Sometimes it Really Hits Me

Autism has been a part of my life for 20 years.

I have 2 sons with Autism. I feel like I know it well. I’m comfortable now.

I’m in a groove. There were hard, hard days for many years.

Sleepless nights (literally); stress, grief, and confusion as to how to navigate this new life.

I remember one day in particular during Spring Break….my kids were home from school, and I was literally loosing my mind.

My son was in rare form. I couldn’t leave him alone for 2 seconds.

After an entire week of this, I had arranged to drop him off at a respite center for the day, something I never did, but I was desperate.

We get there and he refuses to get out of the car.

He’s screaming, my other little kids were screaming, and I’m having a complete and utter break down in the parking lot.

The woman running the respite center saw the scene from the window, and came out to help. She took pity on me and sent someone to my home to help me for the afternoon since no one could get my child to leave the car.

There were days when I was sure we’d get kicked off airplanes.  Days when I wasn’t sure how I was going to survive.

I rarely have days like that anymore.

My younger son with Autism is nearly 12. He is relatively calm.

He is relatively compliant. He is able to have decent conversations now.

We can go to movies. We go to Disneyland.

We can make it through church services. Its probably been a year since he didn’t exit a public bathroom fully clothed.

Life is good! He is funny. He gives great kisses, and he is loved by everyone who knows him.

We have settled in, and are happy.

I read posts on this site about the struggles and stresses people are living through, and I sympathize SO much.

I feel for you all who are struggling in any way. I’ve been there. I’ve lived it. I cry for you.

At the same time, I’ve thought a lot about how we’ve completed that stage for the most part.

Yes, there are times of struggle, but my life with Autism is pretty darn easy….all things considering.

I’m happy. He’s happy. I can breathe.

And then just when I’m feeling the most comfortable and happy….and have a moment and I am reminded that I am NOT ok with this as much as I say I am.

I took my son to go on a tour of the local middle school.

He’s starting 7th grade next year, and he’s having several special transition tours to help get him adjusted to the big school change coming.

He was so excited. We saw the cafeteria, library, classrooms, etc. His eyes were big and he tells me ‘This school is AMAZING!’

I was feeling so much better after all my nervous worries over this big change.

Then we go and meet his future teachers and classroom.

He will be in the ‘significant needs’ classroom; a small class with the other 6 kids (out of school of 800) that can’t be in a general ed classroom all day.

Yes, he’ll attend general ed classes on occasion (hopefully), but the vast majority of his day will be spent in this room.

A room where my 12 year old is still reading at a 2nd grade level.

A room where teenagers choose to play with preschool toys in their free time.

A room where wheelchairs, screaming and non-verbal communication is the norm. It’s not new.

It’s the same set up as elementary school, and I agree whole-heartedly that this is where he belongs. But, somehow it really hit me this time.

As we’re touring the school and I see all the other 7th and 8th graders bustling about the school – going to and from classes; talking with friends in the library; working on projects together in the tech lab.

It really hit me.

That will never be my kid. He’s different.

He won’t go out for sports. He won’t be going to the Prom. He won’t be graduating high school (not a real diploma at least).

I knew all this of course already, but some times it REALLY hits me.

And, I sat there staring around his wonderful future classroom, and chatting with his dedicated teachers, and all the other truly special kids in there….and it was all I could do to force the tears back.

I love my son. I love him not just despite…but because of his Autism.

But after all these years, I’m still surprised when I realize that I’m not done grieving. Will I ever be?

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers who choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.