Wait...is she the ....R word?

Oh apraxia is a sneaky devil.  For so long I prayed to just hear her sweet voice say what she wanted to say.  At some point she started imitating really well.  She didn't really call out to me "mama" and she didn't really offer up "I love you" but she could say it in imitation, and this was good.  This was very good...because NOT hearing those words was devastating.

I still hear my husband putting her to bed at night.

Husband: "I love you Ashlynn."

Giggles

Husband: Say, "I...love....you."

The progression was slow, but she would do it, in her own way using word approximations.  Never spontaneously though.

The last two years are a blur of therapy appointments, speech practice, working toward the next goal. Despite what I would see at home, she would never show her skills to others so anytime she did something new at school or in therapy and they were so proud, I was just left giving a small thanks that at least she's showing what she does at home.

Family who knew her began understanding her more and more.  However, those who didn't still questioned what she was saying.  Disappointing to say the least, but the honest feedback was a necessary reality check.  I know what she's saying 99% of the time, so it sucks when even her school SLP rates her at about a 60%.  Oh well.  I need honesty, and that's honest.

On her fifth birthday though, it all started to change.  I posted a video of her, and the feedback was incredible.  Everyone could understand her!!  Other people were validating what I have seen for so long!!

A progress note from school only lists a few artic errors: inconsistent 'l' and 'l' blends, a frontal lisp 's' pattern, and occasional errors with multi-syllabic words and consonant clusters.  Of more concern now are expressive language delays including: grammar, sentence formulation, and word finding.

That's when it hit me.  Ashlynn is almost "resolved" from CAS.  Her motor plan (I'm tearing up), has caught up.

What?  Could it be true? Can I actually start to even consider my daughter might be working toward resolved CAS?

How could that be?  It's only been two years, but then I remember the struggle has been so much longer.  Is this really the girl who could only say "hi" and "a dah" for everything?  The girl who said "nah" for "bus" and "dada" for "iPad?"

I read something once that said,

The days are long but the years are short.

Yes.  Yes.  Perhaps this is true.  At some point I stopped praying my nightly prayer that she would overcome apraxia.  When did that happen??

I'm always looking toward the next problem.  The next goal.  She has an expressive language disorder now, and the future for a reading disability is still unknown.

Maybe I need to stop for a minute.  Smell the roses Laura.  There was a time you yearned to hear that sweet voice.  That very voice today that told you, "I like you mama.  I like you.  I like daddy and I like Jace.  You're my family."

What I would have traded or given to her those words two years ago.

So yes, I'm going to pause.  I'm going to freeze time.  I'm going to think, if only for a moment, how sweet it is to hear my daughter's voice.  A voice that is her own and able to express her own thoughts.

I'm going to reflect on the fact, that in just two short years, I met the head of CASANA and went on to now have advanced training and expertise in CAS.  I literally have national apraxia experts a keystroke away via email.

Say what?  How did that happen?  How did any of this happen?

I just asked to join the facebook group for resolved apraxia but with new issues.  Yes.  That's us.  We now fit into that category. My daughter talks so much I now know she needs help with expressive language.  How amazing is that?

Even though I was late to the game in my opinion because I so wanted to believe Ashlynn was just a late talker, none of this would have been possible without early intervention.....wait...let me clarify...appropriate early intervention.

For reasons I will probably address later, I'm so, so, so grateful that Ashlynn's initial evaluating SLP (in the schools) told me it was CAS.  I knew then I had to get her private services.  I knew then I had to research this disorder.  I knew then our life would never be the same.

I'd seen CAS before.  I'm an elementary SLP, and in my 10 years of experience, two kids walked through my door in Kindergarten nonverbal.

That would have been Ashlynn had not appropriate therapy been initiated.  That meant that as an SLP, even I had to pay out of pocket.  $365 - $425 a month.  Yes.  Ouch.  Therapy is expensive, but it's worth it.  I just had a baby in that time too and was on maternity leave.  We didn't have any extra money.  You make sacrifices.  It's necessary.

I knew I didn't want Ashlynn walking into a Kindergarten classroom nonverbal, so my husband and bit the bullet and went broke funding her therapy.

It doesn't matter now.  It was all worth it.  I'm so proud of her.

"Oh my goodness!!" Ashlynn turns 5!

The day started long before the AM. Preparations were in place to decorate the house after Ashlynn went to bed.

This year was different though.  When I left to leave while Cody was putting her to bed, she asked me where I was going.

"Mama?  Where you going?"

Though I tried my best to cover, she asked,

"You going for my birthday?"

Freeze time.

My daughter has ALWAYS been astute and observant, but we usually could play it off and nothing more was said.

SAID.

That's the thing.  Nothing more was said, but Ashlynn has been watching all these years.  I think, wait, I KNOW she knew what was going on.

We celebrated her birthday this morning.  My son has been getting up at 3 AM every morning for the past two weeks, so I was sleeping in a chair in his room when I heard noise outside.  I walked out and saw Ashlynn gasping for breath.  No, she wasn't in trouble, she saw the balloons in the hallway!

She's seen these before, but today, she could EXPRESS that she really SAW them.  I had my phone on me and starting rolling the film.

Me: Ashlynn, what do you see?

Ashlynn: Oh...my....GOODness. (dancing through balloons looking at her decorations)

Ashynn: Whose presents are these?

Me: Those are YOUR presents!!

Ashlynn: Who give them to me?

Me: Mommy and Daddy!

Ashlynn: Yeah?  Look!  It's my jerjay Jace (dang assimilation...if you're an SLP, you would find this fascinating, especially since she can say "birthday"

Jace: It's your birthday today?

Ashlynn; Yes, it is!

Me: How old are you Ashlynn?

Ashlynn showing ten fingers: This many!!!

Me: Say, "I'm five!"

Ashlynn in excited fashion: "I'm five!!!

A little later on,

Ashlynn: Mama, where's my cake?

The last two years I made her a cake, but this year I decided to buy her a pretty Minnie ice cream cake that we hadn't picked up yet.  I was surprised she asked where it was.

Take that apraxia!

As the morning rolled on, I was folding clothes when my husband came into the room, eyes red. Emotional. But before I explain why, it's important to know the back story.

A couple weeks ago we were discussing what to get Ashlynn for her birthday.  My husband always has it in his head to get our kids a BIG gift.  He remembers the BIG gifts from his childhood...and some he even remembers what age he was when he received them.

I don't remember my big gifts.  I remember gifts, usually practical.  I love gifts, but for example, on my list for Ashlynn's gifts I had: long sleeve shirts, winter coat, robe, socks....(follow Cody's "really?!?" face).

Ashlynn just isn't into BIG gifts.  For some reason, she loves cards.  Any cards.  Trading cards, flash cards, alphabet cards, playing cards....cards.

I told Cody, if he wanted to get her a BIG gift, he should get her cards.  Buy her a binder she could decorate and put in pocket protectors.  He did...begrudgingly.  But it's true. It's what she wants.  We took her to the toy store THREE times, and she just wasn't crazy about anything.

Okay, so back to his red eyed confession.

Cody: Ashlynn just said "thank you daddy" unprompted.

Me: Really?  For what?

Cody: Buying her cards. She's never said thank you unprompted before.

Take that apraxia!!

As the guests arrived, her Grandma and  Grandpa  were two of the first people in the door.  She excitedly ushered her grandpa to her swing where she got him to push her.  I remember a time my dad came to visit and she wasn't really talking.  She said 'hi' but that was about it.  He left that day and told my mom he wasn't sure Ashlynn knew he was.  You can read about that story here.

The thing is, Ashlynn always knew who he was.  She knew he's the guy who plays ball and boats with her. She knew, but because she couldn't say, he left feeling the way he did.

All those are distant memories now.  She asked him "you push me on the swing?"  and they were gone.

As she was opening gifts, she was telling everyone "thank you" in a big loud voice.  She opened up a box that had a hoodie in it that she saw in the store shopping with me and told me it was pretty.  This was her face opening it up.  I think she liked it ;)

Another shirt she opened had the word Princess written on it.  I asked her who calls her princess.  As she looked up and scanned the crowd, her eyes stopped on her other grandpa that was there. She smiled and pointed at him, saying his name.  He later reported what a cool moment that was.  Verbal confirmation that Ashlynn has always known all along just what has been going on.

This year, singing Happy Birthday and blowing out candles all came easy.  That milestone was met last year.  

The best came at bedtime.  I read her a bedtime story, prayed, and then kissed her goodnight.  She was holding the card book Cody gave her.  She told me, "Mommy!  These are my decorations."  (She was pointing out her room decorations that have been on her wall since basically she was born).  Yes, honey, those are you room decorations. "Yep, just like my decorations for my birthday."  

She is starting to retain, recall, and generalize higher vocabulary.  I smiled.  Then she pointed to her card book.  

Ashlynn: Daddy gave this to me

Me: Yes, he did

Ashlynn: That was nice of him.  You get him so I say thank you?

Me: You bet Ashlynn.

And that's how we are kicking apraxia's butt!

Happy 5th Birthday Ashlynn!  May you continue to find your voice and voice your thoughts, hopes, and dreams.

Love,

Mommy

Kids say the darndest things....unless of course they don't because they have apraxia.

What was it that Bill Cosby always said?  Kids say the darndest things or something like that.  Unless of course, you know, they don't because they have apraxia of speech and can't even say the most basic things.  Or this that I just ran across:

Unless of course, they don't because they have Apraxia 

When Ashlynn was born, I wondered what her personality would be, the funny things she would do and say.  I just expected it to happen.  She would be so witty.  She has two smart parents, and one in particular who is quite funny (I won't name names but it's not the SLP).

As time marched on, I did see her personality, and she did do funny things, but it was all so limited. It's pretty hard to say or do basic things, much less funny things when you have motor planning issues affect your entire body.

Seeing other kids her age or younger on social media or worse in person, usually broke my heart.  It got to the point I didn't want to take her around other kids her age and I had to hide friends on social media because I couldn't bear another kids say the darndest things" moment, or really any moment that a typical developing child would have:

Scenario:
My crazy kid is doing back flips off our couch
What I saw:
Ashlynn can't even jump yet

Scenario:
Look at our precious baby wearing her mom's high heels.  We're in trouble!
What I saw:
My precious baby still falls wearing her own sturdy tennis shoes

Scenario:
My son just imagined this carrot looked like an alien
What I saw:
Can my daughter even say carrot, and does she even know what an alien is?

Scenario:
Look at our big boy riding his two wheeler!
What I saw:
My big girl still can't pedal a big wheel.

Scenario:
Little girl just said she wants to be a princess for Halloween.  She sure is daddy's little princess!
What I saw:
My little princess has yet to say her name.

The list goes on. Not that I wasn't proud of all of these other kids, I was.  I was also happy for the parents, and maybe a little jealous.  How easy everything came.  All these cute little milestones taken for granted.

Worse yet, the posts about their child's annoying incessant talking.  If only there was some peace and quiet.

Really?

The quiet is our own little hell.  You can't even to begin to understand how painful that is to hear as a mother who has a nonverbal child, when every quiet moment is spent praying that they will talk.

That's why my last post was so special I guess about Ashlynn confusing "coworkers" with "construction workers."  She always comes along, just in her own time,

and your kids will too.

Working our way out of the apraxia tunnel

Ashlynn has been saying things lately that are really showing higher level thinking. You'd think this would be glaringly apparent to me, but it really IS crazy how much language gives us an idea of what is going on in their brain.

She's been VERY interested in her schedule, and where she is going the next day.  I still haven't made our visual schedule, but it's on my to do list.  She usually asks me though while she's laying in bed to go to sleep,

"Mama, what are we doing today?"

"you mean tomorrow?

"yes"

"Tell me that.  What are we doing tomorrow?"

"What are we doing, tomahyo?"

And then we talk about it.  She loves it when her grandma drops her off at school and I get to take her to her class.  This happens on Tuesday and Wednesdays.  She used to just keep asking 

"you takin me to school?"

I would reply, "Grandma will take you to school and I'll take you to class."

I've been telling her that since she started school.  This week she finally said, 

"What are we doing today mama?"

"you mean tomorrow?"

"yes"

"Say that, What are we doing tomorrow?"

Instead of repeating it back to me, she asked, "Grandma take me to school and you take me to class?"  

This may seem small, but I was sooo proud!

She also asks me who I work with almost everyday and I usually tell her my coworkers or colleagues.

Well the other night, she said, "who you go to work with, mama?  Construction workers?" 

LOL  

I love it.  It makes my heart smile, and in those moments, I know everything is going to be okay.

My last update has to do with school.  This is her third year of preschool.

The first year she came home singing (with 1-2 sounds) the melody to the baby bumblebee song.  By the end of that year, she was also telling me who her friends were in school.

The second year, she would tell me who she played with for that day, but that was usually the extent of her school reporting.

This year, her third year, she's identifying the letters of her name all over the place.  She also told me the other day when we were talking about arctic animals and that polar bears live there, 

"I live in Colorado."  

Me: "Did you just say you live in Colorado?"

Ashlynn: "Yes, my teacher tell me that."  

I sat their in awe.  This is the first time she's ever told me something she's learned at the school.  Heck, this was the first time she said something that she hadn't learned from me or that I hadn't heard her say before. 

I see the light at the end of this tunnel that is apraxia.  To be honest, I've seen it for some time now, but I feel we're getting closer to making it completely out.

Last year of Pre-K

Today was Ashlynn's official first day to her last year of preschool.  It was also two years ago today I heard the words, "Laura, this is apraxia."                                                                                                   I'll never forget that.  It was like hearing something for the first time you don't want to believe, but that you instantly know to be true.                                                                                                                   Apraxia.  Apraxia.  No.  Not my baby.  Why apraxia? That one word brought forth all sorts of things in my brain.  Speech will be a struggle.  Learning to talk will be a struggle.  She will have to have a lot of therapy and she will have to work for every sound, every word, and then every sentence.                                                                                    I texted a colleague.                                                                                                                          "She has apraxia and I'm devastated."                                                                                                     I cried. My little social butterfly whose favorite word was "HI" would have to fight to be able to talk.  She would have to earn her right to do the ONE thing that brought her joy: To be social and speak to others.

It was a hard pill to swallow.  I remember I put her in her car seat, and as I leaned over to hug her I cried.  She smiled and asked me, "hi?"  I cried some more.        

Her first week of school though was nothing short of amazing.  She qualified for free preschool in a special needs classroom due to her needs.  You can read about that here. First week of Pre-K

Her second year of preschool brought even more exciting developments.

Encouraged!

Her first favorite

To Say your Name

Only positives

Today she was sooo excited for school.  When she came home, she wasn't able to really tell me WHAT she did, but it typical Ashlynn style, she could tell me WHO she played. with.  There was Mia and Carly, her teachers Kubra and Donna.  I'm excited, hopeful, and maybe a little nervous.  This IS her year to catch up. I'm doing everything I can as her mom.  She's in private speech and OT, she's still getting private swim lessons since swimming has been amazing for helping with her bilateral coordination, we're doing sensory and OT/PT activities at home, and of course the speech she always gets from me.  

We sure have come along way from that day in the car that I cried, and from that text message that said I was devastated.  Our ENTIRE family is different now, and we're all better for it. 

So bring it on school year 2014/2015!  We're going to give it all we got!

"I love you mommy!"

These words are cherished by any parent.  These words are eagerly anticipated.  When you have a child with a speech delay, the eager anticipation eventually gives way to desperation, and maybe, (though hopefully not) apathy.

Ashlynn has been able to say "I love you" for awhile now.  Once she really got good at imitating, we had her imitate it every time we told her goodnight and tucked her into bed.  Now that she's older, she automatically says it after we say it in any situation, and we are happy.  We are very happy.

Today though, I heard these words spontaneously.  She said them in a moment of pure joy and blessed me with them.

First, a little back story.  I've been home for a month now on summer break with my kids. It's awesome and exhausting.

I am admittedly not an artistic person, and I really could live without the messes that art creates.  I'm a writer.  Writing is so clean.  A pen and paper is all you need to create beauty out of words, which then are easily put away until later.

Kids are not writers.  They do not yet appreciate the beauty within words, but they love a good mess.  A good mess and me are not on good terms.  However, kids and neatness are not on good terms either....so what is a mom to do?

Ashlynn begs to do messy things.  Play with play-doh and proceed to get it everywhere including in her hair, in her shoe, and ground into the carpet even though she's playing on the tile in the kitchen.

Let it go mama.

Play with water in the sink.  Except the water inevitably ends up in a huge puddle all over the (small) counter, the floor, her shirt, her pants, and possibly needing a change of underwear.

Let it go mama

Play with the dirt outside.  However, the dirt somehow happens to turn into mud that gets under her fingernails, in her shoes, on her shirt, and again ground into the carpet that is INSIDE my house even though she was playing outside.

Let it go mama.

And I really have been trying.  Messes make her happy.  The tactile input is helpful for her SPD (sensory processing disorder).  I've really, really been trying to just accept the mess.

Today I was at Target getting some odds and ends.  I'm not an impulse shopper.  I only buy necessities and if I do I usually have a coupon or it was on sale.  I saw the dollar bins and I decided to take a peek.  I'm also not a window shopper, so this is unusual as well, but you know, I've become more flexible this summer and I don't know what has gotten into me.

I ran across foam stickers and my memory instantly recalled paper after paper that came home in Ashlynn's backpack this year full of random papers that had some scribbles and foam stickers on them.  I would never buy foam stickers.  What a waste.  They serve no purpose.  You put them on paper and then throw the paper away.  What's the point?  Something in me though remembered all of those papers and thought Ashlynn really likes these things.  I stood there awhile debating.  They were only a dollar, but it seemed like such a waste!!  But I think, Ashlynn really likes creating with them and (and this is my internal argument that allowed me to buy them) they are good for bilateral hand coordination since you need both hands and fine motor control to get the paper off the back.

I bought them.  Good.  Ashlynn will practice fine motor skills.  I'm a good mama.

I brought them home and she was happy.  Not overly happy, but happy.  She was busily creating when she randomly walked over to me and tapped me on the leg.

"Mama, Mama, MAMA!!"

"What honey?"

"I love you!!"

I'm stunned.  What on Earth prompted this?  And that's when I looked a few feet beyond her to the messy table, backs of foam stickers littering my carpet, and paper after paper full of foam stickers.

I gave her the biggest hug.  I might have cried.

As it turns out, a good mess and me have gotten closer.

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.

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.

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.

The importance of touch

"Touching helps us build relationships with one another."
This is a simple but profound quote from an article I read on the power of touch: Importance through touch.  It went on to say that babies first communicate through touch and crying, and that their needs are met mainly through touch. It got me thinking. Since Ashlynn took longer to talk, she could only continue to communicate with us through touch and crying.  She has pretty good functional communication now, but when she is tired she still resorts to crying or a tantrum to express her frustration. 

Other parents who have kids with apraxia frequently report their kiddos are the sweetest and most loving children.  Generous with their hugs and kisses, they are also sensitive and highly attuned to feelings and emotions.  This describes Ashlynn as well, now.

As a baby, she wasn't as cuddly.  She always wanted down, and would only cuddle with me long enough to breastfeed or fall asleep.  However, she did always need to be touching hands.  Daddy's hands, Grandma's hands, my hands.  When she started preschool this year, the teacher reported she was very loving, which was great; but they were having to teach her to ask for hugs first because not every child shared her enthusiasm for hugs (except the little boy with Down Syndrome.  It's a hug fest when those two get together!)  Holding hands, however,  she can usually get a way with!

Ashlynn holds everyone's hand.  If they hold it back, she immediately declares them a friend. If they resist, she moves onto the next kid.  When she plays with her cousins her age, she also wants to hold their hand.  I have so many pictures of her hand in hand with her cousins and various children.  Not to mention her little brother.  They hold hands in the car on the way to Grandma's house for daycare. 

"She just needs more repetition than most."

Today was Ashlynn's Spring parent/teacher conference.  I don't know what I expect really.  As much as most of the time is spent focusing on her strengths, all that hits me like a ton of bricks is what she ISN'T yet doing. My husband thought I was crazy.  He couldn't come to the meeting today, but read the paper tonight at dinner and told me he felt it was predominantly positive.  Look at all the things she's doing that she wasn't doing last year at this time.

True.

I guess I just hate listening to all the positives while holding my breath and waiting to hear the "but....." 

It sucks.  I just leave there feeling desperate, sad, and worried, no matter how many positives they managed to come up with.

Hearing all the buzz words I've used in meetings before, "needs more repetition than other children" "learns differently" "has a great attitude which is a huge asset"

I guess I should focus on the positive though.  Her strength was in pro-social behavior and she even gets in trouble now for talking too much!  Um, what?  Talking too much??  She didn't even talk to her peers last year in preschool so that is AWESOME.   Her language sample during sensory table was as follows:

I help you?
What doing?
I'm making a pizza to baby.
I like pink.
You have purple.
I sit here?
I play with Austin?
Blue goes right there, see?

As an SLP, this is awesome.  She's four years old and is using primarily 3-4 word sentences.  Still a little behind, but her sentence length is only a little under than what is expected for her age.  This is exciting.  Also, she was SO clueless about her colors last year.  It sounds like she's finally starting to retain them.

The report said "she is understood by most familiar people and strangers can usually understand her if she speaks slowly."  That is also great news!  I need to revel in all of this progress.  Can't I just remember when  I was freaked out she wasn't talking to anyone and all I wished for was that she would talk?  I know....I NEED to....it's just...then there is all the academic things she needs to know now.
She still needs more practice recognizing and naming the letters in her name. She can count to ten and count up to five objects accurately using 1:1 correspondence.

Okay, yay, that's awesome.....except I know by the end of preschool they need to know ALL their letter names and letter sounds, count to 20, and be able to write their name by the time they enter Kindergarten.  The teacher tried to encourage me by saying, "well, she does have one more year in preschool."  and then ended, "but summer is a critical time because a lot of kids do show some regression." 

Yes, yes that's true.  I hope next March at her Spring parent/teacher conference we will be on target.  In the meantime, I am officially off my sabbatical of only being Ashlynn's mom.  She needs me more than that.  I went out and bought a bunch of alphabet cards, foam letter puzzles, and a dry erase board.  I sorted the letters of her name into a bag, and we're going to practice putting them in order and naming them every day.  We're also going to go through the foam letters and name the letter and the sound daily.

I downloaded a kid weekly planner so that Ashlynn can learn the days of the week and each day we can talk about what she is going to do, and then at the end of the day we can talk about what she did. 

I printed out three picture sequence cards so she can practice putting them in order as well to encourage pre-reading and narrative abilities there too. 

I've been depressed today just thinking about all of our hard work ahead, but tonight when I was working with Ashlynn, she's not depressed at all.  She was thrilled to have 1:1 attention from her mama and just attacked it all with her positive attitude. 

So here's to a lot of work, but most importantly, a positive attitude to go with it. 

If we don't say we're scared, does it mean we don't have fears?

Ashlynn almost drowned...twice. Okay, maybe I'm being dramatic, but that's how a mother feels when a lifeguard has to jump in and save your child.  The first was during her first ever swim lesson and the second was during a random winter session her Grandpa took her to.  Both times she just walked off the toddler platform as though she could swim, and both times a lifeguard had to dive in a save her.  The first time, she seemed to have forgotten the incident just as quickly as it had happened; but the second left fear, only apparent from her refusal to get in or go near the water two months later.

She never told us she was scared, though we asked and she would nod her head yes. In fact, come to think of it, my now four year old has never told me she was scared.

I remember parts of being four.  I was afraid of everything.  Currently, not much has changed. I've always been afraid of things. I hated the typical things like monsters and ghosts, but clowns and mascots always freaked me out too.  It struck me that though I can tell Ashlynn is afraid now of swimming, she has never told me and that makes me sad.

We always say we want to know their hopes and dreams, but what about their fears? Fear is a human condition. Facing fears is one thing, but kids need and look to parents for reassurance.  How do you reassure your child though, when you don't know what they need reassuring on?

The family took an impromptu, much needed weekend getaway.  After taking Ashlynn to her swim lessons and watching her be afraid to even step in the water, my husband was excited to go to a hotel and practice her swimming.  Ashlynn was doing SO good with swimming last summer, even blowing bubbles and getting her face wet.

Ashlynn acted excited to go swimming.  Kept talking about the pool and asking if we could go swimming.  However, once there, she wouldn't come in despite my husband's gentle prodding with arms outstretched.  If he went to grab her, she'd pull back and start crying.  I got in the pool and tried.  I saw the fear in her eyes.  "Are you scared Ashlynn?"  I asked, and she would cry and say, "yes".  I'd tell her that I'd catch her, but she'd still cry and shake her head no.  I finally said, "Baby, I won't let you fall, ok?"  Immediately I saw the fear leave her eyes and she verified, "yes?"  Realizing her fear was that she would fall, I said again and more confidently, "Ashlynn, I will NEVER let you fall" and then I said a quick prayer as fear gripped ME, that in every situation the Lord would guide my hands so that I would indeed never let her fall.

She extended her arms and swung them around my neck and we entered the pool together. I kept reassuring her that daddy wouldn't let her fall either and she went on to jump into his arms, do her back floats, and blow her bubbles.

One day I know she will express her fears, and as her mother, I will always be here to reassure her, protect her, and just love her.  For now though, I'll continue to do what all mothers who have a child with apraxia do...anticipate their needs, give our best guess at their desires, and express their fears for them until they have a voice to do it all on their own.   

Her little heart of gold this Valentine's Day

Went to Ashlynn's Valentine Party today, and was so encouraged!  The SLP informed me she has moved out of the cube chair and is now sitting up front by the teacher with reminders to sit criss cross applesauce.  Watching her with the other kids warmed my heart, although I could see how her core seemed much weaker than her peers.  Her back was slumped and she kept having to lean back on her hands for support.  Her focus was better though, not great, but better!  I have to hold onto this because other reports were not so positive. If you are interested, you can read about one of my struggles here: She really does have special needs

Other great news: The SPED teacher informed me she is doing fairly well counting with 1:1 correspondence, and during an activity where the kids had to say a sentence, Ashlynn stood up proudly and said her sentence fairly clearly after the teacher modeled.  The teacher then sang a song twice.  Ashlynn was engaged and smiling.  When the song ended, Ashlynn said loudly, "DO AGAIN!"  The teacher moved on anyway, but it made me smile.  She really seemed like one of the kids today!

I did start to notice when she lost focus.  She is distracted by people.  She wants to know what's going on.  She's making sure everyone is ok.  At one point, a peer was crying and she could not take her eyes off her.  During dancing, that same friend wasn't dancing and Ashlynn came up to her side and danced beside her.  She would hold her hand out as if to say, "I see you.  You matter.  I don't want you to be sad."  During the dancing activity, Ashlynn moved from peer to peer.  Laughing with them, engaging them with her smile, not her words.  She was always usually pretty successful.  A person laughing genuinely and having fun doesn't leave many sour faces  in their wake.

Toward the end of the dance, she ended up next to her BFF.  I know it's her BFF because she talks about this girl all the time, and the girl and her hug when I pick her up from school.  Today though, I got to glimpse into their world.  Ashlynn grabbed her hands so the girl's attention was on her, and just made silly faces and laughed.  The girl couldn't help but laugh along with her proclaiming, "oh Ashlynn, you are so silly!"  They then would jump and dance together!  I can't tell you how happy I am that she has a friend.

It's hard to imagine that just a year ago, she wasn't even talking to her peers in class.  I just can't believe the difference a year makes.  I wish I could go back and tell that mother that everything really WAS going to be OK.  Next year, she would not only talk to kids, but she would have a best friend.  Next year, she would be participating in class, repeating modeled SENTENCES.  However, the sweetest part is that she is still the same sweet Ashlynn with a heart of gold; and I wish I could tell my old self a year ago.

Just love

It's really not ok to develop a severe disliking for a child.  They are, after all, just a child.  However, there is a little girl at Ashlynn's school who is very hard to like.  She's rude, rolls her eyes, and bosses Ashlynn around.  She has mocked my son (who's a baby) when he was talking, refused to say "hello" to Ashlynn even as Ashlynn greets her with a cheerful "hello," and demanded Ashlynn stop hugging a little boy in her class among other things.  All of this has happened in the first five minutes before school started, so I can't help what wonder how this girl is to Ashlynn the rest of the day; and my anger stemming from somewhere in the depths of me, begins to rise giving way to some not so nice feelings toward this little girl!

The other day for the class holiday party, I couldn't go so it was just my husband and Ashlynn.  Feeling like I was missing out, I text messaged him begging for a picture.  He took the most adorable picture of Ashlynn.  I smiled as I saw it, and then I saw she was sitting next to......that girl.  Why?  "Why is she sitting next to this little girl who has an attitude problem and is ALWAYS rude to her?" I huffed in my mind.

Well today, as I dropped her off for school, we were once again graced by the little girl's rudeness.  She refused to say hello, and only spoke to tell Ashlynn to get away from the door, declaring SHE was first.  Ashlynn backed away and the girl with an air of haughtiness gestured, "YOU can get behind me."

Okay really??  She's four!  What the heck!  Ashlynn sweetly nodded her head and answered "yes?"  Of course since she was in fact there first, there wasn't much I could say, as the rules of preschool are very black and white.  However, the rules of preschool don't dictate my feelings, which were only growing into more of a cancer now.

As I left the school, I called my mom asking her how she dealt with these problems?  My kid's only four and I'm already mad at her "friends" and developing hate for a mere child.  I need to get it together.  My mom had great advice, including "let go and let God."  She also reminded me that in life we all have to deal with these people at different times, and unfortunately, our kids have to learn that too even though it may hurt us.  She made me feel better, and I thought I had put it to rest.

I started thinking though. Ashlynn has only love in her heart.  She's the target, not me; and yet she still tells her hello everyday with a big smile.  She still hugs kids when they want hugs (or maybe even if they don't), and she still sits with her at a party, possibly because no one else will.  I know it wasn't because she doesn't have any friends, because all the teachers assure me frequently how well liked Ashlynn is and how she is friends with everyone.  I realized I needed to take a tip from Ashlynn.  There is no room for hatred in our heart.  Love is not only easier, but it's kinder and makes us feel better.  This little girl is unhappy, but Ashlynn always has a smile.  She has a smile because she dismisses the eye rolling, the lack of manners or social etiquette, and just wants to love.  If Ashlynn can love so simply, than so can I.

She's a real class act that Ashlynn.

Christmas 2013 updates

It's Christmas 2013, and my daughter is 4years, 2 months.  It was a magical time this year with her talking more and being able to jump.  So much is conveyed through jumping and talking.  We did the Elf on the Shelf this year, and each day she would get out of bed and ask, "where's elf?"  When she found him, she would point (something that took until she was more than two to do) and jump (another motor milestone that took until 3 to do).  Add the speech, "There he is!!" and her excitement was communicated fully for the first time this Christmas!  As a parent, that is literally all you want to see.  You want to see the excitement in your child, and then their wonder as they play with their new presents. 

Apraxia affects ALL of that.  If you're not a parent of a child who has it, you just cannot understand.  She smiles in the pictures (though it has to be genuine because she still has difficulty smiling on command), and she is holding her toys (though a picture doesn't show how she can't operate AND steer her car, or pedal her big wheel, or put the baby clothes on her dolls), and she looks completely normal; but if you are there with her, you not only see her struggles, but as a parent, you FEEL them as well.

This Christmas was a mix of feelings.  At seeing her jump and point, we FEEL her excitement.  At forgetting how to pedal and not being able to ride the big wheel, we FEEL her frustration and disappointment.  At opening baby clothes that she actually asked Santa for ("I want clothes....for my baby...baby clothes") we FEEL her success at telling Santa for the FIRST time what she wanted and not what someone else had suggested, and when she opened the clothes, we FELT her elation.  As she tried to put it on and finally gave up and had to ask us to "play babies with me" we FELT her resignation to her apraxia. 

There are not words to convey the roller coaster that is apraxia.  There are no words to convey how you literally feel everything your child feels; which is why every parent says they would wish hard things on them if only they're child didn't have to experience it. 

However, this is not a story of sadness or defeat.  This is an update of triumphs and successes, and how this year is better than the last.  In years to come, these years will be faded memories as she will have struggled and defeated all of her difficulties. We will literally be the proudest parents when she achieves every success, and we will love her through them all.

Don't dare to compare

Ashlynn was my first child.  In a way, it was fortunate I had nothing to compare her to, and in a way, it was unfortunate I had nothing to compare her to.

My son Jace is my second child and is currently 16 months.  He not only walks...he RUNS.  He not only babbles and says words, he puts two and three words together!!  Every time he hits a milestone, my heart bursts with pride; and every time he hits a milestone a tinge of sadness seeps in when I think of just how long it took Ashlynn to do anything he does. 

I hate that.  I hate comparing.  I wish that when someone told me how they know they heard Jace say "what's over there" in his baby jargon that they could understand, I could smile longer than a fleeting moment until I wondered when Ashlynn finally put those three words together.  I wish when someone told me how they swear they heard him singing the ABC's, I could beam with pride longer than a second before my mind swirled to countless days singing ABC's with Ashlynn on the iPad, the fridge toy, the vacuum toy, in the car, while reading a book and still not hearing her be able to say "A."  I wish that when he drank out of a real cup, a straw, a water bottle and looked at me with pride, I could be there only in that moment with him, and not start to think about how Ashlynn still chokes drinking her sippy cup.

These pictures show Jace age 16 months, and Ashlynn age 18 months.  In her picture you can see her open mouth posture (low tone) and also see the flexion in her feet.  She was just barely walking and walked on her toes.  I stretched out her calves everyday in the bathtub. 

It makes me think about a quote from Temple Grandin, "There needs to be a lot more emphasis on what a kid can do, instead of what he cannot do." 

So let me say, even though Ashlynn didn't talk, or sing her ABC's, her sweet smile and bright eyes lit up a room.  Her soft and gentle touch melted hearts, and her giggle was and is still contagious.  She may not have drank from a real cup or a straw, but she would hold out a goldfish to a friend to "share" and she would pat the seat next to her forcing whomever to sit down and enjoy her company. She may not have ran when we went outside, but she would lay down next to me staring at the clouds and sharing a perfect moment in the summer sun.  She may not have told me when she was hurt, but she was the first to look concerned if she thought her dad or I was. 

Yes, there does need to be a lot more emphasis on what a child CAN do, and from now on, I hope to not compare, but to focus on what each child does well!  I'm so proud of them BOTH and I want to be proud of each of them and revel in those moments.

 

Happy Birthday Song! Ashlynn turns four

Ashlynn turned four this past weekend and my husband and I were just beaming with pride.  Last year, she couldn't blow out her candles, sing the Happy Birthday Song, much less even say Happy Birthday.

When she woke up in the morning, balloons were waiting for her in our hallway.  Before she hit the bathroom she excitedly said "BAYOONS!!"

As she stepped in the kitchen, we had a Minnie Mouse Birthday banner, tablecloth, and big balloon decorating the kitchen.  She could not stop talking!  "Minnie right there, and Minnie right there, and Ashlynn"s Happy Birthday!"  When my husband came out in the kitchen she called "Look daddy!  Minnie! Ashlynn's Happy Birthday!"  When he asked her how old she was, she proudly held up four fingers and pronounced "fowa."  She just recently has been generalizing the 'f' and she said it correctly without any cues. Also, last year, the motor plan to hold up the right amount of fingers just wasn't there; but this year, with a little planning, she pulled in her thumb and held up all four fingers.  My husband and I exchanged looks of pride knowing what the other was thinking, without having to speak a word.

When we got in the car to go the Pumpkin Patch, all by herself we heard a happy little voice coming from the backseat, "Happy Birthday to you, Happy Birthday to you, Happy Birthday to ASH - IN, Happy Birthday to you!"  This time when we exchanged looks, we both had a little tear in our eye.

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."

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."