Speaking Up for Those Who Can't Speak for Themselves.

 

Today is a day I've been excited for for weeks

It's the First Annual Apraxia Awareness Day!

 

As I've said before Kolton was diagnosed with Childhood

Apraxia of Speech a few years back.  Basically this means

that he understands perfectly what anyone says to him,

he just can't always make the words come out right for a response.

Like sometimes when you know exactly what you're

trying to say but can't make the words make sense to whoever

you're talking to--now imagine that feeling all day everyday.

It would be pretty frustrating, right?  This is what Kolton and

countless other kids with Apraxia have to deal with

each and every day.

 

Thanks to some excellent Speech Therapists (one in

particular I can't wait to get back to in San Antonio

-shout out to Ms. Hofmockle) Kolton has come so far

in the past three years we've been dealing with

Apraxia.  And as his Mommy, I'm so proud and excited

for each step he takes.  Our journey hasn't been with out

obstacles, of course.  Any mom of a child with a physical

or mental disablility will tell you that us Momma Bears are

our baby's biggest advocates.  I've had to put my foot down

several times and demand what I know is best for him,

be it with our insurance company, or even with his school.

 

What I've found the most heart breaking to me is when other kids

will come ask me at the playground or something, "Why

does he talk like that?", "How do you understand what he's

saying?"  I always just smile and say his brain works a little

differently than yours and he has trouble talking sometimes,

and I understand him because I'm his mommy.

I know most of the time these kids don't mean to offend, and

are really just asking, but that doesn't make it hurt any less.

I hurts because I know how hard he works at talking

while most people just take it for granted. 

 

 CASANA (an Apraxia Awareness group) has a facebook

group for parents with childen with Apraxia and while

looking at it today I found one mom had posted this:

"I heard it explained somewhere how there is like a road between

the brain and the mouth, and the words are like cars. 

However, in kids with apraxia, that road is really windy and twisty,

with lots of deadends, so the cars/words take longer to get to the

mouth and some of them even get lost."

 

I like that, I might start using it myself.

 

A recurring theme amoung us Apraxia Mom's and Dad's

today on this first Apraxia Awareness Day is this:

Kolton is a face of Apraxia,

but it doesn't define him.

Kolton is

handsome

funny

caring

energetic

sweet

loving

silly

I could go on and on, but

"Don't nobody got enough time for that."

(a direct Kolton quote,

channeling his inner

Sweet Brown haha)

Basically what I'm saying is apraxia is one part of

what makes Kolton the boy he is,

 but it's not the only thing.

 

To any of you out there who are just starting this journey,

let me tell you there is light at the end of the tunnel.

I can't tell you how many times I've sat and cried my

eyes out wishing and hoping that one day all this work

he does would make a difference. The first time your baby

(even if he's 4, 6, even 10 years old)

tells you he loves you, will make it all worth it.

 

On this, the first Apraxia Awareness Day,

I will speak up for those who can't speak for themselves.

Will you?