SLP Mommy of Apraxia

Category: apraxia blog

  • 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!
  • The journal entry I wrote when I learned my daughter had apraxia

    The journal entry I wrote when I learned my daughter had apraxia

    [wysija_form id=”1″]It’s November of 2017 and we are decorating for Christmas!  I’ve been trying to do some deeper cleaning too because man do things accumulate!  I happened to run across some old journals of mine.  This one struck me, I guess because since I wasn’t yet blogging, I had not ever gone back and read what I wrote around the time she was diagnosed.  It’s a good reminder of just how far we have come.

    10/4/2012

    Oh Ashlynn.  How my heart breaks that you have apraxia.  You are such a sweet, fun, and happy little girl, and it makes me sad you can’t tell me what is in that pretty head of yours. People always stop wanting to talk to you.  You smile, but no words come out. You’re talking so much more at home, and I work on your speech with you everyday.  I don’t want to burn you out or have you think I’m disappointed when I correct you, and so far you are agreeable to the help.

    I always want you to know I love you and I’m so proud to be your mom.  You are a wonderful big sister to Jace, so sweet, loving,and caring.  Jesus is in your heart and shines through you.  Together we’re going to beat apraxia.  I love you Angel, my little Ashlynn Kay.

    Love,
    Mommy

  • Famous Faces Walk for Apraxia in L.A’s Walk to Talk!

    Famous Faces Walk for Apraxia in L.A’s Walk to Talk!

    [wysija_form id=”1″]

    It almost seems crazy now, but just 3 years ago Apraxia didn’t have a face. There was not ONE well known person who had fought apraxia and overcome.  I was an SLP before my daughter was born and I can tell you after she was diagnosed, even though I was an SLP, the fear, worry, and guilt that gripped me hung onto me and wouldn’t let me go.

    It haunted me. It would keep me up at night.

    I would scour the internet but I could not find one famous person who had apraxia. Stuttering has faces.  Dyslexia has faces.  Down syndrome has faces.  Autism has faces of successful people living their dreams, but apraxia? Nope.

    The fear in my heart would threaten to overtake me at times.

    I remember wishing and praying with every ounce of my being that apraxia had a face.  Not even a spokesperson, but JUST a face that I could look at and say, “hey, that person had apraxia and look at them now.”  I tried to follow the advice of Ghandi who said “Be the change you wish to see in the world,” and I started my blog and my facebook page in an attempt to spread awareness.   I could have never dreamt or even prayed that awareness would come after I would read a Rolling Stone Article, an article whose first paragraph read like a case history for apraxia; and I would find myself standing in the rain that very night with my daughter waiting to ask Ronda Rousey if the speech impediment she had when she was little was in fact apraxia.  

    Since that time I have now met many, many faces of apraxia and I have found many of them in the unlikeliest of places. Mikey from Mikey’s Wish is one of them. This 16 year old boy from the UK started a Facebook page around the same time I started mine,  and he is probably one of my favorite faces who is always doing and writing amazing things and encouraging Ashlynn.

    This past weekend I once again packed my daughter up in tow on a wild adventure to go to L.A.’s Walk To Talk for Apraxia to benefit the Childhood Apraxia of Speech Association of North America.  Unlike the time I drove across town during rush hour and waited in the rain to see Ronda, this trip had more merit.  Ronda Rousey was confirmed to be a guest speaker and I knew if I didn’t go I would forever have regretted it.

    Upon arriving at the walk, we happened to park our rental car next to my fellow apraxia mom and admin to the group Ronda Rousey: #knockoutapraxia, Bree Vanegas who drove down from Inland Empire, California.  As we walked to the registration table together, I saw one of my bootcamp apraxia mentors and apraxia SLP extraordinaire Dave Hammer.  He had come out from Pittsburgh as a rep for CASANA.  His wife Kenda was also there and I was excited to see them.  Ashlynn loved Kenda and they bonded while walking around the park petting the puppies.

    Making my way through the park I spotted Alyson Taylor of A Girl with a Funny Accent, who I met in San Diego this past summer at the apraxia conference. I wanted so badly for Ashlynn to meet her then but we couldn’t make it work.  This time was different and was special for all of us.  Alyson immediately dropped to Ashlynn’s level and told her that she too had apraxia.   Ashlynn doesn’t always have the words when she’s put on the spot and gripped with anxiety, but I saw the spark and glimmer in her eyes.

    As I meandered over to get coffee and check out the face painting station, I saw a cute fluffy white dog.  As I looked up I immediately recognized actress Gage GoLightly, who gave a revealing interview about growing up with global apraxia.  I went over to introduce myself and asked to take a picture.  Ashlynn was shy at first, but when Gage asked her to pet her dog she had Ashlynn hook, line and sinker. Gage was such a real, down to earth, and sweet person.  I was immediately struck by her genuineness and her joy at supporting a cause she felt so close to.  She laughed about still being severely dyspraxic and practically doing the splits in the shower the other day.  I smiled at her story and marveled about just how much she reminded me of Ashlynn and in that moment I knew Ashlynn was going to be okay.  How do you thank a person for giving you that moment of peace and comfort when they didn’t do anything but be themselves?  It was amazing.

    As I was talking to my friend, I ran into the L.A Walk Coordinator Jaclyn Senis who made all of this happen!  Meeting fellow walk coordinators is in may ways, like looking in the mirror.  We all spend countless (unpaid) hours devoting every second of our spare time to creating an event that is memorable and meaningful to every child with apraxia that attends.  This was her first walk, and it fell on her BIRTHDAY!  I think that should speak volumes as to the character of people who volunteer to coordinate a walk.

    Soon there was buzz Ronda has arrived with her family and supporters.  Nervously I made my way across the grass to the tent.  I immediately spotted Ronda’s mom, who I instantly recognized from social media. She apparently recognized me or Ashlynn too because she flashed a large smile and waved in our direction.  All my nerves disappeared in that moment because I recognized her not as “Ronda’s mom” but as a mom who understood me without ever even meeting me.

    As we rounded the corner of the tent, Ronda stood in the middle.  When I met her the first time I had no idea who she was, but this time I think I was not only star struck, but amazed she was actually HERE.  Ronda Rousey was HERE at an apraxia walk of just a few 100 people and was going to speak.  How did this happen?  I stared on incredulously.  Ashlynn immediately freaked out and got shy.  She basically ran away.  Haha.  Ronda said she had her “balgrin” in the car and asked if she should get it.  I immediately said yes and  if you don’t know what that is….read her book.  It’s amazing!

    When Ronda returned with the balgrin, the ice was broken and Ashlynn immediately came up and held it.  I marveled at the fact that ALL three adults with apraxia had managed to cut through Ashlynn’s anxiety by finding something to make her feel comfortable with first.  Alyson dropped down to her level, Gage offered her puppy, and Ronda offered her “balgrin.”  This is home people.  When I say I want to find Ashlynn’s tribe…..this is EXACTLY what I am talking about.

    The speeches by Alyson and Ronda were both incredible in VERY different but wonderful ways.  No two people with apraxia are the same, and as Alyson mused in her blog post, “There’s no right or wrong way, our fights were won in two different ways.” 

    Ronda, Gage, Alyson, EVERYONE walked the walk around the park.  In that moment in this small park in Santa Monica on this fateful day of November 5th, 2017;  there was no dumb kid or smart kid. No MMA star or actress.  No successful or not successful person.  There were just families and their children walking and raising awareness with the shared belief that EVERY CHILD DESERVES A VOICE.   On the walk Ronda took Ashlynn’s picture on her cell phone as I talked to Gage and we both remarked at the “goosebumps” we got while talking to each other.  Ronda’s mom talked to Alyson’s mom and the humanity of our shared experiences blurred out boundaries of fame, wealth, or status.

    There is the expression about pinching oneself to make sure it is real.  I literally did this during this moment in time.  It was THAT incredible and unreal.

    You know, the world is so much smaller than we think.  We are all so much more connected than we ever dare to imagine.  I’m learning every person, on every end of the country or even globe, famous or not, is walking a journey called life full of love and laughter, but also bumps and pitfalls.  The human experience is a shared experience that transcends money, wealth, power, or race.  We all have a story to tell, and we are all shaped by our story. We are all souls looking for a connection.  Olympian, Judo fighter, author, writer, actress, SLP, teacher, or any other walk of life; our lives take on meaning when we can connect with others who share a familiar story.

    What started as a mission for hope, turned into a lesson about life on one sunny day, in a beautiful park in Santa Monica, California.

     

  • 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.

     

  • The Hulk and Rousey on struggling to speak.

    The Hulk and Rousey on struggling to speak.

    During an episode of “Battle of the Network Stars” Lou Ferrigno and Ronda Rousey shared a touching exchange about their childhood disorders and how it made them stronger.

    Ferrigno, best known as the Incredible Hulk, inquired into famed MMA star Ronda Rousey’s life.  He questioned about the fire she had inside of her and wanted to know where the first flame was stoked. In an incredibly honest moment, Ronda tells him that she grew up with apraxia, a childhood speech disorder in which she would talk;  but the message in her head was different than what came out of her mouth and would sound like jibberish.

    She continues to reveal she was made fun of for having trouble speaking and eventually venting that frustration physically.

    Speaking as a parent of a child with apraxia, my heart stood still.  Hearing the word “apraxia” on national television brought instant tears to my eyes.  No one knows the struggle it is unless you have it or live it.  There is so little awareness that even many professionals don’t know it or its presentation. I’m a walk coordinator for the disorder in a large metropolitan city and the local news informed us it wasn’t newsworthy.

    In that one moment, that one SECOND in time, the apraxia community blew up with excitement.  A video was posted that has been viewed 5K times in one day! That is the power of having a celebrity speak out about a cause.

    Lou Ferrigno again brought tears to my eyes when he said,

    “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.”

    I watch my child do this very thing every day.  I watch her struggle to do a basic human right that comes so easily to everyone else.  Something that’s so important it’s our first amendment in the United States.

    Speak.

    Watching Lou and Ronda in that moment, I realized that overcoming adversity will put that fire in her belly just like it did Lou and Ronda and we can show our children their story to inspire them and inspire us to become our best selves.

    As Ferrigno pointed out,

    “We’re only here for a short time.”

    Make each moment count.

  • 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.