Apraxia is elusive, even to professionals.

Today is the second annual Apraxia Awareness Day, and in case you haven't heard, this year it made its way into the United States Congressional Record!  That's a big step in spreading awareness, but there is still a long way to go.

I was able to blog about the very first apraxia awareness day here First annual apraxia awareness day and I'm so excited to be doing it again this year.

Most people still haven't even heard of apraxia.  Doctors, including my own pediatrician had only vaguely heard of it, and many SLP's still don't know how to treat it correctly.  I was one of them!  I had a 20 page small folder on Childhood Apraxia of Speech from graduate school, and that was it!  Luckily I had an amazing mentor who took me to an apraxia conference when I first started in the field, and I was able to treat the disorder successfully with the three kiddos I saw at the school-aged level.

However, then my own daughter was born.  Her first year was stressful.  I hated the baby screeners at the doctor's office.  She wasn't cooing or really babbling, but she was so alert and had the best giggle!  Everyone assured me she would talk in her own time, but every screener put her further and further behind.  She crawled late, walked late, had poor balance and choked on her food and drinks, oh, and did I mention she wasn't talking??  I attended conference after conference on early intervention for speech.  I then would work all day and then came home and used the techniques on her.  One problem, they didn't work!!  I was stressed, worried, and constantly thinking about her development.  Even though I was treating it in the elementary school, it didn't occur to me that this disorder was also behind her development delays.

When I took her to Child Find I remember the evaluation like it was yesterday.  I knew she was behind, but seeing it with another SLP was heartbreaking.  I wanted to gather her up and leave so many times.  When the SLP came to talk to me, she said four words that I will never forget, and at the moment I instantly realized were true:  "Laura, this is apraxia."

My God.  How did I miss that???  However, I instantly knew she was right.  I was dealing with apraxia.
Apraxia.
Apraxia.
Oh God no, not apraxia.  Why MY baby??  I cried in the car after the evaluation.  I sent a text to an SLP friend "She has apraxia.  I'm devastated."

My mother in law was watching my baby.  I went home and cried.  "Will she ever talk?" she asked.  "Oh yes" I responded.  She just has to face the biggest hills in order to do it.  I cried some more.

I'm really not sure what's worse.  Being a parent who doesn't know what apraxia really is, or being a parent who knows exactly what the monster is, and just how hard she'll have to work to overcome it.

After the devastation....and to be honest I really did feel devastated, I mourned it, and then I became angry. I realized now why all the early intervention I was doing with her EVERY night wasn't working!!  She had apraxia!!  Apraxia has to be treated differently.  You need a motor based treatment approach, not a language approach. Why didn't I know the signs of apraxia in young children??  And you know what?  Once I put her with an SLP trained in apraxia, she made progress IMMEDIATELY.

IMMEDIATELY!!

I had a masters degree in this!!  It was unbelievable to me.  I reviewed all my early intervention conference notes and power points.  Not ONCE was apraxia mentioned.  It made me think, are early interventionists even looking at apraxia?  Why are we treating all speech delays the same way?

After I got over being angry, I got determined.  This happened to me for a reason.  I had successfully treated two cases in the schools, but I needed to know the ins and outs of this disorder.  I'm an SLP and MY daughter had apraxia and I missed it.  I missed it!!  As I think of that right now I'm shaking my head.  That's just not ok.  There needs to be more information out there.  It needs to be as well known to SLP's as their everyday speech and language disorders are.

That is my mission now.  I went to apraxia-kids.org and started signing up for webinars.  I went to every apraxia conference that came to Denver since that time, and was fortunate enough that the Apraxia National Conference came to Denver last summer in 2013.  I saw so many apraxia experts.  I found out about an apraxia intensive bootcamp.  I applied and I was accepted!  I go this July.   Last February, I gave my first ever professional presentation to a packed room of school based SLP's.  I didn't claim to be an expert, but I had come A LONG way since that mom crying in her car.  The interest was so great that people were sitting on the floor.  That's how much SLP's are craving this information.

I asked my clinical director at the private practice to support me in my mission to specialize in apraxia.  She didn't even blink.  I am so blessed to know her.

I started this blog, and now I started a facebook page SLP Mommy of Apraxia.  I want to give simple tips on things to do at home, and also spread awareness.

As for Ashlynn?  Well, she's basically just pretty amazing.  She meets every challenge head on without
frustration.  She overcomes every obstacle in her path, no matter how many time she has to try.  She's speaking in 4-8 word sentences, started independently doing show and share at her school, and has many friends she plays and socializes with.  She still needs speech.  We still work everyday on correcting her errors and mapping the motor plan, but I know she's going to be fine now. She's not only my hero, but my inspiration and why I stand up on TODAY, May 14th for EVERY child who deserves a voice on this second ever Apraxia Awareness Day.

Signs and Symptoms:
- Little to no babbling
- Only a few different consonant and vowel sounds
- Inconsistent productions of vowel and consonant sounds
- Disrupted prosody
- Difficulty with co-articulation of speech sounds
- Comprehends much more than they can speak

Diagnosis
- Only Certified SLP's trained in this disorder should diagnose it.  Pediatrician's and neurologists do not go through the extensive testing an SLP will do to provide a thorough differential diagnosis.

Treatment
- A motor based treatment approach to therapy must be initiated.  Therapy should be focusing on the planning, coordinating, and sequencing of speech sounds, usually with some sort of verbal or visual cueing system.
- To find professionals in your area see this link: Apraxia Experts by state

Most of all: Spread the Word!!  Knowledge is Power.

Calling all apraxia bloggers!! Let's link up for Apraxia Awareness Day!!

I read your stories daily.  I feel your struggles, I rejoice in your triumphs, and I nod my head in understanding.  You are my fellow bloggers.  I read your blogs like I'm checking the morning paper.  I read your tears and your smiles about your struggle with apraxia, and I share them with you about mine with my daughter's.  We read these stories as separate entities.  We close the blog and move onto the next, or we write our own story for that day.  What if we all wrote our story together?  What if we all weaved our experiences into an apraxia tapestry?  That is my dream in the Apraxia Awareness Link Up for Apraxia Awareness Day on May 14th.

I ran across the quote:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.

Margaret Mead

It's up to YOU and ME to spread awareness about apraxia.  It's only the second annual apraxia awareness day.  I am an SLP and many educators haven't even heard of apraxia and many SLP's don't know how to treat it correctly.  I want to read your stories.  I want to hear how you are spreading awareness and I want to link up with you in solidarity!

Please feel free to link up any posts related to Apraxia.  It can be anything! You fears, your successes, your diagnosis, your Apraxia Awareness Day Post, helpful tips, whatever!!  We want to see it! We want this to be a place to raise awareness for Apraxia, as well as to let others know they are not alone.  We only ask that you link back to link up at the bottom of your post!

An InLinkz Link-up

What are you doing May 14th, for Apraxia Awareness Day?

It's the month of May, and in my world, that means starting to think about what to do for the second annual Apraxia Awareness Day.  Leading the movement is CASANA, a non-profit dedicated to Childhood Apraxia of Speech.  If you are interested, they have a bunch of great ideas on how to celebrate here, at their website Apraxia Kids.

I did write to my local papers, but my favorite of all was making and seeing collages of our kids' sweet faces and what really defines them.  In addition, everyone blogging and lighting up social media was really powerful.  You can read about my first ever one last year here: First annual apraxia awareness day!

It was a powerful and empowering day.  I NEEDED that day.  My daughter was 3 1/2, and though she was doing great, she still struggled to talk and wasn't talking at all in school unless she was with her SLP (speech/language pathologist).  Though we made a lot of gains that year, it was easy to get bogged down with what she "couldn't" do, and what she still needed to work on. I was navigating this brave new world of social media, and one of the positives to come out of it was seeing all the apraxia superstars on the facebook support group APRAXIA-KIDS - Every Child Deserves a Voice.  If you are not a member and your child has apraxia, you absolutely MUST get on this page.

The month of May I was able to see the "faces" of apraxia.  Parents could share what their child could do, and not just want they couldn't.  Posts brought tears to my eyes frequently, and on the awareness day, I felt honored to be part of such a great group.  A slideshow of all the pictures was made and set to music. I don't know the song, but the lyrics were "Living in the Hall of Fame, Everyone will know your name."

I watched it over and over, and every time I saw Ashlynn I teared up.  She wasn't living in any other hall of fame in her own part of the Earth, but here she was a hero with all the other kids.

So...I encourage all you moms of apraxia.  All you warrior moms.  All you worriers, sleepless nighters, criers, advocaters, non-stop tireless fighters, create a collage like this and post it to every social media at your disposal.  I guarantee, you won't be alone, and you won't be disappointed.  Bloggers from far and wide will be linking up!  Find and add your link here: Apraxia Link Up Let's see the faces of our apraxia heroes!!

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

http://www.youtube.com/watch?v=OavDvi1ASIU&sns=em