Tell Me About Apraxia, Part Four

Speaking of Apraxia - Cover

This Saturday, October 12, we will participate in our third annual Walk for Children with Apraxia of Speech. For the last three weeks, and concluding today, I am sharing information about this common childhood motor-speech delay along with personal stories of our experiences coping with Anna’s apraxia of speech. Today I post an excerpt of an interview I gave to Leslie Lindsay, author of Speaking of Apraxia: A Parents’ Guide to Apraxia of Speech, last February as part of her ongoing “Apraxia Monday” series. The interview is cross-posted at DavidOzab.com

I appreciate you reading this post and I ask you to share it with others. And if—after reading this post—you decide that you want to help kids with apraxia of speech, please support us. We’re Team Anna (just like every year) and I ask you to make a donation and help us reach our goal. Thank you.

Anna strikes a pose on the beach last summer.

Photo: Julia Ozab

From your website and blog, I see that (Anna) is quite a spirited gal.  I am sure that brings you much excitement—and aggravation—can you describe your daughter for us? 

I describe her to strangers as  “a future academy-award-winning actress” which sums it up. I’m not sure if it’s a natural counterbalance to her cleft and her apraxia of speech, but she has always had an amazing, outgoing personality. Even when she was a baby, she never had stranger anxiety. It actually worried us a little that she was so comfortable around strangers, but we’ve taught her to be safe so no worries there.

She also has an incredible imagination that we encourage whenever we can. She’s very bright and is a voracious reader—something she gets from both her mom and I. She loves animals and currently wants to be a wildlife biologist, though she’s also wanted to be a photographer, writer, actress, astronaut, meteorologist, and schoolteacher. She changes her mind a lot like all kids do.

How do you feel Anna’s cleft lip has affected her speech?  Would you say her journey with apraxia has been more challenging because she has had an additional impediment, or does that not affect her apraxia much?

The two seem to be unrelated. She was born with an incomplete cleft lip—halfway up to her right nostril—but both a complete hard and soft palate. The cleft in her gum line, which she’ll have fixed in another year or two, is technically considered a cleft palate, but really isn’t and hasn’t affected her speech at all.

Now this may sound strange but if anything, her cleft was an advantage. She already had a cleft team in place at Doernbecher Children’s Hospital in Portland that included a Speech Language Pathologist. She usually works with kids who need speech therapy due to cleft palate issues, but she’ s also works with CAS kids and was available to diagnose Anna during one of her routine follow-ups. Without her being right there, Anna’s diagnosis might have been delayed at least six more months, maybe a year.

You’re working on a memoir that chronicles Anna’s life and her journey with apraxia and cleft lip.  Can you tell us a little about your book?  What do you hope the world will take from it?

A Smile for Anna tells the story of my daughter’s life from the womb to age four: her cleft diagnosis and surgery, her motor-speech disorder, and her irrepressible spirit.” That’s my elevator pitch. I’ve got it memorized. The story opens the morning Julia asks me “Are you ready to be a daddy?” (That’s the first line of the book, by the way.) And it runs through Anna’s fourth birthday, more or less, when—after everything that happens—I’m finally able to answer that question.

As for what readers will take from my book, I hope first and foremost to reach other parents dealing with the issues we dealt with—either a cleft or an apraxia diagnosis. When you’re faced with something like this, you feel so alone, but you’re really not. Lots of parents deal with one or the other, though not many have dealt with both like we have. I want them to know that they’re not alone.

Beyond that, I think it’s a story that will appeal to a lot of people. Parents in general, stay-at-home dads in particular, people of faith who wrestle with big questions and aren’t satisfied with pat answers, and anyone who’d like to read a great tale of an amazing little girl with an irrepressible spirit and a stumbling dad who figures it out as he goes. It’s funny in parts, and sad in others, and in the end hopefully it’s inspiring too.

If you had one bit of advice for parents who are just beginning to learn about their child’s apraxia, what would you say?

What I said before: you are not alone. Go to Apraxia-KIDS online. Read the Apraxia-KIDS blog. Check out Leslie’s great book Speaking of Apraxia. (See how I worked that in there?) Find out if there’s a 2013 Walk for Children with Apraxia of Speech in your area. Get a good SLP who you’re comfortable with, and above all be your child’s advocate. You are your child’s voice. Speak up. Every child deserves a voice.

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