What is your future like when you have GLOBAL apraxia?

By Laura Smith|November 24, 2014|Apraxia, global apraxia|

My friend Kim, (a fellow apraxia mom and SLP) and I talk a lot about how most people, including professionals and pediatricians, just have NOT SEEN global apraxia.  What is global apraxia?

Well, it’s not an official diagnosis.  You’re not going to find it in the DSM 5, and when you google it, you’re not going to find some great scholarly articles.  Nope.

Instead, you can google Childhood Apraxia of Speech and get some great information now on verbal apraxia thanks to CASANA of apraxia-kids.org.  Members of their advisory panel were critical in the recognition of the actual disorder from ASHA (The American Speech/Language Hearing Association).

Google oral apraxia, and a lot of information comes up for verbal apraxia, even though they are two very different things.

Oral apraxia refers to difficulty coordinating non speech oral movements.  These include: sucking, blowing, puckering, lip rounding, etc. whereas Childhood Apraxia of Speech refers to difficulty planning the precise movements for speech.

Google  plain old “apraxia” and the first two references are to apraxia-kids and ASHA, both referencing Childhood Apraxia of Speech.

The third entry is from Wikipedia, which references acquired apraxia of speech only.  This is for adults with brain insults for the record.

The fourth result is from WebMD which does acknowledge it as a developmental disorder as well, but says “typically, it is found in adults.”

Google “dyspraxia” and the first entry form ncld.org indicates “people with dyspraxia have trouble planning and completing fine motor tasks.”

Okay, so she now has: Childhood Apraxia of Speech aka verbal apraxia, oral apraxia, and dyspraxia.

Hmm…but she also has trouble with motor planning gross motor movements as well.  So what label is that?  Oh, and she also has trouble with visual motor planning as well.  So….what label is that?!?

So let’s see here.  According to a lot of testing, my sweet little Ashlynn has motor planning difficulties in these areas:

Verbal, Oral, Fine Motor, Gross Motor, and Visual Motor skills.

Does a human have any other motor planning skills?  Right now as I type this, I can’t think of any and it makes me so sad.  How does that sweet baby with normal cognition, have motor planning deficits in literally every part of her little body?

That my friends is why there is the term “global apraxia.”

You’re not going to find it with a search from google.  You’re not going to find it in a scholarly article, but if you do I implore you to email it to me because I have looked!!

You’re not going to find the term global apraxia in the Childhood Apraxia of Speech research, or the developmental motor planning research, on the dyspraxia websites, or searching under the term developmental coordination disorder.  I think this is because the research is already so lacking in these specific areas, that we are still a ways away from collectively combining all these separate disorders into diagnosing one “global apraxia.”

However, if you have a child with motor planning deficits in ALL of these areas, I don’t have to tell you, the term “global apraxia” makes absolute, unequivocal sense.

Can you imagine??  A pure definition of apraxia according to medicinenet.com is simply,

“The inability to execute a normal, voluntary motor movement despite being able to demonstrate normal muscle function.”

So as my friend Kim, another SLP put it: her son is essentially trapped inside his body.  How awful is that?  They know what they WANT their body to do.  They see peers or younger siblings executing the same things seemingly effortlessly…..and there they stand. Knowing what they need to do.  Knowing what they are ASKED to do.  Knowing what they WANT to do, but unable to do so.

It’s almost like being paralyzed, except everyone knows you’re not; so they expect you to do things you simply cannot do.

How does a sweet child respond to that situation?  How would you respond?  You can’t  tell someone you can’t do it, yet they see you as any other child.  Normal muscle function, seemingly normal cognition….

I ask you again.  How would you respond??

I can tell you how my daughter responded.  She would laugh and act cute.  Dang she is so socially competent.  It worked.  Sure they thought her receptive language skills were low and she didn’t understand what they were saying (read into this low cognition aka mentally retarded), but at least it gave her a pass.  Other times she just acted like she didn’t hear them. She still does that.  Oh…”attention problems” they say.

I ask you again though!  How would you respond when adults think you can do something, demand you to do things,  that you cannot do?! Oh and remember, you can’t TELL them you can’t…because,  well,  motor planning has got your tongue.

I can tell you about my friend Kim’s son.  He hangs by the door.  He tries to escape!  Poor baby is so smart!! Does the staff see that though?  Not really.  They see behavior problems.

I’m also not trying to down professionals.  Look.  I get it.  Apraxia of anything is RARE, much less apraxia of EVERYTHING.

I’m an SLP too.  Before Ashlynn, would I have been one of the misguided staff?!?

This leads me to my question though.  What is a future like for global apraxia? I honestly don’t know.

I know that my husband is right when he says my daughter always conquers all the mountains.  She does.  But is conquering the mountain the same as owning the mountain?  Will she have a skill, a gift, or something else?

Things were so cut and dry for me.  I was good at English not at Math.  I was a great speller and poor mathematician. I was athletically inclined and was naturally good at basketball.  What about Ashlynn?  What will she have?

I know already she has this incredible ability to unite people, to make people happy.  Everywhere she goes, despite when she was nonverbal or now verbal, people engage her.  They are drawn to her.  She is kind.  She is accepting.  She is sweet to a fault. She doesn’t see bullying, she sees hurting. She is naturally inclusive.  She makes people feel good about themselves.

These things make me incredibly  proud.  But can I tell you a secret?  I’m scared to death these “strengths” will kill her inside.  Society is cruel.  Kids are cruel.  Will this be enough to carry her through?

I want her to feel proud of herself.  I want her to feel and to know there is something she is amazing at.  I want her to know I am always and forever will be proud her…but I want her to feel that for herself.

I already know she’s resilient.  I already know she’ll overcome her obstacles.  At what price though?  What will she be interested in?  What will her passion be?  Right now, I don’t know those answers, but I know this one.

Whatever her passion is, I will do everything in my power to support it.  When she wants something…like to talk…she will work tirelessly and endlessly, equipped with a positive attitude to make it happen, and I will be right there making it happen with her.

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