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SLP Mommy of Apraxia: May 2013

Friday, May 24, 2013

She is the definition of perseverence (a poem)

You went to speak, but the words wouldn't come,

Stuck in your brain,  so easy for some.

You went to crawl with the best of intents

Yet your body didn't know what your brain meant.

You went to walk, big smiles and all

Yet every time you tried, it ended with a fall.

You went to drink from a big girl cup

You would sputter and spit till it came up.

A new car for Christmas kids want to ride

Spins in circles, hard to learn how to drive.


You are a living example to persevere

and with it you conquer all our fears

One day you said mommy, and I love you

One day you crawled to daddy's shoe

You don't just walk but now you run

You drink from any cup till it's done

and I know in time you will do it all

with just more patience and practice

you're going to conquer it all.

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So many things require motor planning, including a computer mouse.

I'm so frustrated today!  To make it worse, I'm frustrated with myself for being frustrated.  I went to put Ashlynn on abcmouse.com, and early learning site for kids as young as two.  Since she's 3.7, I figured this should be great.  Wrong.  Turns out using a mouse requires a high degree of motor planning and coordination.  God.  It sucks.  She can't even do things two year olds can do.  I mean, she can, but it's going to take a high degree of practice.  It's not fair!!  I just want to cry. I mean, forget using the site for educational purposes, we've been stuck on the tutorial just trying to help her get the hang of the mouse. 

It's not that she's not trying either.  She's so excited like she always is, smiling, happy to be learning something new.  It's just where most kids get to actually use the other programs on the site, we are using it to learn how to use a mouse.  This is something two year olds can do! 

Why does everything have to be so hard for her?  Anything she's ever done has required so much more practice.  Everything she's accomplished has not come easy, yet she perseveres with a smile on her face.  I have so much to learn from her.

Tuesday, May 14, 2013

First annual Apraxia Awareness Day! What it means to me as a mom and SLP

I never thought when I was going through school to be a speech/language pathologist, or when I became a speech/language pathologist, that I would one day have a child who would have apraxia. It's funny, because before I had Ashlynn, I was still drawn to the disorder. I was highly disappointed about the information that was available on it in graduate school. I think I have a packet of maybe 20 papers that discusses Childhood Apraxia of Speech (CAS), and that's it. Luckily, I had an amazing mentor who was able to take me to a conference given by Ruth Stoeckel from the Mayo Clinic in 2005. I still have her packet today, and have shared the knowledge I gained there with many colleagues.

In 2008, I had a child enter my school and on my caseload when he was in Kindergarten.  He did have an IEP from Early Intervention; however, therapy had been primarily unsuccessful.  One day, he pulled out an alphabet BINGO game I had on my shelf.  He proceeded to say every letter sound in isolation.  I quickly realized he must have Childhood Apraxia of Speech (CAS)!  Apraxia is a motor planning disorder that affects a child's ability to accurately plan, sequence, and execute the sounds needed for intelligible speech. Since he could say all the sounds in isolation, it was clear to me the breakdown must have been in the sequencing.  I pulled out my packet from Ruth, and found the apraxia-kids website.  If it wasn't for that website, I'm not sure how far I would have gotten with him either.  Fortunately, though, I did, and by the end of first grade, he was talking in sentences!  That's the power of information.  That's the power of awareness.  That's the power I hope other SLP's who may only have a 20 page packet from grad school get when they are called attention to Apraxia Awareness Day.

I am so grateful that there is now an Apraxia Awareness Day, not only for the children affected by CAS and their families, but also for the professionals who treat it.  We all know that early identification is key, but many kids can be identified much sooner than they are!  I currently am in another school building, in almost the exact same situation.  I have a child from a bilingual home come into Kindergarten nonverbal.  Now that I have more experience, now that I'm armed with more information and more tools, we started making progress the first week.  Though I'm happy for his progress, I am sorry for it's tardiness.   Especially, for his sake.  He is so smart.  He can point to any sight word in English AND Spanish, but just can't put those sounds together coherently.  He's frustrated and embarrassed.  This shouldn't have to happen to any more kids, and this is what Apraxia Awareness I hope, will accomplish.

As for my daughter?  I could never have fully appreciated the disorder outside the disorder, if it wasn't for her.  In her I see it's humanity and complexity,  it's heartbreak and hope,  it's tenacity and victory!  My 3 year old daughter has taught me more about CAS then graduate school, then professional developments, or my professional experience.  I can only believe that God chose me to be an SLP for a reason, and that my daughter has CAS for a reason.  I don't want to disappoint Him, and I don't want to disappoint her;  so I stand up for all the kids who DESERVE  a voice to raise awareness on this first ever Apraxia Awareness Day!

Please visit the apraxia-kids.org website for more information.

A touching 4 minute video on CAS

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Thursday, May 9, 2013

"I Will Wait" Struggles have made victory that much sweeter.

Ashlynn's progress continues to grow by leaps and bounds.  So many times I catch myself smiling and my eyes well up with tears to see her knock down all of her obstacles.

Last month she learned to jump for the first time at 3 1/2.  At the beginning of the year, it broke my heart to watch her try on a classroom trampoline.  On their turn, all the other kids exuberantly bounced away.  When it was Ashlynn's turn, all she could do was march.  Now, she is not only exuberantly bouncing, but she is catching air in my kitchen, on my patio, and even on her bed.  I was scolded for jumping on the bed, but I don't care if she busts every spring and I have to buy  her a new one.  It's worth it.  It's all worth it.  Every penny spent, every happy and sad tear shed, every minute in therapy; it's all worth it!  

She also sang to a song that she had never heard before in the car last week.  Mumford and Son's "I Will Wait" song was on the radio.  I was singing to it, and all of a sudden I heard her.  Her little voice filling the car with the chorus.  There are no words to describe the feeling.  I will buy the CD and put the album cover in her baby book. 

These little triumphs, so sweet when  you have a child with a developmental delay.  She has taught me so much.  We may have had challenges, but we experience something so much sweeter when there are victories.  We appreciate all the little things so much more.  We never take for granted, not even for a second, her talking, her jumping, her SINGING.  

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