Wednesday, May 14, 2014

National Apraxia of Speech Day 2014!

Imagine sitting in a room with a group of people. Conversation murmurs to your left. Laughter bubbles to your right. A lady shares a story about an amusement park ride she enjoyed during her last vacation. 

You shift in your chair. 

Another person chimes in and chuckles over the last county fair he went to, where he ate too much cotton candy and had the worse stomachache ever. You want desperately to tell everyone that your favorite ride is the Tilt-A-Whirl and that you love cotton candy, too. 

But you can't. 

That's what it's like for a child with Childhood Apraxia of Speech. They have so much to say, yet lack the ability to do so. 

Apraxia of Speech is a neurilogical disorder, where the pathways from the brain to the mouth muscles (approximately 100) are nonexistent, rendering the brain unable to send its messages for speech. Typically, these children are extremely bright and have a zest for learning. But in order for them to exercise that zest intensive therapy is needed to create those pathways from the brain to the muscles needed for speech. 

My youngest was diagnosed at age 22 months. We were extremely fortunate to catch it early. Lots of kids aren't diagnosed until they reach elementary school, causing delayed development. I've written about our family's experience before (published elsewhere), but here's a snippet of one of my articles I'd like to share: 

As a family, we dedicated ourselves to learning sign language and used amazing DVDs to do so. Once CJ was given his “Picture” book, he could hand us little images of his wants and needs. It was then that I finally understood what he had been telling me all along. 

Hearing CJ’s diagnosis being described as a neurological disorder could have crippled me. Instead, I collected research and questioned his two therapists on ways I could help him at home in addition to his therapy regiment. I searched magazines, the internet, and any other source to find pictures of everything under the sun. Shrinking the images and laminating them into a deck of cards made it easy to take to any ice rink or field my older kids were playing at. We would use car rides as therapy by flipping pictures to CJ and encouraging him to form the sounds. My older children helped, too. Slowly we saw improvement.CJ had lots to say. He only needed help finding his voice.

My greatest joy was the first time I heard him say, “Mama.” (Full article can be found HERE.)

Recently, Apraxia of Speech Awareness was awarded its very own national calendar day ~ May 14th. I couldn't be more thrilled. 

Let's help all children everywhere find there voice. 

(NOTE: CJ is currently a bright and thriving ten year old. He stopped therapy a few years ago and loves playing ice hockey, soccer, video games, and reading loads of books. He's one of my beta readers for my MG novel.)

I'd be honored if you'd share this post and help raise awareness for Apraxia of Speech. This is a disorder that, with therapy, children can overcome and live long, healthy, productive lives. 
 photo Sheri2.png

20 comments:

  1. I had no idea your son had apraxia or what it was until now. Thank goodness it was discovered early so CJ could get the help he needed and yay to you for sharing about this disorder!

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  2. Thank you for sharing your family's very personal story and that you all found such beautiful ways to be involved in his therapy.

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    1. I'd never heard of Apraxia of Speech before it touched our lives. Apraxia is like a sister disorder to Autism; most autism children have Apraxia. So, they tested him for Autism first. That was one of the most gut-wrenching times in my life. When the diagnosis cleared him of Autism I was obviously overjoyed. But then they drop this 'apraxia' word and told me all that would entail to help him. It was then I realized that we, as a family, had to help CJ grow. It was actually really good for my older kids. CJ's successes ended up being all our successes.

      Granted, that was eight years ago, and my older kids just think of him as a pain, now. LOL

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  3. Ah, I've heard of children having that problem, but I didn't know what it was called. I'm glad to hear you caught it early in your son, so he could find his voice earlier rather than later.

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    1. Oh geez. The end of you comment made me teary-eyed. :) Thanks so much for stopping by to read. I really appreciate it.

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  4. I can't imagine what that must be like. Will definitely share. :-)

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  5. I had no idea your youngest was diagnosed with Apraxia of Speech. I can only imagine how it felt to hear him say Mama. The thought brings tears to my eyes. I'll definitely share this post, Sheri.

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  6. That is remarkable! Thank you for sharing CJ's story and for bringing more awareness to apraxia of speech. Loved the sweet baby pics, too. Blessings to you and yours! :)

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  7. I've never heard of apraxia. Thank you for sharing your story. I'm happy to share it too so others like me will be aware.

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  8. Thank you for sharing about your family. I have a friend whose son has this--this helped me understand a bit better what he's going through.

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  9. Wow. I had no idea. I'll definitely share.

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  10. I'll be honest - I had no idea apraxia even existed, never mind what it was. I'm glad you're finding your way through it, though, and will definitely share!

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  11. Sheri, I've never heard of this. Thanks so much for bringing it to our attention. I would've thought the person was just shy or afraid of public speaking. I'm so glad you taught me otherwise. I'd be happy to share!

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  12. Thanks for sharing about this, Sheri. I learned about it in one of my special ed classes on assistive technology, but I've never worked with a student who had apraxia. Sorry I didn't see this post earlier. The day is almost over!

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  13. I'd never heard of this, Sheri. I'm so glad you caught your child's early. I can't imagine how frustrating that would be for a child to have so much to share and not be able to.

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  14. Hi, Sheri,

    I never heard of this disorder. What a sad thing for a child to endure. Thankfully there is hope and therapy. It is a wondrous thing to hear a child's first words and their excitement in living...

    Thanks for sharing CJ's story.... Have a great weekend!

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  15. You were lucky to diagnose the problem and get CJ help right away, but I have a sense that you're such a great mom you paid close attention, so luck had a lot of help. Thanks for the post and making people aware of something many have never heard of, including me.

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  16. So glad you had a proper diagnosis and found it early on. I don't have much klout, but am still glad to share. - Oh, and thanks for dropping by Life & Faith in Caneyhead during the AtoZ Challenge.

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  17. What an amazing story, and about something I'd never even heard of before. Thank you for raising my awareness, and bravo being the mom CJ needed--and needs!

    --Suzanne
    www.suzannewarr.com

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