SLP Mommy of Apraxia

Category: apraxia blog

Does she really want to swim? I never really know.

Global Apraxia is a hell of a disorder. I’ve written before that though at times it has been a blessing, I don’t believe I will ever quite forgive it. Despite a child having the will, they have to work, and work, and work to find the way. Though they have things they want to say, they can’t always say it. Though they have things they want to do, they can’t quite do it; let me revise that. They can do it, but with more practice and repetition that cannot possibly be adequately described with the written word.

Then there’s the bystanders. People who aren’t close to the situation. They think, “well just work with her a little and she will get it.” Even her preschool teacher thought writing her name would just “click.”

It NEVER clicks. Nothing A has done has EVER clicked.

EVER.

It is with pure determination, will, tenacity, and resilience that she succeeds…….and succeeds with a smile on her face.

A is almost six, and she has never told me what she wants to be when she grows up. She has never begged me for a toy, or to be in an activity. While I see other girls her age eagerly expressing how they want to be a singer, or a ballerina, or a gymnast….I have had no idea what A wants to be, or what she is interested in.

I can guess. She likes to cook. She likes to bake. She is a happy girl and generally speaking likes any activity I put her in. She loves to play teacher, speech therapist. occupational therapist….you get the picture. But she has never actually told me who or what she wants to be.

I kept her in swimming because not only does it help with bilateral coordination, it helps with focus and core stability. That is, until the day I wrote this post one year ago.

I saw the light go out in her eyes.

I wrote on my fb page I still can’t read it, and I can’t. I know what it says though, and it’s the scariest post I have ever written. Suffice it to say she almost drowned in swim lessons, and her instructor was able to somehow coax her back in the water. Had he not done that, I am certain she would never have attempted to swim again. However, he did, and the story played out much differently. He was a head guard, and he also offered private swim lessons, so we put A in private swim throughout the entirety of last year.

A LOVES this man. She TRUSTS this man. On Valentine’s Day she used every last candy pack and glued it to his card. I can’t believe how incredibly patient, kind, thoughtful, and understanding he is with her. I can always see by her smile how much she enjoys it, but part of me has always wondered if I should be putting her in dance…gymnastics again…..karate…..hippotherapy…whatever. I wish she could say, but she doesn’t, so I take stabs in the dark.

Progress has been slow. Josh (her swim instructor) told me a couple weeks ago that she is at the point where she can float alone, but everytime he tries she freaks out and they regress to the beginning. He was telling me he needed to find a way to let her go without starting from ground zero again.

I prepped her the whole week. “A, Josh thinks you are amazing! You are doing so good! He wants to let you go, but you can’t be scared. If you fall, he will be there. He will never let anything hurt you. You have to try and do it on your own.”

“Why?” she asked.

“Because honey. We swim alone. Do you see anyone helping me or daddy when we swim?”

“No,” she admitted.

“A, it will be okay, I promise. Josh will never let anything happen to you, but you have to try to do it on your own okay?”

Silence

“Okay A?”

“Okay, mama. I’ll try.”

After prepping her the whole week, she had an opportunity to go up with her grandparents early to a weekend getaway in the mountains. As her private swim lessons are Friday evening, I considered cancelling. I asked her what she wanted to do, and she said she wanted to go swimming. Okay, so I let my son go early and took her to swim lessons.

The lesson started off typical, but it ended anything but.

Josh warned her he was going to let her go. She didn’t start freaking out like she usually does. She told him ok.

He had her on her back and I was holding my breath. I know he’s right there, but I have PTSD from her incident last year. I’m scared too, even though I know it’s an irrational fear.

Josh lets go…

…..and he counts to three before he lifts her up!!!

He cheers!! “A!!! You just floated by yourself for THREE seconds!!”

She smiled from ear to ear. He tried to do it again, but she shook her head.

“Okay,” he said, “not today. That’s okay. We’ll try again next week, but I am sooo proud of you!”

When we left the pool I was praising her. She typically will just smile which is good enough for me. This time though she proudly exclaimed,

“Mama! I float by myself!”

“Yes!” I said. “Yes! You should feel sooo proud A.”

“Thank you mommy, ” said A.

“For what?” I inquired.

“For swimming” she said sincerely.

I had finally had my answer. She may beg or tell me who or what she wants to be or do, but her simple thank you was profound enough.

I teared up before I could barely utter, “Oh A, you don’t have to thank me, but you’re welcome.”

As I said before, global apraxia is a hell of a disorder, but when you beat it, there is nothing in the world better.

July 20, 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
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
Why apraxia? Master plan? Coincidence? Destiny?

When I first started in the field, I actually had not set out to be an SLP. It seems crazy to me now since I can’t imagine doing anything else, and it seems especially crazy since I not only think about speech everyday, but I think about apraxia even more. If I’m not thinking about apraxia or something apraxia related, it doesn’t last long.

No, I was working at a Dodge Dealership straight out of highschool, and stayed there to support me and my bachelor degree through college. It was perfect because many times as a receptionist I had time to do my homework in between phone calls. I initially thought I wanted to be a broadcast journalist. I was good at writing and speaking, or so my teachers said. However, the advisor said the market was saturated and that to be doing this career in Denver, I would have to get my start first in a small town.

Dealbreaker. Taking me out of Denver away from my family has always been a dealbreaker.

Well, what else can I do in speech communications? They had me fill out a questionairre, and I indicated I also liked physical therapy. I had blown out my knee my senior year of highschool basketball and it was honestly devastating to me at the time. I was a starter and the team captain, and I thought I could go to college and play ball. Well, God had other plans. I remember working a lot with my trainer and I thought that would be a cool job. The advisor suggested marrying the two and sent me to talk to the head of communication disorders to look into speech therapy. I had never really heard of speech therapy. I just wrote that and it seems unbelievable, but it’s true. Nope. At that time in my short life, I had never heard of speech therapy.

Catherine Curran was the head of the communication disorders at the time and suggested I take a language acquisition class to see if I liked it. I loved the class, the only problem was to be a speech therapist I’d have to have a masters, and no one in my family to this point had a college degree. I was going to college, but didn’t have any grand expectations, and I sure didn’t think I would ever have an advanced degree. That was just a crazy dream. I’m still very Type A though, and maintained a good GPA.

I pursued working at Dodge and found myself working my way up in customer relations. I got to know big wigs at Chrysler Corp and was certain I could work my way up from there. My umbrella degree was speech communications which seemed applicable. I wouldn’t have to mention the emphasis was in disorders.

Then, in 2003, right when I was graduating, the Great Recession hit. The car business TANKED. My boss who I was set to replace was making 40k and all the GM offered me was 13.50 an hour to do her job. I was livid. I had 5 years into the company. Was this is a joke?

Around that same time, Lisa Gessini, the head of the speech department in Denver Public Schools called me. DPS has approved SLPA’s and she saw I was on the list of students who had completed the pilot program. This program was a grant sponsored by three area colleges where I literally was paid to train to be an SLPA. Yeah, I did it, but again, not because I thought I would be doing speech therapy. They gave me 3k to go through the program. Sure I thought! I can get paid to do a little more college and practicums.

Lisa said the pay would be about what I was making currently at Dodge, but I would have summers and holiday breaks off. In the car business, this is when you MUST be working, because those are the times people want to buy cars.

Okay, what the hell. I’ll interview.

I got the job.

Hmm, alright. I’ll take it. Sucks that I have no opportunity to move up, since moving up would require a master’s degree, but I was disenchanted with Dodge and thought I would keep my contacts with Chrysler and go back once the economy recovered.

Guess you all know by now I didn’t go back.

No, instead I met another key player who is still in my life. Insert Deborah Hensley Comfort. That is literally what her name tag said. I was immediately intimidated. She used her maiden name as her middle name? Who does that? Her dad was a doctor. She had gone to Vanderbilt. She could quote researchers like I could quote pop singers. That’s not all that made her amazing. As I worked those two years as an SLPA, every SLP I worked under made progress with their students, but no one made it as quickly as Deborah. Her secret wasn’t really any surprise. Always planning out her lessons, never flying by the seat of her pants, constantly researching….her students’ progress wasn’t really a coincidence.

I worked under other SLP’s during that time. No one planned like Deborah. Many went into a session just winging it. Some did the same methods they had been doing for the past 30 years. Deborah’s sessions were always dynamic. To be honest, even though she could come across like a total ‘b’ word to colleagues (and she knows this because I have told her out of love), when she was in therapy someone turned on a switch. Her kids wanted to please her. They worked for her. She just had that “it” factor. I can’t explain it.

Anyway, there was absolutely NO way I could ever be like her.

I had another mentor at that time who I loved dearly. She was another master’s degree leveled woman with the name Roberta Hill Fehling. Yep, another woman who used her maiden name as her middle name. It may sound dumb, but this was just not the culture I came from. Anyway, Roberta could handle caseloads of 90 and have spotless and meticulous paperwork. She taught me a lot about CYA. Unfortunately, you don’t have as much time to see kids when your paperwork can stand “Judge Judy’s Test” as she would put it; so though her kids made progress, they didn’t make it as quickly as Deb’s. That doesn’t mean I fault Roberta. Not at all. In my field one lawsuit can bring down your entire career. Everyday when we write an IEP, we literally write a legal document and we are not lawyers. I’m sounding dramatic, but we can get fired on technicalities Seriously.

Anyway, these two women kept asking me when I would go to graduate school. I would laugh and give them a half smile. I had no plans to be an SLP.

One day, I walked into work and Deb had an impressive display of paperwork laid out on the table. As I looked at it, I realized it was paperwork to get me into graduate school. I saw the application, dates of the GRE, and a letter of recommendation.

“Deb….I….”

“Don’t say anything but that you’ll apply,” she pressed.

“Deb….you know I can’t afford to not work and go to school,” I stammered.

“I know that. I called my contact at UNC. They have a distance learning program. You can still work as an SLPA under me and go to school,” she said proudly.

My head was spinning. I didn’t want to let her down, but this was crazy. I started to stammer again and

“Laura, fine. You can say no. You can choose not to do this, but at least I will know in my heart I did everything I could to get you to go.”

What does one do with that? 90% of me wanted to say no, but 10% told me maybe I could actually get a master’s degree someday.

“Okay,” I said. “But I’m only applying to this one program. If I don’t get it, it wasn’t meant to be.”

“Fine,” she said beaming.

You may not be aware, especially if you haven’t had a great experience with an SLP, but graduate programs in speech language pathology are incredibly competitive and limited. It is not an exaggeration to say students will apply to 5-10 schools and maybe get accepted into one, if that. There are only two colleges in Colorado that have a program. At the time, the average GPA for students accepted was 3.9 at one and 3.87 at the other. I had the GPA….but….

Needless to say, I got in.

During that time, Deb had a kiddo with apraxia pop up on her caseload. She wanted me to attend a training with her. It was expensive…of course. I argued, she got the principal to pay, and next thing I knew I was sitting in a training given by an apraxia expert out of the Mayo Clinic.

Insert Ruth Stoeckel.

If I thought Deb was intense, Ruth was intense meets steroids. She was crazy smart. I spent the entire time scribbling notes and looking over at Deb who seemed to be understanding what Ruth was saying. That’s good. If I said I understood 50% of her talk at that time, it would probably be stretching it.

My first year as an SLP a little boy who was entering Kindergarten appeared on my caseload. Shy and frustrated, he was smart but nonverbal. About two months in, I had an alphabet BINGO game sitting on the table. Daniel took it out and proceeded to name all the letters.

“Daniel!!” I cried. “Listen to you!!” I exclaimed excitedly.

He beamed.

When we tried to combine the sound though with just one more sound….no go.

Hmm.

I googled apraxia that afternoon and found…

Insert CASANA.

I printed out articles from David Hammer and Edythe Strand. Certain it was apraxia I changed my treatment approach and pulled out that Mayo Clinic talk.

The day his dad came in and he said “Hi Papa” his father cried tears of joy. He picked up Daniel and hugged him with tears streaming down his face.

That was my first personal experience with apraxia. That summer I was terrified Daniel would regress. His family had no money for therapy, no medicaid, and his dad supported them by working at Chipotle. I offered to see Daniel for free. I really thought nothing of it. I loved Daniel, truly. I just wanted to continue the momentum, and at that time I didn’t have a family so I had free time. I’m happy to say I left Daniel speaking with a residual articulation disorder. He went to another district afterward. I think about him a lot.

One day I got a call from the SLP who filled in for my maternity leave during that time. She was working intake acute care at Denver General and Daniel had come through the door. She was sick. Daniel had been in a sledding accident and his speech was back to baseline.

Apraxia didn’t really come around again for me until Ashlynn’s dx. Around that time, I had another Kindergarten student walk through my door nonverbal with a working dx of suspected apraxia. I did exactly what I did with Daniel, and then started doing the Kaufman method, which Ashlynn was getting. His name was Bryan, and yes I love him too. During that time I discovered the CASANA conference was coming to Denver. This was the year after Ashlynn’s dx. I was on maternity leave and broke. It was expensive, but not one to disregard a coincidence I just KNEW it came for me. I went. I met the head of CASANA.

Insert Sharon Gretz.

She will laugh when (if) she reads this, but I told my husband I was going to meet my Julia Roberts. When I met her, I will never forget as I was telling her about Ashlynn tears welled in her eyes. I’ll never forget that. She didn’t say a word and yet she understood me so completely. I went on to tell her about Daniel and how I treated him using articles from google and a man named David Hammer. “Dave,” she said.

Insert David Hammer

I looked on incredulously. I must have been in a dream.

I was seated at a table with other SLP’s who were “bootcampers.”

“What’s bootcamp?” I asked innocently.

Sharon told me it was highly competitive and there was already someone who had done it from my area.

“Oh,” I said, face falling.

“But you should still apply,” she offered. I half-heartedly smiled. I’m young. I don’t have the experience others have, and I never went to colleges like Vanderbilt. Oh well, it was a cool thought.

I applied anyway that Fall. I needed a letter of recommendation from a family. At the time, I was only treating Bryan, and his family only spoke Spanish. The teacher said I could ask them to write one and she would translate it. I have never been so touched by a letter in my life. It was hand-written and so heart-felt. I had no idea that the things I had done with Bryan they had noticed. When the dad dropped it off, his brow was furrowed. He apologized for not having an education to write me a good letter, and he hoped it would be good enough. He really wanted it for me. I assured him it was good enough! Education has nothing to do with it! It was better than any perfectly punctuated letter in English. He looked skeptical. I smiled an enormous smile.

I sent it to CASANA. I was accepted!

Ruth, Dave, & Sharon awaited in Pittsburgh.

Walking on the campus of Duquesne University I had to pinch myself. How had a girl who thought she would be in the car business end up in Pittsburgh with an elite group of SLP’s and apraxia experts that I had read about in journals ready to mentor me?

To wrap up this story (if you’re even still reading) Deborah Hensley Comfort is now my daughter’s SLP (there is no one better). As I was relaying my Ronda Rousey story (another coincidence?), she smiled and said so sure,

“Oh Laura. I will retire soon. But I can’t wait to watch you as a PhD level professional.”

I laughed, but this time it was a different laugh. This time, my eyes had a glimmer. Laura Baskall Smith PhD CCC-SLP has a nice ring to it! Ha!

Now one could say they were all a series of coincidences, or others could say it was all part of a master plan. I don’t believe in either though. I believe God gives you messages and puts people in your life depending on circumstances or choices you have made, and you can choose to listen, or you can shrug your shoulders and brush them off.

I’m so glad I chose to listen.

June 24, 2015
I failed her

Little Jace is 2:11, the exact age my daughter was when I took her into Child Find. This is also the time I started blogging. I was talking with a client’s mom today, and he is the baby…the baby of like 6 or 7 kids (I tend to lose track), and she was saying every once in awhile they realize just how much they are missing out on. These include the funny sayings, or the inside jokes each family develops.

My situation is slightly different. Ashlynn was my first born. Her milestones (or inchstones) are etched not only in my memory, but in written words as well. Each time my son does or says something, I can’t help but have flashbacks to her development.

Just the realization that Jace is 2:11 was mind blowing. That’s the age I took Ashlynn to Child Find. I will NEVER forget that age. I will NEVER forget the dread walking her up the sidewalk, the overwhelming desire to turn back toward my car, or the three words that made my head spin because I instantly knew they were true,

“This is apraxia.”

I read an old post around that time: Background and suspicions of apraxia in my own daughter. My last line was:

“I had to accept that I had failed her.”

Wow. Ouch. However, yes, this was EXACTLY the place I was in. So much fear, so much weight, so much worry, so much pain, so much GUILT.

The post is surreal. I talked about how my mentor took me to a conference years earlier given by Ruth Stoeckel. I could not have even IMAGINED that years later I will be able to say Ruth Stoeckel is also my mentor. Seriously, that would have been so UNBELIEVABLE to me at that time.

Yet, it happened.

I remember feeling so embarrassed that I was an SLP who couldn’t help my child. I had a parent support group I found, but no one was an SLP. I felt so lonely. I would not have believed you if at that time someone would have said I would be part of a newly found support group with 22 other women who shared my exact experience.

Yet, it happened.

I would have laughed if you told me I would have gone on a crazy gut intuition to meet MMA superstar Ronda Rousey just because I had a suspicion from an interview that she had apraxia, but I did; and now my daughter will always know a famous woman who had apraxia and beat it, and will have an autographed copy of her book. (Edited to add we now have our own book of OUR story with Ronda and Ashlynn on the cover).

Yet, it happened.

Just recently in my SLP Moms of Apraxia group a fretting mother reminds me of my early self. She made the comment “I’m afraid I’ll miss something and ruin his life.”

I told her she couldn’t put that out there. She had to stay positive because she is already amazing and doing everything she could for him……but today I realized, at her stage I felt the same way. I felt the same way, but time marched on, Ashlynn got better, so much better in fact, a fellow mom of apraxia met her yesterday to take my family pictures and told me she would never know Ashlynn had apraxia.

Dang. Imagine that. I guess I didn’t fail her after all, but no one could have convinced me of that during that fateful day I received her diagnosis. I KNEW in my SOUL I had failed her.

So glad and grateful I was wrong.

Another mom further in this process in my SLP MOM group said, “If you put your concern out into the universe, the answer always comes in the strangest ways.”

I couldn’t agree more. For me, I don’t believe in coincidences. Coincidence to me, is code for “God is telling you something right now. Listen.”

My journey, Ashlynn’s journey, is far from over. I’ve stopped worrying about what will come. Instead, we believe in what will come.

Laura Smith, M.A. CCC-SLP is a 2014 graduate of Apraxia Kids Boot Camp, has completed the PROMPT Level 1 training, and the Kaufman Speech to Language Protocol (K-SLP). She is the author of Overcoming Apraxia and has lectured throughout the United States on CAS and related issues. Currently, Laura is a practicing SLP specializing in apraxia at her clinic A Mile High Speech Therapy in Aurora, Colorado.

June 15, 2015
Her fight, our fight: The day we met Ronda Rousey

It started with an intriguing title: Ronda Rousey: The World’s Most Dangerous Woman, and then a picture of a James Bond beauty type.

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Now, I normally wouldn’t click on stuff like this, but today I had a day off, the kids weren’t fighting, and I thought, okay…sure. Let’s see. A beautiful James Bond girl is the most dangerous woman in the world? Sure. Let’s read about this.

And then I read this

“In her first six years, nobody knew whether she’d ever speak an intelligent sentence, such were the after effects of being born with an umbilical cord wrapped around her neck. It could be that her gibberish and mumblings were signs of brain damage. No one knew, and her parents — Ron, an aerospace-industry executive, and De Mars, an educational psychologist and statistician — moved when she was three from Riverside, California, to Jamestown, North Dakota, in part to be near the Minot State University speech therapists, who set about bringing her vocal cords to their senses. It wasn’t easy, and it took time. And it was especially frustrating for Ronda given how advanced her sisters were. “I’m dumb, Mom,” she once said. “Maria and Jennifer have the words. I don’t have the words.” “No, you’re not, you’re very smart,” her mother told her. ”

And then I was hooked. I started googling her name. I read every interview. In almost every interview she made mention of her “speech impediment.” Each time she talked about it, the more my mind thought, “this is apraxia.”

I threw up the question to the apraxia kids facebook group. Yes, people had heard of her, but no, they never heard she had a speech impediment and they sure didn’t think she had apraxia. Hmm.

Did I mention I had the day off and my kids were being good?

So, I started to research some more. In one interview she said her dad called her “sleeper.” She was just waiting to bloom. He told her things like she was going to be an Olympic gold champion, or the president of the United States. He died tragically when she was young and he never lived to see her accomplishments. My heart ached for them.

In another interview they said one time she said a word that was unintelligible, but it was what she wanted for her birthday. Her dad took her to the toy store and made the store clerk take them to every item until they discovered her jumbled words were trying to say Incredible Hulk. Man, how many of us have been there? Damn birthdays. When your kid can finally tell you what they want, you would sell your house to get it and you say a prayer of thanks they could at least try and say something and tell us what they want. She HAS to have apraxia. I have to at least ask.

One problem. Ronda Rousey is incredibly famous. What could I even write that her PR people would read and then pass on to her? Could I try her fb page? Twitter? I settled on the “contact me” form on her website. I started writing to her PR people, but it emphatically turned into me writing to her. I didn’t hold out much hope, but hey, might as well put it out there. Apraxia needs a face….and what better face then this badass female! She’s smart, talented, driven, resilient…man. Doesn’t she sound like our kids with APRAXIA?

Before I closed my computer one last thing on her website caught my eye. She wrote a book. Hmm. Maybe she writes more about her speech impediment in her book?

I saw that she was going to have a Colorado book signing.
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Interesting. I clicked on it.

May 29th 2015

Wait….that’s…..today!? Oh my gosh. She is in Colorado!! She is in Denver tonight!

Insert internal struggle.

I have to go! This is amazing. I have to ask her. I can ask her in person! Laura, are you crazy? A has speech therapy and swimming tonight. You can’t go down there. Plus, are there even any tickets left? It’s the day of. Well, I could check. I could check….and then if there aren’t any tickets left I can wipe my hands of it and know it wasn’t meant to be.

So I called Tattered Cover. There are tickets left, but they are almost gone. I have to buy the book to get a ticket. Do I have to come in and buy the book? Oh, I can order it over the phone and pick it up at the book signing with my ticket? Do I want one? Um…um….this is crazy right? I’m crazy. Oh what the hell. Yes. I’ll buy one. Yes thank you. I’m number 422 out of an allotted 500.

What did I just do? I don’t watch MMA. Just this morning I didn’t even know who Ronda Rousey was and now I have bought her book and a ticket to go to her book signing on a night we are slammed with appointments. My husband is going to think I lost my mind.

Okay, I won’t tell anyone. It’s only crazy if she doesn’t have apraxia right?

I feed my kids lunch.

Who am I kidding? I can’t keep a secret. I text two of my apraxia mommy friends.

“Do you believe that coincidences are not really coincidences?” and I tell them the story. The consensus?

“Go”

I tell my daughter’s SLP…her response?

“You have to go!” and “You should bring your walk flyer!”

Yep. Definitely going. I packed a CASANA apraxia brochure and inserted my walk poster and off we went.

A was STOKED. She LOVES books. She could not believe this big book was for her. She held it like a prize and she would NOT let me hold it.

We stood in line and people thought she was adorable. Ronda’s youngest fan. Well…maybe….if Ronda has apraxia this moment is epic. I started to get nervous. What am I doing here? I dragged my 5 year old baby to a book signing on a mother’s intuition. Oh well. If nothing else, this woman is pretty kick ass. She’s not famous for her good looks (even though she’s beautiful), she’s not famous for being a reality star, she’s famous for being freaking talented and smart. I started liking her in spite of anything.

Finally it was our turn. As we got closer, her bodyguards were crabby and everyone on her team seemed tired. They were literally pushing people after their book was signed so they wouldn’t take up more time for selfies or whatever. She wasn’t personalizing books. In fact, you couldn’t even hand her your book. They handed it to her for you. Sigh. I took out my hidden apraxia brochure.

Damn.

Oh well, maybe we’ll still be able to talk. Those body guards though. Gulp

“Okay sweetie, your turn.”

I sent A up to the counter by herself because I read in one interview that Ronda has a soft spot for kids who seem to have the same speech disorder she did, so she really tries to take time for them. This was no exception.

A walks shyly up to the counter.

“What’s your name?” Ronda asked.

A answered but she couldn’t understand so she leaned over and asked again. I only got this one picture

before I went over to clarify.

Ronda started signing her book. I said quickly, “A has a neurological speech disorder like you did and we are inspired by you because you overcame that and so much more.”

Almost on auto-pilot Ronda responded, “Yep, I had to overcome a lot to get here.”

I’m crazy nervous now. I have to ask her like ASAP. Luckily she’s taking a long time to sign the book. Laura say it!!

“Did you have apraxia?”

Ronda stops signing dead in her tracks and looks me in the eye and says, “What did you just say?”

“uh uh apraxia? dyspraxia? Was that your speech impediment?”

She looks incredulous and repeats “apraxia, yes, this is what they think I had.”

I smiled. I knew it. Un-freaking believable. I look over at the body guards. What the heck. I throw the CASANA brochure on the counter. They move in, but she motions them to stop. I say,

“This is information on apraxia. If you really did have it, will you say that in your interviews instead of speech impediment. It would mean so much to our kids who are struggling with it.”

She again looked at the brochure before looking back up at me and said, “I will. I really will.”

She seemed sincere. I instantly believed she would. I have A give her a hug and try to push her along (bodyguards are watching) and she says,

“You know, my mom is a PhD psychologist, and SHE had never heard of it. She took me to the Universities and many of them had never heard of it.”

“Yes!” I replied. “Yes! It’s still not well known or understood.”

She starts to get really worked up now. Emotions start spilling out of her. I read in an interview people think she’s so tough, but really she wears her heart on her sleeve and she was, right then, in that moment.

“They wanted to put me in a special classroom away from my friends. They thought I was stupid!! But by 4th grade I was top of my class in algebra, and by highschool I tested gifted.”

“Yes!” I again replied. “Yes, these are our kids.”

She looked back down at the brochure before looking up again and said, “I will. I really will.”

A and I ran out of there. Before we left I pointed at Ronda and said “Look!! She has apraxia,” and then I pointed to a line of almost 100 people who were still waiting and said, “and all these people want her autograph!!”

My daughter smiled. We ran out into the rain laughing.

“You’re going to be famous!” I said, and we laughed.

It was very late by this point and we still had a 30 minute drive home. I stopped by my parents house to tell them the story. They couldn’t believe it!

I finally got home and ate dinner while my husband put A to bed. I fired up my computer to start writing this blog post, but checked fb. Just for the heck of it I went to Ronda’s fb page to like it, and that’s when I saw this:

She reposted the brochure I gave her!! She must have done that first thing upon completing the book signing!! She IS one of our kids! So freaking awesome!!

Even if she doesn’t do anything else, even if she doesn’t say she has apraxia (but I think she will), A and I will always have that moment…..that moment when we met a true fighter who beat apraxia and so much more, just like A will.

We will always have that book confirming what I have hoped all along:

“I never would have been able to do any of those things without hope. The kind of hope I’m talking about is the belief that something good will come. That everything you’re going through and everything you’ve gone through will be worth the struggles and frustrations. The kind of hope I’m talking about is a deep belief that the world can be changed, that the impossible is possible.” – Ronda Rousey

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June 1, 2015