SLP Mommy of Apraxia

Category: Apraxia

  • For once I went to school, and I heard only positives

    For once I went to school, and I heard only positives

    Let’s face it.  Being a parent is rough.  Whether you have a child with special needs or not, we all want for their happiness, that they will feel successful, that they will be confident, and that they will never hurt.  Of course we know that without trials they cannot fully appreciate the successes, without sadness they could never fully experience complete happiness, without hurt they simply wouldn’t be human. 

    School has been an absolute blessing for Ashlynn, my social butterfly.  She never let her limited speech hinder any of her relationships.  In fact, her first word was ‘hi’ and it was all she needed.  She could and still can engage anyone with that simple word and her beautiful smile, and they are hooked. 

    But

    That’s why it was so hard to go to IEP meetings, parent teacher conferences, and get reports from her teachers and therapists.  No matter how many positives were relayed, we always sit there waiting for the

    But.

    She is so happy and works so hard,

    But

    She is friendly, sociable, and loving

    But

    She is an absolute joy

    But

    I’m not gonna lie.  The “buts” hurt.  It really doesn’t matter if they are framed around 100 glowing adjectives, the “buts” can be overwhelming.  Especially when for one child she needs a

    speech therapist
    occupational therapist
    physical therapist
    special education teacher
    social worker

    They all come with their own set of “buts.” 

    Today though was different!!  Today, her last day of Pre-K, there were no “buts.”  Today, as I picked her up, I heard this:

    Teacher: “I have been blessed having Ashlynn is my class.”
    Social Worker: “Ashlynn is the sweetest, kindest child. She is friends with everyone, and everyone is friends with her.”
    Another parent: “My son told me this morning he was really going to miss Ashlynn. When I asked him what he would miss, he told me her laugh.”

    It just brings tears to my eyes. There’s no standard score or percentile for that….but if there were she would be way above average. 
      
    Ashlynn is my sweet, kind, loving, daughter who blesses those around her with her smile, her laugh, and her friendship.

    No buts about it.


  • The day I realized apraxia has been a blessing.

    The day I realized apraxia has been a blessing.

    Yes, you read the title correct.  I just called apraxia a blessing.  It took me a long time to get to this point.  I certainly didn’t feel it was a blessing here 2.5 years, or here, New worries, or here IEP on the other side of the table, or here Background and suspicions.  I remember shouting “I HATE APRAXIA” “APRAXIA SUCKS!!” everytime I watched my daughter struggle.  Slowly but surely though, the blessings started to outweigh the diagnosis; in fact, blessings started to develop out of the diagnosis.

    I was talking to a mom the other day from Georgia at Mommy Square, and she told me she has met a lot of friends because of apraxia.  It got me thinking that I have too.  I have a mom from Syracuse with whom I formed a connection because of our commonality of being mom’s who were ALSO SLP’s.  We shared our frustration at the lack of knowledge surrounding apraxia, and our mission to be educated on it.  I have a mom from Utah who has a daughter the same age as mine with apraxia.  We blog, collaborate, and fight apraxia together.  I met Sharon Gretz,  the founder of CASANA, the non-profit behind the apraxia-kids website.  Meeting her was a pivotal, inspirational moment in my life.

    All these moms have one thing in common.  They all are incredible, inspirational women, and they all go through extraordinary lengths in the names of their child.

    I am blessed to have found and to know each of them.  I am blessed to understand from an emphatic position what it is like to have a child with apraixa.

    I am blessed that I was chosen to be her mommy, because through her I have learned the true meaning of perseverance and bravery by seeing them through the eyes of my daughter.

    I am blessed because we have so many people in her corner.  Grandma’s, Grandpa’s, Uncles, Aunts, & cousins all cheering her on.

    I am blessed because out of the struggle has come joys I could never have dreamed of or experienced myself.

    I am blessed because though her dx could have brought distance between my husband and I, it only brought us closer toward the common goal of beating it.

    I am blessed because my husband confided one day that when he starts to feel bad about the hand Ashlynn was dealt, he always sees her overcome it.

    I am blessed because if not for her, I wouldn’t have set a goal to specialize in apraxia, and in turn, I may not have met all the wonderful people I have met, or been able to treat all the wonderful children I am priveleged to treat.

    I am blessed because I never take for granted one word, one sentence, or one song.

    I am blessed because I know other parents who feel the same.

    I am blessed because apraxia has taught me gratitude.

    I am blessed from simply being her mother.

  • To say your name

    To say your name

    Most people might take for granted their name. You have a name, you’ve always had a name, and basically that’s that.  Kids with Apraxia have a name too, and they know it just like you.  There is, however, one difference.  Many can’t say their name at first. Can you imagine?  How many times are little children asked their name?  It’s basically the first question strangers ask them right up there with how old they are.

    Every child deserves a voice, and every child should be able to say their own name. A name is not only your identity, it gives a symbolic representation of YOU.  A verbal representation of letters and sounds that come together and allow you to say YOU are YOU. A name carries history, geneology, and meaning to the carrier.  It’s so important, that even if one vowel in someone’s name is mispronounced, the offended will quickly correct the offender. Just recently in the news, John Travolta mispronounced Idina Menzel’s name when introducing her at the Tony Awards read here and she reported that it threw her off for like eight seconds and she had to give herself a pep talk saying “stop worrying about your name and sing this song.”

    So…needless say.  A name is important.

    I remember back to the early days of speech/therapy.  Her private SLP had a great idea.  In those days she was only working on CV and VC syllables.  We could get Ash, and we could get In.  We settled for Ashinn.  I actually was thrilled then when she said it.  After that, it took repetition after repetition to actually put the sounds together correctly and then more practice with her actually remembering and saying it on command.  I have a note from her school SLP frequently about how they would go around her preschool last year and practice saying her name when people asked her. 
    I was okay with this, because as an SLP I know that L within the realm of what we consider a later developing sound.  Basically, it’s still developmentally appropriate not to have an L at three years old, apraxia or not.  
    Now Ashlynn is 4 years 7 months.  Just a few days ago my husband and I went to the grocery store and the clerk asked her, “What’s your name?”  We waited for her to respond and she said “Ashin.”  The clerk as expected said, “Oh Ashley, what a cute name,”  and as expected without even thinking, my husband and I both followed up, “Yes, AshLYNN.”  
    Then came today.  We were looking at pictures in our photo album that I was putting away.  In it, I had some pictures of her friends from school.  I was quizzing her on their names and she could tell me most of them.  We came to a girl named “Calista.” Very deliberately, she said “Ca-Lista”  
    My head whipped around.
    “Ashlynn!  Did you hear the L sound in her name??  You said CaLista!!  Say it again, CaLista.”
    “Ca-Lista.”  
    “Ashlynn!  Do you realize that sound is in your name??  Say AshLynn.”
    “Ashhhhhhh-Lynn.”  
    And there it is.  Today, May 2nd 2014, Ashlynn finally said her name with all the sounds.  So funny how these small things bring big tears.
  • Calling all apraxia bloggers!! Let’s link up for Apraxia Awareness Day!!

    Calling all apraxia bloggers!! Let’s link up for Apraxia Awareness Day!!


    I read your stories daily.  I feel your struggles, I rejoice in your triumphs, and I nod my head in understanding.  You are my fellow bloggers.  I read your blogs like I’m checking the morning paper.  I read your tears and your smiles about your struggle with apraxia, and I share them with you about mine with my daughter’s.  We read these stories as separate entities.  We close the blog and move onto the next, or we write our own story for that day.  What if we all wrote our story together?  What if we all weaved our experiences into an apraxia tapestry?  That is my dream in the Apraxia Awareness Link Up for Apraxia Awareness Day on May 14th.

    I ran across the quote:

    Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

    It’s up to YOU and ME to spread awareness about apraxia.  It’s only the second annual apraxia awareness day.  I am an SLP and many educators haven’t even heard of apraxia and many SLP’s don’t know how to treat it correctly.  I want to read your stories.  I want to hear how you are spreading awareness and I want to link up with you in solidarity!

    Please feel free to link up any posts related to Apraxia.  It can be anything! You fears, your successes, your diagnosis, your Apraxia Awareness Day Post, helpful tips, whatever!!  We want to see it! We want this to be a place to raise awareness for Apraxia, as well as to let others know they are not alone.  We only ask that you link back to link up at the bottom of your post!

  • nacd apraxia app review

    nacd apraxia app review

    This was one of the first speech apps for apraxia that I bought.  It was enticing because it was a good price and the description looked much like a digital version of the Word FLIPS book I was using in therapy.

    It starts with a screen that allows you to pick a CV consonant/vowel group, seen below.

    For the purposes of this review, I chose the top group BPM.
     You then have your choice of levels.  Level 1 is really just to learn the pictures, so each picture is presented one time.  In Level 2, there are three required productions of the same word.  By Level 3 (see above), there are five pictures of the same word. 
    By the time the you choose Level 8, the pictures change to have three different pictures depicting different words in alternating fashion.  (see below). 

    You can choose to have the sound on, in which a verbal model is presented when you touch the picture; or you can mute the sound so a verbal model is not given when you press the button.
    There is a also a “tracking” feature to tally correct/incorrect productions for data collecting purposes.
    What I love
    This app is great because of it’s simplicity.  It’s more fun for kids to practice these skills on the iPad then it is to use the flip book.  They are just more motivated by digital versions of everything these days!  Also, therapy for Childhood Apraxia of Speech requires A LOT of practice and repetition, and this app lends itself to multiple chances for repetitions in either blocked or randomized fashion (elements essential when treating motor based speech disorders).  
    In addition, most of the kids I treat with apraxia like it.  You can get a quick “warmup” in using this app while getting a lot of repetition right off the bat.

    What it’s missing
    I would probably use this app more, or longer during therapy sessions if it had some sort of reward or fun reinforcement.  However, since I only use it as a supplement to therapy, it’s still a nice app to have. Also, just recently my daughter was confusing her t/k and d/g, so I went back to this app and we practiced using these pictures alternating between the two sound patterns.
    The other thing that is missing is a voice record option.
    Overall impressions:
    I love this app for it’s simplicity, price, and ability to get A LOT of practice in a short amount of time.  Most of the kids I treat with apraxia, and my own daughter with apraxia, have used this app successfully and enjoy tapping, repeating, and swiping the iPad.    I would highly recommend this app to parents and SLP’s as a supplement to therapy for Childhood Apraxia of Speech.

  • Still on a sippy cup

    Still on a sippy cup

    Ashlynn is 4.5 years old.  Though as a baby she never really had a problem latching or drinking out of a bottle, she eventually showed signs very early of oral apraxia.  I remember looking at some teething biscuits and the box saying it was for 9 months and older and thinking, “are they for real??”  She’ll choke on that!!”
    I remember my sister-in-law talking about babysitting my niece when she was under a year and feeding her cheerios, and again, I thought, “Seriously??  Ashlynn would choke on that!!”

    I remember after I took her bottle away at 12 months, my mother-in-law said she had all three of her kids on a regular cup.  I know she didn’t mean any harm by it, but at the time I felt like a failure.  Ashlynn could barely handle a sippy, and a cup?? Forget about it!

    When she was eighteen months, my husband I decided to take a weekend vacation for two nights and left her with her grandma, and I remember I was still pureeing fruits and vegetables and had sent 8 jars of food. Now that I have a typical 18 month old, I can’t believe she was still on purees at that point.  She could eat the occasional cracker, but she refused any other solids.

    I can’t totally remember when she finally started eating at least pasta and breads.  I do remember though one night going to Mimi’s cafe and ordering their kids pizza.  It was more like a thin crust and she swallowed her bite whole and silently cried.  Her face turned red and she had that look on her face like when you eat a chip that isn’t totally chewed and it scratches you going down.  Another instance, my friend brought over amazing fresh bagels from Panera Bread.  I cut Ashlynn’s up into pieces.  As I was talking to my friend she started choking.  I ran over and pulled up her left arm and started patting her on the back.  The entire piece of bagel came up whole.  My friend was horrified and honestly, so was I.  I lived in fear, worried about when she would choke and I couldn’t get it up.  Another time I fed her shells and cheese pasta roni and I remember telling her she needed to chew!  She would put it in her mouth, and then immediately swallow.  Halloween when she was two was pretty disappointing.  Give her M&M’s?  Are you kidding?  What if she didn’t swallow!! Skittles?  Nope. Sprees?  No way! Anything with caramel?  Not a chance.

    I’m paranoid now.  I still quarter her hot dogs, grapes, blueberries.  I figured all kids have messy mouths, but now that I have my 21 month old son, his mouth is always cleaner than my daughter’s.  He licks his lips and wipes his chin.  Here is a recent “ketchup mouth” pic of her on our Spring Break.  Isn’t she a doll? She’s so perfect, apraxia and all.

    Which leads me to the title of this post.  She still violently chokes on liquids.  I’m talking about it went down the “wrong pipe,” face turns red, lips turn blue, and we have to pull up her arm and pat her back. This is with a sippy cup!  My husband and I enacted a two sip rule, which is working. We tell her, two sips and then breathe.  We’ll see how this goes, but I wish I had got her feeding therapy earlier.  This is usually done in early intervention through the SLP. She had all the symptoms: over-stuffing, choking, difficulty with chewing, and difficulty sequencing the steps for the swallow.  Hindsight 20/20.  If you read this, and this sounds like your kiddo, get them into early intervention!!  You won’t regret it.  Now I have to decide if I put her in to feeding therapy now, do a swallow study…etc etc.

    I hate apraxia.  I really, really, hate apraxia.  With apraxia, they don’t “grow out of” anything.  They have to work for EVERYTHING, but the earlier the intervention…the better.