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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8 Ways to Prepare Now for Your Autistic Child’s Future

A few months ago my autistic, but otherwise extremely healthy child was denied life insurance. In preparation for college, J and I started plans for the boys that could be converted into dollars for college tuition. Recently, we were notified that Cooper was denied coverage. I was irate. Autism is not a death sentence. My son is healthy. He has no medical conditions.

After following up I was informed that Autism is considered a vulnerable and at-risk life. He is more susceptible than most to dangers.

Well, I couldn’t deny that. I even had the anxiety to prove it.

I was crushed though. I felt like my baby had been given a death sentence. Never in all my Autism processing did I ever picture my son not living a long, healthy life. This was the prompt that forced Cooper’s dad and I to talk about the future.

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Our son was autistic and would be for the rest of his life. It took 6 long years for that to sink in and reach my brain AND my heart.

And, even though he is autistic his future is still very unclear. There is no crystal ball that tells us what the future will hold for my little fighter.

I still pray daily that my son will ‘snap out of it.’ I pray that he starts talking.  I pray that he improves socially, cognitively, behaviorally and emotionally. I pray that he grows up and attends dances, birthday parties and makes friends. I pray that he graduates and attends college. I pray that he gets a job and gets married and gives me a dozen beautiful grand babies.

This is not reality though. That is the land of hope and wishful thinking. It is time for our family to plan for our son’s future.

The reality of the situation is that Cooper will live with us for the rest of his life.

I avoided these conversations for years because I felt that if we talked about long-term care then we were giving up.

And whenever I did bring it up someone would always say….’don’t give up hope. You don’t know what the future holds.’ And then I’d feel guilty. I’d feel like a bad mom. But here is the deal. I know my son. I love him more than I can put into words. But it’s time. It’s time to talk about caring for this little boy for the rest of my life.

It’s time our family switched from ‘hoping for the future’ mode to ‘planning for the future’ mode.

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Kacie K Photography

The start of these conversations were brutal. It appeared that like many other special needs families, Cooper’s dad and I weren’t always on the same rate of acceptance. Rarely are both parents to a child on the same page when it comes to a disability. It takes time. We all adjust at our own pace. But I felt like I was carrying the weight of his future on my shoulders. It was crushing me.

After the life insurance debacle I broke through to him. Our son had a life long disability. To us he is Super Cooper. A cute, funny, silly, train loving little boy. We try not to think of him as being any different than his brother. But that is not the reality.

It took us longer as a family to accept that our son might live with us forever than to actually plan for it.

I personally feel the key is to start talking. Just start the conversation. Look at your spouse and say…’are we prepared for our daughter/son to live with us for the rest of their life.’ It’s a conversation starter my friends. It may end in tears or a fight. Keep bringing it up.

Here are the 8 tips I can offer you to prepare for your autistic child’s future:

  1. Initiate the Tough Conversation

    You cannot do this alone. Talk to your spouse. Ask the icky questions. Talk about the future. Talk about how raising an adult child factors into retirement. Where you are going to live. Finances. Remember though to go easy on your spouse. We all accept at our own pace.

  2. Start Talking

    Start talking about Autism. Talk to your neighbors about you child. Tell them your child is vulnerable and to take action immediately if they see them alone. Invite your local police officers over to meet your child. Talk about erratic behavior and how they handle it.  Have conversations with your family, friends and their kids. Talk to them about autism. Just do it. Talk about the future and what that looks like. They will be more supportive if they know.

  3. Start Researching

    No matter your child’s age raising a disabled little person is expensive. Start searching for information (state and county specific) around Disability Waivers and CADI Waivers, Consumer Support Grants, Medical Assistance and Medical Assistance-TEFRA, and social security. I encourage you to get a social worker. Social workers can really help ease the transition from High School to adulthood. Look into savings plans.

  4. Take Safety Precautions at Home

    Look into getting door alarms, fences, overhead lighting, etc. Make your home a safe space for your child. It will put your mind at ease.

  5. Keep your Child Safe

    Look into getting a tracking device for your child like Angel Sense. Get a medical ID bracelet. Also, if you have an older child who may be left home alone think about getting a bracelet for yourself. It can say something like, ‘vulnerable child at home.’ If you are in an accident people need to look for your child. Look into ‘nonverbal/autism/disabled’ signs for your car, car seat or even your home. Autistic people can act erratically in crisis situations. This will notify law enforcement of their disability.

  6. Talk about a Living-At-Home Situation

    Our child is most likely going to live with us for the rest of his life. This is not negative. This is reality. Talk to your spouse about that. It can make some people very uncomfortable. And that’s OK. We all feel and accept differently. One option is to have a house with a complete living space in the basement or a separate part of the house. Your child can have their own space and live ‘independently’. Think about having a PCA in your home.

  7. Talk About Group Home Settings

    The thought of this makes me completely melt down. I can’t think about it. Cooper is so vulnerable and susceptible to abuse and exploitation. So, if Cooper shows ANY desire to move out and live in an adult, semi-independent setting we will start a small care facility and use the home I currently own. We’ve already started researching this.

  8. Think About a Future Without You

    Finding a guardian for a special needs kid is different than carrying for a typical one. It can be for life. Think about who you would ask to care for your child or adult child if something were to happen to you.

This is the icky side friends and I talk about it often. I talk about it because if I don’t it paralyzes me.  I am scared of carrying for a disabled adult. And that’s OK. I’m going to figure it out…but I can’t do it alone. As I look to the future I need my son’s village more than I ever thought possible.

I want you to know that you can do this. You are so much stronger than you ever thought possible. And you are not alone.

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Kacie K Photography

My Worry as an Autism Mom and Why It Never Rests

Parenting a child with special needs is so much more than helicopter parenting. It is never taking your shoes off, being ready to run, casing every room, knowing every exit and danger, being drenched in sweat, never sitting, searching your child’s body for marks or bruises, up all night worrying, parenting. It consumes me at times. And deep down I worry that it is destroying me.

It’s not like it happened overnight. It was an evolution. I am a pretty chill person. My kids fall and I wait for the severity of the scream and their reaction before I dive into mom mode. I believe in walking it off. Letting kids fall of bikes. Leaving a little skin on the field.

That’s the person I am…or was…or trying to be with my 4 year old. But as much as I wish I could just relax and sit back and watch Cooper play I know in my heart it isn’t possible.  He is constantly in danger.

I am an autism mom. I am caring for the most vulnerable of children. I am his eyes, ears, brains. I am one step ahead of him at all times.

And because of it I am slowly driving myself bonkers.

My worry never stops. At any given time I can tell you all the given dangers in a room. I know when Cooper has something in his mouth. I know when he is going to run. I know where he is going to dart to. I count the exits. I know every item that can be thrown. My shoes are laced up. I am in comfortable clothing. And I am ready to chase my kid if needed.

Trying to describe the emotional weight of caring for an extremely vulnerable child is impossible…but here is my attempt.

Ramblings of an Autism Mom Around Acceptance

My favorite topic to blog about! I’ve been noticing a trend. Every morning for the past few weeks I wake up to dozens of emails from parents looking for hope, help and guidance.

I TOTALLY UNDERSTAND.

I did the exact same thing when Cooper was younger. I would stay up late…usually after some sort of meltdown or a particularity hard day. And I would search for a blog where the child reminded me of Cooper. And  I would reach out. And in a really weird way I would feel guilty for reaching out to a stranger. But it was so much easier to say all of my worries to a stranger. If I said them in real life it felt too real. I felt like a traitor. I felt weak and embarrassed.

First, keep emailing me. Keep reaching out. It’s good for you and and it’s good for me. I enjoy hearing from you.

Second, I spent the day thinking about how I got to the well rounded peaceful place I am today. BAHAHAHAAAA! That was a joke. I am a mess. But I am a mess who smiles and laughs and is mostly at peace with her place in life.

How did I get here?

I gave into Autism.

Let me say that again. I gave into Autism.

I gave up the perception of what I wanted life to be. It was really hard at first.

I wanted to go out to dinner and join friends at events and go on family vacations…but, unfortunately, we couldn’t do those things. And the second that I accepted that I was able to relax and find peace.

Check out my video. I give more details. Hugs to all of you!

Dear Mom, I Read Your Letter Today

A few days ago I shared a letter I wrote for my son Sawyer. You can read it HERE.  It was a toughie to share. It was brutally honest. It was real. And I really put myself out there. I purged every ounce of worry and self-doubt that I have about raising an autistic child alongside a typical child.

Let’s get something straight.

Cooper is an amazing little boy. He is funny and sweet and brings more joy than I can put into words. But…it’s different for me. I am his mother. He came from me. I am here on this earth to care for him. And I am 33 years old. I got some age and wisdom behind me.  I can accept the challenges that our life offers more than a four year old. Or a 10 year old. Or a teenager.

As I sat and read the comments on my letter I started to spiral…’you love Sawyer more.’ ‘I feel bad for both of your sons.’ ‘You don’t love Cooper.’

I had failed.

I thought long and hard about it. Was I wrong to worry about Sawyer resenting his brother?

 

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Quite possibly I guess. I’m not expert in child development.

And then it hit me.

I am not a sibling to a child with special needs (nor were the commenters). I am simply the mother. And what the hell do I know about growing up with an autistic sibling.

I had meant to help others by writing that letter. That was my only objective. Despite the thousands of amazing comments I worried that I had failed.

Then this letter showed up in my inbox. It was written to me as if it was from Sawyer. The author’s name is Kara Dymond. And it changed my life and outlook on everything. Just like that. I was saved again by a stranger.

Grab your tissues friends.


Dear Mom,

I read your letter today.

You should know that the person I am today is because of you, and because of my brother.

Know that I never resented the focus on him. Not really. I watched, and learned, what it means to love someone. To nurture them. To not only care for him, but to allow him to care for us. Not in the traditional sense, but in his way. Love is not a spoken language. He makes me laugh, deep belly laughs, and smile till the creases in my face hurt. He is pure, and the euphoria we feel when he is happy and with each small step forward is unlike any other joy. Being with him simplifies life to what really matters. Cynicism and self-absorption fade away. We experience life in full color. Those are the times that make the grief, the stress, the anger at the world’s injustice seem unimportant, if only for a while.

And those times you spoiled me? These helped me to learn to appreciate the sweet moments, and to take nothing for granted. That the chaos of life is tempered by levity.

You wondered how I would feel about my brother, now, as an adult. You never had to tell me what my role would be; I knew. There was no doubt. As I grow older, and you grow older, I worry too about outliving my brother, just as you do. He factors into my every decision. But it is not a sacrifice.

My best qualities are inextricably linked to my brother. I have an empathy and interest in others I would not have, without him. I understand the difference between treating someone equitably and treating someone equally. You taught me this.

In a way you could say my brother keeps me out of trouble. I don’t waste time on the wrong people. I have a list of qualities I look for in a partner because I am looking out for someone who will love us both. This may also seem like a sacrifice but it is not. I want a partner who sees the innate value in others, and who can move beyond fear to meeting him where he is.

He is a gift. He is the reason I now teach children with autism. When I was offered the job, I wondered if it was a good idea. Would it be too hard to work all day, sharing in the pain and joys of other families, to come home to ours? But then I realized: would anyone else love these students the way I do? Six years on, I have no regrets. And I want to change the world for my students. Which is why I am now getting my doctorate in autism education. Because the world is changing and everything he has taught me can be passed along to others. Because he really is the greater teacher.

I know there is a grief so deep in you that it is hard to get out of bed sometimes. But we are so much more whole than we would be without him. There is lightness that permeates the darkness.

He may not say it, and I definitely don’t say it enough, but thank you. I love you, for all that you have done. I am happy to help. I am grateful to help. I have been preparing for this for as long as I can remember.

Don’t worry, Mom, I got this. I got you.

Love, Kara


As I sit here and read this letter over and over again the tears are streaming down my face. Like the broken record I am I can say that I had a long night. I am exhausted.

Today I am feeling the strains of  motherhood…not just autism.

And then I read this letter from Kara and a feeling of calm washed over me.

This is going to be OK. We are all going to be OK. We are raising amazing kids. Some with disabilities and some without. We are teaching them love and kindness and we are ALL doing an amazing job.

I reached out to Kara and thanked her immensely for her words. I also asked her to tell me more about her brother and their relationship. It’s pretty great stuff. She is an absolutely amazing woman. She is making a difference at home and in the world. I can’t even imagine how proud her mother is of her!

Danny

My brother Danny is soon to be 29, and I am a few years older. We have two other older siblings. My sister now writes Autism policy for the province of Ontario, and like I mentioned, I teach students with autism and am getting my PhD focusing on supporting teacher development in the area, so D’s impact on all of us has been very apparent.

We are the closest, in age and in friendship.

Danny has autism, developmental delays, and acute social anxiety disorder. He was very late to speak, hid under chairs at preschool and I don’t know if he ever spoke at school. He speaks with immediate family, and is actually hilarious (mimes as if he was different characters sometimes, is the pun master) but withdraws around others.

He is incredible at video games, and now writes his own ideas for story lines, character descriptions etc. He has extreme intelligence in some domains and he struggles to function with many elements of daily living. Great with routines, once he has learned them, and predictability and all the rest. He lives with my parents, and stays with me at certain parts of the year so they can get a break/vacation, and because he needs one too!

He goes to a day program that teaches life skills and gets him volunteering stocking shelves a few days a week, and he has a job shredding office documents at my dad’s office. He is usually pretty happy though like all of us has his days where he is overwhelmed by his feelings and can’t understand why everything is so much more difficult for him. A lot of trouble identifying and expressing feelings and their cause.

A few years ago he patted me on the arm and said I was a very nice sister. It was the best compliment I have ever received.

Danny also adores my boyfriend, who once said, without knowing it has always been my plan, that Danny should live with us one day. My heart burst.

 

Confessions of a Special Needs Parent

Parenting is hard.  I think we can all agree on that. You are raising a tiny little human from birth to adulthood without an instruction manual and silently praying they turn out sane and loving.

Now imagine if that tiny little human has a diagnosis of some sort. Autism. Cerebral Palsy. Traumatic Brain Injury. The diagnosis could be physical, emotional or neurological. It could be obvious. Or maybe it’s invisible to the outside world.

Scary right.

You aren’t a doctor. Or a therapist or a physiologist. There is no instruction manual. It’s just you knowing in your gut that something is wrong. It feels like a roller coaster. It feels out of control. And just like parents of typical kids…you have no idea what you are doing. But yet, you are entrusted to raise this tiny little VULNERABLE human.

At first you don’t want to acknowledge it. Then, you don’t want to believe it. And once you get over that hurdle you want to talk about it. You need knowledge. You need to vent. You need a friend. You need people to understand.

Parent Shaming

You turn to your spouse. Your family. Your friends. Whomever will listen. You need help. You need someone to hear you. But the conversation seems awkward. Strained. The friend looks at you funny. You see judgement. Doubt. They don’t relate. They don’t understand.

You try in the break room with co-workers. You try to vent during happy hour. But it never seems right. The looks make you feel shameful. No one gets it.

So, you stop talking.  You silence yourself. You start to wonder if you are complaining. Maybe you are just bad at the parenting thing. Maybe, just maybe, you are making some of it up in your head.

You start to doubt everything.

From that moment forward you struggle silently. You keep your mouth shut.

When you do mention any of your struggles you feel the need to put…’but I love my child’…in every sentence.

I want to tell you that this is wrong and it is an inevitable part of raising a special needs child. It happens to me frequently as a writer and a mother. So, in retaliation, I asked special needs parents to confide in me. I asked for their secrets. Their confessions. I asked their deepest, darkest thoughts. I did this because you and I need to know that we aren’t alone. Our feelings are normal. I also want to shed a little light on what it is like to live in a day in our life.

It’s a secret world.

My Advice To You Dear Friend

On your darkest days I want you to read these words from your fellow parents. And you will know that you are not alone. What you feel is completely normal.

I want to tell you that you will make it through this journey. You just need to change what the end result looks like. Make a few adjustments. Or, A LOT of adjustments. You prayed for this child like every other parent. And not once did you pray for a child with special needs. So, you need to adjust. Make modifications. All while going through and living the hurricane of special needs.

That takes time.

Go easy on yourself. Feel every feeling. Be upset. Be sad. This life is hard. And then learn to laugh. Because that’s the only damn thing that will get you through.

I promise you with every ounce of my heart that you are going to survive this.

We didn’t choose this life. It chose us.

225 of you sent me confessions. These are my favorite.

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The Confessions That Touched Me The Most

”I love my daughter to the end of my entire being. I prayed so hard to become a mom and she is who I got and I love that I was blessed to have her, but sometimes, I really hate that this will be my life forever. I have people who encourage me to see the beauty in autism. But the life I live everyday isn’t always beautiful.

“I’m scared I don’t love my son enough. Through the trauma of the diagnosis and the daily difficulties we face I sometimes fantasize about running away. I wish my life was different.”

“The bad days are so bad. And the good days are bad too. It almost seems unreal. Why is this so hard?”

“I’m addicted to over the counter sleeping pills. My anxiety is so high over not sleeping that I have to take a sleeping pill just to fall asleep. And I don’t even care.”

“I haven’t told my boys (ages 6 and 4) that they have autism. I know it’s coming. I am terrified.”

I’m not planning for college. Instead I’m planning a way to pay for her care for the rest of her life.”

“I have to message this one because it is so dark to me and the thought scares me and breaks my heart simultaneously. I fear my son will require constant care for his whole life and I’m scared one day I may resent him for it.”

It’s all my fault. #AUTISM”

“I hate people who say it’s a blessing. Autism is a curse. My son is higher functioning, so was diagnosed later (his early symptoms were to subtle to get anyone to listen). No child should have to go to treatment all day instead of playing. I will never consider having another child, I love my kids, and EVERY DAY is a struggle for them, and us. Every time I call their names and get no response, I crumble inside.”

“I know in a weird way I should be thankful that my son is so severe that he won’t know he is different. He won’t know he is being bullied. And in a way it provides me comfort. But in a way it crushes me even more. My son doesn’t have any idea what is happening around him. How can I live with that?”

“I fake everything. I am always smiling. I am always laughing. People say I am the strongest woman they know. LIES. I am heartbroken. I love my kids. I love my husband. But I am a different person. And no one understands. I feel like a shell of the woman I used to be.”

“I was telling my best friend I don’t want to have another child because I’m scared they could have special needs or have them worse than my son (even though I want more kids more than anything!) And she said “but that’s just hard on you because you have to do a lot for him…would you change anything about him?” And I had to answer no I wouldn’t change him, but the truth is…I would. I would change EVERYTHING!

“Some of the sounds my son makes actually haunt me. I have to wear head phones at times.”

Confessions On Parenting

“I have resentment towards my child.”

Sometimes the pain makes it hard for me to even look at my daughter.”

“I relive my pregnancies trying to figure out what I did wrong.”

“I always tell my son he can do anything, that we can do anything. Sometimes I’m actually not sure if he can but we keep trying anyway. (he has proven me wrong many times)”

“I have a “sad” moment every single day about the things that my son will miss out on because of his non-verbal, severe autism. I do everything I can to help him, but it never seems like it’s enough. I allow myself one good, gut-wrenching cry a week. If I didn’t limit it, I wouldn’t be able to function. He was diagnosed 2 and a half years ago, and it hasn’t gotten easier.”

“I am jealous of parents that have kids that aren’t severe. First I was jealous of parents with normal kids. NOW I’m jealous of autistic kids that talk.”

“I’m cheating my other children.”

“Sometimes I put him in his room for an hour with the tablet and just cry by myself while I clean up the terrible messes he makes at home. I know he’s safe and I have a second to myself to just have a pity party. It’s terribly lonely. Even though my husband understands, he doesn’t truly get it. I have to worry about all the quirks, preferences, schedules, and everything else. It’s very weighing! And as much as parents to typical children say they understand and support me, it doesn’t really help. There’s no end!”

“I hate when my son doesn’t have services because I have to deal with his behavior for the whole day.”

I see no future for my child and it breaks my heart daily.

“I love my child but there are days when I really don’t like him.”

“I’m tired of all the damn therapy. I don’t know if it’s working. I think we should give up but society won’t allow it. So, we keep doing it. And there is never a break.”

“Its hard for me to reach out because feel like I won’t be accepted because my son is high functioning. I feel shunned like people won’t think I can relate because my sons disability isn’t as obvious as others. But the older he gets the more his differences are obvious to everyone around. I get “he doesn’t look like he has autism” or “he will outgrow it” and it’s frustrating explaining things because it’s not visible.”

“I let my NT 3 year old have a NUK and sleep in my bed because I have so much guilt.”

“I feel like I’m never enough. I can’t do it all but I pretend I can and it’s exhausting.”

“I spend days wondering if I can handle having this child with me until I die. I don’t think I can.”

“I am a failure because this is so much bigger than me. And I am not strong enough.”

My kid deserves a way better parent. I do everything I can and it’s never enough. He always needs more. I have nothing left to give.”

Confessions On Marriage

“I am angry at my husband because he gets to have a job. I have a college degree too and I can’t work because no one else can take care of our son.”

“I am jealous of my kids dad. He spends his time with our two younger children while I am forced to miss every event because of our autistic daughter. It’s not fair.”

I know my marriage will not survive this.”

“I hate my husband. He helps with our son but he doesn’t help me emotionally. And that’s almost worse.”

“Autism destroyed my marriage. Now I am divorced. And I know I will never meet anyone because of my son. I tried dating and the men couldn’t handle it. I am going to be alone for the rest of my life. Wait, that’s wrong. I’ll have my son.”

“I am never going to stop grieving and my husband hates me for that. And I hate him in return. I don’t understand why his heart isn’t broken.”

I think my wife is autistic too. I am surrounded by loneliness.”

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Confessions On Life

“I give up almost everyday. Actually that’s a lie I give up everyday! Sometimes as soon as I wake up.”

“I fear I won’t survive this.”

“I just gave myself the nickname….crybaby quitter.”

“I feel like I fail in every other area of my life (marriage, home, friendships, other children etc) in an attempt to parent my ASD kiddo.”

“I feel hatred and jealousy towards women who have a bunch of kids (4plus) and there all typical … I only have 2 and ones autistic . I know its terrible but it makes me sad and resentful. Always makes me wonder why my son and not theirs.”

“I killed myself as a single, working mom to get degrees to take care of them without help only to have my child with autism take away my career and I love him but I am mad at him for it.”

“I avoid taking my son to peoples houses. Not because of how hard it is in me. I wish. I’m embarrassed, and so sick of having to try to rationalize things. He pooped on my friends floor once because he didn’t like their toilet. He chews up their stuff. Drops expensive things. They don’t understand autism and I feel judged and so embarrassed.”

“I  am a preschool teacher and it’s so very hard because I see what your “neuro-typical” children can do and I feel such a huge amount of resentment and wishes of my own daughter being able to do the same things I teach every day–writing your name, etc etc.”

In the past I have contemplated suicide.”

“I see and know mother’s who drank and did drugs while they were pregnant and their kids are normal. It makes me crazy. I hate them for it.”

I secretly cry every day. My husband has no idea. He thinks I’m taking a bath over doing laundry.”

“I lost my relationship with God because of this.”

Every day is exactly the same. There are so few moments of sunshine that I can’t stand it. I need it to get easier.”

“I have a co-worker who does nothing but brag about her niece who is the same age as my daughter (5) and how she’s reading, does this and that, basically the sun shines on her ass and she’s perfect in every way. I get so heartbroken by her bragging, inside I’m dying a little bit each time and I just have these feelings of “I wish my daughter could do that.”

“Sometimes I just sit and cry because I don’t know what to do.”

“The weight of the guilt is more than I can handle.”

“My youngest has severe, nonverbal autism. My confession? Some days I am just tired of changing diapers, giving him a shower, brushing his teeth, clipping his nails, shaving his face. I’m tired of getting him dressed, tying his shoes, cutting his food into bite sized pieces. Tired of monitoring his screen time. Tired of the stimming. Tired of not being able to just run to the store when we run out of milk. Tired of not being able to stop for dinner on the way home from our other sons’ games – tired of it always being the McDonald’s drive thru and always having to tear chicken nuggets into four pieces before handing him a bag of fries and chicken pieces- half of which will end up on the floor of the suburban. The thing is — feeling tired of these things– even though I’ve been doing it all for over 19 years now- brings me guilt. I have a handful of friends who have had to bury their children. There is no greater pain than that- and what they wouldn’t give to tend to their children rather than mourn them the rest of their days…So most days, I’m good. But some days, I’m not… and the guilt is stifling.”

On Family

“My parents told me my son is spoiled and just needs to be disciplined. They blamed me and my husband because of one overnight stay with them that was “full blown Autism.” March 7th will be one year since I’ve seen or spoken to them other than an email and one family gathering. I chose my son and husband.”

“Mine is a little different because I’m not technically his mom…Mine is I was done having babies 17 years ago and I shouldn’t have to be doing this. I absolutely loathe my daughter at times for not being a mother. I’m supposed to be the Grandma that spoils them and sends them home. Instead I’m feeling all of the same things as you … I wonder how long I can honestly care for him. He’s five now and I’m already exhausted, what happens when he’s 10 or 15, etc.”

“It drives me crazy when people complain to me about their kid talking too much. Do you know who you’re talking to?! I would give anything (ANYTHING!) to have me son talk my ear off!”

“I’m terrified that my husband’s parents are going to love the ‘other’ grandchildren more than my son.”

I hate my parents and sister for not helping me. I hate listening to them talk about their ridiculous problems. If they only know that every day of my life is a war. And they don’t care to find out.”

“Before my daughter was diagnosed I was crying to my mom about how lost and heartbroken I was. She looked at me and started crying and told me ‘this was hard for her too and that she didn’t like to hear about it.’ That night I googled narcissistic personality disorder. I will never forgive her for not helping me more.’

“I have four siblings, three of which live with 10 minutes of me, and I wouldn’t trust any of them to care for our son should anything happen to us. We have a meeting with a financial planner next week, and I’m not looking forward to the conversation of who i would want to be the guardian. Can I say ‘none of them’?!”

“I hate my siblings for taking their kids for granted.”

On the Future

“Why me? Someone tell me…why me? What did I do wrong?”

“I am 5 months pregnant. I just found out I am having another boy. I am devastated because I know that autism happens less frequently in girls.”

“I will never have another child. I actually made my husband get a vasectomy. I could never do this again.”

“I hope my daughter never has to live without me, it may sound selfish, but I’d rather live with the heartache of losing her than not knowing if she is properly cared for and hurting and not able to express herself.”

I grieve over the life I should’ve had.”

“My heart breaks when I think about huge milestones that we will miss. Graduation, Prom, Senior Pictures, College, Marriage, Grandchildren. I’m never going to have any of it. I should’ve had more kids. But the fear was too great.”

I wouldn’t wish autism on my worst enemy. I cringe and get jealous and emotional when I see a “normal” kid my sons age. When I see them talk or do normal three year old things that mine should but doesn’t it stabs me like a knife inside. It kills me.”

“I don’t understand the purpose of my son’s life. I love him. He is my world. But what is he contributing to society? What is his purpose for being here?”


This is a glimpse into the private world of special needs parenting.

We aren’t all that different from parent’s of typical kids. We struggle. We laugh. We love. We survive. It isn’t always beautiful. Often it can be scary. But the world should NEVER doubt the love that we have for our kids. It is fierce.

How do we advocate for something we hate so much? I hate my son’s disability but I will travel to the end of the world to help him. I am motivated, energized, devastated and heartbroken all at the same time.

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Kacie K Photography

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