Apraxia Monday: Summer Re-run Series-“You Just Gotta Practice!”

By Leslie Lindsay

This is one of my favorite apraxia memories. Read on and find out why:

“Apraxia…You just gotta practice!”

By Leslie Lindsay

I am thrilled to have the opportunity to be 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.”

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 2^nd 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.

aPrAxIa MoNdAy: Summer Re-run Series

Reading Green Eggs and Ham with Apraxia

By Leslie Lindsay

       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.*

Even as a baby, Kate rarely babbled and cried; she was beautiful and unique with red hair and bright blue eyes. She was, in a word, “perfect.” So why were we worried? After all, she could understand everything we said, even the big words. And what was so wrong with having a quiet, happy toddler?

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 2^nd 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.

         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).

   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 (1^st 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.

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. 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). You can also follow her on Twitter @LeslieLindsay1, the “Speaking of Apraxia” Facebook page, as well as her sister blog, http://www.leslielindsay.com

[“Green Eggs & Ham” cover image retrieved from www.fredrickville.com on 7.6.14, interior page from www.campacademia.com on 7.6.14, Sandra Boynton books from hecticharmony.net  on 7.6.14]

ApRaXiA mOnDay: Summer Re-Run Series

Talk of the Town: Gossip Queen & Child Development Expert Answers your Most Pressing Questions.

Today’s Topic: Childhood Apraxia of Speech (CAS)

Monday, July 16th 2014

By Staff Writer

Dear Miss Talks-a-Lot:

 My 3 year old son has so much difficulty talking. It’s like he knows what he wants to say, but he can’t quite get the words out. Everything else [developmentally] seems to be right on target, yet he just jibbers and gestures. What could be going on?

–Frustrated in Colorado

Dear Frustrated in Colorado:

It sounds like your son may be suffering from Childhood Apraxia of Speech (CAS), this neurologically based motor speech disorder is characterized by the inability to connect thoughts with verbal output. It’s as though the child knows what he wants to say, he just cannot coordinate the muscles of articulation with his brain. Often, kids with CAS will gesture or create their own words and phrases to get their needs met. Your best bet would be to have him evaluated by a qualified speech-language pathologist(SLP) who has a background in childhood apraxia of speech. From there, you will receive an official diagnosis, a treatment plan, and suggestions for next steps.

Dear Miss Talks-A-Lot:

I have heard of this new book, SPEAKING OF APRAXIA and wonder what your thoughts are?

–Curious Mom in Missouri

Dear Curious:

So glad you asked! SPEAKING OF APRAXIA was published in 2012 by Woodbine House, a leader in producing quality special needs books for parents, professionals, and caregivers since 1985. It is my understanding that it is the first non-academic book designed exclusively on the subject of CAS. Written by mom and former child/adolescent psychiatric RN from the Mayo Clinic, this book embodies everything the author, Leslie Lindsay thought about, worried about, and learned about during her course of raising a daughter with CAS. She wanted a book when her daughter was diagnosed, but was disappointed in the options available. Plus, she wanted to help others walking the same path. SPEAKING OF APRAXIA truly is a labor of love. It has received national and international recognition from SLPs, parents, and educators. A Georgia-based parent says:

“A comprehensive encyclopedia on childhood apraxia of speech (CAS) & self-help book for both parent and child. In addition to having over 400 pages full of facts, Leslie chronicles bits & pieces of her own daughter’s journey with apraxia.”

Anita, a speech-pathologist in Sao Paulo, Brazil shares, “Few professionals know Apraxia. Many children are without diagnosis, teachers and educators and parents completely unaware. I bought your book and loved it, it is very practical and thorough and sure I can use with parents of my patients….surely, it will be very useful for all children with Apraxia.”

For more information, or to obtain your own copy of SPEAKING OF APRAXIA (Woodbine House, 2012), head over to http://www.amazon.com, http://www.barnesandnoble.com, (in-store, too), as well as http://www.woodbinehouse.com

[this is a mock newspaper article. The quotes are real, but names have been changed to protect privacy.

The Teacher is Talking: Summer Break

By Leslie Lindsay

It’s SUMMER BREAK…and this “teacher” has gone fishin’. Okay, more like stumbling around the rocky ruins of Ireland.

So, this is my last post on Tuesdays till mid-late September.

If you’re interested in back-to-school ideas, routines, etc. there are plenty of archived articles on this site, as well as my sister site, http://www.leslielindsay.com. Just type in your back-to-school questions, concerns, woes, worries in the “search” field and boom-bang-wow–you’re sure to find plenty, including tips on apraxia and school.

In September, we’ll be launching some new blog categories/topics:

• “The ADDed benefits of AD/HD” to run on Tuesdays (late October-November)
• “Team Talk Tuesday” about the stressors and pressures of team sports, but also the benefits of a competitive team sport.

Till then…see ya in September!

[Gone Fishin’ image retrieved from og.typepad.com on 6.28.14]

 

ApRaXiA mOnDay: Summer Re-Run Series

By Leslie Lindsay

This one always gets lots of interest…and it’s one of my most bittersweet blogs. Read and see why.

Imagine Being a Parent of a Child with Apraxia of Speech (CAS)

By Leslie Lindsay, R.N., B.S.N.

At two years old, Kate was a beautiful, energetic, and happy toddler. With the exception of one word—hi—Kate was as quiet as a mouse. We wondered if something was wrong. Even as a baby, Kate rarely babbled and cried; she was beautiful and unique with red hair and bright blue eyes. She was, in a word, “perfect.” So why were we worried? After all, she could understand everything we said, even the big words. And what was so wrong with having a quiet, happy toddler? 

But there were times my heart would sink. Gaggles of women who had all been in the same childbirth class a year or so earlier met up for our summer book discussion. They were chattering about how their children were saying new words every day. One mother proudly shared, “Oh, Maddie said elephant yesterday at daycare. I hate that I missed it.” I pulled my lips into a tight line and let out a sigh. If only my baby could say, ‘mama’ I thought.

Fast-forward a year or so. We learn Kate has Childhood Apraxia of Speech (CAS). Characterized by a child’s inability to express themselves verbally, CAS is a complex neurologically-based motor speech disorder. It is serious and requires intense and frequent speech therapy by a licensed speech-language pathologist (SLP). Part of me was relieved: now we know what to call this “reason” for Kate’s lack of verbal communication. But another part of me was overwhelmed, nervous, and anxious: now what and why?

It was time for me to put on my proactive parenting cape (forget Supermom), this diagnosis called for a little more. I started gathering any and all information I could on the subject of CAS. I joined listservs and read old text books on the subject. I picked my SLP’s brain. I worked with my daughter at home, in the car, and everywhere in between. I enrolled her in the special education preschool. And she improved. Yet in the meantime, we dealt with so many quizzical looks, unwanted advice, and clueless peers.

Imagine going to the grocery store with your toddler. The clerk makes small talk with you and your child. Your child can’t answer when asked, “What’s your name, cutie?” Instead, she grunts and smiles. The clerk turns to you, perplexed as if to say, “doesn’t your child know her name?”

Try taking your 4-year old to see Santa at the mall. He can’t tell the big man in red what he wants for Christmas, even though you know he’d love a new bike with training wheels. Instead, he makes a spinning gesture with his hands and goes vroom, vroom. Santa chuckles, “Oh, a toy car!” But you know that’s not it. So does your son.

What will you tell the kind, grandmotherly babysitter who tells you, “Oh, don’t worry. Some kids are just late-to-talk. She’ll catch up. Maybe you aren’t reading and singing to her enough? Do you go to mommy-and-me classes so she can interact with other kids?”

How will you know what your child wants when he just stands and points to the top of the shelf at the many items it could be? You ask, “Do you want the blocks? No. Do you want the farm book? Oh, I know…you want your car!” But, instead he breaks down in tears and walks away.

How does your heart break when you overhear her peers say, “Julia can’t talk. Let’s not ask her to play with us.”

What’s a parent to do?

• Love and accept your child for who he is. Of course you didn’t ask for your child to have CAS. Neither did your child. Focus on finding the resources your child needs the most—a qualified SLP.
• Talk to your child. Speak with her as though you expect an answer. Just because she can’t speak back in a way you understand, she understands you. Make your communication with her matter.
• Provide opportunities for your child to absorb speech and language. Read to him, study the illustrations; illuminate the details. Point out everything you can about the environment. “Look at the birds. Do you see the blue birds? Beautiful blue birds. Can you say bird?”
• Be patient with your child. Having a child with CAS takes time to remediate. It’s not over in a matter of a couple of speech therapy sessions. It can take years to get your child speaking at developmentally-appropriate levels. Talk with your SLP about ways to monitor progress. It’s all about baby steps.
• Be patient with yourself. Take a deep breath or a give yourself a time-out when you find yourself losing patience. Allow yourself to do other things besides parent a child with CAS. It’s important for your mental health.
• Allow your child to be a “regular” kid. This may mean “coaching” social play. You may have to introduce your child to a group of peers, “This is Max. He’s a fun kid, but he’s still working on his words. Can he play with you?”
• Bite your tongue or educate—diplomatically, of course. When someone asks you about why your child isn’t talking like every other child, you can grin and bear it, or you can simply tell them, “Brooke has Childhood Apraxia of Speech. She sees an SLP each week. We’re working on it.” Most folks don’t need or want more details than that.

Soon, you’ll be hearing things like, “Mom, can I have twelve bucks?” like I did the other day when my daughter with apraxia came home from school one day and wanted to go to Disney on Ice. You’ll be hearing words and phrases like, “Whatever,” and “I didn’t do it.” But the most touching of all, is when you hear these precious words: “I love you, mom.”

….Imagine being a parent of a child with CAS.

[supermom image retrived from naptimethoughts.com on 7.6.14]

The Teacher is Talking: All About…cringe…Periods

By Leslie Lindsay

Just the other night, as I was tucking my little redhead in bed, I commented on the color and texture of her hair, “It looks like your hair is getting a little darker and wavier as you get older.”  (A whole 7.6 years, mind you). She shrugged a bit and said, very matter-of-factly, “Is that because of my period?”

“Your what?!” I choked out.

“My period,” her blue eyes stared back at my own. She was dead serious.

“No, no, no…you don’t have a period, silly.  You’re way too young. And your hair really has nothing to do with it.”

“Oh. Okay.”

If you recall, earlier this summer, I was shocked to find my daughters–who live a very normal, unprecocious life–putting their Barbies in compromising positions, saying they were “making sex.” Again, I about coughed up my dinner.

And promptly ordered THE CARE AND KEEPING OF YOU (American Girl books, Pleasant Company Publishing). We began reading and discussing this very G-rated book as a family before bedtime. Things like how to stay clean, what to eat, how to exercise…and yes, how your body will begin to change.

The word ‘puberty’ has come up. So has ‘your period.’ In all honesty, I’m thankful she’s hearing it all for the first time in her soft pink-and-green-stuffed-animal-filled bedroom with mom, dad, and big sister sitting nearby, sometimes the aforementioned basset hound.

Could she have gotten the words ‘puberty’ and ‘period’ switched? Sure. Does puberty affect hair? You bet. But, we’re so not there. Seven, remember?

Reading this book now has been a good move, parent-wise because the way I’ve always heard it, “the talk” should come in bits and pieces, not all at once. It also shouldn’t come on the very day of say, that first period. A little heads-up won’t hurt, right?

Just to illustrate further, my writing critique partner helped her daughter shave under her arms recently. It was a battle. A ticklish one, at that. Her response afterwards, “Gee, I really should have talked with her about these things sooner.”

Okay, so I’m not a freak for reading a body book to my 7-year old and her big sister. Well, the jury is still out.

She is also aware of how different kids develop at different rates. One just has to look at the population of middle school to understand that. Our response, “Everyone has a unique body, and it develops at different rates. There is no race or competition; we all get there in the end.”

Solid advice for life, right?

And then I came across this video that I find absolutely hilarious. In fact, we just may do a little something like this when the time comes. Wink, wink.

http://blog.petflow.com/this-girl-faked-her-period-and-got-what-she-deserved/

That’s it…class dismissed! Till next time.

[image source from inside THE CARE AND KEEPING OF YOU retrieved from www.americangirlpublishing.com on 6.28.14]