Tuesday, May 14, 2013

The One Where It's Apraxia Awareness Day

Today is the first ever Apraxia Awareness Day.

For those of you who don't know what Apraxia is, I'll simplify it as best as I can... It's a neurological speech disorder where she knows what she wants to say, but her brain has a hard time making her body (especially her mouth) move in the correct way.  Therefore, it makes it hard for her to communicate verbally.  

If I were to read that for the first time, I might think, 'oh, that's sad...' or maybe, 'that would be really hard...' and not much else.  

But it's more than that.  

Some people think, 'oh, she's just a late talker'.  

But it's more than that.

Apraxia affects her whole life & the lives of those around her.  It makes it really hard for her to talk to other kids her age at school, people at the grocery store, her grandparents, and even her own parents.  Because of this, it will be harder for her to make friends at school (not to mention she will be 'different' than the other kids).  

This likely affects her in many other ways.  Often Apraxia makes it hard for kids to do basic things like tying their shoes, or writing, or playing sports or even something as simple as eating.  

This is not a pity party, though... 

Because Paige is amazing.  Paige is one of the hardest workers I know (even at the age of 3!).  Paige is a silly, happy girl who loves normal kid things.  She loves shoes, playing outside, reading books, princesses and ice cream.  Other kids who struggle with communicating might get very frustrated & throw lots of tantrums because they can't communicate.  Not Paige, though.  She's always been a very happy person & has a great temperament.    She's very patient with herself & with those around her who are trying to understand her.  She is progressing each day and more than expected, and I am so grateful for that!  Although, I work all day with her, Rick works every night with her & he has helped her so much.  

She combines 'words' like it's nobody's business (a big deal for anyone with Apraxia) & she is a chatterbox at home.  She uses more approximations than I can count, and even though other people can't understand them (and I can only understand some of them), I am so proud of her for getting to where she is today.  

The Apraxia community is raising awareness for many reasons.  One of the main reasons, though, is because children with Apraxia need speech therapy often for several years.  This can be very expensive (our personal SLP was costing us $90 per visit while she needed at least 2 visits per week... needless to say, we can't afford that), but insurance often does not cover it, and if it does, it will only cover a couple of month's worth.  If we raise awareness, we can encourage insurance companies to cover this appropriately.  Of course there are many other reasons we'd love to raise awareness.  

Our children with Apraxia all seem to be amazing & dealing with their challenges in amazing ways.  I wish that Paige didn't have to go through it, but since she does, I'm so proud to be her mom & to be able to learn from her.  She's amazing.  I'll say it again... I'm so proud to be her mom.

For more information on Apraxia, please visit http://www.apraxia-kids.org/

*I hope I am using the affect & effect in the proper way!  :)

1 comment:

DeRosa080208 said...

Paige is an amazing child, and you and Rick are amazing parents. I hope that some day soon more people will be aware of Apraxia and that insurance companies will start to recognize it as well. I'm so proud to know you guys. :)