SLP Mommy of Apraxia

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  • 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!

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    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.

     

  • To the mama who feels she is never enough: Be present

    To the mama who feels she is never enough: Be present

    When my kids were both under the age of 5, it would be a gross understatement to say I was “tired.”  With one kid at least you could nap with them; but with two kids, naps became a thing of the past and lack of sleep reigned as the new order of the day.

    My oldest child has special needs, and though that shouldn’t technically matter; it amplified stress, lack of sleep, and anxiety.

    I remember many people telling me various versions of the following sentiment:

    “Enjoy it while they’re little.”

    In fact, I was told this as early as my first born daughter being 2 weeks old when we took her out to dinner for the first time.  I remember being annoyed at the woman who didn’t understand what a chore it was to even get out of the house and that of course I was enjoying it!!

    “Enjoy it while they’re little.”

    I would take it to heart and admonish myself for being angry, stressed, or upset that day because one day they wouldn’t be little anymore and all I would have was regret.

    I remember stumbling upon this great meme and adopting it as my mantra.

    “The days are long, but the years are short.”

    I would repeat this mantra in my head when any difficulty arose.

    Need to rush my daughter to school on time.  Everything is packed and ready to go. Shoes on, coats on, hats on….and, somebody pooed their pants and needed a diaper change.

    Ugh

    “The days are long but the years are short.  The days are long but the years are short.”

    Youngest son is old enough to start fighting with oldest sister while I’m trying to listen to my daughter’s speech therapist give me homework for the week.  Youngest runs out of the room, out of the building, and with my anxiety, probably into oncoming traffic.

    “Excuse me, I’m sorry.  I just need to grab him.”

    “The days are long but the years are short.  The days are long but the years are short.”

    Church on Sunday and youngest son is running in and out of aisles while I do my best to use my stern yet whispered breath to bring him back.  Oldest daughter, jealous of the attention starts to act up and run out too.  After wrangling them both out of church full to the brim with embarrassment, I would silently curse in my head,

    “The days are long, but the years are short.  The days are long, but the years are short.”

    Park on a weeknight finds my oldest daughter making friends, and my son who felt left out.  Oldest daughter has special needs and motor skill issues so I’m hovering make sure there is not some horrific accident where she falls and leaves her with a broken limb.  Youngest son feels sad from the lack of attention and pushes down a baby trying to play with playground equipment he wanted.  Mortified and angry I leave the park with both kids in a football hold screaming, and in my head I was repeating,

    “The days are long, but the years are short.  The days are long, but the years are short.”

    Can I tell you a secret though? I still feel like I have these days and my kids are growing older now.  They are out of the toddler stage.  I will no longer take a kid to their first day of preschool or Kindergarten.  That season is over.  However, some days still feel extremely long.  I don’t think I quite realized a season was over until I was watching a young mother wrangle her two kids under 5 the other day.  Her hair was disheveled and she breathed deep breaths as she tried to manage these two beautiful humans she loves more than life itself.

    I found myself smiling at the chaos.  Her chaos, and thinking,

    “Oh wow.  Enjoy it while it lasts.”

    I stared at her stress and wistfully thought in my head how I will never have that again. I decided to empathize with her and told her I understood her stress and to just remember,

    “The days are long, but the years are short.”

    “That’s what they tell me,” was her reply, as she scooped up her children and told me goodbye.

    Motherhood, parenthood, is HARD.  It is this crazy paradox of loving another human being more than yourself, more than ANYTHING; but then being stressed and crazy, and wishing for something else, anything else, in that moment.

    The mother with a newborn, exhausted from the ordeal of childbirth and lack of sleep is envied by the woman who doesn’t have kids, while she herself envies the mother of toddlers who is able to take a moment and sip a latte.  The mother with a toddler envies the simplicity of having a newborn while being stressed by chasing a busy toddler.  The woman with a teenager, seeing the mom with a toddler, remembers that smaller kids have smaller problems and finds herself missing the days when her worst fear was that her child would fall off the jungle gym instead of making a poor choice like drunk driving that could end with some very big and serious consequences.

    I think we as mothers need to give ourselves more grace.  We need to allow and accept our humanity.  We need not feel guilty and just know that EVERY stage of motherhood is hard, but also wonderful at the same time.  Every stage, every season, has this push-pull of enjoying it and feeling happiness you have never known, and yet surviving it all at once.

    I don’t think the message should be “enjoy it while it lasts,” even though that is what I myself even thought when watching a mother and her two young kids a week ago. I think the message all mothers need to know simply this:

    Be present.

    If you are present, you WILL enjoy and not miss all those little moments with your children that bring tears to your eyes.  If you are present, you will also understand that we are all human, and some days are more difficult than others; but that doesn’t mean we love our children any less or would change our life.

    Be present.

    Be present and live every moment with you children, good and bad.  In this way, we don’t need to feel pressured to “enjoy every moment,” because the human experience itself is not enjoying every moment.  That’s ridiculous.  The human experience includes happiness, but also sadness, pain, anxiety, and uncertainty.  Our children don’t need us to be happy or perfect all the time, just that we were there,  by their side,[wysija_form id=”1″] through it all.

    Be present.

    That’s my new message.  Yes the days may still be long and the years may still be short….and yes you may look back on this time in your life now and urge yourself to “enjoy it.”  However, life is to be LIVED.  To be EXPERIENCED, and not every experience is joy.  My message this short journey through motherhood has taught me  is to just simply,

    Be present.

    No guilt.  No shame. No apology of emotion. Maya Angelou once famously said,

    “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

    Kids will not remember everything, but they will remember whether or not you were there.  Did you show up?  Were you there to talk to when they needed you?  Were you plugged in?  Did you love them through all of their actions and emotions, good and bad?  I no longer believe we need to “enjoy” each moment; but I do feel strongly, we need to be present in it.

    Be present Mama.  Be present. And know by being present, you are enough.

     

     

     

     

     

     

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  • Halloween Trick or Treat Cards

    My friend and apraxia mom Shelley Kelley is so awesome she makes Free Halloween Trick or Treat Cards for kids to use if they still can’t say “trick or treat” yet.  I put it on my teachers pay teachers since I can’t add a file to my facebook page.

    Enjoy and Happy Halloween!

    Trick or Treat Cards!

     

  • Does my child have dyslexia?

    Does my child have dyslexia?

    If you have a child with a speech or language disorder, you have probably heard that they are “at risk” for future learning disabilities.  What are the prevalency rates though, and what does the actual research tell us?

    A study by Catts (1993) is a frequently cited study and found that,

    The literacy outcomes of children with SSD (speech sound disorder) have provided convincing evidence that children with SSD and concomitant LI (language impairment) (SSD+LI) have higher rates of literacy difficulties than children with isolated SSD.

    So what does this mean?  How high are the higher rates and what exactly are “literacy difficulties?”

    In 2004, Lewis et.al followed 10 children diagnosed with CAS (Childhood Apraxia of Speech) and compared literacy outcomes for them into the school aged years along side kids who were diagnosed with SSD (speech sound disorder) and another group who had SSD + LI (language impairment). At follow up, all 10 children with CAS demonstrated co-morbid disorders of reading and spelling.  This was a small sample size, but let me reiterate, ALL TEN children with CAS had future problems with reading and spelling.  Co-morbid rates though can’t be 100% right?

    A study in 2011 by Anthony et.al found that,

    Children with SSDs are at increased risk of having difficulties learning to read (Bird, Bishop, & Freeman, 1995; Bishop & Adams, 1990; Carroll & Snowling, 2004; Catts, 2001; Larivee & Catts, 1999; Raitano et al., 2004; Roberts, 2005; Snowling, Bishop, & Sothard, 2000). In fact, between 30% and 77% of children with SSDs struggle with reading (Bird et al., 1995; Larrivee & Catts, 1999; Lewis, 1996; Nathan, Stackhouse, Goulandris, & Snowling, 2004). Children with SSDs have as high a risk of developing a reading disability (RD) as children with a family history of RD (Carroll & Snowling, 2004), which is remarkable in light of heritability estimates for RD that range from 40% to 70% (e.g., Friend, Defries, & Olson, 2008; Pennington, 1989). The risk of children with SSDs having literacy problems increases with comorbid language disorders (Nathan et al., 2004; Raitano et al., 2004), severity of the SSD (Nathan et al., 2004), persistence of the SSD (Nathan et al., 2004; Raitano et al., 2004), and patterns of articulation errors that do not follow developmental trajectories (Leitão & Fletcher, 2004; Leitão, Hogben, & Fletcher, 1997; Mann & Foy, 2007; Rvachew, Chiang, & Evans, 2007).

    A study by McNeill (2009) found:

    The results indicated that the CAS group had inferior phonological awareness than the ISD and typical development groups. The CAS group had a greater proportion of participants performing below their expected age level than the comparison groups on phonological awareness, letter–sound knowledge and decoding tasks. There was no difference in the performance of the CAS and ISD groups on the phonological representation task.

    In this study, speech sound disorders are all lumped together.  Speech sound disorders include: phonological disorder, articulation disorder, and apraxia.  Depending on the study, anywhere between 30% to as high as 77% of children with a “Speech Sound Disorder” have difficulty learning to read.  That’s the quite the gap right?  There is almost a 50% discrepancy between studies.  So what gives?  Who is more at risk?

    We know every co-morbidity(which is a fancy word for additional diagnoses) increases the risk.  This especially includes children who have a language disorder.  This includes kids diagnosed with “mixed receptive/expressive language disorder,”  SLI (specific language impairment), language disorder, or language processing disorder

    I also bolded the phrase “patterns of articulation errors that do not follow developmental trajectories,” because up until 2007, apraxia was not officially recognized as a distinct childhood speech disorder by the American Speech Language Hearing Association. This is only relevant because the studies this data is taken from all are around 2007 and before; and if you know what apraxia is, it is a speech sound disorder, but also a motor planning disorder that does not present with patterns of errors and may or may not follow developmental norms for articulation.  In the above information, that EXACT description increases the risk for a reading disorder.

    The most recent research is now indicating dyslexia is a phonological processing disorder that parallels the core phonological deficit in speech sound disorders (Anthony et al., 2011). This research is groundbreaking because before we knew the risk for reading disability was higher in kids with SSD’s, but we didn’t have research telling us why.

    The bottom line though is this.

    Any childhood speech and language disorder increases the risk for a future reading disability.

    It would appear that children with CAS are at an increased risk, and those with CAS plus a language impairment or comorbid phonological disorder, are even more at risk.

    Are all reading disabilities then dyslexia?  The short answer is no, but dyslexia is by far the most common reading disability and can manifest in varying severities.  If you read research articles, reading disorder and dyslexia are almost synonymous.  For example in the 2004 article by Vellutino et al., this is the opening statement.

    We summarize some of the most important findings from research evaluating the hypothesized causes of specific reading disability (‘dyslexia’) over the past four decades.

    According to the National Institute of Child Health and Human Development, “reading and language based learning disabilities are commonly called dyslexia,” and according to the International Dyslexia Association,

    15-20% of the population has a language-based learning disability. Of the students with specific learning disabilities receiving special education services, 70-80% have deficits in reading. Dyslexia is the most common cause of reading, writing and spelling difficulties. Dyslexia affects males and females nearly equally as well as, people from different ethnic and socio-economic backgrounds nearly equally.

    The schools do not diagnose dyslexia, although they give all the same tests that learning centers give to diagnose it.  Schools are an educational entity, and thereby give “educational” diagnoses. The educational diagnosis for dyslexia is specific learning disability.  Knowing prevalency data and co-morbidities better equips special education teachers, parents, and other professionals to implement treatment strategies that can include pre-cursory and preventative measures to address potential and additional difficulties later in the child’s academic career.

     

  • Local Walk for Apraxia gives a voice to children who struggle to find theirs.

    Local Walk for Apraxia gives a voice to children who struggle to find theirs.

    This year the Denver Apraxia Walk was held August 5th, at Clement Park in Littleton.  Apraxia of speech is a severe speech disorder in children that makes the act of learning to speak very difficult.  Many endure years of speech therapy struggling to find their voice. I have to say this year was the BEST WALK YET, but it wasn’t do to me.  Denver has the most incredible, talented, and driven parents I have ever met.

    When I started as walk coordinator, I had no idea what I was doing.  As the years have gone on though, more volunteers have stepped out to help and I realized every person has a unique and different perspective to bring and if each person is heard, the walk thrives.  For example, to me, a successful event always and I mean ALWAYS, has to have a face painter.  If my face was and had been painted, the day was nothing short of AWESOME.  Face painter Stephanie Harris from Color Me Fancy was touched.

    That’s not true though for other people.  Katie Oberlander, a Denver mom told me she always cared less about a face painter, but had they had a Disney Princess there, now THAT was an event.  Local company Wands and Wishes provided princesses and even Captain America! 

    Another volunteer loves clowns and balloons!  To them, a successful and memorable event includes clowns.  I personally dislike clowns.  There are two groups of clown people.  Those that love them, and those that are terrified of them.  I fall in the latter.  I have always hated clowns.  I don’t like I can’t see their face, I don’t like that they make me feel awkward, yeah…clowns.  However, as coordinator, I need to realize other people DO like clowns and they make an event special for some.  This year, mom Gina Berrecil said the amazing clowns from a local foundation helped her kids overcome their fear of clowns.

    Silent auction

    Having a group of volunteers is really the more the merrier.  We can cover a lot more ground and a lot more interests when we have a diverse group of people representing all perspectives.  If someone has an idea, I honestly never try to shoot it down because who am I?  I’m not them, and if they think something is cool and important, there is sure to be others who feel the same.  A silent auction was new this year and was incredibly successful!  A local Denver mom Amanda stepped up to coordinate it and raised over 3K!

    One thing everyone can get behind though is celebrating the kids.  I made a point to tell every kid with apraxia that I saw that it was their special day. I wanted them all to feel special. I want them to feel like this day was created for them, and it doesn’t matter how they celebrate it.  Many kids are not only surrounded by family, but their speech/language pathologists come too to celebrate them for their hard work like Mary Lou Johnson.  “It means so much to have Mason’s SLP here supporting him,” said mom Amanda Chambers.

    The walk is about raising money for CASANA, the Childhood Apraxia of Speech Association; however; my biggest goal is about the kids. That is what I want these kids

    to feel.  I don’t want them to feel it’s a day about conformity and trying to be normal.  I want them to just be themselves, whatever that looks like; and then I want them to be applauded for having the courage to do that.

    Normal is boring.  Besides.  What is normal?  People think I’m “normal” and I hate clowns, can’t stand people in masks, and have a bee phobia.

    The walk for apraxia is not just about embracing differences, it’s celebrating them!  Local mom Tracie Horsch said,

    “The walk means a lot to our family in that it celebrates all of these children and their accomplishments as they find their voice.  Coming together with “our people” helps us to know we are not alone on this journey.”

    We may not have gotten news coverage or a news article, so I’ll write it myself.  I personally find events like this very news worthy and something I would like to see on local news.  Would love your comments if you agree.

     

    A big thank you to the numerous local Denver sponsors who stepped up this year to give a voice for those struggling to find theirs.  Our goal this year was to raise 30K, and as of today we are 5k short.  If you want to donate to these children and help them find their voice, follow this link: Denver Walk for Apraxia