Tag Archives: blindness

I have been Carly’d, Stevie Wonder’d, Ray Charles’d and Andrea Bocelli’d.

23 May

I read a post the other day written by Living on the spectrum: The Connor Chronicles called “Have you been Carly’d recently? The blogger has a child with autism and she talks about people comparing her child to Carly. You can read her fantastic post HERE.

If you have a child with autism you know Carly. The amazing autistic girl featured on 20/20. You can watch that video HERE.

Carly was completely non-verbal and autism rendered her unable to communicate with anyone until she found that she could use a computer. Once she discovered speech and language through a keyboard, her entire world opened up. She was discovered to be a “normal” highly intelligent young girl locked within the confines of her own body without the use of her voice. Her fingers became her voice and a link between her and the rest of the world was forged.

It’s truly an amazing and remarkable story.

Unfortunately…it is also a very very uncommon occurrence.

Most of the children who are autistic will not have an experience like Carly. 40% of children with autism also have the diagnosis of an intellectual disability.

Oli has that dual diagnosis along with several others.

Oli will probably never have a Carly experience. She might…but she probably won’t for several other reasons. Her diagnoses plus her blindness complicates matters. It’s perfectly fine if she doesn’t end up being like Carly. She will find her voice in another way.

Many autism families have been Carly’d.

Strangers, friends and family say “Hey! Have you heard of Carly? I bet that can happen to your child too!” This is what the Connor Chronicles blogger specifically wrote about.

I have been Carly’d.

A lot of us probably have been, by well meaning, good hearted people, who just want to give us hope.

The most interesting thing is that I have been Carly’d. I have been Stevie Wonder’d. I’ve been Ray Charles’d. I have been Andrea Bocelli’d. I think that it just happens when you have a child with a disability. People look to that one person with a similar condition that has gone above and beyond and exceeded all expectations of the prognosis laid upon him.

When Oli was born people would always tell me stories of so and so who was blind and did this amazing thing or that amazing thing. They would tell me that she would probably grow up to be a famous musician or a composer. A singer, a piano player, a drummer, a guitarist…because you know Stevie Wonder is blind and he’s musically inclined. So Oli will be too because she’s blind. All blind people have musical talents.

Ummm…well? Not really. No. She’s doesn’t really.

She loves music. She really really loves it.

However… Musically inclined? Not so much.

She loves to bang on everything. Is that drumming? I could probably put her in a heavy metal band and maybe no one would know the difference.

She doesn’t know how to keep a tempo. She bangs on the keys of a piano. She can’t actually “play” anything. She does love music, but I’m not so sure that she will ever be like Stevie Wonder.

And that’s okay.

Oli is Oli. She doesn’t have to be anyone else.

I really think that we need to stop trying to compare our kids with disabilities to others who have a similar diagnosis, but not so common outcomes.

If my African American friend had a baby I wouldn’t look at her and say “Do you know Michael Jordan? I bet your baby will be just like him because he’s black.” Ridiculous right?!

In a sense, that’s basically what we are doing when we say these types of things to parents of special needs kids. We’re placing extremely high expectations on that child and that parent because WE are uncomfortable. Because WE don’t know what else to say. Because WE want to give hope to that parent. Because we WANT to say the right thing.

The truth is…that parent might not need that kind of hope.

That parent probably already believes in that child and knows that they will be an amazing individual regardless of what others before them have done.

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Leaving a child behind

1 May

After what seemed like an hour, but was more likely only a few minutes, I dared to sneak a glance at my husband. His face was a silhouette against the window of our car. With the sun setting orange behind him I could just make out the corners of his lips turning upwards in a smile.

“Move? You really think we need to move?” He asked, sparing a glance at me and momentarily taking his eyes off the road.

“I do. I think that we really should. Oli’s vision teacher is always telling us how great Austin, TX is. I think we should look into it.” I answer.

“Okay. I’m in. She just isn’t getting the amount of services that she needs. She needs occupational therapy and speech. She needs more physical therapy and orientation and mobility. I agree. Las Vegas, NV is definitely not the best place to raise a special needs daughter. Let me talk to my company and see what they can do. Maybe I could somehow transfer.”

And that was it.

The decision to move my family was made on a hot summer day in August 2009 on the drive back from California after a trip there for my birthday.

There were no arguments and no one resisted the change. We simply decided to move.

Bittersweet tears were shed by my husband. He was happy for Oli, but sad for who he was leaving behind. Moving to Texas meant leaving his two sisters, two nephews, one niece and his mother behind in Vegas. It also meant moving much, much farther away from his daughter, my step daughter Thalia, who lived with her mother in San Diego, CA. She was 11 years old at the time.

I didn’t appreciate then what an enormous amount of strength and courage that decision took for him. What it meant to leave a child and move somewhere where he would only see her once every 6-9 months instead of every month. He made the type of decision for Oli, which I’m not sure that I could have ever made. He made a choice to help one child, who may have needed it more, with the sacrifice of not seeing the other. Their relationship would remain tightly intact via computers and nightly phone calls. Many many phone calls.

And many many tears.

Many tears of sadness and loneliness were, and still are, shed on behalf of Thalia.

Some days he gets lost without his oldest daughter.

Sometimes I wonder if he regrets leaving.

I wonder if he thinks it was worth it.

I’m sure most days he thinks that it was. And then. . .I’m sure there are others where the pain and the sadness are too much. Days where he longs to feel the touch of her sweet embrace and see the warmth of her beautiful smile.

I do know that every day he misses her. Every. Single. Day.

We both do.

Heartache written on a piece of paper

1 May

Before I move on with my story, I have to write about Oli’s mandatory 3 year evaluation for school. They evaluate her to determine her progress and also to determine whether or not she still meets the eligibility qualifications for services. She’ll be 6 years old on May 10th.

O&M was the first evaluation scheduled to be completed. O&M stands for orientation and mobility and focuses on body awareness, spacial concepts, walking and navigating around the environment as a blind or visually impaired child. As a totally blind kiddo, Oli always qualifies for O&M. Her O&M instructor is absolutely fabulous. She is a wonderful woman and teacher and I really like and respect her. She has been with Oli since we moved to Texas when she only was 2 ½ years old.

I have to tell you that, before I get into the results of her evaluation. Before I tell you how little progress Oli seems to have made in the last 3 years. This is NOT, in any way, a reflection on her teacher.

This is just Oli. This has always been Oli.

You see, progress is slow with her. She does do new things and accomplishes goals every once in a while. It just doesn’t happen very quickly or very often.

It’s hard.

It’s so hard to watch your child work so hard and struggle. To try and to fail. To improve and do something new, only to have it slip away. Some of her new skills have diminished and then disappeared completely. At the beginning of the school year Oli was standing up from the middle of the floor all by herself. She would just stand up and every once in a while she would start walking. Just like any other kid. Then it stopped. It stopped completely and she hasn’t done it at all in 8 months.

Is that skill gone forever? Did she have a seizure that wiped it away? Did she forget how to do it? Did something scare her? Why does she lose these skills so easily?

I don’t know.

That is my universal answer when teachers and therapists ask me “Why doesn’t she do that anymore?”

I don’t know. I don’t have any idea.

I wish I did. I wish I could take a peek inside her brain and figure it out for her. I wish I could just look at her and say “Remember when you did that? Or said that? Can you do it again please?” I wish I had an answer. Something better than, “I don’t know?”

That’s not how it works though. What is the problem for her? Why does she struggle through learning simple things? Why can’t she be potty trained or pull up her pants? Why can’t she remember where her nose is consistently or say hi? Why doesn’t she tell me that she wants eggs for breakfast or tell me she wants to play with the bells? She used to do all of these things.

Why can’t she tell me that she loves me?

So many questions and so very few answers.

Is it her autism, her blindness, her developmental delay, her intellectual disability? What is it?

No one can tell me because they all overlap.

No one has any answers, but everyone asks me. Because I’m her mom. I should know. At least, I feel like I should know.

I’ve never known the most profound sense of helplessness since meeting my baby girl. I’ve never felt so out of control on all things that feel like they need to be controlled.

I’m her mom. I should know what’s going on with her.

But, I don’t. I never have.

I’ve read a few other blog posts written by moms of kids with disabilities and they talk about looking at other moms and being jealous of them and their children. I understand that. I try not to compare my daughter to anybody else’s children, mainly because I did that WAY too much in the beginning, but sometimes…I still do. Not in the uuuggghhh…I hate you because you don’t know how good you’ve got it…way. But…uuuggghhh…Look how easy it is for your kids. I just wish life wasn’t so hard for her…way. I’m jealous of other special needs kids who learn things easier than her or kids that don’t have multiple disabilities. But then I HATE myself for thinking that way because it’s ridiculous. I don’t know that life is any easier for them or any harder for my daughter. There are a lot of kids out there in way more difficult situations. These are things that just should not be compared.

I think sometimes I just want her to get better.

I look at my other two kids and it just all comes so naturally for them. They just learn. No big deal. For Oli everything is such a bigger deal. She can’t see so right there, it’s a whole new ball game trying to teach her. And then her body just doesn’t work all that well. It seems like she wants it to do things and it just doesn’t. She has low tone and poor balance. Her arms are weak. She needs a very long time mentally and in terms of motor planning just to figure out where she’s going and how she’s supposed to get there.

It just isn’t easy.

Reading these evaluations…isn’t easy.

It’s always hard to read the same evaluation year after year.

It’s hard to read “She used to do this…She used to say this…but now she doesn’t.”

It’s hard because I know she’s in there. I know what she’s capable of. I just don’t know why it comes and goes. I don’t know how to make it any better for her.

She does therapy and therapy and more therapy. She gets PT, OT, speech, vision, and O&M at school. She gets PT, OT, speech, and hippotherapy at home. I just always feel like maybe there’s more. Maybe there is that one therapy out there that we’re not doing and that will be the key that unlocks the door.

In my brain I know that it probably doesn’t exist. In my brain I know that we are doing everything.

In my heart? I want to do more.

Would Things Have Been Different?

24 Apr

Driving down to California that hot day in July, gave me a lot of time to reflect on what had happened during the previous 3 years. I started thinking about the year that I turned 27, 10 months before Oli was born.

Kekoa was only 7 months old. I have a picture of him and me on my birthday that year. He was sitting on my lap helping me to eat a piece of cake. What strikes me most in that photo is how young I look. How peaceful. The worry of doctor appointments, evaluation deadlines, and missed milestones had not yet been etched on my face. That deep penetrating sadness cannot yet be seen reflecting in my eyes. Grief cannot yet be seen shadowed over my shoulder. I had no idea what my life would look like just 3 short years later.

I can’t help but think about what my life would have looked like if I hadn’t had Oli.

Would I still be ignorant to things such as early intervention services, occupational and speech therapists, VI teachers and O & M specialists? Would I miss the looks that strangers give to those who are different than them? Those looks that say, “What is wrong with her? Oh! What is wrong with her?!” Those looks that break my heart. Would I be oblivious to the passing remarks containing the word “retard” or the jokes made about blind people? Would I miss spotting the looks of exhaustion and overwhelming sadness that I see painted all over the faces of other special needs moms? Would I appreciate every single day with my children as much as I do now because I fear that I don’t know what the future will hold? Would I cherish their kisses as sweetly or hold on as tightly when they wrap their arms around me? Would I have learned to walk through the grief and come out on the other side stronger and more secure than ever before?

These are all things that I thought about, but did not have the answers to yet, in July of 2009. That year my sole focus was still on changing it. I wanted to change my life however I could so that I would begin to feel better. I needed to feel like I was DOING something for Oli. Being her mother just wasn’t enough.

As I was lying on the beach or trying to sleep in a strange bed that weekend, I became consumed with what I could do for her.

What I was doing wasn’t enough.
It wasn’t enough.
I should be doing more.
Other mothers were doing more for their kids.
I needed more.
I needed to do more.
I have to get out.
I have to get out of Nevada.
They can’t help her.
They can’t give her the help that she needs.
There has to be more.
There has to be a place that can do more.

My mind was trapped on a hamster wheel, spinning, spinning, and spinning. Chasing an unseen assailant that was ruining my life. Chasing a dream that I would be able to change it all. A dream where I was able to fix this somehow.

Still…a dream that I would wake up to a daughter who was “normal”. A daughter who was not blind and developmentally delayed. That dream that I secretly lived in while the world moved on without me. The world moved on and left me alone with my self-doubt, self-pity, and self-hatred.

Because I didn’t want to feel this way.

I wanted to just love her and believe in her.

I DID love her and I DID believe in her.

I didn’t JUST do it though.

I thought that all of those feeling were abnormal. I thought that they were wrong. And I thought that they made me a bad person. A bad mother. Even though those thoughts were my truth. They were my reality and no matter how much I tried to ignore them, forget them, and deny them…they were always there.

They were there taunting me, shaming me, and making it difficult for me to breath.

They told me lies like, you are alone. You are a failure. No other mother in the world feels like you do. You don’t deserve to have these beautiful children. You are not good enough. You will never be able to do enough. You can’t help her. You will ALWAYS feel this way. You will always be terrified, sad, and miserable.

And I was. For a very long time I was.

I didn’t know what was making me feel that way though.

All I knew? I was unhappy and I needed more support. I needed more support for my daughter.

I waited until we began our drive back to Pahrump to broach the subject with my husband.

As the sun dipped silently beneath soft orange clouds I built up the courage to say, “I was thinking…maybe we need to look into moving to another state. Somewhere that has more vision services and can help us better.”

A million butterflies danced and turned somersaults in my stomach as I looked at my husband, waiting for his response. You could have cut the tension in the air with a knife, once those words were out of my mouth.

A few minutes past and then my husband spoke…

I drive my husband nuts.

23 Apr

(Back to my Oli story…)

I woke up one morning at the end of July 2009, to a request to pack my suitcase.

“Where are we going?” I asked.

“I can’t tell you, just pack some clothes. Oh, and can you pack for the kids too?” My husband looks at me sheepishly.

“How am I supposed to pack for everyone if I don’t know where we are going? I will only pack if you tell me what I am packing for.” I reply in my true party pooper nature.

“We are going somewhere for your 30th birthday. If you want that surprise that you say that I never treat you to, you will close your mouth and just pack. Please. Be a nice girl and just pack and don’t make me ruin it for you.” My husband begs me.

But, alas, I am never one to make things easy on him. I start guessing.

“Camping? We’re going camping aren’t we? I don’t want to go camping. I love it, but I didn’t imagine my birthday so full of mud and dirt and so NOT full of bathrooms and showers and fully cooked meals.”

“No. We’re not going camping.” Seth responds. “Go pack.”

“The mountains. We’re going to the mountains aren’t we? I don’t know about that? It might be cold at night and then Oli won’t sleep and then I’ll be grouchy and you’ll be grouchy and then it will just suck and I’ll want to come home because the children will make me crazy.” I’m imagining snow covered mountains at 3 am and watching a beautiful sunrise amongst other patients in the looney bin. All of us wrapped cozily in straight jackets being sent there by our lovely children and our husbands wayward attempts at disastrous surprise birthday trips.

“No. We’re not going to the mountains. Now just go pack! Why do you have to make this so difficult?”

“Because that’s just me and that’s why you love me.” I reply with a sweet smile and a voice dripping with sarcasm.

“Are we going to Hawaii? I LOVE Hawaii! That would be the best birthday present ever! I could totally handle mud, dirt, non sleeping children and the looney bin in Hawaii! Let’s go there!”

“You’re not going to play nice are you? You’re going to make me tell you.” He smiles despite his annoyance because he knows me so well and had been planning on telling me the whole time.

“No and yes. No I won’t play nice and yes I will make you tell me.”

He shrugs and lets out an over embellished sigh. “Okay. If that’s what you want my darling, annoying, party pooper wife. We’re going to California. I rented a house for 3 days on the beach. Happy?”

“Yay! Yes! Yes I’m happy! I love California! Now I’ll go pack. What should I bring? What if it’s too hot? What if the kids get sunburned? I need lots of sunscreen. Did you pack the beach umbrella? Do we need to pack food for the house before or after we get there? Should I wear my blue bikini or my red one? Good thing I’m not showing with this baby yet. What about clothes for at night? It gets cool at night. Should I pack coats for the kids? What are you bringing?”

“Aaaaaggghhh! Shannon! YOU are making ME crazy! I’M the one who will end up in the looney bin at the end of all this! Just GO PACK!”

I smile sweetly at him again. He loves me.

Maybe this whole turning 30 thing won’t be as bad as I thought. There is one thing that we do have to discuss while we’re gone. Something that has been running through my mind and keeping me up at night.

We need to move. We need to get out of Pahrump, NV.

We need to go some place that isn’t so isolated and has better services for Oli. I can’t stand the hour long drive to doctor appointments and the minimal therapy services she is receiving. We have to do better for her. We have to go someplace that can help her to learn and to thrive in this world as a blind child. We need to go where doctors understand her and therapists know how to teach someone who can’t see. Some place where she will not be an unusual case with an unknown condition.

I have to get out of this town. I feel like I’m drowning in a sea of uncertainty and suffocating on loneliness. I feel like if we could just get out and go someplace where people could help us, that it would all change. I wouldn’t feel like I was so weighed down by Oli’s disability and maybe I could learn to cope better. Maybe I would stop pretending that I was fine and I could start being honest. Maybe I would be able to tell someone that I hated this. I hated the fact that Oli wasn’t what I had imagined. Maybe I could tell someone that I was terrified of this baby that I was going to give birth to in 9 months. Maybe things would be different in a different place. Maybe I could let go of the hatred that I held for the way I felt. Maybe…Maybe I could just accept it and move on.

I’m thinking Texas. I’m thinking Austin, TX sounds like it would be a good place for my family. I hope my husband agrees… He’s going to get a surprise of his own this weekend.

Surprise honey! I want to move!

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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