Thursday, May 14, 2015

Childhood Apraxia of Speech

There are a multiple of valiant causes in today's world. I'm sure we've all been touched by at least one cause in some way. A family member or friend's struggle with a disease. Or maybe an acquaintance through social media drowning in medical debt. They are all worthy. 

Today, as I've done before, I'm sharing with you one cause that is near and dear to my mommy heart. 

Childhood Apraxia of Speech is a motor speech disorder, where the brain has difficulty sending messages to the parts of the body that are responsible for verbal communication. The child is fully aware of what he or she wants to say, but physically can't. As you can imagine, this poses loads of frustration for the child. 

I could go on and give you specifics about signs, false signs, and processes to proper diagnosis and treatments, but I won't. Instead, I'll share with you a piece I wrote for Apraxia - KIDS/CASANA a few years back. For those who've read this piece before, feel free to skim to the end. It's be great if you'd tweet a message to help raise awareness! To the new and/or young parents out there, I hope you find comfort in my family's experience. Finding someone who understands your plight can make all the difference in your world.

As the mother of three young children, I figured I’d seen it all from ADHD, tonsillitis, surgeries, colds, and runny noses. I was wrong.

CJ was born on a crisp November day in 2003, two weeks earlier than expected, and with a true knot in his umbilical cord. He should not have survived.

Feeling tremendously blessed, we took CJ home and, for the next six months, went about the busy life of raising four children. The latter half of his first year was spent with picture books in his hands and puzzle pieces scattered on the floor. He was fanatical about pictures. So much so, that by twelve-months old he had mastered 60-piece puzzles with no aid at all, pointing out objects in the pictures. He figured out how to communicate his wants and needs. I used to joke, calling it our private language. He excelled in every area of growth, except for the normal sounds babies make.

His first birthday came and went, but did not take with it his inability to make sounds other than the grunts and groans we’d grown accustom to. With no improvement in articulating formidable sounds over the next months, I spoke to our pediatrician about my concerns. She set up an appointment for CJ, who was 22 months old at the time, to be evaluated by a speech therapist. Her trust in me as a parent would never be forgotten.

CJ was officially diagnosed with Apraxia of Speech.

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.”

The next three years were spent in therapy, where CJ and his therapists developed a fond relationship, one that would unexpectedly follow him into elementary school. There, he entered special services for speech therapy. His original therapist took a job at the school and could keep an eye on CJ, one of her star little guys. We were so blessed.

But soon, it was evident that CJ had met and even surpassed the official state benchmarks to receive services any longer. It was then that an image of a chubby 22-month-old sitting at a lone table in his therapy room and swooning over the mini M&Ms, which had become his expected reward during speech, wafted across my mind. I knew how hard he had worked. I had educated myself enough about Apraxia to know that it could continue to affect him as his vocabulary and the demands on his system increased, especially around third and sixth grades. I could not let his hard work go to waste.

Through my advocacy, CJ was allowed to remain in speech therapy for the remainder of kindergarten, first grade, and the beginning of second grade. He is still in the second grade and was recently discharged from the program; however, I asked for a written agreement, stating that CJ will be allowed back into the program, with ease, if his speech skills backslide when entering third grade. Given that his original therapist is at the school, I am confident she, as his advocate, will insure CJ’s continued care.

The most important message I have through CJ’s story is parental advocacy. There is nothing wrong with standing up for your child’s well-being, as long as it is delivered in a positive manner. Parents can be their child’s voice, until he or she finds their own.

Every child deserves a voice.

For more information, feel free to visit ASHA or CASANA. Please copy and paste a tweet for us! Raising awareness can help in ways you'll never know, but that doesn't lessen the value. Thanks in advance. 

Childhood Apraxia of Speech Awareness Day!!! Help give kids a voice!   

What is Childhood Apraxia of Speech?    

Every child deserves a voice. Childhood Apraxia of Speech Awareness Day!!!   
 photo Sheri2.png

13 comments:

  1. Sheri, Good for you -- fighting to keep those services that helped CJ so much. You are right, the language demands of the upper grades might require their support, so I'm glad you have a written agreement that those services can be re-opened. I know that regulations by state can vary, but in PA we have a status labeled "monitoring" whereby students exiting the program are still carefully watched for signs that they still need support.

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    1. Yes, and that is a vital step to ensuring these kids get what they need to succeed. At the time, I never realized how much my intervention meant to CJ's care. It has only been in hindsight that I see so many children fall between the cracks because no one advocated for them. I just did it because he was my son and it's what I (as I'm sure you, too) do.

      BTW - he's doing awesome. Next year will be the real test, as he enters 6th grade. We'll see.

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  2. What an incredible story! And what an amazing child you have there along with all the fantastic therapists and you and your family. I've heard of Apraxia but had no idea what it was. Thank you for sharing. :)

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    1. Aw, you made me get all emotional. :) We are blessed in many ways, where CJ's situation is concerned. First and foremost was our pediatrician who listened to my concerns and didn't just write me off as an over-protective mom. I miss doctor's like that who really listen to you.

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  3. Wonderful post. Wishing little CJ many more successes and you, a lot of patience and strength :)

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  4. I had no idea about apraxia, or that your family had been touched by it. You and CJ are brave and inspiring. :)

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  5. Wow, I'd never heard of that. I'm glad you were able to get the right help for CJ. You are both an inspiration!

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  6. You are an amazing mama and both of you are such an inspiration. Blessings!

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  7. I didn't know about apraxia of speech. My children have had other speech issues, but I wasn't aware of this one. Thanks for sharing your story with us. I think you are truly amazing and such a great mom. Your son needed an advocate and you stood up (and continue to stand up) for what he needs.

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  8. Such a powerful post about this cause. It's also amazing what can be done through love, dedication, and hard work.

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  9. Thanks for sharing CJ's story. You are an awesome mom, and he's lucky your his.

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  10. You and your kid are both blessed by having each other. In every child's achievement, there is a mother. And you were always there to help your son develop his speech. You are a great example of a very supportive mother. All the best!

    Brendon Hudgins @ MedCarePediatric

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