I’m Sorry You’re Missing This

I’m sitting here, basically in shock. Shock of the ignorance of people, wondering if it ever has an end. 

I’ll start by saying that I love my job (well, loved).

I thrive in that chaos. I love new and challenging things.

I feel like my life has been one giant challenge since August 17th, 2010 – the day my daughter was born.

It definitely started off pretty quickly. They had us stay in the hospital for two days after I gave birth to her.

The evening I brought her home, she just wouldn’t stop spitting up. Excessively.

She ended up having Colic.

Fast forward, then we have asthma.

Then she was allergic to soy.

Next she had to have surgery at three months to remove a cyst on her little head.

Her pediatrician realized her head wasn’t growing much, so sent us off to a specialist.

She had a CT Scan at 6 months. Microcephaly, but not to the point where she would need to surgically have spacers inserted into her skull (Thank God). 

Shortly after that, we started realizing she was physically behind. Then came the in home therapy. 

We’ve continued on this path, in my brain, since she was just two days old.

Jump ahead, she’s now 9 years old, nonverbal, autism. She’s been to two different geneticists, and they can’t pinpoint what she has, they just think it’s some kind of genetic syndrome on top of autism.

We do everything we can to help her, always have, always will.

Honestly she’s doing wonderful. 

We’ve had our fair share of rude comments, stares, etc. (haven’t we all?).

Today I had one that really caught me off guard…From someone that I not only considered a friend, but also my employer.

They’ve been BEGGING us to move to rural Montana.

Pulling out all the stops, offering everything they could to help her. Found a somewhat local private school specifically for kids with learning disabilities, which they offered to pay for. But this place was exactly what we feared for our daughter.

As if they’d let her slip through the cracks. Not push her enough. Not focus on her enough. Shorter weeks, no typical peer interaction.

So I declined the opportunity. 

Today, I received a call pushing me into making a decision of when we were moving. I let them know we still had things to figure out with our daughter.

She came first.

His exact response was, “I know you really want your child to be normal, but she just isn’t. I know you thought that school sounded ‘hippie dippy’, but it’s probably what’s best for her. I think you’re expecting too much from the public school system. Come on, she doesn’t even talk…”

At that point, I had to hang up. I was livid.

As if you’re suggesting not only that my child’s education is not as important, or that she isn’t as intelligent, just because she functions differently, and doesn’t “speak” in the typical sense.

She uses an iPad to talk. She perfectly understands everything you’re saying.

She tested her grade level (3rd) in Math last year. She would never say anything to hurt anyone, would never do anything to hurt anyone.

She’s an amazing big sister – she can take some abuse from her two year old brother and not complain or retaliate.

She cleans up after herself, even when the “typical” kids around her don’t. She’s an amazing swimmer, and completely self-taught. 

I had to take some time to calm down.

I’ve had people say things off-hand without thinking, and immediately apologize.

I’ve had strangers stare, make rude comments. When it’s someone you’re in close contact with, that’s spent time with your child, it just hits you differently.

Now I just feel sorry for that man.

That he’s so small-minded, my daughter seems less to him. This girl blows me away, day after day, year after year.

I’m sorry for anyone that isn’t around to see just what she’s capable of, because I guarantee it’s going to be amazing to see. 

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.