Stop Acting Like Autism is a Death Sentence

I’ve been writing publicly about autism for five years now. Meaning, I’ve opened myself up to the world to educate and share our journey. And with that level of vulnerability comes support and scrutiny.

At this point, there isn’t much that I haven’t heard.

My son has been called ugly. I’ve been called fat. I’ve been told I should’ve aborted Cooper. He’s been called a retard. Dumb. Ugly. A mistake. A freak. He’s had death threats. Hell, so have I.

I’ve been told that Cooper and I are stealing Medicaid dollars from other people.

I’ve been told that I am a terrible mother because I work.

I’ve been told I’m exploiting my son. I’ve been told I’m making him autistic. I’ve been told to shut up.

I’ve been told he can be cured by essential oils, by removing gluten, and by giving him medication.

I’ve been told that vaccinations are evil and are stealing our children from us. I’ve been told western traditional medicine and doctors are monsters.

On the other hand, I’ve been supported. I’ve been praised. I’ve been thanked. I’ve read countless comments, messages, emails and letters. I’ve built a community. I’ve given other parents an outlet to share their stories.

I’ve Heard it All

Like I said, very little shocks me these days. I rarely give a second glance to an insult. I typically delete and block. I don’t need to be someone’s punching bag.

If I feel particularly combative I’ll tell them God bless. Or I’ll ask them about their autistic child. A little secret…the most judgemental people don’t have an autistic child. And the meaner the comment is…the less it is about me and the more it is about them.

Those two nuggets of wisdom took years to learn.

Or, after a particularly low insult, I ask them to write for me. That’s my personal favorite. Oddly enough, the people that hide behind their computers and insult me, rarely take me up on the offer to share their wisdom with the world.

Today though, I caught wind of a little fight on one of my pages. Yesterday, I shared a beautiful picture of Cooper as a baby. A bit of the caption read like this:

‘Sometimes, like today, looking back makes me sad. We always knew but…we didn’t REALLY know until it was said out loud by the psychologist. Once she said it…it was real. No more pretending. I look at pictures like this one and my heart breaks. We had no idea what was ahead of us. Autism was just a word. A word that happens to other people’s children.

And sometimes, I look at photos like this one, and I’m happy there was a time before autism. Before the pressure. The unknown. The fear. The worry. The guilt. The panic. The behaviors, rigidity, screaming, and anxiety. A time before the hard stuff.’

Per the usual, I received comments and pictures from other parents saying they felt the same way. They agreed that looking back at ‘before autism’ can be so hard.

And then I saw an angry face. Also, not new. People dislike me all the time. I am not everyone’s cup of tea. I often overshare. I talk about grief. I talk about all sides of severe autism. And that isn’t appreciated by some.

But I will tell you, I always hold my breath as I read negative comments. I never know what to expect. It could be anything.

This one read, ‘STOP ACTING LIKE AUTISM IS A DEATH SENTENCE. It’s not. Just get over it.’

I was a bit shocked. A bit angry. A bit annoyed. No one ‘just gets over autism.’ But mostly, the comment just got me thinking. Of course I sent her my usual ‘God bless.’

Let’s get one thing straight people. I will never compare autism to a death sentence. Never. Never ever. Because it’s not. Nor will I ever act like I know what it feels like to lose a child. Because again, I don’t. And I pray that I never do.

He is my Life

I have my beautiful son to hold, kiss, hug, snuggle and love. I can hear his sounds and his giggles. He is with me. He is growing. He living. He is my life. And I wouldn’t change it for the world.

Cooper is my joy.

But, and there is always a but, throughout the years, I’ve grieved many parts of my son’s childhood and future. And maybe, just maybe, at times, it’s felt like a loss.

Cooper is seven and I have had to say goodbye to every single ‘normal’ part of childhood and life.

My son doesn’t talk. He doesn’t go to school. He doesn’t play. He doesn’t interact with children. He doesn’t play a sport or ride a bike. He doesn’t read. He doesn’t write. We rarely leave our house. We don’t go to parades or movies or restaurants.

Instead, he wanders throughout our house wearing a swimsuit, watching a Kindle and carrying an armful of treasures. I spend my days trying to understand the mystery of autism. I make phone calls, research, fill out evaluations, fight with the county and insurance companies. We visit doctors offices. We go to therapy. I hold my breath praying to God he is healthy, not in pain and that another regression isn’t looming.

Autism dictates every single decision we make. Our life surrounds it. These are all facts.

I ask you this though. Tell me how a loving parent can miss every single milestone and not grieve it as a loss. You don’t. Each one had it’s own sting and did its own damage.

Grief

I have grieved the perfect family of four. And no, I don’t mean the stereotypical, happy, perfect family. Because that’s not real. But, as a mom who has a family divided by autism, let me tell you…I grieve my family. I grieve describing Cooper because he is never with us. I grieve so much of what we should be doing together. I grieve every time we leave Cooper home. I grieve every time I tell a stranger that I actually have two children. I grieve Sawyer saying…’I am so glad Cooper didn’t come mama. Now you can play with me.’

I’ve grieved the relationship my boys should have. I’ve grieved the words he’s never said to me. I’ve grieved the questions and conversations we’ve never had. I’ve grieved play dates, public education, baseball games, teaching him to ride a bike and catch his first fish. And each grief has felt like a loss.

Because it’s not like I hoped for an athlete and got an artist. It’s different than that.

I can’t change our path. I can’t lessen my pain. I just have to work through it. I have to focus on Cooper and what we do have. A very much alive beautiful little boy. I focus on making him happy. Teaching him. Hoping for him. Giving him his best life possible. And celebrating every single victory that he has.

So, friend who commented, nope, autism is not a death sentence. But the grief that parents feel is very real. And it shouldn’t be lessened or shamed. Not on my page anyways.

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.