SLP Mommy of Apraxia

Tag: Beating apraxia

The biggest apraxia challenge: Graduation 2032

Day 21 of Apraxia Awareness Month is to discuss your biggest challenge.

I read the various posts and related to all of them. ALL of them. Unfortunately when your daughter has a laundry list of disabilities with apraxia being just one of them, yes, I could relate to everything.

“My son struggles with word finding.” Check

“My son struggles with anxiety.” Check

“My daughter struggles with attention.” Check

“My child has difficulty navigating social situations.” Check

“My child struggles with handwriting.” Check

“My child struggles in school.” Check

Literally the list goes on and I could check off almost everything else. I’m farther in this journey now though and though we continue to have new challenges, I had an epiphany about them.

The biggest challenge was realizing the very definition of challenge does not mean struggle.

No. The very definition means a contest, competition, or objection. And guess what? One can argue and overcome ALL of those things. If you follow my social media pages, then you know Ashlynn is having a stellar last couple of months. The girl with dyslexia who was more than two years behind in reading is testing on grade level. She just graduated occupational therapy after being in private OT for SIX years. At field day, the girl with dyspraxia and cerebral palsy wowed her classmates by killing it on the hippity hop ball station, and the girl with a language processing disorder and apraxia is just “one of the gang” according to her general education classroom teacher.

The biggest challenge was not just hoping, but holding firm my belief that Ashlynn could overcome them all.

Ashlynn just ended her third grade year and she is 9 1/2 years old. I have been through AT LEAST 8 IEP meetings. I have been brought to the edge of despair. I have watched my husband shed tears in front of strangers. I have looked around a room of literally EVERY discipline (speech, OT, PT, Special Education, general education, psychology, social work) and listen as they ALL described deficits in my daughter. I have sat, stone faced and quiet for fear that talking would reveal my anguish and diminish me to a weeping pile of sadness on the floor. I refused to be that person. I was probably rude at times, but I promise it was for self-preservation and to ensure my daughter never ONCE thought I didn’t believe in her.

As one who has been on this journey with Ashlynn, my biggest obstacle was in discovering no obstacle was ever too big.

Armed with this knowledge now (at least in this current space of happy that I’m in), I truly look at current and future obstacles and say, “Bring it. You have never met an opponent like us. You can try to break us, but you won’t. You can knock us down, but we’ll get up stronger.”

An SLP Mommy friend I know posted a video and said “Apraxia created one gritty little girl” referring to her resilient daughter. I couldn’t agree more. Apraxia was never our greatest obstacle. Believing we could overcome anything was, and we did it. I know there are more struggles, more obstacles, bigger mountains to climb but they don’t intimidate me anymore. Ashlynn has proven time, and time, and time again that no matter what life throws at her, if you have a positive attitude, perseverance, and HEART…no one and nothing can beat you.

Starting with one of my most popular posts “Lessons of a Tricycle” to “Lessons from a Bicycle” years later, success has always been waiting for us as along as we just keep pedaling. Just kept trying and never, ever, EVER give up.

This past weekend my niece graduated from college and Ashlynn wanted to try on her cap. We snapped a picture and all commented, “how cute!” But inside, I was silently smiling and thinking, “Another challenge? BRING IT 2032!”

Love,
Laura and Ashlynn

May 21, 2019
Growing up apraxia: “I want them to learn what it is.”

Hi Alexis! I remember first seeing you on the facebook page apraxia awareness and hearing you do a very real and raw live Q&A. That was very brave of you! You were so gracious to answer so many questions openly and honestly. This past year, I set a goal to reach people outside of the United States. I want to help those who have apraxia worldwide get the help they need and deserve!! Having you on this blog post to start May and Apraxia Awareness month is helping achieve just that!! Thank you for your bravery!

To start, can you begin by telling us a little about yourself and your journey with CAS?

I am 23 years old. I am an insurance advisor in Alberta, Canada with the Co-operators. I took speech therapy from kindergarten until grade 5. I remember really realizing for the time that I had a speech impediment when I was about 7. I became interested in learning more about it in grade 6 – what it was & why I had it.

What do you remember as a child with CAS and speech therapy?

Like I said, I started speech therapy in kindergarten. I have really vivid memories of the hearing test they would do. Putting a headset on and listening for the beeping. You’d have to tell the person what side the beeping was coming from. I was always so proud because I aced those tests every time. The pride was usually met with confusion the first few times though. I did so well, you told me I got all of them right, so why do I have to come meet with you for lessons?

I remember being told I had a speech impediment. I remember all of the “that’s not how you pronounce that”, “listen to me”, “watch my mouth”, “it still doesn’t sound right”, but I didn’t get it. I can remember being frustrated and angry. This woman would tell me all these things over and over again and I was sitting there thinking lady, I just heard myself say it, it sounds exactly the same as when you do it. Of course, it didn’t.

When I say the first time I remember really knowing I had this was 7, it’s because I’m fairly sure that was the first time my speech therapist used a tape recorder. This thing was the bane of my existence. I’m 7, over confident, and a little annoyed with this woman because we’re saying the same thing. Was I ever showed up. This tape recorder comes out because after give or take two years my speech therapist must of realized I really didn’t hear what she was hearing. My voice in my head has no speech impediment and I was too young to understand that I just wasn’t hearing it right. I was about to have my little world crushed.

Every session started with me telling her about my last week. This session, she recorded it. The moment she hit play and I had to hear my actual voice, instead of the one in my head, I wanted to disappear forever. She’s not wrong when she says my sounds aren’t right. All of a sudden two years of fighting this woman came crashing down around me. I was wrong, she was totally right, and I sounded (to my very young self) weird. I can not tell you how miserable I was hearing this recording. I did everything I could after that to prevent her from using the tape recorder again. It did help though. My sessions went better and I got more done, because I knew I actually was saying the sounds wrong, even if I couldn’t hear it.

Were you ever bullied?

I know this isn’t what parents are going to want to hear, but yes, I was bullied a ton. The bullying continued all the way into highschool. Luckily for me, I had a great few friends and family members. We really started to look at people who said anything about it as just being sad, or a little pathetic. It might sound harsh, but really of all the things to choose to pick on someone for, this was pretty ridiculous (it’s always ridiculous though). Honestly, “they talk a little different then me so I’m going to bully them”. We’d think about their bullying in that really point blank way, and just laugh at them. That train of thought is may more ridiculous sounding then I’ll ever be.

How has apraxia affected your life, or has it? Do you have any residual issues?

The bullying did affect my life. Most days my above tactics worked great, but of course everyone has their off days where it just sucks. It still does just suck sometimes, but that’s not the end of my world. I still can’t say any of my R sounds. R sounds were the last thing to work on when I was in grade 5, and due to a lack of speech therapists in the school and time, I was seen 3 times that year. Once I got into middle school it wasn’t provided through the schools anymore and the cost was too high to do it privately. Now, I’m 23 years old with no real talent for R sounds. My last name is Berger and I work in the insurance field. Good choice, self. Other than that I have no real side effects or issues concerning my Apraxia.

Most parents are so worried about the future when their child gets an apraxia diagnosis. What would you tell them?

Your child is going to find their voice, it might be missing a few sounds or it might be through something less conventional than talking, but they will find it. We look at speech as so important, and it is, but you can live such a full life without being perfect at it. They are going to have talents and skills all their own that have nothing to do with how they talk, and chances are their speech being a little off won’t affect it at all. Support them, be there for them, and be ready to answer questions if they have them, but don’t make their entire life be Apraxia. You can find your voice without talking perfectly; talking is really the smallest part of it.

What do you wish more people knew about apraxia?

That it existed. No, really, just that it existed. I have been explaining this to people for about 11 years now. What it is, what it does, why I sound the way I do, and answering their questions. I just feel like if more people had known what it was when I was in school, it wouldn’t have been such a big deal to them.

What would you tell a child who is currently struggling to speak or who lives with a dx of CAS?

Don’t feel pressured to tell people it’s an accent. Most of my life people have thought that’s why I sound like I do. On an almost daily basis people ask me where I’m from. I always politely tell them it’s a speech impediment and give them some basic info. I want them to learn what it is. The most common response? “Oh, you should just tell people it’s an accent”. This is my absolute biggest pet peeve. The truth is, if someone tells you to say it’s an accent it is because they are uncomfortable with your explanation and with the truth. They feel a bit bad that they asked you where you from and they were wrong about it. They wouldn’t have to feel that little awkwardness if you had told them it was an accent and played along. I can promise you this is the real reasoning 99% of the time, even if people deny it. Do not let someone tell you to say you have an accent, unless that is truly more comfortable for you and what you want to do. You have a speech impediment. It is a part of you and there is absolutely nothing wrong with having one.

Aside from that, if you are working through your speech therapy at the moment, listen to them when they tell you to practice at home. I was supposed to practice my sounds in front of a mirror for at least 20 minutes a night and I flaked on it all the time. Don’t flake on it. Practice the sounds, it really will help things.

What do you think professionals such as teachers and therapists need to know about CAS?

Number one thing is that it exists and what it is. I have had so many awkward moments with teachers over the years. The second thing is how to handle it. If the student is old enough, ask them if you can help in some way. If they are still quite young, ask the parents.

I had teachers make me repeat an answer in class (in middle and high school) over and over and over because they couldn’t understand what I was saying. It was embarrassing. The other students would laugh and the teacher still wouldn’t realize that they should probably just stop. I would go up and just write what I was saying on the board. Then I’d get in trouble because it was unnecessary to do. Let your students help themselves and help you understand them.

If a teacher didn’t understand me after a few tries often one of my friends would just repeat my answer to them. This was great for me. I loved and appreciated them for doing this. Sometimes the teachers would get angry about it though. Let them help if need be!

Another big one is if you pick me to read something out loud I might take an extra second to read a word out. I would be thinking of how to pronounce it and trying to be sure it was going to come out properly. The teacher would just interrupt and say the word themselves. Let your students at least try to get it out. If they do happen to mispronounce it, see if they correct themselves. If they don’t correct themselves and just keep going, then leave it. Do not point out their mispronunciation in front of an entire body of students. If they are still in speech therapy you could try writing it down and letting them know after class which words came out wrong. Then they can take that to their next session as helpful information.

Thank you Alexis! This has been one of my favorite interviews. Your honesty and candidness are exactly what people need to here. I love your perspective. I just can’t say enough. Thank you for your willingness to share your story!

Growing up CAS is part of an ongoing series that aims to celebrate neurodiversity and highlight those who have grown up with Childhood Apraxia of Speech and related struggles. If you are interested in being featured, send an email to lauraslpmommy@gmail.com

April 30, 2019
There is either fear or hope. Pick one

Life would be so much less complicated if we lived on breaks. haha. Yes, that is my opener and I realize it’s not only a statement captain obvious would make, but it’s completely devoid of reality.

Seriously though, breaks are awesome. Family comments how far Ashlynn has come. We are all stress free (well at least from school and work stress). We can spend time as a family doing things together we wouldn’t normally have time to do. We’re not in “go” mode all week trying to get to school, to therapy, get the homework done, and all the other million appointments we have.

I don’t have a daily reminder of how hard things are for Ashlynn, like tonight, doing homework with her again. Don’t get me wrong, she’s improving…so, so SO much. It’s just, when we’re doing homework, I realize we’re improving, but nowhere near the pace the class is going. I feel like Ashlynn is more keenly aware of it too now, or maybe she always has been and now she can just verbalize it. Tonight we did her reading, her math, and then practiced her spelling test. I think she said at LEAST 8 times something like, “it’s just my brain! ugh.”

We are not punitive. We are patient. We tell her EACH time, something to the effect of, “Ashlynn, it’s okay sweetie.” and I might add, “you have apraxia and also have a hard time getting the words out, it’s okay. The more you practice the better you’ll get,” but then she’ll stumble on a word again, or say the wrong number when we are counting by tens and hit her head and again announce “Ohhh my brain!’

Hearing it once is hard. Hearing her say it twice is hard. Hearing her say it repeatedly despite our words of reassurance and patience is excruciating.

Damnit. Damnit. I had to walk away and have my husband help her. This isn’t fair!!!

I got on my phone and checked fb. In the apraxia group a woman posted a picture of her son crying while looking at a reading passage. My heart broke all over again. Stupid apraxia. Stupid apraxia. Ashlynn isn’t crying….yet. Will she be? Will she get to that level of frustration?

I was feeling down again. Two weeks back at school and I feel sad again. All that joy and happiness of the vacation gone.

Then I read this. A blog post by an adult who had grown up having apraxia. She outlines the day she went back to her old reports and progress reports and how she discovered that in early elementary school she spent 80% of her time in special education. She says the reports all started with how teachers would comment she was a hard worker and tried hard. I immediately thought of Ashlynn. Every report says that about her.

She talks about how she just wanted to feel normal. She says you could see her “subtle progress” through the years as she started spending more and more time in general education. By highschool she still had report cards that said she was a hard worker and tried hard, but now she had a GPA of 4.5. She muses that she doesn’t even know when that transition from “special education” to “straight-A honors geek” even happened.

She concluded that apraxia fueled her strong work ethic, and though she is sad she never achieved “normalcy” she decides maybe it was all for the best.

I needed to read that right now. I needed to read that because I needed hope.

You know what drives parents of special needs kids? You may think it is the love for them, and yes of course that is true. However, at the core, even on the darkest days, what drives us to face a new day with strength while we hold their hand is….hope.

Hope is the belief that despite any challenges we may face and how many times life will knock us down, we will wake up tomorrow still standing, still growing, and still achieving. Sometimes hope may be a flicker, and other times a fire, but as long as it is still there, we will continue to rise

again

and again

and again.

Thank you Alyson for sharing your story AND re-igniting HOPE.

January 12, 2017
She is a fighter, not of guts and glory, but one of understated grace.

Well, Ashlynn completed Kindergarten. It was pretty anti-climactic to be honest. For some reason, her school doesn’t believe in Kindergarten graduations. Okay, it’s not for “some reason,” it’s because the philosophy of the school is that graduations signify an end and Kindergarten is just a beginning.

I get it…kind of. Actually no, I don’t get it at all. If that were the case, we wouldn’t celebrate any graduation because technically every end starts a beginning. I don’t think that’s too philosophical. Whatever though.

It’s an odd thing. When I was younger, people flunked. I literally never hear that term anymore. Now that I’m in education, kids are “held back” or kids are “retained” or kids are “not retained” because they are in “special ed” and you don’t “retain” if a child is in “special ed.”

I received Ashlynn’s report card. When I was little, I LOVED that little manilla envelope. It was a little pocket that guaranteed me lots of praise from my parents….maybe even a trip to Dairy Queen.

I looked at it now in her backpack with dread. What would it possibly say? I know it didn’t say she flunked. She’s in special education and she won’t be retained. However, I know it didn’t say she was on grade level either. If that were the case, she wouldn’t be in special education.

Sigh

I debated not opening it. What does it matter?

I let it sit for awhile. I pulled it out, but didn’t open it. Instead I looked at the pages and pages of work sent home in her backpack that she had done from the Fall to the Spring. Progress. Amazing progress. Pages and pages of hard work rested under my fingers.

Math:

Really though, writing these numbers is not just math…it’s an occupational therapy success. Ashlynn has just as much difficulty learning to write because of motor planning difficulties, as she did to speak. Despite knowing how to write an S for awhile now because it’s in her name, she frequently writes a number 2. That’s just one example of many.

Everything else!

Drawing and writing:

Fall 2015

Spring 2016

As much as these pictures make me burst with pride…there is an underlining sadness….guardedness.

When I first started as an SLPA ( Speech/Language Pathologist Assistant), one of my supervising SLP’s showed me a book. The book described how children’s drawings correlate to IQ.

The above pictures show Ashlynn’s progression. Before I had Ashlynn, I didn’t realize picture drawing could be a measure of disordered motor planning and NOT IQ…as in her case. That last picture is after intense intervention.

This last graph looks impressive right? It IS impressive. However, it represents the “sight words” Ashlynn learned throughout the year. When she started, we were still working on identifying uppercase letters, so she made progress on that…but yeah…sight words are going to take a back seat. She is still abysmally behind where she should be….but if one considers where she has come, it is impressive.

Ashlynn wasn’t even talking three years ago, so of course, everything else is going to take some time. The point is though…the most important aspect is that….

Ashlynn ALWAYS grows. She ALWAYS progresses. She was born behind the eight ball. SIGNIFICANTLY behind the eight ball, but that girl doesn’t give a shit about analogies…or about pool for that matter. All she does is: WORK

She WORKS

Her report card wasn’t terrible. I really appreciated how throughout the report card they noted Ashlynn works hard and that she made great progress. So, that’s where we are at.

One day, when (if) Ashlynn ever reads all I have wrote, I hope she remembers this:

You are a fighter, but not one of guts and glory, but one of understated grace. Despite any challenge, you have never wavered from achieving your goals. I watch you day after day and see how badly you want to read, write, draw, dance and skip. I don’t know these things because you tell me with loud words and fists banging on the table. I know these things because I watch your tireless and humble pursuit of them.

When you have earned prizes for behavior, you choose books, cards, sticky notes and journals. You spend your time cutting and writing at your craft table, even though much of what you write is still not legible. It never deters you. It never distracts you from your goal.

At night, you always have cards, papers, or books in your hand. I come in before bed and place them on your nightstand so you have a place to sleep. You “read” your stories to your stuffed animals that you call “friends” while your finger tracks words you still can’t read.

While other children rejoice for the break that is summer, you ask daily when you will go back to school, to first grade, to be exact. You cheer when I announced we would do homework every morning before we go out and play, and you diligently trace and write your name and letters, making numerous errors despite years of OT now. I watch you smile and laugh away your mistakes, so forgiving of yourself as you smile and say “oops, I messed up. Let’s try that again.”

So Ashlynn, if you remember anything in this life, remember where you have come and where you are now. Remember that where you began, or even where you are at when you read this someday, is NO indication of where you will end up. Remember that though you are small and sweet, your heart beats the beat of a true fighter. You are courageous, strong, and brave in the most beautiful of ways. Humble, kind, and forgiving, even of yourself…..something most adults have yet to master.

I used to care about failing before I had you. I was a perfectionist and never wanted to take risks. You make me realize though, that if we don’t take risks, we never succeed either. We merely exist. My life is more amazing now that I take risks. I don’t fear failure because like you, I can always try again. Watching you go to battle everyday leaves me with sorry excuses if I don’t do the same.

Your report card means little to me. I’m not sure if I’m finally starting to accept the numbers or I’m just having a good night, but it didn’t ruin me like it used to. Maybe that’s because I see you and I know you will succeed, and Ashlynn, I will do everything in my power to help you.

June 9, 2016
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
Does she really want to swim? I never really know.

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

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

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

EVER.

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

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

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

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

I saw the light go out in her eyes.

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

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

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

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

“Why?” she asked.

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

“No,” she admitted.

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

Silence

“Okay A?”

“Okay, mama. I’ll try.”

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

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

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

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

Josh lets go…

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

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

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

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

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

“Mama! I float by myself!”

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

“Thank you mommy, ” said A.

“For what?” I inquired.

“For swimming” she said sincerely.

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

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

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

July 20, 2015