Dropping My Best Fake Smile

Some days, most days actually, I am happy. Like, really happy.

Why would I not be? I am blessed beyond belief.

I have three amazing kids and a wonderful husband. My family is healthy. So am I.

We do not lack for anything. I recognize our blessings. And I am thankful for them.

But my life, by most people’s standards, is hard. It’s loud. It’s chaotic.

It may appear as if I am drowning at times. Or like I’m barely keeping my head above water.

It also may appear that my decisions are driven by autism. Or that our whole families are.

But I like to think I have a good handle on it.

I embrace the chaos and hope for peace. And I do it with a smile on my face. That’s the truth.

I also believe laughter and finding the positives are what gets us through hard times. I know that’s not always possible. Trust me.

I know there are parents reading this that were up all night. That are being hit. That are probably cleaning up smeared feces at this very moment.

Trust me. I’ve been there.

I’m just saying that when I look at the overall themes of my life, I choose laughter and positivity to get me through.

If I was to dwell on the sadness like the fact that my son has never spoke a word. Or made a friend. Then I wouldn’t be able to live my life doing what’s best for my son.

And that’s what matters. Him. He matters.

I don’t dwell. I’m not saint. I’m not perfect. But, I don’t dwell.

But, in saying all that, I’m also real. And we have hard days too.

Days where autistic behaviors, rigidity and anxiety can consume our family. I like to break them down as different phases of our life.

Jamie and I will reference something from a year ago and say…’oh yes, that happened during the eloping phase.’

And when I look back at them I like to note that our family hunkered down. We got through each one with a humor, a little grace, and a whole lot of resilience.

There was the lights off phase. The curtains closed phase. The everything in the bathtub phase. The family photo phase. The bed stripping phase. The putting everything in the garbage phase.

The hoarding phase. The ‘lines’ phase.

Each one impacted our family in a different way. And if you were a fly on the wall you’d see we approached each one with smiles and humor.

Until, they got to be too much. Which they always do.

And then we’d decide how we were going to get through. Jamie and I would make the decision together.

Maybe it was extinction. Maybe it was ignoring. Maybe it was putting locks on a door. Whatever it was. We did it.

We made it through.

But there are days when Cooper and I or Dad and Sawyer are pushed to our limits. Where it’s all too much.

And on these days you will see my best fake smile.

It happens when…

I’m explaining autism again and again to doctors, teachers, and well-meaning people.

I step over lines and lines or hoards of items in our home for the millionth time. We are talking piles and hundreds of items. When storage boxes and piles of mail are ripped apart. And every surface of the floor is covered with things.

Someone asks me, ‘so…ah…what are the professionals saying? Is he ever going to talk?’

My house is destroyed. Photos are ripped. Frames are broken. Lamps are knocked over.

I have to unlock my bedroom door with a key or lock every item in my bathroom in a cupboard. And if I forget for one second, one blasted second, our stuff is destroyed.

I’m feeling the isolation at a family event or public outing. I’ll be chasing him around the perimiter and I’ll feel like I’m a stranger looking in.

Someone tells me they know how to cure autism. The constant influx of cures. Never ending. The secrets. The judgement. The ‘I know more than you.’

Someone tells me I’m raising my son wrong. I should be doing this and that.

Through almost all of it, I keep that fake smile plastered on my face. It’s not worth scolding or fighting. I have my own battles to deal with.

So, I keep smiling. I keep educating. I keep moving forward.

But everyone has their limits.

And some days, I drop the fake smile. I drop the ‘all is fine’ attitude.

It’s typically days when I read things on this page like…’Your son is better off dead than with a mother like you.’ Or ‘I hope he commits suicide so you know how selfish your words are.’

Or, when we leave a public outing gone so terribly wrong that I don’t know how we are going to continue on as he gets bigger.

Or, when I see that the world isn’t ready for severe autism and my child isn’t ready for the world. I will realize, once again, like a slap in the face, my child is so very different. And I can’t fix it. I can’t make it go away.

Or, when my son is under extreme stress and rolling on the ground. Screaming. Head hitting. And I know I need to keep him safe and others around him safe. I know I need to remove him from the situation. I know people are watching. And I don’t know how to get him out of the situation.

Or, when I’m sitting on the floor with him during a meltdown. Bear hugging him. Protecting his head. Sometimes at the expense of my own face and chest.

Or, when it hits me out of the blue, that one day I am going to die and he will be alone. This will not happen just once over either friends. This will hit you continuously over and over again. You will read a story in the news of a vulnerable adult being sexualy abused and you will see your child’s face in the photo on the tv.

You will stand in the shower or lie in your bed and wonder how can you can guarantee your child’s safety for the rest of his life.

There are moments when the fake smile is just gone.

These are the moments of isolation that very few people can understand.

And I take a good long look at my life.

And I say out loud. This is not okay. This is not fine right now.

Some day, maybe tomorrow, it will be better, but right now, it’s not okay.

I don’t know the future. I don’t know how this is going to turn out. I don’t know anything about the future actually.

I take comfort in knowing that at the center, Cooper is getting the best care. He is loved. He is cared for.

He has parents that refuse to give up. Parents that choose to smile and find the joy in the struggle.

And tomorrow, or the next day, or maybe next month, this will be okay again. My real smile will return.

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