Tag Archives: Childhood apraxia of speech

Apraxia Monday: Helen Keller

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By Leslie Lindsay

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About a month or so ago, my family  read Who Was Helen Keller by Gare Thompson.  It’s a small book, designed for kiddos in the 1-4th grades.  You may know Helen Keller as the deaf and blind young woman who became quite famous for her writing and later appearance in the movie “Deliverance.”  You may not know much at all.  And  that’s okay, too!   Grab your notepad, it’s time for a history lesson. (image source: Amazon.com 4.22.13)

With my two girls snuggled on my lap after bathtime and a busy day, we dove into Helen’s dark, silent world. 

Born in 1880 in Alabama to a farmer/newspaper editor and a housewife, Helen was a beautiful–and bright baby.  She learned to speak early.  Her first words were “tea, tea, tea” and “wah-wah” for water.  If she didn’t know words for things, she made signals to show her mother what she wanted  (sound familiar?)

But just before Helen turned two years old, she became very sick with a fever.  In fact, her doctor thought she wouldn’t make it.  But, Helen’s fever broke, and all was well.

Or, so we thought.  Her mother realized Helen could no longer hear when the dinner bell was rung; Helen didn’t blink when objects moved close to her eyes. 

I paused reading, and looked to my daughters,Wouldn’t it be hard if you were blind-folded every day, all day and everything looked like night?”  They nodded, their round eyes growing big. 

I asked, “And what if your ears were stuffed with cotton balls?  That’s how Helen felt all the time.”  Kate and Kelly cupped their hands over their ears and closed their eyes. 

And when I read this sentence in the book, “Imagine if you could not see, hear, or speak.  How would you let people understand you?  How would you ‘talk?'”  my voice caught.  I pulled from what I knew: Childhood apraxia of speech (CAS).

[CAS is a neurologically based motor speech disorder, making it hard–or impossible–for children to articulate their expressive language.  It does not have anything to do with being blind or deaf.]

I snuggled my girls closer and read on, “But Helen was smart.  She clung to her mother’s skirt and followed her everywhere…Helen found ways to communicate.”

By the time Helen was five years old, she had devised over 50 signs of her own.  She pulled at her mother and father and that meant, “Come with me.”  For “bread,” Helen acted out cutting a slice and buttering it.  To say “small,” Helen pinched a small bit of her skin in her hand.  She spread her fingers wide and brought then together to show them “wide.” (image sourc: Wikipedia, 4.22.13)

I paused and bit my lower lip.  Little Helen, born 120 years earlier than my own children was employing the same techniques my daughter was CAS was using to communicate with her family.  As a toddler, Kate spoke in grunts and gestures.  She had a few rudimentary sounds which we all learned meant something.  For example, sucking as if from a straw meant “thirsty.”  Tapping her fingers together meant “more.”  “Namja” meant pacifier.  When she pulled my hand, it meant, “come see–I have something to show you.”  Brushing the tops of her hands meant “over, done.”  There are countless others, and I am sure as you read this, you know the ones your child uses to communicate with you. 

That night, we closed the book and promised to read another chapter the next day.  The girls were intrigued.

As promised, Helen’s story continued“The family tried to understand Helen, but it was not easy.  She had a terrible temper.   When Helen did not get her way, she threw a tantrum.”  (Ah yeah, another familiarity).  “Helen knew people talked with their lips, but when she tried moving her lips, no sounds came out.  She did not understand why.  It made Helen so mad.  She kicked and screamed in frustration.” 

At this point, I handed the book to my husband, “Here, you take over now.”  It was as if I slipped into a time warp.  Although my daughter is now 8 years old and doing just fine in regards to her apraxia, reminders of those early, days was a truth I was not ready to handle.  I thought I was reading a biography about a blind and deaf woman, not reliving painful memories of my daughter’s own inability to communicate. 

Kate cocked her head as we read, “Did I do things like that because of my apraxia?” 1028562722_Ri3ve-Ti

I sighed and explained.  “You did.  But it must have been really hard for you to have all of these wonderful thoughts, ideas, and needs inside of your mind with no place for them to go.  We knew you had lots going on in there, it was just hard to pull it all out.”  (image source: personal archives)

Kate nodded, “Yeah.  It was.”

“And that is why we took you to see Miss Jen and Miss Sylvia.  They helped you find your voice and now we don’t have to worry about that anymore.”

There wasn’t much more discussion about apraxia as we continued the story of Helen Keller until I aske Kate if could borrow her book.  She looked up from reading one of her comic books (The Adventures of TinTin has made an appearance in her world).  “Why?” 

I shrugged, “Well, it reminds me a lot of how our life was early on with apraxia.”

“Oh, that,” she said flatly and then  nodded towards Helen Keller sitting in her nightstand, “Go ahead, mom.”  (image source:  www.misspriss.com 4.22.13)

While those early years may have made an impact in my life, I can see that for Kate, it barely phased her. 

Children, like Helen Keller are resilient and can overcome great obstacles.  They can even learn and grow from these things…who knows, maybe some day our children with CAS will grown into speech-language pathologists and help other children find their voices.

Apraxia Monday: Growing up with Apraxia

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By Leslie & Kate Lindsay

Hi, my name is Kate.  I am seven years old and I’m in the 2nd grade.  I love to draw and play, especially outside.  I have a passion for building and creating things.  I am an inventor. kelly's 6th BD 2013 032

And I have apraxia.  That means it’s hard for me to get my thoughts out sometimes.  Big words are hard for me to say.  I need a lot of practice to talk like you do.

This is my mom.  Her name is Leslie.  I just call her “mom.”  She is also an author.  She wrote SPEAKING OF APRAXIA because she wanted to be able to help me and other kids with apraxia.  And their families.  Before she wrote this book, she was a nurse.  She really likes helping people.   (CAPTION:  Me and my sister with a puppy)

When someone asks me what apraxia is, I just tell them that it’s not serious.  I know you’ll probably roll your eyes like I do sometimes.  I bet you’re worried about apraxia.  That’s okay.  My mom used to worry, too when I was younger.  But you know what?  It’s not that big of a deal.  At least not to us kids. 

I used to go to speech therapy where I worked with my speech therapist, Miss Sylvia.  She made talking fun.  I love to move my body and she knows that.  So, we went to the gym at the speech clinic.  I got to go down the slide and each time I did, she would have me say “wheeee!”  After I went down the slide a few times, she had me do some speech work, like saying a tough phrase several times.  Then I got to go down the slide again. 

Sometimes I didn’t want to go to speech [therapy].  I’d get busy at home playing and mom would say, “Come on, Kate.  Time to go to speech.”  One day I asked her if speech had a drive-thru.  She laughed at that and said “No, but wouldn’t that be nice?”  The great thing about my mom is she made speech [therapy] fun.  I used to be able to pick a treat from a treat box after each time [speech session].  Sometimes, we would go to the park afterwards or she’d give me a piece of candy or something like that.Granny Day--100th day of 2nd grade 004  (CAPTION:  Me, all dressed up like a granny to celebrate the 100th day of 2nd grade) 

I will tell you when having apraxia (CAS) was hard.  Once, at a birthday party I didn’t know how to say ‘freeze’ when we played freeze tag.  I cried.  I wanted to play, but because that was a hard word for me, I couldn’t.  The other kids probably wouldn’t have cared that I couldn’t say ‘freeze,’ but to me—it mattered.

When I was a little younger, we went to see Santa at the mall.  I couldn’t even tell him what I wanted for Christmas.  But my little sister could.  My mom had a catalog and she showed the American Girl Doll to Santa.  Santa’s eyes got big and happy, “Oh yes!  I can do that.”  That made me feel better. 

Right now, it’s harder for me to read and write [compared to other kids my age who do not have CAS].  I have a special reading teacher at school because I have a hard time focusing on the words.  I learned to read a little later than some of my classmates.  When I write, I have a hard time getting my thoughts organized to come out in the right order.  But I am getting better. 

I know you are wondering if your son or daughter will be able to talk.  They will.  It just takes time.  And lots of practice.  They may not be as good at talking as you, but don’t worry.  They have lots of other really great things about them.  Just remember that. 

If you your child can’t talk much, find other things to do with them.  You can draw, bake, go for a walk or bike ride.  You can have tickle fights.  You can sit at Starbucks and sip a hot cocoa like me and my mom do sometimes.  You can do Irish Step Dance (or any other kind of dance)! Snow wall!! 2013 002

I know you have more questions about apraxia.  You should read my mom’s book.  It’s a big chapter book all about apraxia.  You can get it at Barnes & Noble and also Amazon.com.  If you like it, tell others about it. 

–Ta-ta for now!  Kate : )  (CAPTION:  This is my snow wall.  Love my gross motor!)

Bio:  Leslie Lindsay, R.N., B.S.N. is the author of the 2012 Reader’s Choice finalist 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. 

That's me--the mom.

 

In My Brain Today: Reader’s Choice Finalist

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By Leslie Lindsay

It is with great pleasure, awe, and humility that I share fantastic news.  SPEAKING OF APRAXIA:  A Parent’s Guide to Childhood Apraxia of Speech (Woodbine House, 2012) has advanced to the finalist stage of the Reader’s Choice Awards by About.com/Terri Mauro, mother and author.  Terri Mauro

(image source: http://specialchildren.about.com/od/readerschoice/tp/Readers-Choice-Favorite-New-Special-needs-Parenting-Book.htm.  Retrieved 2.21.13) 

When I decided to write this book, I hadn’t the foggiest idea of what Childhood Apraxia of Speech (CAS) even was.  I was the one who wanted/needed the book, I certainly didn’t think I could write one!  Published by Woodbine House, a leader in special needs parenting books, SPEAKING OF APRAXIA is currently the only book on the shelves written exclusively on apraxia for parents.  Having the book reach the finalist stage of a nationally-known award is more than a dream come true. 

But I could use  your help.  Just as the award’s name suggests, obtaining the honor of the award is based solely on readers.  So, if you–your child(ren)–or your organization–have been touched by the book, childhood apraxia of speech, any speech disorder, Down’s syndrome, or any other bioneurological disorder, then please take a moment to vote.  It’s really very simple.  Just click on the link below and a mark your ballot for SPEAKING OF APRAXIA.  Readers' Choice Awards Logo

VOTE HERE!! http://specialchildren.about.com/b/2013/02/19/vote-for-favorite-new-special-needs-parenting-book-2.htm

You may be asked to sign-in via Facebook, personal email, or About.com.  You can vote once per day till March 19th.  The book with the most votes WINS.

And since you are curious, I will be honest:  the “prize” is *just* bragging rights.  That’s it.  No money, no personal gain on my part…just a great book that readers like and gain valuable information from. 

Your support and commitment would be much, much appreciated. 

***And that is what is in my brain today, Thurday February 21st 2013***

For more information, and to see the other finalists, look here:  http://specialchildren.about.com/od/readerschoice/tp/Readers-Choice-Favorite-New-Special-needs-Parenting-Book.htm

Apraxia Monday: Interview with “Apraxia Dad,” & Writer David Ozab

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By Leslie Lindsay

For stay-at-home Oregon-based dad, David Ozab writing is not just a way to pass the time while his 7-year old daughter is at school.  It’s drive.  As a father parenting a spirited little girl born with a cleft lip and diagnosed at the age of two with childhood apraxia of speech (CAS), it’s a way of finding answers and sharing them with others.  It’s a way to make the world a better place.

Today, I am happy–and honored—to host an interview with David Ozab. OLYMPUS DIGITAL CAMERA

(This is David and his daughter, Anna.  Image source: www.scienceofmom.com.  Retrieved 2.4.13) 

L4K: Kudos to you for being a stay-at-home dad.  As we move deeper into the 21st century, we are definitely seeing a shift from the ‘traditional family roles’ and for that, I couldn’t be more proud.  Can you expand a bit on your decision to stay home with your daughter, Anna? 

DAVID:  It wasn’t so much one decision I made at a particular time, as at was a bunch of little decisions. When we were first expecting Anna, I was still looking for teaching jobs. My degree is in music and I interviewed at colleges in Wisconsin, Ohio, Oklahoma, and Hawaii. I even interviewed for a school in the Portland suburbs. I came close but never quite got the gig. Then Anna was born—with a cleft lip no less—and we had a bunch of other concerns to deal with. Julia at the time had a great paying job as a self-employed subcontractor, and I was helping her out in my free time so it seemed like a good decision—since we weren’t hurting for money—to stay in Eugene. Plus Julia was working from home for the first three years of Anna’s life so in a way she had two stay-at-home parents.

Then in 2009 everything changed, as it did for a lot of people. Julia lost her subcontracting job and we were faced with a choice. Yes, I could jump back in the job market, but academic jobs hire in advance for the fall and I had already missed the cycle for that year. Plus a job for me would mean an almost-certain move. Julia, on the other hand had more job opportunities locally. It made the most sense for us, especially as we were dealing with a recent apraxia diagnosis, for me to stay home with Anna. In the end, we made the choice that was best for her.

L4K: Let’s move on to Anna a bit.  From your website and blog, I see that she is quite a spirited gal.  I am sure that brings you much excitement—and aggravation—can you describe your daughter for us?  (I have a very ‘spirited’ daughter myself…so I can completely relate!)

DAVID: 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. girl-reading-a-bookShe 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. 

L4K:  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.

L4K: 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? (image source: http://mikeswritingworkshop.blogspot.com/2009/08/writers-at-work-ernest-hemingway.html.  Ernest Hemingway. Retrieved 2.4.13)

 DAVID: “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. Stay-At-Home Dad Resume

L4K: If you had one bit of advice for parents who are just beginning to learn about their child’s apraxia, what would you say? 

DAVID: 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.

L4K:  Oh, and I couldn’t help but notice that you are also ‘dad’ to two lop-eared bunnies.  Love that!  Do you find that having cute, cuddly pets helps your daughter with her disabilities, her developing sense of compassion, or her love for animals? 

I hadn’t thought about it that way, but yes to all of the above. She loves telling everyone she has “two bunnies named Jellybean and Oreo.” She loves all animals, and lately she’s fascinated with them.  I could see her growing up to be a wildlife biologist, wildlife photographer, or maybe a veterinarian. She’s got such a big heart. Yes, she can be a bit self-centered at times, especially when she’s talking to herself in the mirror, but no more than any seven year old. That said; she’s one of the most compassionate kids I know.

L4K:  Please share where we may get more information about your work, your blog, and your message?

DAVID: Ah, time to plug myself. Well, since you asked. My webpage is www.davidozab.com. I post about my writing career there and also have a link describing my book. Anyone who’s interested can leave a comment there or drop me a message. Now that the manuscript is done, I’d like to start compiling a list of potential readers so I can give agents and editors definite numbers when they ask about the market for the book.

I also guest post at various places and have several published articles in print or online. These are all linked off my website too. I’m always looking for new writing opportunities.

My other blog, www.fatherhoodetc.com,   is where I do most of my writing day to day. I describe it as “a stay-at-home dad’s thoughts on parenting and life” which is another way of saying I write about whatever strikes my fancy. It’s a good way to get a few hundred words out on days I’m not working on other projects.

And finally, I hope my message comes through in everything I write. In introducing a guest post I wrote about a year and a half ago, an online friend and fellow blogger described me as “a great encourager.” I hope my writing can always be encouraging to my readers, whoever they are and what ever their experiences might be. For me, that would be the ultimate measure of my success.

Say That Again: Giving Your Child The Gift of Voice

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By Leslie Lindsay

Making a list and checking it twice?  Your child may have all of the cars and trucks, dolls, & love, but don’t forget to give one very important gift: the gift of speech. 

Your child was given to you as a wonderful and miraculous gift to tend to and raise, and impart life’s lessons to.  But your child also brings much to your life: laughter, love, joy, and…well, baffling questions and concerns.    (image source:http://www.sheknows.com/kids-activity-center/print/dear-santa-list)

When my daughter was given the diagnosis of childhood apraxia of speech (CAS), I had little idea what that really meant, or how I could help.  Aside from the fact that I would be schlepping my daughter to and from speech therapy, I was dumbfounded.  I shrugged, rolled up my (elf) sleeves and accepted the challenge; I would give my daughter the gift of voice—even if I didn’t know how. 

Of course, the pediatric speech-language pathologist (SLP) we worked with privately for the next few years, coupled with the special-education preschool Kate attended five days a week really helped her thrive, socially and academically.  I wasn’t carrying the brunt of apraxia alone, yet at times it felt that way.  It really does take a village to raise a child.  Along the way, I learned some valuable lessons, insights, and therapy ideas that may also help you along your apraxia journey.  Think of them as small glitter-wrapped packages under your tree; a toolset for apraxia. (image source: http://www.centsationalgirl.com/2011/11/in-the-spotlight-matthew-mead/)

glitter ribbon wrapped gifts matthew mead

          Here are a few things you need to keep in mind as your “golden rules” in working with your child with CAS:   

  • Have your child repeat, repeat, repeat! Movement repetitions build strong motor planning/programming/gestures. Can you say that again?
  • Provide lots of opportunities throughout the day to get your child to talk or vocalize—about anything.Your child will begin to see that communication is indeed a fun part of life.  What color is that dog?  Is the cup big or small? 
  • Be goofy and funny. If you are relaxed and your kiddo is relaxed, words will come easier.  Ask nonsensical questions to elicit a response, give silly options.
  • Make talking and speech practice more about your lifestyle and less about “sit and speak” time.  In this sense, you “work it in” to your routine.
  • Team up with your SLP. Have her give you ideas for homework and report back to her. Let her know what your child does well at home and see if it works as well in the clinic. Think of your SLP-parent-kid connection as a circle with no beginning and no end; make it appear as if you are driving a fancy automatic car—smooth and effortless, even if it’s really a jumpy 5-speed jeep.
  • The more talking feels like work, the less willing your kid will be to do it.
  • Imitation is huge, too. “Can you say what I say?” Try it. If imitation is too hard, try doing it in unison. Remember all of the chanting our grandparents did in school for memorization? Even singing the ABC song is a form of imitation in the form of chanting memorization. 
  • You are mom or dad first. You do not need to become your child’s speech-language pathologist. Kids are smart. They will know what you’re up to and won’t participate if you act too much like their SLP. 
  • Your goal is to complement your SLP’s efforts in your own home. Talk to your SLP about a reasonable amount of home practice. This will also depend on the age of your child. As one apraxia parent named Mike shared, “An SLP is like a personal trainer at the gym. You go, your trainer works with you for an hour and teaches you things to do on your own, but it’s up to you to do the rest.” 

Once you have a good sense of these basics, it’s time to start incorporating moments in your daily routine which will help your child see that communication is indeed important and valuable.  No worries, you don’t have to do anything fancy or special.  Most of these ideas are free, or low-cost. Chances are, you already have a lot of toys, materials, and props at home that will spark your creativity.  Remember, just about any toy or object can be used as a “therapy” tool. 

The “gifts:” 

  • Have a family game night. Traditional favorites will do the trick.The speech payoffs here: turn-taking, counting, requesting, being a good sport, and other communication opportunities.   
  • Visit your public library. Let your child find some books of interest and then read them to her. Speech payoff: child-directed learning, introduction to new vocabulary, 1:1 time with you in which you are modeling pronunciation and articulation. You might even hear some sounds or word approximations from your child! 
  • Experience and connect with nature. Speech payoff: identify and describe what you see, hear, and smell. Think holistically—this is more than just a walk in the park.  (image source: http://www.roundmidnightmusic.co.uk/page5.htm)

  • Exercise by biking or sledding, walking, or swinging. Speech payoff: vocalizations and words are often heard with movement.  Exercise also increases self-confidence, which these kiddos need more than anything. Children with CAS often crave movement. 
  • Do some art. Speech payoff: Besides the 1:1 time all kids need, it also unleashes creative potential and gives you something to talk about: “What color should we make the tree?” Practice saying “tree” or “green” while you’re at it.  tree pine(image source: http://zoe1297.wordpress.com/2009/07/20/not-pointing-fingers/tree-pine/)
  • Listen to music. Speech payoff: Kids need physical movement, and what better way to get them to move than with some rockin’ tunes? Encourage singing; even if they can’tget the lyrics out, they can hum along. Plus, music has a positive effect on mood—even yours!  
  • Bake cookies or cupcakes. Speech payoff: identify ingredients as you toss them into the bowl, have your child repeat the words (flour, sugar, butter, etc.) if she is able, talk about shapes as you roll out sugar cookies. Share your cookies with friends and neighbors and let your child do some of the talking—if possible—when the two of you deliver the goodies. It can be as simple as saying, “cookie” or “bake”–even an approximation will do.   (image source: http://www.life123.com/parenting/young-children/cooking-with-kids/teaching-the-joy-of-baking-to-kids.shtml)

And when it’s all said and done (yes, pun intended), you can sit back and be proud, not just of your child—but of your efforts as a parent as well.  Who knew you had it in you?!  Thanks for giving your child the gift of a lifetime; the gift of speech. 

Bio: Leslie Lindsay is a former child/adolescent psychiatric R.N. at the Mayo Clinic.  Her daughter, Kate is in 2nd grade and recovering from CAS.  Kate's Tooth! 004

Apraxia Monday: Practicing Pirate Poems

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By Leslie Lindsay

She shuffles her feet and looks up at me, a smirk growing across her face.  I nod and prompt her to continue. 

“I’m Captian Kid…my treasure is hid.” Her voice is strikingly loud and clear. 

My heart speeds up a little.  You can do it, kiddo!  It reminds me a lot of the time I sat (hugely pregnant with #2) in a cramped speech-pathologist’s office when this same little girl was being evaluated for a “speech delay.”  You can do it, kiddo!  I chanted in my mind.  Only back then it was simple imitation tasks like, “can you say, ‘moo?’ ”

Fastforward, nearly 6 years and this little girl–the one who couldn’t say ‘mama’ at  2 years old–is now reciting poems in 2nd grade.  She has childhood apraxia of speech (CAS). 

Chances are, if you are reading this then you care deeply about a child with delayed speech or CAS.  It’s hard.  It’s baffling.  It’s discouraging.  But, I tell you…with proper interention (frequent, intense, and continuous) speech therapy with a qualified SLP, your child will make huge strides. 

Poetry and rhyming are traditionally very challenging for kiddos with childhood apraxia (CAS).  Why this is, is still a bit baffling to the researchers, but they believe that kids with apraxia may not fully hear the words and lack the ability to recognize the different phonemes.  (image source: http://blog.jumpstart.com/2009/01/30/tips-for-practicing-rhyming-words/)

I found this to be the case with my little Kate.  She couldn’t tell a rhyme from a ream. When we’d ask her, “Hey, I thinking of a word that rhymes with cat–what is it?!”  She would look at us blankly and say, “dog?”  When we would read rhyming books with her like, There’s a Wocket in my Pocket, we’d leave last rhyming word hanging in hopes that Kate would supply it, but she wouldn’t.  Or couldn’t.  Instead, she would provide an alternate word with approximately the same meaning.  My husband knitted his eyebrows and looked over at me, as if saying, “what are we doing wrong?” 

Chances are, we did nothing wrong.  Childhood apraxia of speech (CAS) can permeate every crevice of a family–right down to storytime. 

Now that Kate’s apraxia is in mega-resolving mode, we still have to work a little harder than other kids who don’t have apraxia.  We read that goofy poem at home for a good week before she was prepared to do in in class. 

“I’m Captain Kid and my treasure is hid!”  my voice bellowed. 

“Been that way for many a yer…”  my husband’s pirate voice boomed. 

My hubby and I read that poem to each other.  We read that poem to the kids.  We read it so Kate could hear how it was supposed to sound.  We read that poem in the car.  At step-dance.  At dinner.  At bedtime.  She had the darn thing memorizeed…heck, so did I!  And then we had her read it to us.  Lots of times. 

And when I popped a pirate hat on her and handed her a bag of chocolate coins covered in gold foil, she beamed.  She was ready. 

I am happy to report that ‘Captian Kate’ read that poem with fluency, expression, volume, intelligibility, and even interacted with the audience. 

Aye, aye! 

Say that Again?! Green Eggs and Ham with a side of Apraxia

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By Leslie LindsayStack of books. (image source: http://www.lacrosselibrary.org/index.asp)

[This post previously ran over the summer.  Here it is again in case you missed it.] 

I don’t know about you, but I love books.  I love kids.  And when one combines the love for children and literature, what often results is the abundance of words. And perhaps the proud moment of announcing, “Hey—she can read!” a year of two ahead of schedule. 

But not if you have a child with apraxia.*

And so we read.  As parents we read parenting books about late-talking children.  We read about speech development and ways to stimulate our child.  We read books to Kate.  Simple board books by Dr. Seuss and Sandra Boynton that had the happy cadence of alliteration and rhyme.  We pointed out illustrations in the book, “Oh, look-y here…can you see the birdie?  Can you say bird?”  We engaged in dialogic reading with our daughter, “What do think will happen next?”  And nothing. 

Sure, she understood everything we said, even the hard words.  We could tell because she would be able to perform simple directions like, “go get your shoes, we’re going for a walk.”  But still, nothing.  At least not any expressive language.  

Kate was diagnosed with childhood apraxia of speech (CAS), a neurologically- based motor speech disorder in which kids know what they want to say, yet they can’t coordinate the complex movements required to speak intelligibly. She was 2 ½ years old.  What resulted instead was a lot of pointing and gibberish. 

Fast-forward five years, and you will see that Kate has overcome a considerable challenge.  She is now a normally-speaking soon-to-be 2nd grader.  Sure, there were struggles and years of speech therapy. 

Our speech-language pathologist (SLP), mentioned that children with CAS have a particularly difficult time with identifying and composing rhymes.  Why exactly this is, is speculative.  Some say it has to do with the overall motor circulatory of the brain, the “wiring,” if you will; or the abstract arrangement of sounds and letters, perhaps it’s the mind-body connection, or simply being a visual versus auditory learner…in any case, it’s a challenge. 

But just this past week, we pulled out Dr. Seuss’s Green Eggs and Ham.  My husband handed the shiny orange book to Kate at bedtime,** “Here, you read this one.”  She looked at her daddy with wide eyes, “You can do it,” he coaxed. green-eggs-and-ham (image source: http://www.rainiervalleypost.com/weekend-update-first-friday-swing-dancing-dr-seuss-more/green-eggs-and-ham/)

She sucked in a deep breath and rolled her lips into a tight line, “I am Sam,” she began

My eyes welled with tears.  Her voice a little choppy (prosody is something she will likely always struggle with), a few stumbles here and there, and a long pause about half-way through, I cheered her on in my mind.  Finally, she sighed, “I can’t do it anymore.”  We egged her on (sorry, couldn’t resist), “Yes.  You can do this.”  (We ended up alternating pages.  Reading aloud can be very taxing for children with apraxia). 

And you know what?  She read that whole book. Say, I do like reading and rhyming, Kate-I-am.  (*Commonly known as Childhood Apraxia of Speech (CAS), or “dyspraxia of speech” in the U.K. and elsewhere.  **In retrospect, it would have been best to have Kate attempt a challenging rhyming book at a time of day when she is likely to be more alert).  

   Cheerleader (image source: http://www.spaghetti-legs.com/servlet/the-74/Zippered-Tote-with-YOUR/Detail)

TRY IT AT HOME:

  • Remember, you are your child’s cheerleader.  Let them know you care and support them, but don’t make it too easy.  Challenging your children to the point of feeling slightly uncomfortable is okay.  It means they are growing (and you are, too)
  • Get yourself to the library.  Ask a children’s librarian for some simple rhyming books.  Even if they seem a little “baby-ish,” read them to and with your child with apraxia.  Practice, practice, practice!  (Some titles to look for, There’s a Closet in My Woset by Dr. Seuss, ‘Twas the Night Before Kindergarten (1st grade edition also available) by Natasha Wing, BOB books).
  • Remember, there is a difference between rhyming books (cat and mat) and  predictable/repetitive books (it’s pretty clear that you know what will happen next; the same phrase pops up every few lines (Goodnight Moon by Margaret Wise Brown) and wordless books (there is no text; you and your child create your own story as you study the illustrations; Good Dog, Carl byAlexandra Day) and cause and effect books (If You Give a…. series by Laura Numeroff) All types of books are important to a child with CAS. 
  • Extend your reading activity to make it whole-body experience.  Act it out (as in charades), whip up a batch of green eggs and ham or some chocolate chip cookies.  Have your child draw a picture or make her own “book” related to what you just read. 

SPEAKING OF APRAXIA: A Parent’s Guide to Childhood Apraxia of Speech (Woodbine House, 2012) covers many of these ideas in chapters 10 & 11). 

Bio: Leslie Lindsay is former child/adolescent psych R.N. at the Mayo Clinic-Rochester. She is the mother of two school-aged daughters and a basset hound, named Sally. Lindsay and her family reside in the Chicago suburbs where she writes full-time. She is the author of “Speaking of Apraxia: A Parents’ Guide to Childhood Apraxia of Speech” (Woodbine House, March 2012). Read more on her blog, “Practical Parenting…with a Twist” where she writes about apraxia, parenting, education, and more 5 days a week, www.leslie4kids.wordpress.com

 

Say that Again: Apraxia…You just Gotta Practice

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By Leslie Lindsay

(image source: Shutterstock.com)  Norwegian researchers have devised a new way of creating a child-like synthetic voice for ...

Over the summer, I was a  guest blogger on Haley’s blog, “Say What, Y’all?”  Not only do I love the title of her blog, being a former Missourian myself, but I can totally relate to having said this euphemism so many times in my “career” of being an “apraxia mom.”  Here it is again for those of you who may have missed it: 

You won’t soon forget her.  The red hair and blue eyes the size of saucers will linger in your memory.  So, too will the fact that she is as fire-y and energetic as that copper hair that cascades down her back, framing her freckled face with possibility. 

And when you hear her speak, you may have an inkling that she once suffered from moderate to severe childhood apraxia of speech (CAS), or you may be none the wiser. Although Kate is a bright, creative, and eager soon-to-be 2nd grader, she has overcome a road block most of us never have to deal with: a struggle to communicate expressively. 

I won’t bore you with the early days of suspicion and diagnosis and our first experiences with an SLP, but I will give you just a teensy bit of background:  Kate didn’t say much of anything—expect a friendly “hi”—for the first 2 ½ years of her life.  She was diagnosed with CAS at that time and began an extensive speech therapy regime 2-3 times a week for about 2+ years.  She is speaking  just fine now—with a few minor backslides here and there. 

When I was in the midst of writing, “Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech,” (Woodbine House, March 2012), I developed and facilitated a small parent education group called “Small Talk:  All About Apraxia” in the Chicagoland suburbs.  I wanted to connect with other parents also walking the apraxia path, hear their ideas and dilemmas, and facilitate their journey.  On one occasion, I brought Kate along.  Actually, she asked to join me!

“Mom, can I go to your [a]praxia group?”  She inquired one afternoon.

I shrugged and bit the inside of my cheek, “Well, I guess so.” I replied.  “But it might be a little boring for you…a bunch of mommies talking about apraxia…” 

“I don’t care.  I want to hear what you’re talking about,” she replied. 

And so she came.  But, beforehand, I asked her to think about what she might say to these parents.  She pondered that a moment and then rushed off to her room where she sat at her desk drafting out a speech.  She presented it to me just before we headed out that evening.  It read:

“I have upraxea [apraxia].  It is not seryous [serious].  All you have to do is practis [practice] your words more.  Don’t wory [worry].  Your kids will be ok.” 

Pride coursed through my veins.  I hugged my daughter and praised her for being able to communicate her thoughts on the disorder that has plagued her for most of her life.  It’s not every child who has that insight at her age. 

Once at our “Small Talk” meeting, I introduced Kate to the group.  The mommies smiled encouragingly as she read from her paper in stilted English, much like we might if we were visiting a foreign country and reading from a Berlitz book.  They beamed and applauded afterwards, some even dabbing their eyes. 

You see, it took a lot of courage for her to come to the group that evening and speak to a group of adults she didn’t know about something so intimate and close to her—to us as a family.  I couldn’t have been more proud. 

As usual, she was one to something.  Having apraxia really just means that one needs to practice speaking more than others.  While I don’t want to oversimplify things—it’s hard, long practice—but if we as parents can reframe the diagnosis of CAS to “a-word-practicing-disorder,” we may have a lot less stress and anxiety.

Today—literally—we were talking about some words that are troublesome for Kate.  She said, “I can’t really say shoulder.  It sounds like soldier.  And what’s a scone, anyway?  You mean cone, right?”   As a family, we laughed—we agreed—there are some words that are hard to say.  But if you practice them, you just might learn to say them. 

“ Apraxia.  You just gotta practice.”  –Kate L. 

Bio

Leslie Lindsay is a former child/adolescent psychiatric R.N. at the Mayo Clinic. It is because of her daughter that Leslie wrote the first book designed for parents on this complex neurologically-based motor speech disorder.  Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech(Woodbine House, 2012) is as much as labor of love as it is a resource to help others along their apraxia journey.  She lives in Chicagoland with her husband, two daughters, and a basset hound where she writes full-time. She is currently at work on a women’s fiction novel.  Follow her blog, www.leslie4kids.wordpress.com
“Practical Parenting with a Twist” in which she writes 5x/week on apraxia, education, parenting, and the writer’s life.

Apraxia Monday: ABCs & CAS (Why Reading is Hard, How YOU Can Help)

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By Leslie Lindsay abc_book.gif

We know that having children with CAS presents a different set of challenges.  From not being able to commuicate clearly to learning to read, seems there is always something we need to help our little people with . 

Learning to read with CAS is topic that is often up for discussion.  Why is it so darn hard for these kiddos to learn to read?  And what can you do to help your child? 

Why Is Reading Difficult for Children with CAS?  Kids with apraxia have several problem areas to consider when reading comes into the picture:

  1. Kids who aren’t making sounds accurately (or at all) may have a decreased visual representation of what letters look and sound like.

 

  • Kids with speech-language disorders may have a distorted sense of what the symbols (letters) represent (letters are symbols which represent words).

 

  • Kids with apraxia may have “differently-wired” brains, affecting the way they read, learn, and interpret information.

 

  • Children affected with CAS may have a decreased ability to coordinate the vocal track in producing a word. 

When it comes to reading comprehension, researchers say that some kids with apraxia and other learning difficulties lack the appropriate strategies to allow them to understand what they just read. It’s complicated. Reading requires a lot: decoding words, visualization, understanding context, activating prior knowledge, a large vocabulary, and the ability to comprehend what you just read. For example, if a kid has to work really hard to understand (decode) the words on the page, then he may not have much energy left over for defining an unfamiliar word.

And now…how you can help! 
 (image source http://catholicblogger1.blogspot.com/2010/06/parent-involvement-in-ccd.html)

  • Read wordless books (Or have your child illsutrate her own). Don’t disregard books that have no print. They are important in getting kids to be the storyteller. Each time a child “reads” a wordless book, the story changes slightly. Of course, this may be harder to do if your child isn’t saying much. But the more you present the book, the more he will attempt.  
  • Engage in dialogic reading. What this means is you stop and ask your child questions about the book you are reading. “Oh, look. I see a little girl who is ready to go to school. She has a backpack. Can you say ‘backpack?’ What else do you see?”
  • Read riddles.Look for a riddle book the next time you are at the library. Great for long car rides or an after-dinner family activity. Riddles provide good exposure to, and practice with, the nuances of language.  Riddles also help develop a rich vocabulary and improve reading comprehension.
  • Explore letters and sounds.Develop a “Letter Center” at home if you have the space. Supply it

    with magnetic letters, alphabet puzzles, sponge letters, foam letters, sticker letters, rubber letter stamps, clay/Play-Doh and cookie cutters shaped like letters, and perhaps even computer software that focuses on the alphabet. In the same area, it may be a nice extension to offer different types of literacy materials: catalogs, labels, newspapers, empty cereal boxes, recipe cards, junk mail, and greeting cards. If it has print on it, it counts! 

  • Clap it out. You may want to start with a simple adaptation of clapping out syllables. Say, “I am going to clap my hands in a pattern. Repeat after me.” Then clap out a simple little sequence. Your child is listening to the rate and pattern of your claps. He should repeat it back to you. You can modify to add jumping or stomping in lieu of clapping. 
  • Play the “Letter a Day” game. Pick a letter and have it be the focus of your day. “Today we are going to focus on the letter B. Let’s see how many letter Bs we can find. Let’s try to say words that begin with the letter B. But first, let me show you what the letter B looks like.”  Everywhere you go, point the letter out in its uppercase and lowercase form. Practice making the /ba/ sound. Make a collage with the letter B. Play ball and say B words as you bounce or roll it to each other.  
  • Shop at home. Give your child a shopping bag. On the bag, write or attach a letter. Tell him to go around the house and collect things in his bag that begin with that letter sound. Talk about what he shopped for together. 
  • Make a name collage. Start by writing your child’s name on a large sheet of construction paper. Then look in old magazines and catalogs for items that start with the sound of his first name. Steven=stove, stop, stick, stone, stay, story. Let your child do some of the work.
  • Match letters to toys. Grab a few of your child’s favorite toys. Spread them out on the floor and make your own alphabet cards, making sure that you include some “correct” as well as “incorrect” cards. For example, say your grouping of toys consists of ball, doll, car, puzzle, and jump rope. Your alphabet cards would include the letters Bb, Dd, Cc, Pp, Jj. Throw in a couple of random letters as well, Rr, Zz, Hh. Have your child match the correct card to the correct toy. Practice saying the name of the object, as well as the sound the letter makes with your child.
  • Does this rhyme? Play this simple game in the car, in a waiting room, or even in the grocery story. Say, “I am thinking of three words. They are cat, bat, and ball. Which words rhyme?”

Be sure to check out and LIKE the FACEBOOK PAGE for SPEAKING OF APRAXIA.  Updated regularly with hints, tips, ideas, blogs, and more.  http://www.facebook.com/pages/Speaking-of-Apraxia-A-Parents-Guide-to-Childhood-Apraxia-of-Speech/235772599837084?ref=hl 

[This above was a modified excerpt from SPEAKING OF APRAXIA: A Parent’s Guide to Childhood Apraxia of Speech, Woodbine House, 2012. Like what you read here? Get the book! Available thru Amazon, B&N, and the publisher’s website, www.woodbinehouse.com]

Write on, Wednesday!

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By Leslie Lindsay

 

Know how there are some days you just want to write?  There’s an idea that is percolating in your brain and you just gotta get it down?  I love those days. 

I am not having one.  Well, I kind of am.  I have these ideas for my next project.  Nope, not the one I am revising that doesn’t even have agent representation yet.  But my next-next project.  Do I abandon my current revisions suggested from writing buddy, Christine to tackle those ideas for the future project?  It does, after all have a little bit of a seasonal creep theme (think: haunted). 

Yet, I feel obligated to do more with my work-in-progress before I tackle my percolate-in-progress.

Yes, us writer folks always have several ideas brewin’. 

Such a dilemma. 

Of course, I have spent the better part of the last two hours catching up on email.  And promoting the other book I have out–which has nothing to do with fiction–but rather a real-life problem affecting children and their families: childhood apraxia of speech (CAS). 

So, have I been writing?  You bet!  Am I a writer–of course.  It’s just now I am learning there isn’t enough time in the day to wear all the hats of a writer.  Whew! 

Write on, Wednesday!