents.
    Finding other parents changed my life. Blogs helped. Facebook groups helped. I joined an Autism support group. Reach out.
  6. Get ready for a fight.
    I know this sounds funny. But it’s true. You are now the sole care advocate for a vulnerable child that most likely can’t communicate. You are going to fight battles that you didn’t even know were out there. You can do this.

Grief is not linear my friends. You are going to have highs and lows. Cooper will be 6 on Tuesday. The severe parts of his Autism are getting more evident. His sheer size alone is a lot. I still grieve. Just when I think we are settling into a routine or have a win a new behavior will develop. Kicking. Pushing. Putting small objects in his mouth. Tearing apart beds. Knocking over lamps. Climbing on cupboards. The list goes on. We add in therapies. We change strategies. I have one meltdown to every five of Coopers.

And you know what, that’s OK.

I want to tell you that you have the strength to do this. You will become stronger than you ever thought possible. Your skin will get so unbelievably thick and you will become the strongest advocate for a vulnerable child. That’s pretty amazing if you ask me.

You don’t have to fight Autism. Or carry the torch against it. But you do have to fight for the best services possible for this little person that is completely and solely dependent on you. And good god friend you will feel isolated and alone because of this child.

I know it’s not the life you planned for. I won’t blow smoke up your butt and say that this one is better than the one you pictured. I won’t lie to you ever.

But what I do know is that you can do this. You are not alone.

 

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A Letter to the Family and Friends of An Autism Parent

Dear friends and family,

13606606_1381994731810983_7112512195913157613_nI 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. Life is crazy. And how some day it will be better. 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 family. But we are different. And we dance around it like it’s not true.

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 cancel.

I feel it too. God I feel it. I feel the strain between us. And I miss you.

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 know that many of you questioned if I had Post-Postpartum after my son was born. I heard the whispers.

Just to be clear….I didn’t have it.

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

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.

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.  He never stopped crying. He 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 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 and send it my way. We agreed it wasn’t autism.

Then the differences got more noticeable.

My life was suddenly doctors and therapies. 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.

My child was different. Yours was not. Your child met milestones. Mine didn’t. Your daughter said her first word. Mine didn’t.  Mine screams and hits. Yours does not.

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 than 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 someones house are epic. Do you have a fence? Do you have WiFi? Do you have other children? 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 care.

But I do. 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 4:15 am. I care that I got poop on your floor while changing my 6 year old.

The truth is….I care friend. We are different now.

You don’t have a label. You are not in my club. You are different.This is why I turn to other ASD parents. They get it. They are my people.

And now my baby is almost 6. We still don’t visit. You still wonder why.  And my friendships and relationsips still suffer. Some of you held on and for that I am so unbelievably thankful. You still text. And call. And some even visit. You force me to do things. To get out of the house. To have a life.

Thank you. If I haven’t said it to your face I want to say it now. Thank you for being my friend. Thank you for showing up.

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

I know it kills you when I always say no. And even worse when I cancel last minute. I want you to know that I am always tired. Sometimes I can’t even put into words that level of my exhaustion. It’s more than physical. It’s pure mental exhaustion.

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 the strength I have to shower and go to bed. That was actually a joke. I rarely shower. It takes all the strength I have to just go to bed. To shut my brain off. 

I will go on Facebook and I see that you signing your daughter up for gymnastics.Or maybe it’s t-ball this time. I guess whatever activity a 5 year old does these days. I will see their smiling faces.

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 know I don’t always answer your texts right away. I rarely check voicemail’s. And I often don’t call back.

I need you to know why.

It’s not you. It’s me. What a cliché right?

I know you don’t know what to say about Cooper. You don’t know what to ask. Or how to help. I feel it too. And that’s OK. There is no right or wrong.

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

But you need to know there are other reasons.

There are weekend days when Cooper will whine all day long. It will start at 4 am and go until 9 pm. There is no break. The sounds are so loud. They are nonverbal. They are high pitched. It is more like screaming. It is anxious. It is loud. By the end of the day I am an open nerve.

If you truly know me you know that I always have music on. It’s always playing on my phone. It’s constant. I do it for two reasons.

I can’t take the silence. I can’t take the lack of conversation with my almost 6 year old.  And I can’t take the sounds that are constantly coming out of his mouth.

When the day is over and Cooper is in bed I will stare at him. I will sit by him and wonder how we made it though another day. A day exactly like the one before. And it will be the exact same tomorrow. I will feel more exhausted than I ever thought possible.

I will go in my living room and sit in my chair in silence. I will think about how he is living completely inside his own head. Isolated.

I am isolated too.

His disability has isolated us both.

I sit and enjoy the silence.

I do this because I can’t take one more sound. This is when I should turn to friends. But I can’t. I can’t go out. Because I know it will start all over the next day. And the next.

This is isolation of epic proportions.

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. And I love you.

A Thankless Job

14088725_1417495344927588_794622903_nYesterday we had another weekly visit from Cooper’s crisis social worker. It was great as usual. We laughed and told stories and talked about ways to help Cooper. More specifically ways to make life easier. I mentioned how the week before the electricity was out at the house and I lasted 15 minutes before I threw him the truck to watch a movie. That kid cannot survive without technology. In a 15 minute period he melted completely down over no WI-FI, useless remotes, VCR’s, DVD players, TV’s, kindles, etc. It wasn’t a pretty picture.

So, as we were driving him around, I was quickly reminded that Cooper won’t eat out of a drive thru. Not only does he only eat a few foods, he can’t always manage to feed himself finder foods. Like biting a chicken nugget can be challenging for him. He needs it cut up. That’s the apraxia side. Biting with the front of your mouth can be tough. Also, he only drinks milk and apple juice…out of his cup…or a Capri Sun…once in a while.

So. New goal. Drinking juice out of a cup with a straw. Or a to-go cup. Or anything different than his preferred sippy cup. I am so sick of those damn sippy cups. Half of my paycheck goes to buying new ones. He chews right through them. It’s a sensory thing. The crisis worker said bribe the hell out of him to get hm to touch the straw to his lips. Start once a day. Don’t force it. Start small.

As our conversation evolved we moved onto talking about the crisis workers job and how he is a realist. His job can be hard. He sees things he can’t always talk about. He isn’t about providing hope….he’s here to provide support. And make life easier. Lord I love this guy.

He told us a story about an autistic teen who watched his dad get murdered. And how the teen boy could not process it. He couldn’t get the words out to talk about it. Can you imagine? I told this guy that I often wonder if Cooper would notice if I died. I think about it a lot. I know that sounds weird but it’s a really valid question. And a sad part of nonverbal autism.

Cooper has very basic needs. He needs food, milk in his cup, someone to wipe his butt, change his diaper, press play on the remote, enter in the 4 digit code on the IPad, drive him to and from school….that’s about it. Anyone can do these things. These aren’t necessarily mom things. Or dad things.

Yes, Cooper wants love when he’s sad. Hugs when he gets hurt. Clapping when he does something well. But, I truly don’t know if he needs them from me. I will spend hours at night wondering if he would notice if I never came back. Could he express it? Would he take my picture to people and point to my face wondering where I am?

I think the answer is no. And that really hurts my heart.

Being a special needs mom is a very thankless job. It’s different than parenting a typical child.

It’s really sad.

Anyhoo, I wanted to share a blog post that was on The Mighty today. It’s called, ‘To The Rock Star Mom of a Child on the Autism Spectrum‘ written by Teresa Cooper. Here is a link to her blog too. 

This blog really touched me. We question everything. We live off of caffeine. I once had a lady comment about my coffee drinking at 4 in the afternoon. Ha ha. We live in a world of exhaustion and failure with very few successes.

Dear mom of a child with autism,

I know you might be tired — tired from lack of sleep, worry and frequent meltdowns. You drink so much coffee, your blood is 80 percent caffeine. No one seems to understand your child or what you go through every day together. Almost daily it seems someone looks expectantly at you to gauge your reaction, as if to say “Surely you can do a better job,” because they think your child is throwing a tantrum over a toy.

You question yourself and your mothering abilities. If you work outside the home still, you may question working. Daycare systems sometimes lack the training to properly care for a child with autism. You deal with a lack of consistency in your child’s services at school. Some of your coworkers totally understand your situation, and others judge it, so you never know where you stand. You think that if you talk about all these feelings, people will think poorly of you, so tuck away the feelings and try to hide them from the outside world.

I know how you feel, because I feel it too.

Here’s the thing, though. You may feel exhausted, rattled and even useless sometimes, but you are a rock star. No one else knows how to calm your child down like you do. You are the master of the paperwork, the queen of IEPs and the expert negotiator. When it comes to advocating for your child, you work tirelessly to campaign for fair treatment and understanding. You take care of all the big stuff, but you also kiss the boo-boos, play with dinosaurs and dolls, and learn about your child’s favorite television shows and books.

You make a mean macaroni and cheese. You can get pre-tied shoes on your kids’ feet in record time. You find treasures in the dollar bin and can turn almost anything into a reward. You can spout out “first, then” statements like no one’s business and know the difference between a tantrum and a meltdown. If anyone asks, you can tell them where to find what exists in the community for children with autism.

Your children love you, and they know you love them. They know because, in all the ways that count, you show them.

Finally, remember your successes. Today you may not have found victory, but don’t feel defeated yet. Rejoice in all the victories, big and small, you have achieved with your child already. Remember that somewhere in the future, you will find more triumphs.

You’re a beautiful mother with a gorgeous, magnificent, dazzling child who simply sees the world differently than anyone else. From one mom of a child with autism to another, I encourage you to keep at it. You’ve got this.

 

 

 

 

Most Of All, I Teach You Giving

This. Always this.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated. If you allow me, I will teach you what is really important in life. I gift you with my innocent trust, my dependency upon you.

I teach you giving.

Most of all, I teach you hope and faith.

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