Tag Archives: listening

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.

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Can You See Me? I’m Here In The Darkness. (Part 2)

23 Feb

As I continued my experience randomly selecting food and taking small fearful bites (you never know when they would sneak in another olive, or infinitely worse, a bit of cilantro) I start listening to the conversations around me. I turn my head to the left and listen.

Perk. No one could see that I was eavesdropping.

They were talking about what brought them here tonight. Most people had just heard about it and thought it would be an interesting thing to try. I speak up and say that I have a blind daughter. They start asking me questions about her and want to know what she has to say about blindness. I explain that Oli has autism and doesn’t talk. A woman across from me and to my left starts to tell me about her friends daughter who is also autistic. We are interrupted by a loud voice behind me.

“Seth’s wife? Seth’s wife?”

“I’m here!” I call out.

Were you wondering where my husband was during my first moments in the café?

Where else?

In the bathroom. Minutes before we followed the waitress behind the curtain and stumbled into the darkness, Seth decides he has to pee.

I guess the line was really long because he hadn’t returned when it was our turn to be seated. I knew he would find me eventually.

I grab his hand, well. . .I try to grab his hand, but really just keep grabbing our waitress Faith’s hand.

“Nope. Your still holding onto Faith.” She tells me as she tries to guide me to Seth’s hand.

“See? Woman hand.” I touch her smooth hand. “Man hand” She laughs as I finally grasp hold of Seth.

“Ahhh. . .very important detail. Smooth soft girlie hands and rough man hands.” I say giggling about my complete ignorance.

I really need to concentrate and let me other senses take over. I am focusing on the blackness with my eyes. Opening them wide and trying to discern any tiny shape, form or different shade of darkness. There was nothing and I am disoriented.

After Seth is seated I turn back to my left and try to speak to the woman about her friends daughter again.

“So your friend’s daughter has autism?” I speak in the direction I had before.

There is no reply.

My voice seems small and gets lost amidst the other conversations. I have no other way to get her attention because I cannot make eye contact with her and don’t know where she is to touch her arm. I don’t even know her name.

All of a sudden I feel very alone and lost. I feel unseen and unnoticed.

Is this what it is like for Oli? She can’t see me and she can’t talk to me.

Does this sweet little girl feel unnoticed, unheard, lost and afraid in her world of darkness?

I slump in my chair as my heart begins to feel unbearably heavy. I sit back as those startling realizations hit me and think about that moment.

I think about how I am feeling at that exact point in time and try to burn it into my brain. I don’t want to forget it because I am learning. I am finally learning a very small part about what it is really like living in Oli’s world.

(Check back later. I have more to tell you!)

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