Category: Childhood Apraxia of Speech

  • She is a fighter, not of guts and glory, but one of understated grace.

    She is a fighter, not of guts and glory, but one of understated grace.

    Well, Ashlynn completed Kindergarten.  It was pretty anti-climactic to be honest.  For some reason, her school doesn’t believe in Kindergarten graduations.  Okay, it’s not for “some reason,” it’s because the philosophy of the school is that graduations signify an end and Kindergarten is just a beginning.

    I get it…kind of.  Actually no, I don’t get it at all.  If that were the case, we wouldn’t celebrate any graduation because technically every end starts a beginning.  I don’t think that’s too philosophical.  Whatever though.

    It’s an odd thing.  When I was younger, people flunked.  I literally never hear that term anymore.  Now that I’m in education, kids are “held back” or kids are “retained” or kids are “not retained” because they are in “special ed” and you don’t “retain” if a child is in “special ed.”

    I received Ashlynn’s report card.  When I was little, I LOVED that little manilla envelope.  It was a little pocket that guaranteed me lots of praise from my parents….maybe even a trip to Dairy Queen.

    I looked at it now in her backpack with dread.  What would it possibly say? I know it didn’t say she flunked.  She’s in special education and she won’t be retained.  However, I know it didn’t say she was on grade level either.  If that were the case, she wouldn’t be in special education.

    Sigh

    I debated not opening it.  What does it matter?

    I let it sit for awhile.  I pulled it out, but didn’t open it.  Instead I looked at the pages and pages of work sent home in her backpack that she had done from the Fall to the Spring.  Progress.  Amazing progress.  Pages and pages of hard work rested under my fingers.

    Math:

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    Really though, writing these numbers is not just math…it’s an occupational therapy success.  Ashlynn has just as much difficulty learning to write because of motor planning difficulties, as she did to speak.  Despite knowing how to write an S for awhile now because it’s in her name, she frequently writes a number 2.  That’s just one example of many.

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    Everything else!

     

    Drawing and writing:

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    Fall 2015
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    Spring 2016

    As much as these pictures make me burst with pride…there is an underlining sadness….guardedness.

    When I first started as an SLPA ( Speech/Language Pathologist Assistant), one of my supervising SLP’s showed me a book.  The book described how children’s drawings correlate to IQ.

    The above pictures show Ashlynn’s progression.  Before I had Ashlynn, I didn’t realize picture drawing could be a measure of disordered motor planning  and NOT IQ…as in her case.  That last picture is after intense intervention.

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    This last graph looks impressive right?  It IS impressive.  However, it represents the “sight words” Ashlynn learned throughout the year.  When she started, we were still working on identifying uppercase letters, so she made progress on that…but yeah…sight words are going to take a back seat.   She is still abysmally behind where she should be….but if one considers where she has come, it is impressive.

    Ashlynn wasn’t even talking three years ago, so of course, everything else is going to take some time.  The point is though…the most important aspect is that….

    Ashlynn ALWAYS grows.  She ALWAYS progresses.  She was born behind the eight ball.  SIGNIFICANTLY behind the eight ball, but that girl doesn’t give a shit about analogies…or about pool for that matter.  All she does is: WORK

    She WORKS

    Her report card wasn’t terrible.  I really appreciated how throughout the report card they noted Ashlynn works hard and that she made great progress.  So, that’s where we are at.

    One day, when (if) Ashlynn ever reads all I have wrote, I hope she remembers this:

    You are a fighter, but not one of guts and glory, but one of understated grace.  Despite any challenge, you have never wavered from achieving your goals.  I watch you day after day and see how badly you want to read, write, draw, dance and skip.  I don’t know these things because you tell me with loud words and fists banging on the table.  I know these things because I watch  your tireless and humble pursuit of them.

    When you have earned prizes for behavior, you choose books, cards, sticky notes and journals.  You spend your time cutting and writing at your craft table, even though much of what you write is still not legible.  It never deters you.  It never distracts you from your goal.

    At night, you always have cards, papers, or books in your hand.  I come in before bed and place them on your nightstand so you have a place to sleep.  You “read” your stories to your stuffed animals that you call “friends” while your finger tracks words you still can’t read.

    While other children rejoice for the break that is summer, you ask daily when you will go back to school, to first grade, to be exact.  You cheer when I announced we would do homework every morning before we go out and play, and you diligently trace and write your name and letters, making numerous errors despite years of OT now.  I watch you smile and laugh away your mistakes, so forgiving of yourself as you smile and say “oops, I messed up. Let’s try that again.”

    So Ashlynn, if you remember anything in this life, remember where you have come and where you are now.  Remember that where you began, or even where you are at when you read this someday, is NO indication of where you will end up.  Remember that though you are small and sweet, your heart beats the beat of a true fighter.  You are courageous, strong, and brave in the most beautiful of ways.  Humble, kind, and forgiving, even of yourself…..something most adults have yet to master.

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    I used to care about failing before I had you.  I was a perfectionist and never wanted to take risks.  You make me realize though, that if we don’t take risks, we never succeed either.  We merely exist.  My life is more amazing now that I take risks.  I don’t fear failure because like you, I can always try again.  Watching you go to battle everyday leaves me with sorry excuses if I don’t do the same.  

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    Your report card means little to me.  I’m not sure if I’m finally starting to accept the numbers or I’m just having a good night, but it didn’t ruin me like it used to.  Maybe that’s because I see you and I know you will succeed, and Ashlynn, I will do everything in my power to help you.

     

     

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  • Our kids need to meet others just like them.

    Our kids need to meet others just like them.

    This 4th Annual Apraxia Awareness day (it was trending, did you hear?), I organized a fundraiser at a local Chipotle to benefit the Walk for Childhood Apraxia of Speech.  I have a HUGE goal of 30K.  The walk last year made 16K, so basically I set this goal to double that.

    I’m probably crazy, but I set that goal with good reason.  That number ensures a visit for a free parent seminar given by the executive director of apraxia-kids.org (CASANA).  I was the lucky recipient of her visit one year and it was amazing.  The previous walk coordinators had amazing connections and one coordinator raised thousands of dollars just from his connections.  I don’t have anywhere near those connections, so I’m trying to do more fundraising activities to help raise money and get us closer to our goal.

    We had a really good turnout yesterday, with around 50-60 people gathering in South Denver.  One mom even drove close to an hour and half to be there, because she wanted to meet other parents in her shoes going through the same thing.  Social media has made it so we can connect with other parents and families, but of course, there is something different to have a face to face connection with a person who truly “gets” you.

    Last night was interesting, because the kids with apraxia seemed to become instantaneous friends.  You could honestly not help but notice them gravitate to each other and form an immediate kinship.  They were holding hands and had created their own “walk for apraxia” by walking continuous circles around the tables. There was chatter, but there was more laughter, smiles, and pure happiness.

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    Ashlynn holding the 2016 Colorado Proclamation declaring May 14th Apraxia Awareness Day in Colorado

    I was surprised to see a bossy side to my daughter Ashlynn.  Most girls her age have a bossy side, but Ashlynn is always the follower at school.  She has friends and is well-liked, but she is far from being a leader.  You wouldn’t have known it last night.  She was telling people to hold this hand and to walk this way.  She was sweet and smiling of course, but still bossy.  I told one young client of mine to tell her stop being so bossy.  He looked at her and told her “no” through a smile, and she laughed and moved on, only to return again requesting him to follow her.

    The mother of a second grade client came up to me and told me that her son listened attentively to all of the kids and had a look on his face that seemed to say “ohhhh, I get it.”

    And that’s when it dawned on me.  Here we all were, parents, networking with other parents.  Happy to talk and chat to others going through similar experiences.  An instant friendship is formed between the parents.  Without saying anything, everyone seems to understand you so perfectly, and I realized…as I watched smiling face after smiling face, and small hand locking another small hand……that the KIDS had formed their instant connections too.

    A famous actress Gage GoLightly shared a facebook post spreading apraxia awareness thanks to my friend and fellow apraxia advocate Michelle Leigh who discovered it on wikipedia and succeeded in bending her ear.  Anyway, her post outlined how she grew up with apraxia and dyspraxia, but implored people:

    If you know someone in school, or work who has apraxia, or dyspraxia- make today the day to reach out and just talk to them. Underneath everything in the end we are all just people. We all have our unique challenges and special qualities that make everyone incredible. Love and acceptance are what make this world beautiful. Reach out and be apart of the beauty.

    I realized it’s important these kids meet other kids with apraxia.  That they not only meet them, but get a chance to interact with them.  We need it, why wouldn’t they?  I love a quote by C.S. Lewis I reference frequently in my apraxia journey:

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    No one could deny the instant connection these children had.  lt made me realize they need to get more opportunities to meet others who have the same disability.  It was absolutely beautiful to witness.  I wish I had taken more pictures.  I probably only captured a third of the kids holding hands with each other.

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    I’m urging you all for so many different reasons to get out and support the walk, go to the walk, and participate in the fundraisers.  It’s for so much more than raising money.  If you don’t believe me, just look at the smile on your child’s face when they can also finally meet another and say without words, “me too.”  As Gage said, “reach out and be part of the beauty.”

  • GIVEAWAY!! Apraxia Picture Sound Cards app!

    GIVEAWAY!! Apraxia Picture Sound Cards app!

    Have you heard?  Today is #ApraxiaAwareness Day and we are trending on Facebook!

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    To celebrate, Lynn Carahaly, creator of the Speech EZ program for apraxia agreed to offer THREE copies of her Apraxia Picture Sound Cards App!  The giveaway starts today and winners will be announced May 29th, 2016!

    download

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    Enter below for a chance to win!
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  • Here’s How to Treat Childhood Apraxia of Speech

    Here’s How to Treat Childhood Apraxia of Speech

    Have you heard?  It’s #ApraxiaAwareness Day and #Apraxia is trending!

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    In honor of all of the festivities, Margaret D Fish, author of “Here’s How to Treat Apraxia of Speech” is offering a free copy of her book to one lucky winner!   Enter today and the winner will be announced next Saturday!

    *Note: This giveaway is now closed*

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    Enter below!  Good luck!

     

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  • Serendipity, coincidences, and Childhood Apraxia of Speech

    Serendipity, coincidences, and Childhood Apraxia of Speech

    I just gave a talk at Bowling Green University this past week.

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    The NSSLHA crew at Bowling Green State University!

    Since the talk was to undergrads, I talked about my serendipitous journey to becoming an SLP, and why I am a firm believer in listening to “coincidences.” The talk then culminated with my story about meeting Ronda Rousey.

    For my final slide, my takeaways were to believe in serendipity and to listen to coincidences.  Life is more eerily connected than people think.  Another perfect example happened tonight, but before I talk about tonight, it’s important to take you back to 2005.

    Serendipity and coincidence found me in an SLPA (speech/language pathology assistant) position under the tutelage of an SLP named Deborah Comfort.

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    Deborah is on the right with a good friend and SLPA Pearl on the left

    In 2005, I was starting my first year of graduate school thanks to her unrelenting push and unwavering belief that I should become an SLP; something I never planned on doing.  That year, a 1st grade boy with apraxia showed up on her caseload and she wanted to refresh her knowledge.  Knowing that kids with apraxia need more frequent therapy, she put the child on 3x a week, and I was partly assigned to her so I could provide the 3rd day of therapy, since she was only in the building 2x per week.  She asked the principal to pay for an apraxia workshop coming to Denver and also requested I go as well since I would also be seeing the child.  That workshop was given by Ruth Stoeckel out of the Mayo Clinic in Minnesota.

    Fast forward to today, April 24th, 2016.  A little over 10 years later.  I have now have a daughter with apraxia and Deborah Comfort is her private SLP.  Ruth was back out in Denver today because she is giving a talk to Children’s Hospital tomorrow, and I found myself at her hotel with my daughter Ashlynn.

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    How bazaar is that?

    Pretty bazaar if you don’t believe in serendipity or listen to coincidences.

    I met Ruth again when she was in Denver in 2013 for the Apraxia National Conference.  I remember going up to her, stammering about how much I appreciated her and all of her work.  She was having wine with friends and smiled politely at me before saying thank you and returning to her conversation.

    Embarrassing!

    That wasn’t the last I would see of Ruth though.  I learned about CASANA’s apraxia intensive training institute while I was there, and (coincidentally) was accepted.  Guess who was my mentor?  Yup.  Ruth.

    Since that time she has entertained all my emails I have sent her that have had videos of Ashlynn accompanied by a paragraph of symptoms related to another neurological disorder called dysarthria.  Ruth is not only an apraxia expert, but working at Mayo she is an expert in motor speech disorders, of which apraxia and dysarthria are both.  I have always thought Ashlynn had dysarthria, but I have only known one child with it and he didn’t have apraxia.  Ruth would know for sure.  Ever the expert though, she would refrain from giving any sort of diagnosis over video.

    A few months ago, after I sent her yet another question, she told me she would be coming to Denver again in April and would be willing to see Ashlynn while she was here.

    The verdict?

    Ashlynn has oral and verbal apraxia haha.  Yes, I just laughed.  Four years ago, I cried at that diagnosis.

    What a difference those four years made.

    She has expressive language disorder (yep) and word finding difficulties (double yep).
    Ashlynn also has mild dysarthria.  I nodded my head.  I knew it all along.  I just needed it confirmed by an expert who had actually seen it before in a child with apraxia.

    Dysarthria is a tricky disorder.  It can manifest in many different ways and in many different speech subsystems.  In Ashlynn though, it is the cause for her messy eating, difficulty with managing her saliva, especially when she’s talking and it pools at the corner of her mouth, and some overall imprecision in her speech.  Those are HER symptoms.  However, that doesn’t mean every child who presents like that has dysarthria. (just my qualifying statement.  Don’t dx over the internet!).

    The treatment approach really isn’t that different at this point.  Although, I did get GREAT tips for her residual errors.  Ruth recommended to work on her residual artic errors now (even though language is a concern and seems to be the priority), because kids like Ashlynn are only getting these plans further ingrained in their system.  That means I need to start working on the lisp now.

    All that aside though, think about this for a minute.   Humor me, if you will.  More than ten years ago, I met a woman who would become my future daughter’s SLP.  My future daughter, would have apraxia, the same disorder I was helping her future SLP treat in a young child, which brought us to a workshop given by Ruth Stoeckel, who is now seeing my child and is determining if she also has dysarthria.

    Maybe it’s just me, but that seriously blows my mind.

    What would I have said to 24 year old Laura?  Childless Laura.  Not yet an SLP Laura. Had I visited her from the future, could she have ever believed me if I told her she WOULD go to grad school some day.  She would have a child, a child who would have apraxia.    A child who, some ten years later, would be seen by the very expert giving a talk in the room she was in where she hearing about apraxia for the first time.  A child who would be seeing the SLP sitting next to her on a weekly basis.   That SLP, the sole person responsible for getting her (Laura) to college to get a degree in speech/pathology when she had NO intent of getting that degree.

    I’ll say it again.  That seriously blows my mind.  I’ll quote Albert Einstein again,

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    Yes.  Life is more eerily connected than we think.

    If you follow my blog, you know now even more why I don’t believe in a coincidence, and why I went and met Ronda Rousey that fateful day.

    I leave you with what I left the undergrads at Bowling Green:

    • Believe in serendipity
    • Listen to coincidences…and
    • “When it comes to challenges, I honestly believe that things happen for a reason,” Rousey said. “At the time, yes, it’s hard on a personal [and] emotional level, and it’s hard to look past what’s happening to the future; but you have to believe in yourself – because down the line in two, five, ten years’ time, you’ll look back and think that was actually the best thing that ever happened to me.”
  • The Do’s and Don’ts of in-home speech therapy

    The Do’s and Don’ts of in-home speech therapy

    Being both an SLP AND a mother to a child with a severe speech disorder, I have this unique and sometimes bizarre perspective; that perspective, of course, being that I now intimately understand both sides.  That being said, I think parents/my clients, typically feel more comfortable telling me things parent to parent vs. parent to SLP.

    As a mother now to a child with apraxia, I have a new appreciation for the “other” side.  This post is targeted for all the amazing and well-meaning SLP’s out there, who may not understand some things because they haven’t been on the parent side.  Here are my top five Do’s and Dont’s for in-home therapy.

    Don’t spend therapy time talking about your wedding, the death of your dog, or your friend’s miscarriage. Do spend the therapy session focusing on the child and reserve personal conversations for a time outside the therapy session.

    Many times, our client’s mothers may have a lot in common with us.  However, literally every minute of therapy is as important to a parent as it is to the child.  I remember watching the digital clock in the first speech room Ashlynn was in.  If the SLP had to use the bathroom before seeing Ashlynn, I would of course understand; but honestly, I was staring at the clock hoping she didn’t waste too much of Ashlynn’s time.  I currently have a client who put those minutes into dollars.  For a 30 minute session at $50,  a person is paying almost $2.00 per minute!  We pay because we know they are valuable, but please, make sure all the minutes count.

    Many parents have told me that at times, they have been at fault for wasting minutes talking because they were with kids all day and craving another adult interaction; however, regardless of whose fault it is, always try to stay professional and keep the focus on the child.

    Don’t blurt out suspicions, concerns, or think out loud.  However, do make sure you make referrals and not withhold information if you feel there are additional concerns that need to be addressed.

    Parents have reported that therapists have flippantly mentioned apraxia and turned their world upside-down unnecessarily, only to find out later it was in fact, NOT apraxia.  In a different scenario,  I have had parents upset that an SLP never even mentioned apraxia, and now they were just finding out years later, distraught, worried, and feeling guilty they had not done something sooner; and in yet another scenario, a parent has told me her SLP casually mentioned a serious diagnosis like apraxia frequently without ever moving forward with a different treatment plan.

    As an SLP, you have a responsibility to relay a suspected dx in a responsible manner; and if you don’t know what to do, it’s your job to figure it out or make a referral.  There are so many more resources available now including apraxia-kids.org or ASHA’s practice portal.  We are counting on you!!

    Don’t start planning your lesson when you enter the house. Do have a plan heading into therapy.

    Look, as an SLP I get it. Planning time isn’t exactly built into our pay.  Also, it can get overwhelming to carry a bunch of materials from house to house.  Shouldn’t we be teaching the parent how to use toys in their house?  Yes, that’s great, but you should STILL have a plan whether it’s using a child’s toys or your own.  Nothing looks more unprofessional than spending five minutes letting the child decide what toy or game to play. Remember my previous comment?  The parent just paid you almost $10.00 now just to plan the lesson and get started.

    If you are in early intervention, some of your time might be for planning and writing notes.  If so, please explain that to a parent before-hand so they aren’t thinking you are deliberately short-changing a session.

    Don’t continually cancel or run late.  Do respect people’s time and schedule, and refer out if you are unable to be a consistent provider.

    Okay, first of all, if you are consistently late or cancel a lot, you make the profession look bad.  However, even more important is that you are not helping the child the way you should when you do this.  Be conscientious, and if you are frequently late and/or cancelling, refer out.

    A parent also told me that a quick apology is nice, but an entire explanation is not necessary.  Parents do understand if you are late sometimes.

    Don’t assume parents aren’t worried, involved, invested, or not working with their child. Do provide resources, assume the parents are doing the best they can with the knowledge and tools they have, and that they are worried and just want the best for their child.

    I had a post last year entitled Nature Versus Nurture.  In it, I beg SLP’s not to assume nurture played more of a piece in a child’s language delay.  This is especially true for apraxia of speech.  I’m an SLP.  A pediatric SLP.  My daughter has a great language rich environment, and not only that, I DID work with her almost every night on speech.  Guess what?  She STILL had apraxia and continues to have a persistent receptive/expressive language delay.

    Parents are human too, and might not have the background we have in child language development. Please do not assume though, that they don’t care.  Even parents who seem like they don’t care, care….trust me.  If you are there, it’s because they care.  They had to make the phone call after all.

    The best thing you can do is not only to provide therapy, but provide them with resources.  Some parents may not use the resources, but I think it’s our job to provide them.  Give them articles, handouts, point them to online resources, support groups, walks, conferences, etc.

     

    Most of all, DO realize you are appreciated and valued more than you may ever realize.  Helping a child get their voice is one of the most amazing things I think we do as SLP’s.

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    Thank you to all the parents who added their feedback to this article.  

    LAURA SMITH M.A. CCC-SLP IS A SPEECH/LANGUAGE PATHOLOGIST IN THE DENVER METRO AREA SPECIALIZING IN CHILDHOOD APRAXIA OF SPEECH.  CASANA RECOGNIZED FOR ADVANCED TRAINING AND EXPERTISE IN CHILDHOOD APRAXIA OF SPEECH, SHE SPLITS HER TIME BETWEEN THE PUBLIC SCHOOLS AND THE PRIVATE SECTOR.  SHE IS DEDICATED TO SPREADING CAS AWARENESS. HER PASSION IS FUELED BY ALL OF HER CLIENTS, BUT ESPECIALLY HER OWN DAUGHTER WHO WAS DIAGNOSED WITH CHILDHOOD APRAXIA OF SPEECH.  FOR MORE INFORMATION VISIT SLPMOMMYOFAPRAXIA.COM