As children walk to find their voices, local news outlets stay silent

By Laura Smith|August 6, 2017|Apraxia, apraxia blog, apraxia walk, CASANA, Childhood Apraxia of Speech, walk for apraxia|0 comments

Yesterday, August 5th 2017 was the Denver Walk for Apraxia at Clement Park.  The walk was largely successful, raising close to 25,000 to CASANA, which will directly impact our kids in Denver struggling with this rare speech disorder.

This is ONE day out of the entire year kids who struggle to find their voice and endure hours and years of intense therapy, can be honored for their accomplishments that no one sees; just to do the one thing that comes so easily to many: SPEAK.

There were clowns making balloons and  face painters.  

 

 

 

 

Ashlynn dancing with Captain America

There were activity stations with student volunteers, Disney princesses, Captain America riding in on his motorcycle and then dancing with my daughter while listening to princesses sing on stage, and three young adults who had grown up with apraxia there, two of which braved their anxiety and fears and spoke on stage to describe the heartbreaking and moving struggled they continued to face in school due to this rare neurological speech disorder they happened to be born with.

Kelsey Belk, College student and young adult with apraxia speaking to the crowd.

The medal ceremony was full of big smiles and proud faces as each child received their medal and beamed.  For many of our kids, this is the best moment of the year for them.  In fact, my daughter has been caught many times sleeping with her walk medals and others have said their child said the apraxia walk was the ‘BEST DAY EVER.’

 We had free food, snacks, drinks, and a very successful silent auction.  One of the auction items included a book published by a girl with apraxia and dyslexia.

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I really loved our “walk of stars” which was a path made of posters featuring a picture of each child who has apraxia.

The day was absolutely perfect, but for parents and countless volunteer planners it was void of one very big thing.

Local media coverage was silent.

Despite numerous messages and emails from various parents, along with phone calls and even in person drop offs, the walk was not mentioned anywhere, on any calendar, or even on the things to do in Denver on any news outlet.

For parents trying to get their kids’ help for this disorder, it’s honestly not too much of a surprise. We’re used to knowing more about healthcare professionals about apraxia, we’re used to our children being ignored and bullied because of apraxia, the young college woman who spoke about her experience with apraxia describes being discriminated against.

I was the walk coordinator this year, and as proud and accomplished as I felt after the walk, looking back retrospectively it makes me want to cry the only people who seem to care or recognize these kids is one small nonprofit named CASANA, and the parents and friends who love someone with apraxia.

I played the song “Try Everything” from Zootopia for our kids after the medal ceremony.  The lyrics are reminiscent of our kids’ struggles since they fail time and time again trying to talk only to get up and try and again.

“I messed up tonight
I lost another fight
I still mess up but I’ll just start again
I keep falling down
I keep on hitting the ground
I always get up now to see what’s next”

I have to say I want to give up sometimes.  It seems like no one is going to care and sometimes the fight just doesn’t seem worth it anymore.  But then I look at these smiling faces who never give up, and like the song says, I need to get up again to see what’s next.

Just a sample of emails and contacts sent to the news for this year.  Numerous emails from 2015 and 2016 have also been left unanswered.

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