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  • 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.

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  • 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

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    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.

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    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.

  • …and the haters gonna hate

    At the risk of turning off people with another Ronda Rousey post, I debated not writing this.  However, I’m a writer, and in times of thought and reflection, a writer must write.

    I was more than shocked to realize not everyone shared my same vision and hope from my Ronda Rousey story.  I guess I was naive.  Either way, I started to feel down but then I realized something. I have nothing to prove to anyone, and trying to prove it doesn’t matter anyway.

    They might not share my vision or opinion, because of the very fact it wasn’t their vision, it was mine.  It wasn’t their experience, it was my experience.  I can’t care what haters have to say.  I don’t have time to care what they say because I’m too busy chasing my goal and my dream. Let them doubt.  Let them hate.  Let them bash.

    If you need me you’ll find me fighting for apraxia.  You’ll find me fighting for my daughter and for my clients.  You’ll find me doing what I can to raise awareness, to give my clients hope, to give my client’s parents hope.

    You’ll find me organizing a walk.  You’ll find me reading recent research, planning my lessons, making my materials or playing with my kids.   You’re not going to find me fighting you on whether or not you should like Ronda Rousey.  Why you would not gain hope from listening to a woman who beat apraxia speak with no hint of a speech disorder is beyond me.  Why you wouldn’t want to show your kids that they can not only beat apraxia but they can go on to do anything they want to do is beyond me.   I can’t dwell on other people’s motives or thinking.

    As far as Ronda having yet to respond, well, I’m not worried in the least.  I know what she promised, and I know she’s not impulsive.  In a quote the other day she said,

    “I’m a patient girl,” Rousey said. “I wanted to respond at the most appropriate time where I thought I could make the biggest impression…” when talking about her quip to Floyd Mayweather. (In case your wondering, she waited an entire YEAR).

    There is very little doubt in my mind that is why Ronda has yet to respond.  Aside from being insanely busy, she’s uber famous.  People are so entitled.  What, they think they sent out a tweet and she should respond immediately and if she doesn’t that means she doesn’t care?  Ronda herself trained in a gym for 8 months before the trainer finally agreed to give her a chance to even train for the UFC.  Someone sends out a tweet, waits 24 hours, and because she didn’t respond she has no interest in addressing it?  Who are you and what makes you think you’re so damn important?

    Ronda grew up during a time where apraxia was not even the term they really used for apraxia.  It was called a number of different things and some people believed it was a myth!  It has only been since 2007 since it was OFFICIALLY acknowledged.  Maybe she wanted to do her homework a little.  She looked me straight in the eye and made a concerted effort to promise me she would mention it. Immediately afterward she tweeted the brochure spreading awareness to millions.  MILLIONS.

    How is that not amazing?

    In the meantime, I’ll just be singing Taylor Swift “Haters gonna hate hate hate hate hate….”

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  • 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

     

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

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

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

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

    EVER.

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

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

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

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

    I saw the light go out in her eyes.

    I wrote on my fb page I still can’t read it, and I can’t.  I know what it says though, and it’s the scariest post I have ever written.  Suffice it to say she almost drowned in swim lessons, and her instructor was able to somehow coax her back in the water.  Had he not done that, I am certain she would never have attempted to swim again.  However, he did, and the story played out much differently.  He was a head guard, and he also offered private swim lessons, so we put A in private swim throughout the entirety of last year.  10994220_10204378660359186_5760258971163319088_n

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

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

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

    “Why?” she asked.

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

    “No,” she admitted.

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

    Silence

    “Okay A?”

    “Okay, mama.  I’ll try.”

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

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

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

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

    Josh lets go…

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

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

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

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

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

    “Mama!  I float by myself!”

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

    “Thank you mommy, ” said A.

    “For what?” I inquired.

    “For swimming” she said sincerely.

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

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

    As I said before, global apraxia is a hell of a disorder, but when you beat it, there is nothing in the world better.11041099_446265575555109_8517817855255507803_n

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

    Last fall, I attended the 2owen014 Denver Walk for Apraxia with a client and his family. In my private practice, I have the privilege of working with many children with CAS and appreciate deeply the work of the CASANA community. Walks such as this, are a beneficial experience to share as a Speech professional with the community of families connected to the cause.

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

    These charity walks draw in hundreds of cheerful, open-hearted people to a festive day in honor of families living owen 2with unique circumstances. To these families, who can come to feel isolated, such an event is a tangible manifestation of how supportive and optimistic the world can be. It is an opportunity for children, like those we see on our case-loads, to have fun amidst a friendly gathering in celebration of those on a common journey. Every day, parents strive to balance their child’s intense therapy schedule, frustrating social interactions, sibling relationships, and much more. But, at the event, I delighted in seeing parents bond as peers over their shared experiences and mission.

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

     

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