Speech Apraxia: What is that?! Learning the Diagnosis

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“Well,” she began, “I think she has Speech Apraxia.”  I sat there looking at Kate and then at the SLP who has just completed the intense hour and 15 minute assessment.  “O.k.”, I thought, “At least we know what to call it.”  But just what exactly is Speech Apraxia?  The therapist’s short answer was, “a motor-neurological disorder that affects speech.”  Yes—of course, that makes perfect sense to any “regular” parent.  I was stumped and I had questions—lots of them.    I was tempted to just swoop up my children and our belongings and hustle on to the next stop: the craft store.  Being the creative mom that I am, I figured I needed some themed scrapbook pages for the next milestone: Kate Riley—The Apraxic Years. 

O.k., so maybe that’s being a little sarcastic.  (On a side note, sarcasm and humor are actually prosocial coping skills, which I was using in this potentially stressful situation).  I had no knowledge and no past experience with speech disorders, so I asked the therapist if she had any hand-outs or pamphlets on the diagnosis she just handed my daughter.  She didn’t.  But she did offer a website, Apraxia-Kids.  “I’d just get on-line when you get home and look it up.” And that was it.  I was encouraged to stop at the front desk to make an appointment to begin her first speech session.  Therapy was strongly suggested twice weekly for 1-hour until she reached “age-appropriate speech milestones.”  Again, I had no idea what that meant either.  The therapist said she would type out a full report and mail it to me, complete with therapy goals.  Whew—I was beginning to feel like this newfound diagnosis would actually get some attention. 

Indeed we did go to the craft store.  They have no stickers or embellishments for Speech Apraxia (I looked), but they had plenty of holiday-themed ones.  I grabbed a handful, determined to keep my newly diagnosed daughter as normal as possible.  So what if she has a speech disorder, I still needed her help making invitations for a family holiday get-together.  

Of course, any “good” mom would have gone right home, plopped her kids in front of a video and logged on to the Internet to do some hard-core research.  I didn’t.  Instead I told my husband how the evaluation went as he flipped through the mail and kissed his family.   “So, it’s called Speech Apraxia, that’s why Kate isn’t talking yet,” I mentioned casually.  He had similar questions as well…what does that mean, really…what caused it…what can we do about it…what’s the prognosis? 

I wasn’t a complete slacker-mom.  That night, after the girls were off in dreamland, I pulled out my laptop and did some research.  Not a lot.  Just enough to get a few of my most pressing questions answered.  I still needed time to digest all of this information.  Plus, there were invitations to create. 

LEARNING THE DIAGNOSIS:  You may have been searching for years for some term to identify why your child isn’t talking like every other Madison, Kaedon, and Carson and now you know.  Perhaps you just had the slightest inclination there was a problem and took your kid to the SLP to appease your family or the pediatrician.  Either case, now you have a word to describe the phenomenon: Childhood Apraxia of Speech (CAS).  What’s next? 

If it took you awhile to arrive at a diagnosis, you may be feeling like your competence as a parent has been challenged.  “Gosh, I knew there was something wrong, why wouldn’t (or couldn’t) anyone tell me what it was?!”  You might feel resentment toward all of those professionals you so dutifully lugged your kid to.  You might be feeling like calling them all up one-by-one and saying, “I told you so…na na na nanna.”  Don’t. 

You might feel like I did: relief.  Now I knew what to call this thing that was preventing my little sweetie from saying much more than “eh?”  But I also felt naïve.  One of my playgroup mom friends said, “Oh, Apraxia…that’s a tough one.  I was so glad when Jackson didn’t have it after all.  Call me if you want talk about it.”  I didn’t.  Not to her, anyway.  If Jackson didn’t really have apraxia, I didn’t want to get stuck with someone who would make it sound like the end of the world.  Plus, I wanted to believe that it would an easy fix.  Another mom friend of mine—who also has a daughter with apraxia indicated the same, “I just didn’t know…I thought one to two months of therapy and then she’d be talking normally.” 

Really, the “fix” is somewhere in the middle.  No, it’s not the end of the world, but it’s also not one to two months of therapy either. 

For now, sit tight with your feelings about receiving a diagnosis.  Listen to them, accept them and talk them over with someone…a friend, your spouse, your child’s SLP. 

If you feel like you might need a little extra time or TLC absorbing all of this information, seek out a therapist—the counseling kind.  It’s not wrong or bad if you do.  Remember, it’s a process of accepting and coming to terms with a diagnosis, it’s not supposed to happen overnight and everyone deals with it in their own unique way. 

Families adjust and perceive a diagnosis of CAS in different ways.  It all depends on the family’s cultural background, their resources (financial, insurance), religious beliefs, social supports, and the temperaments of individuals within the family.  How you respond may be different than your spouse’s reaction, and even more different than how your mother may respond.  Just because someone isn’t responding in the manner you think they should doesn’t mean they aren’t affected. 

One word about the grief process:  Elizabeth Kubler-Ross (“On Death & Dying, 1969) had it right for a person dealing with grief over the death of a loved one.  But she had it dead wrong for dealing with the loss of someone with a disability.  Yikes…you probably hadn’t thought of CAS as a disability.  I’ll explain later.  A parent learning the diagnosis of a disability doesn’t just neatly arrive at the final level of “acceptance” after going through a prescribed series of stages,(denial, bargaining, anger, fear, acceptance) as a person grieving a death typically does.  Instead, CAS feels like a roller coaster…feeling “up” about the diagnosis, then feeling “down” about it, and finally coming to terms with it as the ride nears its completion (resolved apraxia). 

Other feelings and emotions you might be experiencing after learning the diagnosis of CAS:

  • Disbelief
  • Confusion
  • Denial
  • Overwhelmed/information overload
  • Numb
  • Lost
  • Loss

Some folks may even relate to feeling “blessed” or as though they were “chosen” to have a child with such a diagnosis.  I remember feeling a bit dumbfounded when I learned about Kate’s diagnosis, “But I used to be in speech and debate.  I wrote and performed an oratory at a competition level, how could I possibly have a kid who couldn’t talk?!”  Perhaps I was “chosen” to help a little person navigate the road of apraxia…with my public speaking skills and child psych background, it seemed like the perfect fit.  At  times, it felt terribly unfair.  Look for coincidences like these in your own life and you just might see how you are the best parent for your apraxic child, too.

About leslie1218

Author of SPEAKING OF APRAXIA (Woodbine House, 2012) frantically working on a novel that should be ready for submission this fall. Mom of two spritely redheads & one chubby basset hound whose stories & images appear in my writing from time-to-time.

6 responses »

  1. Thanks Leslie! My 27 month old daughter was diagnosed with apraxia last week and it’s def. been a roller coaster of emotions since. Your post today really hit home and helped me not to feel all alone.

  2. Very, very well put!!! I can COMPLETELY relate! When my 10.5 yr old son, Reed, was diagnosed nearly eight years ago, I was so overwhelmed that it took weeks to research anything. I was taken aback by the whole grieving process I felt stuck in. I even felt ashamed for grieving a “loss” of a child who was still so completely by my side. I, too, found it interesting/ironic that I was blessed with him seeing as I was a critical care pediatric nurse with a crazy amount of child psych knowledge. It was like God knew I could deal with it and be a strong, effective advocate for him (even though I many times felt like cursing God out for His faith in my abilities). I guess I’m still waiting for complete acceptance; there are still those times I see him struggle alongside his peers and the pity party starts all over again in my head and my heart…

    We have been working ridiculously hard the last nine years, and slowly but surely, it’s paying off. And we have become a much stronger family unit as well. Funny, but Reed’s CAS, as heartbreaking and challenging as it is, truly has been a blessing for all of us.

    We have quite a long way to go to reach “resolved” status, but we have come soooo incredibly far from those “eh” and “mah” days. I’m continually reminded of how far we have come by the little things that happen everyday. The latest “ah ha” moment came when Reed asked me how come he can say “crap” but not “sh*t” since they both mean the same thing, are both four letter words (and therefore should both be either swears or allowable)… I had to laugh! There was a day when I would have REJOICED at any word that came out of his precious little mouth, even a swear. Yet here I was scolding him for swearing and telling him to “please use crap and never say sh*t again…”.

    Thank you for sharing your story… It’s so comforting to know that others actually do understand everything we are going through…

  3. Pingback: Apraxia of Speech « Beautiful Chicken

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