Why I’m angry and even more passionate as we approach the 4th annual Apraxia Awareness Day.

By Laura Smith|May 10, 2016|Apraxia, Apraxia Awareness Day, apraxia blog, Apraxia client stories|

I love Apraxia Awareness Day, ever since I celebrated my first one when Ashlynn was new to the dx.  It’s always a time of excitement, renewed hope and resolve, support, and community who comes together filling up facebook and my newsfeed with their apraxia fighters.

I’ve been honest and open about telling my own early experience with apraxia, which wasn’t much.  I’ve been the first one to admit I barely learned anything about it in graduate school, yet earned my Clinical Certificate of Competence and was for all intents and purposes an “expert.”  Such the expert that I missed it in my own daughter.

People, that’s a problem!  I was a good student.  I did my best to learn all the content presented to me.  I still didn’t learn about childhood apraxia like I should have, although I should be grateful my graduate school acknowledged it.  I just heard the other day that someone’s professor didn’t *believe* in it.  Didn’t *believe* in it???  Like it’s some damn mythical creature??  Don’t put me in a room with that man, seriously.   I will lose my shit.

Anyway, I digress.  Tonight I was seeing a client, and her mom had a previous Early Intervention SLP throw out the word apraxia in a flippant way.   She tossed the word around like it was a carefree beach ball bouncing around the pool, and it was only after mom had googled it some 6 months later did she realize apraxia doesn’t carry with it the carefree connotation of summer.  In fact, it’s  a serious dx in which some will never fully overcome.  She expressed her concerns.  The SLP wrote her back to just google apraxia and she would feel better.  If you are anyone who knows anything about apraxia and your are reading this, you KNOW that googling apraxia doesn’t make one feel better.  Better???  Are you kidding me right now??  If ANYTHING, googling apraxia of speech puts a parent on an immediate road to panic!

The mom was telling me that as much as she’s mad about the disservice done to her daughter, she was more upset about the potential disservice being done to children currently in the SLP’s care who have parents who might not look up apraxia and understand it for the serious dx that it is.  I defended the SLP saying I might not have realized how serious the dx was early on in my career either.  I stressed that THIS is the exact reason I feel awareness is so important and that we have to do our best to spread it where we can.

I left that session and returned a call from a client I evaluated a month ago.  The mom was basically beside herself.  Her daughter is being seen at a local (renowned) hospital and has been for the past 6 months or so.  Her daughter was born pre-mature with a significant birth history.  As fate would have it, or actually, if you know me, as *concidence* would have it, the NICU SLP ended up being her daughter’s Early Intervention SLP much later.  This woman fell ill, but before she quit she told this mom that she suspected apraxia, even though the child was young.  This mom did what anyone does, googled apraxia.  What happened to her happened to many of you reading this now who googled it for the first time.

You started reading characteristics and a pit immediately formed in your stomach.  The more you read, the more you saw your own child on those pages and the more scared you became.  Fear and uncertainty crept in.  You eventually try and look for success stories.  You many find some, but you can’t find anything to satisfy you.  You may cry.   Eventually though, you recognize  you are the expert on your child and you are going to get them help no matter what the cost.
It was after this that this mom found me and drove 2 hours and paid out of pocket for an evaluation.  She had actually said she found my blog, and her daughter sounded very similar to mine.

As I started the evaluation, this girl actually reminded me of MY daughter.

Even though the girl was young at 2.5, she cooperated fully with a speech articulation test and a motor speech evaluation.  She had ever single dx marker AND sub-marker of apraxia.  I could literally transpose my awareness day article I wrote for ASHA for Apraxia Awareness Day and she fit every, single one.  Oh, and FYI, to be dx with apraxia, you DON’T need to be dx with every single one!   Forget me and my writing though.  How about the ASHA technical report.  Yeah, she fit all those too.

Anyway, the mom almost cried and said incredulously, “so you believe me?”

I felt so bad.  This poor mom.  She knew more than the professionals treating her kid.  She had tried to tell them what her daughter did at home, but she always felt unheard.  That is bullshit.  A mother is an expert on her own child.  Professionals need to LISTEN to the mother.  I’m not saying dx because the mother said so, but don’t dismiss a mother’s concerns or reports.

Anyway, I wrote my report.  I didn’t even write suspected Childhood Apraxia of Speech like I normally would when I evaluate a 2 year old.  It was THAT obvious.

Not only did she have the top three markers:
*Inconsistent errors
*Difficulty with co-articulatory transitions
*Disordered prosody (in this case, equal stress patterns on the few two syllables she had)

but ALSO
*vowel errors
*tendency to centralize a vowel to shwaa
*oral apraxia
*feeding issues
*higher receptive than expressive language
*groping for sounds and words
*co-morbid fine and gross motor delays
*no babbling
*pop out words
*loss of words
*low tone

Anyway.  My report was so thorough anyone who read it would at least be compelled to treat it as suspected CAS.  Right??  Right??

WRONG

That was the phone call.  This mom had given them my report hoping that even though they made her feel like SHE was crazy, they would read a report from an SLP with expertise in the area who has a DAUGHTER with it too, and help her.

NOPE

“I can see what’s she’s saying, but I still don’t think it’s as dire as she made it seem.  I still don’t think it’s apraxia,” said one SLP.

Mom is defeated.  The only thing keeping her there is basically no other options, but she’s about to leave.  I was livid.

I AM livid.

Okay, this isn’t ego on my part.  At this point, I’m beside myself that if these TWO SLP’s can’t even recognize it’s one of the most obvious cases I’ve had lately, how is this ethical?? How do they read my report listing EVERY dx marker, and still remain firm her speech will come and it’s just because she was premature and has a language delay? Mom is going to leave, but I feel like something else needs to be done for all the other potential kids they will miss.

Why, WHY would they at the LEAST not say they disagree but would treat it as suspected apraxia?

How is this still happening?  How after ALL the freaking work CASANA has done, disseminating information, funding research,  awareness efforts they have headed….HOW is this STILL happening??

I’m sure I’ll be in a better mood Saturday (or I better be since I’m announcing all my giveaway winners), but I’m mad right now.  I’m mad because for all we seem to do, I still hear stories like this.  It’s not okay.  I don’t care if it a rare disorder.  I….DON’T….CARE.  If you are an expert in speech, the experts in speech need to know what they are doing or refer on!!  Heck, I”m really good at stuttering therapy.  I have a bunch of stuttering continued education, but I would never hesitate to refer a child on to an expert who sees it EVERY DAY if a mom had concerns.  In fact, I have recently!

I’m just shaking my head right now.  If I’m an SLP and I read a report from an outside SLP who specializes in a certain area, I would not roll my eyes.  I would make sure I knew the facts.  I would make sure I learned the facts or consulted others.  I consult others all the time!

My mentor Deborah told me early on, if I ever hit a stage where I know it all, I need to retire.  Best advice ever.  Her point of course is that we never know it all.  There is always more to learn.

I’m angry because a mom went through this once.
I’m angry because a mom and child are going through this again.
I’m angry because a mom and her child will go through this in the future.
I’m angry because for every awareness success story I feel like I hear double the failure.
I’m angry because it’s not just professional, it’s personal.

You know what? For the 4th Annual Apraxia Awareness Day, I want MORE than awareness.  I WANT change.  I want SLP’s to educate themselves and if they aren’t sure, I want them to put aside their ego and consult someone.

Is that too damn much to ask?

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