Jake's Journey with Apraxia

In December of 2011, three months after Jake’s apraxia diagnosis, I found Leslie’s blog through a Google search. She gave me some advice for surviving in the blogosphere and I told her how excited I was for her new book “Speaking of Apraxia” to be released. Leslie was the first online friend that made me think, “This girl and I have a lot in common. I could really be friends with her!” Thank you Leslie, not only for sharing your story today, but also for putting the time, energy, and patience into writing a book on apraxia that will help so many families both now and in the future.

I am the mother of two very different children.  They both have red hair and blue eyes.  But that is where the similarities end.  As most parents know, our children are individuals—and we love them all the same—we love them because they are unique.

Her eyes light up when I suggest we create something artistic.  When it’s time to do her math homework, she melts down, “I have a brain for art, not for math!”  She loves to move her body, especially when it comes to Irish Step Dance.  And you can really get her talking when it comes to rocks.  Yes, the kid is fascinated with geology.  And nature.  And climbing.

But, she is not a natural communicator.

Kate (an almost 8-year old 2^nd grader), struggles with childhood apraxia of speech (CAS).

For those of you who are not familiar, CAS—or childhood apraxia of speech (CAS, or sometimes just ‘apraxia,’) is a neurologically-based motor speech disorder in which children know what they want to say, yet it just doesn’t come out as planned.  In essence, it’s like being having something on the tip of your tongue all the time.

Kate was diagnosed when she was 2.6 years old by a speech-language pathologist.  We promptly began intense speech therapy sessions 2 times a week, with feeding therapy tacked on for a third day of therapy.  At the same time, Kate also attended an intense speech-based preschool program five half-days a week.  Life went on like this for several years.

And then the day came in which her SLP said, “She’s done here.  We’ve done all of the necessary tests, and her apraxia looks likes it’s resolving.”  I nodded slowly.  “Really?  That easy, huh?” I wanted to say.

In retrospect, it was anything but easy.

As parents—as caregivers—we often get so wrapped up in the trees, that we forget to look at the forest.  Day in and day out, I schlepped her to the speech clinic.  I quizzed her at home, and in the car as we ran errands.  Calendar pages flipped, developmental milestones were reached.

Yet, I had difficulty noticing the passage of time.

Kate no longer pointed and grunted.  She was able to articulate her needs and wants clearly.  She was no longer frustrated by her lack of vocabulary.  Neither was I.  Or her grandparents.  Kate no longer felt held back at social events—she could play and enjoy life in the company of peers.  No one asked, “Why aren’t you talking?”  Other parents no longer looked to me to interpret her messages.  I no longer felt I had to defend my daughter.  Comments like, “Oh, she’s still learning to use her words,” became less necessary.

She was resolving.

But we’re not completely out of the woods.  As children with CAS grow older, and school becomes more challenging, we are often reminded that speech is not just the spoken words that come out of our mouths.

The secondary component—language—may become a little more problematic. Higher-order language skills such as grammar, written language, reading, comprehension, and sequencing may become troublesome.

In fact, Kate is struggling with every one of these components of language in 2^nd grade.  The good news is, her SLP cannot find anything amiss in her formal evaluations; she is scoring in the “average” range.

As parents, we were slightly alarmed.  Does this mean more speech therapy?  Not exactly (she’s able to access the school curriculum), but we knew deep down inside, she’s struggling.  She knows it, too.

What this means for our family is that we are all unique.  For some of us, certain skills come easier—like her mom who is a writer.  And her sister who loves to talk.  And her dad who has an innate understanding of data and numbers.

And as I write this, I am no longer sitting in the waiting room of a speech clinic, flipping through a book on motor speech disorders.  Instead, I am reading something for pleasure as Kate completes her art portfolio at semi-private art lessons.

For apraxia is not holding her back.

Bio:  Leslie Lindsay, R.N., B.S.N. is the author of the 2012 Reader’s Choice nominated SPEAKING OF APRAXIA: A Parent’s Guide to Childhood Apraxia of Speech (Woodbine House, 2012).  She is a former child/adolescent psychiatric nurse at the Mayo Clinic-Rochester.  Leslie is now a full-time writer at work on her first novel, an active blogger, www.leslie4kids.wordpress.com, and frequent contributor to several speech-related websites.  She devotes her free time to her two school-age daughters, Kate and Kelly and a spoiled basset hound, Sally.  Leslie is married to Jim Lindsay and resides in the Chicago area.