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 sorry. And I am so unbelievably thankful that you are Cooper’s brother. You need to know that.

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.

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 the label.

But I was faking it and making it. I kept the perception up. And then I found out you were coming. It was a Saturday morning. I’d been awake all night. 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 kiddos with autism’.

I was so scared Sawyer.

And then it was January and you were here. And, oh my God baby boy, you were perfect. You were the most perfect baby. And I can say that because I’d seen the other side. You slept. You ate. You laughed. You were content.

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Photo Credit: Melanie Houle Gunderson

I want to tell you something.

You saved me buddy. I want you to know that. You were the best thing that ever happened to me. Not a lot of kids can say they saved their mom. But you did.

You saved me…in every essence of the word. 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! Oh my God the first time I heard you say ‘mama’ I couldn’t stop crying.

You gave me all the milestones and memories that a mother should have. You have given me more joy that I can put into words.

You were so easy that you allowed me to focus on your brother. On his autism. And for that I am sorry. I am so sorry his disability overshadowed you.

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.

But that doesn’t mean I love you any less.

I think of the all times we almost downplayed your development because your brother learned to use a straw. Or touch a raspberry. 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 terrifying. And frustrating. There are days when the only interaction you have with Cooper is a kick in the face. I can’t even imagine what you must feel. I’m a grown up and it’s hard.

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.

And often I am too tired. The exhaustion is real. While you are sleeping in until 8 am I am awake with your brother at 4 am. We live a whole day before you even wake up.

Part of me wishes you didn’t know the word ‘Autism.’ And then a tiny 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.

But I feel like I’ve been robbed too.  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.

My life is split up into three parts. Before Cooper. Before an Autism Diagnosis. And After the Diagnosis. Where do you fit into that buddy? I don’t even know.

Your daddy giggled about my forgetful brain and attributed it to lack of sleep. I can’t forget it though.

I think of the times I shushed your beautiful chatter and nonstop questions because I had been listening to your brother scream for hours and couldn’t take one more sound.

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

And oh the guilt. It’s hard to put it into words.

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 mom?’ 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.

Our life doesn’t make sense. I get it kiddo. I truly do.

I am so sorry that 5 times a day I say to you…’because he’s autistic.’

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.

And I remember last summer you looked at me and asked if we could go to a fair. And I explained how daddy was on a fishing trip so we couldn’t go because Cooper wouldn’t be able to handle the noise and lights. You grabbed my hand without missing a beat and told me you’d carry Cooper. You were three. I think my heart burst into a million pieces.

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Photo Credit: Kacie K Photography

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 Sawyer? 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.

The pressure of that is unbelievable. But it’s a real conversation that you and mommy and daddy will have to have. Someday we will have to talk about it. But not today.

Today you are 4 sweet boy. And we are celebrating everything that is Sawyer. 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. And love. And patience. I want to teach you that disabilities are not scary. And I want you to fight for what is right. I want you to fight for your brother. I want you to change the world.

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 truly see all the joy he brings to our lives. I want you to be brothers in every essence of the word honey.

I know you didn’t ask for this. I didn’t either. But you have been given a responsibility. Some call it a gift. Some call it a box of darkness. You are a sibling to a boy with severe autism.

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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!