SLP Mommy of Apraxia

Tag: Childhood Apraxia of Speech

  • Hammering out apraxia with David Hammer

    Hammering out apraxia with David Hammer

    Hi Dave!  Thank you so much for coming on to guest blog!  You know you are famous in the world of apraxia, so I am honored you are willing to guest blog!  Your contributions to the field of Speech/Language Pathology and more specifically apraxia are inspiring.  It’s an absolute honor to know you and I can’t thank you enough, speaking as a mother of a child with apraxia, for all you have done to advance the field.  Recently, you just announced your retirement set for the end of this year.  Though I am sad, I am so grateful for your enormous contribution to the field and am so happy you joined me today to share your knowledge!  I normally pick a specific topic, but for you, my readers wanted to ask questions related to apraxia and see what you had to say!

    I feel humbled by your kind words, Laura, and also feel blessed to have been in this great field for 40 years.  I will return the thanks for all that you have done in the Apraxia community as you wear the hats of an SLP and a mother of a child with apraxia. I often talk in my presentations about how SLPs have to wear so many hats – their SLP hat, their parent counselor hat, their psychologist hat, their OT/PT hat, etc. given that we are dealing with the “whole” child and not just the “hole” where speech emerges!  I applaud anyone in this profession that looks at children this way. I am fine with answering a wide range of questions so I will proceed…

    Can you start though by introducing yourself first including how and why you became interested in apraxia?  Also, what is your involvement with Apraxia Kids?

    I started out working for Children’s Hospital of Pittsburgh, PA after graduating from the University of Pittsburgh.  Through my first office window I look directly at the building that housed the speech clinic where I was trained! I began to specialize in stuttering but then Luke Lasky, Sharon Gretz’s son, came into my life through a referral from my esteemed boss, Dr Tom Campbell.  It wasn’t long before I became fascinated by this challenging motor speech disorder and from that point, my career passion changed. Having been a part of the beginning stages of what is now known as Apraxia Kids has been quite rewarding. To see this organization grow from 2 parents observing their 2 boys with CAS through my two-way mirror in dyad treatment to what it is today is remarkable.  I left Children’s Hospital after 35 years as a practicing therapist and administrator and joined the Apraxia Kids staff (then CASANA) where I have been the last 5 years. I recently announced my retirement plans for the end of 2019. It has been quite a journey!

    Is it necessary and beneficial to get an MRI or do specific genetic testing or any type of medical testing for that matter.  If so, why?

    This is always a challenging question and one that I answer for parents often.  Let’s start with discussing a neurology appointment. I do not feel that all children with CAS need to see a neurologist, unless they demonstrate what we call “soft signs” such as clumsiness, inability to cross midline, hand tremors, imbalance, staring spells, etc.  In those cases you would want to rule out other potential medical diagnoses. But to ask a neurologist who likely had very minimal training on CAS to evaluate whether or not a child (who is usually very reluctant in a physician’s office) shows features of CAS is unfair and could potentially lead to misdiagnosis. Also, CAS is not a medical diagnosis.  Studies have concluded that a high percentage of children with CAS show normal MRIs.  There is no conclusive brain imaging or genetic tests to diagnose CAS. It is a clinical diagnosis to make and should be done by a speech-language pathologist.  The child’s SLP may suggest genetic testing or neurological testing if they see indicators of other concerns but to routinely have all children get an MRI, have genetic testing done, or a neurological examination is not what I recommend.  Unfortunately, some of our SLPs in Canada in certain provinces are required to send all children to a physician to get a CAS diagnosis which can certainly slow the process of getting children the therapy help they so desperately need. Some parents just want to make sure every rock has been overturned and will seek out genetic testing and/or neurological testing.  I would never stop them from doing that but will discuss the pros and cons.

    What are other conditions that are common with Childhood Apraxia of Speech?  

    I would say fine motor planning struggles, sensory issues and anxiety are 3 that come to mind first.  I added anxiety to that list just recently as I talk to more and more parents and SLPs about how children who struggle to communicate seem to have more anxiety than is typically seen. It makes sense when you think about it as communication is such a vital part of what makes us human and social beings.

    For the child with profound apraxia, where do you even start?

    First of all, you must make sure that the child has the foundational skills for communication such as joint attention, ability and willingness to imitate (any motor movements), and a certain level of cognitive ability.  Some of the children can’t make use of motor speech therapy until those foundational skills are in place and a lot of time is wasted just trying to get speech first. If those foundational skills are intact or to a point where the child can benefit from therapy, then the starting point would be for me building on whatever the child has in their vocal/verbal repertoire.  We can use expressions, animal noises, vehicle sounds to build speech from creatively. The foundational element is the syllable for motor speech work so we would not work much in isolation but would constantly be looking at sequencing sounds to build motor plans. I would work on a very few words in the initial stages when a child has profound CAS to build these motor plans in hopefully functional ways.  The targets for this early practice are critical and should allow for the child to feel early success or they will lose their motivation for trying quickly. Speaking for them is very challenging, and it is not much fun to have to repeat syllables and words over and over, so to get them to take vocal/verbal risks is the challenge for the SLP and parent/caregiver alike.

    Is it possible for a child to have apraxia, sensory issues, and other language disorders such as Mixed Expressive/Receptive Language Disorder and it not automatically be autism?

    For sure.  I have seen a number of children for evaluations who come in with a diagnosis of autism spectrum disorder who really reflect severe CAS with mild-moderate sensory issues.  I also see it the other way around where parents are holding on to a CAS diagnosis when it is apparent that the child is also showing features of autism. For some parents, they think that when the speech symptoms “go away” their child will just be like all other children, but this is not always the case when there are complicating dual diagnoses. I can certainly understand why parents would hold on to something that appears more “fixable” despite the challenges that CAS brings.

    Is there any research on regression in speech motor planning when a child has a growth spurt?

    I know of no evidence of this, but my psychology and child development training throughout the years coupled with my experience show me that there is always a chance of regression and or behavioral change when there is a growth spurt that sets the “system” in a whirlwind until it can again settle down. It’s an interesting question and one that would be fascinating to study.  Overall, however, we do not see significant regression in speech for children with CAS. We are likely to see what I call the “plateau effect” where there are periods of leveling off of progress while a child is apparently consolidating his/her gains. I stress to parents that they should think of these as “input phases” where their verbal input, practice, etc should still continue and even heightened despite the output not changing much.  Then you tend to see this followed by a spurt of progres but it often cycles back. The journey of CAS is not a straight line of progress.

    You’ve presented before on best practices for apraxia with a co-morbidity of autism.  Are there any resources available for this?

    There are not many resources currently.  Key points to be made here have to do with differential features, for example children with CAS ofen averting eye gaze due to lack of communication success and children on the spectrum often avoiding eye contact due to perceived aversiveness to looking an another’s face.  Both groups may demonstrate sensory issues which is why misdiagnosis is so easily done. One article from the April 2011 Journal of Autism and Developmental Disorders comes from Larry Shriberg and his group called “The Hypothesis of Apraxia of Speech in Children with Autism”.  

    Is there a connection between apraxia and reading struggles?

    A very high percentage of our children with CAS struggle with reading and show evidence of struggles in the preschool ages with foundational phonological awareness skills.  It is critical that SLPs and parents make sure there are foundational elements of literacy incorporated into therapy sessions and home practice/stimulation. There is nothing better for parents to do then read to their children daily.  I usually suggest at least one book for pleasure and one that incorporates some degree of speech practice time. I think this is one of the biggest frustrations I hear from parents – just when they think the child is overcoming the motor speech challenges, along comes major literacy struggles which then pervade learning in school.  It is this constant “getting over the next hurdle” that requires a lot of perseverance for parents.

    Do difficulties eating or picking eating often accompany apraxia?

    As I mentioned before, with seeing so many children with CAS having sensory issues of one degree or another, it would make sense that picky eating may be a component of these sensory deficits.  It is difficult to sort out whether there is oral planning challenges contributing to eating difficulties and the possibility that it may be more of a weakness issue (e.g. a child with dysarthria or combined CAS/dysarthria) needs to be investigated.

    Let’s end it with something fun.  Do you prefer plain socks or fun socks?  

    On me or on others? – haha!  I would say I tend to wear plain socks most of the time, but when I was a practicing therapist, I had a LOT of fun kid-themed ties that I think helped children feel even more comfortable when they came to see me.  Oh, I do have a pair of dinosaur socks that were gifted to me by a child’s parent when her child ended therapy, knowing that a major theme in our therapy had been dinosaurs! Ironic that I just bumped into that parent and her now older child when I went to see Hamilton the other night!  Both experiences were amazing as I marveled at what Lin-Manuel Miranda and this parent/child duo had accomplished!

    Thank you so much Dave!  It’s been an honor to have you, to know you, and to consider you a mentor and friend!  Your contribution to the field cannot be measured. As a mother to a child with apraxia, I’m so grateful to you. 

    …and I am so grateful for you, all the parents/caregivers out there on this journey, the children who truly are superheroes, and the SLPs who passionately want to help, ALL of whom have inspired me in this field!

     

  • Top Ten SLP Mommy of Apraxia Posts for 2018

    Top Ten SLP Mommy of Apraxia Posts for 2018

    Hi readers!  I haven’t been as active on the blog as usual because my goal for 2018 was to write a book and I’m happy to say I completed that goal!  My goal of 2019 is for it to be published, so we will see!  In the meantime, I did manage to get some blogging done and here are my top 10 posts for 2018!  Thank you so much for your support and your love throughout the years.  It truly means so much.

    1. The Problem With School SLP’s

    A

    2. Interview with Mikey: The Wish That Turned Into a Passion

    3. Apraxia as a Symptom to a Bigger Picture

    4. Strategies to Promote Speech and Language in the Pre-Verbal or Minimally Verbal Child with Apraxia

    5. This School Year, Teach your Children to be Kind

    6. Finding our Umbrella

    7. Good SLP’s are Addressing the Head in the Hands

    8. The 6th Apraxia Awareness Day Brought Smiles, Tears, and a Jaw Dropping Moment

    9. Report Cards are Bitter Sweet in Special Needs Parenting

    10. Old Faces, New Faces, and the Passing of the Torch

    Cheers to an eventful 2018.  It was a year full of pain and happiness, love and sorrow, and hope and despair.  May we all remember that life can be intensely beautiful and irreparably sad all at once, because that my friends, is the definition of living.

    This 2019, I wish you all the gift of perspective in life.  We all have bad things happen.  We all have stress and we all have pain.  We also all have a choice, and that choice is to wake up each morning with a grateful heart and to focus on our happy and joyful moments rather than be sucked into the pain of despair and heartache.  There was a time Ashlynn’s dx seemed like the darkest event in my life, but I realized it was the beginning of my testimony to some of the most beautiful characteristics this human life affords us.  May God bless us all this year and always.
    Love and Peace,

    Laura

  • Favorite Winter Children’s books for Speech Therapy

    Favorite Winter Children’s books for Speech Therapy

    Favorite Winter Children’s books for Speech Therapy

    1. The Jacket I Wear in the Snow by Shirley Neitzel
      A great repetitive, rebus style book!  So many target words in this book include: cap, scarf, mittens, sweater etc.  Good for winter clothing vocabulary and sequencing too!

       2. There was a Cold Lady Who Swallowed Some Snow by Lucille Colandro
           Lucille Colandro always makes my list for favorite books because her Old Lady series contains all the elements I work on with apraxia therapy including repetition, prosody, and sequencing!

    Activity: Find my book companion in my TpT store here: Cold Lady Book Companion

    3. Froggy Gets Dressed by Jonathan London
    Another great winter clothing repetitive book that the kids LOVE.  I work on target words “out” and “in” a lot in this book since Froggy is always going outside and inside; however, I can also hit “put on” when he’s putting on his clothes or work on prosody when Froggy and his mom are yelling back and forth to each other.

    4. Polar Bear, Polar Bear by Eric Carle
    It’s a classic for a reason!  Repetitive and engaging, kids love to participate in the book read.

    5. Bear Snores On by Karma Wilson
    Love the Bear book series!  Bear is hibernating and sleeps through a winter party while his friends all gather in his lair to escape the cold. Target words for this book include: “on” in the early stages or “snores on” when working on /s/ blends.

    Activity: Free character cutouts from Making Lemonade in Second Grade available on TpT here:

    6. Bear Feels Sick by Karma Wilson
    I was going to stick to a top five list, but I couldn’t resist adding another Bear book.  Kids relate to poor bear feeling sick and the familiar and lovable characters are always heartwarming!  Target word in this book is “sick” so you have to make sure you have a kiddo who can produce both /s/ and /k/; but if they can, this is a great target word.

    Below you will find a free graphic I have on my TpT store explaining how to use repetitive books with your child to promote language and practice speech. My targets and books are always strategically selected based on the child’s sound repertoire. Click the picture to get the free download.

  • The 6th apraxia awareness day brought smiles, tears, and a jaw dropping moment

    Can it be that this is officially the SIXTH Apraxia Awareness Day?  The first one was way back in 2013 and was fresh off the heels of Ashlynn’s diagnosis.  At that time I was in such a sad place and having an awareness day was uplifting, empowering, inspiring, and amazing.

    Not much has changed, but for different reasons.  This was the first year I decided to go into Ashlynn’s classroom and officially “teach” about apraxia to her classmates.  I hadn’t done it before because apraxia didn’t seem to be keeping her from living her life and making friends, but this year had been different.  Though Ashlynn’s apraxic component is considered mostly resolved, her co-morbidities of dysarthria and language disorder impact her word finding, ability to get her words out, and make her talk slower and sound a little slushier and not as crisp as other students.

    I had a 5th grade student I have seen since second grade come and give the presentation with me.  Interestingly enough, I met and started treating him in second grade, when he was in the very same classroom that Ashlynn was currently in.  As we sat in front of 86 second graders, I saw his confidence grow throughout the presentation.

    I sat behind him ready to clarify anything that didn’t need clarifying.  Like a pro, he listed the three main causes:
    1.) Genetic
    2.) Brain injury
    3.) No known cause and just present at birth

    He was adamant to me beforehand that the kids know you “can’t catch it.”  I thought it was odd and told him I thought most kids wouldn’t think that, but if he wanted to say that it was a valid point.  I was shocked, I mean stunned, when I tell you what happened when he asked those 86 second graders if they thought they could catch it like a cold.

    THEY ALL RAISED THEIR HANDS.

    I was shocked, but my 5th grade student wasn’t. He knew.  I know a lot about apraxia, but this was new.  I had no idea kids thought they could catch it just by hanging out with her.  Oh my gosh!!  Had I known this I would have been teaching about apraxia to her class EVERY awareness day since she was in preschool.    Like a professional, and with his apraxia on display, my 5th grade student explained apraxia was nothing like a cold and you couldn’t catch it.  He reiterated the three main causes and moved on.  I had to have been beaming with pride from behind him.

    Next up was our demonstrations on what it feels like to have apraxia. My student gave the example of having the kids imagine they wanted to say “dog” and they knew the word “dog” but when they opened their mouth they said something completely different like “bwog,” and no matter how much you know how to say it and what you want to say, your mouth won’t say it correctly.  The second graders eyes were big and curious.

    Since Ashlynn also has extreme word finding issues compounded by anxiety, I had prepared an activity in which we called up two students.  I had a sentence written on a piece of paper that student 1 would have to act out for student 2 to guess without saying words.

    My student called on a boy and a girl each time for the first three examples.  For the fourth, just like a true teacher, he asked Ashlynn to call on two students.  She was excited to have control.

    After this activity it was time for questions.

    “How many kids have it?” asked one student.  About to jump in this 5th grader said,
    “1 in every two schools.”  What a great way to say 1 in every 1000 students!

    “What does it feel like?  Does it hurt?” asked one child.  The 5th grader answered that it doesn’t hurt physically but it hurts emotionally.  Actually he had an apraxic moment and said the opposite, but I was there to make the minor clarification and he went on to explain that it hurts emotionally.  “It hurts when you want to get something out and you can’t and it makes you sad.”  I seriously think I had tears in my eyes.  He was getting through to these kids.

    The day was so full circle.  When I met this 5th grader, I had just completed my Apraxia-Kids bootcamp training and was ready to help and empower children with apraxia.  Here I sat three years later from bootcamp and six years later from Ashlynn’s diagnosis beaming with pride.  What I learned today was our kids with apraxia are going to be okay.  Empowering them with knowledge and giving them a platform to educate and be their true authentic selves is going to be the winning formula.  Beyond resolving or not resolving, having residual effects or not, empowering our kids with knowledge and then giving them the opportunity to educate is going to change the world.  It really is, and I know our kids may struggle in school, but they are going to win in LIFE.

    We sent the kids away with treat bags and an informational tag on apraxia.  I had planned on reading the book in the picture but decided against it because the demonstration was so much more powerful and interactive.

    At the end, my 5th grade student passed out treat bags with Ashlynn.  Where Ashlynn was shy and reserved, he encouraged her to stand with him and help him pass them out.  She beamed and felt special.  I looked at them and saw the passing of the torch.  I had empowered him, and here he was empowering and encouraging my daughter.  I just sat back and watched with tears of gratitude in my eyes.  I have told him multiple times, begged him actually to come back and find me somehow when he is older.  I know he is destined for so many greater things than just his apraxia.  In fact, apraxia has prepared him to be the incredible person I know he’s going to be.

  • A fish in a tree and the teacher who helped her swim

    A fish in a tree and the teacher who helped her swim

    Ashlynn is in 2nd grade and is in Girl Scouts.  She has been in Girls Scouts since Kindergarten.  She loves it; but honestly, Ashlynn loves most activities and new adventures.  Yes she has apraxia, dyspraxia, SPD, ADHD, learning disabilities and a language processing disorder; but despite all of those disabilities she is a true extrovert that one.

    Ashlynn’s Girl Scout troop leader is seriously amazing.  If there were an award, I would nominate her to be the best girl scout troop leader in the state, because she is.    A girl scout troop leader is a volunteer who donates their time.  This woman though I think must be a real life saint who deserves a salary.  When Ashlynn first started Girl Scouts I wrote a post about how she became misty eyed and told me that she knew what Ashlynn was going through.

    When I first met her, I noticed something a little off with her speech.  Later I found out she has a hearing disability, and has had one since birth.  From the beginning she was very concerned about Ashlynn’s needs.  I was also surprised to learn that she had never had anyone with a disability before.  She told me she just wanted to make sure this experience was the best possible experience for her, and that she was willing to make accommodations or help her however she could.  We ended up having to make a few accommodations, especially with requirements. For example, in Kindergarten the girls needed to have memorized their name AND address to earn a special pin.  It took everything we could do for Ashlynn to learn the address, but we could just not get the phone number at that time.  Ms. E made an accommodation like a trained special education teacher would; and said as long as she can memorize one of the two, she would earn her pin.

    The other night the girls had homework.  It was a picture where you had to find items hidden in the picture.  She sent home the actual picture; and then she found, on her own, a simpler picture and told me that Ashlynn just had to finish one.  In special education we call this modifying the curriculum.  This woman has never read Ashlynn’s IEP.  She does not in fact know her modifications or accommodations.  She intuitively does them.  I can’t help but think it’s because she understands.  She has walked Ashlynn’s shoes.  She totally, totally gets it.

    This past weekend there was an event at the Denver Zoo called “Bunk with the Beasts.”  The girls would get to spend a night away from home and “camp” at the zoo.  Right after I received the group email about the event, her troop leader followed up with a personal email requesting that she know of any special accommodations or help that Ashlynn would need so she could do them.  She didn’t want Ashlynn to miss out.  I sent back a big list.  Ashlynn has dyspraxia.  Activities of daily living, like all the steps to get ready for bed are NOT easy. Her troop leader wrote back it wouldn’t be a problem.  A few days later a chaperone pulled out so I was asked to come.  I was thrilled!  I said yes immediately.  This way her troop leader could focus on the other 18 girls, and I could be there and help Ashlynn.

    When we arrived, there were 4 adults to 19 girls.  Her troop leader split them into groups of two.  She told me that usually a chaperone or leader is not placed with their girl, but in this case she made an exception.  So her and I were in charge of one group of girls in which Ashlynn was a part of, and the other two co scout leaders were in charge of the other group of girls for the zoo tour and excursions.  Some would find this preferential treatment; but it is in fact, an accommodation. I found a renewed sense of awe in this woman.  She went onto explain that many of the girls have developed “best friends” and she purposefully separated them for this event because a troop cannot be a troop unless they all learn how to work together.  I shrugged it off.  She looked at me more earnestly and said, “No, when I mean best friends I mean like this,” and she proceeded to hug my arm and not let go.  I still shrugged it off not realizing yet her point.

    As she gathered the girls and called out what group they were in, one of the girls was visibly shaken.  Her mom is a girl scout troop co-leader and I was standing next to her at the time.  She told me that this was a big reason her daughter wants to quit Girl Scouts next year, because Ms. E insists that the girls be separated from their best friends.  As she talked I looked on.  Most girls had a best friend in which they were sitting next too.  If not, they were still obviously part of the group.  Two girls sat in the back of the group slightly removed, but Ashlynn was basically completely removed in the back by herself.  Don’t get me wrong, she wasn’t acting upset or lonely.  Ashlynn loves girl scouts.  It just struck me in that moment that most girls had an “arm clinging” best friend, and my daughter had no one.  This mother I was standing next to felt so bad her daughter would feel alone and away from her best friend for a couple of excursions, and my daughter felt that way basically all the time.  I don’t fault this mom.  Maybe if I didn’t have a kid with a disability, I would feel the same way too.  Maybe I wouldn’t understand or even notice that another child in the group, the child with disabilities never had any of those best friend moments.  Maybe I would be sad that my child would be sad for a couple hours and never realize this girl in the same troop sitting in the back by herself doesn’t EVER have an “arm hugging” best friend. Maybe…..

    Ms. E did though.  Ms. E noticed.  That’s why she split them up.  Society needs to stop casting those who are different to the outside, but including them and accepting them too!  We are all better when we work together.  Ashlynn and I had the best time.  Ms. E paired each child with a “buddy” and Ashlynn was thrilled to have a peer’s hand to hold as she walked around the zoo.  Ashlynn’s joy is so contagious and she is an adult magnet.  I could see though in this setting, just how unlike her peers she looks.  She’s not shy.  She doesn’t get embarrassed or worried about making mistakes.  She bonks into stuff and people and laughs at herself.  She loses attention easily and starts to wander which would annoy her buddy.  She would randomly start talking or singing when you weren’t supposed to and her buddy would have to shush her. It didn’t matter though.  It made Ashlynn’s entire night to be part of her peer group.

    I came home and cried to my husband I get why girls think she’s different.  She’s not stuck up.  She’s not concerned about what other people think.  It’s amazing how society gets it’s grasp into children as young as second grade.  I noticed so many girls tugging at their shirts, checking their appearance, and censoring what they say because they want to fit in.  I couldn’t help but look at Ashlynn and think of the Dr. Seuss quote, “Why fit in when you were born to stand out?”

    What’s ironic is these kids who “stand out” end up changing the world.  I am almost obsessed with successful people.  Notice I didn’t say “famous” people, though many might be famous.  No SUCCESSFUL people.  People actually changing the world and making it a better place.  The innovators and visionaries.  Most of them were kids who were a little different.  Some may have had a “disability” like ADHD, dyslexia, or whatever.  Bill Gates said once, “Be nice to the nerds.  You might end up working for them.”

    Last month in the news the boy scouts were under fire for revoking the eagle scout badge for a teen with Down Syndrome.  The parents filed a lawsuit claiming that their son was being discriminated against because without accommodations, there would be no way he could earn the necessary requirements to get the Eagle Scout Award.    

    The argument against him earning the award was that though he tried his hardest, he did not meet the requirements set forth.  If you don’t have a person with a disability in your family, I could see how this could make sense to you.  There are requirements that have been established, and if a person can’t meet them for whatever reason, they don’t.  There are able bodied children who don’t meet the requirements either and that’s just the way it is, right?

    Let me point out this graphic.

    This graphic compares teaching to going to a doctor.  Kids go to the doctor for different symptoms, and the doctor treats the symptoms.  It would be ridiculous though if you went in with a broken arm and the doctor prescribed antibiotics.  Under our current educational model that is not inherently inclusive; this is exactly what is happening.  The current educational model is based on a child without any learning, attention, or behavioral disabilities.  The lessons are made and the classrooms are set up for kids who can sit in a chair, listen and interpret information, and then attend to their work.  It is not equipped for  the child who needs sensory breaks, or the child who needs to use asisstive technology to help them write because they can’t, or the child who needs assistive technology to have something read to them because they can’t read.  It is not set up for the child who cannot learn through the auditory channel but learns best through visual and tactile channels.  Here is the most important piece though about all of this.  Children who are not “typical” CAN show their learning and skills in other ways if they are just given accommodations!!

    That’s not fair, you might say.  I would counter that it’s not fair we have a bunch of children with broken arms (learning disabilities) being forced to take antibiotics (traditional education), and then are penalized for failing. They are SET UP to fail.  A system that mandates all children must learn the same and prove they have learned the same is a broken, discriminatory system.  As Albert Einstein once said, “If you judge a fish by it’s ability to climb a tree, it will spend it’s whole life thinking it is stupid.”

    Ms. E understands this and I am so, so thankful to her.  The challenge today for apraxia awareness month was to recognize a teacher making a difference.  There are so many amazing people I could choose, but today I Thank you Ms. E, for recognizing my daughter is a fish and deserves a chance to swim.

  • It’s rare, so no one cares? Prevalence of CAS

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

    What’s that?

    If you have a child with CAS (Childhood Apraxia of Speech), you have heard this question once, twice, many, numerous, too many times to count in the course of their life.  We all have developed our standard answer since we are prepared for the fact that no one knows what apraxia is.  This sadly does not just include the general public.  We run into this with doctors, teachers, professionals, and yes, some parents have even reported getting this question from Speech/Language Pathologists!

    I am a self-declared Apraxia Advocate and the reason I’m so passionate about awareness is because with awareness comes proper diagnosis, and only after a proper diagnosis can the child get proper treatment.  Only with proper diagnosis will we understand additional learning difficulties that may arise from this disorder; which means we will be better equipped to understand how they learn differently and tailor their educational programming better to fit their needs.

    We say that CAS is a rare and severe speech disorder.  We convince ourselves people don’t know about apraxia because it’s so rare, and sometimes, I think we all start to accept nothing will change.  Afterall, it only affects 1-2 children in every 1000.

    I certainly have my down moments where I have thought this, but it actually has never deterred me or stopped me from my efforts.  I’m preparing for a presentation in July for the CASANA conference, and something made me look up prevalence rates of other disorders.

    Have you ever heard of Down Syndrome?  Are you reading this thinking what a silly question? I’m willing to bet 99% of you have heard of it.  It’s covered well in graduate school for speech, and usually every school setting has at least one child with DS in the building.  At the very least, most teachers, educators, professionals, and most of all therapists have heard of Down Syndrome.

    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.

    I actually started to get worked up.  Wait a minute.  What is wrong with this picture?  That can’t actually be right can it?  I thought to my own personal experiences.  At one school building I have two kids with DS and in a second, I have one.  At one school building I have two kids with apraxia, and at another I have two as well.

    Wait, so how is it EVERYONE it seems has heard of Down Syndrome, but no one ever seems to know what apraxia is?  Oh friends, this bit of data has now only strengthened my resolve.  At one point, somewhere, I’m sure Down Syndrome was a rare disorder too that no one had heard of.  Oh friends, we need to step up our game.  We need to stop accepting that no one will ever know or care about apraxia (oh fess up!  I know we’ve all been there at some point). The it’s rare so no one cares attitude is not acceptable anymore.

    We have to continue on!  I saw this the other day and absolutely loved it.  I can tell you I know many apraxia walk coordinators nationwide now and we all have this in common.  Every person counts.  Even one more person who knows what apraxia is, is a victory.

    Let’s stop thinking rare=unknown, because it’s not true.  We only need to look at the Down Syndrome Community to prove that point.

    It’s time to make our collective voices louder.  Join your local walk, educate the community around your child; remember, every person counts.  CAS was only accepted as a real and distinct disorder in 2007, which really wasn’t that long ago….but the point to remember is that it IS a real and distinct disorder and our children DESERVE to have professionals in their life who are as familiar with apraxia as they are with Down Syndrome, don’t you think?