Apraxia Monday: Growing Up with CAS–A Kid’s Perspective

By Leslie and Kate Lindsay 9781606130612

This is an oldie, but a goodie…you may have seen it before on Scanlon Speech Therapy with Kimberly Scanlon, CCC-SLP but if not…then check it out!  This piece was co-writtn with my daughter, now an 8-year old incoming 3rd grader. 

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. 

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. Leslie Author Pic 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. 

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. 7f (1)

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. 

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 hard for me to read and write.  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)!  6c (1) (1)

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 : )

Bio:  Leslie Lindsay, R.N., B.S.N. is the author of the 2012 Reader’s Choice finalist as well as ForeWord Review Book of the Year 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.  [all photos are from the author’s personal archives].

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Apraxia Monday: More Milestones

By Leslie Lindsay

As I got to thinking, there are so many more wonderful milestones on our apraxia journey that just didn’t make it into last week’s post.  Here are a few more.  Remember, not every child with CAS will progress in the exact same way.  What may feel like milestones to our family, may be entirely different for yours.  And that’s okay. 

Here goes:

  • Just recently, Kate performed in the Reader’s Theater program at her elementary school.  She actually wanted to!  When a another mother–and neighbor–leaned over to whisper to me, “She did such a great job,” I got goosebumps.  Someone else noticed that my baby can speak in front of a group of people–and do it well.
  • The day Kate did not want to go to speech therapy.  Mom, doesn’t speech have a drive-thru?”  004
  • The day testing came back indicating Kate no longer had a speech delay–dismissed from therapy!  Yahoo : )
  • When I started my SMALL TALK group, Kate wanted to help stuff folders. It looks like you are doing something important.  Can I help?”  Of course!  She helped me fill folders with hand-outs and nametags. 
  • Daddy took the girls to a nearby kiddie farm.  They rode miniature horses and Kate’s little horse had to stop to go potty…and she came home all bright-eyed, a little smirk hiding behind her mouth, “My horsie go pee.”  We all died laughing. 
  • Another dad story–the mall turned over Santa at the holidays to reveal a giant Easter Bunny.  Kate walked past the bunny cottage and pointed, “No ho-ho.  Big hop-hop.”  She was utterly amazed. 
  • Finally, the book launch party a year ago (April 2012) which also happens to be Kate’s birth month…she introduced me, “And now I would like to introduce Leslie Lindsay…but I call her mommy.”  9781606130612

Apraxia Monday: Top Ten Moments of Our Apraxia Journey

By Leslie Lindsay

In the last few months, I really feel like apraxia has run its course in our life.  No longer are we schlepping our daughter to and from speech therapy, no more is the coffee table cluttered with books and promises of help.  At 8 years old (an incoming 3rd grader) Kate is able to talk–and sometimes too much!  But we do still struggle with the remnants of apraxia–things like sequencing and planning for writing expository papers, and that pesky little thing called math.  Overall, I am happy to share some of our top ten moments of apraxia.  Here goes:

10.  Hearing Kate say mama for the first time at the Minnesota speech clinic.  She was about 20 months–the “magic” that go her to say it: movement.Kate Gymnastics and Graduation 013

9.  Crying in the car on the way to work as I was chatting with our insurance provider on the cell phone.  “If your daughter’s lack of speech is impacting her ability to function, then we cover it 100%.”  (was it tears of relief or the seriousness that impacted me?)

8.  Getting the offical diagnosis.  Sure, it wasn’t a “fun” thing to hear, but at the time, I was just relieved to know what was slowing my child’s speech development. 

7.  Kate signing “I love you” for the very first time in an Indianapolis hotel room.  (about 2.5 years old)

6.  On the same trip, hearing Kate say “pee-pee” at the Baby Gap Store when she went–ahem, pee-pee in her pants all. Over. The.  Floor.  We walked out with new Gap capris.Fall 2009 108

5.  Her tiny little face in peering out of the school bus window at age three…on her way to preschool.  (and my tears)017

4.  The first time she put two words togeher.  “More, please!”

3.  When the SLP at the clinic nodded her head and said, “Sounds like the job is yours, mom…write the book on apraxia!” 

2.Holding and sharing  SPEAKING OF APRAXIA 91(2012) for the first time with Kate.   

1.  Hearing Kate tell a group of mommies at my SMALL TALK: ALL ABOUT APRAXIA group that “Apraxia isn’t serious…all you’ve got to do is love your child and take them to speech therapy.” 

What are YOUR top 10 moments?  Are you keeping track of them?  Try jotting down small milestones on your wall calendar…that way, when this this journey is all behind you (it will be!), you can look back and see just how much you and your child have grown.  Good luck! 

 

Apraxia Monday: Laura Mize and the Podcast

By Leslie Lindsay

If you aren’t familiar with The Laura Mize Group, then allow me to introduce you!  You’re in for a real–Southern–treat! 

(image source: beckyhiggins.com retrived  6.3.13)

Her warm, Kentucky drawl is the first thing you’ll notice when you hear her voice.  It ooozes sweetness and compassion.  It makes me wonder if she’ll offer up a peach cobbler or a glass of iced tea.   

Actully, I know nothing about her culinary skills, but I do know she’s a pediatric SLP.  Today, I had lovely opportunity to chat with her on the Laura Mize Teach Me To Talk Podcast on Blog Talk Radio (how to obtain this interview…not 100% sure, but as soon as I learn something, I will pass it on). 

Here’s a breakdown of what we talked about:

  • My personal apraxia journey with now 8yo daughter, Kate all the way from the “beginning”–when we first noticed a speech lag through speech therapy and up to present day.
  • The book.  The reasons I wrote it, how I went about my research, parent tips, how the book is organized, etc. 
  • Mostly we talked about how moms everywhere can embrace the diagnosis of CAS and equip themselves with the skills and tools they need to be effective partners in their child’s apraxia journey. 
  • Click here and listen to the 1-hour long show!  http://www.blogtalkradio.com/laura-mize/2013/06/03/165-expressive-language-development-in-toddlers–part-ii

Laura Mize, CCC-SLP reviewed some of her very favorite messages in SPEAKING OF APRAXIA which I thought I’d share:

The Top 11 Things You & your SLP(s) Should Be Doing for A Motor-based CAS Approach (page 118):

  • Intensive Services.  “Intense” will vary based on your child’s needs, your time and money resources, etc. but kiddos with CAS will do best with as much therapy as time and money will provide.
  • Many repetitions and Drills.  Make it fun, but be prepared to work with your child 5-7 days of a week in addition to your child’s time with her SLP.
  • Be systematic.  Start with simple speech tasks and work your way upward.
  • Jaw, Lip, & Tongue Strengthening.  Not needed for “just” apraxia.  If you child is also dealing with dysarthria, then perhaps they would be helpful.
  • “Motor Memory.”  Motor programming and getting those tracks to “stick.”
  • Auditory Discrimination.  Can your child “hear” when things don’t come out right?  Can you teach that?  Ask your SLP for tips and ideas.
  • Kids with CAS are very aware of what they can and cannot say well.   If your child flat-out refuses to say something, it’s often not because he’s just being obstainate, he probably can’t and knows he won’t be successful.
  • Self-monitoring.  Does your child know when to correct herself in speech?  This is an important skill that takes time to develop, but  should be something your SLP is working on with your kiddo.
  • Prosody.  That’s all about the rate, tone, stress of speech.  Rhyming and clapping out words, sounds, syllables…all very helpful!
  • Compensatory Strategies.  When your child needs a little help with something, can he find the words?  Can you make a word or phrase a little simpler?  Work closely with your SLP for these suggestions.
  • My favorite–give your child some success!  Everyone needs a little reinforcement.  Allow your child to bask in a little glory.  They deserve it!

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