SLP Mommy of Apraxia

Category: Apraxia

  • Am I the only one?

    “Lord woman.  We need a jet airplane, a case of wine, and a few days to ourselves.  We are living parallel lives.”

    I received this text today from a mom I have never met, but who I feel I must have known my entire life.  I found her through the marvel and wonder of the internet, and in only a year’s time, I feel I know her life story….not because she has told me, but because she too has a child with global apraxia and sensory processing disorder.  He is Ashlynn’s age, and each time I write a blog post, somewhere in Oklahoma, more times than not, a young six year old boy and his mother are going through the same things we are.

    The experiences range from the emotional joy of seeing them pedal for the first time wearing their smiles of pure joy while tears of joy run down ours……. to the mundane task of cracking an egg perfectly for the first time.

    Whatever it has been…struggling to write their name, being pegged as cognitively deficient, or being the best charmer this side of the Mississippi; our children, and now us, their mothers,  are truly kindred souls.

    Literally while I was in the midst of emailing Ashlynn’s OT explaining I want the sensory profile in her IEP on Friday to give a full picture of her attention issues and not just ADD, I receive this text from my Oklahoma friend:

    “How is Ashlynn’s attention span?”

    I knew immediately she meant her son’s sucks and she was looking to see if it was the same for Ashlynnn.  I know she didn’t say that, but I knew before she said it that that’s where it was going.

    I actually feel blessed for these moments.  In these moments when God seems to whisper, “you can do this.  You are not alone.  I am here for you.”

    Sometimes it comes out of nowhere.  Again through the marvels of the internet, I know another mommy to a child who has global apraxia, and this mommy is also an SLP!  Global apraxia is so rare, but it doesn’t seem that way when I have others to talk to.  Others sharing my exact same experience.  Somehow she always knows just what to say.  Sometimes, it’s just APRAXIA SUCKS, and it means so much more coming from her.  She just *gets* me.

    I love this quote.

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    I don’t care that I haven’t actually met either of these women face to face and I don’t care if people think I’m crazy.  Truth is, I already know them and they already know me, in a deeper way than some who see me face to face ever will….

    And one day there will be a jet airplane and a case of wine.  I look forward to it.  Until then….

  • Global apraxia, you brought your “A game,” but my daughter’s game is better.

    Global apraxia, you brought your “A game,” but my daughter’s game is better.

    My friend introduced me to an AWESOME website call “The Mighty.”  During the month of March, they challenged readers to write an open letter to a disability that a loved one faces.  I have no idea if I’ll get accepted, but hey, at least I have a blog.  For as much writing I do about apraxia, it was definitely high time to talk to apraxia myself.

    Hello apraxia.  Hello global apraxia.  It’s hard to believe we’ve never talked, especialaughlly since I’ve certainly done my fair share of talking about you.  When I gazed into my new baby girl’s eyes, and laughed along happily to her hearty giggles, I had no idea then that you were there, lurking in the shadows.

    The day I discovered you were behind the delayed motor milestones and the lack of speech I cried heavy tears and felt a weight I don’t think I quite have shaken yet.  You certainly brought your “A game” global apraxia.  I hate to admit I have felt defeated by you before.  However, you never managed to crush a small little girl’s determination, attitude, resilience and perseverence.  We are told you will never go away.  Anything requiring a motor plan will always take “more repetition than most.”  Oh how many times have we heard that?  I hated you once.  I hated watching my baby girl struggle to: speak, to jump, to ride her bike, to drink without choking. In fact I still hate you as I continue to see her struggle to: dress herself, feed herself, and write her name.  In fact, I don’t think I’ll ever quite forgive you when I think about the day she almost drowned.

    Mostly though, I feel sorry for you.  You have no more power here in this house, because my little girl has shown she can beat you time and time again.  She is a hero who wins daily, weekly, and monthly battles, and that winning is something you will never know.  Bet you didn’t expect something so strong to come out of something so small did you?   Well, we actually have that in common.  My daughter’s bramightyvery took me by surprise too.

    You will never know winning here, but because of your stubborness, we only grow stronger and more confident, knowing that any obstacle in our way can be defeated with faith, tenacity, and an unrelenting positive attitude.

     

     

  • The day the page went blank.

    I can’t remember a time since I learned to write that I stopped writing.  I was the girl with diaries, journals, writing pads, and notebooks filled with writing.  Obviously now, I continue to write.  There was a time though my writing was noticeably absent.  I recently scoured my notebooks and old blogs searching for what I wrote around the time of Ashlynn’s diagnosis and came up empty.  I had many poems celebrating her birth and first year.  One of my last poems was this:

    Angel

    They told me me you were my baby girl
    as you cried hello to us.
    I believed them at the time
    admist the chaos and the fuss.

    They told me you were my baby girl
    and when I took you home,
    I would gaze upon the sweetest face
    I had every yet to know.

    They told me you were my baby girl
    and I would gaze at you at night.
    I would watch your lips
    flash smiles radiant and bright.

    They told me you were my baby girl
    and I have so many flaws;
    and you are perfect in every way,
    they must have got it wrong.

    They told me your were my baby girl
    and my baby girl you will always be,
    but I know the truth and the truth is,
    God sent an Angel to me.

    I stopped writing shortly after this.  This was the time during  her diagnosis.  I didn’t start again until a year later when I started this blog.

    I guess I could brush it off and say I was simply too busy.  After all, I WAS working full time and then coming home each night to continue speech therapy with her.

    That’s a lie though.  As I’m three years out now and I’m meeting parents who are new to the dx, I realize the devastation and the heaviness was to much for me to even write.  To WRITE.  My outlet, my creative platform, my emotional release.  I wanted to hide it all and be strong.  I had to push forward, but as my friend Kim has said, there is always an underlying sadness threatening to break way at unexpected times.  A mix of guilt, pain, and desperation to help your child that can only be released through tears.  Tears I fought back.

    As I met a mom last Saturday, she broke down three different times.  She seemed embarrassed to say she hand’t told anyone her son has apraxia because she doesn’t want him labeled.  I totally understood what she was saying.  If you read my poem, I would suspect it’s pretty universal.  We see perfection in our child and our children, and a label means other people see something less than perfect.  It is very painful, because despite any imperfections, in a mother’s eyes, our children were “fearfully and wonderfully made.” Psalm 139:14

    I’m glad I started writing again in 2012.

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    My story, OUR story, has been one of success and triumphs.  Yes it is still of struggle, but through the struggles emerge victories, however small.  Yes there is still pain.  Gut punches from reading reports in black and white, but there is also progress and celebrations I might have taken for granted.  There are now friends I never would have met, people I never would have known, and admiration for a little five year old girl that might have never been as great.  If you talk to any mother who has a child with apraxia, they will no doubt agree that child is their

    Hero.

     

     

  • Instant connections aren’t a coincidence

    There have been times in my career that I have instantly connected with kids I first meet.  Usually, time is spent building trust and rapport, which would be expected really.  However, there are rare times when the connection is instantaneous.

    The first time this happened to me was with a Kindergarten boy who had apraxia.  He was nonverbal, anxious, and highly sensitive.  I had just come off of maternity leave, and my substitute SLP described him as not having a desire to communicate, but otherwise, she just couldn’t figure him out.

    When I walked into his classroom, he hugged me like he had known me our entire life.  I will never forget it, especially since I discovered he was not this way with ANYONE.  I felt special, and I vowed to make him feel special too.  I documented that experience in my blog post Instant Connection with Ben.

    Yesterday I met a new client who is almost 3 1/2.  I’ll call him Joe. Joe was described in the case history as friendly and social, but I was certainly surprised when I went out to meet him and he jumped into my arms.  His mom was surprised too, wondering who I maybe looked like that he knew.  Yesterday was just the initial evaluation, so I couldn’t really interact playfully with him as much as I would have liked.

    However, it made me think of Ben.  I left for another school after two years of working with Ben.  When I left, he was talking with his peers in mostly simple and some complex sentences. He had found his voice, and I knew he would be okay.  It was still hard to leave him, and his brown eyes looked so sad and worried when I told him he would have  a new speech teacher.  His parents wrote the letter that helped me get into the Apraxia Intensive Training Institute.  It was a handwritten, heartfelt letter in Spanish, and they were so worried that it wasn’t good enough.  I was so excited to tell them I had gotten in.  I always say apraxia is a journey, but it’s also a journey for the treating SLP.  We become so invested, and we frequently don’t get to see the end result.

    So here I start on a new journey with my new instant connection.  I believe instant connections happen for a reason, and I don’t plan on letting Joe down either.

     

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  • Sing, sing out loud!

    Apraxia is a journey.  Speech apraxia is a journey, but global apraxia?  Even MORE SO. So many skills to work on.  So many things to improve.  So many negative prognostic indicators to plow through.

    The good news is that Ashlynn doesn’t know anything about prognostic indicators.  She doesn’t know how heavily loaded she is in the negative column.  Not yet anyway.

    When I first had her receive services she was just under three. Her first week of Pre-K had her singing a melody similar to  the song “Baby Bumblebee” with a lot of repetitive /B/ sound combinations.  I was still able to pick up on it though.

    I remember her first real radio song that she sang.  I vowed to buy the CD back then.  Well, I never did, but I still remember the song, title, and artist like it was yesterday.

    Her current preschool teacher has been AMAZING for Ashlynn.  At parent night, she described herself as someone who puts on “A SHOW.”  I didn’t really understand what she meant, until recently.  She sets everything to song!!  Routines, concepts, new ideas….all set to melody.  Ashlynn has thrived!  She knows about hibernation, her native state of Colorado, and now the seven continents……because of song.

    Ashlynn has sang a song “What’s the matter” frequently since she started school.  That’s the only line she knew though.  Tonight we were eating dinner, and Ashlynn  just randomly busted out a “what’s the WEATHER” song.  OMG.  It’s not “what’s the matter!”  It’s “what’s the weather!!”  I figured out this time, because she sang it all the way through.

    Mommy fail.  Stupid apraxia, but Ashlynn awesomeness despite her apraxia!  Sing, sing out loud Ashlynn!

    Here is the song!  So proud of my girl.  

     

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  • Pot O’Gold Articulation Game for Apraxia

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    I was finally able to make a new game for my kiddos with enough time to spare for St. Patrick’s Day! This game follows the same idea as my other repetitive games.  Kids have a game board, in this case, a black pot:

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    The kids draw a card from the card deck.  If the card contains a shamrock with gold coins, the child collects the amount of coins shown and then practices their targeted speech sound/syllable that amount of times.

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    Some cards have surprise twists that include “snatching coins from other players,” losing a turn, or giving some of their coins to other players.

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    The player with the most coins at the end wins the game! My kids really enjoy these games and I hope kids on your caseload do too!  Enjoy!  Get it in my teachers pay teachers store for free for a short time!