Tag: Apraxia journey

  • Don’t dare to compare

    Don’t dare to compare

    Ashlynn was my first child.  In a way, it was fortunate I had nothing to compare her to, and in a way, it was unfortunate I had nothing to compare her to.

    My son Jace is my second child and is currently 16 months.  He not only walks…he RUNS.  He not only babbles and says words, he puts two and three words together!!  Every time he hits a milestone, my heart bursts with pride; and every time he hits a milestone a tinge of sadness seeps in when I think of just how long it took Ashlynn to do anything he does. 

    I hate that.  I hate comparing.  I wish that when someone told me how they know they heard Jace say “what’s over there” in his baby jargon that they could understand, I could smile longer than a fleeting moment until I wondered when Ashlynn finally put those three words together.  I wish when someone told me how they swear they heard him singing the ABC’s, I could beam with pride longer than a second before my mind swirled to countless days singing ABC’s with Ashlynn on the iPad, the fridge toy, the vacuum toy, in the car, while reading a book and still not hearing her be able to say “A.”  I wish that when he drank out of a real cup, a straw, a water bottle and looked at me with pride, I could be there only in that moment with him, and not start to think about how Ashlynn still chokes drinking her sippy cup.

    These pictures show Jace age 16 months, and Ashlynn age 18 months.  In her picture you can see her open mouth posture (low tone) and also see the flexion in her feet.  She was just barely walking and walked on her toes.  I stretched out her calves everyday in the bathtub. 

    It makes me think about a quote from Temple Grandin, “There needs to be a lot more emphasis on what a kid can do, instead of what he cannot do.” 

    So let me say, even though Ashlynn didn’t talk, or sing her ABC’s, her sweet smile and bright eyes lit up a room.  Her soft and gentle touch melted hearts, and her giggle was and is still contagious.  She may not have drank from a real cup or a straw, but she would hold out a goldfish to a friend to “share” and she would pat the seat next to her forcing whomever to sit down and enjoy her company. She may not have ran when we went outside, but she would lay down next to me staring at the clouds and sharing a perfect moment in the summer sun.  She may not have told me when she was hurt, but she was the first to look concerned if she thought her dad or I was. 

    Yes, there does need to be a lot more emphasis on what a child CAN do, and from now on, I hope to not compare, but to focus on what each child does well!  I’m so proud of them BOTH and I want to be proud of each of them and revel in those moments.

     
  • Lessons from a tricycle

    Lessons from a tricycle

    We bought a tricycle for Ashlynn three months before her third birthday. My husband and I took her to Toys R Us, excited, full of hope and expectation. I had seen two-year old children on Facebook gleefully riding their trikes with big goofy smiles on their faces, and I couldn’t WAIT to snap that happy gleeful face on my little girl.
    Pregnant with my son, we all left the store and I had visions in my head of me walking to the park, with her riding her trike in front. I would occasionally have to call for her to stop so she wouldn’t get too far ahead………….
    ….but it was me getting too far ahead that night. One year later, with aching backs and frazzled patience, my Ashlynn still can’t ride a trike.  She has made progress though and can now not only keep her feet on the pedals, but can also keep them “straight” on the pedals where her heel isn’t constantly coming into contact with one of the bars.  As for the actual alternating pushing motion, that is still to come.  
    You’d think she would be frustrated, but the opposite is true.  As kids whiz by on their bikes, she happily laughs, giggles, and asks me, “See bicycle mama?”  and then with determination in her face she gets up on her tricycle again, ready to practice. Like most other motor tasks, this one too will take time.  It will be a journey to success, but success will surely be there; waiting more patiently than me.
    However, I’ve learned success is never really about the outcome, just as riding a bike is never really about the destination.  Every bike rider will tell you the fun and the meaning are found in the journey.  The sights seen, the hills climbed, and even possibly the falls taken.  The lesson learned from the tricycle is more than just learning to ride.  It’s a metaphor for life, and of one thing I”m certain.  Ashlynn will always be a success because she has already learned: the fun is in the journey.
  • Nine year old Katie with apraxia sings “Brave” and dedicates it to Ashlynn :)

    Nine year old Katie with apraxia sings “Brave” and dedicates it to Ashlynn 🙂


    CASANA has a parent support group on facebook called APRAXIA-KIDS – Every Child Deserves a Voice.  If you have a child with apraxia, I highly recommend joining this group. Sharon Gretz, the founder of CASANA, is an active member, but there are also other SLP’s, advocates, educators, and of course parents who care about these little ones.

    I recently vented to the group about my sadness over the park incident, but then shared my blog post about hearing the song “Brave” and how it made me feel better.  A parent to a nine year old girl sent me the following note:


    when Katie was diagnosed at 2 1/2 with CAS she was 

    considered severe and significantly delayed. She just turned 

    9. She told me to tell you this song is dedicated to Ashlynn. 



     http://www.youtube.com/watch?v=P5q907Ojdfc

    The video is her daughter singing “Brave!”  How awesome is that?  So inspiring for all of us with little ones who are struggling to talk.  

    Katie sings beautifully.  All the therapy, all the tears, all the sadness her mother felt are a distant memory when you hear her sing.  Katie found her voice and then some!  Ashlynn loved the video and told me, “sing dood.”  Yes, Ashlynn, Katie sure sings good and YOU will too some day 🙂


  • “Say what you want to say, and let the words fall out.  I want to see, I want to see you be brave.”

    “Say what you want to say, and let the words fall out. I want to see, I want to see you be brave.”

    I heard a new Sara Bareilles song the other day.  I love music, but I really felt like this song was written for A.  It’s been a struggle to get her words out.  Even now, the other day at the park she was talking to a little girl appropriately saying ‘come on” and “let’s go again!”  It sounded more like, “tum on!” and “yet do adain” but she was DOING it.  She was putting herself out there, and REALLY talking.

    After a short time, the little girl asked her, “Are you a baby?”  A, looking confused, just covered her eyes and laughed at her.  On the sidelines, my heart broke.  How DARE this child say that!!!  Didn’t she know how much it took for my daughter to put herself out there and talk??!!

    Of course the rational side of me realizes this girl is just a kid who didn’t mean to be malicious or mean.  But the mommy in me wanted to teach her a lesson.  Instead, as usual, the person doing the teaching was A.  As she laughed at this little girl, it was really A who had the last laugh.  It was my daughter who is so wise despite her challenges.  Much wiser than me.

    Shortly after I heard this new song.

    “Say what you want to say, and let the words fall out.  Honestly, I want to see you be brave.”

    A is braver in one hour than I ever have been in my entire life.  I love you little girl, and I love seeing you be “BRAVE.”

    http://www.youtube.com/watch?v=QUQsqBqxoR4

     

  • She is the definition of perseverence (a poem)

    She is the definition of perseverence (a poem)

    You went to speak, but the words wouldn’t come,
    Stuck in your brain,  so easy for some.

    You went to crawl with the best of intents,
    Yet your body didn’t know what your brain meant.

    You went to walk, big smiles and all,
    yet every time you tried, it ended with a fall.

    You went to drink from a big girl cup
    You would sputter and spit till it came up.

    A new car for Christmas kids want to ride
    Spins in circles, hard to learn how to drive.

    But

    You are a living example to persevere
    and with it you conquer all our fears.

    One day you said mommy, and I love you
    One day you crawled to daddy’s shoe.

    You don’t just walk but now you run
    You drink from any cup till it’s done.

    and I know in time you will do it all,
    with  more patience and practice
    you will conquer it all.

  • So many things require motor planning, including a computer mouse.

    I’m so frustrated today!  To make it worse, I’m frustrated with myself for being frustrated.  I went to put Ashlynn on abcmouse.com, and early learning site for kids as young as two.  Since she’s 3.7, I figured this should be great.  Wrong.  Turns out using a mouse requires a high degree of motor planning and coordination.  God.  It sucks.  She can’t even do things two year olds can do.  I mean, she can, but it’s going to take a high degree of practice.  It’s not fair!!  I just want to cry. I mean, forget using the site for educational purposes, we’ve been stuck on the tutorial just trying to help her get the hang of the mouse. 

    It’s not that she’s not trying either.  She’s so excited like she always is, smiling, happy to be learning something new.  It’s just where most kids get to actually use the other programs on the site, we are using it to learn how to use a mouse.  This is something two year olds can do! 

    Why does everything have to be so hard for her?  Anything she’s ever done has required so much more practice.  Everything she’s accomplished has not come easy, yet she perseveres with a smile on her face.  I have so much to learn from her.