Tag Archives: apraxia kids

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.

Apraxia Monday (on Thursday): Teaching the Teacher about Apraxia

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By Leslie Lindsay

If you are like me, then you have just spent a good chunk of your evening wondering about your child’s new school year.  Who is her teacher?  What time is the bus coming?   Do I have all of the necessary school supplies?  What about shoes?  That first-day-of-school outfit?  (It’s a big day for all that in my neck of the woods here in Chicagoland). 

But have you thought about how you might broach the subject of childhood apraxia of speech (CAS) with your classroom teacher? 

Like many, your child’s teacher may not know what CAS is–or how to help.  It’s up to you to inform them.  Short of giving them a copy of SPEAKING OF APRAXIA (Woodbine House, 2012)–okay, shameless plus–you can do a few other things to prepare yourself and your child for a successful year in the classroom. 

Teaching Your Child’s Teachers about Apraxia [excerpted from Speaking of Apraxia, Woodbine House 2012.  Available where books are sold) 

Do you wonder what you should tell your child’s teacher about apraxia?  Not all teachers will have specific knowledge on all special needs. Kate’s preschool teacher (you can adapt your needs to any grade) admitted that she didn’t know much about apraxia, but she was very willing to learn. She knew it had something to do with verbal skills, but that was about it.

It helped a little to give Kate’s teacher the scientific explanation: “It’s a motor-neurological communication disorder in which she knows what she wants to say, but just can’t quite get it out.” What really helped was when I said, “It’s like being totally exhausted and not able to carry on a conversation.” She got it then. I further explained that Kate had to work really hard to have even a simple conversation.    

Other explanations from parents you may consider adapting:

  • “You know that feeling of being tongue-tied, or having a thought on the tip of your tongue? Well, that’s how Adam feels most of the time.”  
  • “Ask someone how their day was, and then tell them they can’t use their words to tell you.

What’s a Parent to Do? Meet with the teacher as early in the year as possible and share with her specific information about CAS and how it affects your child. There is a fabulous “Dear Teacher” letter on the Apraxia-Kids website written by Sharon Gretz, MEd, the founder of CASANA (Childhood Apraxia of Speech Association North America). I urge parents to print it and give it to your child’s teacher. You can find the letter at www.apraxia-KIDS.org. Once on the page, head to the search field, type “teacher letter.” You’ll get several hits, but the one you want is a letter that is downloadable in PDF format. The neat thing about this letter is it gives suggestions on how teachers can help your child at school.

While you’re on the Apraxia-Kids site, look at the brochures about apraxia written with a lay-person in mind. Like the “teacher letters,” these brochures are downloadable and printable. Consider including one with the letter you give your child’s teacher. Make it into a little “welcome to my child packet.” Including a brief write-up on things about your child is very helpful, too. It doesn’t have to be long or fancy, just a few bullet points like this:

  • Fun, outgoing child
  • Likes art and being creative
  • Excels at gross motor activities
  • Slow to warm up, may need to be drawn into social situations with specific questions or play
  • Loves books

Of course, your descriptions may be different than mine! Now if every parent would do something like this for their child’s teachers (whether or not they have CAS), it would take a lot of guesswork out of teacher’s lives.

Here are some more tips on putting together an information packet for the teacher:

  • Give her a book (like this one) or DVD on Childhood Apraxia of Speech (“Hope Speaks” is available on the Apraxia-Kids website: www.apraxia-kids.org).
  • Provide a list of easy ideas that may help with speech in the classroom (refer to Chapter 9).
  • Remind the teacher that while your child sometimes has a hard time communicating, or takes longer than usual to respond to a question, apraxia does not affect her intelligence.  She does not have to simplify things for your child if she only has CAS. (Of course, if she has Down syndrome, fragile X syndrome, or another disability in addition to CAS, you will want to advise her about any learning difficulties related to the other condition.)
  • Offer to create a communication notebook or worksheet that can be shared between parent and teacher. We made worksheets on the computer. I printed out five of them Sunday night and placed them in Kate’s backpack for Monday morning. Each day her teacher filled them out and sent them home with Kate. This daily report gave me some talking points for Kate about her day.
  • Be open and available. In The Complete Guide to Special Education, authors Dr. Linda Wilmshurst and Dr. Alan Brue recommend that you keep your ears and mind open to new ideas from your child’s teacher or other school professional. They typically have lots of experience and ideas in working with kids that just might help yours. If you disagree with a suggestion, ask more about it. It’s part of their job to explain it.
  • Consider communicating some tidbits from the home front. For example, things like “Papa and Nana visited this past weekend,” or “Kate really enjoys the unit on frogs—ask her what we saw last night when we visited the neighborhood pond.”  This gives your child’s teacher something to ask her about and encourages verbalization on things that are meaningful to your child’s home life.

***LET US KNOW WHAT HAS BEEN HELPFUL FOR YOU IN THE PAST?  HOW HAVE YOU CONNECTED WITH YOUR CHILD’S TEACHER ABOUT CAS?***

Apraxia Monday: Dealing with the Dark Days

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By Leslie Lindsay

I am a day behind…but, here goes “Apraxia Monday” on Tuesday.  I’d like to share with you a few comments, emails that I have received from folks who have a child with with apraxia (CAS).

“Dear Leslie, I have a son with apraxia.  While he is in intensive therapy and progressing, I am an absolute wreck.  I have been anxiously awaiting the arrival of your book for months.  Bless you for all you have done to help us parents.”

And another….

“Dear Leslie, My 2.5 year old daughter has apraxia.  She has been in therapy since she was 18 months old.  Most days we go about our daily life without dwelling on apraxia too much–but I have days where I break down and fear for the future.  I need someone who can understand and relate.  It’s getting harder to see her grunt at people and have them stare at me as if I am a clueless parent.  Instead of driving her to [speech] therapy, I dream I am driving her to ballet class in a pink frilly tutu.”

I chose both of these emails for two reasons…

1.  They represent both boys and girls affected with CAS (the incidence of CAS is actually a little higher for males than females by about 4:1, but it affects both sexes).

2.  And they share how parents feel at the deep core:  “I am a wreck.” and “I dream of driving her to ballet….” 

It’s not easy having a child with apraxia.  There is a lot of strain and planning…the logistics of having a child with a special need can be overwhelming:  when to go to therapy (how to squeeze it into an already full life), what to do with siblings while your other child is at speech therapy, how to pay for it all…and then there’s just the plain ol’ coping with a special need on a personal level (dealing with unwanted stares from strangers, feelings of grief and uncertainty, frustrations, etc).

What’s a parent to do?!  (below is an excerpt from Speaking of Apraxia, Woodbine House, March 2012).

  • Determine how you keep your pitcher filled. We all need to fill our personal well from time to time. How do you do it? What do you need to feel energized and ready to go? It’s different for everyone. For you, it may be a morning jog, an afternoon nap, time on Facebook, a crafty enterprise, a phone call to a good friend, or daily prayer. You need to find and make the time to keep your pitcher filled.
  • Know that you need breaks, too. I guarantee you will feel better if you schedule a break for yourself. Did you know that employers are supposed to give employees a fifteen-minute break for every four hours of work? Even if you are an at-home mom, you are still working and you deserve a break.
  • Reclaim past hobbies or explore new ones. Always wanted to learn about spelunking or knitting? Why not absorb yourself in learning about something new? You may find that you become less focused on the problems (of apraxia) and more interested in something that revs you up.
  • Schedule time away. It doesn’t have to be a trip to theVirgin Islands, but go somewhere, even if it is just to the hotel down the road for a night (or your parent’s or friend’s home). Put it on the calendar. You are that important.
  • Connect with your friends. No doubt you will meet others who have a child with apraxia or other speech-language needs. That’s great. Share stories and feelings about your unique experience, but remember that you have other friends, too.Connect with friends who aren’t all about apraxia, too.
  • Join a Support Group.  You may want to look into a support group for parents and caregivers of children with apraxia. You’ll learn a lot, connect, commiserate, and have a unique bond with others. You can start by joining listservs at Apraxia-Kids (www.apraxia-kids.org)  and Speechville (www.speechville.com).  There may even be one in your local area like Windy City Apraxia (http://groups.yahoo.com/group/windycityapraxia/)  in theChicago  area. For help finding a support group, ask your SLP or early intervention team or even consider starting your own (see Chapter 16).
  • Remember that you are not alone. You have friends and family. Rely on them. Ask specifically for their support.
  • Learn about CAS and brush up on terminology that goes along with the diagnosis. You may want to seek out more information than this book provides. Go for it. If you don’t understand something your therapist is sharing with you, ask. You weren’t born knowing everything about speech and language issues. You will uncover lots of terminology and abbreviations.
  • Use coping strategies that have worked for you in the past. Whatever it is—getting a massage, heading to “Fatblaster” at the gym, eating a bucket of popcorn at the movies, or reading a juicy new book—it’s important that you take care of yourself.

What do you do to deal with the “dark days?”  Your ideas and insights may help someone else who is struggling. 

 

Apraxia Monday: Chapter 1

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By Leslie Lindsay

Welcome to the first installment of a series of excerpts of forthcoming, “Speaking of Apraxia: A Parent’s Guide to Childhood Apraxia of Speech” (Woodbine House, March 2012).  Here we begin at the beginning: chapter one.  You may have some suspicions that your child isn’t talking like he or she should; maybe you’ve heard of apraxia (CAS), but you just aren’t sure if that is why your little punkin isn’t chatting like all of the other children.

Consider these scenarios:

“Sarah, age 2, was a puzzle to her parents. She was obviously quite bright and alert. She knew the names of all the birds in her Big Book of Birds and would point to the cardinal, chickadee, etc. when asked. But she struggled to say even the simplest words.”

Jake was an active three-year-old who loved cause and effect, an engineer in the making.  He appeared to be a typically-developing child, with one exception: he was not talking. His grandmother kept saying, “Boys are late to talk–don’t worry.” But his parents were concerned. Could something else be going on?”

Do these stories sound familiar? Does your child remind you of  Sarah or Jake? If so, your child could have Childhood Apraxia of Speech (CAS).

I’ll admit, when I first heard of Childhood Apraxia of Speech, I was totally stumped. We hadn’t covered this in nursing school! So what is CAS, anyway? Like you, I had a ton of questions and concerns and little time to learn about it. But most of all—my child needed help. You may be feeling the same way.

Here’s some nitty-gritty details about CAS that may help steer you in the right direction for getting a diagnosis.  Remember, you need a qualifed speech-language pathologist (SLP) to make the diagnosis and provide treatment.

CAS is best defined by what it is not. Historically, it’s been one of the most debated disorders in the field of speech-language pathology. It took practitioners quite some time to find an easy, agreed-upon definition, list of symptoms, cause, and treatment. But they did!

The American Speech & Hearing Association (ASHA) offers the following 2007 definition of CAS*:

“A neurological childhood (pediatric) speech sound disorder in which precision and consistency of movements underlying speech are impaired in the absence of neuromuscular deficits.”

Let’s break this down even more:

  • Neurological refers to the nervous system (brain and spinal cord to start with).
  • Childhood/pediatric generally refers to the ages of birth to adolescence.
  • Precision and consistency refer to the accuracy of speech sounds each and every time they are spoken.  
  • Movements underlying speech refers to the movements of the articulators (lips, jaw, tongue, soft palate, hard palate) in smooth, sequential, and overlapping gestures necessary for intelligible speech.
  •  The oral structures of the mouth are tongue, lips, jaw, and palate.
  • Neuromuscular deficits are things like abnormal reflexes and weakness and incoordination of the muscles that are controlled by the brain to produce speech movements.

In plain language, kids who have been diagnosed with “pure” CAS have completely normal facial tone and musculature. Their reflexes are typically normal, yet they still can’t coordinate their internal thoughts, shape them into verbal communication, and produce it in a manner we can all understand. (“Pure” refers to the fact that these children have no other diagnosis-able neuro-developmental conditions; they are struggling with only CAS).

Next week:  Chapter 2–All About Speech

You may also appreciate these artices, “Imagine Being a Parent of a Child with Apraxia of Speech” www.nspt4kids.com/therapy/imagine-being-a-parent-of-a-child-with-apraxia-of-speech-cas/

Or, “Speech-based Activities You Can do With Your Child with CAS,” www.specialneeds.com/children-and-parents/speech-or-communication-impairment/speech-based-activities-kids

For more information & additional resources on apraxia (CAS), see Apraxia-Kids at www.apraxia-kids.org

Apraxia Monday: How sibs can help with apraxia

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By Leslie Lindsay

I have two kids.  Both of them have red hair.  Both of them have blue eyes.  Both of them of girls.  But that is where the similarites come to an end.  You see, one of them is very, very precocious (read: talkative) and the other, well…not so much.  You know my comparison has nothing to do with love.  It has to do with Childhood Apraxia of Speech (CAS).

My oldest daughter has CAS.  Her younger sister does not.  When we first learned of the apraxia diagnosis, I was very focused on helping my older daughter get the help she needed.  I shuffled her to and from therapy, I got her into a great language-based preschool program.  I worried about and read about apraxia.  I cried.  I laughed.  I saw glimmers of hope.

Now, at six years old, my daughter with CAS is doing a world better.  But, being the oldest, she’s a little sensitive about her speech skills not being quite “up to par” as her chatty little sister.  What’s a parent to do?!

A few weeks ago, I interviewed Angela Baublitz, mother of a daughter with CAS and author of “I Want to be Your Friend,” (a book intended for children about CAS available through Apraxia-KIDS, www.apraxia-kids.org).  She mentioned several tips for siblings in regards to CAS.  Keep in mind, though that Angela’s son is older and it’s her daughter who has CAS.  It may be easier for older non-CAS sibs to take on the roles Angela mentions:

“[My son] protects his sister a lot.  Should someone start to make fun of my daughter for the way she talks, he is right there defending her.”  She also gives these tips to parents:

  • Keep open communication  with the Non-CAS child so they can understand what the CAS child is going   through. 
  • Also make sure the Non-CAS child has free time by themselves to  play with other children and alone time with parents.
  • Make sure the Non-CAS child is sharing how he feels with you. 
  • Try to go on with life with a positive  attitude, treat both children the same
  • Socialize with other families–do not isolate your family from this speech problem
  • Have fun in life

I’d love to hear from you all–how have you balanced the CAS diagnosis with the other demands and children of your family?!  Email me today, leslie_lindsay@hotmail.com or post a comment in today’s blog.