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  • The biggest apraxia challenge: Graduation 2032

    The biggest apraxia challenge: Graduation 2032

    Day 21 of Apraxia Awareness Month is to discuss your biggest challenge.

    I read the various posts and related to all of them.  ALL of them.  Unfortunately when your daughter has a laundry list of disabilities with apraxia being just one of them, yes,  I could relate to everything.

    My son struggles with word finding.” Check

    “My son struggles with anxiety.” Check

    “My daughter struggles with attention.” Check

    “My child has difficulty navigating social situations.” Check

    “My child struggles with handwriting.” Check

    “My child struggles in school.” Check

    Literally the list goes on and I could check off almost everything else.  I’m farther in this journey now though and though we continue to have new challenges, I had an epiphany about them.

    The biggest challenge was realizing the very definition of challenge does not mean struggle.

    No.  The very definition means a contest, competition, or objection.  And guess what?  One can argue and overcome ALL of those things.  If you follow my social media pages, then you know Ashlynn is having a stellar last couple of months.  The girl with dyslexia who was more than two years behind in reading is testing on grade level.  She just graduated occupational therapy after being in private OT for SIX years. At field day, the girl with dyspraxia and cerebral palsy wowed her classmates by killing it on the hippity hop ball station, and the girl with a language processing disorder and apraxia is just “one of the gang” according to her general education classroom teacher.

    The biggest challenge was not just hoping, but holding firm my belief that Ashlynn could overcome them all.

    Ashlynn just ended her third grade year and she is 9 1/2 years old. I have been through AT LEAST 8 IEP meetings.  I have been brought to the edge of despair.  I have watched my husband shed tears in front of strangers.  I have looked around a room of literally EVERY discipline (speech, OT, PT, Special Education, general education, psychology, social work) and listen as they ALL described deficits in my daughter.  I have sat, stone faced and quiet for fear that talking would reveal my anguish and diminish me to a weeping pile of sadness on the floor.  I refused to be that person. I was probably rude at times, but I promise it was for self-preservation and to ensure my daughter never ONCE thought I didn’t believe in her.

    As one who has been on this journey with Ashlynn, my biggest obstacle was in discovering no obstacle was ever too big.

    Armed with this knowledge now (at least in this current space of happy that I’m in), I truly look at current and future obstacles and say, “Bring it.  You have never met an opponent like us.  You can try to break us, but you won’t.  You can knock us down, but we’ll get up stronger.”

    An SLP Mommy friend I know posted a video and said “Apraxia created one gritty little girl” referring to her resilient daughter. I couldn’t agree more.  Apraxia was never our greatest obstacle.  Believing we could overcome anything was, and we did it.  I know there are more struggles, more obstacles, bigger mountains to climb but they don’t intimidate me anymore.  Ashlynn has proven time, and time, and time again that no matter what life throws at her, if you have a positive attitude, perseverance, and HEART…no one and nothing can beat you.

    Starting with one of my most popular posts “Lessons of a Tricycle” to “Lessons from a Bicycle” years later, success has always been waiting for us as along as we just keep pedaling.  Just kept trying and never, ever, EVER give up.

    This past weekend my niece graduated from college and Ashlynn wanted to try on her cap.  We snapped a picture and all commented, “how cute!” But inside, I was silently smiling and thinking, “Another challenge?  BRING IT 2032!”

    Love,
    Laura and Ashlynn

     

  • Who diagnoses Childhood Apraxia of Speech?

    Who diagnoses Childhood Apraxia of Speech?

    Many parents often wonder who diagnoses Childhood Apraxia of Speech? They wonder where to seek help when questioning if their child has Childhood Apraxia of Speech (CAS).

    Many professionals claim to be able to diagnose, and in fact parents report getting their child a diagnosis from professionals such as neurologists, developmental pediatricians, and psychologists to name a few.  This is concerning because CAS is a speech disorder, and only speech/language pathologists are qualified to diagnose.  In addition, not just any speech/language pathologist (SLP) is qualified to diagnose either.  SLP’s need to have advanced knowledge and expertise in motor speech disorders and motor learning principles.

    The American Speech/Language Hearing Association has a position statement on the matter.

    You can read it here.  https://www.asha.org/policy/PS2007-00277/  
    It’s important to look to credible resources such as these because even this position statement states it must not only be any SLP, but also and SLP who specializes in motor learning theory with skills in differential diagnosis.

    In it, it says:

    “It is the policy of ASHA that the diagnosis and treatment of CAS are the proper purview of certified speech-language pathologists with specialized knowledge in motor learning theory, skills in differential diagnosis of childhood motor speech disorders, and experience with a variety of intervention techniques that may include augmentative and alternative communication and assistive technology. It is the certified speech-language pathologist who is responsible for making the primary diagnosis of CAS, for designing and implementing the individualized and intensive speech-language treatment programs needed to make optimum improvement, and for closely monitoring progress.”

    There is sometimes confusion that CAS is a medical diagnosis. It is a label for a speech diagnosis. There may be co-occurring medical issues, but the speech problem does not require diagnosis by a medical SLP or doctor. School SLPs may be discouraged from making a diagnosis of CAS because they are expected to use the federal impairment categories, which include speech-language impairment, but not specifically apraxia.

    Other professionals  who do not have the skills and training of a speech/language pathologist may contribute to overdiagnosis.

    Getting a diagnosis of apraxia, a serious neurological speech disorder is a potentially emotionally traumatizing event to a family.  Professionals have an ethical responsibility to adhere to guidelines given from reputable sources such as the American Speech/Language Hearing Association.  However, if CAS is suspected, it would be appropriate for another professional to refer the child to a speech/language pathologist with advanced knowledge in motor speech disorders to provide a differential diagnosis.  In addition, the speech/language pathologist will be able to make recommendations for the treatment plan, recommended frequency of therapy visits, and personalized goals that other professionals cannot do.

     

    Laura Smith is a mother to two beautiful children, one of which was diagnosed with apraxia and dyspraxia. She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech. To learn more visit SLPMommyofApraxia.com

  • Growing up with Apaxia: A hidden card up his sleeve

    Growing up with Apaxia: A hidden card up his sleeve

    Hi Mark!  I’m so excited to have you as part of my Growing up CAS series! You recently just completed your first year of college correct?

    No it was my first semester of college.

    Congratulations!  I hope you know by you sharing your story and experience you give other parents out there so much hope!  You are an inspiration and someone for our kids to look up to! 

    Can we start with you telling us a little bit about yourself?  

    I’m Mark Lippert and I’m 19 years old. I live in Saint Paul Minnesota with my Mom, Dad and my sister. When I was diagnosed with apraxia I was 2 ½ years old.

    What are your childhood memories of having apraxia and going to therapy?

    My early memory of being in speech therapy is that I needed my mom and sister to be in the speech therapy room with me or I would not work.  As a reward for me after speech therapy my mom would take me and my sister out for ice cream by my speech therapy center.  It was 40 minutes away from my house and my sister had to sit with me in many speech therapy sessions, so that is why she got ice cream too!  At the end of each summer speech therapy, my mom would take me and my sister to “Chuck e Cheese” which had 2 floors.  

    Did you have any additional academic struggles or co-morbidities?

    Yes i had a lot of struggles with school over the years. I had a IEP since I started school K-12. I got diagnosed with a learning disability when I was in 2nd grade.

    How has apraxia affected your life, or has it?  Do you have any residual issues?

    Apraxia has affected me and my whole life in good and bad ways.  My speech can be an issue but I  do not let it define my life.  For example, I might not be understood the first time when I’m talking to someone. But I do not let it interfere in the conversation with someone.  Apraxia has shaped me into who I have become and if I did not have Apraxia my whole world would change. I bet I would not have the same work ethic and motivation that I have. I have gotten so many compliments by teachers on work ethic and motivation that I show in my life.

    Work ethic is a huge key to success!  Speaking of school, what was your school experience like?

    My school experience has been mostly good where teachers would support me and what I had on my IEP where I might not have been as good as other students but they would always understand. For all of my school career I have been that type of student in the Special education program were the student would be flip flopped being in a regular classroom and being in every kind of special education classroom. My case managers over the years have been ok at best.  In high school I was  put in special education classrooms where it did not fit my educational needs in that it was really too easy for me. In total over having case managers excusing elementary school, I have had four with the the most being in high school. Overall my school experience has been good when my supports fall into place.

    What do you want people to know about you and others living with CAS?

    Trust your child’s class performance over IEP Re-evaluation testing.

                                IN SOME CASES     

    That apraxia kids can understand everything that you say. I think that apraxia kids’ brains can process at the same or a little faster as anyone can.

    What advice do you have for those growing up and/or living with CAS?

    Just keep fighting! I know that you might not want to go to speech therapy because you know that you can’t say the  word you have been trying to say as clearly as possible.  You might not say it that time but you are going to say it in the long run. When i was younger I hated when people said that I was going to speech therapy. I would tell them to just call it “Speech.”

    Most parents are so worried about the future when their child gets an apraxia diagnosis.  What would you tell them?

    Like my mom says “ there is always a light at the end of the tunnel.”

    Do not set any expectations for their education career and their life.  They might surpass them all like I did! My parents did not think I could ever be in college. They thought at the best I would go to a Trade school. Do not ever let the internet shape a picture of your child’s life going forward, because your child might have a card up their sleeve that they might not show you at their start of life, but at the end they are going to show you everyday!

    That gave me chills Mark!  You are helping to change the stigma around apraxia and special education!  I can’t wait to see what you do moving forward!  You definitely had a few cards up your sleeve and I’m sure your parents couldn’t be prouder!

    Growing up with apraixa is part of an ongoing series that aims to celebrate neurodiversity and highlight those who have grown up with Childhood Apraxia of Speech and related struggles.  If you are interested in being featured, send an email to lauraslpmommy@gmail.com

  • 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

  • Thank you for choosing me to be your mom

    Thank you for choosing me to be your mom

    It’s Halloween, 2018.  You are a freshly turned nine-year old.  You are 9 years old. My mind immediately repeats a phrase from my dad,

    “Mr. Baskall, here’s your little baby girl.”

    I remember I would roll my eyes and scoff at him.

    “Ugh dad!” I would lament as he looked at me with eyes brimming with pride.

    I don’t have any words to describe or memorialize your entrance into this world, but I have your pictures.

    Halloween, 2009 was the most magical holiday that I have ever experienced.  It was the first holiday I ever experienced as a mom.  I was a mom.

    I was a mom!!

    On Halloween’s prior, the entire holiday was full of self-entitlement, but the Halloween of 2009 was full of something completely different.  I had given life to the most beautiful angel.

    My normally highlighted hair was brown, which is actually my natural color.  I had diligently not dyed my hair while pregnant with Ashlynn to ensure no harmful chemicals crossed my scalp, into my bloodstream, crossing the placenta and then hurting my baby.  I remember taking every precaution to ensure I had the healthiest baby my body could possibly produce.  An avid craft beer drinker from Colorado, I would refuse to even take a sip while pregnant.  I ate my lunch meat warm to avoid lysteria and eliminated all caffeine so my developing fetus was never exposed to any stimulant in utero.  I wore an industrial style mask when I painted her baby room to ensure she was exposed to no harmful fumes.

    So confident was I in ensuring I had followed every caution and recommendation, the thought never even once crossed my mind I would have a child with any sort of developmental delay.

    Life sure answered back with a big middle finger and boisterous laugh at that one.

    Every Halloween though, I become nostalgic.  I remember that new mom holding that tiny baby in her cute onesie with the pumpkin bum and beaming with pride.  I remember my husband dutifully reporting to work each day, but taking time to hold, hug, kiss and fawn over the tiny human we had somehow created together.

    I remember my heart being so full I thought it could actually burst from the amount of love that it was trying to contain inside.  Every Halloween, ironically, reminds me just what a GIFT life actually is. Yes, this day of the dead reminds me of how lucky any of us are to actually live.  Halloween always reminds me of how blessed I was to have a baby.

    I had no idea then, all the challenges life had in store for Ashlynn.  When I look at that picture, I see the instant connection a mother has to her child.  Our eyes are fixated on each other, and I know she trusted me to be the person to never give up on her.  I remember what an honor it is that Ashlynn chose me to be her mom, and I renew my commitment to never, ever, EVER, give up on her.

    I love you Ashlynn Kay.  Thank you for choosing me to be your mom.  I hope I never let you down.