Category: language disorder

  • 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.

  • 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.

  • Good SLP’s for apraxia are addressing the head in the hands

    Good SLP’s for apraxia are addressing the head in the hands

     

    Therapy for apraxia is direct and intense.  Any task that involves motor planning is this way.  Motor planning any skill, whether it be learning to shoot hoops, hit a tennis ball, or learning to speak when your etiology is motor planning (apraxia), instruction needs to be intense and involve a lot of repetitive practice.

    I remember when I attended an intensive 4 day training, Dr. Ruth Stoeckel from Mayo clinic was asked how many repetitions SLP’s should be looking to get in therapy.  She hesitated and expressed concern about giving a number.  I didn’t understand her hesitation at the time.  It was a simple question, how many repetitions should we be trying to get in therapy?  We were all professionals.  We all understood that this number would be in the ideal circumstance, and that many factors would decrease the number.  Still, she was hesitant to give a number.  She did finally say in the ideal circumstance, we are looking to get around 200 reps per session.

    I now realize why Dr. Stoeckel was hesitant to throw out that number.  It’s not only because it can only happen in the most ideal circumstances and we might frequently fall short.   The main concern is that a number doesn’t take into account a child’s emotional health.

    Let me say it again.  Yes our goal is to get a lot of reps, but it doesn’t take into account a child’s emotional health!

    I was talking to a student who is Ashlynn’s para right now and he is looking to earn his special education degree.  He expressed concern that others seemed so much smarter than him and he was worried he wouldn’t be as good a teacher.  He was the only person in Ashlynn’s life thus far who recognized her anxiety and nail picking and fixed it by buying her a rubber band ball.  His professor actually admonished him for it.  It just went to show his professor sitting at the university was completely out of touch with what was going on the field, and that was my point to this young man.

    I have met brilliant SLP’s.  Seriously brilliant.  “C’s get degrees” does not apply in my field.  I’m not trying to boast either, it just doesn’t happen.  Graduate school for speech/language pathology is extremely competitive, and average GPA’s, AVERAGE, were 3.88 to 3.97 at the time I was trying to get into graduate school.  That means a fair amount of current SLP’s held college level GPA’s that were 4.0.

    It’s important to have the best of the best teaching our children to talk; however, a GPA can never account for what I would consider to be one of the most important qualities in an SLP.  It’s a quality I can’t even succinctly put into one word, but it is by and far the most important.  It is a therapist’s ability to read and then respond to the emotional health of their student or client.  If we, in our quest to get 200 reps completely disregard any signs of emotional anxiety, distress, or defeat in the child; we have lost everything we had hoped to gain.

    Let me say that again.  If we sacrifice a child’s emotional health for the sake of getting in so many reps, we have lost EVERYTHING.

    Speech therapy is predominately speech and language therapy, but the counseling aspect I believe is significantly underscored. My graduate program did include a class on counseling in speech therapy, but it was geared primarily to the adult population or for those who stutter.  Our pediatric field recognizes now the importance of counseling in stuttering therapy, but there is very little information out there on counseling and our kids with not just apraxia, but also a phonological disorder, articulation disorder, or a language impairment.

    What Dr. Stoeckel was trying to tell us in her hesitation of throwing out a number of reps we should be targeting, is that if we sacrifice their emotional health and our trust relationship with them for the sake of getting in a certain amount of reps, we have sacrificed everything.

    I get sent videos from time to time asking for advice, and usually what I find striking is NOT the speech therapy that is being done, but the absolute blind eye turned to a child’s nonverbal signs of emotional distress.  I remember watching one video and the child was enrolled in PROMPT therapy.  The SLP was kind, competent, and skilled at what she was doing.  What she never even once acknowledged though was that the child would constantly put his head in his hands when she asked him to repeat anything.  Nothing was said.  Nothing at all!  Not, “It’s okay, I know this is hard, but you got this!” or “I know it’s so hard and I can see you are frustrated so let’s take a break.”

    Nothing. Just, “Say it again, try again.”

    It was all about reps and speech and reps and speech and reps and speech and reps and speech.

    I’m here to tell you, if we aren’t addressing the head in the hands, the best and the smartest SLP in the world isn’t going to make progress.  I told this student, if we aren’t addressing the nail picking that causes bleeding, the best and smartest SPED teacher in the world isn’t going to make progress.

    Let’s go back to motor planning though, since the research is telling us that is the most effective form of treatment for apraxia.  If we liken it to another motor skill like basketball, is the job of a coach JUST to teach the kid the right technique and the right form to shoot a basket?  Or, is the job a coach to also encourage, foster, and nourish their confidence as well?  In that analogy, it seems obvious; yet with speech therapy we still don’t seem to be there yet.

    A final example comes from a newer client of mine.  Completely nonverbal at the age of 7, her school SLP, who is amazing, risked her job to recommend private therapy.  After three months, she was making progress, but much, much slower then I wanted.  She had major avoidance behaviors and if she were asked to repeat anything again she would point to something else, pretend her finger hurt, or try to get off topic.  The avoidance behaviors decreased the more she developed trust and had success, but I still felt like I was missing something.

    Since Valentine’s day was coming up, I decided we would take a break from speech and do something fun.  Make Valentine’s.  I still embedded a few target words in the activity, but for the most part, the focus was on the Valentine.  She made one and I made one.  When I showed her mine, I read all the things I wrote about to her.  I stressed that she was brave and could do hard things.  Her brown eyes searched my face, wanting to believe me.  When I read she was creative, she proudly pointed to the Valentine she had made, and I nodded in affirmation.  After the session, I had her mom come in and read it.  She beamed as her mom read the words on the page.  Before she left I looked her in the eye again and told her she was brave and could do hard things.  This time, though her eyes still searched my face, she nodded her head.

    The next day her school SLP sent me a video.  She had a breakthrough and said two new words and her confidence was through the roof.  We both decided taking time to address her emotional health was going to be just as critical to her speech progress as were the principles of motor learning.

     

    My message today is this.  You can have the smartest, most competent, adept and amazing SLP in the world;  but if they aren’t addressing the head in the hands, the avoidance behaviors, or a child’s emotional heath; they are sacrificing EVERYTHING. In our quest to provide good therapy for apraxia, we keep in mind the principles of motor learning, but ALSO what it means to be a child’s coach and champion.  That might mean some sessions we elicit 0 reps, but what we gain in trust is immeasurable.

    Be the therapist who is looking to give good therapy, but who first and foremost is always looking for and then addresses the head in the hands.  Your kids will thank you.

     

  • I Know an Old Lady Who Swallowed a Clover: Speech/Language Book Companion and Activity Pack

    I Know an Old Lady Who Swallowed a Clover: Speech/Language Book Companion and Activity Pack

    Back again for St. Patrick’s day, my popular “There Was an Old Lady” book companion template to work on a variety of skills!

    • the repetitive vocabulary pictures from the book and sequencing grid to aid in story retell

    • Two different following directions activities: one following simple one step directions, and the other following directions using positional/spatial concepts
    • a four page mini book to practice the carrier phrases: she has, she saw, she wants, & she ate + book vocabulary pictures

     

     

     

    • an enlarged picture of the old lady to glue on a manila envelope or cereal box and “feed her” the vocabulary pictures.

    To get this book companion, visit my TpT store

  • 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.”

    Sign up for my newsletter to get all the info related to apraxia, dyspraxia, and dylexia for 2018.

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  • Apraxia? Phonological Disorder?  Language Disorder?  What’s the difference?

    Apraxia? Phonological Disorder? Language Disorder? What’s the difference?

    So many times I see parents post a video of their child speaking, or attempting to speak, and they ask, “Is this apraxia?”

    The follow up question is usually something like, “If it’s not apraxia, then what ELSE could it be?

    The answer is that childhood speech and language delays can be caused by a variety of factors.  It’s important to keep in mind too, the difference between “speech” and “language” disorders when we are discussing speech and language delays.

    On the surface, speech and language seem like different sides of the same coin.  This is particularly true when people or even professionals may seem to use the terms interchangeably.  If a child isn’t speaking, they must have a “speech” problem right?

    Not necessarily.

    A child with a “speech disorder” has a problem in the way or how they say sounds. Most of you who read this blog know my daughter has apraxia, and apraxia, in its truest sense, is a “speech” disorder.  It’s not a language disorder (although my dear daughter and many other kids have both).  Other common factors that can cause speech disorders, or the way kids say their sounds are:

    1.) A hearing loss, or even a history of chronic ear infections – If a child has a hearing loss, or is suffering from a hearing loss due to chronic ear infections; their typical speech development *may* be negatively impacted. Without going into a technical explanation, it makes sense that a child with ear infections who is hearing like they’re “under water” during the time they are supposed to be learning how to talk, may have speech and/or language development that is delayed.

    2.) Stuttering – a disruption to the flow of speech, is also considered a “speech” disorder because it is characterized by disruptions in the production of “speech sounds.”

    3.) Phonological Disorder – Phonological disorder is one of the most common speech disorders that SLP’s treat, so I was shocked to go to the ASHA website and find this definition:

    Speech sound disorders that impact the way speech sounds (phonemes) function within a language are traditionally referred to as phonological disorders; they result from impairments in the phonological representation of speech sounds and speech segments—the system that generates and uses phonemes and phoneme rules and patterns within the context of spoken language.

    It is NOT that complicated.  To put it simply, phonological disorder is a speech sound disorder in which the child typically makes consistent patterns of errors.  For example, one common phonological process is called fronting.  In this process, the child will consistently produce the /k/ sound as a /t/ sound, and the /g/ sound as a /d/ sound.  It is a predictable, patterned error.  This child, regardless of the word will usually always make these substitutions.  However, a child with a phonological disorder can have several phonological processes they are employing and be quite severe and have significantly reduced intelligibility.  A child with phonological disorder may have numerous substitutions, omissions, or distortions.

    4.) A motor speech disorder such as apraxia or dysathria –  Apraxia of speech refers to a child’s difficulty with the planning and programming of speech production that results in inconsistent errors, deficits with prosody, and significantly reduced intelligibility.  Unlike kids with phonological disorder, children with apraxia do not always have predictable and consistent error patterns.  This could be on repeated productions of the same word, or the ability to produce one sound in different words.

    For example, a child with apraxia may be able to say an /m/ in the word “momma,” but be unable to say or inconsistently say an /m/ in the word “more.”  Another child with apraxia may say “baby” for baby once, but when asked to say it multiple times may produce it different ways such as saying: baby, bay-ee, daby, or day-ee.  A child with apraxia may have numerous substitutions, omissions, or distortions.

    In addition, children with apraxia have some sort of prosodic disturbance to their speech.  This can manifest in ways such as: stressing each syllable in a word resulting in more “staccato” sounding speech, or errors with pitch, intonation, rate or volume.

    Graphic depicting the differences and overlap between phonological disorder and apraxia.

    Language delays do not involve the actual production of speech sounds (although the two can overlap). Language delays can be caused by many factors as well, and include:

    1.) A late talker – A late talker is just a typical child who talks late and has no additional speech or language issues from it.  The ASHA website offers this explanation “At onset, it is difficult to distinguish late talkers from late bloomers, as this distinction can be made only after the fact,” which as a parent and professional of children with apraxia, this is a pretty DANGEROUS and potentially hazardous distinction if you are just waiting around to see if it’s late blooming or something else.

    2.) A language impairment – There are many components of language. Language is comprised of five major components including: phonology, morphology, semantics, syntax, and pragmatics.  In addition, children can have difficulties expressively or receptively with these components.  Some children can have both, getting a diagnosis of MERLD or mixed expressive/receptive language disorder.

    3.) A hearing loss –  This is repeated on this list, because a hearing loss can also cause delays in language development as well. ASHA describes its effects in the following:

    There are four major ways in which hearing loss affects children:

    1. It causes delay in the development of receptive and expressive communication skills (speech and language).
    2. The language deficit causes learning problems that result in reduced academic achievement.
    3. Communication difficulties often lead to social isolation and poor self-concept.
    4. It may have an impact on vocational choices.

     

    3.) A medical or genetic condition – Other causes of language delay or impairment could be but aren’t limited to:

    Autism
    Fragile X
    Down Syndrome
    Cerebral Palsy
    Cleft lip/palate

    To complicate things even more, a child with a medical disorder could also have a co-morbid speech or language impairment as well!  It’s important to always know the etiology because an accurate diagnosis ensures and informs therapy.

    What I hoped to clarify in this post is that the question “Does this look like apraxia?” is just a little (okay a lot) more complicated than it seems.  Obviously the best place to start is to get a comprehensive evaluation!  If apraxia is suspected, it is best to get a differential diagnosis from an SLP who has received additional training past their post graduate degree in apraxia of speech.

    To find an apraxia expert near you, or to get listed as an apraxia expert,  go to apraxia-kids.org and click “find a speech therapist” at the top.