Tag Archives: blindness

I never said it would be easy

29 Mar

I was honored to be able to present at the 2014 TAER conference again this year. This is the second time that I was able to speak.

Can you believe it?! Twice! What?! Are they crazy?! Did they hear my speech the first time? Do they remember the boxes of tissues that we passed around the room last time? Apparently I forgot about that part too because even I didn’t come prepared.

I’m a crier. I know. How can I still cry at a story that I’ve lived, written, and spoken about frequently?
Some things will never cease to be just a memory. I will relive the story of Oli’s birth and her early years every single time that I speak about it, for the rest of my life.

Yes. It has gotten easier. The pain is a little bit less with the passage of time. It’s easier now because I know that her story, my story, has a happy ending.

I know that I am able to relive those early moments, the ones that are burned in my brain, live them, feel them, talk about them, write about them, cry over them, and then go home and pick up my girl and realize how far we’ve come.

Writing about it and talking about it has actually become my therapy. My outlet for grieving and healing.

This will surprise the people who have read most of my story or seen me speak, but I used to never talk about how I felt about any of this. Never.

Fine was absolutely my favorite word and I was FINE! Don’t you know how fine I am?

I was fine, she was fine, we were FINE, people!! I would say this as my life was literally falling apart around me.
I would say it as the tears stained my pillowcase at night…
I would say it as my heart felt like it was shattering into a million pieces every time a new diagnosis washed over my brain and flooded the banks of my emotions…

I was fine.

I would say it to everyone.

Anytime a friend or family member would meet my gaze with worry in their eyes and a soft hand on my shoulder and ask “How are you?” I would respond with an outer persona that was not me. I would speak the word “fine” and my soul would scream out at me to reveal the truth.

I. Was. Not. Fine.

But I didn’t know how to tell anyone anything else. I didn’t know how to tell people that I was struggling because I thought that it would mean that I wasn’t a good mom.

I thought that because my life and my emotions didn’t follow the people’s stories that I’d read about online, you know, the ones that are like mine now, I thought that it meant that I was a terrible, awful mom.

Let’s be honest here.

My blog and my facebook page now? Would have made me feel like total crap back then.

I would read stories like mine with a disgusted feeling in my stomach because I didn’t feel any of the things that I feel now. The old me would have been so jealous and so envious and so….blah…about the new me. I was so caught up in my negativity and my own feelings of self pity that it would have killed me to read about a mom who just accepted her life after the birth of a special needs child.

Come on. I mean I was no where near acceptance. We weren’t in the same zip code. We weren’t even on the same continent.

I did NOT accept that I had a child with a disability.

I did NOT accept that my life had taken a turn that I wasn’t expecting.

I did NOT accept that I couldn’t fix it, change it, run from it, hide from it, bury it… live with it.

I didn’t accept that this was something that I was going to have to learn to live with.

I did not want to have to accept the fact that I had to accept the fact that I had given birth to a daughter with a disability. A blind child. A child with multiple impairments.

No. That was totally unacceptable.

So I would read about moms who shared their beautiful journeys to acceptance, except I never saw their journey. I only saw their destination and that destination was acceptance. I didn’t understand that they all had a story to tell about getting there.

I wanted someone to show me the precise steps that they took to just be okay with it all.

To be more than okay with it all.

To be happy.

What did they do?! Why won’t they just show me?! Can’t they just come over to my house, take my hand and walk me through it?! Why not? Why were they doing this to me? Didn’t they know that I was dying here?!!!

Of course they did, but now I know that no one takes a specific path. There is no right way to do this deal.

They couldn’t just walk me through it. I had to find my own way. I had to create my own path.

And as much as I felt like I was doing it all wrong back then, now I know that there is no wrong way either.

I wish that I had known that while reading the stories of acceptance and hope that other parents put out there, that they were actually planting little seeds in my brain. They were planting the seeds that would eventually grow into flowers along my path and allow me to find my way home.

I think that this is the other reason that compels me to share my story today. My heart physically hurts every time that I see another mom struggling. I see them and I feel their pain just like it was my own.

I wish that I had the magic to bottle up the way that I feel today. I wish that I could just give it to those moms.

But this is part of the beauty. It really is a beautiful journey even when it’s horrible and ugly and painful and sad.

One day, all of us are able to stand at the doors of our destination, look back on our journey, and then look another struggling mother in the eyes and say “I never said it was going to be easy; I only said it would be worth it.” (Quote by Mae West)

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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 makes me really sad mom.

9 Feb

I got the call that I am always terrified to get when I’m away from Oli.

“Shannon. Something is wrong with Oli. I think I need to call an ambulance.”

My heart fell to the floor and stayed there until she was wheeled into the ER on a stretcher and I could see her.

“What do you mean? What’s wrong?” I asked as my heart raced, but my mind cleared.

“Well she’s breathing really funny. Like holding her breath and I can’t keep her awake. Here. Listen.” My mom, who had been home with her while I took my other two kids to a horse vaulting stable, put the phone up to Oli’s lips.
I hear a strange grunting sound coming from my daughter.

“She’s been doing this for a while now and it’s getting worse. When she falls asleep it’s better, but as soon as she stirs she does it again.

“Mom. Listen. Lift up her shirt. Can you see her ribs or her sternum as she breathes? Does it look like she’s sucking in?”

My mom quickly checks. “No. No I don’t see that.”

“Okay good. What about her lips? Are they pink or do they look blue?”

“They’re really pale. I just don’t feel right about this. I feel like something is really wrong with her. She just keeps falling asleep.”

“Mom. Do you feel like you should call an ambulance?” I ask calmly. Going into more nurse mode at this point than mother mode.

“I’m not sure. Maybe. Something is wrong with her breathing.” She answers. I can hear the fear in her voice.

“Okay. If there is even a question that maybe you should, I need you to call. I am at least an hour away and by the time I get there to check her, things could have gone dramatically downhill. My phone is almost dead. I only have about 10% battery left. I’m going to call Seth and tell him to go home right now. I’ll have him call you on the way. He should be there in 10 minutes. Hang up and call 911.”

“Okay.”

I hang up and quickly call my husband.

No answer.

I call again.

No answer.

Oh my god. My phone is going dead.

I shoot him a quick text.

‘Call me NOW.’

He calls back immediately.

“Seth. I need to you to go home right now. Oli is not breathing right.”

“I’m on my way.” He replies in a calm voice.

I start to tell him that I’m leaving the stable now and that I’ll be about an hour…but he’s gone. I’m talking to dead air.

That morning Oli woke up happy. My mom and I had plans to take all three kids down to a stable in south Austin where their horse vaulting team has a Barn Buddies day once a month to raise money. The kids get to come down, learn some tricks on the barrels, and then get up on the horse to practice them with an experienced horse vaulter.

After Oli got up on Saturday morning she fell back asleep right after breakfast. I sent my mom a text and told her that maybe Oli shouldn’t go. I thought maybe she wasn’t feeling very well. My mom decided that she would just stay home with her and that I would take the other two kids and our dog. Shaka had service dog training right after the kids were done riding.

When I left, Oli was playing happily with her toys.

Kekoa and Ginger had an awesome time on the horses. It was really great because they always watch Oli ride at hippotherapy, but never get to ride themselves.

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That morning of fun quickly turned into a nightmare.

This was not Oli’s first ambulance ride.

Not even her second.

Her first executive ride to the hospital was one of the absolute worst days of my life.

October 4, 2011 is a day I will never, ever forget. Never.

That morning I woke up next to Oli violently convulsing and gasping for breath. She ended up being intubated with a machine breathing for her for two days.

The next ride was August 26, 2012.

And the last was on Saturday February 7, 2014.

I’d like to say that this will be her last, but I know that it might not be.

Her seizures, any person’s seizures, are no joke. I know that lots of kids have them. Some have hundreds a day. Some are lucky like Oli and only have them once in a while.

It’s really all about perspective. I don’t know anything but what I know about Oli. Her journey is no more or less than anyone else’s. We only know the life we live so it’s important not to minimize or over exaggerate something that we have no experience in.

I get really uncomfortable when I meet someone and they say “I just don’t know how you do it?! I could never do what you do!”

Yes you could. Yes you would.

I find myself thinking those same things though when talking with my friend who has a daughter who literally can have 100 seizures per day.

How does she get through it? How would I?

But I don’t have to worry about that because that’s not our life. I can talk with her about it. I can tell her how extremely terrified I was to get that call. I can tell her how Oli wasn’t breathing well and how awful it was because I’m sure she had more than one seizure yesterday. Like maybe 3 or 4 or 5. (I don’t know because they were seizures that we couldn’t see.)

And you know what she says? Not “Well that’s NOTHING! You should be grateful it was only a couple. My daughter…” Blah blah blah.

Nope. She doesn’t say any of those things.

She says “Wow! How scary! Do you need anything? Do you want to talk about it? How can I help you get through this?”

She validates my reality.

She doesn’t compare it.

That is powerful.
So incredible powerful.

I hear people compare themselves and their struggles to other families all the time.
Why?
Why are we judging when we should be supporting?

I’m so lucky to have so many incredible families in my life who do just that.
They support Oli. They support me. They support my kids and my husband.

We desperately need support because scenarios like the one we had on Saturday, do not leave a family unscathed.

The words I spoke to my children in the van as we left the stable, will not soon be forgotten.

Especially by my 8 year old son.

“What’s wrong mom? Why aren’t we going to take Shaka to training?”

“Your sister is having trouble breathing and is on her way to the hospital. We need to go there now.”

He immediately becomes quiet.

My three year old, Ginger, does the exact opposite. She has a million questions.

“What do you mean? What is she doing? I’m hungry. Can we stop for lunch? Can I have a snack? Do you have any juice? Are we going to see Grandma now? Are we going to Shaka’s training? Where’s Oli? Where is she going? Where are we going again?”

Oh. My. God. Ginger.

Ginger is either the best person to have with you in a crisis or the absolute worst.

I’m leaning towards the worst. 🙂

It was good because she was distracting me with her 5 billion questions and it was frustrating because I was trying to figure out where I was going, who was going to take the dog, which hospital they were taking her to? Did my husband get home? Are they on their way? When was Ginger going to STOP TALKING!

I got a hold of my friend, Cat, who just happened to be at the stable with me.

“Cat. I need you to come get the dog. Oli is being taken to the hospital by ambulance. They’re taking her to Dell Children’s.” I speak rapidly into the phone.

“I’m on my way.”

Man I have some good friends and family.

I had so many people texting and messaging me, offering kind words, support, and offers to watch my other two kids. It was very very humbling to realize how many people were willing to drop what they were doing and help.

Once we got to the hospital Kekoa was even quieter and Ginger even more inquisitive.

Fortunately Cat got there as soon as I did and took the two kids before Oli was wheeled into the room.

We didn’t know what to expect, but I knew I didn’t want my kids to see her surrounded by hospital staff, talking, asking questions, and working on Oli.

My son has already seen too much in his short 8 years.

Once Oli got there she was breathing better. She was doing some breath holding off and on, but didn’t seem to be in distress. She definitely wasn’t herself. She was constantly falling asleep and wasn’t really moving at all.
If you know Oli, this is completely out of character. She is always going.

After we had been there a little while Cat asked if we could bring the kids in. Just so they could see that she was okay.

Unfortunately as soon as they got there a team came in to start her IV. My poor Kekoa was so flustered that when Cat escorted him back out of the room he grabbed my purse and tried to walk off with it.

After that, they didn’t come back in.

I can’t even begin to imagine what he must have been going through. I know what I was going through and it was awful. And I knew what was going on! He only knows that one of the times his sister took an ambulance ride, she almost didn’t make it back home.

Oli stayed at the hospital for about 9 hours. They ran a bunch of tests and then did an EEG.

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By the time they did it she was mostly back to herself. She was worn out and acting sick, she had been running a fever too, but she was aware of what was going on and awake. Once the EEG came back normal at 11 pm they said that, if we were comfortable, we could take her home.

We opted to go home.

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Oli was more than happy to be sprung from the hospital.

The verdict was seizure activity brought on by… we don’t know. A little virus maybe.

Seth had taken the kids to another friends house in the afternoon and then my mom went and picked them up so they could stay with her for the night.

Shaka stayed with Cat and his girlfriend Dubi.

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Yeah. He didn’t miss us at all. He is in love.

This morning my mom said that Kekoa was very tearful at her house.

We finally got him to talk about it when he came home.

“It makes me really sad mom.” He admits in a quiet voice.

He also said that he was really scared for Oli. Really scared.

Me too buddy. Me too.

It’s important that I never ever minimize his feelings.

I need to never compare, judge, or make him feel like he has to feel any other way, than the way he does.

As important as it is to me to have my friends and family validate how I feel…it is more important to me

that I validate my son’s.

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Special needs parenting or nauseating roller coaster ride?

11 Oct

I wanted to write something for the people who may have babies and are just beginning to fall, head first, into this world of special needs parenting.

If you are like me, you are most definitely feeling the bounds of gravity as you plunge down screaming towards an end, a ground that seems impossibly far away. You’re racing towards a bottom that you cannot see, you cannot feel, and you believe you may never reach the end.

Let me assure you that you will.

Oh yes.

That end, that bottom, that ground is there.

BAM!! CRASH!! BANG!!

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Or maybe you’ll land a bit more softly.

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Or maybe you’ll even receive a warning prior to landing.

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(Where was this sign when I was approaching?)

There will be a moment, a second, an hour, a day, a week, a month… I cannot say how it will happen for you…where everything will begin to smooth out. It will begin to even out. You will start to once again feel comfortable in your own skin again.

Or you will smack your face on a rock buried in the mud at the bottom.

This was me.

For me it happened in an instant.

A head jarring, face slamming, body crunching SMACK onto the bottom.

I cruised along downward in misery, in self-pity, in blame, regret, remorse, grief, sorrow…for years before a light bulb went off in my head like a giant flashing beacon begging me to notice it. It had been there all along. Drawing me down. Steadily building momentum and pummeling towards the forefront of my brain waiting for the right moment to come out and slam me into that pit.

Hello?!! Here is your awakening! Here is the answer that you’ve been waiting for!

THIS, MY FRIEND, IS THE END.

STOP FEELING SORRY FOR YOURSELF! STOP FEELING SORRY FOR HER!
SHE IS WHO SHE IS.
NO MORE.
NO LESS.
JUST BELIEVE IN HER.

And that was it. That was all I needed to “get over” the sadness. I was able to move on at that point.

All of the self hatred, self pity, sadness…it all just went away.

It seems pretty simple.

Looking back at it, it seems like someone along the way should have just told me that. They should have been able to say “just get over it”. “Just accept her.”

In truth… they did.
Lots of people did.

But hearing the words with my ears and believing them in my heart are two totally different concepts. I heard lots of people telling me how to go about moving on from this thing that had happened to me.

I heard lots of people tell me how they had dealt with something similar. How they had moved on from it.
I listened and listened. I prayed. I pleaded. I just did not feel it.

Until I did.

Until I understood with all of my heart that this was really not something that had happened to ME.
Until I threw away all of my expectations and just expected her to be the very best that she could be.

Which may not make sense to you at all, but it makes perfect sense to me.

How can I not have expectations for my child?

This is how.

I expect nothing at all of her and I also expect everything.
I expect that she will do everything, nothing at all like anybody else in the world.
I expect that she will do nothing but everything that she can do.
I expect that she will do and be who she is and I love her for that.

It’s just a different perspective. A different way of viewing life and the world in general.

Before she was born I had all of these dreams, all of these visions, of how we would be, how we would exist in the world as mother and daughter.

After she was born I mourned the loss of THOSE dreams.

I didn’t realize that I could come up with NEW dreams.

I didn’t know that I was able to re-create this new life however I wanted to.

I didn’t know what a blessing and a gift Oli truly was to me.

Once I began to realize all of these things my whole life began to change.

I wouldn’t want it any other way now.

So.

If you’re just beginning this terribly bumpy, painful, twisting, and nauseating roller coaster ride of special needs parenting I want you to know, it gets better.

I promise you. It gets better.

You may have to be patient. You may have to hang on, white knuckling your life for a little while before it does. But it gets easier.

People used to tell me “time heals all” and I thought they were full of B.S.
I never thought that it would get easier for me.

You know what?

I was wrong.

It did get better and it continues to get better all the time.

I just have to leave those expectations and pre-conceived notions of how I THINK it should be, at the door.
I just have to live my life loving my Oli however she is.

Or…

Maybe it will be totally and completely different for you.
Maybe you’ll be given a diagnosis and be fine with it from the start.
I’m not trying to speak for the whole world here. I’m just trying to give someone else hope that if they’re feeling like I felt in the beginning, it will get better.
Besides…what do I know?
Some days I’m still trying to figure this whole thing out.

Eme’s Army: Fight for Sight

30 Sep

Oli was recently given an amazing opportunity to work with another special needs child on a campaign by a company called Paper Clouds Apparel.

Paper Clouds sells t-shirts, hats, sweatshirts, hoodies, and totes featuring the artwork of special needs children. Oli has her handprint heart on two different t-shirts and a tote that is now available for purchase. She is featured alongside another child named Logan and together they have some incredible things to choose from.

Paper Clouds Apparel employs special needs adults AND they donate 50% of the proceeds to a charity that we choose. We chose http://www.emesarmy.org. Emerie is a little girl who needs our help to get her eye sight back. Please visit http://www.papercloudsapparel.com and check it out!!

“The Cause (Sep 30 – Oct 13):

Eme’s Army
Eme is 6 years old and she is being robbed of her sight by CRB1-LCA, a very rare genetic disease. Eme’s Army, made up of supporters and volunteers like you, raise awareness of childhood blindness and fight for those like Eme. CRB1-LCA has no treatment. A gene therapy clinical trial is being conducted for RPE65-LCA right now that is working and is giving blind kids like Eme their sight back. By replacing the mutated/broken gene with a good copy of the gene, blind kids can see again. It is a fight against time. If too many of their retinal cells die, the cure in clinical trials will not work. So please join Eme’s Army and help them FIGHT for SIGHT! All money raised by Eme’s Army funds research through the Curing Retinal Blindness Foundation (CRBF). An all volunteer organization, CRBF was co-founded by Emerie & her family to stop CRB1-LCA.” -Quote from http://www.papercloudsapparel.com

I can’t even begin to describe what this means for Emerie and her family. Imagine having a child go blind and then find out that there may be a way to treat it…it’s beyond incredible.

I would do ANYTHING if there was a way for Oli to see.

Anything.

I may not be able to help Oli get her vision back, but I can help Emerie in a small way.

What an opportunity. What a privilege it is.

It’s a privilege not only to work with Eme’s Army, but also to work with a company like Paper Clouds Apparel.

What they are doing for the special needs community is remarkable. They are making a difference in the world. They are making it better and more accepting and more “normal” for kiddos like Oli.

That’s something that I am extremely proud to be a part of.

If you can, please visit their website or their facebook page.

Share this campaign with your friends. Let them know that they can help too! I never ask you guys to share anything, but this is important. The more money we raise the better chance Eme has of seeing her family again.
You don’t have to share it from here. Share it from Paper Clouds Apparel. It doesn’t matter how, just tell people about it.

Thank you!

Here are a few of the shirts to choose from:

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Autism is just one color on the rainbow

27 Sep

I am doing an autism walk with and for Oli tomorrow. Because of that, I have been thinking a lot about what autism looks like and what it means in my family.

Oli was diagnosed with autism 3 years ago.

She was diagnosed by a team of specialists who specifically look at the differences between autism and blindness because they can appear on the outside to have shockingly similar behaviors.

Flapping in a typically developing sighted child is not part of normal (and I use that word loosely of course) development.

Flapping in a typically developing NON sighted child IS part of development.

A child speaking with echolalic patterns is not normal in a typically developing, sighted child.

Echolalia can be normal for a blind child.

Speaking, followed by a sudden lapse into being completely non verbal over a period of a few months, that is not caused by anything neurological…is NOT NORMAL in any child blind or sighted.

Yet this is exactly what my child did.

This is what led me to seek further answers by a team of specialists in Philadelphia.

This, along with other things, is what led to Oli’s diagnosis of autism.

So…there I was…3 years ago…raising a child with no vision, no language, and no way of communicating with me…

I was devastated.

This is the thing that kept running through my head,

“She can’t see. She can’t speak.”

Can you imagine, as a mother, what that feels like?

I had to face the reality that #1 Oli was never going to meet my gaze. She was never going to look into my eyes or look at me at all. I was never going to be able to look into her eyes and see an unspoken emotion that might lie hidden there. I was never going to be able to discern ANYTHING from her eyes.

And #2 Oli may never speak. I might never hear “I love you” roll off of her tongue.

(Granted, I might never hear the words “I hate you” either, spoken from the angst filled heart of a teenager, but that’s a different blog topic.)

Trying to explain this sadness to my family and friends was and still is difficult for me.

Most of them, when I do try and talk about it, respond with “Yeah but what if’s…” or “Yeah but it could be worse…”

They are right.

But it doesn’t make me feel any better.

I would rather hear “That must be hard” or “I’m sorry” or nothing at all.

I have found that the majority of the times that I do speak about the sadness, I do it NOT looking for answers to this problem. I am not looking for a solution to fix my heart. I am looking for an ear just to listen. I am only looking to get it off of my chest and express my sadness in words rather than bottle it all up inside and never speak about it. Which is what I did when she was born. I would rather tell you about it and leave it out there on the floor for those 5 minutes than carry it around with me for the next few days or weeks.

I know that Oli’s blindness is never going to be fixed or cured and it will never even improve. It just won’t. That’s life. That’s reality.

It took me longer to accept the fact that her autism will never be fixed or cured and it may never improve either.

But the truth is that it does not matter what label she has or what diagnosis she is given.

It doesn’t matter if those horrible evaluation histories label her as “Globally developmentally delayed” or “Autistic”.

It doesn’t matter because she still receives every possible service that would be available to her through either diagnosis.

And it doesn’t matter to me because that label says nothing about who she IS as a person. It may make her act a bit different on the outside. It may make language more difficult, but it will never define who she is as a person.

Just like the blindness will not define her.

It just won’t.

It took me a long time to figure that out too.

So today autism means less to me than it probably does to other people.

Autism for Oli is just one more color on the vibrant rainbow that makes her who she is on the outside.

But it can’t even come close to touching the spectacular kaleidoscope that she is on the inside.

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.

What if she never speaks?

20 Jul

As I stood in the hallway, talking and listening to this Italian mother speak about her 14 year old, blind, autistic daughter Eliza, one thought kept racing relentlessly through my mind. I had one question that I needed to ask this mom about the daughter that looked, and acted so much like my own. I wanted a tiny glimpse into the future of this Italian world that seemed to mirror my own.

“Does your daughter speak now?” I asked her quietly, trying to hide the desperation from my voice.

“No. No she doesn’t.” She replied, quite clearly seeing the pain seep into my eyes.

In that moment, in those brief few seconds that passed between us, the reality of what we both were feeling, the dreams that we had for our girls, were spoken without any words from our lips. They were spoken between the souls of one heartbroken mother to another.

She knew that when she reveled that truth and her reality to me, that she was giving me an answer that I didn’t want to hear.

I didn’t want to hear it.

Do you know what I wanted to hear? Of course you do.

I wanted to hear that her daughter had learned to talk. I wanted to hear that after years of silence, 14 years of silence…that she could now talk about what was going through her mind.

I desperately wanted to hear that one day my daughter would learn how to talk to me.

But that wasn’t what had happened.

As she began telling me the story of her daughter’s communication struggles, I began to feel more and more uncomfortable. I began to feel more and more angry. I began to see more and more similarities between our children.

And I didn’t like what I heard.

Her daughter had also learned to talk when she was 2. She had also stopped when she was 3. She had started speaking again right about the age that Oli is now…

And then she stopped.

She just simply quit speaking.

One day it was there, and the next day it just wasn’t.

Poof.

BOOM!

There it was.

One of my biggest fears had once again been dropped at my feet.

When Oli began speaking again a few months ago I couldn’t believe it. After 3 long years of complete silence I couldn’t believe my ears when she started to say a few words again. With every new word she spoke the fear of what she wouldn’t say the next day crept in the back of my mind. The questions of “What if she doesn’t talk today?” came with each morning sunrise. The fear of “Will today be the last day that I hear her speak?” came with each nightfall.

And here stood this mother telling me that all of my fears that I so successfully banished to the back of mind, might one day come true.

What now? What do I do with this information?

After a few days of living within that fear and those terrible alternate realities that my mind likes to create; the ones where everything goes wrong and I am helpless again struggling against a monster that I could never hope to defeat, I realized that I was projecting a future upon Oli that I have no control over. I was sentencing her to a life of silence without any knowledge or proof that this is what would happen. I was letting myself believe once again in a hopeless situation that has absolutely no reason to be hopeless.

Oli is not Eliza. Oli is Oli.

What she will or won’t do has nothing to do with what another child has or has not done. Even though that other child is so similar to her. She still is an individual. One capable of fulfilling any potential, achieving any goal and overcoming any obstacle that lies before her.

Oli is Oli.

I have said it before, she will do what she will do regardless of how much time I spend worrying about it. Regardless of how much time I spend crying over it.

So I took my own advice.

I spoke the words to myself that I have spoken to other parents about their children.

As her mother, one of my most important jobs is to never stop believing in her.

And then there were two…

18 Jul

Last weekend I had the privilege of attending the ICAN conference in Chicago, IL. ICAN stands for the International Children’s Anophthalmia/Microphthalmia Network. Every two years, children and families from all over the world, travel to learn about and meet other people with anophthalmia and microphthalmia.

It’s always great to learn about the new technology available for blind people. It’s always fantastic to learn about new advancements in the treatment of these conditions.

But nothing beats what it feels like to look at another child or another family that knows exactly what your life is like.

No one knows what it’s like to raise a blind baby, to deal with the trials and tribulations of conformer therapy, to deal with other people who stare at your child…

Than other parents with a child just like yours.

No one knows about the breakdowns in the car because someone said something hurtful about your beautiful daughter…

Except another family who has walked in your shoes.

No one knows what it’s like to hide your newborn baby underneath a pile of blankets in her car seat because you just can’t stand to have one more person comment on how your very wiggly, giggly, very AWAKE baby, is sleeping because she can’t open her eyes…

Than the other mom who has had it happen to her.

The families that I met this weekend? Know EXACTLY what I’m talking about.

It’s so refreshing to talk about all of these things and to look into another mom’s eyes and see that flash of recognition. That spark of “Yes! Yes! That’s happened to me! That’s how I feel!” I don’t have to explain everything. Half the time, I didn’t even have to finish my story. I would get half way through and then see her head start to bob up and down and a knowing smile, play on her lips. Ahhhh…yes. You get it.

There was still some explaining to be done though. There were still a lot of walking, talking, interactive blind children running around the halls that weekend.

There were many many children who were NOT like my Oli.

To be honest…it makes me feel a little bit weird and strange to be around them. I feel kind of awkward. I don’t know what to say to a talking blind kid. Give me a non-verbal, blind kiddo with multiple disabilities and I feel right at home. Otherwise, I’m out in deep water. Do I offer my hand to them? How do I introduce myself? What do I say?

I’m just not used to it. I don’t know that life. I only know my own.

It was still pretty cool though. I was sitting at dinner and was watching a new friend talk to her son at the table. She was telling him where his knife and fork were. That there was a little lip on the edge of the plate. And then she took his hand and guided it over the plate to show him. I could only stare and smile and think to myself, “Yes. I must be doing it right. I do all of those things with Oli even though she can’t tell me if that’s correct or not. It must be, otherwise this other little boy would tell his mom that it wasn’t.” I need to see those kinds of things. I need to know that I’m doing it right with Oli.

There was one little girl that I just can’t get out of my head. A 14 year old girl from Italy. She was just like my Oli. After seeing her, I don’t think I’ll doubt Oli’s autism diagnosis again.

Little Eliza from Italy was JUST like Oli and she also has the diagnosis of autism. She too, is totally blind and non verbal.

Her and her parents sat next to us at dinner on Saturday. I had spoken to her parents a little during the day. The geneticist wanted me to talk to them about some different forms of communication techniques and tactile symbols, to use with her.

I knew that when they described her, I had that look on my face. I know that as I listened to her mother speak about her, I had that spark in my eyes. “Yes. Yes! I know exactly what you’re talking about.”

Meeting Eliza, was a whole different experience. I have never met another child that was like Oli. I mean like her in EVERY SINGLE WAY!

I couldn’t take my eyes off of her during dinner. Her mannerisms, behaviors, the way she moved her hands, the way she ate her food, the way she relied on her mom…it was ALL like Oli.

It may have been a little strange for her parents. More than once they caught me with my mouth hanging open, looking like an a-hole, staring, smiling, and nodding in their daughter’s direction. More than once I had to excuse myself and say, “Oh my gosh!! She’s just so much like my daughter!! I’ve never seen that before! I’m sorry for staring.”

More than once I felt like bursting into tears because I was just so happy that I had found another mom who knew what it was like.

There are, of course, other children born blind and who have the autism diagnosis. I’ve met some of them.

They were not like Oli.

I later asked the genetic counselor at the convention what made Eliza and Oli so similar. They have the same eye condition, but different gene deletions. Oli is missing the OTX2 gene, while Eliza is missing the SOX2 gene.

She couldn’t really give me a definite answer, other than to say that there had to be some genetic correlation that caused the blindness and the autism. Somewhere in those genes lies the answer, or rather, the missing answer to the puzzle. Something about those missing genes that caused their eyes not to develop and then whatever caused the autism, is the same in Oli and Eliza.

It was fascinating.

The next day when it was time to leave, I said good bye to Eliza at breakfast. She took my hand in hers and ran her fingers over and over my palm. She found my ring and was twisting it around. She smiled and smiled… Her mom said, “Wow! She really likes you!” I told her “I know. It’s because I just totally understand her. It’s because we have this bond that ties us together. It’s because of Oli.”

And that is the story of the day that I finally met another child like Oli.

I used to wonder if she would ever have friends.

29 May

As I waited at school with Oli after her therapy, a remarkable thing happened. I watched my daughter interact with two little girls in her kindergarten class. Oli isn’t in her kindergarten class regularly. She is in an FLC (functional learning class). She does attend music twice a week with them and has gone on a field trip with their class.

What I witnessed today at her school…will never be forgotten.

To the little girls I watched in the elementary school hallway, this letter is for you.

Dear little girls,

I watched you today as you walked past us. You were lined up with your class on the way to the library. You looked over towards the entrance and stared at Oli, walking in with me. She was holding my hand, shaking her head, flapping her other hand and humming loudly.

I don’t think you were staring at those things though.

You were staring at your friend as she returned to school.

You both ran excitedly up to her calling her name. “Oli! Oli! It’s Oli! Hi Oli! How are you?”

You touched her arm, leaned in close and said hi again. Then each of you took turns hugging my girl.

You talked to her, touched her and hugged her like you were her best friends. Like she belonged with you. Like you never even noticed that she was any different from you.

It seemed like you didn’t notice that she couldn’t share secrets with you, play like other kids or run and jump on the playground.

Those things didn’t matter to you.

You just treated her like she was your friend.

You didn’t see her face light up behind your back as your arms were wrapped tightly around her. You didn’t see the peace in her hands as she gently ran them down your braid. You didn’t see the light radiate from her smile as you talked to her.

I saw.

You didn’t see the tears well up in my eyes either.

You won’t know how I will forever treasure that moment.

You see girls, when you have a child that is born different from other children, you have certain fears. Certain things that absolutely terrify you. You pray with all of your heart and dream that it will be different and that your fears will not become her reality.

You fear that other kids will be mean to your child. You fear the bullies and the hateful words that can spew from heartless people. You fear that your child won’t have any friends.

You dream that people will understand her. You dream that kids will look past her differences and treat her with compassion and understanding. You dream that your child will never walk the halls, eat lunch or play at recess alone.

As I watched you with Oli today, I saw that everything that I have ever dreamt for her…was standing right before me. It was present in the quiet voices, the gentle touch and the shy smiles that took place between the three of you.

It was present in your friendship.

You’ll never understand what you have done for me today. I don’t even think you’ll understand what you have done for Oli.

I understand though. I know what it means to have children who love her for who she is.

If my daughter grows up around children like you…she will NEVER feel apart from. She will ALWAYS feel a part of.

In your single act of kindness, something that you didn’t even think twice of before acting on, you have erased some of my fears.

I will sleep well tonight, little girls.

I will sleep well knowing that my daughter is not alone and that she has people like you to walk beside her.

Thank you.

From the bottom of my heart…

Thank you.

*tears* Oli has friends.

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