SLP Mommy of Apraxia

Category: dyslexia

  • Apraxia as a symptom to a bigger picture

    Apraxia as a symptom to a bigger picture

    When I started out on this journey, having my daughter receive the diagnosis of Childhood Apraxia of Speech was devastating.  Unlike other parents who might have needed it explained or who turned to google and realized it is a lifelong neurological disorder, being an SLP I already knew that.  My mind flashed to two boys I treated prior to Ashlynn when I was a school SLP, who both entered Kindergarten nonverbal and I was terrified.

    After I threw myself a pity party, I picked myself up determined to attack the beast named apraxia.  At the time as we were going through it, I did not fully grasp as I do now, the fact that most kids with apraxia will not only hold that one label.  I did not fully realize that most kids with apraxia, a neurological speech disorder, will also have co-morbid neurological disorders as well.

    As a professional SLP specializing in the field, I have a current private practice caseload of around 35 kids.  There is not one who doesn’t have another co-morbid condition.  Friends, I have to repeat that because it is important.  There is not ONE who only has apraxia.

    I feel now like this is an important topic to discuss because I don’t know about other parents, but for me I would have wanted to know up front that a diagnosis of CAS meant I was going to be dealing with more than CAS for the long haul.

    Why?  What does it matter?  You take each diagnosis day by day right?

    I struggle with this.  Part of me agrees but then part of me just wishes I had known the statistics were as high as they were for the chances that my daughter would have dyslexia, or ADHD, or SPD.  I say this because honestly, had I just known up front all of that was a possibility, I could have:
    1. Been more vigilant and more proactive about potential comorbidities
    2. Not been so devastated each time a new one popped up.

    In the post on ADHD I wrote:

    I know it’s a little too young to diagnose ADD, but I hope to God she doesn’t have that too.  She doesn’t deserve this..any of this.

    In the post on Dyslexia I wrote:

    In that moment, my dear readers, I had the same gut feeling I had when that SLP told me back when Ashlynn was 2:11 “Laura this is apraxia.”  In that moment, that article told me, “Laura, this is dyslexia.”  I started to cry at the end of that article.  Damnit.  I missed it again.  I missed another OBVIOUS dx in my OWN daughter.  Why does this keep happening??  What good was all my training and experience when I’m not applying it to my OWN baby??

    Ashlynn has a slew of other diagnoses as well, and EACH time I went through this process AGAIN.  I had to relive the pain of a diagnosis AGAIN.  I guess I can’t say if the pain would have been any less had I known all of these diagnoses were more of probabilities that possibilities, but I honestly think it wouldn’t have made each new diagnosis as gut wrenching.

    I was talking to Lynn Carahaly the other day, creator of the Speech EZ program for apraxia and apraxia expert out of Arizona,  and she said the following,

    Over my career specializing in the disorder, I definitely feel apraxia is rarely the primary issue, rather a sequela to a bigger picture.  The problem is SLP’s and parents are so focused on the speech and not looking at the big picture in early development.  There is this thinking that if we could just overcome the apraxia, everything will be OK.

    I let out a big sigh after reading that.  Anyone else who felt that way, will you raise your hand with me?  I fell into that category.  I was so convinced if we could just fight and beat this beast called apraxia, everything else was going to be okay, and man I was wrong.  Consequently, each new diagnosis brought this sense of total indignation.  We fought apraxia and WON!!  Why now did she have to deal with something else?

    I take a different approach now with my clients.  I am completely honest and transparent about the potential for co-morbid issues.  In fact, I told one mother the other day,

    Your daughter is at risk for dyslexia.  I recommend that for now we operate under the assumption she might have it and get her started early with pre-literacy and phonemic awareness activities; and if she doesn’t have dyslexia, we celebrate.

    I’m just giving parents, and now all of you, what I personally would have wanted to hear.  Lynn is right, and that’s why her program incorporates so many pre-literacy elements.  Let’s start looking at apraxia as more than just a speech disorder, and let’s celebrate if the child did indeed only have apraxia.   Once I started connecting with parents of kids who have global apraxia, only then did I realize every child with global apraxia had a co-morbid diagnosis of ADHD.  The same was true when I found the apraxia-kids facebook group and realized just how many kids with apraxia also had Sensory Processing Disorder!  Oh, and when I found out that and started talking to my global apraxia friends, just how many kids with global apraxia had a similar and rare presentation of sensory processing disorder in that they had a high tolerance for pain and an “under-responsive” tactile system!

    Parents and professionals, the moral of the story is this.  In most cases, apraxia is just a foreshadowing of additional neurological conditions to come.  There are many, MANY, combinations it would be impossible to predict at that initial CAS dx.  Dr. Ruth Stoeckel did a talk at one apraxia conference titled “Co-Occurring Diagnoses: Other Letters that may go with CAS.”  There are MANY other conditions that can and DO go with CAS.  I think it benefits parents and professionals to know we are dealing with just the beginning of what is probably a very bigger picture.

     

    Resources:

    Duchow, H., Lindsay, A., Roth, K., Schell, S., Allen, D., & Boliek, C. A. (2019). The co-occurrence of possible developmental coordination disorder and suspected childhood apraxia of speech. Canadian Journal of Speech-Language Pathology and Audiology.

    Iuzzini-Seigel, J. (2019). Motor Performance in Children With Childhood Apraxia of Speech and Speech Sound Disorders. Journal of Speech, Language, and Hearing Research, 62(9), 3220-3233.

    Langer, N., Benjamin, C., Becker, B. L., & Gaab, N. (2019). Comorbidity of reading disabilities and ADHD: structural and functional brain characteristics. Human brain mapping, 40(9), 2677-2698.
    Lewis, B. A., Freebairn, L. A., Hansen, A. J., Iyengar, S. K., & Taylor, H. G. (2004). School-age follow-up of children with childhood apraxia of speech. Language, Speech, and Hearing Services in Schools.
    Miller, G. J., Lewis, B., Benchek, P., Freebairn, L., Tag, J., Budge, K., … & Stein, C. (2019). Reading Outcomes for Individuals With Histories of Suspected Childhood Apraxia of Speech. American journal of speech-language pathology, 1-16.
    Teverovsky, E. G., Bickel, J. O., & Feldman, H. M. (2009). Functional characteristics of children diagnosed with childhood apraxia of speech. Disability and Rehabilitation, 31(2), 94-102.

     

    Laura Smith, M.A. CCC-SLP is a 2014 graduate of Apraxia Kids Boot Camp, has completed the PROMPT Level 1 training, and the Kaufman Speech to Language Protocol (K-SLP). She is the author of Overcoming Apraxia and has lectured throughout the United States on CAS and related issues. Currently, Laura is a practicing SLP specializing in apraxia at her clinic A Mile High Speech Therapy in Aurora, Colorado. 

  • Report cards are bittersweet with special needs

    Report cards are bittersweet with special needs

    End of the year is here! Summer is around the corner and the excitement of summer is palpable. There is something else though that is tangible I hold right before the excitement of summer.  It’s a small manila envelope that holds the children’s report cards.

    When I was a kid, I LOVED report card season.  My report card was always glowing.  I couldn’t wait to take it home and show my parents who would shower me with accolades and possibly reward me with ice cream.  I could not WAIT to open up that envelope and see the delicious and positive contents hiding inside.

    Ashynn, my first born child with apraxia and related learning disabilities was the second time aside from myself that I had looked at report cards.  I remember opening up her first one and feeling like someone had sucker punched me.  Despite her working hard every night, and going to therapy almost every night, the scores were more than concerning.  The grades were absolutely devastating.

    Yes I KNEW she has on an IEP. Yes I KNEW she had a modified curriculum and the report card shows her performance based on same aged peers.  Yes, I KNEW that.  It didn’t make the blow any less intense.   How was it fair?? While other kids played soccer or did gymnastics, mine spent every spare minute in a therapy and yet she was still behind.  Again I ask you, “How is that fair??”  As she went through first grade I started taking longer and longer to open that envelope.  You have to work up to putting yourself through that kind of pain again.

    Ashlynn is in second grade now.  Her manila envelope aka report card was sent home first.  I saw it in her backpack. Yes, I saw it.  I never pulled it out.  Why would I?  I know what I’m going to see.  I’m going to see that in spite of the fact that she has therapy after therapy and tutoring after tutoring after school; she remains dificient in most areas of her life. Despite her positive attitude, her resiliency, and her stellar attention to task and work ethic in therapy…she has true disabilities that will persist throughout her entire academic career and will be highlighted by the scores on her report card.

    Yeah so that report card. It kinda makes me sick.  I have to work up to reading it and it usually takes a couple of weeks.

    One day later a same manila looking envelope ended up in my son’s backpack.  I found myself excited and ready to tear into it!  I had a hard time waiting until we drove home.   I was over the moon to read the narrative,

    “It has been a pleasure to be Jace’s Kindergarten teacher.  He is outgoing, inquisitive, and comes to school excited to see his friends. He is a hard worker and determined to do his best. He takes great pride in his work.”

    I looked at the description with awe.  The same could have been written about my daughter with disabilities, yet, this person, MY SON, had scored all three’s (A’s) and my daughter still remained far behind.

    My daughter is outgoing, inquisitive and loves to see her friends too.  She is a hard worker and is determined to do her best.  She takes great pride in her work too.

    The next morning I received a text from her special education teacher.

    “Did you read A’s Progress Report yet???”

    I had been caught.  I felt ashamed, but I wrote back honestly and said,

    “Looking at her report card is so painful I have to work up to looking at it.  It usually takes a week or more.”

    She wrote back that after her IEP in March she had completely revamped her programming and she encouraged me to look at it.  I thanked her and sighed a heavy sigh.  I wanted to see all the progress which would be on the special progress reports that are added to the report card based on her IEP (Individualized Education Plan) goals, but I would have to look at the report card too which I knew still had low scores.  I looked at the two manila envelopes lying on the floor in the living room.  One opened, and one un-opened.  I want to read all the wonderful progress, but I’m just not ready to get punched in the gut today with the other papers sitting behind it.

    Not yet.

    I will.

    I promise I will.

    I just can’t face it yet today.

  • Diagnosis, Disability, and Finding your Tribe

    Diagnosis, Disability, and Finding your Tribe

    ​Parenting children is hard.  That isn’t a secret.  Parenting a child with a disability has even extra challenges that shake us to our core.

    I have a daughter with special needs and numerous learning challenges.  When she was almost three, she received her first diagnosis of Childhood Apraxia of Speech, a rare and severe speech disorder in children.  That was the beginning of many a “dark day” in my parenting journey with her.  I remember putting her in her car seat, tears in my eyes as her bright blue eyes smiled back at me and seemed to ask, “why are you crying?”  I sobbed that day.  I cried for so many reasons.  Fear, uncertainty, guilt and confusion.  I texted a friend I was devastated, and I truly felt like I had the wind knocked out of me.

    Slowly I found a community of parents who had children with apraxia as well; and I started to feel hope again.  I started to believe what was possible for their children was possible for mine as well.  I found my tribe, as I like to say.  All these parents understood me, my daughter, our challenges and the significance of our small successes!  I discovered there was a walk to honor kids like mine and spread awareness.  I connected with others in my community and no longer felt alone.  I no longer felt devastated but instead felt blessed by the friendships I had formed.

    My daughter has went on to receive multiple and additional disabilities since that first one of apraxia.  I can’t lie.  Each new diagnosis, report, or low test score feels like a punch in the gut all over again.  However, we have our people now.  We have our tribe.  We have others who understand.  They understand that sometimes you are in such a state of deep grief you can do nothing else but cry and cannot face the world that day.  We also know that stage doesn’t last, and when a member of our tribe is down, we will rally around them and be ready to pick they back up when they are ready to face the day again.

    I learned that some of my darkest nights were followed by the most glorious sunrise; and I found that sunshine in the community around us.  No one should suffer alone.  No matter the struggle, we should all find others who understand our unique situation in the world.  For us, community was the light that found its way into the dark tunnel of grief and showed us the way out.

  • SLP Mommy Top 10 posts of 2017

    SLP Mommy Top 10 posts of 2017

    I started this blog in 2012, shortly after my daughter’s diagnosis of apraxia when she was just under three. Since that time, she has made tremendous growth.  She speaks, she speaks clearly, and she can tell me about her day. She can tell me when people are mean to her, what her teacher said that was funny, and what she had for lunch.  These were all things she couldn’t do and I worried she would never be able to do when she was first diagnosed.

    We’ve added more diagnoses through the years including a language disorder, dyspraxia, ADHD, dysarthria, and this year….dyslexia.

    In spite of all of these challenges, watching my now 8 year old daughter wake up each morning and attack the day with happiness, kindness, bravery, and a resilience that is unmatched inspired me to do the same.  I always think, I have NONE of her issues….what’s my excuse?

    This blog/website has grown with an average of 300 visitors daily.  Whether you are a professional, parent, or just someone who cares, thank you so much for following along and being part of my desire to spread apraxia awareness in the hopes of helping every child with apraxia to achieve intelligible speech.

    Here is the Top Ten Countdown to my most read posts of 2017.  Cheers to 2018!

    10. As children walk to find their voice, local news outlets stay silent.

    “I have to say I want to give up sometimes.  It seems like no one is going to care and sometimes the fight just doesn’t seem worth it anymore.  But then I look at these smiling faces who never give up, and like the song says, I need to get up again to see what’s next.”

    9. It feels like home this year: Apraxia Conference 2017

    “Have you ever stopped to think, and then believe, that one person, ONE, could change the life of hundreds; if not thousands, if not millions of others?”

    8. Whatever it takes: A day on the brink.

    “She’s finally in bed. I have the song “Whatever it takes” on again.  Tomorrow is a new day.”

    7. It’s like juggling 8 balls and desperately hoping one doesn’t roll away. 

    “Sometimes I wonder what it would be like to just worry about the speech, or just worry about the motor skills, or just worry about homework or just worry about executive functioning, or just worry about language processing.”

    6. It’s rare so no one cares? Prevalence of CAS.

    “Would it surprise you then if I told you the prevalence rates for Down Syndrome are 1-2 children in every 1000 births.  Sound familiar?  Maybe that’s just because I just wrote that figure for CAS.”

    5. “She’s a puzzle” or…she has dyspraxia.

    “I don’t want professionals to tell me she’s a puzzle.  I don’t want to know that she’s so unusual that her very being challenged your knowledge, or that you are confused by her.”

    4. No, not another diagnosis.  Adding dyslexia to apraxia. 

    “In that moment, my dear readers, I had the same gut feeling I had when that SLP told me back when Ashlynn was 2:11 “Laura this is apraxia.”

    3. The Hulk and Rousey on struggling to speak.

    “Everyone is handicapped either physically, mentally, or emotionally.  It’s all about maximizing what you have.  As a kid I had trouble speaking.  It’s all about overcoming adversity.”

    2. Apraxia, special ed, and grad school.  One woman’s remarkable tale.

    “Whatever you accomplish in life will be perfect, as long as you keep loving yourself for who you are.”

    1. The Problem with School SLP’s

    “They cannot “refer out” or “discharge for lack of progress” as an can be done in private speech. No, the school SLP is expected to figure it out regardless of the lack of resources, lack of funding, or lack of time.”

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  • Happy 8th Birthday Bug Bug.

    Happy 8th Birthday Bug Bug.

    [wysija_form id=”1″]Mr. B,  here is your beautiful baby girl.

    My dad would say this to me EVERY birthday.  I’m not exaggerating.  I was born 10 year after my sister, and it wasn’t customary to hand the baby to the father so early; so when my parents had me and my dad held me for the first time, this phrase was forever burned into his mind.

    My due date was October 16th.  The four days following my due date were excrutiating.  I wanted to meet you so bad Ashlynn.  Each day passed and  you still didn’t come.

    It was a Monday night football game on the 19th of October, 2009. I was having Braxton hicks contractions like I had had all month, but this time I was distracted by the Bronco game!  I paced up and down the hallway trying to forget the pain as I cheered on our home team.

    When the game ended, the contractions were intense but erratic.  Being my first baby, I didn’t know if I should go in or not.  I finally called the on  call doc who said to come in.  Your dad took me to the hospital in a big and burly blue Dodge Ram. The ride was anything but smooth, and each bump brought pain.

    After laboring from 11:00 PM on Monday to 8:00 AM on Tuesday, you were born.  I can remember the exact moment.  I can remember the smell of the room, the blue of the cover, the humanity in the anesthesiologist, and then the moment I saw you.  They raised you up above the cover and I stared at the most beautiful wrinkled sight of red pink skin and tears I had ever seen.  My eyes streamed with tears and so did your dads.

    Our baby had been born to us.

    I have always found it funny since that day, Tuesday, October 20th, 2009, that your birthday was your happiest day.  I mean, I hope it is, and I will do everything I can do to make sure it is.  But, your birthday, and the birthday of your brother; were two of the most happiest days of MY life.

    Today is Thursday.  I am tired.  It’s been a long week. However, every birthday since we’ve lived in this house, I have hung balloons in our hallway for you to pass through on your birthday.  I thought about not doing it, but then I thought, you and your brothers birthdays were the happiest days of MY LIFE.  Losing sleep is a small price to pay to celebrate the happiest day of one’s life.

    So I stayed up and blew up the balloons and I hung them in the hall.  I watched old videos and smiled until tears flowed from my eyes.   I can’t believe you are 8 years old.  I can’t believe just a few short years ago life was so hard that my mantra was “the days are long but the years are short.”  Here we are.  The days were long and I blinked and you are 8 and when I blink again you will be 16.

    I’m so blessed to be your mother.  I want you to know I am ALWAYS proud of you.  Your friendliness undeniable, your determination unstoppable, and your spirit, unparalleled.

    Behind your name are a countless number of diagnoses, but they do not and never have defined you.  You have learned to overcome.  You have learned to press on.  You have learned happiness is found in simplicity.  You have learned that the secret to life is gratitude, and despite all of your challenges, I couldn’t be prouder.

    Happy Birthday “bug bug.”  I love you more than words could ever, ever say; and trust me, this writer usually has a lot to say.

     

  • “She’s a puzzle” or…. she has dyspraxia

    “She’s a puzzle” or…. she has dyspraxia

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    It’s no secret apraxia, dyspraxia, and developmental coordination disorder are not well known. Ask any parent, or heck, even any professional, and you will find out pretty quick few people really know what it is.

    Hey, I was one!  I was one of those professionals before my daughter was born. Here’s the thing.  I had my bachelor degree and masters degree AND my SLP CCC certification, and yet I had very few pages detailing apraxia of speech. Dyspraxia?  Developmental Coordination Disorder?  Pretty sure I never even learned those two terms.  My masters degree program taught us to research, but should I have really had to “google” to figure out how to treat a kid with apraxia?  Shouldn’t that have been addressed in school? Shouldn’t dyspraxia and developmental coordination disorder at least been given a shoutout like all the other rare disorders I had to remember including Fragile X and Rett Syndrome?

    I digress though.  THIS is why we need dyspraxia awareness week, this year October 8th through the 14th.  Oh, I should mention awareness week was started in the UK by the dyspraxia foundation.  I hope to carry it over here to the U.S., because just because my daughter lives here it doesn’t mean it’s any less prevalent. 

    When I took my daughter in for her first Child Find Evaluation, I remember the PT(physical therapist) telling me,

    “She’s a puzzle.”

    If you are a professional reading this like I was once, you probably didn’t think much about that last statement.

    “She’s a puzzle.”

    We all have one of those kids on our caseloads that we just can’t quite put our finger on exactly what’s going on; and part of the diagnostic process is testing a kid and finding out all the pieces to the puzzle to help develop the best treatment plan for the child.  Sounds about right.

    I can tell you though, hearing your child is a puzzle is quite frankly heartbreaking as a parent.  A puzzle is something you haven’t figured out yet.  As a noun, the definition of a puzzle is, ” a game, toy, or problem designed to test ingenuity or knowledge.” As a verb, the definition of puzzle is “to feel confused because they cannot understand or make sense of something.” So, with those two things in mind, think of how you might feel when professionals who treat children who exhibit similar problems like your child tell you “She’s a puzzle.”

    I don’t want professionals to tell me she’s a puzzle.  I don’t want to know that she’s so unusual that her very being challenged your knowledge, or that you are confused by her.  I mean seriously?  As I’m further on in this journey now, and as I’ve been able to talk to numerous parents nationwide who have a child with apraxia and dyspraxia, I can tell you she’s not a puzzle at all.  Her presentation, to varying degrees, is exactly the same presentation as other children with her disability.  This includes a high likelihood of sensory processing disorder and attention problems to name a couple. Despite this, I was still told last week by someone that her attention issues are a “puzzle.”  Sigh

    This fabulous research article probably puts it best in their opening statement positing,

    Dyspraxia is an enigma to many people, both professional and lay alike

    Enigma now!  It’s ridiculous if it weren’t completely true.  Dyspraxia IS an enigma to both professional and lay people alike.  Listen, the only puzzle, or enigma that I can see after being on this journey for about 5 years now is this.  It’s puzzling THAT PROFESSIONALS IN THE FIELD don’t know about apraxia and dyspraxia.  Now THAT is the puzzle.  I’m including myself friends.  I’m not exempting myself.  How is it, that according to some data it’s prevalent in as high as 10% of the population, yet my daughter is “a puzzle.”  There’s something wrong with that.

    A simple google search of dyspraxia, apraxia, and dyslexia though will reveal a list of symptoms that are exactly what my daughter has and experiences.  She’s not a puzzle at all.  She fits in all the little boxes of these graphics completely, like the one below. I could quite literally check every…single….box. I guess all the separate boxes resemble a puzzle, but if you put them together they all fit perfectly to complete that big box in the middle: dyspraxia.

    Ultimately though, this article is more than a rant.  This is a dyspraxia awareness post and this is what I want to see.  I want to see these disorders as understood and as well known as other relatively rare global developmental delays like Down Syndrome.  When a professional hears the word “Down Syndrome,” I can guarantee a list of characteristics common to those with DS will pop into their head.  There are always varying severities of course; but a professional is going to know what to expect and be better equipped to help them.

    I hope there is a day no other person with dyspraxia is told they are a puzzle or an engima and instead is greeted with, “Oh dyspraxia?  Okay.  We know exactly how to help you.”