On This Apraxia Awareness Day.....

...I am going to celebrate!

Why, you ask?
Because I refuse to allow apraxia to define me or my children.

We are NOT defined by apraxia!

On the contrary, we define the disorder.

We have been living a life with apraxia either three steps ahead of us or just one teeny tiny step behind us for 9 years.
It's the monkey on our backs.
It's the elephant in the room.
It was the nightmare that made my heart race as I lay in bed at night.
It was the prayers I would say every night (and still do!).
It was the angst in my heart when I watched my child play alone in the park when surrounded by other children.
It was the shock and dismay when I realized that I had two children with the disorder.
It was blaming myself for giving this to them.
It was over-analyzing my pregnancy...what I ate...what I did...the epidural I requested.
It was me wondering if I should have never nursed my babies.
It was me wondering if I should have nursed longer and not bottle fed them.
It was the tears I shed at IEP Meetings over and over and over.
It was the fight I put up with insurance companies.
It was the decision to end relationships with therapists because even they "just couldn't get it".
It was the constant stares in stores.
It was the pathetic looks from strangers.
It was the mastering and translating of a new language.
It was learning sign language.
It was homework at the age of 2.
It was homework at the age of 3.
It was homework at the age of 4.
It was drills and sounds and PECS and Boardmaker.
It was the 1,000's and 10,000's of dollars spent on speech therapy...5 days a week.
It was self-contained classrooms and labels and special education.
It was losing old friends because they couldn't cope with your childs disability.
It was finding out who our real friends were and still are.
It was networking and blogging and Twittering and Facebooking.
It was moving on.
It was our life.

Today, May 14, 2013.....is Apraxia Awareness Day.
I know what it is.
I know it's neurological foundation.
I know the signs and symptoms.
I know that I can write a book about this road I have traveled.
I know how it robbed my children of typical babbling and speech and language production.
I know how it affected them socially.
I know that I don't need a day like today to remind me what apraxia is.

Or was.

Because personally, for me and my family, apraxia is not in charge of our lives like it used to be.
We battled and fought for 9 years.
And now we are one step ahead of the apraxia beast.
It is still the monkey on our backs, but the load is not as heavy anymore.

We don't cry at IEP Meetings anymore.
We don't fight insurance companies as much anymore.
We don't sit in therapy waiting rooms five days a week anymore.
We don't stand for those pathetic looks from strangers anymore.

We still pray.
We still cry.
We still stay awake at night....wondering the "what-if's".
We still have broken hearts, but they are becoming fewer and fewer.
We still educate others.
We still network.
We still do homework.
We still do drills and sounds and PECS and Boardmaker because they make our lives easier and, frankly, we love them.
We still do special education but we also mainstream.
We have newer, better friends.
We have awesome therapists.
We still network and blog and Twitter and Facebook.

And we celebrate!
We celebrate the perfect /t/ sound!
We celebrate general education!
We celebrate handwriting!
We celebrate singing!
We celebrate decisions to not start Kindergarten because everyone else is!
We celebrate BIP plans (privately, of course, because her speech is getting sassy now!)
We celebrate the little milestones because they have FINALLY been reached!
We celebrate daily!
We celebrate the child as a child and not the child with a disability!
We celebrate life!
We celebrate love!
We celebrate our dedicated therapists!

So on this Apraxia Awareness Day.....we CELEBRATE!
Because 9 years ago, the road was so long and so dark.
And today, that road behind us doesn't look so bad anymore.
But we will never forget what apraxia did to our family.

We are stronger.
We are resilient.
We are passionate.
We are fighters.
We are hard workers.
We are dedicated.
We are blessed

We are a tough family....and with family, anything is possible.
And families celebrate!

Happy Mothers Day!!

Wishing you a beautiful day!!!

Meet Apraxia Dad!

I am the blogger in the family.
The loud Mom.
The spitfire.
The advocate.

Dad isn't as loud, but don't let that fool you.
He the quiet champion.
The quiet cheerleader.
The quiet(ER) parent at the IEP meetings and Parent Teacher Conferences.
He takes it all in and digests it.
He's the "ying" to my "yang".

We balance well.
I have always fought the insurance companies alone and had no problem with that job.
And I still don't have a problem with it.
Fighting for my kids is an adrenaline rush for me.
It's my drug.
But now Dad is stepping into the ring.
I think United Healthcare needs to be warned.
Because when Dad talks, people listen.

And nothing is more awesome than a loud Dad fighting for his kids.

Go, Dad, go!

Ready for Round 2

So UHC denied our claims.

The illiterate Customer Service rep couldn't pronounce half of the words on the pre-designed template that he had to read.

It's "congenital", you dunce.
Not "con-neg-ital".
Guess he did poorly on his report card when it came to English and grammar.
And if they graded on manners, I'm sure he flunked that class, too.
Oh, how typical.

So Round 1 is done.
Did they think I would run to my corner and cry and give up?
Take off my gloves and head for the showers?

Obviously, UHC hasn't read this blog.
Maybe they need to start from the beginning....from page one.
And maybe they should get to know our lawyer.

Ding.
Round Two.

Accountability

Nowadays, when you call a 1-800 number for customer service, you are told that "this call may be monitored for quality assurance purposes".

And you are typically on hold for a few minutes after pressing 1 then 4 then 99 to get to a real person.

And during that hold time, you are probably reminded at least 3 times about the QA bull. Over and over and over.

Well, I have an awesome idea!

Since they are being recorded for QA purposes, those calls are saved.
Someone must have the boring job to listen to them in the QA department, dontcha think?
And someone must tell the employee on the phone call during their annual employee evaluation "Hey, next time you talk to a customer, you should say ABC instead of XYZ, alright?"

Makes sense, doesn't it?

So if I called United Healthcare at the beginning of January and confirmed that codes and coverage were in fact true and that if my provider did the same thing (twice) and was told that specific codes in question were truly covered and approved codes......and those calls were being recorded for quality assurance purposes.......

You are where I am going with this, don't you?

Well, don't you think there should be some accountability on UHCs part for talking out of both sides of their mouths now?

For quality assurance purposes, of course. Because that's my point here.

Get it, UHC?
Lets talk accountability, shall we?

Happy New Year!

My 2013 wishes for you all....

 

...that there will be tons of speech and language explosions!

 

...that fine motor skills will finally start to fall into place!

 

...that social skills will come easily for our little ones!

 

...that physical issues will not seem so physical anymore!

 

...that handwriting will truly be without tears!

 

...and that you are blessed with more surprises than you can imagine!

 

Wishing you all the best for 2013!

I Needed To Hug A Teacher Today

It has been four days since the news broke, and I still cannot wrap my heart and my mind around what happened.

26 dead.
6 teachers.
20 children.

Children, for God's sake!

Innocent souls with pure hearts and innocent minds.
Oblivious to the "bad guys" that roam this world.
In a building that we all assume is one of the safest places to send our most precious gifts
Taken too soon and given wings more magical than their little imaginations could dream of.

I am sad.
I am angry.
I am fearful.
I am speechless.
I am weak.
I am a Mom.

This could happen anywhere.
At anytime.
And it did.
And although it happened over 800 miles from my home....over a 12 hour car drive away...it feels as though it happened in my own neighborhood.

Oh, those sweet, sweet souls.

 

Today was the first day that I drove my children to school since this horrific event last Friday.

I was scared.

I wanted to keep my two most precious gifts in my life that God gave me in my house with me today.

But I knew I couldn't.

I knew they needed to maintain their own "normal lives" even though I was struggling with my own.

I can't keep them safe from every bad guy out there.

So we went to school.

 

As I approached the street of my son's school, the sinking feeling in my stomach got worse.

My hands were shaking as I held the steering wheel.

I was nauseous.

I was bouncing back and forth between hot flashes and cold sweats.

Naive to my feelings, my two children sat in the backseat and listened and sang along to Christmas carols.

I wish I was that naive to the world around me.

I sat in the carpool drop off line and waited for directions to pull forward.

I watched young, innocent children hold the hands of their teachers and skip into school.

My own son was wrestling with his back pack and couldn't wait to join in!

 

"Mom, we are having a jammie day at school today with popcorn!"

 

Yes, my son was wearing his Spiderman jammies to school today.

They were celebrating a class accomplishment today with PJs, popcorn and a movie.

 

I don't remember driving anymore until I realized that my car was stopped and my son was asking for help to get out of the car.

I was numb.

As I got out to walk him around the car to the waiting teacher, it happened.

 

I always kiss the top of my son's head and tell him to have a good day and that I will see him soon and we will play.

Did I do that?

I don't know.

All I remember is walking up to that teacher and hugging her.

 

And I cried.

Not just a misty-eyed cry.

I cried those big, huge, fat tears.

And the only words that I could whisper to her were "I needed to hug a teacher today."

And she hugged me.

She said something to me, but I don't know what it was.

 

(For all I know she was telling me to stop hugging her and that she was going to call security!)

But I doubt that.

 

And I am sure that I was holding up the carpool drop off line, but I don't care.

Because I needed to hug a teacher today.

And that sad, angry, fearful, speechless weak Mom that I was five minutes ago was now gone.

 

Because I needed to hug a teacher today.