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My heart is a flood of tears.

6 Feb

“Have you ever considered that he might be on the autism spectrum?”

The air left my lungs.

My heart dropped to the floor.

My world stood still, and silent, and dark.

Again.

The psychiatrist sitting in front of me looks at me with her clear, blue eyes.

Her pixie face is soft and caring.

She asks the question with compassion in her voice.

This was the polar opposite of the encounter that I had when Oli’s diagnosis was dropped into my lap.

Autism.

Kekoa?

Autism.

No.

Wait.

Maybe?

Wait.

No.

No.

Maybe?

I hadn’t even thought of it until right at that moment.

That brief moment.

It was 10 seconds of my life that might potentially change the course of my days from here on out.

My life is made up of these little moments.

I hadn’t considered it at all.

Until now.

Until I started looking at him with a different set of eyes.

Now I am seeing him.

The obsessions.

The social awkwardness.

The demeanor.

The sound sensitivity.

Maybe.

“What do you think?” There’s that quiet concerned tone again.

In my opinion, all major medical diagnosis suggestions should come from psychiatrists.

Should come from this psychiatrist.

She’s fantastic!

There’s no judgment.

There’s no doom and gloom.

There’s only presence.

“I don’t know. Do you think?”

My mind is half in the room with her and halfway through his future, playing out every possible reality.

Predicting what a diagnosis of autism would mean for him.

“We may be looking at more than depression and anxiety here.”

She says it bluntly.

She says it without complete conviction.

She is throwing out another possibility to explore.

She isn’t diagnosing. She is suggesting that I further investigate.

If I want to.

Kekoa was diagnosed with a major depressive episode and anxiety a few months ago.

After he had changed schools.

After he began being bullied at school.

After his dad had moved out of the house and to another city.

After we got divorced.

After the world as he knew it, fell apart and began to feel empty, and dark, and cold, and painful.

After he lost all of his joy and happiness.

After he began to loose hope. Hope in himself. Hope in the future, and the present. Hope in the people around him.

I watched my happy, energetic, 9 year old boy loose himself in a tumultuous sea of sadness, where he was beginning to sink because he could no longer swim.

“I may not cry on the outside, but my heart is a flood of tears.”  These were the words spoken by my son tonight at his therapy session.

Depression.

Anxiety.

And now possibly autism.

As I rode home, with my baby boy sitting next to me in the car, I began to process the information that I had just been given.

And I began to feel the exact meaning of the words just spoken by Kekoa.

I knew exactly how he felt because I too may not cry on the outside, but my heart was a flood of tears.

I was so sad.

I was so angry.

I began to question and feel everything that I felt when Oli was born.

Why? Why my child?

And in an instant I remembered the answer.

Because it’s the same answer that I found with Oli.

Why not my child?

We are not special here.

We are not invisible, indestructible, or impenetrable.

This is life.

There are no contracts, agreements, or guarantees. We get what we get and must accept what is.

Not what should be, or might be, or could be.

What is.

I know what to do with this.

I know that any diagnosis will never quantify, explain, or define my child.

He is who he is and I love who he is.

I will allow myself a few moment of sadness. A few moments of anger.

And then I will move on.

I will move on to tomorrow and do exactly what I am meant to do.

Which is to help my son.

My heart may be a flood of tears tonight, but I see the sunshine in tomorrow.

The page that I’m on

11 Dec

Some days I look at her and I can’t believe how lucky I am.

Not everyone has an Oli.

Some days I look at her and I can’t believe how lucky she is.

She’s not sick. She’s not in the hospital. She’s not hooked up to any machines. She’s alive.

And some days just the fact that those are my blessings, makes my stomach turn.

It still feels like a rollar coaster ride some days. A lot of days. But not as many as before.

I can look at her now and most of the time not compare her to her friends. To her classmates. To the kids who were supposed to be her classmates.

Every once in a while I’ll get a glimpse of the little girl who I thought she would become.

Sometimes it’s in a photograph. Sometimes it’s in a dream.

Every time it makes me lose my breath.

Like someone just punched me in the stomach and I can’t quite get enough air into my body.

I saw a picture once of Oli portrayed in a book as a ballarina. She was smiling at the camera; looking at the camera. She was beautiful in that picture. Such a perfect little seven year old girl, dressed up in a tutu, posing for a picture. I can’t look at that page in the book. That’s not my Oli and if I start imagining and pretending it is… I will grieve for the loss of that little girl all over again.

I don’t want to lose that little girl all over again.

And some days… I just do.

Some months she will progress so much. She will speak a few words, take a few steps, stop stimming so much… and I will begin to believe that she will make it. That she will become the little girl that grazes my dreams every once in a while.

But then she’ll stop.

She always stops.

And then she’ll go backwards.

And then I lie awake at night and wonder what I did. What did I do? Did I not praise her enough? Did I not do enough at home? Was there some therapy that I should have looked into? What would have made the difference this time? What could I have done to propel her forward? To keep her where she was and not keep falling behind.

I think about that for a few days and then I remember.

This is Oli

This is who she is.

At some point after she was born I stopped agreeing with other parents who told me that she was going to be okay. And by “okay” they meant that she would catch up to her peers.

I think that maybe they believed it.

I probably believed it too.

Or maybe we were all just trying to make me feel better.

Now, no one tells me that she will catch up. No one tells me that she will be okay. At seven years old, no one believes it anymore I guess.

I miss how it was before.

Tonight I sit at my computer trying to figure out how I’m going to schedule ALL of her therapy sessions that she gets now.

Occupational therapy

Physical therapy

Speech therapy

Music therapy

Massage therapy

Aquatic therapy

Hippotherapy

I start to question just what it is that I’m doing?

What am I doing?

Are these helping her? Are they helping us?

What are we doing?

I fight and I fight and I fight.

I research different therapies and teaching techniques. I go to ARD’s at school and fight for more services.

I fight for her home therapy sessions.

Her home PT cut her therapy in half.

And I fought.

And I lost.

I lost that one. She doesn’t get as much home physical therapy as she used to and I’m pissed.

Don’t they KNOW how much she needs it?! Don’t they KNOW that she is almost walking independently? Don’t they KNOW?!

Yes. They probably do know. They probably know what I am reluctant to admit.

That all of these things are just not helping like they used to.

That Oli has come as far as she will come right now.

So what do I do?

Do I give up? Do I cut back?

Do I sit and hold and hug and kiss my daughter more? Do I do all of the things that normal families do with their children if they’re not in hours and hours of therapy sessions?

How is this affecting my other children?

What does Oli’s schedule do to them?

They never complain. At 9 and 4 years old, her brother and sister have not once, ever complained.

If you ask my son if he ever gets jealous of Oli’s attention, he just looks at you like you’re speaking another language.

Trust me, I’ve had this conversation with him.

“What do you mean mom? Oli needs help.”

But as their mother, at some point, I have to stop and consider us as a whole family supporting each other.

Not all of us supporting Oli.

But how can I look at this amazing little girl and not offer up the whole world for her?

How can I look at her and see just how far she really has come and not want to do more?

How can I get access to all of these wonderful therapies and say no?

What if it helps?

What if it works this time?

What if she begins to walk and talk?

What if I stop and she never does? Was it because we didn’t do everything?

I’m not sure, at this point, that I can live with the thought of not doing everything.

So…If you ask me what it feels like to be a special needs parent I will tell you this,

It feels like you are reading an amazing story with excitement and joy and suspense and so much love. You get to the last chapter because you just know that it is going to be the best ending ever….

And the entire last chapter is missing.

It’s just not there.

You have so many questions. Did she speak? Did she walk? Did she go to the prom? Did she have a best friend? Did she ever play with her brother and sister or learn to ski or go fishing or read a book or even learn the alphabet?

You don’t know.

You’ll never, ever know.

Until one day you stumble upon an old, threadbare copy of that same book sitting on the back shelf of some dusty, second hand book store.

You pay $1 for the copy and rush home to read that final chapter, only to realize…

That the ending never really mattered all that much.

It was the journey to the end that is what made the story.

So that’s how we live here.

We live the journey and not the destination.

I live my life one page at a time.

I live my life knowing that the last chapter is missing.

And I try to make the best of the page that I’m on.

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.

My Special Needs Mother Hat

25 Feb

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I would forget that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. I no longer try to hide my hat. I walk out of my house each day with my head held up high, proud to show off my journey with my special needs mother hat.

As different as this hat was from the mother hat that I began with, it has begun to resemble the first quite unexpectedly. Yes, it still has all of those rips and tears. It still has those strange flowers on it, but the basics of the hat…are like the first.

What holds one together, holds the other. The hats are both made from the same fabric and are sewn with the same thread. What makes my special needs mother hat strong, is what made my mother hat strong to begin with.

The love I have for my children.

The two hats are not all that different.

Some days my special needs mother hat becomes too heavy or feels too broken to wear. I just can’t pick it up.
So instead? I pick up my first hat.

My mother hat.

As long as I remember that I am still a mother… I know that it’s okay. I know that I don’t have to feel guilty if I have a day or a moment that I just don’t want to wear my special needs mother hat.

When I feel overwhelmed, overtired, overworked, underappreciated,…I just remember that sometimes?

It’s okay to just be a mom first.

Where was my key?

9 Jan

I used to read blogs and find links on the internet after Oli was born about children with special needs. More specifically I looked for those words describing BLIND children with special needs. Blind. They had to be totally and completely blind or I couldn’t relate. They couldn’t be JUST blind either. They had to have other disabilities. Other delays, or I couldn’t relate. The children couldn’t be too much older, they couldn’t live in another country, they couldn’t be able to walk or crawl… or I couldn’t relate.
Looking back on it now, I just couldn’t relate to anyone.
I would find the differences in the people, circumstances, and situations so that I was left standing utterly alone, unable to find comfort in any of the sentences that I read on the screen.
Reading those words and seeing the hope and the progress as the parents of these children reveled in their accomplishments, left me yearning to find the key that opened the door to their secret world.
The world, in which people who believed in their special children and accepted them, lived.

Where was my key?

How do you learn about all of the differences in your child, how do you sit through evaluation after evaluation of disappointing prospects and yet still find the key to acceptance?
How do you get to that place?
I sought out those stories of the milestones these children met, delayed yes, but nonetheless met, and wondered if my girl would ever do any of those things.
I wasn’t sure that she would.
I tried to compare her to similar children (when I found them which was rare) and felt defeat after defeat as they surpassed her by miles.
They learned to crawl and walk and talk and when my daughter reached that same age? She just didn’t.
The remorse and regret and guilt of all the possible things that I could have done different or better or faster… It just crushed me.
When she didn’t do the things that I thought she should do, I felt like such a failure as a mother.
I had failed her.
I hated that feeling, but I just couldn’t make it disappear.
I met lots of doctors who, when asked questions of what she would do, responded with shadows of “might not”‘s.
I also met lots of therapists who replied to the same questions with cheerful “might”‘s.
I tended to drift and focus more on the might nots.
When I would try to discuss my fears of the future with people, and I did so rarely, they responded as people do.
They told me to believe that she would grow up normally. They told me that my fears were silly and that I shouldn’t think such things.
They told me to look on the bright side.
Easy to do when it’s not happening to your child.
In truth, they were well meaning people with good hearts who wanted to help me but were completely
clueless.
Sometimes it’s hard to talk to people like me.
People who, when in such a place of darkness, find fault with every well meant comment or upbeat possibility.

Where was that key?

As time passed I just stopped talking about it. I didn’t want to be the downer of the conversation wallowing in all of the shame I felt. The self pity, that I didn’t see as self pity, but most definitely was.
I couldn’t talk about the guilt.
Who do you tell when you have feelings like that?
God?
Ummmmm…. No.
God and I were definitely NOT on speaking terms after Oli was born.
How could HE let this happen to a child? To MY child more importantly.
My husband?
No.
I felt like it was all my fault and I couldn’t admit that to him.
I guess I felt that it was his fault too.
Like this was something that we had done to her. Something that shouldn’t have happened.
I couldn’t tell him that.
My friends.
No. We already talked about that up there^^.
My mom?
Nope. Not her either. Too much guilt. Too much shame.
What had I done to her very first granddaughter?
Sooooo… that left?
No one.
Except it didn’t really.
It turns out there were a few people that I would meet along the way that would help me to find my key.
People who had been in and out of my house since this whole thing happened.
People who saw mothers like me and children like Oli every single day.

They were the therapists who worked with my daughter.

Not all of them were warm and cuddly.
Not all of them were inviting.
Not all of them I could open up to.
But some of them… I could.
Some of them had a compassion and a keen sense of understanding for a situation that they had never lived.
Some of them didn’t even have children of their own!
But it didn’t matter.
For some reason they had the right tone of voice, they said the right words, they were silent when I needed them to be, and the outer shell that I had created began to dissolve.
It turns out that I met a succession of these therapists in the exact right time in my life where I was able to hear them.
I was able to be honest about my fears and my wounds and as I listened they began to heal me.

In the beginning I guess they couldn’t help me because I was so engrossed in putting on a good front. I was so focused on pretending to be strong that I never let my fear seep through the words of strength that I wove together.
I didn’t feel like I could tell anyone let alone a stranger!
I ended up learning that sometimes a stranger is a heck of a lot easier to talk with.
Especially a stranger that isn’t really stranger because they come into my house every week and watch me fold laundry (including my underwear that likes to fall out of the basket at the most I inopportune times!)
They watch my children bicker and me burn the dinner.
They watch my 3 year old run out of the bathroom naked from the waist down and listen as she recounts less than savory tales of our household.
Basically they just see us…as us.
They see me…as me.
Eventually it becomes very difficult not to open up to someone who sees you as you are.
It might have started with a simple question.
“So how are you doing with all of this?”
Followed by a quiet stare as I repeated my all too well known response to that question.
“Fine.”
It might might have started with that stare that bore through my soul.
That stare that unequivocally meant
“No really. I know you can’t be fine so how are you?”
I don’t really remember, but I know it started with them.
It started with them showing kindness and empathy and it started with a trust that developed between us.
As I allowed the door of communication to be opened, as I began to finally relate with people who understood me, they began to lead me down a path towards finding my key.
My key to peace.
My key to happiness.

My key to acceptance.

…to be continued.
First part of an upcoming speech on communication between team members.

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!!

stock-vector-bang-crash-54901102

Or maybe you’ll land a bit more softly.

Soft_Landing_by_Domo__Kun

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

SoftLanding-300x203
(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:

emes5

emes6 (1)

emes7

emes8

emes10

emes9

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.

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