A Day Without Autism

I’ve been writing about our autism journey for nearly four years now. Which blows my mind. Cooper was diagnosed at age three. Some days I can’t believe we’ve been on the autism path for that long. And then some days it feels like an actual life time.

Writing has always been my escape. When no one in my real life understood what I was going through I would write it out. And immediately feel better. Writing was a way to connect with other parents that were on my same path. Writing helped with the isolation. Writing helped with the sadness. And writing helped me to celebrate my son’s victories.

Why I Write About Autism

I’ve noticed throughout the years that my posts ebb and flow. Like a roller coaster almost. For a period of time Cooper will be thriving. He will be learning and improving. And my writing is positive and motivational. And then boom. He will halt and regress. And just like that my writing will take a downward turn. I will write about all the emotions that go into raising an autistic child. And let me be clear, I don’t write for sympathy. I do it to share our reality. Sometimes I hit publish and sometimes I don’t.

I was reading through some old work today and stumbled across a post I wrote months ago called, ‘A Day Without Autism.‘ I wrote it right before we turned our world upside down by starting in-home ABA Therapy.

Cooper was regressing. Public education wasn’t working. He was starting down a path of aggression and I didn’t know how to stop it. He would kick and hit me every morning before school. My thighs and arms had permanent bruises. He started self injuring. He would turn on his brother in an instant. I felt like I was watching my son change right in front of my eyes.

He was severely constipated. He woke every single morning before 4 am. His meltdowns were severe. Our doors were triple locked. We couldn’t leave the house.

We See Their Struggles

We were in a low, low spot. I stayed up way to late one night and poured out the words below. As I’m reading it now, I almost forgot about how desperate I was for a break. And for help. I never hit publish because I was scared of the backlash. I was scared of other parents on this journey shaming me for feeling overwhelmed and sad. Anyone that lives the autism journey knows that as parents we love our children more than humanly possible. There is no question about our love or devotion. But as their parents we also see how our kids struggle in a way that the rest of the world can’t. We live their disability right alongside them. And I think we even feel their pain more. We love them that much.

We see it every single day. We see the rigidity and anxiety. We see the medical issues that accompany autism. We see them struggling to understand the world. We see the bullying. So yes, we would take away their struggles and hardships in an instant. What if we could help them to understand the world? And make their lives easier? Would we do it? Damn right we would.

I no longer worry about the shaming. I don’t have time. And Cooper started improving the day we started ABA. We also saw huge improvements with supplements and and diet modifications. Here it is though. The post I never published about a day without autism.

The Post I Never Published: A Day Without Autism

Today was a terribly long day. I haven’t showered in five days. My hair is greasy. My t-shirt is on inside out and backwards. There are stains on it.  It’s 7:30 am…one hour until the bus comes. I’ve been awake since 3:37 am. We haven’t left the house in days. I am so tired I can hardly see straight. There isn’t enough coffee in the world to remove the haze that I am in. I fought with my autistic son over pretty much everything this morning. We fought over breakfast. And milk. And diapers. He rages at me so ferociously that I will look at his little angelic face and wonder how he can be so angry and an instant later be hugging me. I know people don’t believe me. They don’t understand autism. Hell, half the time I don’t understand it.

I’m really, really feeling the isolation lately. We can’t go anywhere for a multitude of reasons. The main one right now is Cooper rages so badly on his baby brother while driving that I can’t safely have them in the back seat together. So, we are always home. We used to be able to go for walks. Except now Cooper doesn’t fit into a stroller. And if he is squeezed into one he hits his brother and himself. Sigh.

I know I should probably shower. But I can’t. Not while Cooper is home and awake. I should splash some cold water on my face and wake up. I should get dressed. I should put some makeup on. I have to work today. I just can’t seem to find the energy. Lord I am tired.

The Days Are Long

My days start between 3 and 4 am every single day of the week. 365 days a year. We don’t sleep in on weekends or in the summer.  I have a little alarm clock that loves trains and wears footie pajamas. We haven’t missed a sunrise together since he was born. Here is a huge shout out to all the parents that live a whole day before the rest of the world wakes up. I get it. You keep looking at your phone wondering when you can start texting people for social interaction.

Just like me, Cooper wakes up happy every single day. Whether he is up at 3:30 or 4:40 he is smiling and full of energy. I am thankful for his sunny disposition. But……

At times putting him on the bus is very challenging. Actually, to be honest, every day it is getting a little bit harder. He kicks and screams. It takes bribing. Physically carrying him. Some days it is great. Some days I get a fat lip and bruised thighs. You just never know. Which is almost worse. I start worrying about it the second he wakes up. When the mornings are bad I am rattled all day long. I can’t shake it off. I worry that he is struggling because of the tough morning. I worry about when he gets bigger. I worry that I won’t be able to do it alone for much longer. I wonder if my thighs will ever not be bruised. Then I race to work.

By 8 pm my brain is fried. Cooper’s rigidity and needs are a lot. I carry that weight on my back. There is no break from it. Add in phone calls, emails, and appointments and it’s safe to say the days are long.

Bedtime

Thankfully, bedtime is easy. It always has been for Cooper. He is so physically exhausted that he practically puts himself to bed. I am blessed in that department. Every single night my sweet boy asks me to lay with him in bed. We put the Kindle away. We turn the light out. We turn the TV off. He will grab my hand and push me gently onto his bed.  He will pat my cheek and then point to his pillow and then he will point to me and tap his chest as to say, ‘mine.’

This is one of those moments friends. The super duper rare ones that almost never happens with Cooper’s autism. One of those moments where he is asking me to join his world.

If I am busy or stressed I will miss the invite. Or some days I’m oblivious to his nonverbal request because I just need five minutes of alone time without Thomas the Train blaring in my ear.  I’ll be rushing him into his jammies and I won’t notice that he needs me to lay with him until he grabs my face. He will look right into my eyes and smile.

And just like that I am snuggling my six year old in his bed. Sometimes I lay with him for just a few minutes before the stress of my to-do’s catch up with me. I’ll start making mental lists of the stuff I have to get done and I’ll whisper in Cooper’s ear that I have to go.

But there are some days where I’m not in a hurry. I let the exhaustion of the day catch up with me. I will smell his hair and rub my nose into his neck. I will think about how these moments are so rare. See, Cooper is never not moving. He never sits. He never rests. And I will squeeze him a little bit tighter and let my mind wander. I’ll whisper in his year, much like I do every night, that he is going to change the world. Typically, I’ll throw in a tickle and get a giggle out of him.

A Day Without Autism

And inevitably I start to think about a day without autism.

I am holding my baby in my arms. All 60 pounds of him. He is right here. I can feel him. I can smell him. And I let myself think about all of the moments that autism stole from me. From our family. First words, bike rides, t-ball games, play-dates and the tooth fairy. I immediately feel like a terrible mother for even secretly feeling this way. How do you separate the autism from the child? The guilt starts to wash over me.

I love my son more than I can put into words. He is my whole world. But what if, even just for a day, I could remove all the hard parts for him. His struggles. His anxiety. His rigidity. The parts that make him hit his head and hide in his closet. The parts that make him scream for hours because he can’t communicate his needs. The parts that have our family walking on eggshells from morning until night.

And just like that I let myself I jump right down the rabbit hole of a day without autism. Feet first. No fear. No guilt.

As I smell my babies hair and rub my nose in his neck I let my mind create a world without the rigidity of autism. Cooper pats my arm to squeeze him tighter. Which I gladly do. And I let my fantasy strip away his anxiety. His food aversions. His sleeping and pooping struggles. His desire to escape and run.

But I leave all the parts that make Cooper the most fantastic kid. His love of trains. His hugs. His giggle. His innocence. His joy. His sense of humor. His silliness. His love for me and his dad. His smile.

And while I hold my very real little boy in my arms I let myself think about the life we almost had.

I Would Be A Mother First

There would be no social workers. No case workers. No financial aid workers. We wouldn’t have thousands of dollars of medical debt on a credit card. There would be no therapists in our home. I wouldn’t always be teaching and modeling. I would instead be playing with my son. I could be a mother first instead of a teacher, doctor, therapist, and psychologist.

There would be no special education.  School would be a place of joy. Phone calls and emails from the school would be about cute things cooper did. Trips to the school would be for baseball games and choir concerts and not IEP Meetings. Artwork home would be his own. I wouldn’t have to worry all the day. I wouldn’t have to dread the phone ringing and seeing the schools number.

Beds wouldn’t be torn apart. I wouldn’t find toothbrushes hidden. Or ripped up Nerf bullets. Our doors wouldn’t be triple locked.

We would be able to leave the house. We would go to parks and movies and zoos. We would do all the things families do. Instead of worrying and dreading events we would get to go and enjoy ourselves. We would be able to eat at restaurants and watch parades as a family. We wouldn’t be divided. One parent with Sawyer and one parent home with Cooper.

We could go somewhere new and I wouldn’t have to sweep the place like and FBI agent. I wouldn’t have to know the exits. I wouldn’t have to find all the objects my seven year old could put in his mouth.

My whole entire world wouldn’t be about WiFi and devices. My boys would be able to play. They would have the kind of relationship brothers should have. I’d be able to leave the room for a second. I’d be able to take my eyes off of Cooper. I’d have light bulbs in my lamps and glass in my pictures frames.

I wouldn’t know about Medicaid. I wouldn’t know about the American Disabilities Act. I wouldn’t know about advocating.

I wouldn’t know about guardianship. I’d be saving for college instead of his lifelong care. I wouldn’t wonder if he will be able to go to my funeral. I wouldn’t agonize over questions like, ‘Will my son cognitively understand when I’m dead?’

I Would Ask Him A Million Questions

If we had a day without autism I would hold my son for the whole entire day. I would simply just sit with him. And we would look at each other. We would cook breakfast together and eat as a family. We would talk about his day. His likes. His dislikes. His joys. We would talk about his trains. About his friends. His birthday. About him being 6. His favorite shows. I would ask him a million questions. I would listen to his voice. I would record it. I would treasure every single word that comes out of his mouth. I’d ask him if he is happy and lonely and scared.

I’d sit with him and play a game. We would go for a walk. I would stop rushing and waiting for the meltdown that is always coming.

I would take a deep breath. I would feel the weight lifted from my shoulders. I would simply be his mother and he would be my son. No other labels would be necessary.

And just like that my little boy is asleep. I give him one more squeeze and whisper in his ear how much I love him. I tell him how he is the strongest kid I know and how I’m with him until the end.

See, having a child with a disability isn’t just about the kiddo. It’s about the family. And it’s for life.

 

 

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  • Colette Dingens Evangelista

    August 4, 2017 at 8:35 pm
    Reply

    Damn girl. You write like a fucking poet laureate beast. Beauty and chaos. May nothing but good things come to you and your family. […] Read MoreDamn girl. You write like a fucking poet laureate beast. Beauty and chaos. May nothing but good things come to you and your family. May your raw honesty blaze light and hope and love into the population whose lives you touch. Read Less

  • Astrid Bell

    August 4, 2017 at 9:51 pm
    Reply

    I don't think anyone understands how easy their lives are. I love my child, but the challenges keep getting larger at age 12. […] Read MoreI don't think anyone understands how easy their lives are. I love my child, but the challenges keep getting larger at age 12. For some reason, autism becomes more shameful. the fortunate thing is that over time , even though very few, you learn who your friends are. Thank you for your blog. I was feeling alone today. = ) Read Less

  • Katey C.

    August 5, 2017 at 12:06 am
    Reply

    Hugs to you Momma. So many hugs. I have three little ones. Our circumstances are not the same, but I learn so much from reading […] Read MoreHugs to you Momma. So many hugs. I have three little ones. Our circumstances are not the same, but I learn so much from reading your posts. You teach me about another level of love that a mom has for her child. It's beautiful and heart wrenching and I just wanted to say thank you- so sincerely- for sharing your world with other moms, with all kids of varying circumstances and from all walks of life. Being a mom is a million time harder than I ever imagined, and I'm so grateful for people like you who reach out and connect us with one another. Sending you love and peace and hope. May yours and Cooper's next up-swing be just around the corner :) xx Read Less

  • Allie A

    August 9, 2017 at 12:56 pm
    Reply

    Wow, this entry really made me sob. Big hugs to you.

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About Me
About Me

Hi, I'm Kate. I am the mother to a little boy with severe, nonverbal Autism. This is a glimpse into our heartwarming, sad, scary, funny, loving and secret world. Check out my video tab to hear me ramble about Autism.

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