SLP Mommy of Apraxia

Tag: daughter with apraxia

  • Apraxia is elusive, even to professionals.

    Apraxia is elusive, even to professionals.

    Today is the second annual Apraxia Awareness Day, and in case you haven’t heard, this year it made its way into the United States Congressional Record!  That’s a big step in spreading awareness, but there is still a long way to go.

    I was able to blog about the very first apraxia awareness day here First annual apraxia awareness day and I’m so excited to be doing it again this year.

    Most people still haven’t even heard of apraxia.  Doctors, including my own pediatrician had only vaguely heard of it, and many SLP’s still don’t know how to treat it correctly.  I was one of them!  I had a 20 page small folder on Childhood Apraxia of Speech from graduate school, and that was it!  Luckily I had an amazing mentor who took me to an apraxia conference when I first started in the field, and I was able to treat the disorder successfully with the three kiddos I saw at the school-aged level.

    However, then my own daughter was born.  Her first year was stressful.  I hated the baby screeners at the doctor’s office.  She wasn’t cooing or really babbling, but she was so alert and had the best giggle!  Everyone assured me she would talk in her own time, but every screener put her further and further behind.  She crawled late, walked late, had poor balance and choked on her food and drinks, oh, and did I mention she wasn’t talking??  I attended conference after conference on early intervention for speech.  I then would work all day and then came home and used the techniques on her.  One problem, they didn’t work!!  I was stressed, worried, and constantly thinking about her development.  Even though I was treating it in the elementary school, it didn’t occur to me that this disorder was also behind her development delays.

    When I took her to Child Find I remember the evaluation like it was yesterday.  I knew she was behind, but seeing it with another SLP was heartbreaking.  I wanted to gather her up and leave so many times.  When the SLP came to talk to me, she said four words that I will never forget, and at the moment I instantly realized were true:  “Laura, this is apraxia.”

    My God.  How did I miss that???  However, I instantly knew she was right.  I was dealing with apraxia.
    Apraxia.
    Apraxia.
    Oh God no, not apraxia.  Why MY baby??  I cried in the car after the evaluation.  I sent a text to an SLP friend “She has apraxia.  I’m devastated.”

    My mother in law was watching my baby.  I went home and cried.  “Will she ever talk?” she asked.  “Oh yes” I responded.  She just has to face the biggest hills in order to do it.  I cried some more.

    I’m really not sure what’s worse.  Being a parent who doesn’t know what apraxia really is, or being a parent who knows exactly what the monster is, and just how hard she’ll have to work to overcome it.

    After the devastation….and to be honest I really did feel devastated, I mourned it, and then I became angry. I realized now why all the early intervention I was doing with her EVERY night wasn’t working!!  She had apraxia!!  Apraxia has to be treated differently.  You need a motor based treatment approach, not a language approach. Why didn’t I know the signs of apraxia in young children??  And you know what?  Once I put her with an SLP trained in apraxia, she made progress IMMEDIATELY.

    IMMEDIATELY!!

    I had a masters degree in this!!  It was unbelievable to me.  I reviewed all my early intervention conference notes and power points.  Not ONCE was apraxia mentioned.  It made me think, are early interventionists even looking at apraxia?  Why are we treating all speech delays the same way?

    After I got over being angry, I got determined.  This happened to me for a reason.  I had successfully treated two cases in the schools, but I needed to know the ins and outs of this disorder.  I’m an SLP and MY daughter had apraxia and I missed it.  I missed it!!  As I think of that right now I’m shaking my head.  That’s just not ok.  There needs to be more information out there.  It needs to be as well known to SLP’s as their everyday speech and language disorders are.

    That is my mission now.  I went to apraxia-kids.org and started signing up for webinars.  I went to every apraxia conference that came to Denver since that time, and was fortunate enough that the Apraxia National Conference came to Denver last summer in 2013.  I saw so many apraxia experts.  I found out about an apraxia intensive bootcamp.  I applied and I was accepted!  I go this July.   Last February, I gave my first ever professional presentation to a packed room of school based SLP’s.  I didn’t claim to be an expert, but I had come A LONG way since that mom crying in her car.  The interest was so great that people were sitting on the floor.  That’s how much SLP’s are craving this information.

    I asked my clinical director at the private practice to support me in my mission to specialize in apraxia.  She didn’t even blink.  I am so blessed to know her.

    I started this blog, and now I started a facebook page SLP Mommy of Apraxia.  I want to give simple tips on things to do at home, and also spread awareness.

    As for Ashlynn?  Well, she’s basically just pretty amazing.  She meets every challenge head on without
    frustration.  She overcomes every obstacle in her path, no matter how many time she has to try.  She’s speaking in 4-8 word sentences, started independently doing show and share at her school, and has many friends she plays and socializes with.  She still needs speech.  We still work everyday on correcting her errors and mapping the motor plan, but I know she’s going to be fine now. She’s not only my hero, but my inspiration and why I stand up on TODAY, May 14th for EVERY child who deserves a voice on this second ever Apraxia Awareness Day.

    Signs and Symptoms:
    – Little to no babbling
    – Only a few different consonant and vowel sounds
    – Inconsistent productions of vowel and consonant sounds
    – Disrupted prosody
    – Difficulty with co-articulation of speech sounds
    – Comprehends much more than they can speak

    Diagnosis
    – Only Certified SLP’s trained in this disorder should diagnose it.  Pediatrician’s and neurologists do not go through the extensive testing an SLP will do to provide a thorough differential diagnosis.

    Treatment
    – A motor based treatment approach to therapy must be initiated.  Therapy should be focusing on the planning, coordinating, and sequencing of speech sounds, usually with some sort of verbal or visual cueing system.
    – To find professionals in your area see this link: Apraxia Experts by state

    Most of all: Spread the Word!!  Knowledge is Power.

  • Did I cause her apraxia?

    Did I cause her apraxia?

    It starts with a question: 
    Did I cause her apraxia?  I know I’m not the only mom to wonder this, or worse, believe this.  This is where the guilt sets in.  It set in early and would tap on my shoulder in the shower, at lunch, or when I was trying to go to bed.

    Even though I’m an SLP, and I tell parents all the time that the speech delays are not their fault, I still felt like somehow I must have done something wrong.  Maybe my C-Section had something to do with it.  Could it have been the petocin, the pain meds, the stress? Maybe if I had only taken my pre-natal vitamins more strictly and just dealt with the fact they made me sick.  Then, after she was born, maybe I didn’t talk to her enough.  Maybe I didn’t give her enough attention.  Maybe it’s because I went back to work and she was sad her mom wasn’t there full time.  Maybe it’s because I talked to her TOO much.  I was trying TOO hard to make her talk she never had a chance to just be herself.

    Ugh, enough already!  It’s exhausting to feel this way.  It’s exhausting to go through every scenario in my mind wondering if there was something else I could have done, not done, tried to do.  She has apraxia and the truth is, there is nothing I could have done to prevent it.

    I know it’s not my fault, but….is it really not my fault?
    Now, I just have to believe this. That’s the hard part. I’m not alone because I read stories almost daily on my support group page of parents wondering if it was the c-section, should they have breastfed or breastfed longer?  Was it the food they ate, a cold they got, a toxin they were exposed to……the list goes on.  Theories with no basis that mothers will beat themselves up over.  Well, I want to tell you to stop it.  I know it’s hard, I know it’s still in the back of your mind, but if our thoughts become our truths, then this thought process is a cancer.   Further more, it doesn’t matter.  It doesn’t change the fact your child or my child has it.  What does matter are our actions right now to make it better.  To fight for our child and help them through it.

    How I actually banished the guilt
    I have finally shed my guilt over it, and the credit is due to my son.  My typically developing son who is so eager to be older and to grow up.  He learns things and picks up things without me literallymighty doing anything.  He is 18 months and already sings his ABC”s.  I have NEVER worked on this song with him. That’s how easy talking is supposed to be.  Despite my daily dose of the alphabet song with Ashlynn well into her third year, she only could sing it at 3 1/2.  My son, on the other hand, picked up the iPad, listened to it on repeat for a couple days, and started singing it.  I remember watching a video on facebook of a friend’s  2 year old when Ashlynn was the same age and crying thinking what a bad mom I was.  This little girl was younger than Ashlynn, singing her ABC’s and I’m supposed to be an SLP no less and still my little girl wasn’t singing it.

    Last night we were eating noodles for dinner.  My four year old with apraxia kept resorting to using her fingers, and I kept prompting her helping her to use her fork.  It’s hard to pick up spaghetti noodles that need to be scooped rather than stabbed.  I briefly looked back at my son in his highchair, and he was not only scooping up the noodles like a pro, but he was stabilizing the bowl with his other hand to steady it.  I looked at this situation in awe.  Again, I have maybe once showed my son how to scoop with a fork instead of stab, and here he was, doing it as well, if not better, than Ashlynn.  That’s how easy it’s supposed to be.  He picked that up without any special help from me, and even after years of practice with Ashlynn, she still has a hard time.

    I start to realize even more, her progress or lack of progress or slow progress is apraxia’s fault.  It’s not my fault or her fault.

    This morning I was asking my kids what they wanted for breakfast.  I threw out two ideas to my son and he shook his head and said ‘no.’  I have never taught him the word no.  I never had to teach him that instead of stomping his feet and throwing a tantrum, he could simply say, ‘no.’  He just does it.  There was a time that the child throwing tantrums instead of saying ‘no’ was my daughter at 2 1/2.  Myself, my husband, and my mother-in-law literally had to tell her for months to stop and say “no.”  Yes, that happened.  I actually had to teach a child to say “NO.”  Chances are if you have a child with apraxia, you have been there done that.

    If you are a mother and are looking for something to fault, then I suggest you personify apraxia and fault the disorder.  It’s not your fault.  You hear me?? It’s NOT your fault.  Even if you have two kids with it, it’s still not your fault.  Stop the guilt.  Stop the obsession with trying to figure out why your child has it.  It doesn’t matter anyway.

    I say this to you again as a parent AND an SLP; talking should be easy.  Though it is a highly complex skill that parents only fully realize when they see their child struggle, a child should talk regardless of what you did or didn’t do.

    I just want to say one more thing.  I think parents get the message that it’s their fault when the SLP (myself included) gives them suggestions for home.  These suggestions might be to make their child grunt or make some type of sound or word approximation everytime they want something.  Don’t let them get away with saying a sound wrong that you have heard them say correctly in therapy.  Don’t let them point and give them what they want when they can say a word for it etc. etc.

    I want to tell you we say these things not to fault you.  Parents of typically developing children didn’t make their child talk.  Their child just naturally did so.  Don’t listen to your family member, or well meaning friend or whomever, tell you it is your fault because you never made them talk.  Children don’t have to be made to talk.  I really  BELIEVE this now with my son.  My pivotal moment occurred when I realized I have never made him talk.  He talks so much I can’t make him stop talking. In fact, the one time I did try to teach him a word I was trying to get him to say “Jake” when requesting the show “Jake and the Neverland Pirates,” since Jake would be easier to say.  Well guess what?   He didn’t say Jake, he said pirates instead and has continued to do so.

    So there you go.  I am the same mom, the same SLP I was with him as I was with Ashlynn;  and I am here to tell you I tried my DANGDEST to get her to talk.  I did everything I knew how to do as a professional.  Guess what though?  She has APRAXIA.

    Yes.  Apraxia.  I’ve channeled all that guilt and blamed it on Apraxia.  I wish you the same!

  • God Bless Grandma Green

    God Bless Grandma Green

    Ashlynn’s Great Grandma Green has been out for about a week now visiting. This isn’t the first time Ashlynn has met Grandma Green. She usually comes out in October each year to stay with Ashlynn’s Grandma Smith who is of course her daughter. 

    Last year she bought Ashlynn a dress for her Birthday that was purple with big colored polka dots that was instantly her favorite. Unfortunately, at that time, Ashlynn didn’t have many words. She couldn’t really express how much she loved the dress (besides pointing to it when she saw it in the closet), she couldn’t say I love you, and actually, she couldn’t say grandma and mama the same way at that time, which meant she couldn’t even expressively differentiate between any of the maternal women in her life.
    This year though, is different. Oh what a difference a year makes. Grandma Green has only been here a week, but each day I picked Ashlynn up after work, she was sitting as close to her hip as possible. Today, circumstance would have it that she could go out to lunch with just her and her two Grandma’s. When she got back, she once again kept trying to get close to Grandma Green, asking her, “Read this book?” Or “Ashlynn sit here?” She still confuses names, and in a sentence may call Grandma “Mama” or Grandma Green (Dama Deen ) “Grandma Smith (Dama Smi).” We all would have to pause frequently saying, “wait, who am I?” 
    However, there was no mistaking tonight who made a guest appearance in her nightly prayers. We usually go through and say, “God bless daddy, mommy, Jace, and Sahara.” Then, depending on the day and who she was with, I add names of the Grandparents, Aunts, Uncles, Cousins, etc. Half the time I have to remind her to include Cody and I!
    Well tonight, I started out, “God bless…..” As I waited for her to fill in the blank, out popped “Dama Deen.” I couldn’t believe it! She has never added anyone novel before without me modeling it first! Heck, half the time she forgets her parents or Jace! Well, tonight, she finally had found the words to express her love for Grandma Green, in a simple prayer to our Heavenly Father. I really don’t know how much bigger it gets than that. 
    She still has few words, but with them, she expresses profound things.  God bless “Dama Deen.”

  • Ashlynn update 3:10

    Ashlynn said her first compound sentence yesterday. It took me so much by surprise that I almost ruined it by interrupting her.

    I picked her up from school asking the usual questions and getting the usual answers,
         “How was school?”
         “Good.” (Dood)

         “What did you do?”
         “Play” (pay)

         “Who did you play with?”
         “PLAY!!” she says impatiently.

         “I know, but WHO did you play with?” I asked.
         “Evelyn (Eveyin)

    As I was about to interrupt she said,
    “She’s nice and she’s funny (sunny) too.”

    A six word compound sentence!!! Music to my ears!

  • “You say it best, when you say nothing at all.”

    “You say it best, when you say nothing at all.”

    Today I took Ashlynn to one of my BFF’s bridal shower.  There weren’t going to be any other kids there, but Ashlynn is so good around a group.  When I think of people who have charisma, I think of great speakers and people gifted with words.  The Martin Luther King’s and the John F Kennedy’s of the world.  But Ashlynn makes me realize charismatic people don’t need to speak.  There is so much else to them.  Their presence, their unseen light that people can feel and gravitate toward, their inner goodness that shines brighter than words can resonate.  The latter I believe, fits my daughter.

    She is talking now in 3-4 word phrases, but in a group she gets shy and I have to prompt her to even utter one word responses.  Somehow though, she manages to light up the room.  Flitting by from person to person, looking at them with her curious, kind eyes; touching them with her baby soft hand.  Yes I’m in a room full of women, but even so, strangers reach out to touch her hair, take joy in her smiles, feel happy in her presence.  They hold her hands, give her hugs, and let her sit on their laps.   I know I’m her mom, but I’m telling you, I can see it and not just because I’m her mom.

    She is so special to me, and even though she’s not this outwardly verbal person, she somehow demands attention in the room.  Eyes are drawn to her, smiles are cast upon her, and mutual love is relayed from each other.  All this, without her hardly speaking a word.

    There’s a country song by Allison Krause entitled, “You say it best, when you say nothing at all.”  Ashlynn truly personifies this.

    Dear Ashlynn,

    “The smile on your face lets me know that you need me, there’s a truth in your eyes saying you’ll never leave me.  The touch of your hand, says you’ll catch me whenever you fall.  You say it best, when you say nothing at all.”

  • Lessons from a tricycle

    Lessons from a tricycle

    We bought a tricycle for Ashlynn three months before her third birthday. My husband and I took her to Toys R Us, excited, full of hope and expectation. I had seen two-year old children on Facebook gleefully riding their trikes with big goofy smiles on their faces, and I couldn’t WAIT to snap that happy gleeful face on my little girl.
    Pregnant with my son, we all left the store and I had visions in my head of me walking to the park, with her riding her trike in front. I would occasionally have to call for her to stop so she wouldn’t get too far ahead………….
    ….but it was me getting too far ahead that night. One year later, with aching backs and frazzled patience, my Ashlynn still can’t ride a trike.  She has made progress though and can now not only keep her feet on the pedals, but can also keep them “straight” on the pedals where her heel isn’t constantly coming into contact with one of the bars.  As for the actual alternating pushing motion, that is still to come.  
    You’d think she would be frustrated, but the opposite is true.  As kids whiz by on their bikes, she happily laughs, giggles, and asks me, “See bicycle mama?”  and then with determination in her face she gets up on her tricycle again, ready to practice. Like most other motor tasks, this one too will take time.  It will be a journey to success, but success will surely be there; waiting more patiently than me.
    However, I’ve learned success is never really about the outcome, just as riding a bike is never really about the destination.  Every bike rider will tell you the fun and the meaning are found in the journey.  The sights seen, the hills climbed, and even possibly the falls taken.  The lesson learned from the tricycle is more than just learning to ride.  It’s a metaphor for life, and of one thing I”m certain.  Ashlynn will always be a success because she has already learned: the fun is in the journey.