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

The Sentence That Changed My Life

14088725_1417495344927588_794622903_nI am often asked what was the pivotal thing that changed my way of thinking about autism? Or about my attitude towards my son’s autism?

How did I take that first step towards acceptance? I had a mom tell me it took her 5 years to get to a comfortable place with her child’s disability.

Well, I would agree that mine took 5 years. Maybe closer to 6.  Even today I still have struggles. Like ordering a handicap sticker. Or visiting my sons school and saying, ‘my son is in special education.’ Those are toughies. Mostly seeing other kids. That’s the worst.

Acceptance is a journey much life grief. And it’s not linear.

Mine was a series of falls and trips into acceptance. It was hella messy and involved multiple moves, lots of denial, loss of friends, even more tears and a divorce.

But yes, I have identified a pivotal part of the journey.

We were living in Duluth. I was trying every single thing I could to get my ‘speech delayed’ child to start speaking. He was 2 and obviously a late bloomer. (Insert eye roll and snicker here)

Summer had just begun. I knew in my heart that something was seriously wrong with my son’s development but at age two it was still somewhat hidden.

MANY 2 year olds are speech delayed. That is a fact. I also had a boy. Many 2 year old boys are speech delayed. He pointed. He waved. He made eye contact. These are facts. And I held onto them tightly.

I had just changed my schedule at work so I could be home with Cooper every Wednesday and Friday.  The truth is the majority of his medical care and therapy care fell under my role as a mother. This is not a bash on Cooper’s dad. I assumed the role. I wanted to do it all. I wanted to fix him. And no one could do it as good as me.

Because of this I struggled to maintain a full time job. This is a real problem for parents of kids with needs. Or any caregiver for that fact.

So, it was my first summer home a few days a week with my kiddo. I loaded us up with therapies and play groups. I researched every park and toddler type activity in a 20 mile radius.  I found every single Pinterest activity under the sun for toddlers. You know the ones. Shaving Cream Sensory activity. Sand bins. Paint with potatoes.

I did it all. And holy shit did we fail.He either refused to participate in the activities or he destroyed them. It took me another year to get the sand out of my home and even longer to get all of the shaving cream off my ceiling.

Play groups were a bust. Cooper wouldn’t participate. He wouldn’t play.  He pushed other kids. He hid. We tried going to parks. Nope. He couldn’t climb. Instead he ran and ate sand. We tried ECFE. This was the worst one. He refused to separate from me. Every other parent sat and drank coffee while I chased Cooper or held him screaming at the door. ECFE is great when you have typical children. We did not fit in and I still have nightmares about it.

I tried simple things like feeding the ducks. Or throwing rocks into a lake. All fails. No activities worked. He wouldn’t do any of them.  We got to the point where we couldn’t leave the house.

We tried speech at the hospital. Fail. We tried Occupational Therapy at a place focused on kids. Bigger fail.

We started going to therapy at a clinic specializing in language disorders. EPIC FAIL.
This sounds dramatic. It’s not. These are facts. I called Cooper’s dad every Wednesday and Friday crying. He worked at a bank. I called hysterically. It wasn’t pretty.

He told me to quit is all. I refused. Instead I did more.

I started to think I had the only kid that wouldn’t respond to therapy.

I bet you are wondering what the professionals were telling me. Like the Speech Therapist and Occupational Therapist. Nothing. I was smiling. I was faking my way through. We would laugh. They would tell it would be better next week. I often heard, ‘everyone talks eventually.’ That was a common one.

About this time Cooper got another infection. I brought him to the Pediatricians office and I had a meltdown. I sobbed and asked what was wrong with my son. But I think I ended every sentence with…but it’s SO OBVIOUSLY not autism.

She recommended we bring in the school district. We started with the Help Me Grow program. It was terrible. To this day I have the biggest distaste for the Help Me Grow program. Then we moved to the next level which was a family service plan. What this means is that a person comes to your home once a week and attempts to do therapy with your child. This did not work for us.

Cooper threw things at them. He ran. He refused to play. Or participate. I dreaded the visits. I dreaded the days off with Cooper.

Every week it was something new.

We saw doctors. Always more doctors.

No one mentioned autism.

I was making myself absolutely crazy trying new things. Then I started Gluten Free. Dairy Free. I added in Fish Oil. Then probiotics. I took foods away. I added foods in. I pureed every single vegetable you could think of made foods from scratch.

I read every single blog. But only blogs where they kids improved. They had to have a happy ending.

We started going for long walks around our 5 acre yard. He liked to wander. So I followed. That became our day. Wandering the yard and watching Thomas the Train.

Then one Thursday afternoon I was picking Cooper up from daycare.

I remember being especially exhausted. I had a 4 month old as well. A job. A family. A kid with a speech delay.

Cooper had been going to this daycare for a little over a year. It started fine but as Cooper’s delays and challenges became more apparent I could tell there was something brewing under the surface of our daycare/parent relationship.

Every pickup would give me a feeling of dread. She would tell me that he didn’t play with the other children. That he wandered around. He was anti-social. He threw. He refused to eat.

Each day at pick up I felt the weight getting heavier. I was telling Cooper’s dad all these things and he would say….’she doesn’t say them to me.’ WTF went through my head.

So, on this Thursday I remember getting out of the car. She walked up to me and told me that it was time for a serious conversation.

And then this woman…a daycare provider…not a doctor or a teacher…a woman I thought was my friend….said the harshest words that have ever been said to me. Today I am 33. This happened 4 years ago. And I can still remember it so vividly.I still feel that pit in my stomach.

She told me that I needed to accept that Cooper was different. She said that I needed to prepare myself for the future. I was living in denial. She said he was never going to speak. He would never ride a bike. And he most likely would never make a friend. She’d seen it before. She knew kids. Her dad was a speech therapist. Cooper was different and not like the other children.

She started comparing him to other kids at the daycare. So and so is the same age and he is talking and playing. Look at so and so and how she is playing hide and seek. Now look at Cooper. He is sitting in the driveway eating sand.

I was stunned. I felt sabotaged.

Imagine someone saying those words to you. Imagine what that would feel like.

Then she dropped the bomb.

She told me I was neglecting his care. I wasn’t doing enough. She said it was apparent that I was in denial and I was causing him harm by not getting more help. She also said she couldn’t help him anymore. He could continue to go there for daycare but she wasn’t going to teach him anymore. She also wasn’t going to ‘fake’ his work or art projects and that I would no longer be receiving mother’s day art projects or Christmas projects. There was no point. I didn’t need to see her coloring.

I stared at her. I remember thinking about strangling her. I thought…people have killed for less.

But instead I just stared. I knew if I spoke I was going to cry. I was paralyzed. I had a huge lump in my throat.

I was so confused.

At every pickup I would tell her about all the therapies we were doing. I was running myself ragged. I was neglecting my other baby. I was neglecting myself and my marriage.

The only thing that mattered was Cooper and fixing him. I was consumed by his care.

And yet, this woman told me I was doing nothing. Even worse, she thought I was actually neglectful.

I nodded. I backed away without speaking and put Cooper in the car and left.

I went home. I crawled into bed. And I cried for the whole weekend. Let’s call this my low point.

I had failed my son and my family. I struggled to get out of bed for a few days.

For me that was a turning point.

What she said to a first time mother of a two year was completely and utterly wrong. She ended up calling me and apologizing but the damage was done. To this day I think of those words…. He will never speak, never ride a bike and never make a friend.

I struggled to articulate my feelings to my mom and my husband. I mostly just cried for a long time. I was crushed. I had a broken kid. Or at least I thought not speaking, not riding a bike and not making friends meant I had a broken kid.

And then a few days later I woke up. Or, I rose up. I snapped out of it.  And I made the appointment for an autism evaluation at Fraser.

But the funny twist in all of this is, yes, she was right. But she was also so wrong.

Cooper is 6 and he doesn’t speak. He doesn’t ride a bike and he has never played with a friend. And it’s not the worst thing ever.

That was the pivotal moment for me.  At the time she gave me what I thought was the worst case scenario. I took it like a death sentence. Her words almost killed me.

And now, at age 6 my answer to her would be, ‘so what lady.’ Cooper is fine. He is happy. He is healthy. He doesn’t need to do those things to be my son.

She painted a picture of doom and gloom that ended up being true. And, it’s not all that bad. So, my kid doesn’t ride a bike. So he doesn’t have friends. There are hella worse things in life.

The worst sentence ever uttered to me gave me the anger and strength to get where I am today. Funny how that all works out.

 

 

Having the Only Autistic Kid at the Party

Morning all,

My blog post was featured today on Break The Parenting Mold. Break the Parenting Mold was founded by Jen Kehl and Kristi Rieger Campbell in 2016. It began with the dream of bringing a large amount of resources together to help parents of children dealing with special issues.

Anyone that follow my blog knows that I am utterly obsessed with this video by Kristi Rieger Campbell. I watch it all the time. I can’t even watch it right now because I will start crying. That woman is my spirit animal.

Anyhoo, give them some love. Great resources. Here is a link to my post, ‘Having the Only Autistic Kid at the Party.‘ So excited!

I wrote this a few years ago: “You will be crushed the first time you notice people staring at your baby. And you will be crushed the first time you noticing kids teasing him. The hurt is inevitable and it’s not going away. But don’t hide. Autism is already lonely enough.”

Holy crap that is still true. Cooper still flaps and jumps and rolls. And holy moly is he loud. We have taken nonverbal to a whole new level. But he is happy. And he finds joy every single day. And we keep going. We go to parks and stores and do our thing. And we put on the thickest skin you could ever possibly imagine.

I Begged God To Fix Him Too

I work for a website called Next Avenue. Today, they shared a story titled, “What Will Happen to Adult Children with Autism?”

Check out the article. It highlights a new film called Life, Animated that sheds light on the realities that families like ours face.

I sobbed at my desk like a little baby. When the doctor says…Let me tell you about autism. And some of the kids never talk again.

I feel that in my heart. I feel it in my stomach. When the mom says:

“I’m just going to hold you so tight and love you so much that whatever is going on will go away.”

I’ve felt that desperation. I begged God to fix him. I begged my mom to fix him. I begged Cooper to fix himself.

It’s hard for me to even watch the video. But do it. Watch it. It’s really quite wonderful.

Most Of All, I Teach You Giving

This. Always this.

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

I teach you giving.

Most of all, I teach you hope and faith.

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Cooper Has The Kind Of Autism No One Talks About

I stumbled across a post today on Facebook titled, ‘My Son Has The Kind Of Autism No One Talks About-Term Life’.

“Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people. This is the autism that no one talks about. This is the autism that no one wants to see.”

This is Cooper.

I have been fighting how severe his autism is for so long. I refused to say it out loud. We faked it. We hid it.

It’s been an internal battle that has kept me awake at night. Caused me to lose weight and gain weight. Caused me to drink way too much. Caused me to lose friends and family. I’ve pushed people away. I’ve made terrible mistakes and choices trying to escape the trapped feeling Cooper’s disabilities have caused me. I ran from it. I hid from it. I took it on headfirst.

And you know what….NOTHING WORKED.

He’s still autistic. He’s still severe. Still non-verbal. And I feel more trapped then ever. Our family is still broken.

I couldn’t outrun it. No matter what I did he is still severe. I feel like I failed.

I still feel guilty when I say Cooper probably isn’t going to talk. He isn’t going to be the boy that gets asked to prom. He most likely won’t shoot the winning basket at a basketball game. I know it in my heart. His autism is severe.

He isn’t a genius. He has no amazing skills.

He’s just a boy. My boy. My challenging, exhausting boy who with an isolating disability.

We stopped going places. We stopped going to birthday parties and parks and beaches. We hide in our home on the weekends. All because I can’t handle my own son alone. He’s too big. I can no longer carry him…although he requests and I will try. He puts everything in his mouth. He picks his nose constantly and eats it. He screams and shouts and points. He flaps. He destroys.He typically refuses to wear pants. He runs around naked constantly. He wanders. He refuses to sit.

He’s five. Wait until he’s ten. Or twenty.

I post adorable pictures on Facebook of my sweet boy. I do this because I love him. And people are not away of what severe autism really is. It’s not cute. It’s not a joke. It’s real and hard and scary. It’s head hitting. And a whole lot of kicking. And getting punched in the face in front of people and trying not to cry because you are the mom.

It’s laying in bed at night thinking about how you can’t die before he does. And realizing how poor you are and putting money away for him isn’t possible. It’s really big things that rest on your shoulders.

It’s broken relationships and broken people.

It’s giving up every single damn day and starting over at 4:30 am the next morning. Because that’s just the kid part. Then you have the fight for therapy and services. You have appointments and emails and the money side. The list goes on.

Like this lady says in her wonderfully written post…WE ARE NOT AWARE.

Walk a mile in my shoes. Hell, take 5 steps. Then you’ll know.

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I Am This Mom

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This image has been going around Facebook for a few weeks now with the following caption:

Disabled people in US: 19%
Transgender people in US: 0.03%

THIS is the bathroom issue I am more concerned about. Having a private place to change my beloved son with dignity, privacy, and cleanliness…not on a dirty bathroom floor with a large cot I have to carry everywhere with us. We consider ourselves “fortunate” when we can find large private family bathrooms like the one pictured…but most places are stalled restrooms where even the disability stalls don’t have enough room for all of my son’s equipment and me.

It keeps popping up in my news feed. At first I scrolled past it. And then I read it. And then I stared at the image for five minutes.  Then I got mad about it and every memory of changing Cooper in a public restroom came flooding back.  Then I shared it and waited for someone to challenge me or call me out on Facebook.

They didn’t.

I shared this picture because people don’t know that this stuff happens. I don’t talk about it. I don’t call up my mom or a friend and complain about changing Cooper on the bathroom floor of a Target.

Why you ask?

I guess I didn’t think there were any other options. I thought it was my ‘fault’ for bringing my special needs son out in public and risking that he would go to the bathroom. Or heaven forbid I would have to pee. Or his brother.

That’s the real tragedy if you ask me. We hide.

We are the parents that see things and do things that a lot of people don’t know about. We give enemas and change adult diapers and get kicked and hit in the face and we cry a lot. And we don’t usually talk about it.

We actually typically don’t leave the house.

Cooper has been in a public restroom three times since he was 2 years old. As a 2 year old he would run out of bathrooms while I was peeing. He would psychically twist out of his shirt if I wasn’t holding him on my lap. The final time he ran out into a waiting room while I was sitting on a toilet and I made eye contact with a man when he darted out the door. I said never again.

Note to stores: Put the locks higher up and have doors that go to the ground. Thanks.

Like I said in the last 3 years Cooper has been in a public restroom 3 times with me. Twice because Sawyer had to go. I actually pleaded with my then 2 year old to hold his pee so we didn’t have to bring Cooper in. So messed up.

The third was because Cooper pooped so terribly he had to be changed immediately. I laid him down on a sweatshirt on the ground of a grocery store. It was absolutely disgusting. You try telling a sensory seeking child they can’t touch the floor, lick the floor or put things in their mouth. It’s just not happening.

So this picture really jazzed me up.

First, let me say it’s not a competition of who has it harder. I know nothing of transgender and I won’t claim too. I also know nothing of having a handicapped child in a wheelchair. I can’t imagine and I send all of my hugs and strength to the parents and caregivers that work with physically handicapped kiddos. I am very blessed that Cooper is active and physical.

But in saying that, I do know what it’s like to have a 5 year old, almost 6 year old in a diaper. I know what it’s like to worry about changing him when we are out in public. And what no one tells you or talks about is that a five year old child has adult poop. It stinks and it’s extremely messy. It’s 30 wipes every time. It’s gagging and scrubbing your hands. It’s Cooper’s brother telling me that his brother stinks. It’s a child that refuses to be changed standing up. At least once a week I cry over Cooper’s pooping issues.

We parents need a private place to change our kids diapers with dignity, privacy, and cleanliness…not on a dirty bathroom floor. We need to drive awareness. We need to be able to leave our houses and go out into public. Like I said, this picture makes me so sad. We need to start talking about it.