SLP Mommy of Apraxia

Category: neurodiversity

  • Shaming parents about home carryover

    Shaming parents about home carryover

    I’ve been on this special needs journey with Ashlynn for a long time now.

    I have grieved, recovered, grieved, and recovered again. I have developed thick skin.  I have felt guilt, then peace, more guilt, and then peace.

    I thought I was past all the BS.  I have accepted Ashlynn has severe needs.  I have accepted my journey with Ashlynn is going to be MUCH longer than I ever anticipated and I have embraced it.  This girl goes to school from 8 to 2:45, and almost every day after school she has some sort of therapy or tutoring strategically scheduled to help her overcome all of her learning disabilities.

    I’ve been done making excuses for not doing homework.

    I finally just started being honest and saying “We will see. She is a very busy and overscheduled little girl,” when therapists would ask about homework .  Ashlynn goes to school and then has therapies after school, and then we hope to get home to eat and then finally do her SCHOOL homework.

    That doesn’t mean there isn’t any other homework.  Oh no.  For all the therapies she receives after school there is also homework.  Always homework.  So not only does the average kid NOT go to therapy or tutoring everyday after school, they also then don’t have the homework assignments from said appointments after school.

    My daughter has it all.

    Go to school and get homework, and then attend therapy and tutoring that takes away from homework time after school and receive MORE homework on top of school homework for the extra after school services.  Oh, and my daughter has global motor planning issues, so any homework assigned is usually homework that needs to be done everyday.

    Everyday my daughter is expected to do regular school homework and then follow through homework for OT, PT, Speech and tutoring as well.

    If for some reason said homework isn’t done or done to the fidelity of a therapist’s expectations, I get to see the raised eyebrows and judgemental eyes.  I know what they are thinking even if they don’t say it.  “You couldn’t carve out 5 minutes for some simple yoga poses?  Speech word practice? Sight word drills?”

    Again, I thought I was past this.  I was done feeling guilt.  My whole life is running around trying to get my daughter the help she needs and then coming home and trying to be a mom and get dinner and then at least getting through her school homework. I have been done for a LONG time apologizing for not getting the therapy homework done.

    That was until today

    Two weeks ago I put Ashlynn into a therapy called oral facial myology to help with her mouth breathing, tongue thrust and immature swallow.  I knew going into this the homework component was going to be big.  I knew this! We received a sticker chart to keep us honest.  Ideally she would do the exercises 2x – 3x  a day and we would reconvene in 10 days.

    Today was our second follow-up appointment. I was so proud of Ashlynn!  We had done the exercises every single day!  A handful of days we managed 3x, most days we did 2x a day, and on three days including one where she spent the night at her grandma’s we did 1x a day.

    I was proud of us.  That was no easy feat. Sometimes it cut into bedtime but I knew this was important and I was willing to go the extra mile.

    My sails were immediately shredded within 5 minutes of our second visit.

    The swallowing therapist was warm and inviting as usual.  We were seven minutes late because we were driving from PT and I had forgotten to ask the physical therapist to end 5 minutes before and instead she ended 5 minutes late.  We still made it though! School ended at 2:45, we were at PT at 3:30 and then we were at swallowing therapy at 4:25. I was proud of myself for getting her to all these places.

    “How did the homework go?  Did you complete it?” the therapist asked Ashlynn.  Ashlynn enthusiastically nodded yes as I took out the sticker chart and the therapist looked on disapprovingly.  So there are three days here you could only do one practice session?  For this program to be successful, she needs to be doing the exercises at least 2x a day.

    “There are a couple days we did three!  Does that cancel out the three days we could only fit in one?” I laughed nervously.

    I looked up to a face of disapproval.

    “For this program to work, you really need to be more consistent,” she lectured.

    I swallowed a big swallow and collected our things. I think I literally gulped back tears.  I was paying a lot of money for this therapy.  Of course I wanted to see it be successful.  Of course I wanted to practice with Ashlynn as much as I could.  Guess what though?  I also needed to make sure we completed her homework and read at least 10 minutes per night.  Then and only then did I need to make sure she was doing her homework for reading tutoring, OT, PT, and speech as well.  Oh and she also needed to eat at some point and take a shower.  Being a kid?  Nope.  That’s not in the cards apparently.

    The guilt and responsibility is overwhelming

    I cried as I left the swallowing woman’s office.  I was trying!  I thought Ashlynn and I had done amazing!  We practiced what seemed like every spare minute we had together, which actually is very little spare time together!  I was proud of our dedication, but this woman had only criticism.  She told me if the program was to work, I really needed to get more serious about practice.

    I went home that night in a state of anger.

    I was yelling at my kids, my husband, the computer..really anyone who would listen.  I was devastated at having a therapist, a well respected therapist basically tell me if I didn’t take the homework seriously and with the fidelity it needed to be, my child wouldn’t improve.

    I railed against everyone and then I messaged an ally.

    The ally I messaged is an SLP who specializes in apraxia and oral facial myology.  I was so lucky to meet her at L.A.’s Walk to Talk for Apraxia when I took Ashlynn at 8 years old.  Her name is Lisa Klein and she has a reputation for not only being an amazing therapist, but being an incredible friend, mentor, and encourager. I barely know her yet knew I needed to talk to her.   Fortunately for me, she told me I could call her on my way home and like a crazy mom who is desperate I did.  I talked in a long winded series of run on sentences and questions and when I stopped she said the most impactful thing to me that brought me to tears.

    Laura, first of all, you are a great mom and that girl has come so far because of you.

    I started balling.  Not like crying either or tearing up.  No. Chest heaving ugly cry balling.  I just needed that validation.  She went onto say things that our myofunctional therapist suggested too like going every other week.  She brainstormed how to get in practice or what exercises we absolutely couldn’t miss. She said all of this though with compassion and free from judgement, and that is exactly the type of therapist I aim to be too.  We need to meet parents where they are at and we need to know parents are under an insane amount of pressure and are doing the best they can with the tools that they have.  I need a therapist to understand that.  I’m constantly shocked by the number of therapists who have so most judgement. I say this all the time but I say it again.  Please, if you are a therapist reading this please have compassion and understanding for the parents.  We are fighting daily battles and crying tears no one ever sees.  Please be kind.  Please.

  • Did I cause her apraxia?

    Did I cause her apraxia?

     

    When Ashlynn was first diagnosed with Childhood Apraxia of Speech, I think most parents will relate when I say I spent (pointless) hours wondering what had caused it.

    Back in 2012 when Ashlynn was diagnosed, the most current information we had at the time was that it could have three main causes:

    1. Brain Trauma such as a stroke in utero
    2. Genetic causes
    3. Idiopathic – meaning of no known cause

    Though I knew this, I couldn’t help but cycle back to questions.  Questions that kept me up at night.  Any parent of a child with special needs has probably done this endlessly.  It is probably one of the main causes of sleep deprivation in special needs parents right behind “am I doing enough? and goes something like this.

    Was it that time when I was 6 months pregnant and I had the stomach flu?  Did I wear the painting mask long enough when I painted her baby room?  Was it because I had to have a C-Section?  What about the vaccines, giving her Tylenol, or that time she bumped her head?  Maybe it was……..

    And before I know it, I’m deep into the weeds unable to find my way out.

    It doesn’t help I had been privy to professional “inside” comments with colleagues who blamed parents for lack of reading, lack of talking, lack of stimulation etc.  You can read about my snub to those “opinions” in my article where I snub the 30 million word gap theory.

    It also didn’t help I would hear stories from other apraxia mamas who would share their personal experiences of being blamed and shamed.  

    So, I sought answers. It was a revolving door of specialists, waiting lists, and additional diagnoses, but still no answers as to the cause.  I would cycle through periods of acceptance and guilt, such as in this post I wrote when she was a little over 4 about a year after her CAS dx.

    Earlier this year, I thought we had found our answers when we went to rehabilitation specialist at Children’s Hospital who diagnosed her with dystonic cerebral palsy. Though I had more answers to her disability profile, I still didn’t have any answers as to what caused all the issues.

    No answers that is, until we found ourselves in the office of a genetic doctor and genetic counselor.  This is not to be confused with general genetic testing that a pediatrician can order either.  It was there that we would learn the cause of everything.  It was there, I would finally know why Ashlynn had apraxia, dyspraxia, hyptonia, ADHD, dysarthria, SPD, CP, and learning disabilities.  The answer was housed in a small set of letter and number combinations called:

    BCL11A

    A quick pub med article revealed that of the few case studies we have, children shared commonalities with:

    1. Non-verbal or low verbal status
    2. Abnormal muscle tone
    3. Gross motor delays
    4. Childhood Apraxia of Speech
    5. Dysarthria
    6. Hypotonia
    7. Dyslexia susceptibility

    The doctor explained the genetic mutation was “de novo” meaning it was not inherited and happened at conception.  It was a complete fluke when the sperm and egg came together that this mutation happened on the 2nd chromosome.

    Is it possible to be completely stunned and then not surprised at all at the same time?  Is there a word for that?  If there is, that is how I felt.  I knew as a professional researching this endlessly it wasn’t my fault.  Mom guilt though.  Mom guilt is a real thing.  It is strong, irrational, and overwhelming. So, in that sense, I wasn’t surprised.

    Knowing though that a genetic mutation was the single cause for all of her disabilities was shocking, but then quickly reaffirming. So many things went through my mind with the biggest one being,

    “This really wasn’t my fault, and furthermore, there is nothing more I could have done to change this.”

    The genetic landscape regarding apraxia is a new and quickly changing field.  We are going to see more research and information coming out now recommending that genetic testing be pursued.  Look for a follow up post with me talking about this new and changing frontier.

    For now though, I need time to process and learn.  A mother does better research than the FBI after all, when searching for answers about their child.

     

    Laura is a speech/language pathologist specializing in Childhood Apraxia of Speech and mom to two amazing children, one neurotypical and one neurodiverse. Laura is a speaker, writer, Denver Walk Coordinator for Apraxia, and is the voice behind the website SLPMommyofApraxia where she is passionate about Apraxia Awareness. 

     

     

  • When inclusion works: my hope for the rest of 3rd grade

    When inclusion works: my hope for the rest of 3rd grade

    This past break, I went over my posts from 2018, and read the article I wrote at the beginning of the year.  In it, I begged parents to teach their children to be kind as I wrote about the importance of inclusion.

    You can read about here.

    I was filled with worry and trepidation as Ashlynn started third grade.

    Last year in second had been one of her worst years with peers and friendships.  She frequently came home with bloodied shirts from her picking her fingernails.  Many times, the nurse had to change her shirt it was so bad.  She always reported that she hadn’t played with anyone at recess and my heart broke for her nearly everyday.  In second grade, she was also bullied in the bathroom but thankfully some other students heard and told the teacher.  Fresh off the heels of a great summer, I worried to see her go back to school again.

    This year though in third grade, has been one of her best years for growth not only academically, but also with friends and feeling like she was part of the class.

    The teacher told me at parent/teacher conference in November that she had told her class if they see Ashlynn sitting alone to go grab her and include her because many times it’s not that she doesn’t want to play; but rather that she has a hard time jumping into a situation.  The teacher went on to explain the kids initially did it because they were instructed to, but as they got to know her they now do it because they wanted to.

    Every year before winter break, 3rd grade throws a Luau party to add some fun and a twist to a normal Winter celebration.  I volunteered to run a craft with the class. I couldn’t believe what I saw when I got there.  Ashlynn was completely assimilated into the classroom as one of the kids, and not the “special ed kid” or the “ILC kid.”

    As she talked to her friends I thought of her speech therapy.   As she navigated the limbo stick like any of the other classmates I thought of her work in occupational and physical therapy. Her special education teacher wrapped up her current progress monitoring showing how she had rocked her goals because she knew it would be the best Christmas present to see all of her success and she was right.

    As she completed some seat work independently I thought of her TA who understands the difference between enabling and helping.

    This is how inclusion is supposed to look. Every human whether they have differences or not all want the same thing. They want to feel useful, included, and loved. Her smile says it all.

    Honestly I didn’t need any Christmas presents this year.  My cup was overflowing.  I just pray as Winter Break is over and she heads back to school, that the second semester will be as amazing as the first.

    Laura Smith is a mother to two beautiful children, one of which was diagnosed with a constellation of issues including apraxia that can be traced back to a genetic mutation entitled BCL11A. She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech.
  • 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

  • Disabilities, extraordinary abilities, and lessons in neurodiversity

    Disabilities, extraordinary abilities, and lessons in neurodiversity

    Neurodiversity and learning disability were never in my vocabulary before I had my daughter.

    I had never been exposed to learning disabilities of any kind really, and I had no idea the extraordinary gifts those who are neurodiverse had to offer this world.

    No, when I was in second grade, I was in my egocentric world and our teacher had us write “a book.”  It was a short story and we were to write on the typical school paper that has a box at the top to draw an illustration and then lines at the bottom to write the story.  Writing was always my thing.  Art….was……not.  I usually skipped the picture and went straight to writing.  In my defense though, I never technically had an art teacher.  However, even if I had, I’m sure I would have still been that defiant snotty little girl who turned up her nose at art.

    During one edit, the teacher told me the book was great but I needed illustrations.  I argued with her.  Her job wasn’t to teach me how to draw, her job was to teach me how to write.  Drawing was for the kids who didn’t know how to write and I knew how, so what did it matter anymore?  Did I mention I also went to a Catholic school, so I was marked down automatically for being sassy?  I never pulled that again, but it didn’t stop me from internally rebelling against drawing.

    “When will I EVER need to know how to draw as an adult?” I indignantly exclaimed to my mom.

    My Catholic school teacher had the last laugh though when I became a speech/language pathologist and discovered I needed to know something I didn’t know how to do.  You guessed it.  Draw.

    “What is that?  Is that a dinosaur?” one kid would ask of my drawing of a horse.

    “That’s supposed to be a bird?” another asked of my drawing of an airplane.

    Yes friends.  That sassy, know it all second grade girl started wishing she had paid more attention to art.

    Fast forward 30 years and I have a little past second grade daughter myself.  She has a laundry list of learning disabilities, many stemming from an etiology in motor planning and cerebral palsy.  Everything for Ashlynn seems hard.  She has had to fight and claw her way to learn anything through hours and hours of therapy.  I’m not kidding.  In Elementary school, she started coming home with art pieces from art class that were nothing short of amazing.  They were so amazing, it was sadly hard for me to believe that she did them without help.  However, her art teacher maintained she taught all the kids in a very structured way, giving them multiple opportunities for practice (think motor planning) before completing the final piece. This was Ashlynn’s best one from last year.

    Despite this, Ashlynn had never demonstrated to me independently she could draw even remotely close to this on her own.

    That was, until tonight.

    “Mommy, do you know how to draw a fox?” Ashlynn asked me tonight at dinner.

    “Oh baby, I don’t really know how to draw much of anything,” I answered while my husband snorted his drink out his nose in laughter before adding,

    “That much is true!  Mommy is not an artist.”

    I shot him an evil glare but unfortunately there was no denying the truth.

    “Can I teach you how mommy?  I learned how to draw a fox in art?” Ashlynn offered.

    I agreed and after dinner she had gathered paper and coloring utencils and set to work.  I really wasn’t sure what to expect.

    “Put your fist in the middle of the paper like this, and now draw a line across the top,” she instructed.

    I complied.

    “Now connect this line to this line and see?  We made an upside-down pizza,” Ashlynn continued.

    I looked at the perfect triangle and my mind raced back to three days earlier at OT where the therapist told me Ashlynn’s hardest shape to draw is a triangle because of the diagnal lines. I stared incredulously again at Ashlynn’s perfect triangle.

    “Mom!  Are you paying attention?”

    She then took me in precise detail through the rest of the picture.

    I was impressed by this.

    “You are such a great teacher Ashlynn,” I said.

    “I know mommy because I want to be a teacher you know that.  A teacher and a dog walker because that’s my deal.”

    I smiled.  She just produced a compound complex sentence.  This girl with apraxia and a language disorder just said that.

    Next was the colors.

    I fought back tears.  This was incredible.  I watched her color the page with her wrist fluidly and precisely moving back and forth and my mind flashed back to when her OT told me that until she is able to isolate her wrist from her arm, she would always have trouble coloring within the lines.  I marveled at her wrist now.  Isn’t that crazy?  What mom would marvel at their child’s wrist and control unless they had witnessed how hard that skill was to master.

    Next was texturing and drawing the trees.

    She used these terms I had never heard like “we have to jump and bump.”  I followed along dutifully.  At the end of her lesson I praised her.  It was incredible.

    “But Mommy, we aren’t done!” she said as she got out two new blank pieces of paper.

    She told me we had to write about them.

    Write?  Like actually write?  This girl with motor planning, dyslexia, and dysgraphia now wanted to write about the fox?  She began writing but immediately messed up her spelling. As she peered over at my page that she had dictated, she decided to just copy my sentence. I watched her form the letters as she had been taught and practiced throughout her years of OT and copy my sentence. There was a time, she couldn’t even copy her name, I thought to myself.

    “Sorry, mommy, ” she said, “I can’t write really good yet.”

    I responded, “That’s okay, because I can’t draw very well.”

    “But I can teach you!” she said happily.

    With tears in my eyes I told her,

    “If you teach me how to draw, I’ll teach you how to write.”

    “DEAL!” was her enthusiastic response.

    So that’s the deal.

    Thirty years later my art teacher was a 9 year old girl with cerebral palsy, severe motor planning deficits and a laundry list of learning disabilities whose greatest wish in the world is to be a teacher.  Little does she know, she already is.