SLP Mommy of Apraxia

Category: Childhood Apraxia of Speech

  • The high of summer! The fear of “back to school.”

    The high of summer! The fear of “back to school.”

    Oh summer, how I love thee. Filled with swimming lessons, play dates; visits to the park and zoo.

    During summer, I get to see my children be children. Their carefree smiles light up a room, and the echoes of their laughter can be heard long after they lay down their head. Yes, therapy appointments are a way of life for Ashlynn, but even speech and occupational therapy bring positive updates from the session and we can quickly return to our days of play.

    This summer I signed up to a few good facebook pages I found: MamaOT and Inspired Treehouse. I LOVE these pages! Instead of the packet of ideas I would get heaped upon my shoulders during the school year, these pages provide an idea a day to do with your child. Simple, easy, fun! When I just get one idea a day, the load seems MUCH more manageable. I was so inspired, I tried to do the same for speech and language on my SLP Mommy of Apraxia page, since I’m usually doing something related throughout my day with my kids since that at least, comes naturally to me. I really think they helped Ashlynn, and I felt good about incorporating some sort of speech, sensory, or occupational/physical therapy at home.

     My husband and I also saw HUGE improvements this summer in the motor realm. Ashlynn climbed a play structure that she had yet to conquer at our nearby park. Who knew how much core stability, bilateral hand coordination, and crossing midline play a part in climbing a simple play structure! Well, I’ll tell you who know.

    Parents of children who have dyspraxia!

    At the local amusement park, she was riding the tea cups independently. My husband shot a video. During the first two go rounds she was just sitting there, but by the third go round she figured out how to spin the wheel to spin her teacup! You should hear my husband cheer. Who knew how much core strength, bilateral hand coordination, and crossing midline play a part in being able to operate a simple teacup ride.

     Oh yeah, parents of children who have dyspraxia.

     However, now summer is coming to an end. I see facebook posts ripe with updates along the lines of “I’m so happy school is coming up!” Or memes like this one:

    Not me. School. Sigh. What can I say? I have a love/hate relationship with school.

     I firmly believe school helps children develop their social skills and gives them important language models, which is especially important for kids with speech and language delays. The first week my daughter went to school shortly after she turned three, she came home singing a tune I actually could decipher, and at that time she was nonverbal! That my friends, is the power of school!

     On the other hand, school brings new fears and new worries. I always thought, once she starts talking, I’ll be okay.

     Not true.

    Now I’m worried about her phonemic awareness skills, language lag, slow processing speed, and being able to write.

     My God how much do kids need to do and know now just to be ready for Kindergarten???

     I’m not looking forward to the IEP meeting, the parent/teacher conferences, the comparisons I try not to make when I’m visiting her classroom.

     Quite frankly…. It SUCKS. Apraxia STILL sucks!

     So no. I’m not ready for Ashlynn to go back to school. My SLP friend and mother to two young boys with apraxia who has a blog: Landon Journey just posted this song lyric the other day:

    If I could make days last forever
    If I could make wishes come true
    I’d save every day like a treasure and then,
    Again, I would spend them with you.

    As my brother says though, “Life’s not fair. Get used to it.”

    So farewell summer! I bid you adieu. You have been so kind to us this year. We have made castles in your warm sand, felt the glow of the sun upon our face, cooled off in your waters, and celebrated the milestones and successes at our pace. Though I’m anxious for the coming school year, I have faith you will be waiting on the other side.  Welcoming my children to your sunshine, casting light onto their beauty.

  • Early literacy skills: Print awareness activity

    Early literacy skills: Print awareness activity

    The other night I was reading this book to Ashlynn.

    If you’re not familiar with the “David” books, they center around the main character David who is mischievous and frequently getting into trouble.  
    These books are great for early print awareness!  As you can see, the print is larger and is written as though a child wrote it.  Ashlynn kept pointing out all the capital letters she recognized from her name.  Her favorite was /S/ and she would declare, “Look!  That’s in my name!”  This is great for transfer of early letter recognition skills. 
    The sentences are typically short, and contain no more than maybe 5 words per sentence.  On some pages, the words are separated onto separate bits of paper (see below).  

    The reason this is great is because you can get your child pointing to each word.  This doesn’t mean they need to be reading the word.  They just begin to get an understanding that those combination of symbols denote an orthographic representation of a word.  Ashlynn can’t read, but she is starting to get the hang of pointing to each word while she reads (from memorizing the book).
    As a bonus, the stories are relatable and entertaining to your child, allowing you work on oral language as well.
  • Summer speech with a little sidewalk chalk

    Summer speech with a little sidewalk chalk

    Looking for a fun way to incorporate some speech practice into your summer schedule?  All you need is some sidewalk chalk and your kid!

    I picked some sound combos Ashlynn is currently working on in speech and drew them in the boxes of a hopscotch grid.  We then would throw a rock and whatever the rock landed on, we would hop to that picture and say the picture.  She was so busy having fun, she didn’t really realize I was working on her /l/, /l/ blends, and /s/ blends!   Not sure if you can see here, but we have a firefly, spider, butterfly, ladybug, dragonfly, bumblebee, roly poly, star, and clouds in the sky.  

    As a bonus, since Ashlynn has global apraxia, the added jumping and keeping feet in the boxes would make any PT or OT happy too!

    Look at those good jumps!  My heart smiles at this picture because jumping did not come easy.  If you’re interested, you can read about here: Jumping on the bed

    Not to be outdone, her 24 month old brother was hopping right along too and practicing speech! Fun for everyone, and momma stays sane with kids entertained!

  • 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!!