Tag Archives: words

What’s wrong with her?

8 Mar

I posted on Facebook earlier tonight that we met a very nice young lady while eating dinner at Chili’s. She wanted to come over and say hi to Oli. While it was very nice of her to come up and ask questions about Oli (I’d much rather have someone ask rather than gawk) she did say something that I just can’t easily forget.

The more that I’ve thought about it tonight, the more it’s eating away at me. And while I don’t talk about things very easily, I write about them very easily so here we go…

The first words out of her mouth after “Hi. Can I ask you a question?” were “What’s wrong with her?”

Oh my god. Would you like me to serve you my heart on a plate lady? Since you know. You just ripped it out of my chest and all.

What’s wrong with her?!!

Nothing! Nothing is wrong with her! Everything is right with her!

What is wrong with your son? Why was he screaming at the top of his lungs the entire meal?

No. No. Rest assured. I did not say any of those things.

Why?

Because I’m nice. Because I don’t like to hurt people’s feelings. Because often times I let myself be hurt rather than risk hurting someone else.

I know. Who does that?

I also didn’t say any of those things because this woman really did have honest, pure intentions. She didn’t mean to hurt my feelings. Or my husband’s feelings. Or my children’s feelings.

Or more importantly…

Oli’s feelings.

She said that she had a cousin who was autistic and thought that Oli probably was too. She was a very sweet, nice woman and even though she asked that awful question, I’m still glad that she said hi. I’m still glad that she wanted to say hi to Oli and touch her.

I’m really not trying to throw this woman under the bus here. Even though it seems like she’s sitting under the tires as we speak.

I’m just trying to make a point about the words she used.

Even though words can’t be seen, they can be felt the most. They can cut the deepest and leave scars on the heart.

This was not the first time, nor will it be the last time, that I hear painful words.

Given the choice between someone staring at her or asking what’s wrong with her… I’m not sure which is worse. Or which is better.

For Oli, the stares are better because she can’t see it anyway so it doesn’t matter.

Hearing someone ask what’s wrong with you has to be devastating. Especially since it’s not like she can turn to me and say “Well mommy. What IS wrong with me?” She can’t express to anyone how those words make her feel.

And then there’s my other children.

I can’t even begin to tell you what it is like to have to sit across the table from your sister and hear someone ask what’s wrong with her, like you’re not even sitting there. Like you don’t have to deal with this kind of stuff every single day.

Are the stares better for my other children? I can’t answer that. I have no idea.

I like it when people approach me. I like to talk about Oli. I’m not sure what the right phrasing would be in circumstances like this.

Perhaps just saying hi. Saying something like “Hi. Did you have a nice dinner? I just wanted to introduce myself and tell you that I have an autistic cousin. His name is ____.”

That way I then have the opportunity to say “Hi! You know my daughter here has autism too. She’s also blind.”

Or maybe I should just start being more proactive and if someone comes up and says “Hi. Can I ask you a question?” I’ll just interject with SHE’S BLIND AND HAS AUTISM. SHE ALSO HAS A GENE DELETION AND IS NON VERBAL, HAS SEIZURES, IS DEVELOPMENTALLY DELAYED, HAD SURGERY WHEN SHE WAS 7 MONTHS OLD BECAUSE OF SEVERE REFLUX. SHE’S HAD A FEW OTHER SURGERIES TOO. HERE LET ME START AT THE BEGINING. PULL UP A CHAIR. SHE WAS BORN WITH MICROPHTHALMIA! Excuse me a second, WAITER! WAITER! Hi. Can you give me piece of paper and a pen? I need this lady to take notes. I fear I’m losing her here.”

Ok well. You see where I can go. Ya know. Issues and all. I tend to talk too much and give too much information so that might not be the best solution. (I wouldn’t ever say any of those things in front of Oli of course, but you get the point. Had to put that in there for the serious Sally’s who might feel the need to comment about it.)

I think the first option is probably the best. People may or may not even have a relatable topic to approach me with. You can always just say “Hi. What is your daughter’s name?” Then inevitably I WILL tell you about her.

Come on guys.

I’m like a leaky faucet when it comes to talking about Oli. You know this about me.

I’m an over-sharer. Can’t help it. It’s in my genes. I come from a long line of over-sharers.

I just don’t want Oli or Kekoa or Ginger or Thalia or myself to have to hear the words what’s wrong with her again. Especially not from someone who has a kind heart and good intentions because then I just feel REALLY bad.

If it came out of some jerks mouth, well then… that’s easy.

I just want people to think about the things that they say, when they don’t stop to think about who might be listening.

There could be little brothers and sisters listening.

The child that you’re talking about could be listening.

Even a child who you might think can’t understand you? Can probably understand you.

My Oli can understand you.

Until I meet a doctor that can tell me with 100% certainty that Oli absolutely, positively CANNOT understand any kind of language…

I will always believe that she can. Even though she cannot speak.

Because that’s my job. That is MY job as her mom. I am supposed to advocate for her and protect her and ensure that she knows that she is entitled to the exact same rights as every other human being on this planet.

She deserves not to have people speak about her like she isn’t even there.

We don’t do that to people.

My daughter is people.

And there is NOTHING wrong with her.

Advertisements

She finally called me mom.

23 Jul

Yesterday was the first day that Oli ever called me mom.
Today when she said it again someone else was here to validate for me that she actually said it. My husband heard her.

She is 6.

She called me mom.

Not mom-mom or ma-ma-ma. Not ommm or mmmmm or ahhhh or any of the other things that she has called me in the past.

Just mom.

I knew she could. I hoped she would.

I just didn’t know when?

As we were sitting on the chair this morning after breakfast she quieted her head shaking, tipped her head towards mine and said “Mom”. Then she smiled and leaned forward to give me a hug and pat me on the back. She hugged me tightly like “I know mommy. I know you’ve been waiting to hear that from me for a very long time. There you go. I said it.”

I was so shocked that I don’t even think I registered the fact that it was SUCH a big deal until after she left for school. Until after I came back upstairs and sat down with my coffee.

And then it hit me.

I finally heard the word that I have been waiting to hear since she was born. The word that I have dreamt of all of my children saying since the moment that I knew that I wanted to become a mother.

After 6 long years…I finally heard it from Oli.

If she has taught me anything it’s patience. If she has shown me anything it’s that we have to celebrate the tiniest accomplishments because for a child like her, the smallest things become the most memorable.

I remember each of her little moments like it happened yesterday. The pictures of those things are etched in my brain like a tiny portrait of the perfect day. I remember where we were sitting, what we were saying, who was in the room, and the big smile on her face once she realizes what she has done.

I’ll give you an example…

The second time she put two words together (the first time was at 2 years old before she stopped speaking) happened a few months ago. Kekoa, Ginger and I were playing a Lego board game. Kekoa was working on building a car out of red Legos with grey doors and black rubber wheels. Ginger was sitting to my left pulling out all of the tiny grey pieces, trying to annoy her brother. Oli was sitting with my mom eating applesauce. My mom asked her if she was all done eating. Oli tipped her head to the side and quietly said with the confidence of a super star “All done.”

Cue the big smile that graced her perfect lips and the huge yells of celebration and congratulations from the rest of us.

The itty bitty moments, in a regular house, on a regular day, mark the events of my lifetime.

THESE are the moments that I will remember when I grow older and reflect on the good times in my life.

I won’t remember when I bought my first car, when I moved into my first house, or what I wore on my first date.

I WILL remember when my Oli girl said mom for the first time.

I will remember when all of my kids did, but she works so much harder for these milestones. Months and months turn into years and years of therapy to achieve the things that other children seem to do so without effort.

And yet…that is almost exactly what she did today.

Somehow, working on it for all of these years instantly turned into a distant memory.

She said it so clearly, smoothly, and confidently that it just rolled off of her tongue like it had always been there.

Like she had been saying it all along.

I have many people joke with me and say things like “Just wait! Wait until she starts talking all of the time and then you’ll wish for the days that she didn’t.”

I laugh and say “Yeah” like I have some comprehension of what they’re talking about.

I don’t.

I can’t imagine a day that I wouldn’t want her to speak. She could speak to me all day, every day for the rest of her life and I honestly don’t think that I would ever get tired of hearing her sweet voice.

Can you imagine the day that she could have a conversation with me? Can you imagine a time when she could tell me what she wanted for dinner?

I can.

It gives me butterflies.

Nope.

I will never ever wish for these days when she can’t.

But, I know that she will be able to someday because she surprises me all of the time with her accomplishments.

It may have taken her 6 years to call me mom, but she said it!

She said it.

That’s all that matters.

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

The Formerly Hot Housewife

weight loss, healing, and new self discoveries

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Mom Rants and Comfy Pants

Ramblings From a Veteran Mom Who Hates Skinny Jeans. Ever Feel Like You're Swimming Upstream?

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.com/

Motherhood and Coastal Living

%d bloggers like this: