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

 

 

 

 

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

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.

 

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.

I Can’t Fix My Son

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

So, what was the event that caused my crash?

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

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

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

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

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

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

Anyhow. Thank you for sharing my journey with me!

An Open Letter to the Friend I Lost Along the Way

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

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

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

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

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

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

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

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

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

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

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

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

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Photo Credit: Melanie Houle Gunderson

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

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

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

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

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

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

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

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

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

Then, suddenly, I had a diagnosis.

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

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

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

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

And then I completely slipped away into this new world.

I stopped calling. I withdrew.

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

But my son is different from yours.

And I want to say that I am so sorry.

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

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

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

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

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

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

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

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

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

I’m just not there.

I need you to forgive me.

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

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

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

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Photo Credit: Kacie K Photography