SLP Mommy of Apraxia

Tag: Apraxia

Why I fight: Inspiration from Ronda Rousey

Ever since I met Ronda Rousey May 29th, 2015 – the response I received from my post has been my most popular post ever by far! Since that time, I went on to read her book and became more inspired than I could have ever imagined. Though she didn’t mention her speech impediment was apraxia in her book, I still had her promise from that night, saying she would say it was apraxia in every interview forward, ringing in my ears.

As I have gone onto read more about her, I realized there couldn’t be a hand-picked better person to represent our kids with apraxia.

On the surface she seems like a bruiser. She’s made comments like “I’m going to break her arm and I won’t care,” that haven’t gone over well in the press. In case you’re wondering, that’s why her fight song is “Bad Reputation” by Joan Jett. She has said she doesn’t care about her reputation, which also hasn’t gone over well in the press. In another interview she said she doesn’t have PR people telling her what to say, and she doesn’t want them to. I think it’s brilliant. Kids with apraxia work so hard to say anything at all, I admire her for saying what she wants to say now. She worked for it. She deserves it.

As her fight August 1st draws near, I tried to rally the apraxia community to hashtag all night to get her to be a champion for our kids too. People were excited, but then they began to worry.

“Has she ever actually said she had apraxia?”

“Are you sure she has apraxia?

“What if she doesn’t want to say she had apraxia? Shouldn’t this be a personal decision?”

I understand their worry. I could very well be perceived as “outing” her. She could be mortified. Even worse she could be angry, and I DO know you don’t want to piss Ronda Rousey off (excuse my language)!

Here’s what I do know though in her own words. Ronda Rousey doesn’t

“give a damn about her reputation” and in her book she says,

“I fight for those who can’t fight for themselves.”

I know that when she finally succeeded in making a store clerk realize that the “balgrin” she wanted for Christmas was Hulk Hogan, she learned,

“This was an early lesson on the importance of always believing that if I wanted something bad enough and tried hard enough, I could make it happen.”

I know she made the president of the UFC eat his words because of her persistence when he promised her women would never fight in the UFC. I have to believe she won’t be mad at my persistence, but see something she has in herself.

I know that she said when her mother moved her from California to North Dakota, she described it as

“this arrangement would provide an opportunity for me to find my voice – literally” before CASANA ever existed and coined the term “Every Child Deserves a Voice.”

I know that she quoted her grandma as saying,

“God knows what He’s doing, even when you don’t,”

and I have to believe He was involved when I read one interview that sparked my interest and that night I was standing in line at a book signing where she looked at me incredulously and said,

“Apraxia. Yes? This is what they think I had,” before posting the apraxia brochure I gave her a short two hours later on her facebook and twitter accounts.

I know Ronda is far from ashamed of her personal struggles. If she were, she wouldn’t have so openly admitted all of them in her book from dealing with her father’s suicide, to battling self-esteem issues as a child, to falling into bulimia, or to living in her car. In fact, if you read her book, that’s why she fights. She doesn’t hide her struggles, she’ll beat your ass if you even accidentally insult them. In her own words:

“I am a fighter. …..it has been that way since I was born. I fought for my first breath. I fought for my first words. I fight to make the people who love me proud. To make the people who hate me seethe. I fight for anyone who has ever been lost, who has ever been left, or who is battling their own demons. Life is a fight from the minute you take your first breath to the moment you exhale your last. You have to fight for people who can’t fight for themselves.”

I know that in an interview leading up to her fight in Brazil, she was asked why she didn’t ask for it to be in the States, and she replied she had promised the people of Brazil she would be back and she said,

“I’m a woman of my word,”

further reminding me of her words when she looked me straight in the eye that night when I asked her if she would say apraxia instead of speech impediment here on out and she said,

“I will. I really will.”

If she denies it, I will fully accept the mia culpa. I will be devastated, but the blame is on me. I will own it.

I have to say though, that devastation is still worth the risk. It’s still worth pursuing. I fight too. I fought for my daughter to find her voice. I fought and still fight to get her the services that she needs. I fight every day in my job for each one of my clients to also find their voice. I fight for this now, because apraxia needs a face. I fight for this because I want to tell my daughter and my clients that not only can they beat apraxia and live like any ordinary person, but if they want to, they can go on to be extraordinary too…just like Ronda Rousey.

Will you join me? Tweet, facebook, or instagram August 1st with the hashtags: #UFC190 #herfightourfight #knockoutapraxia #strongerthanapraxia #tapoutapraxia

July 27, 2015
Walker Spotlight: An SLP shares her view on why she walks for her clients AND a bigger cause, by Lynn Zimmerman

Last fall, I attended the 2014 Denver Walk for Apraxia with a client and his family. In my private practice, I have the privilege of working with many children with CAS and appreciate deeply the work of the CASANA community. Walks such as this, are a beneficial experience to share as a Speech professional with the community of families connected to the cause.

As Speech Language Pathologists, we dedicate hours, weeks, and sometimes years to developing and nurturing a working relationship with each client — focused on maximizing the child’s communication potential. However, within such relationships, there is rarely opportunity to bond with a client without a progress-centered agenda. Participating in Denver Walk for Apraxia gave me a chance to share leisure time with a long-term client and his family. With no speech drills to practice, we instead spent the morning in the beautiful Colorado sunshine. Charity walks are occasions that, on the surface, raise money and awareness for a cause. But to a child, too young to understand the mission, the event is a celebration of their hard work. It’s a party full of hope and excitement. As a professional, it was heart-warming to share with a client and family how much the community supports and embraces them.

These charity walks draw in hundreds of cheerful, open-hearted people to a festive day in honor of families living with unique circumstances. To these families, who can come to feel isolated, such an event is a tangible manifestation of how supportive and optimistic the world can be. It is an opportunity for children, like those we see on our case-loads, to have fun amidst a friendly gathering in celebration of those on a common journey. Every day, parents strive to balance their child’s intense therapy schedule, frustrating social interactions, sibling relationships, and much more. But, at the event, I delighted in seeing parents bond as peers over their shared experiences and mission.

While spending time with my client celebrating a charitable mission, I reflected on the idea that, as health professionals, the focus of our practices is on enhancing the lives of individuals. On this single-child basis, working with an SLP can be life-changing but a charity walk is an opportunity to further that statement by standing up on a larger scale for the global community of children like those we help. Donating to a charity that supports research and advocacy for people with communication challenges is a chance to help not just one child at a time, but to promote hope and long-term change in the scope of the cause.

Lynn Zimmerman MA,CCC-SLP is the owner and primary clinician of Cobblestone Speech Language and Learning LLC, a Littleton, Colorado based pediatric Speech and Language private practice.

July 13, 2015
Apraxia Walker Spotlight: My renewed faith and hope in my Shining Star by Jenny Boncich

It goes without saying that all my babies are amazing and wonderful! It’s true. When I delivered my 3^rd child, I didn’t know it at the time, but I had just given birth to a star! A shining STAR! I know, I know, every woman believes her child is a star! But the kind of star I am talking is pretty special. My son Mark was born with Childhood Apraxia of Speech (CAS). CAS is a neurological motor planning disorder. In a nutshell my son’s brain isn’t able to send the right messages to his mouth, lips, cheeks, jaw, or tongue; so he has great difficulties in executing intelligible speech. His words are understood by only about 65% of unfamiliar listeners. In addition to coordinating his speech, our son also has great difficulty globally with his body movements. That means he struggles with coordinating all of his body, and that just plain SUCKS!

At about two years old I noticed the beginning of Mark’s symptoms. No babbles, not walking, etc. I turned to our pediatrician and as much as I loved that man he didn’t have a lot to offer. A doctor is supposed to know EVERYTHING! What the heck was I to do?? Oh yeah… GOOGLE THAT S*$%!! I surfed the web hour upon hour upon hour. I was in the fight or flight mode. I needed to put on my suit of armor and begin the good fight! In doing so, I stumbled upon CASANA. Thank God I did! As I began reading the family start guide I just kept nodding, “yep, that’s Mark. Uh huh that’s Mark. Why yes….that’s my kid!!!! I took all the information I had devoured and went back to our pediatrician with the diagnosis. He was as humble as he could be and said, “You’re onto something here!” He even let me wear his stethoscope for a few minutes, as it was I that delivered the diagnosis (I’m just kidding). Over the next couple of months, together we started making the necessary appointments to have him professionally diagnosed by starting Speech Therapy and Occupational Therapy.

What got me through those first few years were other parents of children with apraxia, my rock solid husband and friend, and CASANA. It felt good to know I wasn’t alone in this journey. There were other families out there enduring the same things. What helped me get through this were other Facebook groups. I became educated and encouraged. It wasn’t long before my family began participating annually in CASANA’s awareness walk. I really looked forward to CASANA’s annual Apraxia walk, as it was a time we celebrated Mark and all the hard work he done throughout the year. We walked with our family and friends and it felt GREAT! It was Mark’s day to SHINE like the star he is.

However…..

The years have continued to come and go. My son is now 11. We have climbed many MOUNTAINS. We do live in Colorado so that isn’t too amazing. However,

I’m not talking about a 14’er. I am talking the things most of us parents of typical children take for granted. Crawling, walking, babbling, cooing, coloring, writing, potty training, tricycles, 2 wheeled bikes, blowing bubbles, buttoning, zippering, tying shoes, play dates, sports, and singing. The list is literally ENDLESS! Every single thing has been a CHORE for my child. And I began to get really pissed off about it. It began to sink in that this was a more severe diagnosis then that of most children. I saw many of the kids that I first met on walks beginning to resolve the issues they had with Apraxia, while my son continued to have such slow progress. It all became too much. Denial after denial from insurance companies, and then ultimately thousands and thousands of dollars in private speech therapy, battle upon battle in conference rooms during our annual IEP meetings fighting for what seemed to be so obvious in what he needed and deserved, the constant stares from strangers, one even asking, is he death?” (Wanting to say, “No, he’s alive…oh, did you mean deaf?”) But instead answering kindly, “No he’s not deaf but we use sign language for expressive communication and…..blah…..blahhhh, blaaahhhh!”

UGH! “Make it all stop!” I would scream in my head! It was obvious that the once very optimistic part of me gave into the GREAT APRAXIA MONSTER, and I became a very cynical, defensive and angry woman. I actually withdrew from the people and things that once made me feel like we were not alone. Last year, I purposely and proudly boycotted the Annual Apraxia Kids Walk. There take that! I am done. I’m going to take our toys and go play somewhere else. Very immature, I know.

That is until I was fortunate enough to come across a very well written blog from a woman I had sat next to in one of CASANA’s conferences. The one in Denver a couple of years back. I remembered her because I thought how LUCKY her daughter was in having a mom who was an SLP!! If you’re going to have an Apraxia diagnosis, how blessed to be born to a mommy who knows how to help you from the get-go!

I began reading Laura’s blog about how she and her daughter Ashlynn got to go to a book signing. The book was about a woman wrestler. A BEAUTIFUL woman wrestler, Ronda Rousey, who not only wrestled in a ring with opponents, but that also once wrestled with WORDS! The book was written about a famous person. And this person once had APRAXIA too! As I was reading the blog, I could literally feel the excitement and passion Laura had experienced in her meeting with someone that once had what our children are struggling with. She overcame Apraxia, and then went on to lead a very successful life….despite her early struggles with Apraxia.

And that’s when it happened.

Because of this one very simple, loving, blog I began to cry. TEARS? Yes Tears! And lots of them! Happy ones. Because it set in motion a familiar feeling in my stomach, like that of a roaring fire. A roar that made this mom want to start fighting the good fight again! That post not only helped me regain faith, it also restored hope in the fact that my son will someday resolve his struggles with Apraxia.

Thanks to Laura’s enthusiasm spilling over and onto me, I am VERY proud to say, “WE ARE WALKING” in CASANA’s walk this September. We have invited our friends and family to once again rally around our SHINING STAR and make the day all about him. We look forward to celebrating his amazing resilience, stamina, and success. I can’t wait to get TEAM MARK THE SHARK back on the track… in oh so many ways!

July 7, 2015
Walker Spotlight: Why I walk for CASANA, by Monica Mayhak

Our story is much like many other families’ stories. A relatively quiet baby, the missing “mama” and “dada,” the doubt creeping in. For us, it was easy to know that something was off. Our little Emmett is the youngest of six. We knew how this all worked and something wasn’t working here. After five typical and healthy children, when Emmett was 18 months old we had our first experience of asking our pediatrician if something might be wrong. Looking back, I realized I felt embarrassed—was I overreacting? I didn’t want to bother her with this if it was just that he was a bit different from our other children.

But she was concerned too and referred us to early intervention services. I remember going for Emmett’s evaluation. We walked in, just Emmett and me, to what felt like a roomful of people. It was only about three evaluators, but it scared me. They played with Emmett one-on-one, having him try to go down a slide, stack blocks, do pretend play. As I watched, it slowly dawned on me that he couldn’t do any of these things. When one of them looked at me and asked, “Does he always drool this much?” my heart sank. Why yes, he does, and that is concerning me too. They didn’t give me any answers then, but when I got in the car and called my husband, I told him, something is really wrong here. I think really, really wrong.

But I didn’t know what. Emmett qualified for services, so a speech therapist came to our home one day a week. This was supplemented with some meetings with an OT. Then, because Emmett couldn’t get through a therapy session without shutting down or hitting or just doing his own freaky things, they called in a DI. “What is a DI?” I asked. A developmental interventionist. Hmmm, what is that? We were told they used to be called “behavioral therapists.” Great I guess. She’ll help us, but what is going on? No one could tell us.

So I did what probably every other confused mother does—turned to Google. I typed “2 year old can’t talk.” And boom—got lots of hits. Ok, not as helpful as I thought. Lots of ideas to encourage kids to talk and lots of reassurances that it all gets better on its own. Hmmm…ok, let’s try “3 year old can’t talk.” And again, boom—lots of links. But this time, they start referring to the possibility of autism. Emmett doesn’t have autism, so this wasn’t making sense to me either. Keep digging, going up in age, and deeper into links and I ran into my first encounter with apraxia.

This was also my first encounter with CASANA. I read and read and read and read. And cried and cried and cried, because this was describing my son. At our next speech therapy session, I asked the SLP about it. She said, “I’m not really familiar with that and it isn’t diagnosed until they are older.” And that was that. For her. But not for me. Back to the internet and reading more and more.

And then, God mercifully gave us hope. In looking around I found that CASANA was putting on a small workshop here in Denver. Perfect! I’ll go to that! Looking back now, I realize how extraordinarily blessed we were to have this all line up like this. I could have easily missed this workshop, it could have easily not been scheduled here in Denver, I could have easily thought it wasn’t worth it. Sharon Gretz was the presenter. Didn’t know anything about her, but like many families with a child with CAS, I do know her now. And she is our hero!

I attended the small workshop, absorbed everything, and then cried all the way home. Sobbed really. I went home to my husband and told him “we are doing everything wrong!” I realized that we had not been addressing his needs correctly because we simply did not know how. But this moment of despair disappeared quickly, and I realized that I had found something else besides information at that workshop. It was hope.

But that fear that I felt when I first took Emmett to be evaluated got big and ugly. I was so very, very afraid. I told my husband, “I can’t do this.” He is a rock and said to me, “You are going to do this. We are going to do this. This is what God is asking us to do. He gave us Emmett…how can we say no?”

So now we knew. But what to do from here? We found a private SLP who understood apraxia. She helped us to understand and started to work with Emmett. For a couple of years we worked with her and made some progress. Emmett’s behavioral issues constantly got in the way, but she was able to help him with that and help us understand. It was eye opening to see how I could help Emmett.

And I began devouring everything I could find about CAS. I turned to CASANA’s resources more and more. And then another miracle! I learned that the national conference was to be held in Denver—it felt like my own private miracle, that God worked it so that I could go! I could never have attended it without it being in my own backyard.

It may sound melodramatic, but that conference changed our lives. My mother had passed away a few short weeks before, and because I had spent six weeks caring for her in my home, Emmett’s needs got lost in the shuffle. That conference was an incredible boost for us, a new beginning in a way. I was exhausted at the end of those days—my brain trying to keep everything. Exhausted!

And it was like meeting rock stars! David Hammer! Ruth Stoeckel! Dee Fish! Nancy Kaufman! (I sat down at her session and thought, “I HAVE HER CARDS!!!” That is how geeked out I was.) I absorbed everything. And learned and learned and learned. So I left there with information, motivation, ideas, and most of all hope.

I discovered CASANA’s webinars. Fantastic! It is like being able to have those conference sessions in your own home. I have attended many of them and besides learning more and more, they became important periodic motivators for me. They are a reminder that I need to keep building knowledge and keep fighting every day for him. It is so, so easy to get discouraged–these webinars are great helps for my heart. The webinar presenters are familiar faces from the conference. It is like having a friend, who really cares about my child and my family, sit down with me to give me new information and some needed encouragement.

We then threw our hat in the ring to see if we could qualify for an iPad for Emmett through CASANA’s iPad for Apraxia Project. Our SLP helped us with the application and we did qualify! Emmett’s iPad is just his. He doesn’t share it with anyone else and it is loaded with speech apps and learning games. The ease of using the Ipad with Emmett gave us a new way to help him, and that now familiar dose of hope that only CASANA could provide us.

It was after that we had a change in health insurance and thought that for the first time, we had a shot at getting coverage for Emmett’s treatment. While we were sad to leave our SLP, I realized what an opportunity this was for us. I looked around, and in doing so ran across mention of CASANA’s bootcamp attendees. I wondered if there was anyone from our area who had attended. I can’t remember how I stumbled across it, but I saw mention that Laura Smith from the Denver area was in the current class. Score! I then found out that she was working at a clinic that could help us with insurance. Score again! Our insurance didn’t change until October, so I began to see if I could make this work. To be honest, I began stalking Laura a bit on the internet—even found her picture!

So, as you can imagine, when I saw her at the Denver Walk for Apraxia, I had to talk to her! I don’t know if she remembers, but I probably came across as a crazy person. I went up to her and I think I said something like, “Are you Laura Smith? I’ve been stalking you on the internet!” Great start! But thankfully I did not scare her off. I began to tell her about us and she patiently listened and then gave me her contact information. She gently told me she had to go be with her kids, and I then realized that I was keeping her hostage. She walked off and I felt like I had won the lottery!

We were able to get scheduled with her and begin therapy the next week. I learned that she had a little girl the same age as Emmett with CAS. I watched her work with him that first time. I soaked in her gentle reassurances to me. I got in the car at the end of the session and cried and cried. She is just perfect for Emmett and just perfect for me. What CASANA gave to Laura through support and the bootcamp was trickling down to me. Laura, just like CASANA, gives me the tools and information and support I need to help Emmett. But more than that, we have been given hope!

I started this out by saying that our family’s story is much like that of other families who have a child with CAS. But I know that our ending is not the same as many. At the conference in Denver, there was a final question and answer session. I chose to go the one offered for parents new to a CAS diagnosis with younger children. In the middle of the session, a mother approached the microphone with her question. She said that she was overwhelmed with information, but had a specific question for the panel. Her son was 15 and had just finally been diagnosed with apraxia. He had floundered in the school system and never had appropriate treatment. She asked, “Is there hope for him now?”

The panel was gracious and so helpful, but I think everyone there felt a knot in their stomachs and knew how serious and devastating that situation was. When treatment is started early, yes, there is hope. For a child that age, it is difficult. The SLPs on the panel spent a good amount of time talking with her and did their best to help her.

And again at a more recent visit by Sharon Gretz to Denver for another workshop, there was a mother who asked about how to help her nine year old son who had not received appropriate treatment. She said he was resisting all her efforts. She also asked, “Is it too late? Is there hope for him?”

I think of those women often. That could have been me in a few years, confused and despairing. But we are not in that place. CASANA has provided a lifeline for our family. They offer workshops and the conference and webinars and more. They fund research and educate the world about this disorder. They provided the training that Laura uses to help Emmett. They helped us to see that we are not alone. But the most important thing they give to all of us is hope. And truly it is only with that hope that we can continue this fight and do this work with and for our kids.

June 25, 2015
A confession, and a hope for A

A is about to graduate from preschool tomorrow and embark on her Kindergarten experience. She is ready and excited. Her preschool teacher this year is retiring, and what a teacher she was! Ashlynn mimicked and learned SO much from her. I can’t even begin to start with all the things Ashlynn has learned. This woman set everything to a tune paired with some large gross motor movements, and the combination was pure gold for A. I hear what she has learned every night before bed, during her pretend play of being the “teacher,” and with her songs she will randomly bust out when in a good mood.

Great right?

Well, yes of course….and well no, not really. No? Why you ask? Well, I don’t believe this teacher ever really believed in A. It’s a sad and maybe terrible thing to say. I know the teacher liked her. In fact, she called her dolly. It’s just that, there was maybe only one time in all the meetings and conferences that the teacher knew what A could really do, and when I would tell her of all the amazing things Ashlynn learned, she would just smile a half smile. I thought she would be so proud. I always waited for her to tell me that, but it never came. Sigh. Oh well.

In fact, though A is well liked, there was never any teacher who exclaimed how proud they were of her. Who noticed how hard she works. Tirelessly really. Truly. She is always begging for me to do homework. She is always going over what she learned, or practicing flash cards, or hand writing. It’s really sad to me that no one sees that but me. In fact, it felt like they were against her when they were trying to force cognitive testing on me…as though giving her a number would make me see what they see, or rather, didn’t see.

I’m part of a lot of groups now for apraxia. Basically, my facebook newsfeed is apraxia news 24/7. I have friends I never would have had if not for apraxia. Some are experiencing highs, some lows, all riding the roller coaster. I have a few who are having incredible highs and I am SO happy for them. THRILLED! TRULY. At the same time, I can’t help but feel jealous, sad, but also hopeful that A will meet that right professional who will change her life, and to be honest….I really don’t want that professional to continue to be me. I really think next year we will have them. The team she is going to is MY special education team that I actually work with at my job, and ALL the professionals care about their kids, know their kids, fight for their kids. I’m pretty sure A is going to have a dream team next year, but of course, one can never be sure.

Throughout all this I keep being reminded of something I said earlier in my career. It’s been haunting me now, and I really hesitate to confess it. However, that’s never stopped me before, so here goes. I had been at the job for awhile when I was paired with an awesome SPED teacher. She was young, enthusiastic and passionate (much like me). We were both problem solvers and would talk rounds and rounds about kids and how they learn. We were going to change the world. I believed in the kids as much as her. I just knew with our help they were all going to thrive. I remember though, she would call all of her kids “smart.” At the time, I had enough experience with cognitive testing results to make me knowledgeable, but not enough experience with cognitive tests it made me dangerous. At least, that’s how I see it now. At the time though, I really felt I had this learning disability thing down. In fact, I was praised by numerous psychologists for knowing it so well, and for being a great diagnostician myself. Maybe it inflated my ego. I didn’t think so at the time, but I just could cringe now.

Okay I’m stalling. I’ll just say it.

After one IEP meeting for a kid who had come out below 80 on cognitive testing, I had a conversation with this SPED teacher that went something like this:

Me: Jamie, we both believe in this kid, and we both know he’s going to make growth and that he’s got so much potential, but do you really think you should be saying he’s smart?

Jamie: But he is smart! He can do………..

Me: I know! I know! I mean, don’t you think though that we should be honest and not give false hopes?

Jamie: You don’t think he’s smart?

Me: I think he’s……capable. I think we should say he’s capable, because he is, but telling parents he’s smart doesn’t seem ethical. His IQ is in the 70’s.

I cringe again to say I think I won that argument.

How dare I?? How DARE I tell a teacher who believes in her student that he isn’t smart. Who was I? Who was the psychologist? What is in ONE number given on ONE day, when a CHILD IS STILL DEVELOPING?

Oh I’m so mad at that Laura, and prouder than ever to have worked with that Jamie. So Jamie, you probably don’t read this, but if you’re out there, you are a DAMN good SPED teacher, and if your think your student is SMART in spite of a stupid cognitive test, then I hope you never listened to me and say it.

I desperately need a teacher like you right now. I desperately need to hear that someone else other than me and her grandparents think she is smart. I desperately want just ONE professional at some point at least see what I see. I don’t know why I need to hear it. I know in my heart she is not only capable but smart too, but to hear it, just the thought that maybe someday I will hear it……. is bringing tears to my eyes.

I always quote her, but it’s always appropriate.

My dad always said you have to be humbled to make growth. *gulp* For A, I take a bite of my humble pie.

May 20, 2015
Interview with “Speaking of Apraxia”

<br />

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! <br />

Author Biography

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/pages/Speaking-of-Apraxia-A-Parents-Guide-to-Childhood-Apraxia-of-Speech/235772599837084?ref=hl

Leslie A. Lindsay, R.N., B.S.N.
Award-Winning Author of Speaking of Apraxia www.speakingofapraxia.com, www.woodbinehouse.com
Author interviews, give-a-ways, excerpts, & so much more at www.leslielindsay.com
Like my Author Facebook Page https://www.facebook.com/LeslieALindsay1?ref=hl
Follow Me on Twitter www.twitter.com/LeslieLindsay1

* Note, this post contains affiliate links*

May 3, 2015