Category: apraxia blog

Before Ronda’s last fight, I tried to rally our apraxia community to participate in a hashtag campaign showing our suport.  You can find the post here:

Why I fight: Inspiration from Ronda Rousey

I have actually had that post hidden until tonight since at that time, Ronda had yet to say she had apraxia and I was getting a lot of backlash from people who didn’t really seem to see my vision.

Ronda has another fight coming up in November, and I just think it’s cool that we can all rally together and support her.  This may sound weird, but to me, watching Ronda beat her opponent is like watching her beat apraxia personified.

Apparently Ronda herself has received some backlash for fighting; and she attempted to explain herself…explain why she fights, in an article she wrote for the Herald Sun.

To me fighting is not an exhibition of brutality or a glorification of violence.
Fighting is a metaphor for life.
Everyone you meet every day is fighting for something, but life gets complicated and what you’re fighting for sometimes isn’t very clear.
But an actual fight is black and white, a relief from all the grays in the not so literal ones we’re all engaged in.

 

I don’t know what you think about when you read that, but I think about my life, and Ashlynn’s life, Cody’s life, Jace’s life, and how she is right.  Fighting is a metaphor for our life. If it weren’t, there wouldn’t be a popular meme out right now that everyone seems to relate to:

 

Just because we don’t know someone’s battles doesn’t mean they aren’t taking place.  They are.  Everyone is battling, fighting, or overcoming something.  I believe life is about learning, and to learn,to grow,we have to overcome a battle.

 

Some people are open with their battles, like Ronda.  In her book she is not shy about admitting her battles with: a speech impediment, bulimia, a relationship with her mom, her dad’s suicide, poverty, and failed relationships.  You know what though?  You know what makes her so inspirational?  It’s that she had those battles and overcame them all.  Only when people are willing to share there stories can we find our own hope and inspiration in them.  We relate to them and think, “I can do that too.  That ending can be MINE too.”

 

That’s why I’m so excited that THIS time, for this fight, I have more people on board supporting Ronda.  I want her to know that her support did not go unnoticed.  When you are part of a small community like apraxia, someone coming out on the big GMA stage is pretty incredible.  It’s also a time for all of us to come together and to cheer for hope.  To cheer for success.

 

Saturday November 14th is her next fight – this one is in the ring.

 

https://www.youtube.com/watch?v=2jSKMoXTvaQ

 

And you can bet I, along with others in the fight to Knock Out Apraxia, will be watching.

Want to be involved in spreading awareness about Apraxia through the upcoming #KnockOurApraxia campaign? Join the Facebook group…

Ronda Rousey: #KnockOutApraxia 

Oh and remember, “every revolution, starts with a fight.”

 

Original appeared 9/13/15

My husband’s sister was married last night.  Ashlynn was the flower girl and like any flower girl, she absolutely adored all the attention.  Ashlynn can speak now, and speak well where most people understand her.  If she’s at a loss for words, she’s smart and falls back onto one of her scripts, her most favorite being, “what are you doing?” She’s smart like that, because it takes the pressure off her and forces the other person to answer w
ith more than one word.

Before the dancing really got underway, Ashlynn held out her hands to me and asked me to dance. I was initially lost in thought because the song that was playing was Mumford and Sons “I will wait.”

I wrote about her and that song some time ago, and I was trying to remember how long ago it was:  I will wait

…but alas I was pulled out onto the floor and danced the rest of that song with her.  I’m so glad I did, because it was the last time that night she would want to dance with me again.

She lit up the floor imitating dance moves, spinning in the center of a group of women, and engaging anyone else she could.  When I asked her to dance later that night, she would move away from me, or flat out tell me no!

I told my husband my woes, and he said the most profound thing.

“Laura, you can’t be sad.  Look at her! It’s the first time she can fit in without help.”

And he was right!  Imitating dance moves like gangham style (if you don’t know this dance move google it) seems easy, but if you are a kid who has global apraxia, imitating any motor movement sequence is an accomplishment; and she did it, time, and time, and time again.  My nephew told me when she put on her dress she spun around “like a cupcake.”  It was such a great visual and I was sad I missed it, because I had yet to see Ashlynn do that.  I remember being a little girl and I loved to spin and have my dress poof out; but Ashlynn has never been able to get the motor plan down to spin fast enough….but she did tonight.

As I watched her smile shine brighter than the dance lights, I realized my husband was right.  It still made me sad, but children aren’t meant to hang onto to their mothers.  They are meant to fly away, or dance away as the case may be.

So I took the time to dance with my son.  I wanted to sit, tired from chasing him all night, but I realized again, so glaringly, that the days may be long, but the years are so short,  and so we danced.  We danced like no one was watching, and I smiled at him, and he smiled at me and I tried to get lost in the moment; and that moment was….amazing.

When the wedding was over, I still had Mumford and Sons ringing in my head.

“I will wait, I will wait for you.”
“I will wait, I will wait for you.”

Everything I have done has lead up to this moment.  Watching her when she was three years old struggle and almost fall to get on a short trampoline her classmates were jumping on, and then only being able to march on it broke my heart into tiny pieces.  Watching kids do a bear walk on their hands and feet while Ashlynn was in the back with a teacher holding her core just so she could feel what it would be like to be in that position…. How would she ever catch up?  The other three years old bouncing gregariously away and she could barely get on without falling.

I vowed to never give up.  I vowed to find away, I vowed to wait.  With tears in my eyes I would always walk by her side and wait for her………and tonight, the waiting was over.  It was here, now, in this room.  She looked like everyone else. She could fit in without me or Cody helping her, and as she danced I was so grateful she took time to dance that one song with me, the symbolism and history of it surely lost on her.  That damn song now.  How will I ever listen to it again and not cry?  A girl with no voice sang her first tune to it, and asked her mother for our first dance, and just like that, a painful chapter closes, but a new one starts.  Watching my little girl slip through my fingers will be something I’m sure I will feel many times.  I didn’t realize when I vowed to wait, I was really waiting for her to slip away and become more independent.  I didn’t quite realize I was waiting for her to not need me, and that feels weird now somehow.  I know this is how it should be though, so I’ll try and smile as she dances away.

 

I Will Wait Lyrics

Well I came home
Like a Stone
And I fell heavy into your arms
These days of dust
Which we’ve all known
Will blow away with the new sun

But I’ll kneel down
Wait for now
And I’ll kneel down
Know my ground

And I will wait, I will wait for you
And I will wait , I will wait for you

Original post appeared 10/5/2015

We all went to a pumpkin festival over the weekend.  My kids had a blast riding the wagon, picking out their pumpkins, drinking apple cider, and their favorite……dancing to the band.  It was  a bluegrass band with a standup bass, a fiddle, a guitar, and the occasional banjo.  My kids loved dancing and when songs came up they knew like “Skip to my Lou” and “Shoo Fly,” they were proudly and loudly singing along.

Ashlynn was wiggling her hips and dancing.  She would occasionally look back and I would pretend I had been clapping the entire time to encourage her.  She would turn back around to the band and continue her dancing.

An older woman and her friend sat down next to me.  She noticed right away Ashlynn was my daughter and asked if she was mine.  I told her she was.

A little while later, she commented, “I love how uninhibited she is.” I smiled and agreed.  This woman started clapping with me during one pause when Ashlynn looked back,  and she kept clapping.  I started clapping with her and continued, even if Ashlynn wasn’t looking back.  I love music too and it’s hard for me to sit still, so I was happy to have company.  Besides, I thought.  If I want Ashlynn to be confident and “dance like no one is looking” as they say, I need to model that myself.

More people started to clap.  Ashlynn kept looking back more now, but not to me.  This time she was enticing the crowd to clap along.  The more people clapped the more gleeful she became.  Her smile was radiant.

“She really stands out,”  the woman said, and for a minute my heart fell.  What does she mean??

“She’s a natural performer,” she continued.

I hope the look on my face was beaming with pride, but I doubt it was because what I was thinking is that all I have wanted is for people to believe in Ashlynn like I do, like her family does, and see what WE see.  This year has already been better with her school team, and of course her private SLP is awesome, but what I was thinking as this lady looked at me with her kind eyes, gentle smile, hands clapping, was “lady, you have NO idea where we have come from.”

We went back to looking at the kids and enjoying the music.  They were getting a lesson on how to play spoons.  You would gather two spoons the same size, turn them back to back, hold them a certain way and then slap them on your knee.  Ashlynn was the only child who picked it up and did it correctly.

“She’s got it!” exclaimed the woman.  “Look at her!”  She’s got it!

I looked on and saw Ashlynn had in fact mastered how to hold and play the spoons, but she couldn’t quite coordinate getting her leg up to slap them, so she took one hand and held up her leg while the other slapped the spoons.  My wonder was cut short as I looked over to see my son who had given up on the spoons zero in on the fiddle laying on the ground behind the band.

Uh oh

I jumped out of my seat and went weaving through the crowd but it was too late.  Jace looked like he had found the golden treasure, so you can imagine the reaction when I snatched it out of his hands and put it back.  Cody came in and swept him away to timeout.

I went back and sat down.

We listened to a few more songs before the band stopped for the day.  At the end, the woman offered me 25 dollars worth of tickets.

“Oh I can’t repay you, I have no cash,” I stammered.

“No dear, take them.  I bought too many and it was a joy watching your children,” and just like that she had moved on with her friend.

Her words were echoing in my head:

“It was a joy watching your children”

“She really stands out”

“I love how uninhibited she is”

I looked down at the tickets and felt tears in my eyes.  I had just written a post about being thrilled that Ashlynn was fitting in, but as a reader reminded me, perhaps I was looking at it wrong and I should remember Ashlynn was born to stand out.

For once, I felt happy that Ashlynn had “STOOD OUT,” so thank you random woman at the pumpkin festival.  Thank you for seeing Ashlynn for who she is, and for paying forward your kindness; and to Ashlynn, may you never lose your uninhibited joy.

Original post first appeared 10/1/15

In all the hype and excitement our community gained from learning Ronda Rousey had CAS, one very important piece was left out.  This piece, was her mother.

Ronda is a living, breathing, symbol of hope for our community.  She speaks beautifully in interviews without any hint (except maybe to a trained ear) of apraxia at all.  She has been in movies and on talk shows and we can all find hope that one day our child who struggles to speak can eventually gain the same fate.  That success IS waiting for us at the end of the tunnel.  It is important because it is empowering.

Unfortunately there is an ugly side I rarely talk about.  I don’t talk about it, because I hate that it is actually a truth.  The truth is, some children will not beat apraxia.  It is a very sad reality.  It is no joke to say apraxia is a beast.  It is NOT your typical later talker or speech delay.  It a hard-wired neurological problem that only has a chance of being remediated by intense and appropriate speech therapy, and this therapy needs to be EARLY when the brain has the most plasticity.

As much as I have been thrilled to see people find hope from Ronda, who they should also be looking at is her mom. Sacrifices were made.  HUGE sacrifices.  Ronda was growing up in California.  Professionals told her mother she would eventually speak, but AnnMaria‘s mommy gut was on high alert.  She just knew something was wrong.  She knew it so deeply she rejected all the assurances and moved her family from California to North Dakota.  She accepted a job at the University and as a deal, Ronda would receive intense and frequentspeech therapy.

When I read that, my ears perked up.  I mean, think about that for a minute.  You are living in your community.  You are comfortable, this is where you want to stay, but something is wrong with your child.  Ronda says in her book going from California to  North Dakota is not a typical American migration pattern.  I mean, really think about that! Despite professionals reassuring AnnMaria that Ronda would be fine, she took drastic measures and moved them to North Dakota.  (For the record, she is now back living in California).

That is the story I want people to understand.

AnnMaria commented on my blog post that she often wonders what would have happened had she not done that.  My response was that the heartbreaking truth is that we would not see the Ronda we see today.  She may have still been the world’s best MMA fighter, but there is very little doubt in my mind we would all see the speech she has that we see today.  That is the truth and reality of apraxia.  If it were not, I would not have been utterly devastated at Ashlynn’s dx.  If that were not the reality, I would not spend the hours I spend dedicated to apraxia awareness.  I tell people all the time I’m an SLP specializing now in the disorder and my daughter still sees a private SLP along with her school SLP.  This disorder is no joke.

I had my hair done this summer and the hairdresser was new.  As we were getting to know each other, she asked me what I do.  I told her I was an SLP specializing in a severe speech disorder called apraxia.  She nonchalantly said her cousin had that.  My eyebrows raised a little, but then she started describing her cousin’s speech was that of about a toddler.  She said though her cousin is really smart, she speaks like a three year old.  I asked how old she was and she replied, “sixteen.”

My stomach immediately turned into knots.  Honestly, I could have cried.  I HATE that that is the reality of apraxia. As I learned more, her parents had only ever had school therapy.  School therapy is not bad, but let me remind you all that I am an SLP and my daughter still sees a private SLP!!  I can‘t stress this enough.  Apraxia may be a war you didn’t sign up for, but you have been drafted and now you need to fight.  If you want to win, if you want your child to win, you need to come out with every gun blazing and with every soldier at your disposal.

That’s not the only sacrifice AnnMaria made though.  Ronda has two older, very verbal, sisters.  When she was in North Dakota, her dad pursued a job opportunity a couple hours away.  The SLP advised that Ronda go with him. Being away from her sister’s would force Ronda to talk more.  The verdict?  Ronda went with her dad.

Again…….just imagine the sacrifice.  Sending your baby away because in your heart you know it will help her speak.

In one interview I was watching, AnnMaria was talking about how Ronda would beg her not to do interviews.  In fact, she said in early interviews Ronda’s sister would be hiding behind her chair to help her.  How many of us want to save our children pain by sheltering them?  It’s natural, but it’s not what needs to be done if you want your child to overcome apraxia. AnnMaria pushed Ronda to do those interviews.  How many of us would do the same?

The message of this post is one I will not likely address for some time, again because I want my blog to be mostly about hope and not about dread.  However, I want to make sure that just because we now know a person who grew up and overcame apraxia, we don’t become apathetic and reassured that our child will be the same some day.  We can have hope, but it is necessary to also realize the decisions, sacrifices, and drastic measures that were made by her mother to ensure Ronda was the Ronda we all see today.

This originally appeared 9/28/15

This last summer has been a whirlwind for me.  Starting with meeting Ronda Rousey the end of May, my story going viral two months later, and then ending up on GMA, a national platform in which to spread apraxia awareness.  Though there were many surprises, the biggest and most amazing of all was a personalized video to me and Ashlynn from Ronda herself.  You can watch it by clicking on the link below.

https://www.youtube.com/watch?v=kH6eV56oGg0

When I first met Ronda, I had no idea how famous she was.  After I met Ronda, I have been known to tell people that I don’t think I have quite followed a celebrity more thoroughly now.  I have never been star struck, but when I saw that video of her to me and Ashlynn I could only look on incredulous that this busy, famous person, took time out of their schedule for us.  I have watched that video a dozen (hundred) times.  I have analyzed everything.  I’m so amazed at how beautifully she speaks knowing her struggle.  I’m still left to wonder about her last words:

“I know our paths will cross again someday at some point, and I can’t wait to see you again.”

What does that mean?  Oh Laura, you could say.  She was just being polite.  She was just talking, of course she didn’t mean it.  It was just something to say.

I maybe believed that for less than a second.  You see, I think I mentioned I have never so thoroughly followed a celebrity before, and because I have been I know that Ronda doesn’t say what she doesn’t mean.  That’s why she gets so much crap in the media.  She says what she means.  I love that.  She worked so hard to say what she wanted to say, screw censors, or political correctness.  Ronda, keep saying what you want to say.

She also has said that if she endorses a product you know she really uses it, because if she says it, she means it.

She has ALSO said that she is a woman of her word.  She has proved it time and time again in various events in her life if you follow her, but she also proved it to me.  Not that she needed to.  I knew what she promised and she delivered that night.  She posted that brochure probably upon stepping foot back into her hotel room.

She did so much more than she promised, interviewing then on GMA specifically about apraxia, spreading awareness once again to millions of people!

I have to admit that moment was pretty sweet.  I had quite a few people doubt my story, or just in general be doubters that she had apraxia and that she didn’t want anything to do with awareness (even though she posted that brochure on two of her social media accounts).  That GMA piece shut everyone up, and it was so freaking awesome. For a brief moment, I felt like Ronda must in the octagon when she defeats some loud mouthed, trash talking hater. It was so sweet I became a little sassy myself and posted this picture on my fb page:

I didn’t have much time to reflect on that moment.  That day.  I was blasted with emails and calls afterward and I wanted to answer them. What is the point of spreading apraxia awareness if then you aren’t willing to help or at least reply to people you spread it to?

It took me awhile, especially since I went back to work and then see private clients at night.  I was also planning the Denver Walk for Apraxia which brought out 380 people!

The weather has still been nice so we were ALSO hanging onto every last minute of summer on the weekends that found us camping and at the lake.

Needless to say, I’ve been so crazy busy.  Now though, the dust has settled.  The emails have quieted down, the phone calls have stopped.  I can write again!  I can reflect again!  To put it simply, I can be ME again.

Which leads me back to that video and Ronda’s promise.  When I gave Ronda that brochure, I had tucked the Denver walk flyer in it.  It’s crazy I know, but part of me was convinced she was going to come to the walk after she sent me that video.  I didn’t want to write or blog about it hoping I wouldn’t jinx it.  Crazy right?  Hey!  Don’t judge!  When you get on GMA you start to think anything is possible! haha

Anyway, you might be shocked to discover…….she didn’t come.

There was a day I wrote I had her promise she would mention apraxia in her interviews ringing in my ears and running through my head.  Though it was only a two short months later she did so on GMA, those two months felt like eternity! The point is though, she DID.

Now I have a new promise, a promise that she knows our paths will cross again.  I know I know.  You are thinking, “boy lady, you are seriously delusional” but I’m telling you people, I follow Ronda and she always keeps her promises!

Anyway, now I wait.  Or do I? I’m not one to wait for things to happen to me and Ronda posted a great quote one day on her IG: