Interview with “Speaking of Apraxia”
Hi Leslie! I’m so happy to have you. I want to start by asking, what made you decide to write this book?
Oh, I am happy to be here, Laura. I won’t pretend that SPEAKING OF APRAXIA was in any way ‘easy,’ but it did sort of present itself to me…in the form of my oldest daughter! I may have been a first-time mom, but I was also a child/adolescent psych/RN and *knew* something was a little amiss with my Kate’s verbal development. We didn’t want to admit that our baby wasn’t anything less than perfect; still something niggled in the back of my head when she wasn’t cooing and gurgling like most little babies. I cringed when others told me of their child’s first words. Mine pointed and grunted. My heart broke. When Kate was diagnosed (about 2.6 years of age), I wanted a book. I’m very bookish – and tangible – I like to be able to hold things and refer to them time and time again. Websites are great, but they can lead to a spiraling search. SPEAKING OF APRAXIA is a part of a mother’s mission to help her child, but most of all – I wanted a book, I figured there had to be others out there who wanted – and needed – this resource too.
You are quick to point out you aren’t an SLP, but did enlist the help of an advisory review board to include the latest research and technical information. Who was on the board and how long did this take for your research?
This was one of the more tricky aspects of writing a book about a motor neurological speech disorder for the parent community. I wanted it to be accessible to parents, but I also wanted to get the information right. Over the course of writing and researching SPEAKING OF APRAXIA, I had “bumped” into some extremely knowledgeable professionals at various conferences, schools, the community, and social media.
Diane Bahr, CCC-SLP provided much of the technical assistance when it comes to speech and language development. She practices in Las Vegas, NM and is the author of several books herself. Teri Kaminski-Peterson, CCC-SLP in in Minnesota and works so well with children and her book, THE BIG BOOK OF EXCLAMATIONS prompted me to connect with her. Amy, an astute mother raising girls in St. Louis, one of whom suffered from CAS chimed in with the “parent readability;” as did her child’s SLP on some of the more finer points of private practice speech therapy. A preschool-school based SLP who worked with my daughter read over the sections on school, as did Kate’s very first classroom teacher, Lisa Circelli. I knew shew as a winner when she lowered herself to the floor and spread her arms for a big embrace from my little redheaded sprite bringing me to tears. Kate was literally in ‘good hands.’
How long did it take? I don’t know…it’s like childbirth that way. Awful and tiresome and painfully intense. And then it’s over. You don’t remember, but somehow you have battle scars. And a precious reminder of your labors. Conception to shelf: 4 years.
You describe this in your book, but to give some background to those who might not know you, what age was your daughter Kate diagnosed? How frequent and often were her therapy sessions, and when would you say she resolved?
As mentioned earlier, Kate was 2.6 years old when she was finally diagnosed. I say ‘finally’ as if it were a long wait, but it really wasn’t. Most speech-language pathologists (SLPs) are more comfortable waiting to diagnose until the child is three years old. But three years (even two-and-a-half) is a long time to wait and to worry and to schlep your child to appointments. And have no answers. Kate was evaluated by her pediatrician who was concerned at 12 months. And again at 18 months. We saw a speech-path for the first time around 19 months. She told us Kate was “definitely delayed.” A baby sister was born. My husband was transferred out-of-state. We moved. We worried. We got a definitive diagnosis once we settled in Chicagoland. The diagnosing SLP still recalls how determined I was to get a “label,” saying I was probably the only parent who just came out and said, “So what is it?!” She said she knew without a doubt we were dealing with apraxia. An overwhelming sense of relief and then ‘now what’ enveloped me. I rolled up my sleeves and dug in! We were intense about our therapy sessions. Twice a week for about two years. Then we added feeding therapy (more on that below) so for awhile she was going to therapy three times a week! Gradually, we cut it down to twice a week (speech), then once a week (speech) and once a week occupational therapy (OT). By the time she was a first grader (6 years) we were finished with private therapy – Yahoo!
Many kids with CAS have co-morbidities such as Sensory Processing Disorder, Autism Spectrum Disorder, and/or Attention Deficit Disorder. These can all affect prognosis. Did Kate have any co-morbidities, and how is she doing now?
“You bet she does!” I say with a grin. It’s true: CAS is often a ‘package deal;’ a combo platter of CAS and…what-have-you. In our case, Kate had some sensory integration issues as a younger child (3-5 years old) requiring occupational therapy and feeding therapy (food textures, ‘remembering’ to chew, etc.–quite common for kids with CAS). We absolutely loved the combination of OT and Speech therapy (ST)! It was the wining combination for our daughter. There’s actually something to that: the vestibular system works in tandem with the speech centers in the brain – this is one reason why playgrounds are a great place to practice speech work. When Kate was five, her SLP thought there may be “something more going on,” and that’s when she was diagnosed with AD/HD. We added medication to help control the AD/HD when Kate was a first grader and it helped immensely. Kate’s speech became more organized as did her behavior. These things *can* affect prognosis, but there are so many other factors that come into play: parent involvement, school support, the child’s awareness of her (dis)abilities and her ability to self-correct speech mistakes, child’s temperament/intelligence, motivation. I may be missing some, but you get the idea. I’m happy to report that Kate is a happy, successful 4th grader – one of her teachers call her ‘wildly creative.’ She even has the writing bug like her ol’mom!
What do you see as the most important thing an SLP can do to help the parent in this journey?
Wow. This is tough. We’re all different and we all seek different services at different stages in the apraxia journey. I loved when our SLP listened. It sounds simple, but having an ear to bend and some validation is huge. As parents, we’re often at a loss of what to do – but we love our kids so much, we’d move mountains. Let us be partners, too. Tell us how and what we can do at home to stimulate and encourage speech. Don’t disregard our efforts or belittle our worries or concerns, invite us on-board and let us know our efforts matter.
How have you seen CAS awareness and information change over the years, or have you?
It’s changed incredibly! When I first started this journey, I didn’t know where to go for information – aside from the internet -and I felt kind of stigmatized sharing Kate’s “problem” with other parents, neighbors, even family. Maybe that’s part of the process of coming to terms with things, or maybe there’s just greater awareness. Over the years, walks have been added to most metropolitan areas, support groups have sprouted up, and now we even have Apraxia Awareness Day in May!
What would be your biggest piece of advice for parents when faced with this diagnosis?
Have faith. Partner with your child’s school and/or private SLP. Do your own research, but don’t freak out about everything you hear or read; you’ll need to access all your critical thinking skills because it’s easy to get overwhelmed or feel as if a diagnosis is all gloom-and-doom. It’s not, there is a light at the end of the tunnel. Apraxia is often short-lived; there’s a reason it’s called *childhood* apraxia of speech: it’s typically resolved (or resolving) by the time a child is ten years old. Sure, there may be qualities that remain at times, but this is something your child will overcome with the proper support and therapy from a trained SLP.
I really liked your chapter on things parents can do at home to help their child. You have so many creative ideas! Did you do all of these things and how often would you say your worked with Kate at home on her speech?
Thanks! Wow – that means a lot! We did most *all* of those things listed in the book – either at home, or they may have been things she did with her teachers at the school or her SLP in therapy. We took the approach of “every-moment-is-a-learning-moment” and pretty much exhausted ourselves (and Kate!) in the process. But that’s not to say parents *should* be super-tenacious in speech work at home. It’s not for everyone and kids need time just to be kids – exploring, getting dirty, crafting, experimenting, babbling with their toys. Encourage and be open to that. Instead of hovering, to be a ‘hummingbird parent,’ popping in when needed and allowing your child to take the reins/direct her own interests while you support.
Thank you so much Leslie for your time, spreading CAS awareness, and sharing your book with us for Apraxia Awareness Day!!
To get this book go here!
Leslie Lindsay is a former child/adolesent psychiatric RN at the Mayo Clinic and mother of a daughter with CAS. She is an award-winning author of Speaking of Apraxia: A Parent’s Guide for Childhood Apraxia of Speech (Woodbine House, 2012). Leslie and her family live in the Chicago area where she supports the apraxia community, volunteers at the elementary school, and has turned to her time to writing fiction. She hosts a blog of bestselling and debut fiction author interviews at www.leslielindsay.com. Like her and follow her on Facebook at: https://www.facebook.com/
Leslie A. Lindsay, R.N., B.S.N.
Award-Winning Author of Speaking of Apraxia www.speakingofapraxia.com, www.woodbinehouse.com
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