Category: Apraxia

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:

Original post date appeared 9/7/15

Starting this blog, I had intended to spread awareness in my small part of the world and hopefully help some others along the way.  Life is funny though, because unexpectedly, the comments from others in response to my blog ended up giving hope back to me.  

Today was one of those days.  Started out normal.  Hectic morning, trying to pack two backpacks, a diaper bag, two lunches, my briefcase, and get us all out the door with clothes on our bodies and shoes on our feet.  It sounds easy people, but with a 5 and 3 year old, it is ANYTHING but….easy.

Sigh

Anyway, I think I rolled out of here 10 minutes late.  I dropped the kids off and wheeled into the parking lot to work.  I can’t really check facebook when I’m doing therapy, so I logged in right before stepping out of the car. That’s when I discovered a message.  I hope he doesn’t mind me sharing it so I’ll keep it anonymous, but it brought tears to my eyes.  Reading it, I felt like I was nearing 50, the time I’ll be when Ashlynn is his age.  I truly felt like God had sent a message to me, a glimpse into my life just 15 years from now, and I instantly felt a calmness wash over me.

“Hello, I’m not quite sure how to say this I’m not very good at messages, In fact I never do this. Let’s start this off by saying I’m a 21 year old paramedic from canada. I also have global speech apraxia. I also just read all of your blogs on your daughter and it brought tears to my eyes, it reminded me exactly of when I was young. It also reminded me how I couldn’t be who I am right now without my mommy. I’m telling you this mainly because I want you to know that the role you’re playing in your daughters speech pathology is unmeasurable. I can not thank my mother enough. I know she must be tired she took me to speech pathology for years. I’m also saying this because you need to know that your daughter will never forget how bit a part you’re playing, I know I never do. I also want to thank you. For what ever reason I always felt so alone in the world like I was the only one struggling so hard with speech. I remember my first girlfriends mom didn’t like me because “I talk like a retard”. I always felt so alienated. Your blog just gave me some peice of mind into knowing that I’m not alone. I know your daughter is much younger than me but I went though her struggles and it’s going to be okay. So thank you for that. I’m rambling now I’m not even sure if you’ll see this. Oh well I’d you have any questions Please feel free to contact me here on Facebook I’ll answer anything. Sorry for the long message I really needed to get this out. Thank you.”

I’m not really a cryer.  People couldn’t believe I didn’t burst into tears seeing Ronda Rousey’s personal message to me.  I don’t know.  Crying in public isn’t me.  I cry, but to myself.  I prefer it that way.

As I looked up from my phone, I realized I had to wipe some…. tears?  What was this?

What a gift!  How incredible that someone who said he never writes, felt compelled to write; and in doing so, allowed me, if even for a moment, to forget the attention issues, the writing issues, the knowing her lunch number issues, and oh my God are we ever going to make it through Kindergarten issues`……

and smile…and cry…..because he gave me hope that Ashlynn will feel and maybe say those very things someday.  I remember the day she was diagnosed my only wish was that I wouldn’t let her down,

…and in those brief seconds as I read his words, I got to feel Ashlynn was him and I was his mom.  We had made it out of the woods and I had in fact, not let her down.

I ran across this meme looking for a graphic for this post and found this. When I started blogging I desperately wanted hope. I wanted to know the future would be okay. I am determined that the final blogpost will be all those things and more,  but today I could feel, if just for a moment, my dreams fully realized.

So tomorrow is the culmination of my experience and chance meeting with Ronda Rousey.  I honestly cannot believe my one encounter and subsequent blog post went viral and has now landed us on the national stage that is Good Morning America.

When Ashlynn was dx, I remember being grief stricken that although I had tried to work with her for a year, she still remained largely silent.  I remember thinking what a failure I was.  I remember thinking how unlucky she was to have me for a mom.  What was the point in having a mom who was an SLP if she couldn’t even help you talk?

After my pity party and lots and lots of tears, I resolved I would become an expert in the disorder.  How?  No idea.  No time to think about that.  Just a goal, and me working toward it would be my mission.

I couldn’t help but worry that I would fail.  I would fail in my mission, but worse yet, I would then fail Ashlynn.

I didn’t cry for this interview, but one phrase that will make me tear up every time is when I say, “I didn’t want to fail her (Ashlynn).”  How would I live with myself?  An SLP that couldn’t help their child talk?  Disgraceful. This is how I felt.

My husband showed me an inspirational video the other day talking about a boxer who beat Mike Tyson.  He got knocked out in the first round but still managed to come back and knock out Tyson to win the match.  The speaker said his “why” was bigger and stronger than his knockdown.  According to the video, days before the fight his mother was on TV telling people he would beat Mike Tyson, but she died before she ever was able to see it.  His why (proving his mother right) was greater than being knocked out by Mike Tyson.

If you read Ronda’s book, she says her dad always told her she would be great.  She would be President or she would win the Olympics.  He died when she was a child, and he was never able to see her.  I saw in an interview her tearing up just hoping she made him proud.  That she wonders if she makes him proud every time she steps in to the octagon.  It comes then as no surprise why she is undefeated.  Her why, it would seem, is greater than any knockdown punch life had or has thrown at her.  These knockdown punches including speech; but also her dad’s death, her struggle with bulimia, and living out of her car.

That brings me back to tomorrow though.  How the heck did I make it on GMA?  As I reflect, I think I have finally realized my why was greater than that blow that was the apraxia diagnosis.  Fearing I would disappoint Ashlynn I have been relentless in my fight to beat it for her, but then to help all the other children who come after.  I don’t want anyone to feel the way I felt that day.  With more awareness, maybe the blow could be a little less forceful.

One surprising thing to hear throughout this entire journey is that people think I’m brave.  I don’t feel brave at all.  I was so scared I wouldn’t be able to help Ashlynn.  If I didn’t help her, I wasn’t sure I would have ever been able to live with myself.  So that’s why every time I felt scared, I thought of her and all the other kids I treat who I have to encourage to be brave.  I make them in every speech session do the one thing that is the hardest for them.  I watch them fight, struggle, cry and sometimes fail so many times before they are able to achieve success, and this success may just be onesound, one syllable, one word.

It would seem very hypocritical of me then to turn away when I had the opportunity to educate so many people.  Oh I wanted to.  I think I spent the day hiding in my office the day my post hit USA today.  I felt so overexposed.  I couldn’t stay in that spot long though, because that is exactly how our kids with apraxia feel when they have to talk.

Anxious

Overexposed

Scared

Yet they wake up the next day with a smile, ready to do it all again.

It’s hard to put myself out there and be open to criticism, but then I think,

“This is exactly what kids with apraxia do every day.”

So tomorrow there my story will be.  On a national stage; and though it’s scary, I have to look no further than in the eyes of my daughter and remember my why.

Original appeared on 10/12/15

Oh apraxia.  Oh global apraxia.  I have said before if someone wanted to do a checklist on paper I could make a strong case for my daughter having autism.  She doesn’t of course, but one item evaluators love is “restricted interests” or “perseverative behaviors.”  If your child is demonstrating one of these then someone somewhere will start to suspect autism.  Luckily for my daughter, she has always been an extrovert and socially motivated.  One meeting with her and any thought of autism is extinguished; however, it always makes me wonder when so many parents say their child has apraxia AND autism.  It always makes me pause and wonder how many parents of those kids have global apraxia.  You see, when a child can’t speak, play skills and social language skills will be delayed resulting in what looks like some sort of social impairment or delay.  When a child has additional problems with fine or gross motor skills, they can’t even play with toys appropriately because they simply can’t work them like their typical peers.  If you add that all together you get get the following formula:

Lack of language and speech + lack of motor skills = restricted interests and/or perseverative behaviors.

Oh and I didn’t add in a “shy” or “introverted” child.  Well, they would probably be misdx too.  Anyway, that’s really an entirely different post.

Ashlynn when she finally started to speak somewhat, did ask me for a “baby” for Christmas.  I’m not sure if this was her own doing, or because she had been taught the word baby in therapy and she had just had a baby brother.  Either way, Santa bought her a baby.  She was excited until she realized she couldn’t dress it or undress it.  The motor skills just weren’t there and the baby went to the wayside.  It was heartbreaking to see her excitement and then disappointment.  Since that time, all she’s ever asked for are “cards.”  I’m talking about playing cards, flash cards, or speech cards.  Cards.  This is what she has wanted for her Birthday or for Christmas.  Cards.

How sad is that?

She knows cards.  She understands cards.  She’s looked at cards to help her talk since she was 3.  I have mentioned before Ashlynn is the toughest and hardest working girl I know.  That girl always wants to work, and with cards, she knows she can learn.  She takes her cards to church, pulls them in a wagon, swings them, colors on them, collects them, and sleeps with them.  Cards are literally ALL over our house people. Last year, her dad and I didn’t know what to get her.  All she kept asking for was “cards.”  We bought her a book and baseball card pages to collect them and stickers with which to decorate her book.  She loved it.  Cards.  That was her present.  My husband felt awful buying that gift.  The pain last year in his face was tangible.  I told him, “Cody, it’s what she wants.  Just buy her cards.”  He bought her the most expensive and extravagant book and cards he could find, but I could tell, he still felt bad.

This year, she turns six.  He asked her one day what she wanted.  The first words out of her mouth were “cards.”  The second:

“A kitty.”

We only have a dog.  My husband is not crazy about cats at all.  I had a cat when he met me.  The first cat I ever owned because my mom wasn’t crazy about cats either so I bought one when I moved out.  He tolerated that cat at best, and unfortunately my Rajah died at only 5 years old from kidney failure.  He loved me so much we got a new cat, but the cat was crazy. Literally. We lived in a third story apartment and the cat kept jumping off the balcony.   I have NO idea how it survived twice, but the third time it never came back.  We never found it and we never got another cat.  That was right before Ashlynn was born.  Cody swore off any cats again.  He flat out told me, no more cats.  I didn’t argue too much, because no one it would seem, could replace my Rajah anyway.

Well…..until Ashlynn said “kitty.”

Cody struggled for three weeks.  For some reason, when I asked Ashlynn what she wanted, I still only got “cards.”  When Cody asked her, he got “kitty.”

Convincing me was an easy obstacle, so last night, a little over a week before Ashlynn’s sixth birthday, Cody posted this picture to his fb account with the caption:

When your daughter asks for a kitty for her birthday, and she has never asked for anything before. You end up with a kitty. Say hello to Rousey the cat.

Ashlynn’s smile says it all.

Oh and yes.  Our cat’s name is Rousey.  Judging from the pet store lady’s tears when we said we would adopt her, we discovered we saved her from imminent death…so yeah…even though Rousey’s sweet….she’s a fighter who beats the odds too; so we couldn’t think of a better name.