SLP Mommy of Apraxia

Category: apraxia blog

A letter from Ashlynn? To my future self….

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.

October 28, 2015
My “why” is bigger than any knockdown punch

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.

October 28, 2015
She has never asked for anything before…how could we say no?

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.

October 28, 2015
From no fan….to super fan….in two months.

There have been critics to my Ronda story, most voicing their displeasure on how she is not a good role model for kids. She swears, has done nude photo shoots, fights people for a living, or whatever. My intention for Ashlynn is not to look at anyone’s faults or judge their decisions. My intention for Ashlynn and all the other kids out there was to see that someone not only beat apraxia, but that they went on to be the best at what they do. The VERY best at what they do. That they give interviews in which they are speaking articulately, and acting in movies that have a lot of speaking parts.

However, now that I have learned a lot more about Ronda since that fateful day I met her and knew virtually nothing about her, I can firmly say even more I think she is a standout role model for our kids with apraxia.

I also am surprised that I have come to respect the sport of MMA and the UFC behind it. I would have never paid attention to the sport if not for Ronda. Lumping it together with WWE in my mind, I had no interest of ever watching it. Since I’ve been following it now though, I was impressed after her most recent fight in which Ronda said the UFC and the sport of MMA is the only sport to not delineate champions from the champion, and the “women’s” champion. She was proud that is the only sport not to do that. As it currently stands, she is THE champ.

That’s not the best part though. The best part came yesterday. Upon reading my story, the chief editor Seth Kelly of UFC: the Official Magazine, sent Ashlynn and autographed glove worn by Ronda Rousey in one of their magazine photo shots. He had heard about my story when his wife forwarded him it and decided he wanted to send this glove to Ashlynn. As if that wasn’t amazing enough, the box came yesterday, but a typed note from Seth was included. It said,

“I read your mom’s story about meeting Ronda Rousey. I’m proud of you for going up to the champ and talking to her….all by yourself. You are clearly a brave little girl on your way to becoming a brave, strong woman. Hopefully it (the glove) reminds you of one of Ronda’s greatest qualities for years to come. She never quits and neither should you.”

Honestly, I couldn’t read it the first time without tearing up. I had just written yesterday a blog post about how Ashlynn never quits, ending my post with “it’s hard to beat a person who never gives up,” and then this shows up on our doorstep.

I tweeted out a thank you, and he wrote back

Have I mentioned I don’t believe in coincidences? Another message. The timing….perfect. I hope one day when Ashlynn is feeling discouraged, uncertain, or if she is doubting herself, as we all do at one time or another; she will remember this experience, read about this experience, and know with absolute certainty she is a fighter and an overcomer. And it wasn’t just her mom who loves her who thinks so.

That was going to be the end of my post. I didn’t get this post out last night though like I had planned, but I guess I wasn’t supposed to. This afternoon the MMAJunkie.com posted an article based on my story and an interview we had last Wednesday.

Ronda Rousey, Apraxia of Speech, and the Space Between Luck and Coincidence

I’ve been pretty nervous to give interviews. After USA Today first ran my article and decided to choose the title:

Ronda Rousey discusses the rare disorder that made her think she was stupid as a child,

I was pretty pissed. I know they write headlines, but this was just disrespectful. Anyway, last Wednesday I spoke to a nice gentleman named Ben Fowlkes and we had a great talk. After I hung up the phone, I started freaking out worried he would twist my words.

I was pleasantly surprised. I was also surprised, and then giddy to see he had interviewed AnnMaria De Mars, Ronda’s mom! Everything she said was perfect. I texted fellow apraxia moms and we all agreed, that woman is one of us:

“That was one of the things that, when I was interviewing there, I specifically asked about, was if Ronda could get speech therapy services there, and more than once a week,” DeMars said. “When I talked to the woman who was the head of the clinic there, I said, ‘I really need the best speech pathologist you’ve got.’ She said, ‘Oh, they’re all good.’ I told her, ‘Look, this is my baby we’re talking about here.’”

I couldn’t help but smile. De Mars, so intuitive, so strong, an advocate, a mother, and most certainly, the mother of a champion.

I read a comment once that said there is no limit to what a mother will do for her child, and De Mars is no exception. She knew to advocate, to question, to pursue before we ever had all this information about apraxia like we do now. Fowlkes wrote Ronda was uncommonly lucky to have DeMars for a mother, but I must respectfully disagree. I personally think it was no accident Ronda had DeMars for her mom…….but that’s just me.

After reading this article, I now had a new-found respect for the MMA. This journalist handled my story with integrity and professionalism.

I’ll end this story like Ben did in his article. What do I think of the UFC & MMA after only learning what it was 2 months ago?

“I follow it now, baby.”

August 16, 2015
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.

August 14, 2015
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

July 27, 2015