SLP Mommy of Apraxia

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Her fight, our fight: The day we met Ronda Rousey

It started with an intriguing title: Ronda Rousey: The World’s Most Dangerous Woman, and then a picture of a James Bond beauty type.

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Now, I normally wouldn’t click on stuff like this, but today I had a day off, the kids weren’t fighting, and I thought, okay…sure. Let’s see. A beautiful James Bond girl is the most dangerous woman in the world? Sure. Let’s read about this.

And then I read this

“In her first six years, nobody knew whether she’d ever speak an intelligent sentence, such were the after effects of being born with an umbilical cord wrapped around her neck. It could be that her gibberish and mumblings were signs of brain damage. No one knew, and her parents — Ron, an aerospace-industry executive, and De Mars, an educational psychologist and statistician — moved when she was three from Riverside, California, to Jamestown, North Dakota, in part to be near the Minot State University speech therapists, who set about bringing her vocal cords to their senses. It wasn’t easy, and it took time. And it was especially frustrating for Ronda given how advanced her sisters were. “I’m dumb, Mom,” she once said. “Maria and Jennifer have the words. I don’t have the words.” “No, you’re not, you’re very smart,” her mother told her. ”

And then I was hooked. I started googling her name. I read every interview. In almost every interview she made mention of her “speech impediment.” Each time she talked about it, the more my mind thought, “this is apraxia.”

I threw up the question to the apraxia kids facebook group. Yes, people had heard of her, but no, they never heard she had a speech impediment and they sure didn’t think she had apraxia. Hmm.

Did I mention I had the day off and my kids were being good?

So, I started to research some more. In one interview she said her dad called her “sleeper.” She was just waiting to bloom. He told her things like she was going to be an Olympic gold champion, or the president of the United States. He died tragically when she was young and he never lived to see her accomplishments. My heart ached for them.

In another interview they said one time she said a word that was unintelligible, but it was what she wanted for her birthday. Her dad took her to the toy store and made the store clerk take them to every item until they discovered her jumbled words were trying to say Incredible Hulk. Man, how many of us have been there? Damn birthdays. When your kid can finally tell you what they want, you would sell your house to get it and you say a prayer of thanks they could at least try and say something and tell us what they want. She HAS to have apraxia. I have to at least ask.

One problem. Ronda Rousey is incredibly famous. What could I even write that her PR people would read and then pass on to her? Could I try her fb page? Twitter? I settled on the “contact me” form on her website. I started writing to her PR people, but it emphatically turned into me writing to her. I didn’t hold out much hope, but hey, might as well put it out there. Apraxia needs a face….and what better face then this badass female! She’s smart, talented, driven, resilient…man. Doesn’t she sound like our kids with APRAXIA?

Before I closed my computer one last thing on her website caught my eye. She wrote a book. Hmm. Maybe she writes more about her speech impediment in her book?

I saw that she was going to have a Colorado book signing.
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Interesting. I clicked on it.

May 29th 2015

Wait….that’s…..today!? Oh my gosh. She is in Colorado!! She is in Denver tonight!

Insert internal struggle.

I have to go! This is amazing. I have to ask her. I can ask her in person! Laura, are you crazy? A has speech therapy and swimming tonight. You can’t go down there. Plus, are there even any tickets left? It’s the day of. Well, I could check. I could check….and then if there aren’t any tickets left I can wipe my hands of it and know it wasn’t meant to be.

So I called Tattered Cover. There are tickets left, but they are almost gone. I have to buy the book to get a ticket. Do I have to come in and buy the book? Oh, I can order it over the phone and pick it up at the book signing with my ticket? Do I want one? Um…um….this is crazy right? I’m crazy. Oh what the hell. Yes. I’ll buy one. Yes thank you. I’m number 422 out of an allotted 500.

What did I just do? I don’t watch MMA. Just this morning I didn’t even know who Ronda Rousey was and now I have bought her book and a ticket to go to her book signing on a night we are slammed with appointments. My husband is going to think I lost my mind.

Okay, I won’t tell anyone. It’s only crazy if she doesn’t have apraxia right?

I feed my kids lunch.

Who am I kidding? I can’t keep a secret. I text two of my apraxia mommy friends.

“Do you believe that coincidences are not really coincidences?” and I tell them the story. The consensus?

“Go”

I tell my daughter’s SLP…her response?

“You have to go!” and “You should bring your walk flyer!”

Yep. Definitely going. I packed a CASANA apraxia brochure and inserted my walk poster and off we went.

A was STOKED. She LOVES books. She could not believe this big book was for her. She held it like a prize and she would NOT let me hold it.

We stood in line and people thought she was adorable. Ronda’s youngest fan. Well…maybe….if Ronda has apraxia this moment is epic. I started to get nervous. What am I doing here? I dragged my 5 year old baby to a book signing on a mother’s intuition. Oh well. If nothing else, this woman is pretty kick ass. She’s not famous for her good looks (even though she’s beautiful), she’s not famous for being a reality star, she’s famous for being freaking talented and smart. I started liking her in spite of anything.

Finally it was our turn. As we got closer, her bodyguards were crabby and everyone on her team seemed tired. They were literally pushing people after their book was signed so they wouldn’t take up more time for selfies or whatever. She wasn’t personalizing books. In fact, you couldn’t even hand her your book. They handed it to her for you. Sigh. I took out my hidden apraxia brochure.

Damn.

Oh well, maybe we’ll still be able to talk. Those body guards though. Gulp

“Okay sweetie, your turn.”

I sent A up to the counter by herself because I read in one interview that Ronda has a soft spot for kids who seem to have the same speech disorder she did, so she really tries to take time for them. This was no exception.

A walks shyly up to the counter.

“What’s your name?” Ronda asked.

A answered but she couldn’t understand so she leaned over and asked again. I only got this one picture

before I went over to clarify.

Ronda started signing her book. I said quickly, “A has a neurological speech disorder like you did and we are inspired by you because you overcame that and so much more.”

Almost on auto-pilot Ronda responded, “Yep, I had to overcome a lot to get here.”

I’m crazy nervous now. I have to ask her like ASAP. Luckily she’s taking a long time to sign the book. Laura say it!!

“Did you have apraxia?”

Ronda stops signing dead in her tracks and looks me in the eye and says, “What did you just say?”

“uh uh apraxia? dyspraxia? Was that your speech impediment?”

She looks incredulous and repeats “apraxia, yes, this is what they think I had.”

I smiled. I knew it. Un-freaking believable. I look over at the body guards. What the heck. I throw the CASANA brochure on the counter. They move in, but she motions them to stop. I say,

“This is information on apraxia. If you really did have it, will you say that in your interviews instead of speech impediment. It would mean so much to our kids who are struggling with it.”

She again looked at the brochure before looking back up at me and said, “I will. I really will.”

She seemed sincere. I instantly believed she would. I have A give her a hug and try to push her along (bodyguards are watching) and she says,

“You know, my mom is a PhD psychologist, and SHE had never heard of it. She took me to the Universities and many of them had never heard of it.”

“Yes!” I replied. “Yes! It’s still not well known or understood.”

She starts to get really worked up now. Emotions start spilling out of her. I read in an interview people think she’s so tough, but really she wears her heart on her sleeve and she was, right then, in that moment.

“They wanted to put me in a special classroom away from my friends. They thought I was stupid!! But by 4th grade I was top of my class in algebra, and by highschool I tested gifted.”

“Yes!” I again replied. “Yes, these are our kids.”

She looked back down at the brochure before looking up again and said, “I will. I really will.”

A and I ran out of there. Before we left I pointed at Ronda and said “Look!! She has apraxia,” and then I pointed to a line of almost 100 people who were still waiting and said, “and all these people want her autograph!!”

My daughter smiled. We ran out into the rain laughing.

“You’re going to be famous!” I said, and we laughed.

It was very late by this point and we still had a 30 minute drive home. I stopped by my parents house to tell them the story. They couldn’t believe it!

I finally got home and ate dinner while my husband put A to bed. I fired up my computer to start writing this blog post, but checked fb. Just for the heck of it I went to Ronda’s fb page to like it, and that’s when I saw this:

She reposted the brochure I gave her!! She must have done that first thing upon completing the book signing!! She IS one of our kids! So freaking awesome!!

Even if she doesn’t do anything else, even if she doesn’t say she has apraxia (but I think she will), A and I will always have that moment…..that moment when we met a true fighter who beat apraxia and so much more, just like A will.

We will always have that book confirming what I have hoped all along:

“I never would have been able to do any of those things without hope. The kind of hope I’m talking about is the belief that something good will come. That everything you’re going through and everything you’ve gone through will be worth the struggles and frustrations. The kind of hope I’m talking about is a deep belief that the world can be changed, that the impossible is possible.” – Ronda Rousey

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June 1, 2015
Speaking in scripts with a story in her eyes

Thanks to funding from Small Steps, I have Ashlynn back in therapy with her private SLP, who is also my mentor and now friend. The other night she was updating me on her progress and what happened in the session. I take my daughter to her house, so occasionally her husband or dogs may walk by and apparently distract Ashlynn. She was remarking on Ashlynn’s ability to hold a pretty good conversation. After she went through a communication exchange Ashlynn had with her husband, I commented that everything Ashlynn said was a script she had been taught. To a new communication partner, she sounds very adept, but to those who know her, the script rarely changes.

I went onto say, that though Ashlynn speaks in sentences now, her speech is still predominantly in scripts because crippling word finding deficits and motor planning continue to impede her ability to effectively offer up new and novel information.

I wrote the other day that I wanted a professional to know Ashlynn like I do, and I know my mentor is the one. I know because she said this,

“Yes, it is remarkable really, and not something I think many people, including other SLP’s would understand had they not witnessed her development themselves. To think Ashynn has been taught everything she says is almost unbelievable even to me.”

Yes! Yes! She gets it!! She sees how remarkable Ashlynn is!! Ashlynn does put some novel things together, but they are usually already scripted phrases she has learned and then she may combine them with another scripted phrase.

SLP’s usually talk about a “language explosion” that most kids have. Some kids have it late, thus needing speech, but most all will usually experience it. I remarked that Ashlynn has never had a language explosion. Never. Everything she has said she has worked for.

I responded that Ashlynn has always learned, from a young age, to grab onto the scripts that would get her the most bang for her buck socially. By 1 her first word was “hi” and she could use it to grab anyone’s attention. By 3 I taught her to say “watcha doin?” which has since been refined but to which she still uses and has actually overgeneralized now to the point that she gets stuck on it and will say it over and over just to keep up the conversation. In her last year of preschool, the social worker really worked with her to move from parallel play into interactive play by teaching her to say “you want to play with me?” and “do you want to be my friend?” Once Ashlynn picked this up she was off and running and uses it now frequently in a variety of settings.

My mentor went onto say that she had asked her about a recent camping trip we had just come back from. When she mentioned camping, she said Ashlynn’s eyes lit up and danced. She said she wished she could have been able to get inside her head because though she could see Ashlynn’s eyes dance with stories, Ashlynn took a lot of time before settling on “I ride my bike.”

“Another script,” I said.

That’s when the SLP said, “Well, and doesn’t that speak to her cognitive ability? Being able to pull out and get the scripts that get her the most bang for buck and her ability to look like an effective communicator to a new partner despite only having access to pre-existing scripts in her motor plan….that is really quite remarkable.”

I smiled. Yes! Finally! Yes it IS remarkable. It DOES speak to her cognitive ability but also her amazing resilience, ingenuity, and motivation.

One day I know her word finding difficulties will improve as well. We work on naming and word recall daily. However on days when she was with her grandma, she will still call me “grandma….mommy” and on days she has been with me she will call her grandma “mommy…grandma.” She is learning to self-monitor and that is good, though that also speaks to the cognitive ability you MUST have to do these tasks. Can you imagine?

First she has to conceptualize the thought, then she has to have the speech motor plan for it but also the word finding. If she wants to speak on auto-pilot (like we all do taking it for granted), she runs the risk of saying the wrong thing, like calling me grandma even though she knows I’m mommy……or saying it incorrectly (speech sound production), so then she has to monitor her speech and then correct it, but remember, correcting mean having to plan, program, and then re-try accurate execution of what you wanted to say.

How exhausting is that? Is it no wonder our kids get frustrated? Tired? Discouraged? It’s no wonder to me; however, what is even more of a wonder to me is Ashlynn never gets frustrated or discouraged. She’ll laugh. She’ll try again. She NEVER gives up. She is insanely motivated, and for that, I am thankful. So thankful. I pray she never loses that. I pray she will be the communicator she desires to be, the friend she desires to be, and whatever person she desires to be. I pray I’m doing enough, but for now, I’ll just say a prayer of thanks for the hope that another professional finally sees a glimmer of what I see.

May 28, 2015
A confession, and a hope for A

A is about to graduate from preschool tomorrow and embark on her Kindergarten experience. She is ready and excited. Her preschool teacher this year is retiring, and what a teacher she was! Ashlynn mimicked and learned SO much from her. I can’t even begin to start with all the things Ashlynn has learned. This woman set everything to a tune paired with some large gross motor movements, and the combination was pure gold for A. I hear what she has learned every night before bed, during her pretend play of being the “teacher,” and with her songs she will randomly bust out when in a good mood.

Great right?

Well, yes of course….and well no, not really. No? Why you ask? Well, I don’t believe this teacher ever really believed in A. It’s a sad and maybe terrible thing to say. I know the teacher liked her. In fact, she called her dolly. It’s just that, there was maybe only one time in all the meetings and conferences that the teacher knew what A could really do, and when I would tell her of all the amazing things Ashlynn learned, she would just smile a half smile. I thought she would be so proud. I always waited for her to tell me that, but it never came. Sigh. Oh well.

In fact, though A is well liked, there was never any teacher who exclaimed how proud they were of her. Who noticed how hard she works. Tirelessly really. Truly. She is always begging for me to do homework. She is always going over what she learned, or practicing flash cards, or hand writing. It’s really sad to me that no one sees that but me. In fact, it felt like they were against her when they were trying to force cognitive testing on me…as though giving her a number would make me see what they see, or rather, didn’t see.

I’m part of a lot of groups now for apraxia. Basically, my facebook newsfeed is apraxia news 24/7. I have friends I never would have had if not for apraxia. Some are experiencing highs, some lows, all riding the roller coaster. I have a few who are having incredible highs and I am SO happy for them. THRILLED! TRULY. At the same time, I can’t help but feel jealous, sad, but also hopeful that A will meet that right professional who will change her life, and to be honest….I really don’t want that professional to continue to be me. I really think next year we will have them. The team she is going to is MY special education team that I actually work with at my job, and ALL the professionals care about their kids, know their kids, fight for their kids. I’m pretty sure A is going to have a dream team next year, but of course, one can never be sure.

Throughout all this I keep being reminded of something I said earlier in my career. It’s been haunting me now, and I really hesitate to confess it. However, that’s never stopped me before, so here goes. I had been at the job for awhile when I was paired with an awesome SPED teacher. She was young, enthusiastic and passionate (much like me). We were both problem solvers and would talk rounds and rounds about kids and how they learn. We were going to change the world. I believed in the kids as much as her. I just knew with our help they were all going to thrive. I remember though, she would call all of her kids “smart.” At the time, I had enough experience with cognitive testing results to make me knowledgeable, but not enough experience with cognitive tests it made me dangerous. At least, that’s how I see it now. At the time though, I really felt I had this learning disability thing down. In fact, I was praised by numerous psychologists for knowing it so well, and for being a great diagnostician myself. Maybe it inflated my ego. I didn’t think so at the time, but I just could cringe now.

Okay I’m stalling. I’ll just say it.

After one IEP meeting for a kid who had come out below 80 on cognitive testing, I had a conversation with this SPED teacher that went something like this:

Me: Jamie, we both believe in this kid, and we both know he’s going to make growth and that he’s got so much potential, but do you really think you should be saying he’s smart?

Jamie: But he is smart! He can do………..

Me: I know! I know! I mean, don’t you think though that we should be honest and not give false hopes?

Jamie: You don’t think he’s smart?

Me: I think he’s……capable. I think we should say he’s capable, because he is, but telling parents he’s smart doesn’t seem ethical. His IQ is in the 70’s.

I cringe again to say I think I won that argument.

How dare I?? How DARE I tell a teacher who believes in her student that he isn’t smart. Who was I? Who was the psychologist? What is in ONE number given on ONE day, when a CHILD IS STILL DEVELOPING?

Oh I’m so mad at that Laura, and prouder than ever to have worked with that Jamie. So Jamie, you probably don’t read this, but if you’re out there, you are a DAMN good SPED teacher, and if your think your student is SMART in spite of a stupid cognitive test, then I hope you never listened to me and say it.

I desperately need a teacher like you right now. I desperately need to hear that someone else other than me and her grandparents think she is smart. I desperately want just ONE professional at some point at least see what I see. I don’t know why I need to hear it. I know in my heart she is not only capable but smart too, but to hear it, just the thought that maybe someday I will hear it……. is bringing tears to my eyes.

I always quote her, but it’s always appropriate.

My dad always said you have to be humbled to make growth. *gulp* For A, I take a bite of my humble pie.

May 20, 2015
Let’s Link Up for Apraxia Awareness Day 2015

Please feel free to add your link about any apraxia related blog post. Let’s Link-Up for CAS awareness!

An InLinkz Link-up

May 10, 2015
Ignorance is bliss, but Awareness is POWER

Ignorance is bliss. Yes, yes it is. I can tell you this from personal experience. If ignorance is bliss, what is hindsight? Oh right, yes, I know. Hindsight is 20/20, meaning looking at events afterward seem so much clearer than in the moment. That much may be true.

I was going through some old home movies. Our 10 year wedding anniversary is coming up, and I guess I was feeling nostalgic. Of course, there were other videos in the pack too. A lot of Ashlynn, our first born. Everyone always remarks how they had so much time to document everything with the first born, and Ashlynn was no exception. I waited until she was 2:11 to get her evaluated, partly out of pride, partly out of denial, and partly out of a love greater than anything I had ever known.

Tonight my husband and I watched a Christmas video we had rolling in December of 2010. Ashlynn would have been 1 year 2 months. At the time, we are two young parents happy in love, and giddy with our baby. Dear Lord she was perfect. I remember that night. Everything about her was perfect to me. I remember a picture of her I posted on facebook, bow in her hair, wide eyed, wondrous, in front of our tree….and I had said “everything about this picture is beautiful to me.”

Looking back on it tonight, I see things I didn’t see before……I didn’t want to see before. I see her flat head. Yes I saw this before, but it was really noticeable. I remember desperately trying to do tummy time with her, and her hating it, not being able to push herself up, and she felt like she was suffocating. I tried everything to keep her off her head, but delayed gross motor milestones meant she was frequently on her back.

My husband remarked on the silence. If you were not looking at the video, you would have no idea a 1 year old is present. Her silent voice was deafening to us now. Especially since we went onto have a son, a VERY loud son.

At 14 months, she was pulling herself up with the furniture, first starting on the top part of her foot and then rolling it to stand in position. She was floppy. She fell….. A LOT. In fact, there was a bruise on her temple. “She’s just so little” my husband would say. We didn’t see the apraxia then, glaring at us now.

The video panned to a few later random events. Each time her daddy would walk in she would smile the biggest smile and give a shaky closed fist wave. Back then we saw a a baby girl in love with her father….today we saw a baby with global apraxia. I thought to myself though…oh how ignorance was bliss. How we doted and awed at her. She still was nothing short of perfect.

We saw a video of her self-feeding scrambled eggs. She would shove them in closefisted ( a delayed milestone we realize now). She became red at one point, wide eyed, looking panicked. In the video I playfully asked if she was pooping. I had no idea. As I sat watching, my husband said it for me….”she’s choking.”

Yes, she was choking. Gotta love that oral apraxia and the fact she never had an oral phase or chew to her swallow. 🙁

I thought she was adorable though, and went on to praise her and tease her as only a mother could.

She’s come so far. Her re-eval revealed articulation skills in the low average range which is incredible. With apraxia awareness day upon us, I shot a video of her. Granted she was speaking on the spot with a script, but I always say the apraxia is almost resolved, and it is…I think. But with this format, as I watched her, I saw every single diagnostic marker glare at me again as I watched her sweet face on video.

In fact, prosody, or the melody of speech is one thing I have always thought she was amazing at….but when asked to do a script, I saw….the slow pauses, inappropriate stress patterns, decreased intelligibility with longer phrases…….and I have to tell you it hits me like a ton of bricks. My entire career now is based on working with kids with apraxia. I know what I am looking for and I see these things on a daily basis. Seeing them in my own child thought still has me blind….until I see her on video.

My message this apraxia awareness day is to remember, every child is “fearfully and wonderfully made” in their mother’s eyes and ears, even if that eye and ear is now professionally trained to see and hear apraxia. My message is that despite so many odds against her, I cannot help but believe the world for her. That despite so many barriers, I cannot help but believe she will not knock those down too, like all the ones that have come before her.

My message on this third annual apraxia awareness day is to tell you that every mother sees nothing but perfection in their child, and they need YOU…the SLP….the OT….the PT….the teacher…..to believe in them too. They need you to know this because apraxia can be overcome. It can….. but they need a dream team of therapists and teachers. We NEED you. We NEED you to know that frequent and intense therapy does and CAN make a difference, but we don’t want to have to fight you for it at every IEP. We NEED you to realize it too.

That’s why awareness is so important.

Our children may have apraxia, but it DOESN’T have them….especially with your help.

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May 8, 2015
Word FLIPS giveaway!

Day 5 leading up to Apraxia Awareness Day on May 14th has me offering a giveaway for Word FLIPS by Super Duper Publications.

Word FLIPS can be a useful and handy tool to use with kids who have apraxia. It allows practice for simple CV syllable shapes for up to 3 repetitions. It also allows for combining combos to form other bisyllabic words i.e. tie+knee = tiny. I usually give my kids one of those finger pointers and we take turns pointing at and saying the words.

Taken from their website:

“Word FLIPS includes three sections of identical picture words with four tabs in each section that divide the words according to articulatory placement: Bilabial, Alveolar, Velar, and Palatal. Begin teaching severely unintelligible children by having them repeat identical earlier developing sounds, such as “boo-boo-boo.” Older or more verbal children can practice a variety of sequences, such as “tie-tea-shoe” as a warm-up to practicing sentences.

Must be a U.S. resident. Good luck!
a Rafflecopter giveaway

May 5, 2015