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SLP Mommy of Apraxia: May 2014

Wednesday, May 28, 2014

For once I went to school, and I heard only positives

Let's face it.  Being a parent is rough.  Whether you have a child with special needs or not, we all want for their happiness, that they will feel successful, that they will be confident, and that they will never hurt.  Of course we know that without trials they cannot fully appreciate the successes, without sadness they could never fully experience complete happiness, without hurt they simply wouldn't be human. 

School has been an absolute blessing for Ashlynn, my social butterfly.  She never let her limited speech hinder any of her relationships.  In fact, her first word was 'hi' and it was all she needed.  She could and still can engage anyone with that simple word and her beautiful smile, and they are hooked. 

But

That's why it was so hard to go to IEP meetings, parent teacher conferences, and get reports from her teachers and therapists.  No matter how many positives were relayed, we always sit there waiting for the

But.

She is so happy and works so hard,

But

She is friendly, sociable, and loving

But

She is an absolute joy

But

I'm not gonna lie.  The "buts" hurt.  It really doesn't matter if they are framed around 100 glowing adjectives, the "buts" can be overwhelming.  Especially when for one child she needs a

speech therapist
occupational therapist
physical therapist
special education teacher
social worker

They all come with their own set of "buts." 

Today though was different!!  Today, her last day of Pre-K, there were no "buts."  Today, as I picked her up, I heard this:

Teacher: "I have been blessed having Ashlynn is my class."
Social Worker: "Ashlynn is the sweetest, kindest child. She is friends with everyone, and everyone is friends with her."
Another parent: "My son told me this morning he was really going to miss Ashlynn. When I asked him what he would miss, he told me her laugh."

It just brings tears to my eyes. There's no standard score or percentile for that....but if there were she would be way above average. 

  
Ashlynn is my sweet, kind, loving, daughter who blesses those around her with her smile, her laugh, and her friendship.

No buts about it.





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Wednesday, May 21, 2014

Grouchy ladybug activity for easy repetition practice for apraxia.

I have a little secret.  I'm a speech/language pathologist, but at times, I'm artistically challenged.  I
 can't tell you how many times my kids have laughed at my pictures.  I do think back to grade school and I remember getting mad about art activities telling my teachers I would never need to use art EVER in the real world.

Oh life sure has a sense of humor!

Being artistically challenged however, doesn't mean I am creatively challenged!  With apraxia of speech, you have to get creative.  Unfortunately, there are two facts about apraxia that can be challenging.

Fact # 1
Apraxia requires therapy based on motor learning theory (ASHA, 2007).  This means that children require a few therapy targets per session while hitting A LOT of repetitions.  This is what is referred to as "mass" practice.

Fact # 2
Having to say multiple repetitions is not always *fun.*

These two don't really go together, but it's up to the SLP to make it fun with a little creativity!

This doesn't mean I'm not guilty of busting out the cards and doing drills; however, I really try not to do this very often.  At most, I use this as a warm up.  Kids quickly tire of articulation cards and lose motivation.  It happened to my daughter.  Her initial sessions were set up with 15 minutes of drill and then 15 minutes of  a functional scripted play activity.  However, after a couple months, the sessions started turning into 25 minutes of drill and only 5 minutes of play because it was taking her longer and longer to practice the same old cards week after week because she was bored and losing interest!

There are many games that lend themselves to repetitions, but today I'm going to introduce you to a quick little activity that you can use with almost any target and that kids absolutely LOVE.  The materials you need are:
"The Grouchy Ladybug" book by Eric Carle
Construction paper
Glue.

Yep, that's it.  Pick the therapy target, and you're on your way.  This week my target for one client was "ladybug." ( This is a C1V1C2V2 + CVC syllable shape), for another it was "bug" (A CVC syllable shape), for another it was "grouchy" (for working on 'r' blends), and yet another had to say the entire "grouchy ladybug."  While reading, I stop and pause right before their word.  For example, "Oh, you're not big enough said the grouchy lady ____."  I then wait for the kiddo to plug in their target cueing and correcting as needed. The word "Grouchy Ladybug" is repeated 33 times in this book!  That means before you even start the activity, the child has already had 33 instances of practice!


To read about getting practice in with repetitive books see here: Repetitive books great for apraxia therapy

I also want to mention, that most Eric Carle books are also available in Spanish, so for you bilingual SLP's out there; this is also a great activity to do with them!


Now for the activity.  Feel free to laugh.  I know my strengths and I know I'm no artist, but let me tell you, all my kids LOVE doing stuff like this.  I drew an (admittedly sad) outline of a ladybug using red construction paper, and had the kiddos glue on black spots.  Every time they glued on a spot they had to say their target word 5 times.  There are 20 dots on this ladybug, which meant they said their target sound 100 times! It didn't matter that the ladybug wasn't perfect, kids just love crafting their own creations and you can feel good about getting a TON of repetitions in!

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Wednesday, May 14, 2014

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.

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Saturday, May 10, 2014

A Mother's Day tribute


It starts with a dream.


You meticulously plan for the arrival.


You fall in love again.


And again, forgetting any pain you previously experienced because you are overtaken with love.


You sacrifice your sleep, to ensure theirs.


And though you are sleep deprived you hug them tighter because you know these moments won't last.


You diaper them and bathe them through tired eyes.....


but you still smile because there might not be anything cuter than them in their hoodie towel.

Until they giggle......


And giggle more....


And you thank God for them as you kiss their open smile.

You feed them before yourself.


Bundle them up to keep them warm.


And you cry like a baby when you leave them to go back to work.......


........and when they graduate to their big bed..........


...........and the first time they put their backpack on ready for school.


You hope to instill a love of learning.


You delight in their first ride on the swing.


You transport them to their swim lessons.


You pack up bags upon bags to give them adventures


And your heart melts when you see your big strong husband wrap his arm protectively around them.


You instantly understand the true love of your mother...and her mother


And you look on incredulously when you remember the four year old with her parents in this picture.....


Is now the mother of the four year old in this picture with her grandparents.


This Mother's Day, let us honor that which unites all mothers! 

Happy Mother's Day!





































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Wednesday, May 7, 2014

The day I realized apraxia has been a blessing.

Yes, you read the title correct.  I just called apraxia a blessing.  It took me a long time to get to this point.  I certainly didn't feel it was a blessing here 2.5 years, or here, New worries, or here IEP on the other side of the table, or here Background and suspicions.  I remember shouting "I HATE APRAXIA" "APRAXIA SUCKS!!" everytime I watched my daughter struggle.  Slowly but surely though, the blessings started to outweigh the diagnosis; in fact, blessings started to develop out of the diagnosis.

I was talking to a mom the other day from Georgia at Mommy Square, and she told me she has met a lot of friends because of apraxia.  It got me thinking that I have too.  I have a mom from Syracuse with whom I formed a connection because of our commonality of being mom's who were ALSO SLP's.  We shared our frustration at the lack of knowledge surrounding apraxia, and our mission to be educated on it.  I have a mom from Utah who has a daughter the same age as mine with apraxia.  We blog, collaborate, and fight apraxia together.  I met Sharon Gretz,  the founder of CASANA, the non-profit behind the apraxia-kids website.  Meeting her was a pivotal, inspirational moment in my life.

All these moms have one thing in common.  They all are incredible, inspirational women, and they all go through extraordinary lengths in the names of their child.

I am blessed to have found and to know each of them.  I am blessed to understand from an emphatic position what it is like to have a child with apraixa.

I am blessed that I was chosen to be her mommy, because through her I have learned the true meaning of perseverance and bravery by seeing them through the eyes of my daughter.

I am blessed because we have so many people in her corner.  Grandma's, Grandpa's, Uncles, Aunts, & cousins all cheering her on.

I am blessed because out of the struggle has come joys I could never have dreamed of or experienced myself.

I am blessed because though her dx could have brought distance between my husband and I, it only brought us closer toward the common goal of beating it.

I am blessed because my husband confided one day that when he starts to feel bad about the hand Ashlynn was dealt, he always sees her overcome it.

I am blessed because if not for her, I wouldn't have set a goal to specialize in apraxia, and in turn, I may not have met all the wonderful people I have met, or been able to treat all the wonderful children I am priveleged to treat.

I am blessed because I never take for granted one word, one sentence, or one song.

I am blessed because I know other parents who feel the same.

I am blessed because apraxia has taught me gratitude.

I am blessed from simply being her mother.

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Friday, May 2, 2014

To say your name

Most people might take for granted their name. You have a name, you've always had a name, and basically that's that.  Kids with Apraxia have a name too, and they know it just like you.  There is, however, one difference.  Many can't say their name at first. Can you imagine?  How many times are little children asked their name?  It's basically the first question strangers ask them right up there with how old they are.

Every child deserves a voice, and every child should be able to say their own name. A name is not only your identity, it gives a symbolic representation of YOU.  A verbal representation of letters and sounds that come together and allow you to say YOU are YOU. A name carries history, geneology, and meaning to the carrier.  It's so important, that even if one vowel in someone's name is mispronounced, the offended will quickly correct the offender. Just recently in the news, John Travolta mispronounced Idina Menzel's name when introducing her at the Tony Awards read here and she reported that it threw her off for like eight seconds and she had to give herself a pep talk saying "stop worrying about your name and sing this song."

So...needless say.  A name is important.

I remember back to the early days of speech/therapy.  Her private SLP had a great idea.  In those days she was only working on CV and VC syllables.  We could get Ash, and we could get In.  We settled for Ashinn.  I actually was thrilled then when she said it.  After that, it took repetition after repetition to actually put the sounds together correctly and then more practice with her actually remembering and saying it on command.  I have a note from her school SLP frequently about how they would go around her preschool last year and practice saying her name when people asked her. 

I was okay with this, because as an SLP I know that L within the realm of what we consider a later developing sound.  Basically, it's still developmentally appropriate not to have an L at three years old, apraxia or not.  

Now Ashlynn is 4 years 7 months.  Just a few days ago my husband and I went to the grocery store and the clerk asked her, "What's your name?"  We waited for her to respond and she said "Ashin."  The clerk as expected said, "Oh Ashley, what a cute name,"  and as expected without even thinking, my husband and I both followed up, "Yes, AshLYNN."  

Then came today.  We were looking at pictures in our photo album that I was putting away.  In it, I had some pictures of her friends from school.  I was quizzing her on their names and she could tell me most of them.  We came to a girl named "Calista." Very deliberately, she said "Ca-Lista"  

My head whipped around.
"Ashlynn!  Did you hear the L sound in her name??  You said CaLista!!  Say it again, CaLista."
"Ca-Lista."  
"Ashlynn!  Do you realize that sound is in your name??  Say AshLynn."
"Ashhhhhhh-Lynn."  

And there it is.  Today, May 2nd 2014, Ashlynn finally said her name with all the sounds.  So funny how these small things bring big tears.

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Thursday, May 1, 2014

Calling all apraxia bloggers!! Let's link up for Apraxia Awareness Day!!


I read your stories daily.  I feel your struggles, I rejoice in your triumphs, and I nod my head in understanding.  You are my fellow bloggers.  I read your blogs like I'm checking the morning paper.  I read your tears and your smiles about your struggle with apraxia, and I share them with you about mine with my daughter's.  We read these stories as separate entities.  We close the blog and move onto the next, or we write our own story for that day.  What if we all wrote our story together?  What if we all weaved our experiences into an apraxia tapestry?  That is my dream in the Apraxia Awareness Link Up for Apraxia Awareness Day on May 14th.

I ran across the quote:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.
It's up to YOU and ME to spread awareness about apraxia.  It's only the second annual apraxia awareness day.  I am an SLP and many educators haven't even heard of apraxia and many SLP's don't know how to treat it correctly.  I want to read your stories.  I want to hear how you are spreading awareness and I want to link up with you in solidarity!

Please feel free to link up any posts related to Apraxia.  It can be anything! You fears, your successes, your diagnosis, your Apraxia Awareness Day Post, helpful tips, whatever!!  We want to see it! We want this to be a place to raise awareness for Apraxia, as well as to let others know they are not alone.  We only ask that you link back to link up at the bottom of your post!



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