Coping with Autism

I’m an optimist at heart.  I really am.

So, when I got the diagnosis of autism for my daughter  I remained hopeful.  She was two then.

I had actually known she had autism since she was 10 months.

At 10 months Antoinette never looked at me when I made a sound.  She never made eye contact.  She never cried.

Crying is a form of communication.  She  wasn’t communicating.

I watched my daughter and thought to myself “she’s a genius, that’s what this is.”  I told myself that daily.

Three years old rolled around and we still had no real language other than babbling…Infant, five month old babbling.

Yes, I would hear mama or dada, but it didn’t mean anything.

When people asked if she had words I would list the sounds I had heard.  There was however no actual meaning behind them.

My daughter has severe autism.

It’s more and more obvious as time goes on.

She’s 3 1/2 now and so far behind her peers that we can’t fake it anymore.  She’s not a baby no matter how many times I refer to her as such.

The world isn’t ready for her.  People stare.

Every time we go to a restaurant and I’m hand feeding her into her mouth and people stare my blood boils.

I’m always on alert.  I’m always ready.

It’s the opposite of who I am as a person.  I’m usually non confrontational, calm, placid.

Being an Autism mom is only scary, because I can’t live forever.  If I could then it wouldn’t be.

I am terrified of who gets her when I leave.  I hide it well, but it’s so debilitating when I think of it that I can’t actually ever let those thoughts in.

I just have to keep going every day.  I can’t ever give up.  I can’t die.

I remember thinking with my older three that motherhood was hard.  I only thought that, because I had never experienced true hardship in parenting.

This…THIS is so hard I almost can’t talk about it.

There is no magic age number she gets to when it’s easier.  People still try.

Parents will say “when she’s four it’s easier.”  These parents assume she’s going to somehow become four mentally when she turns 4.  I know better.

I can’t take my daughter to the grocery store or anywhere else alone.  I’m not strong enough physically.

And sometimes it’s harder than other times.  My neighbors across the street have a daughter one month younger than my daughter.

Sometimes when I sit on the front steps to take a moment to breathe I watch their daughter playing in the front yard and arguing about being the “winner” and I think about how robbed I feel.

And then a moment later I feel selfish for thinking like that because she’s perfect.  But then I go back there and think about how mean my neighbors can be to their kids and I wonder how they can have this and I have that.

And before you say God gives you what you can handle, please know there are a substantial number of Autistic children in foster homes.

I wouldn’t change her for the world, but I’m so scared I won’t be able to change the world for her.

I see pictures of myself from four years ago vs today and I see the aging.  I see what stress has done.

I don’t often speak of it, but Autism plays such a huge role in my life that I often feel like it’s eating me from the inside out.

My daughter has the kind of Autism that people don’t make inspirational videos about. It’s the kind that silences  us.  The painful kind.

There isn’t a place that we are welcomed.  We aren’t welcome anywhere.

We are only welcome in still pictures of her, where her beauty shines.

In pictures where her curly hair and deep brown eyes resemble neurotypical beauty standards.  We are only welcome in our own home.

My daughter is beautiful, but also severely Autistic.  So much so, that a disabilities modeling agency, the top in the nation, was interested in Antoinette, but ultimately decided that she was “too autistic” to model.

Too autistic…for a modeling agency that specializes in disabilities…let that sink in.

The world is scary in a way it never was.

I don’t think it will ever be any different.

The only thing I can ask of the world is to accept her.  Please accept her.

Please try to understand her.  Please love her when I’m gone.

Written by, Ashley Stone

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.

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