SLP Mommy of Apraxia

Category: Sensory Processing Disorder

  • Apraxia as a symptom to a bigger picture

    Apraxia as a symptom to a bigger picture

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

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

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

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

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

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

    In the post on ADHD I wrote:

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

    In the post on Dyslexia I wrote:

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

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

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

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

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

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

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

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

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

     

    Resources:

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

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

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

     

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

  • Report cards are bittersweet with special needs

    Report cards are bittersweet with special needs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    Not yet.

    I will.

    I promise I will.

    I just can’t face it yet today.

  • Diagnosis, Disability, and Finding your Tribe

    Diagnosis, Disability, and Finding your Tribe

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

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

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

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

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

  • Whatever it takes: A day on the brink

    Whatever it takes: A day on the brink

    Ashlynn had oral surgery today to fix a ridiculously thick upper labial frenulum that was impacting her front teeth.  I have anxiety.  That’s no secret.  I was pretty nervous.  I had like every prayer warrior I could think of praying for her.

    It’s not that serious of a surgery in the grand scheme of things; but she was going to have to take a valium the night before, and then one and hour before and one right before surgery.

    I gave her the valium pill  (meaning I watched wringing my hands while my husband gave her the pill) and waited.  The surgeon said the pharmacist may fuss at the prescription, especially since she is tiny, but not to worry.  Um……telling a worrier not to worry is like telling the sun not to come up.  Actually it might be worse.  It made me freak out more than had he said nothing and just prescribed the pill.

    I immediately decided she would sleep with me, because if I woke up I needed to hear her breathing. That was basically a joke because the valium made her hyper and crazy emotional.  She would laugh hysterically and then just start balling uncontrollably.  Every emotion was magnified and out of her control.  She talked incessantly and didn’t get to bed until 10!!  Despite this, I kept her home from school because I figured she would feel pretty tired.

    Wrong

    She woke up on the right side of the bed happy and ready.  In hindsight, I should have just sent her to school and then taken her out when it was time for the procedure.  She was also (and she told me multiple times) very MAD I was not letting her go to school. It’s amazing right?  She has no close friends, struggles in every subject, and was just bullied recently…..but she’s mad I didn’t send her.  Her internal resolve and determination is incredible.

    Anyway, I digress.  I let her graze on food all day since she would only be able to eat soft foods after the surgery.  I gave her the second valium an hour before and it made her hyper again.  She was talking incessantly, and at the doctor’s office she was literally jumping and running in the lobby.  If you know my child, she is pretty much the opposite of a sensory seeker, so seeing her do this on a drug that’s supposed to make you sleepy was crazy town.

    The doctor made the decision in light of her behavior not to give her the third valium. The procedure went amazing.  The surgeon and his team were amazing and awesome with kids.  Ashlynn though was awesome too.  High tolerance for pain means she didn’t even flinch when the needle went in for the anesthetic.  He asked her to close her eyes, but I explained she wasn’t going to be able to do that on demand because of her motor planning issues, but seeing a needle wasn’t going to freak her out.  She gave blood for her genetic testing last summer staring at the needle and joking with the flabotomist that she was “taking a lot of blood wasn’t she?”  The flabotomist remarked in her whole career Ashlynn was the only person who smiled giving blood. LOL

    So that’s the good part.  Everything else was pretty much a shit show.  I’m sorry to cuss, but sometimes it’s the only words that cut it. The doctor’s orders were clear.  Relax, take it easy, eat soft foods, do medicated mouthwash rinses (which turned into salt water rinses since Ashlynn can’t spit), alternate ibuprofen and tylenol, and keep lips closed and ice the outside. Sounds basic.  I got in my car and turned on Imagine Dragons “Whatever it Takes.”  I told Ashlynn it was our song.  We do whatever it takes to help her.  We never give up. We do what it takes.  I was feeling pretty good.

    However, Ashlynn apparently thought it was opposite day.  She immediately and incessantly kept talking.  I kept telling her to keep her lips closed and then she would burst into tears that I was being mean to her and not letting her talk.  I calmed her down with the promise of a present.  That was short lived because she kept biting the ice pack (hello SPD).  If I corrected her to not bite it, she became hysterical.  Hysterical = bad because she could rip out the sutures.

    “Fine just give me the ice pack and talk.  Throwing a tantrum will rip out the sutures.”

    We picked up her brother, and he was trying to be helpful and told her (nicely) to stop talking so she doesn’t bleed.  That was code for “Let’s go to War” in Ashlynn’s world and they started fighting on the way home.  My stress was at a 10.

    Once home, she decides she’s famished.  Not hungry…FAMISHED.  She can only eat soft foods.  I feed her two bowls of noodles, 5 yes FIVE pieces of bread, countless squares of cheese, a banana, and then an ensure calorie drink I had my husband pick up on the way home.  After dishes I go downstairs and find her eating gummies she got out of the storage room!!

    “What the hell are you doing??”  You can’t eat gummies!!!”

    Not my finest moment I know.  She burst into tears I was yelling at her.  Told me again how mean I was being.  Again, she is supposed to be resting.  Most kids who took valium would be asleep.  Nope.  Not my kid.  I go downstairs again to find her bouncing on our big yoga ball.

    “Ashlynn….you’re supposed to be taking it EASY!!  Get up upstairs and watch a movie!!”

    Ashlynn hates movies.  She is 8 years old and due to a visual processing motor problem and language processing issues, she cannot follow the story line of an entire movie and therefore has never watched one completely through.  She bursts into tears again, throws a tantrum and guess what?  Her suture finally decided it had enough stress and started bleeding.

    I got a washrag and applied pressure just like the doctor said to do.  She seemed to realize it was somewhat serious now.  My son was majorly freaking out trying to help me out.  Ashlynn was still mad I had been mean to her.

    Bedtime came and I had to try and do a salt water rinse.  She still can’t spit.  She has one motor plan.  Swallow.  She can’t chew gum either for this reason.  First sip.  She swallows.  Second sip.  She swallows.  Third sip, she somewhat spits all over my mirror but I praise her.  Fourth sip, she swallows.  Fifth sip, spits all over my mirrors.  I have NO idea if any reached her suture, but we tried.

    She’s finally in bed. I have the song “Whatever it takes” on again.  Tomorrow is a new day.  Dang parenting his hard, but I can’t give up.

    Whatever it takes.

    Playing on snapchat trying to get her to be quiet and keep her lips closed!

  • Happy 8th Birthday Bug Bug.

    Happy 8th Birthday Bug Bug.

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

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

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

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

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

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

    Our baby had been born to us.

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

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

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

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

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

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

     

  • You know you need awareness when you know more than the “experts.”

    You know you need awareness when you know more than the “experts.”

    About a year ago I switched insurance from my husband’s to mine, in order to leave no stone left unturned.  I know that kids with apraxia can have some sort of positive indicator on a brain MRI, or genetic marker.  I had yet to do any of that testing, and so I decided this was the year to do it.

    My husband questioned why.  Is there a reason to know? Will it change anything?  Well, in some very small cases, people have discovered things that have been helped, but most likely the results would not yield anything.  My husband again questioned why.  Would it change the treatment plan?  Therapy plan?  Long term prognosis?

    “Probably not,” was my reply, but honestly, I just had to make sure.  I have to look in her eyes every morning and every night as she struggles through every daily living task and educational task. I have to pray most days to check my patience because many things she does is not her fault.  So yeah, I also have to be able to look at myself  reflected in her adult eyes someday and tell her with complete honesty,

    “Ashlynn, I did everything I knew in my power to do, to help you.”

    I have to be able to say that.  Yes it cost thousands of dollars and I’m on a payment plan for those medical bills now, but it’s worth it.  Everything came back negative and it’s STILL worth it.

    I’m not here to cry and moan though.  If you have a child with apraxia you are just as much in the hole as me.  No martyrdom here.  What I DO want to talk about though, is neurology.

    I went to the Children’s Hospital of Denver.  Well respected, popular hospital.  I took her to neurology and the first appointment went exactly as expected.  Exam and then orders for an MRI and genetic testing.  Pretty standard with Ashlynn’s presentation.  We only found out our neurologist was a resident when the supervising doc came in for a review.  Nice.  I guess it’s no big deal, but it would have been nice to know our appointment was with a resident. Maybe that’s not common, I don’t know.

    The second visit was a follow up visit.  I already knew the MRI and genetic testing didn’t yield anything remarkable.  I was there to see what their dx would be.  Our resident neurologist did her exam and then a different supervisor came in. She did a few things with Ashlynn, and then, as though I wasn’t even in the room she proceeded to tell the resident that “she doesn’t have apraxia” among other things.

    I think I sat in my chair in the twilight zone for a minute.  My head shifted back and forth between the two as I struggled to process what had actually been said.  Did that woman just say Ashlynn doesn’t have APRAXIA???

    “Um…wait.  Yeah, I’m sorry.  Did you just say she doesn’t have apraxia or oral apraxia?  Ask her to close her eyes on command.  She can’t.  Ask her to spit out some water…she can’t. Ask her to smile on demand, she can’t.  Oh, and if you don’t hear her speech apraxia, I am more than able to take you through a motor speech exam quickly.”

    The supervisor did many of the non-speech things I recommended.  She saw, as I said, Ashlynn couldn’t do them.  She then looked at her resident, again as though I wasn’t in the room and commented, “Oh, is this the SLP?”

    “Yes, I’m an SLP that specializes in her disorder,” I responded for the resident.  “Would you like me to take you through a motor speech exam?” I reiterated.

    She told me that wasn’t necessary and changed the subject to the next course of action.

    People.  WTF?

    You ALL know just as well as I know that if I WASN’T an SLP, that neurologist would have told the parent ASHLYNN doesn’t have apraxia.

    Ashlynn has been in therapy since before 3 and has a mom as an SLP!  She is now almost 8!  My God, I would HOPE she has improved.  WTH is wrong with people??  This is a DOCTOR for CHILDREN’S HOSPITAL NEUROLOGY.

    Sigh

    This is why I say and will ALWAYS say, you the parent are the expert on your child.  It sucks right now because parents seem to know more about apraxia and dyspraxia than experts.

    I have a client who has a son with apraxia and dyspraxia.  Apraxia was officially dx by me, so she asked where she should got to get the dyspraxia dx.  I recommended a neurologist.  She found herself at Children’s Hospital too.  Different neurologist.  She point blank asked if her son had dyspraxia and his answer was,

    Do I look like a therapist?

    My dear readers, therapists don’t diagnose dyspraxia or developmental coordination disorder!!!  It’s a DOCTOR who does this.

    I absolutely hate that we as parents know more than the professionals, but you guys, we do.  I say that AS a professional too. That is why awareness is so important to me, but right now we have to be the experts on our children!

    Don’t stop.  Don’t accept any “expert” opinion just because they are an “expert.”   Don’t be afraid to ask questions.  Dig for answers.  Listen to your gut, because you DO know your child better than anyone.

    Advocate.

    Don’t blindly accept “expert” opinion.  Value your own.  You are a parent and that makes your an expert on your child.

    Remember that.