Tag Archives: life

Something is wrong with Oli. Part 2: What was happening?

11 Feb

I got a text from Oli’s dad a few hours later around 10am saying “She’s getting the full work up- Covid and flu test, CT scan because her tummy is super swollen and hard. Blood work and even a catheter.” I continued working that day and then took a break, heading into my front yard to begin putting up my outdoor Christmas decorations. I began putting up my Christmas decorations. I can’t believe I was so oblivious. As my little girl was lying on the uncomfortable, hard surface of an ER cot, fighting for her life, I was prancing around my front yard putting together Rudolf and blowing up a 9ft gingerbread man. If I could, I’d go back and punch that girl in the throat and tell her to get her ass in the car immediately! I was an ignorant, naïve person who thought nothing bad would ever happen to me or my family.

I was wrong.

The first few calls that I got from Oli’s dad made it sound like the hospital didn’t seem too sure about what was going on, but it didn’t seem like anything was too bad. I continued to go about my day. He said they had decided that they were probably going to admit her to the medical floor there at the Midland hospital. They were worried that there was something going on with her stomach. A little while after that I got a call from him saying that they didn’t think they could treat her in Midland and would be sending her to a children’s hospital in Lubbock. About 30 min after that update I spoke to a nurse who was taking care of Oli in the ER. Her dad had told the nurse that she usually goes to Dell Children’s hospital in Austin and wondered if they could transfer her there so she’d be closer to home.

The RN got on the phone and very candidly said to me “Look, she’s really, really sick. I’m not sure she would make it all the way to Austin.”

Not make it to Austin? As in she may not survive long enough to travel to Austin?

No, no, no, no, no. That can’t be what she meant. No way.

Did I ask her that question? What do you mean “she may not make it?”

No. No I did not ask that question. Why did I not ask that question? Why did I not hold her hostage on that phone and demand that she tell me exactly what was wrong with my daughter? Clearly I was not getting the full story. I don’t think her dad understood what was going on with Oli and he definitely could not relay and kind of useful medical information to me. It was like I was stuck in a dark room fumbling around, unable to find the light switch, but unwilling to ask the person with a flashlight for help.

I’m sure deep down I knew what she meant, but clearly at this point I was so far into my denial I just said “Ok. Get her to where she needs to be NOW!”

I also tried to rationalize that statement by telling myself that the nurse was just over reacting. I thought they were probably just freaking out because she was a kid, plus she has special needs so they’re just super uncomfortable with her and wanted to get her out of there and somewhere else close, fast.”

I still had no clear idea what was wrong with my daughter. No one was giving me any ideas other than her stomach was distended and hard and she was “really, really sick”. I think it was at this point in time that I began thinking it was a bowel obstruction and sepsis. I felt my own heart rate and blood pressure raise as I text her dad “Did they mention anything about a bowel perforation?” A bowel perforation is a life threatening emergency and is where the contents of the intestine spill out into the abdominal cavity causing massive infection and requiring immediate surgery. A bowel obstruction can ultimately cause a bowel perforation if not treated. He replied “no bowel perforation”. That was good. My heart rate slowed a little and I felt relieved that at least she didn’t have that. At the time I was thinking a perforation would be the worst case scenario. I replied “Then what made them decide to transfer her out rather than just admit her there?” He responded “They didn’t feel like they had the expertise to handle her.”

Yep. I was right. They were just uncomfortable and trying to get her out of their ER. It’s not that bad. My heart rate and blood pressure immediately went back to normal and I continued stringing lights around my trees and blowing up inflatable snowmen and Santa Clauses.

And off they went. They wanted to fly her from Midland to Lubbock but there was no flight transport available. I didn’t know that until later. There are so many things that I didn’t know until later.

My very, very sick little girl then had to ride 2 hours in the back of an ambulance. By the time they got to the ER her heart rate was 200 and her blood pressure was 170/110. Her dad called me when they got to Lubbock and said that nothing was really happening, they were still waiting in a room. I kept thinking that I was missing something. How could the staff see her vital signs and not do anything? I was still so confused. I think that confusion kept me from panicking. Surely if she were that sick and if those numbers were correct the ER staff would be responding to her, not making her sit in an ER room alone with her dad. That can’t be right. What was happening? Maybe I should wrap up outside. I began lugging the rest of the boxes of Christmas decorations back into my garage and traded them for a suitcase.

Finally at 4:53pm I got a text from him saying “Dr. Relves (a pediatric ICU doctor) is handling the business. I’ve got 15 people in here and her heart rate has dropped 50 points. We are having to intubate her to treat.”

Intubate her? Wait, what? We went from a possible virus, a swollen tummy, maybe a hospital admission and then an overreactive nurse all the way to “intubate her”. The room went fuzzy. What was happening?

After I read that last text my brain went into overdrive and I literally just started throwing my toiletries and clothing into a suitcase. I had to get there NOW.

I quickly sent him a response. “If you get to a place where I can be updated by a doctor I’d really appreciate that. I don’t have a clear clinical picture of what is happening.”

What was happening to my sweet girl?

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I know I’m okay as long as I don’t make pancakes for dinner.

21 Oct

“Close the door Michael. I can still hear them.”

Michael obediently pauses Zelda and walks over to the lightweight door, closing it on the sounds of my parent’s argument.

“Now turn up the sound on the TV and just ignore them.”

Michael again complies without protest, spinning the volume control on the old 32” TV. He picks up the remote control of the Nintendo and scrunches up his little face in concentration.

He is probably about 7 years old.

I am probably about 10.

This is not the first time we have performed this ritual.

It will not be the last time either.

About an hour later my mother knocks softly on our bedroom door.

I get up, reluctantly pausing Link mid stride across his never ending quest through the green maze, and open the door.

Michael looks at me worriedly.

I look up and into my mother’s red rimmed, glassy eyes.

I see the tears still pooling in the corners of them just about ready to spill over. Just about, but not quite.

My mother will rein them in, sparing me from having to wipe them from her cheeks.

My mom will pretend to be strong for me.

Even though I know she’s not.

Even though I know that she has once again been defeated.

“Are you okay?” I ask although I already know what her response will be.

“Yes. I’m fine.” She answers in a voice that is too high, too cheery, to be anything but fake.

It is only now that I notice that she is carrying two plates in her hands. She lifts them up towards my face.

“I’ve made pancakes for dinner!” She says this like someone would announce that they are going to Disneyland.

She says it like she’s just given me exceptional news.

I’VE MADE PANCAKES FOR DINNER!!

“Thanks mom.” I respond quietly. I try to pretend that this is good news. Pancakes. I love pancakes and so does my brother Michael.

I know what those pancakes mean though.

My eyes cast around her to the doorway and towards the silence that sits awkwardly beyond it.

My mother is confused at first by my sad expression. Then she meets my gaze with eyes pooling with tears once again.

She knows that I know.

She knows that even though I am only 10 years old, I now understand that pancakes for dinner is never a good thing.

Pancakes for dinner means that my mother is not okay.

I’ve kept that memory since childhood. I still associate pancakes and dinner as a very bad thing. I’ve had my own children now. Three of them. And guess what?

I’ve made them pancakes for dinner a few times.

Very few times, but I have and I cringe at that memory too.

I told the young child me that I would never do it.

I would never turn those light, fluffy, syrupy plates of deliciousness into a dripping plate of sorrow…but I have.

I have fought against instinct and upbringing and tried to swim against the tide that tries to push me in the direction of my mother’s life.

To no avail.

Points in my life have begun to mirror my mother’s despite my every attempt to fight it.

Of course it doesn’t all look the same. But a lot of it does.

More than I’d probably like to admit.

And so when my life falls apart and the tears stream down my face and my sobs threaten to choke me… I do what feels right. What feels comfortable.

I make pancakes for dinner.

That’s how I’ve come to measure my sadness and my coping skills.

Am I making pancakes for dinner?

If I am?

It’s bad.

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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.

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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.

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When the sun goes down and the rainbows disappear.

18 Jun

It’s almost time for Oli to start summer school. She goes for 4 hours a day, 4 days a week, for 5 weeks. She has gone to summer school every year since she began going to school at 3 years of age. ESY (extended school year) is for special needs kids who have shown regression over the Christmas break. If you regress, you go to summer school.

It’s a win, lose situation for us. It’s great that she gets to go because summer break is so long, I don’t want her losing any of her skills, and she really likes school. It gives her more of a structured day and a schedule, which she does well with. It’s bad because it means that she isn’t doing as well as some of the other kids. I guess it makes me a little sad because she NEEDS it. Although, her teachers have told me every year (the 3rd year now) that they are qualifying her based on the emergence of critical skills. Walking and talking. I’m not sure if these really were emerging at the time of her evaluation though.
When they qualified her for ESY this year she wasn’t talking again yet. She didn’t start that until a few weeks before school got out. They agreed on ESY sometime after Christmas. Her walking skills have improved over the last 3 years since she took her first steps. I wouldn’t classify this as emerging however. She’s stronger now, but her walking isn’t that much different than when she was 4 or 5. I think it’s mostly a balance problem. I’m hoping that one day her balance will get better. It has, little by little, year by year, but it’s a slow process.

All that being said…she gets to participate in summer school. With all the other kids who NEED to be there. Who cannot afford to have a regular summer vacation like all of the other kids. This is the part that is hard to swallow. She isn’t like the rest of the kids. She never will be. This is both wonderfully special and woefully heartbreaking.

I try to be positive and upbeat. I focus on what she can do, how far she has come, and the progress she’s made. I try to focus on all of her abilities and not her disabilities. But I would be a terrible, fake, fraud if I told you that I never get sad or mourn her struggles. If I told you that I never get angry at the injustice and unfairness of her multiple disabilities.

Here’s part of the real, honest truth. I get sad. I get sad a lot. Not every day. Not even every couple of days, but it happens. When she’s having an especially hard day and the meltdowns become epic, and the tears become frequent and she refuses to walk and she doesn’t speak a word, and it feels like the day will last forever, I remember exactly how much she is NOT like other children. I am faced with how different she is. I am reminded of what makes me a different kind of mother. I’m not very fond of those days because I REALLY want to be like you. Most days I try to pretend that I am. Most days I treat Oli like she is just like your child. And then we have those days where I just can’t pretend and I can’t ignore the fact that she’s not.

It’s during those days that it becomes hard to chronicle our story and write about our journey through our unique life. I mostly wrote about the positive and people always love reading about the warm fuzzy encounters we have. The pink cloud moments where everyone is smiling and life is full of rainbows and roses. Everyone knows though, this is not always the reality of our situation.

No ones reality looks like that all of the time. So sometimes I’ll write about the hard times, the sad emotions, the tears, and the fear…in the hopes of portraying an accurate account of her life. Of my life. I’ll write it knowing that people will worry about me, they will worry about her, they will question my strength, they will be afraid to offer words of comfort, they will offer too many, they will feel sorry for us, and they will be glad that they don’t have a special needs child. I will write it knowing that some people will not want to hear about this part, they will refuse to read about the struggles because life is easier when you don’t know about the difficulties of it all. Life is easier when you ignore the pain and only celebrate the happiness. I know. I was like that too. Some days…I still am. People may choose not to read this part, but hopefully… they will come back. Hopefully, people will continue to be inspired and hopeful about my daughter even when I describe my hard days. Even when I talk about my pain and disappointment.

Because this is our life. We live life on life’s terms through the good, the bad, the smiles, and the tears.

And I really wouldn’t want it any other way.

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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.

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What is it like to have a special needs sister? A 7 year old gives his opinion.

13 Jun

I wonder all the time what it is like growing up as the sibling of a special needs child. My 7 year old son, Kekoa, opened up and answered some questions about life with Oli.

What is the very first memory you have of Oli?
-“I think the first thing that I saw about Oli was that she was blind. Well that, she had ummm…she had no eyes and that was kind of creepy at first.”

Do you remember her getting her first pair of real looking eyes?
-“Ummm..I think I remember. I just saw online that she had the clear ones first.”

What do you want people to know about Oli?
-“I want people to know that just because she doesn’t have eyes, doesn’t mean that she doesn’t know what you’re saying. She understands whatever you say. You should talk to her normal.”

How does it make you feel if people stare at her or say mean things to her?
-“It makes me feel sad. It makes me feel like I’M the person being bullied by those people because she’s my sister.”

What would you say to those people?
-“She’s a normal person. She just doesn’t have eyes.”

What does it feel like to have a sister with a disability?
-“I’m just worried about people being mean to her. Sometimes I worry about her falling down and getting really hurt. I worry about her having to go to the hospital.”

Do you remember the first time Oli had a big seizure and had to be taken to the hospital by ambulance?
-“Yes. I remember daddy telling me to go upstairs. I remember wondering if she was going to be okay. Or was she not. I was just really worried that she wasn’t going to be okay that time.”

Do your friends ask you questions about Oli?
-“Yes. A bunch of times. They ask me like ‘Can she blink?’ I say yes. ‘Why does she have fake eyes?’ I say that people will accept her more because she looks like everyone else. I don’t think it’s very important to look like everyone else because everybody has differences and God just made us that way. That’s the way He wants us to be.”

Are you excited that she started talking again?
-“Yes. Very excited. I think that since she started talking, she’ll start doing other stuff too.”

What kind of stuff do you want her to be able to do?
-“I want her to be able to walk. To have lots of friends. I want her to be able to like do normal things like everybody. I want her to be able to play with me.”

Is it hard at home to have a special needs sister?
-“Sometimes. Because it’s hard to do stuff and concentrate when she’s crying.”

Is it hard because she has lots of therapy and doctor appointments?
-“Well no. Not really.”

Is it hard because it takes more time away from you, for mommy and daddy to help her?
-“Yes. You guys spend more time with Oli, helping her do things, than Ginger and I do. You guys just know more about her than we do. I like to help her. I like to help her walk. I like to hold her hand.”

If you had one wish for Oli, what would it be?
-“I would wish that she would be able to see. And that’s it. I just wish she could see because it would be easier for her.”

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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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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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I am a child.

20 May

Oli is 6 years old, blind and autistic. Her autism has left her non-verbal.

I know that I don’t really know what she thinks about, what she dreams about, or what she would want to say.

But because I am her mom, I get the honor of speaking for her until she finds her words.

Here is what I think Oli would want you to know about her.

“Hi! My name is Oli. I know that my mom gets this look from strangers when she tells them about me or when they meet me for the first time. She calls it “the look”. I don’t know what “the look” looks like because I can’t see it, but I know that it makes my mommy sad.

I know that it makes her sad because I can hear it in her voice when she talks about it. I can feel it in the way her shoulders sag when she thinks about it. And I can taste it in the tears that roll down her face when she cries about it when she thinks no one is looking. I’m looking. I’m always looking because I know my mommy better than she thinks I do.

I know that “the look” hurts my mommy’s feelings.

I also hear her talking about it with my daddy. I hear her tell him that this look means that people feel sorry for her. That they feel sorry for me.

Most importantly, I hear her tell daddy that people don’t need to feel sorry for her or for me. She also tells ME that I don’t need to feel sorry for MYSELF. That there is nothing wrong with me. I just do things differently than other children.

Despite our differences, I’m still a child.

I want you to know that the way I am… is not wrong. That the way your child is…is not right. It’s just different.

I’m here to tell you that you don’t need to feel sorry for me. You don’t need to pity my family. I am fine. I will do what I will do when the time is right. My parents will push me and advocate for me. They believe in me and I will do everything that I can in this life. My life is not sad. My life does not deserve your tears. It should be celebrated. Please don’t be sad for me.

I am only a child. A child with special needs yes, but still a child.

I know that I’m not the same as you. I know that there are things that I do that might seem strange. I don’t understand what they are, nor could I tell you why I do those things. All I can tell you is that I have to do them. That is just part of me.

I have a wonderful life. I live life to the fullest and I enjoy most of every day. I have good days and bad days just like every other 6 year old. I cry when I don’t get my way. I smile when I do. I throw tantrums when I don’t get what I want. I give kisses and hugs when I do. I don’t listen when I don’t want to do what you’re telling me to do. I listen when I do. I giggle. I test boundaries. I play. I am a child.

I am my parent’s child.

They are proud of me. They love me. They are not ashamed of me. They don’t feel sorry for me.

Neither should you.

Mommy and daddy bring new people into our house sometimes. New therapists, friends, and family I haven’t seen in a long time. I can feel their tension. Sometimes they don’t know what to do with me. How to touch me or talk to me. How to play with me.

I know that other people don’t understand my life, but you don’t need to feel uncomfortable around me. You don’t need to be frightened or nervous. Interacting with me cannot be done wrong.

Just remember…

I am a child.

I may be different than your child, but I am still a child.

I’m just Oli.”

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