I Can’t Expect You to Understand Autism

I am always in situations where I am around people I don’t know. Or at least don’t know well. I work outside my home. I am a member of a few boards. Involved in clubs. I try to have a social life when I can. My five year old and I attend church. He is also getting more involved in events every day. Soccer, groups, play dates.

When I am in many of these public situations my mind will wander to Cooper. It always does. I tend to observe a room when I first arrive. I assume it’s a mom thing but it’s times a hundred because I have a special needs son. I can read a room in seconds. I know where the exits are. I note the type of people. Elderly? Babies? I identify the dangers. I swear I am better then a team of Police Officers.

I do this because I can’t turn if off. I do this because if my autistic son is outside of our home, I am holding my breath waiting for something bad to happen.

It has before. It most likely will again. And I’ve learned as my son has grown out of his cute toddler stage, that I can’t expect people to understand autism.

My son Cooper is seven and is highly behavioral. He is a runner. A pusher. I wish I could call him a gentle giant. But I can’t quite yet. He is clumsy. He doesn’t know how to interact with children or most adults. He runs with his head down. He doesn’t stop moving. He bumps into almost everything. Mostly because he’s not paying attention. He’s loud and wild. He’s rammy. He throws. He yells.

I know a lot of you who read my blog don’t believe me sometimes. I know this because when people meet Cooper in real life they are surprised by how ‘active’ he really is. People think I exaggerate. I don’t.

They see that cute, adorable face and my positive spin and think he couldn’t possibly be that severe.

When he gets anxious, which is often, he acts even more dangerously. It’s like all 7 years of therapy go out the window when we are outside of our home. ‘Stop’ takes on no meaning. ‘Calm hands’ has the opposite effect.

My son is misunderstood. His type of autism is misunderstood.

My son acts this way because he can’t communicate. Many of his behaviors stem from the fact that the world doesn’t make sense to him. But, I can’t expect you to understand that. I can’t because most people don’t understand autism. They don’t live it. They don’t see it. They think all autism is what they see on television in shows like The Good Doctor and A-Typical.

They don’t understand that it’s a spectrum and that every child is different.

Mom and Cooper at Thomas the Train

When under pressure, and I want to note that what you consider to be under pressure differs WILDLY from what he considers to be pressure, he will act very bizarre. Cooper doesn’t know how to act in any setting outside of our home. The second we enter a store or a house that is not our own I see the change in my son. He gets this look in his eye.

And it makes me more nervous that I can put into words.

A good example is a park. Instead of running towards the swings and slides, he runs away. Anything in his wake is at risk. He won’t stop for cars or people. Or, if we are in a room full of toys, he doesn’t see possibilities and fun, he sees something else. He runs. He knocks things over. He gets very loud. I can say for certain he won’t sit down and play.

He’s been known to get so confused by his surroundings that his body seems to do its own thing. He will lay down. Kick and flail. He has kicked children before.

At age 2 and 3, this was still okay. At age 7 and 70 pounds it’s a whole different ball game.

Even though he appears to be in distress, I want you to know that my son truly, undeniably, wants to be at these places. We would NEVER, and I mean NEVER, force him to go anyplace. He wants to be near kids. He wants to meet Daniel Tiger or Elmo or go swimming.

But, there is an incredibly fine line between extreme joy and anxiety in my son. And as his mom, I have to walk the line of giving him joy and keeping him, and his surroundings, safe.

And that’s a hard line to walk.

The boys at Wisconsin Dells

I want you to know that he doesn’t understand why running into a kid or knocking over a chair is wrong. And that confuses people the most. I’m not justifying. And yes I bend down and talk to him about it.  And I will apologize to you every time. And we will most likely leave. Which is worse than staying because he doesn’t understand.

My heart breaks when this happens. I will do anything to avoid my son being labeled the dangerous kid.

I often play the scenarios out in my head while I look at people. And I wonder if they would understand. I do this a lot.

I’ll look at a mom or a dad with their cute little toddler and I’ll wonder what would happen if their child came into my little tsunami’s wake.

How would they react? How would you react? I want you to think about that for a second. If a bigger child bumped your child would you think he was a monster? Would you yell at him? Would you be angry at him? With me?

Would you go all mama bear on me?

Would you accept me saying that he is autistic? That he is developmentally delayed. That in so many areas he is still a baby. That he truly doesn’t understand.

Everyone says they will. I want you to know that. Outright, if asked, every person on this planet will say they would be kind and accepting of my son’s disabilities.

I know that’s not true though. Not always. Because I’ve seen it. I want you to know I am a very rational person. I understand safety more than the average person. I understand social norms. Simply put, I understand.

And I understand that I can’t expect you to understand. Unless you live it, you probably wouldn’t.

I have learned to be one step ahead, prepare, smile, run, be ready and hope and pray nothing bad happens.

And this my friends, is why we often stay home.

I used to think the world needed to change for Cooper. For years I was on my autism inclusion soapbox. I thought, we can go anywhere. My son can do everything. We just need a little more help than most. And for MOST children that is true. But age 7 has been a big turning point for my kiddo. He’s so big now. He’s hard to control. He has no understanding of safety. The worries and fear and his anxiety are just too high.

And…I can’t expect you to understand why he does the things he does. Because, honestly, I don’t know if I fully understand.

You see a completely average looking boy. The way he’s acting doesn’t make any sense. I get it.

I can’t expect you to understand that if he knocks over a chair, he’s doing it because he can’t communicate with you. And he feels like no one is listening to him. He wants your attention.

I can’t expect you to understand that he can’t shut his body off. It’s always moving. And lord we’ve tried. Seven years of therapy and it’s still hard.

I can’t expect you to understand that my son would never mean to hurt your child. He doesn’t know what he is doing. You see someone acting erratically and your child has been pushed. I understand. I can’t ask you not to be mad. I am a mama bear too.

I can’t expect you to understand that his brain is wired differently.

I can’t expect you to understand that he screams,  because he can’t communicate. He touches what he needs to understand.

I can’t expect you to understand his autism.

All I can do is pray that you will be kind. And empathetic. That you will listen to me. That you will try to open your mind and heart. That you will look past the running and screaming and see a mom, drenched in sweat, who is trying so hard to be one step ahead of him and hold it together.

Parents like me live in fear. That’s the honest to God truth.

This is not easy stuff. These are not easy questions or situations. And I find myself in them all the time.

I could also say if you got to know him you would understand he has the most beautiful soul of anyone I have ever met.

But, he doesn’t know how to act in public. And his dad and I and a whole team of therapists are working on it every single day.

I can’t expect you to understand my son’s autism. That’s a lot to ask. But I can pray to God that if you come in contact with my him you will at least try.

Please.

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 and subscribe to our newsletter.

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  • Kylie

    March 11, 2018 at 8:30 pm
    Reply

    Firstly, I do not have a child with autism and stumbled across you blog by accident. I do however have a close cousin who […] Read MoreFirstly, I do not have a child with autism and stumbled across you blog by accident. I do however have a close cousin who has 2 non verbal teenage boys who we love dearly. They sound so much like Cooper in their behaviours and your blog has not only helped us in understanding the boys but also how to best support my cousin, so thank you from the bottom of my heart. I have a master 8 and he understands that the boys do act differently than other kids, but that's ok because they also love Thomas the Tank Engine like him :) Read Less

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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 my page!

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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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