SLP Mommy of Apraxia

Category: Apraxia

I’m not sad she’s going to Kindergarten?

Ashlynn had her Kindergarten baseline test of sorts two days ago. They get data on her letter names, letter sounds, phonemic awareness skills, and number sense. I sat in the back while she sat a table with the her new teacher, looking like an official Kindergarten student.

It was quiet and she was 1:1 without distractions. She named almost all of the uppercase letters correctly. I could see her really thinking and really trying. Lowercase was harder, but we haven’t been focusing on lower case anywhere. Even so, she managed to name quite a few lowercase letters that resembled the upper case ones including /c/, /s/, and so forth.

In speech therapy, her SLP has goals around word retrieval and rhyming, among others. During the word retrieval tasks, she is also inherently having to focus with min cues. I saw ALL of that work paying off during this test.

In the past, and even now still, Ashlynn would smile, giggle, and then attempt to change the subject when she was asked to do something that she couldn’t do. This time though, she looked at the teacher honestly and would say “I don’t know” or “I don’t know that one.” She just seemed so much more mature.

People have been asking me if I was sad she was going to Kindergarten. I remember thinking last year, “Sad? Um no. Scared? Yes. Worried? Yes, but sad? No.”

Well, as I observed this glimpse of her Kindergarten year, I had flashbacks to the little girl who couldn’t talk. The little girl who laughed and giggled when things were hard, and the little girl that many discounted in preschool. The little girl who didn’t seem aware of how different she was and who just marched forward.

That little girl wasn’t so little now sitting in that chair across from her new teacher. That little girl seemed so much more aware now, so much more determined now, had a look of resolve on her face, a look of pride with each success, and then anxiety when she had to say “I don’t know” too many times in a row.

Her voice from this summer was echoing in my head, “We work on my homework mama?” everyday she got out of bed.

Everyday.

And that’s when it hit me. I finally felt sad. I realized my little baby girl who struggled to talk, to walk, and to do literally any motor task or learning task that she has mastered, is now embarking on the first day of her true academic career.

I felt sad her young life was full of therapy appointments and hard work, but I felt so damn proud of her too. In her first five years of life, she has learned, and I have learned through her, that if you never give up, you can never be beaten. She will always succeed because that is who she is. Inside her sweet laugh and kind light, is a heart of a brave fighter, a warrior, an overcomer, and achiever….a true hero. Someone who doesn’t shy away from hard word, but who wakes up each morning with a smile ready to embrace it.

So I’ll take my cue from her. I’ll try not to be sad as I watch her walk away, but if I cry, it will be tears of pride.

August 14, 2015
That moment, when you go viral

When you have a blog, you can actually see how many hits you get per day. You can also see if people stayed to check out other articles, or if they moved on. You can see your most popular search terms, and can see your most popular posts. My blog averages about 110 unique visitors per day. To me, that is a success. I know that parents and SLP’s browse my site, and in a small way, I know I am spreading awareness.

Something happened though in the last week after Ronda’s fight. My daughter was featured on a Metro PCS commercial that was challenging social media users to post their pictures and #getrondarousey, and Ashlynn’s picture was one out of 7 selected to air on the commercial. It was a picture of her holding a sign that said “Her fight, My Fight. Go Ronda!” and underneath I had written, “I am cheering for Ronda because she beat speech apraxia like I will.” Well, they read that out loud. You can watch it here: https://www.youtube.com/watch?v=iNKCzIiQNRA

I can’t be certain, but I think that’s why my blog started getting hit after hit with the search term: Ronda Rousey Apraxia.

Since Ronda has never publicly said she had apraxia, my blog is the only place you would have found that information when I posted my meeting her on May 29th which led to her sharing the brochure.

In the two days following her fight, I started seeing my hits rise. When it reached 20,000 hits, I told my husband, “Cody, I think my blog post went viral.”

He downgraded it. Maybe he was right.

The next night I checked, and it was at 30.000.

The next day Cody posted early in the AM an article published by USA Today which you can read here: Ronda Rousey discusses the rare disorder

That afternoon I had started my first day back at work in the schools. I went to check my phone, and I had two twitter messages, an email, and a voicemail from ABC News and GMA. They were huge Ronda Rousey fans and they wanted to feature my story. I was seriously freaking out. I only called back after two hours amid a lot of co-worker therapy/advice. They wanted to come tonight!! I said okay, but then was immediately paralyzed with fear. My colleagues told me to go home!! What was I doing at work?? I honestly was too scared to move. Moving meant I would get interviewed, and that was really scary.

I finally went home, only to get a call at 4:00 saying they were trying to get everything figured out, but they would call tomorrow. Luckily I didn’t have to work on Friday. I spent the whole day with a knot in my stomach. I texted my apraxia mommy friends, emailed the head of CASANA, and basically freaked out. Finally I got a another call that said they were hoping to interview me this weekend.

Seriously??

I have two little kids. I came home yesterday afternoon trying to keep my house in tip top shape only to have them cancel………again???? Deep breath.

I had to tell them I was going camping that weekend. They rescheduled for Monday at 4:00. Later than I would have liked it, but okay.

It was hard to relax. As I logged onto FB, I discovered Friday night my post was shared by the Huffington Post!! I was glued to the comments, which were all mostly positive. It honestly made my soul smile.

During camping, a friend in Syracuse had been interviewed by her local news station, and a client discovered my article was shared by the UK Daily Mail!! I discovered an MMA site also published their own article, and a friend tagged me in an article on booktribe.

For the record, after 40,000 hits to my blog in one day, my husband had to admit I had indeed gone viral.

(In case you are interested, my website is created and managed by Cody Smith, a software developer at Steam Engine Studios)

I was honestly having an internal struggle as to show Ashlynn’s face or not on national television. I had advice to do it, and advice to NOT do it. After agonizing deliberation, I decided I would be fine with it if the world saw all the other faces of apraxia next to her. I invited everyone locally that I knew who had a child with apraxia, including my clients. One of the mom’s made pretty blue ribbons with a star in the middle to represent our apraxia stars. All the kids and moms wore them. It was awesome and empowering. The kids were excited. The pressure was building. I was stressed to the max. I had my hair done, and was texting my apraxia mom friends. I had one piece of advice from Nicole who quoting Ronda’s book that really hit home:

“I’m not looking to escape pressure. I am embracing it. Pressure is what builds up behind a bullet before it explodes out of the gun.” Ronda Rousey

She was right. Let’s do this.

Well, let’s do this, until 4:00 came and went. I waited until 4:20 to call. No answer again. I called a colleague at GMA. She answered.

“Hi, it’s Laura Smith from Denver, and I hate to bother you but I was just wondering if our appointment was still on.”

“Hon, remind me your story again?”

“Oh, um, I’m an SLP out of Denver and my daughter who has apraxia met Ronda at her Denver book singing?”

“Ohhh ok. Hey, I’ll check. Let me call you back.”

Time ticked on. The kids’ faces became inquisitive. The mom’s faces became discouraged. I felt disappointed but then insanely guilty. All these kids came out for me, and I had disappointed them. I had wanted them to be part of this amazing national experience, and instead, they got to feel let down again. The mom’s felt bad for me, my heart cried for the kids. Sigh

I finally called back at 5:00 and was told that they had to push me off one more day because they weren’t sure if they wanted to do it.

“Wait, do what? The story?”

“Yeah…so sorry. We’ve just been going back and forth, but give us one more day.”

Insert every human emotion. Why would they have called me last Thursday if they weren’t sure they wanted to do the story???? Why did they CONFIRM a day AND time prompting me to invite our Denver apraxia fighters only to NO CALL NO SHOW???

Really?

The oldest child was devastated. He declared to his mom he still liked Ronda but he was mad at the news. I was mad with him. He’s one of mine now, and he had been disappointed. I was pissed too. I get it’s just their job, but these are my babies. They have enough disappointment. How dare this happen 🙁

Everyone went home. I was spent. I had my hair done, had cleaned my entire house and yard…..only to have someone no call no show. Wow! Just….wow.

I retreated to my phone to text the news to all the people I had told. When I opened my email, I found a letter from the chief editor at UFC magazine asking for my information so he could send an autographed glove to my daughter.

Wait…what?

Unbelievable! I was never a fan of the UFC, but I have to say, based on my experience, they are a freaking STAND UP organization!

I told Ashlynn. “I’m sorry the news didn’t come, but guess what? Ronda wants you to have an autographed glove!”

Ashlynn smiled and said, “Where’s Ronda?”

I replied I wasn’t sure but she was famous and couldn’t meet with us. Ashlynn said, “Ronda Rousey? For me?? Why?”

I didn’t have an answer. I don’t know. Because Ronda is just that awesome of a person?

I also found out through various channels that Ronda was on Reddit tonight answering questions. One brave SLP asked the following and received the following answer.

Incredible! How inspirational! Also, my friend from OK said, “Just remember, regardless of how this all turns out, you have brought apraxia awareness to millions.”

I hope so. That has been and always will be, my goal.

August 10, 2015
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: 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
Apraxia Walker Spotlight: Team Power – Why I Walk

Why I Will Walk for Children with Apraxia of Speech on September 19th.

by Linda Power

Many kids get medals in school and on sports teams as recognition of their abilities relative to peers. More subtle, but no less deserving, are the achievements made by our children with special needs. Such is the case with our 3 year old son Ashton, who was diagnosed with severe apraxia of speech last year. Something as seemingly simple as speech doesn’t come easy to him. It’s glaringly obvious every day how frustrated he is. He wears in emotions on his sleeve.

This year has been a roller coaster for our family. A few months ago, Ashton developed a severe stutter (common in apraxia) which took away the words that he had learned and regressed his speech into “Ada ada ada.” We were terrified that his stutter, which progressed rapidly, would become permanent. It was painful to hear and to watch him struggle every time he wanted to say something. I received the ultimate gift on Mother’s Day when Ashton walked up to me with a huge smile, holding a card he’d made in speech therapy and fluently said, “Happy Modders Day Moddy.” My eyes well up with tears just recalling that moment. While his stutter is essentially gone, Ashton still has Apraxia of Speech and gets “tongue tied” when trying to talk. His brain has trouble coordinating the muscles of his mouth to produce intelligible words. He still has years of speech therapy ahead of him, which is specialized and evidence based courtesy of a wonderful non-profit organization called CASANA. CASANA funds research and training, and helps educate the community about Apraxia. CASANA even provides scholarships for selected Speech and Language Pathologists to attend training events so they can disseminate information to the community and provide the highest quality treatment to children such as Ashton. We feel extremely fortunate that Ashton’s SLP Laura Smith was one of those selected to receive advanced training to become a CASANA recognized expert in Childhood Apraxia of Speech.

Whereas we, as parents, have Mother’s and Father’s Day to celebrate our hard work throughout the year, our kiddos with Apraxia, will have their day at the Apraxia Walk. We will celebrate their accomplishments during the medal ceremony where each and every child with Apraxia will have their name called and proudly walk up and receive a medal. Ashton, representing “Team Power” loved his and learned to say a new word that day, “Medal.” To his older brother, he referred to it as “My medal.”

The award ceremony is only one part of the wonderful day for kids. Ashton’s 5 year old brother, Adam, also had a wonderful time. They got to have their face painted, get to see a big red fire truck, get to walk (or hitch a ride on shoulders) around a beautiful lake with us, their supporters, all wearing Apraxia Awareness T-shirts. For our children with Apraxia, they get to meet and play with other children who understand their struggle to communicate. They get to see that they are not alone, and that they are supported in every direction they look.

June 22, 2015