SLP Mommy of Apraxia

Category: Childhood Apraxia of Speech

Why would anyone CHOOSE to coordinate a walk.

I am the current walk coordinator for the Denver Walk for Apraxia of Speech, benefiting the Childhood Apraxia of Speech Association of North America.

Before I was walk coordinator, I was merely a first year participant who had signed my family up to walk for my daughter Ashlynn. I remember signing up at the very last minute right before the T-shirt deadline. I did this, despite knowing about it for months before; because I wanted to make sure nothing else more important came up. It didn’t, so in 2014, we attended the Denver Walk for Apraxia. I had no idea what to expect. I just figured it would be some boring walk around the lake, but it would benefit CASANA, and that would be a good thing for awareness.

I do remember receiving emphatic emails from the current coordinator about raising money, everyone donating even just five more dollars etc etc, for us to meet our goal. She had a goal of 30k and I’m pretty sure they met it that year. I never asked for donations or solicited anyone outside our immediate circle despite this. I honestly figured, what could my meager attempts do? Leave it to the big wigs and people with connections to bring in the money.

The walk was AMAZING. I had NO idea Ashlynn would receive a medal in a medal ceremony, or that there would be activities beforehand that would be fun. I WAS on the email lists telling me this stuff, but for some reason, I must have missed them.

After that walk though, I couldn’t imagine Ashlynn not having another. The previous walk coordinators were stepping down after 7 years or so, and they were asking for new volunteers. I did actually read these emails, but I just assumed someone else would take the place. I seriously had no buy in, and no culpability.

Come February or so of 2015, I was talking to Sharon Gretz, the executive director of CASANA, and through the course of the conversation I realized there wasn’t going to be a Denver walk that year.

What???? I inquired.

Well, the previous coordinators stepped down, and there is no one to run it, was the answer. If someone doesn’t step up soon, there can’t be a walk this year since planning needs to start months in advance.

Shit. In that moment I KNEW I had to do it. The experience had been SO amazing for Ashlynn and our family that I couldn’t imagine her not having that again.

I’m already stretched super thin. I have this desire to be as involved a mom as possible while being an SLP. I’m working at my children’s school during the day, and then working nights and weekends so my children can be with their father when I am not there. How on EARTH would I plan a walk? Screw it. Minor details that don’t matter because apparently if I don’t, the walk won’t happen this year.

I pitched it to my husband. The answer was pretty much…

NO

Without going into detail, his reasons were valid. He knows me and he knows I would devote all this time and energy I already don’t have into this. Long story short and many compromises later…I ended up being the Denver Walk Coordinator last year. I originally began not feeling any particular commitment to it, other than making sure Ashlynn was honored as she was the year before. I hate to admit my husband was right, but the Type A in me started whispering to me that I can’t have my name attached to an event and not have it be the best I could do.

To make a walk happen is fairly easy. Set the date, secure the place, tell your immediate people about it, sort the walk day materials for the small gathering, and you’re set.

To make a LARGE walk happen, and a walk I felt I could be proud of, takes WAAAAYYYYY more work. I decided I wanted food at my walk, I wanted entertainment and family fun. I wanted the award ceremony to be powerful so I wanted music. I wanted the day remembered picture perfectly, so I wanted a photographer. I wanted the kids to have fun, like at a carnival, so I wanted games, and clowns, and characters. I didn’t want people to be bored, so I wanted activities.

I didn’t want people to be hungry or thirsty, so I wanted food and beverages. Oh, and I wanted to make more money for CASANA so I wanted an awesome raffle table that would entice people to buy more raffle tickets with all proceeds going back to CASANA.

Oh, and in the middle of all of it, I became 100% committed to CASANA. They keep their staff small and centralized to Pittsburgh, and rely on the help of walk volunteers around the country to raise their money. The reason for this, is to maximize the amount of money raised going directly BACK into the community to help our kids via research, iPads, grants for speech therapy etc.

I realized I wanted to help maximize their goal. CASANA was life changing for my family. I needed to raise enough money so they are life changing for as many families as possible in my position. It literally becomes an obsession and a vocation. I went from only caring about honoring Ashlynn, to making sure I raise enough money to help every kid and family possible affected by CAS in North America. I’m not exaggerating people.

THIS is the job of a walk coordinator. It is soooo much more than just organizing a walk that gives everyone warm and fuzzy feelings. You become so personally invested. You can’t understand why people register late. You can’t understand why people don’t make it their priority. You can’t understand why people are only peripherally involved. You can’t understand why people don’t understand they need to register. You can’t understand why people are okay with buying shirts from other people to attend your event. You become SO obsessed with not only helping your own child, but realizing how much your own child benefited, that you now want to help EVERY SINGLE child who has struggled like your own.

Oh, and might I add, it’s easy to do when you know the staff at CASANA. As a walk coordinator, you become personally involved with them, and by personally becoming involved with them, you realize even MORE, if you didn’t before…….how this non-profit you are out raising money for, is truly staffed with selfless people. You hear these horror stories on the news all the time of executive directors taking thousands of dollars in profit from the “non-profit.” Not true at CASANA. You learn what these people make and I honestly think they SHOULD be making more for all the hours they put into this non-profit. When you, in your heart, believe, like I do, that the staff at CASANA (all of them) should be making more than they earn because they truly EARN every single penny…..you are ALL IN. Every single dollar counts.

I wish I knew that my first walk. I thought I was a peon. The money I could bring in meaningless. People, as walk coordinator, I have literally organized fundraisers that only made $50. When I think of the amount of time and effort it took to set it up and to try and get people to go, and in my mind, we are still $50 closer to our goal, I ASSURE you, any and ALL efforts you make to get donations or to fund raise are appreciated.

This year, Denver is currently ranked 5th in terms of number of participants out of 90 walks…but barely making the top 20 in money earned. I’m pissed about that. We have so many teams, why isn’t the money matching that? Can you believe this keeps me up at night? I literally make NO money doing this. That’s how much I believe in CASANA. Can you believe I’m not the only walk coordinator who feels this way? I know the other walk coordinators via a facebook group. All day long people post things they are doing to help CASANA, or what places they are calling and emailing trying to get donations to make the walk the best it can be. Mind you, these are ALL volunteers working for FREE because that is how much they appreciate and believe in CASANA. We are all people willing to work for free, lose sleep, and possibly go on anxiety medication (lol) because we want every cent possible to go back to CASANA.

Last year I posted why people walk. This year I wanted you to know why I am a walk coordinator. It’s not for money or recognition, let me assure you. It’s because I believe in the organization I am representing. It’s because I love what they stand for, and I love what our children will take away from the walk that day.

It’s because EVERY CHILD DESERVES A VOICE. I would appreciate any donations to the walk. 85% of every dollar goes directly back to helping kids when you support the non-profit CASANA. They are amazing and a worthy cause. I can’t say enough. If you are so moved, the link is included below.

http://casana.apraxia-kids.org/site/TR?fr_id=1932&pg=entry

September 16, 2016
My head gets messed up sometimes

This is what Ashlynn has said to me twice today. It’s rather timely since I just wrote about a post about letting our kids know they have apraxia so they have a name for the problems they experience.

Ashlynn (I thought) has known she has apraxia, but I realized I said it a lot when we were still just trying to get her words out and her sounds right, but maybe I hadn’t said it lately.

This morning she called me Grandma, stopped, and then hit her head and said “ugh. WHY DO I DO THAT??? You’re not Grandma…you’re um………….” I waited patiently. “Mommy. You’re mommy. Ugh. My head gets messed up sometimes,” and she hit her forehead.

I quickly told her “Ashlynn, your head is not messed up. You have apraxia, and that is what makes it hard to get the words out sometimes and also why you may say the wrong word.” My husband quickly followed up with his own words of encouragement.

Two hours later I was working on my computer, and she came over and started talking to me. I was asking her what she wants for her birthday. She told me her standard: cards, papers, pens. She’s always fighting over Jace’s magna tiles, so I asked if she wanted magna tiles. She immediately said yes! Then she said, “I couldn’t think of that word: magna tiles. I said Legos but that’s not right. Ugh. My head gets so messed up sometimes.” I started to say something, and she interrupted and said, “That’s because I have apraxia?” I quickly agreed and told her that’s why she goes to speech therapy. (Except she hasn’t been to private speech lately because of some personal family extenuating circumstances). So, literally two minutes later I look up and see this:

It’s not the best picture, but she has a box of decodable books we keep in the living room open and she is trying to read them. She noticed me looking at her and she asked, “When am I going back to speech therapy mommy?”

Sigh

Apraxia sucks. Ashlynn is amazing and her head is anything but “messed up.” Why does she have to work so damn hard. Why does she have to know she has to work so damn hard. Am I doing enough? Am I saying the right things? I swear being a parent is half doing what you think is right, and half second guessing what you said and did.

It’s such an invisible disability at this point. No one would look at her and think apraxia. No one would look at her and think her “head’s messed up.” Ugh. That kills me. Look at her. She’s looking out our window here taking it all in. She is seeing and looking at WAY more than she says. Maybe one day I will know everything in her head. Maybe.

Sometimes, I feel like I’ve been jipped. Other parents get to hear the thoughts behind this picture. I try to read her eyes and her facial expressions. Oh she talks. That she does and she does it well now. I still don’t know everything though, and she knows it now too…..and I don’t know whether or not to be sad or happy she is empowered to know why talking and getting the words out is hard for her.

Sometimes I wonder if that’s unique to parenting a child with a communication disorder, or a more universal experience as a mother. I think of the ABBA song I love so much:

Do I really see what’s in her mind
Each time I think I’m close to knowing,
she keeps on growing,
slipping through my fingers all the time.

September 12, 2016
Lessons in emotional intelligence..courtesy of a 6 year old with apraxia

Ashlynn’s classroom has a color clip system for behavior. Basically, every child starts the day on pink, which is a neutral color, and during the course of the day, students’ behavior earn them a “clip up” or “clip down” depending on their actions. At the end of the day, they get a star to take home that is the color of where their clip was for that day.

Ashlynn has never had below the neutral pink color. On occasion, she has been coming home with greens and even some purple stars! Yesterday, she had a green star and I asked her why she clipped up today. She answered first that she didn’t know (easy, known, motor plan), but when I pressed more she said for sitting in her seat.

When we were leaving, I was able to ask the teacher, who told us it was because Ashlynn finished a writing assignment and stayed focused even as many others around her were not. I mean, maybe that’s what she meant by “sitting in her seat.” Who knows. Stupid apraxia. I never feel like I get the entire story, and how frustrating for Ashlynn that she knows but can’t convey everything she knows.

I made a joke to the teacher that I told Ashlynn if she clipped up she should know why so it can happen again! I started thinking though, maybe that’s not right. Mother Teresa was canonized this week and there were a lot of memes floating around social media. This one caught my eye and reminded me of Ashlynn.

My God I pray she keeps this mentality. She really does know who she is. She could care less about clipping up. I mean let’s be honest. If you’ve read my blog, you know that girl works harder than anyone else and is always trying to learn to write, to talk, to read, to do jumping jacks….like literally her play is stuff she practices in her various therapies. Basically, Ashlynn earns a clip up everyday. Most people have to learn humility, ESPECIALLY egocentric kids. As I write that, I don’t mean to imply there are *some* egocentric kids. Kids in general ARE egocentric. It’s their nature.

Not Ashlynn though. Nope. Ashlynn was born with humility. Seriously. I can’t tell you how many times she gets told she’s pretty on a daily basis and she always accepts the compliment with a smile and grace. I’ve never heard her once walk around bragging about anything, but conversely, she is not devastated by criticism either. If you don’t believe me, read this incident at the park where one of our worst dreams comes true and she is asked why she “talks like a baby” when she was just learning to talk and use her words and was putting herself out there. She handled it way better than me and I’m the adult.

Anyway, when I first started this blog, one of my most liked posts was called lessons from a tricycle. Really, this blog could be called Lessons from Ashlynn. I always talk about emotional intelligence, and I really wish it was talked about or even acknowledged at IEP meetings because it’s a real thing and people with it make this world a better place. Seriously. I would posit that most people need lessons in emotional intelligence, even adults….including me.

If you follow my fb page, you know that I won this award, a media award from ASHA, which is the governing body over ALL speech pathologists and audiologists nationwide. ASHA is basically our American Academy of Pediatrics. I unabashedly felt the need to publish it on my fb page. I would love to go to the national conference in November, but I probably can’t; but really, if I think about it, it’s just vanity, or lack of humility, that makes me want to be there so bad…..and that’s when I take a lesson from Ashlynn.

She just does her thing whether people notice or not, and I seriously feel like the biggest A-hole for thinking I need to go to some conference to be recognized. Oh Ashlynn. Here we are. You teach me lessons again and again and you are only six. Humility is probably on my top five virtues I admire in people. Honesty and integrity being up there too, humility is admirable to me and Ashlynn has it naturally. Keep it up my young chickadee. I’m so proud of you. I love you, I admire you, and I know you are destined for great things.

September 10, 2016
To tell or not to tell……..your child they have apraxia of speech?

I see a question that gets asked a lot. In fact, I asked it myself. It usually goes something along the lines of,

“Did you tell your child they had apraxia? If you did, how did you say it? What did you say?”

I remember thinking when I first saw this question that I wouldn’t tell Ashlynn until way later….and then…maybe if she still seemed apraxic, I would tell her. I didn’t want her to feel different. I wanted her to know I believed in her and I wanted her to believe in herself. I wanted her to know that she can do anything anyone else can do.

Yep. That was my stance…..

Until,

Sharon Gretz, the executive director of CASANA answered someone’s question. She made so much sense, I couldn’t help but immediately question my own decision. She told this parent that it’s important kids know from an early age what their problem is, so they have a name for the difficulties they are facing. Providing a name empowers the child because they realize their struggles are due to something that is real. In this way, they have a name for the struggles they are experiencing, and don’t develop their own schemas about it. These schemas anyway, are usually negative and may include: I’m stupid, I’m dumb, or, I’m different.

Aren’t we as parents the first to tell anyone who questions our child’s abilities that they are smart?? Aren’t we the first people to defend their honor? What do we use an excuse? Well, we explain apraxia don’t we? We defend our children’s honor by labeling them. Right?

So, why wouldn’t you offer that SAME defense to your child? You’re the first one to say your child is smart. I’m the FIRST one to say my child is capable. If I, if you, truly believe this; can you really think your child doesn’t know they are different? Do you really think that, or are you just hoping they don’t know?

I have a feeling it’s the latter. I have this feeling, because I have hoped the same thing.

Truth is, Ashlynn has always known. I remember when she had JUST turned three and was put in preschool as a nonverbal child, the teachers reported she would just laugh when they asked her to do something. I could see it in their eyes:

Low cognition
Poor comprehension

However, I knew….I KNEW as her mother, that Ashlynn laughed as a coping mechanism because she couldn’t do what was being asked. It didn’t matter if it was speech or otherwise. Ashlynn has GLOBAL APRAXIA, meaning overall motor planning difficulties. It didn’t matter what they asked her to do, she couldn’t do it…so…she laughed.

Every heard of emotional intelligence? My daughter has it in spades. If you haven’t, it’s because we live in a society who only values academic intelligence, completely ignoring the fact that a genius who can’t relate to people or get along with people can’t be successful in life.

No.

I’m ever so thankful I read that post and the response from Sharon. Before I was even sure my daughter knew what I was saying, I told her she had apraxia. Whenever she even remotely paused and looked upset, I would tell her “oh dangit. That darn apraxia!”

If you have read my blog for awhile, I talk about apraxia being the new stuttering. Back in the day, no one wanted to tell a child they stuttered. Surely they didn’t notice, so you didn’t want to draw attention to it. Years of research later, low and behold children who stuttered DID know they were different, and instead of understanding their disability, they developed shame.

Shame is a bitch. Shame develops when you feel as though you have done something wrong. If we don’t talk to our kids about apraxia, we risk them feeling ashamed of it. Apraxia is NOTHING to be ashamed of.

That leads me to my final thought.

The walks for apraxia taking place around the country.

I recently learned so many people think the walk is about awareness.

I mean, I guess. I can see that. Certainly a part of the walks is about awareness. Publicity leading up to the walk and various news stories all bring awareness and awareness is very good.

However, it may surprise you to know, especially from me, that the walk itself has very, very little to do with awareness in my eyes.

The walk, in particular, the medal ceremony, has EVERYTHING to do with honoring our children.

No shame.

We HONOR them for their struggle. We HONOR them for differences. We HONOR them for their perseverance and hard work..

We HONOR them. We RECOGNIZE them. Their family and friends HONOR them. Their therapists HONOR them. We all honor them, because despite the odds, they persist and achieve. We recognize their achievement in spite of apraxia, and they can feel pride, not shame.

Even if your child is considered “resolved,” I would urge you to rethink your stance on not telling them. People………..they KNOW. They may not know what apraxia means, but they know they aren’t like other kids. They know they are different.

On final thought. A label should never be used an excuse and trust me, our sweet babes are smart enough to use a label to their advantage. I’ve definitely heard a story or two about, “oh I can’t do that because I have _____.”

On the contrary, it’s a teachable moment to say, “It makes it more difficult for you, but YOU are capable and I believe in you.”

If you don’t believe me, ask my daughter some day! We are obviously an atypical family because I specialize in apraxia so I see kids all day with apraxia and of course Ashlynn has it; however, my youngest son asked me why he DIDN’T have apraxia. lol.

No shame in this house. Only knowledge…and knowledge is power.

Jumping her heart out at a fundraiser for the Apraxia Walk

August 27, 2016
Apraxia is for the BEST?

The 2016 National Conference on Childhood Apraxia of Speech has come to an end. As I sit in the plane, I look at the burnt orange, red, and brown sunset setting over wispy clouds and the windy city. Since I live in Denver, we are flying west, and it feels like we are literally flying into the setting sunset sky.

I get to reflect on my time here in Chicago, and honestly, the first and foremost emotion that I feel is gratitude. It is almost unbelievable to think that just a few three years ago, this conference came to Denver and though it seems like a long time ago, if I close my eyes, I can still remember the emotional whirlwind that was that time.

I was honored to give a talk with a fellow SLP, Alyssa, who specializes in Apraxia of Speech out in Las Vegas. It was Alyssa who had initially pitched the idea to me, and speaking with her felt as natural as breathing the air. We seemed to find a perfect rhythm despite living miles away and not seeing each other in person in the last two years.

Alyssa is inspiring to me, because I guess as a mom and SLP, I feel like my passion for kids with CAS is expected and natural. I do after-all, have a personal buy in. However, Alyssa’s passion comes strictly from knowing, finding, and heeding her calling. Treating kids with apraxia is truly what she was meant to do and I believe that is conveyed in her words, her actions, and her energy!

When we started our talk, Alyssa polled the audience to see how many people were parents. The Apraxia conference is unique in that is a place for BOTH professionals and parents to come and learn about CAS. Our audience was comprised of mostly parents, as we expected; but what caught me by surprise was the amount of many first time parents.

As they raised their hands, I was transported back in time. I remember being a first time parent attending the conference. I was anxious and overwhelmed, hoping I would learn things to help my daughter. This year though, I was the speaker, and I was looking out onto the sea of parents, and as I scanned their faces, I was emotional remembering my very self sitting in their seats. Alyssa said it best when she quoted a professor who was speaking at her daughter’s college orientation:

“You will succeed because you are HERE.”

All of these parents had shown their sacrifice and their commitment merely by coming to this conference, and she was absolutely right. I remember Sharon Gretz telling me once when I was lamenting over all of my daughter’s negative prognostic indicators, “Laura, never underestimate the influence of one kick-ass family.”

Oh, and that leads me to Sharon. As I said in my previous post, I did exactly what I set out to do, and hugged her and thanked her for everything she has done not only for me and Ashlynn, but to now the clients I have that benefit from CASANA. Ever humble, she blows me off, but I do hope on the days she is receiving criticism or feels low, she remembers all those she helped. This year as I shared my story of how Sharon helped me with many participants, I was surprised (not really) to hear how all these other people had also found hope because of CASANA and because of Sharon. People literally tearing up describing how Sharon had so graciously taken her time to listen to them and help them as well when they needed it the most. People who now were willing to volunteer everything they could to give back because of one person’s act of kindness.

Me with Sharon Gretz and another SLP apraxia mommy Nicole

This conference truly is unique. There are world renowned apraxia experts just as gracious, patient, and willing to speak to parents and give them free advice just as Sharon is, and I can’t help but to believe that is fostered from the top. If you are part of CASANA, you want to be as of much help to others not because you are expected to, but because you genuinely want to. In my case, I want to pay it forward. I can never repay Sharon, but I can help others and give them what she gave to me, or at least I hope I can.

International Apraxia Expert David Hammer walking toward the stage. At the conference, he is as accessible to talk to as any attendee.

This year, three years later, it’s hard to believe what a different place I am in. I wasn’t even anxious to give my talk. I was excited, because I finally felt I could give back, and that is a great feeling after feeling like all I was doing was taking from CASANA. That doesn’t mean the pain I felt during those years ever truly goes away. Much like Sharon when she teared up hearing my story, those emotions will forever be tattoed onto my soul. I showed a video of Ashlynn after she was first dx. Smiling, happy, and engaging, her speech was so poor but her energy was the same as it is today. I teared up watching it despite being well past those times, partly from remembering my sadness, and partly out of pride. I suspect now from observing Sharon and Kathy, another CASANA staff member with now grown kids who had apraxia, that pain will never be forgotten. I find peace in it now though.

Three years ago I knew not one other SLP mommy of Apraxia, and this year I have a picture with seven others. Ghandi said to be the change you want to see in the world. I put it out there, and it came back! I needed to meet others like me, and boy did I find them! Talking to them is like talking to an old friend. No background is required, they all just understand and “get” me.

SLP Apraxia Moms all in one place!

I was able to meet fellow walk coordinators and past bootcamp graduates. Sometimes, I would be sitting alone and hear a neighboring conversation. I would smile as people would relay their “it’s a small world” conversations and muse at coincidences. I would turn away and smile, wondering how people honestly believe in coincidences, because as you know, I believe a coincidence is nothing short of God telling you this is where you were meant to be.

Apraxia mom, Apraxia Advocate, and Apraxia Walk Coordinator Michelle who I have become friends with. I have a feeling Michelle is going to be part of a HUGE apraxia awareness movement this year.

Perhaps the icing on the cake for me, was sitting in the main ballroom during the closing ceremony. Ronda Rousey’s mom, AnnaMaria De Mars made a video specifically for this crowd and for this conference. It happened simply because I emailed and asked. You could have heard a pin drop while she was talking. People gasped when Sharon announced they had a video from her to us, they laughed when she told jokes, and they nodded as she talked.

In that moment, my apraxia mom friend leaned over and said, “you done good.” I smiled, because I finally feel as though I have paid it forward. After years of just taking because I was so desperate to help my daughter, I hope I have made a dent in helping others the way I feel I was helped.

Ms. Shelley Kelley, my kindred apraxia soul sister. No words required.

The closing speaker, Jennifer Keefe, who has a child with apraxia Danny Keefe who has been featured on numerous national news outlets said it best when she said,

“There is more good than there is bad in this world,” and Ronda’s mom in that video told us to think that “Maybe, it’s for the best.”

The theme this year of the conference was “Standing Strong, Facing Challenges.” It’s fitting because, without our trials and tribulations, we may never be as motivated to succeed and we may never be as motivated to defeat the odds, just like Ronda did, just like Jennifer Keefe’s son did, and just like Ashlynn will.

July 11, 2016
Apraxia National Conference: A candle in the window

It’s been three years since I last attended the national conference on apraxia. At that time, my daughter had been diagnosed with apraxia for just under a year, and I was still scared and sad about what the future held for my sweet Ashlynn.

I re-read my blog post I wrote after that conference, and it didn’t begin to capture all the emotions I had at that time, or what those three days actually meant to me.

It might have been because I was in the thick of it then, scared and sad on the inside, but all game face on the outside just trying to learn as much as I could to help Ashlynn.

I mentioned meeting Sharon Gretz, the founder of CASANA, and said merely that I felt an immediate kinship with her and we swapped stories. That is all true I suppose, but that meeting was soooo much more.

I remember she told people in the fb group to come and introduce yourselves if you were attending the conference. My husband went with me, and I remember telling him I felt like I was about to meet Julia Roberts. I was nervous, anxious, and sweating profusely. When I walked up to her and introduced myself, she was immediately kind and greeted me with a sincere smile. I wanted to act smart and professional, but as I started talking about Ashlynn I choked up and had tears in my eyes. Embarrassed I looked down and finished my story, and as I slowly looked back up, I saw she had tears in her eyes as well. For once in those lonely 9 months where I felt like the shittiest SLP on the planet for having a kid I couldn’t help talk, I felt I had met someone who understood and who was going to help me. Sharon’s not an SLP, but she had completed all the coursework to be one minus the clinicals, and she was the closest person I had to understanding how I felt and how to help without judgement.

That’s the real story. Maya Angelou said people will forget what you said, but they will never forget how you made them feel, and that’s true. I felt heard, I felt understood, and I felt hopeful.

I also mentioned learning about a bootcamp, and I non-chalantly talk about how I will apply.

Hahahaha

I’m laughing because the process of getting to bootcamp was anything but non-chalant and easy. It was like applying and trying to get into graduate school all over again!! Oh how naive I was!!

In a short three years since that conference, my life completely changed. I’m trying to find a word that fully describes it. Metamorphosis? Maybe that’s it. At that time I was a caterpillar inside my crysillus who couldn’t even imagine the new world I would see and the new possibilities that would be available once I had my wings.

CASANA gave me my wings. Is it no wonder then why I volunteer my time as a walk coordinator, try to spread awareness, and mention them wherever I go? How can you ever repay someone who literally pulled you out of a dark place, gave you hope, and changed your life and more importantly your CHILD’s life for the better?

I really and truly don’t know where Ashlynn would be right now without the knowledge I gained from CASANA. I know for sure she wouldn’t be talking as intelligibly as she is. No way. She’s severely impacted and without proper treatment, kids with apraxia do NOT just get better on their own.

She’s mostly resolved of her apraxia at this point, so now conference is about learning how to help her with all the residual problems, like reading, writing, and word finding just to name a few.

It’s also about learning new things and gaining new ideas to help my current clients.

It’s about going back and shaking the hand and hugging the people who made all of this possible and saying thank you for being my candle in a window on a cold, dark winter’s night (Thank you REO Speedwagon for those lyrics).

It’s about going from the only SLP on the planet who had a kid with this rare speech disorder to meeting in person all the others I have found just like me through social media.

Its about seeing all the other SLP’s nationwide who have decided to commit themselves to helping kids with CAS and being in awe and humbled by their commitment and love for our kids.

Most importantly though it’s about this girl right here. She was sad to see me go, and for the first time in her almost seven years, she told me,
“I will miss ya mommy.”

She also asked me if one day she can go with me to the conference. I smiled and told her yes, because I can’t think of anyone who deserves to go to the conference more than her. I hugged her and told her,

“One day baby. One day, and you’ll be the star of the show.”

July 7, 2016