SLP Mommy of Apraxia

Tag: Childhood Apraxia of Speech

  • 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.


  • Apraxia is elusive, even to professionals.

    Apraxia is elusive, even to professionals.

    Today is the second annual Apraxia Awareness Day, and in case you haven’t heard, this year it made its way into the United States Congressional Record!  That’s a big step in spreading awareness, but there is still a long way to go.

    I was able to blog about the very first apraxia awareness day here First annual apraxia awareness day and I’m so excited to be doing it again this year.

    Most people still haven’t even heard of apraxia.  Doctors, including my own pediatrician had only vaguely heard of it, and many SLP’s still don’t know how to treat it correctly.  I was one of them!  I had a 20 page small folder on Childhood Apraxia of Speech from graduate school, and that was it!  Luckily I had an amazing mentor who took me to an apraxia conference when I first started in the field, and I was able to treat the disorder successfully with the three kiddos I saw at the school-aged level.

    However, then my own daughter was born.  Her first year was stressful.  I hated the baby screeners at the doctor’s office.  She wasn’t cooing or really babbling, but she was so alert and had the best giggle!  Everyone assured me she would talk in her own time, but every screener put her further and further behind.  She crawled late, walked late, had poor balance and choked on her food and drinks, oh, and did I mention she wasn’t talking??  I attended conference after conference on early intervention for speech.  I then would work all day and then came home and used the techniques on her.  One problem, they didn’t work!!  I was stressed, worried, and constantly thinking about her development.  Even though I was treating it in the elementary school, it didn’t occur to me that this disorder was also behind her development delays.

    When I took her to Child Find I remember the evaluation like it was yesterday.  I knew she was behind, but seeing it with another SLP was heartbreaking.  I wanted to gather her up and leave so many times.  When the SLP came to talk to me, she said four words that I will never forget, and at the moment I instantly realized were true:  “Laura, this is apraxia.”

    My God.  How did I miss that???  However, I instantly knew she was right.  I was dealing with apraxia.
    Apraxia.
    Apraxia.
    Oh God no, not apraxia.  Why MY baby??  I cried in the car after the evaluation.  I sent a text to an SLP friend “She has apraxia.  I’m devastated.”

    My mother in law was watching my baby.  I went home and cried.  “Will she ever talk?” she asked.  “Oh yes” I responded.  She just has to face the biggest hills in order to do it.  I cried some more.

    I’m really not sure what’s worse.  Being a parent who doesn’t know what apraxia really is, or being a parent who knows exactly what the monster is, and just how hard she’ll have to work to overcome it.

    After the devastation….and to be honest I really did feel devastated, I mourned it, and then I became angry. I realized now why all the early intervention I was doing with her EVERY night wasn’t working!!  She had apraxia!!  Apraxia has to be treated differently.  You need a motor based treatment approach, not a language approach. Why didn’t I know the signs of apraxia in young children??  And you know what?  Once I put her with an SLP trained in apraxia, she made progress IMMEDIATELY.

    IMMEDIATELY!!

    I had a masters degree in this!!  It was unbelievable to me.  I reviewed all my early intervention conference notes and power points.  Not ONCE was apraxia mentioned.  It made me think, are early interventionists even looking at apraxia?  Why are we treating all speech delays the same way?

    After I got over being angry, I got determined.  This happened to me for a reason.  I had successfully treated two cases in the schools, but I needed to know the ins and outs of this disorder.  I’m an SLP and MY daughter had apraxia and I missed it.  I missed it!!  As I think of that right now I’m shaking my head.  That’s just not ok.  There needs to be more information out there.  It needs to be as well known to SLP’s as their everyday speech and language disorders are.

    That is my mission now.  I went to apraxia-kids.org and started signing up for webinars.  I went to every apraxia conference that came to Denver since that time, and was fortunate enough that the Apraxia National Conference came to Denver last summer in 2013.  I saw so many apraxia experts.  I found out about an apraxia intensive bootcamp.  I applied and I was accepted!  I go this July.   Last February, I gave my first ever professional presentation to a packed room of school based SLP’s.  I didn’t claim to be an expert, but I had come A LONG way since that mom crying in her car.  The interest was so great that people were sitting on the floor.  That’s how much SLP’s are craving this information.

    I asked my clinical director at the private practice to support me in my mission to specialize in apraxia.  She didn’t even blink.  I am so blessed to know her.

    I started this blog, and now I started a facebook page SLP Mommy of Apraxia.  I want to give simple tips on things to do at home, and also spread awareness.

    As for Ashlynn?  Well, she’s basically just pretty amazing.  She meets every challenge head on without
    frustration.  She overcomes every obstacle in her path, no matter how many time she has to try.  She’s speaking in 4-8 word sentences, started independently doing show and share at her school, and has many friends she plays and socializes with.  She still needs speech.  We still work everyday on correcting her errors and mapping the motor plan, but I know she’s going to be fine now. She’s not only my hero, but my inspiration and why I stand up on TODAY, May 14th for EVERY child who deserves a voice on this second ever Apraxia Awareness Day.

    Signs and Symptoms:
    – Little to no babbling
    – Only a few different consonant and vowel sounds
    – Inconsistent productions of vowel and consonant sounds
    – Disrupted prosody
    – Difficulty with co-articulation of speech sounds
    – Comprehends much more than they can speak

    Diagnosis
    – Only Certified SLP’s trained in this disorder should diagnose it.  Pediatrician’s and neurologists do not go through the extensive testing an SLP will do to provide a thorough differential diagnosis.

    Treatment
    – A motor based treatment approach to therapy must be initiated.  Therapy should be focusing on the planning, coordinating, and sequencing of speech sounds, usually with some sort of verbal or visual cueing system.
    – To find professionals in your area see this link: Apraxia Experts by state

    Most of all: Spread the Word!!  Knowledge is Power.

  • What are you doing May 14th, for Apraxia Awareness Day?

    What are you doing May 14th, for Apraxia Awareness Day?

    It’s the month of May, and in my world, that means starting to think about what to do for the second annual Apraxia Awareness Day.  Leading the movement is CASANA, a non-profit dedicated to Childhood Apraxia of Speech.  If you are interested, they have a bunch of great ideas on how to celebrate here, at their website Apraxia Kids.

    I did write to my local papers, but my favorite of all was making and seeing collages of our kids’ sweet faces and what really defines them.  In addition, everyone blogging and lighting up social media was really powerful.  You can read about my first ever one last year here: First annual apraxia awareness day!

    It was a powerful and empowering day.  I NEEDED that day.  My daughter was 3 1/2, and though she was doing great, she still struggled to talk and wasn’t talking at all in school unless she was with her SLP (speech/language pathologist).  Though we made a lot of gains that year, it was easy to get bogged down with what she “couldn’t” do, and what she still needed to work on. I was navigating this brave new world of social media, and one of the positives to come out of it was seeing all the apraxia superstars on the facebook support group APRAXIA-KIDS – Every Child Deserves a Voice.  If you are not a member and your child has apraxia, you absolutely MUST get on this page.

    The month of May I was able to see the “faces” of apraxia.  Parents could share what their child could do, and not just want they couldn’t.  Posts brought tears to my eyes frequently, and on the awareness day, I felt honored to be part of such a great group.  A slideshow of all the pictures was made and set to music. I don’t know the song, but the lyrics were “Living in the Hall of Fame, Everyone will know your name.”

    I watched it over and over, and every time I saw Ashlynn I teared up.  She wasn’t living in any other hall of fame in her own part of the Earth, but here she was a hero with all the other kids.

    So…I encourage all you moms of apraxia.  All you warrior moms.  All you worriers, sleepless nighters, criers, advocaters, non-stop tireless fighters, create a collage like this and post it to every social media at your disposal.  I guarantee, you won’t be alone, and you won’t be disappointed.  Bloggers from far and wide will be linking up!  Find and add your link here: Apraxia Link Up Let’s see the faces of our apraxia heroes!!

  • Vowel Viz Schools App Review and Giveaway!!

    Vowel Viz Schools App Review and Giveaway!!

    The people over at Complete Speech and Michelle over at Trust Me, I’m a Mom and myself all teamed up to offer you a great giveaway for the visual feedback app VowelViz!   I was not paid to review the app and am only offering my personal opinion not only as a mother with a child who has a speech delay, but also as an SLP who works with kids.

    I was really excited about VowelViz because I love visual feedback to aid in therapy. The price for this type of programming has typically been very expensive, but since tablets have made many more things easily accessible, the people at Complete Speech created a quality and affordable app that provides visual feedback for vowels and the vocalic R sound. 

    The company has offered great video tutorials to start using the app as well.   They are available at:

    http://completespeech.ning.com/tips-main

    The first thing you must do before using this app is go to settings (seen below) and play with the mic sensitivity.  Even though I watched the video tutorial, I failed to do this initially and I would have saved myself a lot of time had I remembered this step.

    Once the mic sensitivity is adjusted, you can begin using the application.  You can also adjust the vowel tail lengths and choose varying themes.  If you are an SLP, the picture above probably brings you back to your grad school days learning the vowel quadrilateral.  We don’t often reference the quadrilateral, but this is a great visual reminder of where vowels are produced in the mouth. Quadrants within the vowel quadrilateral act as relative targets and help users orient themselves to where in the mouth they should be producing the vowel. According to the website, “Learners are also able to see how their vowels compare with the researched averages of others.”  Personally, I wasn’t always exactly on the target; however, my clients and I did at least manage to hit within the range that is highlighted around each vowel.  (seen below)

    If you upgrade to VowelViz schools, there are options to vary the themes and add flash cards, which is nice.  These simple upgrades make the app more fun and visually appealing.

    My daughter and my 1st grade clients with R goals loved using Vowel Viz!  They loved seeing a visual representation of their voice and trying to move the ball into the target range.  I can see this being a great, practical tool to supplement therapy and/or provide great practice for correct production of vowels and the vocalic R. 
    For Childhood Apraxia of Speech, vowel inconsistencies are a common characteristic.  Vowel distortions make a child extremely unintelligible.  Unfortunately, vowels and the R sound are difficult to teach because there is not a specific explanation for what to do with the tongue and other articulators in the mouth to make the sound correctly.  A visual feedback tool like Vowel Viz would be helpful for the client to visually see what the tongue is doing in the mouth.

    What I don’t love:  Though the company offers incredible videos on how to use their app, I was still initially challenged to figure out the right configuration so the app would work correctly and accurately.  However, once I adjusted the mic sensitivity and played around with it more, I really started to get the hang of it and feel it can be a valuable tool at home and in therapy.

    What I love: I would definitely recommend upgrading to the VowelViz schools to get the full perks the app has to offer.  The change in themes are fun, and the flashcards are nice to have so accessible being within the app.  The vowel quadrilateral as a general frame provides another good visual feedback tool to help explain to clients what the tongue is doing in the mouth when making the vowels, and just having an affordable visual feedback tool is amazing.  I really look forward to more apps from this company, because visual feedback is so powerful in therapy.

    To enter to win this great app, click on the link below!!  Like SLPmommyofApraxia on Facebook through the link below for easy entry!   Raffle closes May 12th at Midnight.  Winners will be contacted via email and have 48 hours to claim the prize, or it will be awarded to someone else! Good luck!!

    a Rafflecopter giveaway

  • God Bless Grandma Green

    God Bless Grandma Green

    Ashlynn’s Great Grandma Green has been out for about a week now visiting. This isn’t the first time Ashlynn has met Grandma Green. She usually comes out in October each year to stay with Ashlynn’s Grandma Smith who is of course her daughter. 

    Last year she bought Ashlynn a dress for her Birthday that was purple with big colored polka dots that was instantly her favorite. Unfortunately, at that time, Ashlynn didn’t have many words. She couldn’t really express how much she loved the dress (besides pointing to it when she saw it in the closet), she couldn’t say I love you, and actually, she couldn’t say grandma and mama the same way at that time, which meant she couldn’t even expressively differentiate between any of the maternal women in her life.
    This year though, is different. Oh what a difference a year makes. Grandma Green has only been here a week, but each day I picked Ashlynn up after work, she was sitting as close to her hip as possible. Today, circumstance would have it that she could go out to lunch with just her and her two Grandma’s. When she got back, she once again kept trying to get close to Grandma Green, asking her, “Read this book?” Or “Ashlynn sit here?” She still confuses names, and in a sentence may call Grandma “Mama” or Grandma Green (Dama Deen ) “Grandma Smith (Dama Smi).” We all would have to pause frequently saying, “wait, who am I?” 
    However, there was no mistaking tonight who made a guest appearance in her nightly prayers. We usually go through and say, “God bless daddy, mommy, Jace, and Sahara.” Then, depending on the day and who she was with, I add names of the Grandparents, Aunts, Uncles, Cousins, etc. Half the time I have to remind her to include Cody and I!
    Well tonight, I started out, “God bless…..” As I waited for her to fill in the blank, out popped “Dama Deen.” I couldn’t believe it! She has never added anyone novel before without me modeling it first! Heck, half the time she forgets her parents or Jace! Well, tonight, she finally had found the words to express her love for Grandma Green, in a simple prayer to our Heavenly Father. I really don’t know how much bigger it gets than that. 
    She still has few words, but with them, she expresses profound things.  God bless “Dama Deen.”

  • Ashlynn update 3:10

    Ashlynn said her first compound sentence yesterday. It took me so much by surprise that I almost ruined it by interrupting her.

    I picked her up from school asking the usual questions and getting the usual answers,
         “How was school?”
         “Good.” (Dood)

         “What did you do?”
         “Play” (pay)

         “Who did you play with?”
         “PLAY!!” she says impatiently.

         “I know, but WHO did you play with?” I asked.
         “Evelyn (Eveyin)

    As I was about to interrupt she said,
    “She’s nice and she’s funny (sunny) too.”

    A six word compound sentence!!! Music to my ears!