Tag Archives: disabilities

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.

It’s a beautiful life.

20 Nov

When Oli was born my son Kekoa was only 17 months old. He had not even spent a year and a half in this life. On this earth. He was so incredibly young that I was still getting to know his little personality. I was trying to figure out what kind of person, what kind of man, he would grow into.

What kind of grooves would this little boy fall into after having a sister born with significant disabilities?
Would he stay locked into hers? Would he be able to find his way out? Would he be able to tread his own path, defining his own grooves? Would he be able to define himself and to find his own identity or would he continually be forced to follow along behind her?

Would I force him to follow along behind her?

Would he be mad at ME? Would he resent ME for the events in his life that were about to take place?
Would he resent HER for being born the way that she was?

As I sat on the corner of the tub, bathing my 17 month old little boy, I asked myself all of those questions. I cried over all of the possible answers that lay before me.

I cried for the little boy that I had promised to do everything for. I cried over the fact that I had somehow unintentionally just made his life so much harder. I cried because I was not going to be able to fix this for him. I was not going to be able to make this easy.

When she was born I never even considered the possibility that her birth could be the best thing that would ever happen to my family. I couldn’t even dream of recognizing the positive outcomes because I was so drawn into the pity parties and the negativity. I couldn’t stop feeling sorry for myself long enough to see the beautiful forest from the trees. I was stuck in an outcropping of horribly ugly, brown, leafless, dark, gnarly, trees. I hated those stinking trees.

As life moved on…

As I moved on…

As the world moved on… I began wondering what kind of person this experience would mold my son into. I began realizing that we had a unique opportunity to view our daily life as a constant lesson to learn about humanity. The good and the bad.

I learned and began to teach my son how to respond rather than react to people and situations that might not always be positive. I learned and then taught my son compassion and understanding rather than anger and resentment.

We talked about WHY people sometimes respond the way that they do to Oli. We talked about HOW we could and should respond when people are mean. We talked about how most people just don’t see the world the way that we do. We talked about how people are generally good and that sometimes they just don’t understand and are curious, but might not know how to ask about her condition.

We talked about a lot of things. We still talk about a lot of things.

Kekoa is 8 years old now. We talk like we’ve always talked, but now I try to get him to tell me how he feels about things. I try to get him to tell me how it makes him feel if someone is mean to his sister, but it’s hard.

He’s only 8.

Mostly he just says that it makes him sad. He says that he wished people understood her better. He wishes that people knew that she was just like them, but unable to speak or to see. He says that he wishes that they would consider her feelings when they were mean and not treat her like she doesn’t understand.

I wish that too Kekoa…

So we talk about those feelings and the actions that we can take to make it better.

I never really know how much he understands when I try to help him work through these things. I never know what he does with these talks and these experiences when he walks out of my front door in the morning and heads off to school.

Until now.

The mom of one of the girls in Kekoa’s school emailed me this morning to tell me a story about my sweet boy.

She said that her daughter Rachel, was being picked on by some boys at recess earlier this week. Her daughter told her that Kekoa had stood by her, comforting her, and helped her to reach a teacher who could help. Rachel told her mother later “Kekoa knows how to treat girls because he has sisters.”

Because he has sisters.

Because he has Oli.

Really that’s what it comes down to.

He has learned such compassion, such respect, such infinite wisdom because he has Oli to teach him.

He has a sister who has never looked into his eyes, never spoken his name, never uttered a sentence, but has taught him to be an incredible human being.

She is teaching him how to become a wonderful man.

I can see how beautiful my trees are now.

I can look my son in the eyes and never feel remorse or sadness about the way our life has turned out.

I can look at him and see the amazing gift that Oli has given all of us.

She has made every single one of us into a better person and has allowed us to live a life that I never even would have imagined.

It’s a beautiful life.

Mother Moments

14 Jun

In the darkest of my fears, I sat alone, watching my little girl sleep. She was three days old. I felt like I had aged 50 years in those three short days. My life as I knew it, was over.

Before me slept an enormous responsibility. Before me slept one of the most vulnerable babies I had ever known. Before me slept my fear, my betrayal, my heartache…my love, my new life…my daughter.

From the moment that I found out that she was blind, I began to have “moments”. Moments are hallmark to all new mothers, but mine became drastically different from theirs. I began to have special needs mother moments.

In order for me to describe to you what those are, I have to tell you about my moments when my first chid was born. When he was born I had lots of those mommy moments where my heart filled with fear and anticipation. My brain would race full speed ahead to the future and I would begin to worry about what would happen to my baby boy.

Will he sit up before he’s 6 months old? Will he crawl by 9 months? Will he walk before he turns 1? Will he be potty trained by the time he’s 3? Will he learn his colors, numbers, and letters before kindergarten? Will he learn to read without difficulty? Will he get good grades, make friends, join the soccer team or play basketball? Will he be a responsible driver at 16? Will he take a girl to the prom? Will he graduate high school with honors? Will he go to college out of state?

All of my worries with my son were not questions of “what if he doesn’t___”. They were questions of will he do this now or later? Will he do this or that? I never feared that he wouldn’t walk or talk, be potty trained, learn the alphabet, read, write, drive, play sports, have girlfriends, graduate or go to college. I knew that he would do all of those things.

I simply worried the biggest worry since the invention of motherhood. My uneasiness festered within the age old question that millions of moms before me have tortured themselves with.

“Was I doing it right?”

After the birth of Oliana my moments of “Was I doing this right?” became overwhelmed by the heavier contemplation and an inward reflection of myself. I began to worry “Can I do this at all?”

In the beginning I had no one to lead me down a previously cultivated path, pointing out all of the obstacles. I had no mother who had been there before me who could assure me that I was doing this thing correctly.

When my son was born I simply picked up the phone and called my mother if I had a question. If she didn’t answer I called a friend. Now when I asked my mom questions about what to do with Oli or what the next step should be, she shrugged her shoulders and responded “I just don’t know.” My friends didn’t know either. If I tried to describe how I felt they all got a look in their eyes of total compassion, but complete incomprehension. They just didn’t understand.

I had been thrown into a tumultuous sea with a flimsy life raft that had a slow leak in it.

No one knew what I was supposed to do. No one could tell me how I was supposed to feel.

I began to ask myself some of those same questions that I asked myself with my son, but with a completely different context. Instead of wondering when she would do things, I began to wonder if she would EVER do them.

Will she learn to read, write, or spell her name? Will she ever be able to tie her shoes? Will she learn to walk down the street by herself? Will she one day be able to say the alphabet, be potty trained, or learn to use a fork and spoon by herself?

I didn’t know.

I started to have moments where I just could not stop myself from reliving what my life had been like before and what it was going to be like in the future. I began to daydream and create alternate realities where I would live the best and worst case scenarios.

The best of the best case scenario was one where upon a trip to an eye specialist, he would look into her non-existent eyes and tell me that there had been some kind of terrible mistake. She wasn’t blind at all.

Best case scenario was that she was only blind and cognitively and developmentally appropriate.

Worst case scenario involved a wheel chair, hospital bed, ventilators, and round the clock nurses. Life would creep slowly by with every minute spent worrying about her health for the rest of my life.

I ended up somewhere in the middle.

These “moments” now take on a whole different perspective as she gets older. Most often it happens when I see another little girl that is her age doing something normal. Something completely average and typical. Running through the park, laughing and playing, tying her shoes, eating an ice cream cone, hugging her mother, saying I love you.

These moments creep up on me and slam that heartache fiercely into my chest and steal the breath from my lips.

Those are the things that my little girl should be doing. I close my eyes and superimpose my girl’s face onto the other child’s body and imagine her living her life without blindness or delays. I imagine her running and playing. I see her looking into my eyes and feel her breath against my cheek as she whispers “I love you mommy.”

But when I open my eyes, those dreams disappear and vanish quietly. Thin, transparent, wisps of smoke that drift effortlessly through my fingers.

This was simply not how it was meant to be. She has a disability. She will ALWAYS have a disability. I cherish who she is and what she can do. I celebrate her numerous victories and feel gratitude towards what we have.

Sometimes…I still get sad. I’m human. I’m a mom.

Those are some of my moments today.

Can You See Me? I’m Here In The Darkness. (Part 4)

24 Feb

I spent the last two days attending the Blind Cafe and then the 2013 TX Deaf-Blind Symposium. Because of these two events my perception of Oli and some preconceived notions of her abilities/disabilities have completely been swung around and turned on their heads.

Where I have focused a lot of my time on what she cannot do because of or what she will not do because of .I am now seeing exactly what she is capable of and what is possible if I give her the chance. Although I really felt like I had given her lots of opportunities to explore the world and chances to communicate, after talking with blind adults and listening to experts in the field, now I feel like. . . Holy shit! I still have been regarding her learning opportunities in terms of what I see as limitations because of her disabilities.

While I was sitting in the darkness at the cafe a striking realization came to me when the wait staff started answering questions. I hate to say that when I first see a person with a disability, I see a disability. I’m not supposed to see that right? Because my daughter has a disability? But I still do. I don’t like that about me and I really try not to. I realized that one of the things that was so wonderful about listening to the blind adults speak in the cafe was. . . I didn’t see a disability. I couldn’t! And it was great. All I heard were intelligent, funny, nice people speaking. And then I started thinking about what an advantage they have over all of the rest of us. They honestly get to know people in a fast, genuine, real way bypassing all of the visual judgemental nonsense that sighted people have.

Always aspiring to be one of those “good” people who doesn’t judge people by what they look like, what they’re wearing, or how clean they are (although I’ll bet blind people notice that one even quicker than me) I suddenly started thinking of Oli as. . .lucky. I stopped viewing blindness as something I would never want for her and although I still wish she wasn’t, I started looking at all of the good things about blindness. Like seeing people by way of her heart and judging them by the truth in their words and the honesty in their voices.

I had a moment when I was sitting in the dark, listening to the band play, that I was overcome by sadness. Silent tears poured down my face as I sat there thinking about how hard it was. Walking around not knowing where I was going, trying to find my food and not knowing what I was eating because nobody told me. Tasting food that I HATE and not knowing if I had a drink. Wanting to wipe off my hands and not being able to find my napkin. I felt helpless. I felt alone.

But as I sat there crying quietly so no one would know, I started to recognize that feeling. I remember spending a lot of my time feeling that exact same way in the first years of Oli’s life. Lost and alone, crying silently in the dark. I welcomed that feeling like an old friend and greeted her with open arms without even realizing who she is. Who she really is… is my own self pity. My own fear, ignorance, and judgement.

I opened my eyes, dried my tears and sat up straight in my chair.

NO! No more!

I will not allow this twisted friendship to continue! I will not welcome you into my heart! I will not pretend anymore that you will stay for a short visit and then let you live on my couch for years!

You Miss. . . are no longer allowed in my front door.

I am not helpless, weak, alone, unheard, unloved, or in this by myself. More importantly, this is not about me.

This is about Oli and she is none of those things either.

(Thank you for reading about my experience at the Blind Café! If you want to know more about it or want to know if it will be coming to a city near you go to www.theblindcafe.com The End.)

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