SLP Mommy of Apraxia

Category: apraxia blog

Ronda Rousey changes public perspective about disability

In the facebook group, Ronda Rousey: #knockoutapraxia, I love hearing from people who were inspired by Ronda, and recently, a member named Shawna posted that she wrote a school paper on the very subject.

When I met Ronda and wrote my article, it was never about making her a spokesperson for CASANA (even though Ronda that would still be awesome if you are reading this). It is the fact that parents, who experience many dark, lonely, and worrisome hours when their child is dx with a rare disability people don’t know much about, can see someone who made it out on the other side, and did so successfully. That was my goal along with raising awareness. The goal was HOPE and INSPIRATION. Love this story. Thanks Shawna for sharing!

For this journal I chose an article about Ronda Rousey because she has apraxia of speech.

Ronda is an example of changing public perspective about disability because she became famous before anyone ever learned of her condition. My youngest son has apraxia of speech. When he was younger I was obsessed with understanding his potential outcome. He began intense speech therapy shortly before his second birthday. By this, I mean I took him to three different therapists, four days a week for intense one-on-one sessions. I wanted to know how it might help him because having your two year old committed to such a schedule can make you feel awful about forced learning.

Ronda’s story is an example of how a person can overcome a tremendous amount of social anxiety and change how the public views disability.

Within this article we learn how Ronda experienced anxiety related to public speaking and had her sister help her at speaking engagements early in her career. To know that she was possibly affected, at birth, by deprivation of oxygen which led her to have this condition is paramount. The general public tends to assume if someone sounds differently-abled then they must have a mental deficit. To see Ronda achieving great things in life while dealing with a communication issue helps people understand disability has many different meanings. Tragically, many people will excuse a disabilities importance if they can find a way to blame it on a factor such as environment or self infliction. I do not agree with this perception, but having Ronda talk about how she was given this disorder by no other contributing factor than deprivation of oxygen, forces people to accept it. The public views her as competent in all areas of life including her ability to speak. Therefore, she is educating the general public in a way they do not realize.

She’s obviously beautiful and a lot of men would like to date her. Some might shy away from her if they heard her struggling to speak. They would be uneducated enough to assume she has mental disabilities. She has presented herself as a strong, successful fighter and now we learn of her struggles to speak.

Before anyone knew her disability they knew only of her abilities.

I think this personal story of Ronda might encourage people to be more compassionate. If you watch her interviews there are moments where you see her still struggling to find words. I would never have the deep understanding of facing a communication disability if I did not witness it firsthand from someone I love with my whole heart. In the article she talks about how her sister remains someone who speaks for her when she has moments where the words will not come out of her mouth. In general, everyone has some minor symptoms of apraxia. Have you ever struggled to remember the name of an actor in your favorite movie? You can see their face but you cannot recall their name? Does it ever frustrate you so much you have to grab your phone to Google their name? That is what it is like for someone with apraxia to even make sounds for speech. For the public to realize someone as big and strong as Ronda faces adversity with something we all tend to take for granted, undoubtedly leads to understanding.

The correlation between Ronda being an MMA fighter and the struggles of all children with apraxia of speech does NOT go unnoticed within the apraxia community I am deeply involved with.

For us, being able to show our children someone they can relate to, and show their success in every aspect of life, is difficult to express in words. Apraxia is also something diagnosed in adult stroke victims-people who once had an ability to speak but now struggle with words to define things they know full well the meaning of. These are people who fight to develop or regain skills we are normally given with ease.

The analogy of her fighting and the fight of all people struggling to communicate does not go unnoticed.

In closing, this is an issue I have a difficult time speaking about. Ironic, given the struggles of a population trying to learn how to communicate basic wants and needs. When I first learned of Ronda’s diagnosis of apraxia I immediately looked for videos of her speaking. I thought, “This is someone who is already a success in the eye of the public. To hear her speech and to know her struggle will encourage compassion because people will see she has all her other abilities.” This is a big deal for the apraxia community. Families of those struggling with apraxia feel like info-mercials.

|Some of us have been known to hand out pamphlets about our child’s condition just so that people will quit staring in public.

I have been known to give out little business cards with a brief description of my son’s condition. Not only to get people to quit making him feel anxious, but to make people see that you never know the struggles of the person next you in line at the store. Ronda is helping people to have empathy because she expresses her social anxiety. She is a person who could knock someone out for making fun of her, yet she talks about shutting down and becoming overwhelmed with emotion when faced with communication struggles. That is profound when thinking of others and their struggles.

October 25, 2016
Anxiety as a special needs parent feels like…..

Anxiety as a special needs parent of Childhood Apraxia of Speech feels like……

It’s my fault. Endless intrusive thoughts wondering what caused it, and despite coming up empty, still feeling like somehow it must have been something you did.

I’m not doing enough. Despite working tirelessly and endlessly for your child, you will continue to see her struggle, and it feels like you have missed something; and the enormity of the responsibility is crushing.

Doubt, doubt, and more doubt. There is always a decision to make in parenting, and it feels like there are never any easy answers, only tough choices, and you’re never sure you have made the right one.

I’m failing. Thousands of dollars dumped into therapies that help, endless restless nights, tireless fights, but still seeing low scores leaves feelings of failure…and nothing is worse than feeling like you’ve failed your own child.

Getting on and off the bus at the wrong stop over and over. Even after months, sometimes years of therapy, you still feel like there is no end. When one area seems to improve, another area of concern arises.

I’m falling. Out of touch with friends, family, life outside of therapies, and yourself.

Exhaustion. Physically. Mentally. Emotionally.

Never ending worry. Am I doing enough? Will my child make friends? Will he/she be successful? Will people see past their disabilities and see their abilities?

The weight of the world at times. A result of all of the above.

Lonely. Finding support and others who truly understand this journey is difficult. Isolation is real.

Thank you to Kendra Jenkins, an apraxia mom and advocate who commiserated and collaborated with me to write this simple, but hopefully powerful post. There is nothing easy about being a special needs parent, but there is always a silver lining, and the silver lining is finding others who can bring you comfort simply by saying “me too.”

Me and Ashlynn

Kendra and Talan

October 23, 2016
An open letter to millennial cynicism, indifference or neither?

Non-profit.

What does that word mean to you exactly? No really, I have over 300 email subscribers, 1300 fb subscribers, and….this can’t be right…but according to my statistics I see 10,000 visitors per month. That’s crazy considering I get maybe 40 likes on a good day on my fb page and a couple comments per month on the blog. I know SOMEONE is reading this blog though, so sincerely, I want to hear from you.

I never thought about non-profits much before I became involved with CASANA. My family is Catholic, so my mom donated (and still does) to Little Sisters of the Poor, St. Jude’s, and I think…maybe some veterans group because my dad and her dad are veterans.

When I started a family of my own, I followed in my mom’s footsteps donating to St. Jude’s and a couple of times to March of Dimes. My sister donate (s) (ed) to St. Jude’s too and at one point we had the conversation that the free stuff they send us with their mailers, which include note pads and address labels has at this point, exceeded the price in the donation we actually sent in! Basically, what good was our donation actually doing? It didn’t stop us from donating though.

Well, then I had a daughter, and then she went onto have delayed milestones, and THEN she went on to be diagnosed with Childhood Apraxia of Speech, and THEN, I found CASANA. CASANA…which in my mind was this HUGE non-profit. Actually, though, I didn’t KNOW I had found CASANA at the time. In my sad, lonely hour of desperation, I found a facebook group called “Apraxia Kids: Every Child Deserves a Voice.” It had a bunch of followers, so it seemed legit. Only problem was, I had to request to join! Why is that a problem, you ask? Well, let me put it this way. When your children go to bed, and you are awake, and one of them has just been diagnosed with a rare disorder….you have questions, you are sad, you want to meet someone….ANYONE…who knows what you are going through. Oh, and I’m a millennial, and I like things NOW.

I was approved very quickly. Yes! Score! I read through some posts and posted my own. I was sad and lonely and needed someone to tell me it would be okay. Numerous people responded quickly. I liked that. I hate to admit I’m that typical millennial…but instant gratification..yep. This was my group! One of them was Sharon Gretz. That name meant nothing to me at the time, but she was kind, and welcoming, and seemed to understand. I went on to post many, many more posts from my first. Each time I was met with wonderful and supportive comments, and most of the time, Sharon would comment as well. I’m not quite sure how long I was in the group, but I realized Sharon knew her stuff. This Sharon lady got it. Then I realized, this Sharon lady was the admin to the group. She basically ran it and moderated it. I appreciated her dedication to not only helping and responding to me, but to most of the posts that were written.

Through the group I found out an apraxia conference was coming to Denver, where I lived. My daughter was dx the previous year and I KNEW I had to go. The conference seemed big and important. I knew Sharon would be there and she asked people to say hi to her. I still had not connected CASANA to apraxia-kids.org in my mind. I actually never gave it a though that Sharon ran a non-profit and was behind the fb group but also the conference. Seriously, not one thought in my mind. I knew she was connected to apraxia though and she would be there.

I met her and it was awesome. There are only so many times I can talk about the encounter, so read more of my blog if you are interested. I sat with a group of SLP’s who talked about a bootcamp. This was when I first realized that apraxia-kids, the fb group and the website, was connected to a non-profit called CASANA. I started to realize that Sharon was the founder. After that conference, I had decided I wanted to get into bootcamp, but I also felt guilty because I had no money or funds to donate to CASANA. I remember telling a previous bootcamp graduate and excellent SLP in NY Christine Murphy, that I felt incredibly guilty to know I had taken so much from CASANA and wasn’t able to give back. As many parents who read this know, having a kid with apraxia means a lot of money goes to therapies since most insurances don’t cover. She told me not to worry. She said she had seen I was active in the apraxia-kids fb group, and THAT was giving back to CASANA.

That really hit home with me. It made me wonder why that was giving back. Why would responding to posts be giving back to CASANA? Then I realized. Sharon takes her job as admin to that group very seriously. She wants to give people help and advice, and not just ANY help and advice, but quality advice. I remembered how she had approved my request to join late at night, and then answered my post. I realized in that moment, Sharon works more than her 9-5 for that non-profit. She literally works around the clock.

I was accepted to the bootcamp, and that’s where I REALLY understood the connection. I met most of the CASANA staff members and was blown away. These two women were once moms like me, who founded this non-profit not only of the love for their children, but to help other moms in their situation…moms like…ME.

CASANA was offering this costly intensive training for minimal cost to the SLP’s attending it, so that quality therapy and expertise would be available to families spread out through the entirety of North America. Yes friends. Many neighbors to the north…aka…Canadians were there. Sharon was VERY clear at the start of bootcamp that her expectation for every SLP in that room sitting before her would be dedicated to CAS education and awareness. I actually was a little scared of disappointing her, her expectations seemed so large. However, I KNEW this was a woman dedicated to the cause and dedicated to her non-profit.

After bootcamp, I went back to my Denver community and through a course of a conversation with Sharon realized the Denver Walk wouldn’t happen. As most of you know, this is what prompted me to become a walk a coordinator, and actually, my last post highlighted for me that this is how MOST walk coordinators around North America find themselves in the same position. That was kinda news to me. As I mentioned in my last post, I met another CASANA staff member through this endeavor named Justin, and if there were ever a person meant for his job as event manager…it’s him. Calm, encouraging, kind, and supportive; despite 90 other walks taking place nationwide, Justin never makes you feel rushed or that you don’t matter. Encouraging, passionate, and ALWAYS positive, Justin will help any person coordinating a walk feel they are the best. We need him! He talks to ALL 90 of us every year as part of his paid position. The walks literally could not happen if we weren’t taking directions from Justin.

That is why I was so taken aback to receive a private message the night after my walk from a random person in the U.S. She was concerned about a post I made in the Ronda Rousey: Knock out Apraxia group in which I said 85% of funds go back to the community. She said I was “mis-leading” donors.

People, let’s just say she caught me on the wrong day. I literally get this post after I am sitting on my couch, utterly worn out and exhausted from coordinating a walk of over 400 people….for FREE. Literally, the last thing I need/want to hear after spending months and hours of my free time coordinating a walk for a non-profit I know personally now and believe in, is how I am misleading people.

NO

F that.

What is wrong with this generation? I actually typed that in and found this enlightening article. http://www.givinginstitute.org/news/258798/Breaking-Through-Millennial-Cynicism.htm

Why doesn’t my generation trust non-profit’s anymore? I wish I could say this woman was an outlier, but I don’t think she is. My own husband the year I first coordinated the walk (and this was after I had received all this education from CASANA for only $500 and a plane ticket to go to bootcamp) asked me about the company’s money. We actually pulled up the public IRS form. I can’t recall exactly what it said Sharon made, but it was less than our salaries and I reminded him she literally worked around the clock. She answered me in the wee hours at night when I needed her. I’m not saying she does that all the time, but she did that time.

Something being touted this year, by others and by myself was that 85% of donations go directly back to the community via research, education, grants for therapy, and iPads for kids. This percentage was based on an independent audit of the 2014 form. The reason for an audit and not just looking at numbers like the public can do on the IRS form is, if one were to JUST look at the money spent on grants or on iPads, it does NOT take into account the person (or persons) behind the scenes getting paid to process that paperwork and do the dirty work. You can’t just look at one number that shows what is donated, without taking into account that some salary money ALSO made that happen. It’s just common sense. You can’t have CASANA donating this and that without someone behind it actually processing it.

Oh..and what about the walks that actually bring in most of the donations. They have two staff members helping 90 volunteer walk coordinators with that task. TWO. They rely on volunteer coordinators to maximize the amount of money going directly back into programs and grants. These people shouldn’t have to work for free!! Yes…gasp. They have a salary. If they weren’t there, no walks could happen period. Volunteers can do a lot, but we can’t do everything. Let me tell you, these two people work beyond their 9-5. I have had them email and message me back and give me their private telephone numbers so they would be available on the weekend when walks take place. That should speak volume to their dedication. They DESERVE their salary and work over their salary and shouldn’t be scrutinized and judged.

I told this person that the Denver community had benefited greatly. I knew numerous families who had received an iPad, and literally know tons of families, including myself, who have now received the grant from Small Steps for therapy. Oh, and we also have THREE SLP’s in the area who have been trained by CASANA under their “education” agenda. That’s three SLP’s available to consult, provide differential dx, and to also see kids with apraxia for therapy ensuring they get the best possible therapy. Folks, that is DIRECTLY affecting our community, and just because it’s not categorized under “therapy” on an IRS document, it doesn’t mean it wasn’t the outcome. Just ask my clients, or the other bootcamper’s clients, or the people who have attended any presentation we have given.

That brings us to research. This person was concerned that in 2014, 30K was given to a research study. Gasp. How dare they? I mean, really, what is the alternative? CASANA should invest thousands of dollars into helping kids get speech therapy that doesn’t work for apraxia? Seriously people, that is not an exaggeration. Apraxia is THAT serious of a speech disorder. If you are reading this blog and have any familiarity with apraxia at all, you know that is a potential outcome of the disorder, no matter HOW MUCH therapy you have. We need research so we know what to do!! So that the future generation of SLP’s currently in graduate school are TAUGHT what to do, unlike me. If it wasn’t for CASANA, I still wouldn’t know how to help my kid! I helped her for a year using what I thought were “research based” interventions….and they were…but NOT for apraxia!

Finally, lets talk awareness. Have you ever told someone your kid has apraxia and they didn’t know what that was? Okay let’s all have a good laugh now! bahahahahahahaha

I mean, parents reading this are ALL nodding their head right now and being like yeah…most people I say apraxia to don’t know what is is. So guess what we need? AWARENESS. We need people to be aware so our kids can get the help and understanding they need for their unique needs and profile. Guess what this takes? A PERSON driving that. A person who gets a salary. CASANA makes TONS of graphics, informational brochures, inspirational and informational memes for all of us to share spreading awareness. Apraxia Awareness Day is now a THING thanks to them. I’m not quite sure what category that falls under on the IRS form..but I’m thinking it’s probably salary. I could go on but this post is getting long.

Bottom line is, why are we so cynical of non-profits? I know it’s partly because major ones make the news about scandals, but people, CASANA is not this organization. If it were, do you really think 90 volunteers nationwide would commit to coordinating walks that take an unfathomable amount of work and time? All 90 of us know the staff members at CASANA and we don’t get ANYTHING in return than what CASANA offers to EVERY child and family affected by apraxia: quality research, education for parents and professionals, speech therapy grants, and iPads for kids. We don’t get anything more, oh wait, I take that back. They gave us a picture frame last year to frame our favorite walk picture.

Come on! Stop the cynicism. Support the cause! Our children need you! Our children deserve a voice, and CASANA is working tirelessly! With event managers texting on weekends, to the executive director responding to fb posts written by desperate sad parents at night, CASANA is a non-profit dedicated to making sure every family feels supported and EVERY child has a voice!

Oh, and as a last word, I do really want to hear from you. What does the word non-profit mean to you? Does it incite doubt and suspicion or hope and inspiration? Maybe, you just have never thought about it much and indifference is the best word to use? I don’t know. That’s why I’m asking this last one is NOT rhetorical. Tell me your thoughts.

October 4, 2016
Homework and special needs? Insert silent cursing in my head.

Homework. I’m gonna be honest. When I was a young, enthusiastic SLP, I assigned speech homework all the time. Most of the time, it didn’t come back. I could never understand what the deal was. It’s seriously like 5 minutes of their time. Who doesn’t have 5 minutes?

Man, sometimes I want to go back and smack some sense into that young SLP!

Let’s talk homework. I know most parents dread it. That wasn’t a typo. I just wrote parents. I know this, because I hear it all the time. Now, don’t get me wrong. I’m not going to sit here unfortunately, and tell you homework is not important and our kids shouldn’t have it…I don’t believe that either. BUT……

Now, I want to talk about homework and kids with special challenges. Seriously people, if parents of kids without challenges want to pull their hair out during homework, let me just give you a tiny peak into my life.

I have a kid who actually wants to do homework, like I was. Thank God. Everything I am about to tell you would only be THAT much worse if she didn’t, and from what I hear, most kids DON’T want to do it. It starts with reading, which we are supposed to do for 15 minutes every night. That’s usually doable. I say usually, because in the time I pick her up from school at 3:30, we usually have some sort of extra therapy (Speech or OT) or extra curricular we have her in hoping to catch her up, and they also assign hw. I actually have her in less than many parents I know because their kids are still requiring more than 1x a week therapy, just as an FYI to any professionals reading my blog gaining some perspective. Anyway…I like reading because at least it’s a time limit and not an amount. Actually, that would be nice if instead of an amount, we were given a time. Let me give you an example with a recent math worksheet.

This was a packet. A PACKET people. There was a pie graph with nickels and pennies and we were to spin a paperclip with a pencil and then document how many times the paperclip landed on either coin and we were to do ten trials on spinner A and ten trials on spinner B. Then on the back we were to compare. It was a great activity. I looked at it and realistically thought we could complete it in a week. It was due the next day.

Sigh

Okay, to start, spinning a paperclip with a pencil tip is hard for even ME and I’m an adult without motor planning issues. You can only begin to imagine how much time was actually spent on just trying to keep the pencil tip in the paperclip and spinning a spin that actually stayed on the graphic. Basically, the task turned into learning how to spin a paperclip with a pencil…I’m serious. Now that I have some foresight, I think maybe it would have been best if I were to spin and then she were to write down the results, because writing down the results also doesn’t just teach her math, it’s another OT (occupational therapy) lesson. She would mark in the wrong column and then have to erase, which sounds fast…but with motor planning, NOTHING is fast. I was so frustrated after 5 trials of just the first spinner (and mind you we had 15 more to go) that I stopped there…..because after that we had to shade in a bar graph. Ahh yes…”shading” in with a kid who has motor planning. Do you know the serenity prayer? I was repeating it in my head over and over and over again. We are now at least 30 minutes into math hw and this is after the 15 minutes we did of reading. Nevermind I have my own work to do from my job that I still have to get done before the next day. I have to do her hw with her. Sigh. Okay….graph is done. Awesome…turn the page…..and….math calculations.

Silent cursing in my head. Big deep breath. Stay calm.

“Okay honey, so let’s count how many more times we landed on the nickles and write that number.” Oh yeah…writing…that’s a motor plan too. She forgets how to write letters and instead of “calculating” the task in now a handwriting and number formation lesson. FML The ONE silver lining is Ashlynn is not frustrated at all. Thank goodness. I don’t know how she has this amazing tenacity, but she does, and I am so thankful, because this night looks much more difficult in many houses with kids who do get frustrated and want to give up and fight them.

We finished all the math in about 50 minutes only completing 1/3 of what was required. Is this what a first grader is supposed to be doing? Because I also put her to bed early because she’s six, so between 3:30 and 7:30 we have four hours to drive to a therapy, attend a 45 minute therapy, fix dinner, eat dinner, and then do homework and then go to bed. I get why parents don’t do it. I do it because I’m a type A personality and if something is required I can’t let it go.

The school recognizes that kids should not have hw all the time, so they only assign hw M-Th. I guess they think this is helpful. It’s not. I asked last year AND this year for them to send the hw over the weekend…when we have lots of time…and we will complete ALL of it. It hasn’t happened yet, but seriously, if the goal is the amount, than I need more time, which includes the weekend. My kid has special needs. Other kids aren’t challenged by the motoric acts and attention issues that we have. There is no other option than more time for my kid. It’s the way it is. Either that, or we set a time limit, like reading. Work on reading for this amount of time. Okay, we can do that.

I go back to current IEP meetings I am in now with a MUCH different perspective than my young, pre-kid, SLP self. Speech homework?? Speech homework?? Ahahahahahaha. Yeah, no wonder parents wanted to laugh. I just had no idea. I think back to kids I had with ADHD. Ashlynn has it minus the hyperactivity, and if anyone or anything enters the hw room she looks up and is gone. It takes time to regain her attention, find the problem she was working on, and then continue our work. When this happens at least 10 times during the hw assignment, we are talking a sizable chunk of time!

You know what really sucks about homework though? It’s that OUR kids, MY KID, need it the most, and they take the LONGEST to do the amount the average kid is given; and because they need more repetition, they get MORE than the average kid.

Think about that! Isn’t that jacked up??

So, for a kid like Ashlynn, an average hw load already takes her at least double what it takes a typical peer, and because she needs more help, she also GETS double the work.

My apraxia sister with a 2nd grader in Oklahoma wrote it best the other night in a text to me saying simply,

“Global Apraxia SUCKS!!!”

Yep. That sums it up.

October 2, 2016
An open letter to siblings. Always be there for each other.

Jace, not only have you had an EXCELLENT and continued start to the school year, I am so proud of you for your behavior at this year’s apraxia walk. I know it’s not easy to see Ashlynn get a medal for apraxia, and you don’t understand why. Not yet anyway. Either way though, you stick by her side, held the sign during the walk, and supported her the best way you could.

You asked me why you didn’t have apraxia, as though it was something to want to have. Though this makes me happy for Ashlynn’s sake, it also makes me sad. One day, when you understand what apraxia is, you will also understand it is not something to envy, and because of it, this may be the only award she earns during her school career.

I see you in karate. We put you in this so you had something to be proud of that was just your own! It worked. Your motor skills are developing at lightening pace speed. As your mom, it’s remarkable to witness. Both your grandfathers on each side were very athletic. They had great “natural ability” as my dad describes it. You have that too. I see it. I want you to remember Ashlynn cheers you on at your karate classes. She is your loudest supporter when you earn a new belt, and I want Ashlynn to remember how you were there for her too at her apraxia walk; cheering her on and holding her sign when she got tired.

My dad, your grandfather, is a BIG believer in family. He’s like this because his youngest brother, my godfather, died at 27. I don’t think he’s ever forgiven himself for it, even though it was not his fault. He always told me though, had his brother called family…aka him…aka your grandpa….he wouldn’t have been dead. He wanted to make sure the same for me and my siblings, and I want to make sure the same is true for you and Ashlynn. Regardless of your fights or squabbles, at the end of the day, family MUST always be there for each other. That is the blessing of a family. That is the gift of a family. Family is love, and as Corinthians reminds us:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always hopes, ALWAYS perseveres.

Whatever the challenge, a parent’s greatest wish is that her children, whom she loves equally, will be there for each other as well. In my absence or presence, I always want you two to “have each other’s back.” The world can be cruel. It can be lonely….but one thing you should always be able to count on is your family.

This year, even cousins came. 1st cousins and 4th cousins!! My heart literally swelled. To have that kind of support is a blessing, but it’s also taught. I was taught to be there for family, and I wish to instill the same value in you.

4th Cousins!!

First cousin Kayla!

3rd and 4th cousins!

I’m proud to be part of this family. I’m proud of both of you! Don’t ever take for granted or squander the blessing of your family. You will both drive each other crazy at times and you will hurt each other at times, but always remember, love is not easily angered and it keeps no record of wrongs. Please always love each other like you do now. That is my greatest wish.

I love you both so much.

Love,

Mommy

Love,

Mommy

September 27, 2016
What does one say when giving a speech at an apraxia walk?

Being a walk coordinator, you have one job that is a must. You must give the speech and hand out the medals. I mean, I guess you don’t have to, but typically this responsibility falls on you. I like to write, and I also took speech and debate all through school, so these two things don’t make me nervous. Someone asked me if I cry when giving the speech, and I confidently told her no. This year though, I did get emotional toward the end.

Someone asked me if I get nervous, and I do…but not because speaking to a crowd or writing a speech makes me nervous. No. What makes me nervous is the pressure I feel for it to be good. I want it to be powerful. I want it to be meaningful. Worrying that it won’t be is what makes me nervous.

I hope it was meaningful to the walkers.

Hi Denver walkers!

I am so honored to be standing in front of over 400 people who love and know someone with Childhood Apraxia of Speech. Every year this walk has grown in size, and this year is no exception. We are here honoring 43 children with Childhood Apraxia of Speech.

43 Children who work hard every day to the one thing many take for granted….

SPEAK.

Denver continues to be a VERY strong Apraxia Community. Out of 90 Walks taking place nationwide, Denver currently ranks 5^th in terms of number of participants. I remember when my daughter Ashlynn was dx, the ONE thing I wanted more than anything, was to find others like me and her, and then to find others who had OVERCOME it.

Honestly, that is my hope for this walk as it continues to grow over time. A lot of kids get better and then stop coming, but I truly hope when your child is doing better, they continue to come and stand up here with a microphone speaking words of hope to the generation after. I have seen walks now where young people have come back to give speeches and sing songs. That is my continued hope for this walk, and I guarantee you, my daughter Ashlynn and I will be part of this community for years to come.

I was talking to a 4^th grade student with apraxia last week, and he was asking me how rare apraxia was. I told him every 1 and 1000 child will have it. To put that in perspective, that would be 1 child in every two elementary schools in our district. He remarked matter of factly,

“and that child is me.”

Yes I said. That one child was him. 🙁

He told me he couldn’t wait for the walk so he could meet other children like him. Sweetie, I hope here you have found them and feel in good company.

To all you others, I hope YOUR child is in good company. I hope YOU are in good company. When I attended the CASANA conference this past July in Chicago, Sharon Gretz, the executive director told us:

“If you are feeling nervous, or if you are unsure, take a deep breath, for you are with your people.”

I wish to tell you all of that now. Children with apraxia, you are with your people.

Parents of children with apraxia, you are with your people.

I may be biased, but I can honestly tell you Children with Apraxia of Speech are among my favorite people on this planet. Though all individual and unique, I don’t have to meet your child to know:

They are a fighter

They are resilient

They have a heightened emotional intelligence

They inspire you

They inspire me

Most of you know, this walk benefits CASANA (The Childhood Apraxia of Speech Association of North America). It sounds like a HUGE non-profit, but actually it is staffed as small as it can be and relies on volunteers around the country…like me and all the people who helped me this year, to run the walks. They do this to maximize the money they can return to the community, our community..to my child..to your child. I do all of this as a volunteer because I believe in CASANA and I have personally seen time and time again as a mother and as an SLP how our efforts today directly benefit the children I see before me.

I truly feel honored to look out at you now and see many faces of apraxia whom I know. Because of CASANA, many of these faces have been fortunate to receive iPads, speech therapy through Small Steps, and quality therapy thanks to CASANA. I’m so happy our community is large and strong, but I do wish our fund raising efforts would match it. For a walk of our size, it is very common to raise 30K dollars, but it takes all of us going out of our comfort zone and asking people to donate. I just checked and we are at 20K. My goal was 30K, and if we reach it, not only do we help so many children in our direct community, but we will also get a FREE parent seminar from Sharon Gretz, the executive director of CASANA. I just want to tell you all we have until Thanksgiving to keep raising money for our walk! It doesn’t end here!

That said,

Before the ceremony gets underway, I just want to say in closing,

If you are new to this journey, take heart. There is hope.

If you are not new to this journey, I hope you reach out to someone who is.

If you are a professional supporting a family, you should know your presence here means more than could ever be conveyed in words.

If you are a family member or friend supporting a child, you should know your support and understanding is so needed and also so appreciated, as many, many, many people don’t understand how painful this can be.

Finally and most importantly, if you are a child with apraxia, stand up tall!! This is your day!!

We see you

We love you

We recognize all the hard work you put in every day, and we want to honor you!!!!

So let’s get started!

September 25, 2016