"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

You play dirt with me?

We took our annual Fourth of July camping trip to Glendo State Reservoir in Wyoming.   It's a family tradition, so I decided to document her progress each year.  Last year's experience can be found here: Glendo 2013
This was only a few short days after our near drowning incident at her pool during swimming lessons.

Glendo is a HUGE reservoir, and a lot of our time involves the beach.  I was worried about Ashlynn's safety, and also if she would be too scared to go in the water.  The first day she kept her distance from the shoreline; however, the second day she walked to the shoreline and was watching her dad who was floating in the water maybe 10 feet away. Sensing she wanted to come in, he held out his arms.  I didn't see him at first and my sister motioned to me that it looked like she was going to go in.  I went running to her, but stopped just short behind her.

I saw my husband with arms outstretched encouraging her to come to him, and then I saw her little shoulders rise up big as she took a deep breath, and she marched in the water.  She marched through the waves, keeping her balance, until she fell into his arms with a big smile upon her face.  He hoisted her up into a floaty with him to enjoy floating in the water under the warm sunshine.

I looked on in awe.  She's so brave.  Her character is quite astounding to me, and I'm her mother.  She faces challenges, fears, and obstacles head on.  She never gives up. She is determined and resilient.

She also of course, rode our jet ski.  I wrote last year that she asked, "Ashlylnn play boats with daddy?" and this year, she announced proudly after riding, "I ride the je-si huh!"


One of her favorite requests this year was, "you play dirt with me?"  imploring anyone who would listen to play in the sand with her.  No one had the heart to say no, so she made quite a few friends and suckered in quite a few family members!

When it was time for fireworks, Ashlynn has historically stayed in the car.  However, this year, she again put on a brave face and ended up enjoying the show!  At times she would say, "that was too close!!!" but she never went back in the truck.

I like documenting some of her milestones on the Fourth of July, Independence Day.  It's so fitting since each year she becomes more and more independent.

Ashlynn summer speech therapy 3.9 years

Ashlynn received two grants to help with her speech and occupational therapy over the summer!  The United Health Care Foundation and the Lindsay Foundation made it possible!  I am so grateful.  Ashlynn will be back to getting intensive 1:1 speech and OT services.  

As far as speech goes, Ashlynn communicates her wants and needs.  She has basic conversational skills and really does try to tell us what happened in her day.  Sometimes when she's talking, I see my husband look at her with pride in his eye and I know what he's thinking.   Even though we don't always understand what she is saying, it is amazing to listen to her talk and try to tell us things.  She was silent for so long.  

I love her speech therapist.  She was actually my mentor and is now one of my good friends.  She's fun, but I also know she'll push her.  However, I also know she'll find the deficits and the continued deficits are hard to be faced with and make me sad.  I want to write it down though, because if I know anything about Ashlynn, I know she'll overcome it.

- She has significant word finding issues.  Sometimes, she needs so much wait time that eventually she even forgets what she wanted to say and moves onto something else.  

- Her attention continues to negatively impact her progress

- When something is hard, she changes the subject and tries to talk about something else

- Auditory processing skills such as auditory discrimination between minimal pairs (sleep, seep) appear to be impacted.  

- Grammar, including marking varying tenses and using s/v agreement along with pronoun usage are faulty

- Syntax is jumbled, particularly for question forms

- Still has a tendency to assimilate sounds she knows how to say (goggy/doggy), and continues to be inconsistent with her production of consonants in her repertoire (koys/toys). 

- Needs continued work with /l/ and /r/

- Continues to breakdown with novel multi-syllabic words

- Receptive language skills continue to need monitoring

That's a long list, but I have to remind myself it used to be longer.  She'll get there.  I know it.  There was a time I worried if she would ever make friends because she couldn't talk to them.  Here she is at the splash park talking to perfect strangers and making friends.  One step at a time.

Summer speech with a little sidewalk chalk

Looking for a fun way to incorporate some speech practice into your summer schedule?  All you need is some sidewalk chalk and your kid!

I picked some sound combos Ashlynn is currently working on in speech and drew them in the boxes of a hopscotch grid.  We then would throw a rock and whatever the rock landed on, we would hop to that picture and say the picture.  She was so busy having fun, she didn't really realize I was working on her /l/, /l/ blends, and /s/ blends!   Not sure if you can see here, but we have a firefly, spider, butterfly, ladybug, dragonfly, bumblebee, roly poly, star, and clouds in the sky.  

As a bonus, since Ashlynn has global apraxia, the added jumping and keeping feet in the boxes would make any PT or OT happy too!

Look at those good jumps!  My heart smiles at this picture because jumping did not come easy.  If you're interested, you can read about here: Jumping on the bed

Not to be outdone, her 24 month old brother was hopping right along too and practicing speech! Fun for everyone, and momma stays sane with kids entertained!

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.

Did I cause her apraxia?

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

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

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

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

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

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

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

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

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

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

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

I want to tell you we say these things not to fault you.  Parents of typically developing children didn't make their child talk.  Their child just naturally did so.  Don't listen to your family member, or well meaning friend or whomever tell you it is your fault because you never made them talk.  Children don't have to be made to talk.  I really  BELIEVE this now with my son.  I have never made him talk.  He talks so much I can't make him stop talking. In fact, the one time I did try to teach him a word I was trying to get him to say "Jake" when requesting the show "Jake and the Neverland Pirates," since Jake would be easier to say.  Well guess what?   He didn't say Jake, he said pirates instead and has continued to do so.  So there you go.  I am the same mom, the same SLP I was with him as I was with Ashlynn, and I am here to tell you I tried my DANGDEST to get her to talk.  I did everything I knew how to do as a professional.  Guess what though?  She has APRAXIA.

So for now, I've channeled all that guilt and blamed it on Apraxia.  I wish you the same!

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."

Lessons from a tricycle

We bought a tricycle for Ashlynn three months before her third birthday. My husband and I took her to Toys R Us, excited, full of hope and expectation. I had seen two-year old children on Facebook gleefully riding their trikes with big goofy smiles on their faces, and I couldn't WAIT to snap that happy gleeful face on my little girl.

Pregnant with my son, we all left the store and I had visions in my head of me walking to the park, with her riding her trike in front. I would occasionally have to call for her to stop so she wouldn't get too far ahead.............

....but it was me getting too far ahead that night. One year later, with aching backs and frazzled patience, my Ashlynn still can't ride a trike.  She has made progress though and can now not only keep her feet on the pedals, but can also keep them "straight" on the pedals where her heel isn't constantly coming into contact with one of the bars.  As for the actual alternating pushing motion, that is still to come.  

You'd think she would be frustrated, but the opposite is true.  As kids whiz by on their bikes, she happily laughs, giggles, and asks me, "See bicycle mama?"  and then with determination in her face she gets up on her tricycle again, ready to practice. Like most other motor tasks, this one too will take time.  It will be a journey to success, but success will surely be there; waiting more patiently than me.

However, I've learned success is never really about the outcome, just as riding a bike is never really about the destination.  Every bike rider will tell you the fun and the meaning are found in the journey.  The sights seen, the hills climbed, and even possibly the falls taken.  The lesson learned from the tricycle is more than just learning to ride.  It's a metaphor for life, and of one thing I"m certain.  Ashlynn will always be a success because she has already learned: the fun is in the journey.

Ashlynn play boats with daddy.

This past Fourth of July weekend we went on our annual trip to Glendo State Park in Wyoming. My husband and I have been going since before we had kids. Without getting into all the details, once you go to Glendo for the Fourth, you always go back if you can! Last year we couldn't go because I was having my son so we were very excited.

When we went to the beach, Ashlynn saw my husband pull up on the jetski. She looked at her grandpa and me and announced, "Ashlynn play boats with Daddy?" I teared up immediately. I know I sound like such a sap, but when you are the parent of someone with apraxia and they say things and put novel words together in context, it is just the best feeling! I asked her if she wanted to ride the jetski with daddy, to which she enthusiastically replied "yes." I of course then scripted the appropriate  way to ask the question and had her repeat, I want to ride the jetski with daddy.

We still have a ways to go. We've been working on her using the first person "I" since before school was out. It's just such a testament to how much repetition a child with apraxia needs, because I correct her and make her repeat her phrases and sentences using "I" every time she refers to herself as Ashlynn. We were so intent on getting her to learn her name that now it's hard to get her to use something else.  However, I do know that she will get that too, and that's a comforting feeling.

Two years ago we took her to Glendo when she was 21 months old. At that time she had just learned to start walking really well and she only had a handful of word approximations. Unfortunately, anything that wasn't a flat surface was difficult to walk on, so we still had to help her walk everywhere. She only had a handful of word approximations, and her favorite thing to say was "a dah." and "hi."  I've learned from my parent support group that most kids with apraxia have a go to sound that they use for everything, and a dah was Ashlynn's.

Fast forward though two years (and a lot of therapy and extracurricular activities to work on motor skills) and she was running on the beach and bending down on the sand. She is still unsteady in the waves and can't be trusted around the fire pit for fear she will lose her balance and fall, but that will be a progress report for another time. For now, we celebrate that in two short years, a dah was replaced with a complex sentence asking to play boats with daddy, and now she fearlessly got up on the jetski.

I look forward to coming years when she will be navigating around the campsite without fear of falling, swimming in the water, and maybe waterskiing or jetskiing on her own.  Also, I excitedly anticipate her talking our ear off around the campfire.

Switching private SLP's

So I made the decision to discontinue private services through the SLP that was seeing Ashlynn.  I am very appreciative of all that she did; however, I feel like we had hit a wall with her therapy style.  Her style was to have my 3 1/2 year old daughter sit in a chair across from her for the entire 30 minutes.  The first 15 minutes she would do Kaufman cards, and the last 15 minutes she would play with a fun toy and have my daughter request and comment on it.  However, it was very controlled and my daughter couldn't hold it and had to do it all her way.  If Ashlynn threw a temper tantrum, she would look at me and tell me that when she has kids they are going to hate her because she won't put up with that.

Ya, well, good luck lady.  Kids throw them whether you "put up with them" or not.  It's called being a toddler.

After a couple months of this, my daughter was pretty over it.  The first 15 minutes turned into more like 20-25 just trying to get her to say the cards.  Apraxia therapy can be boring, but my goodness, I needed her to get creative!  I did bring up that maybe we could put it in a more naturalistic setting, having them play etc.  In her defense, she did try; but she still had Ashlynn sitting in a chair.  If she didn't get something accomplished, she just told me to do it at home.

Well, I tried to be polite, but I informed her that as a school based SLP, I don't have the luxury of having my carryover plan include parents doing homework.  I have to get creative!  Kids need to be having fun, and besides, that's how they learn the best!

I had a great mentor whose therapy plans usually included 3-4 different activities in one thirty minute session. They were multi-sensory in nature, which are methods that involve using any sensory and motor input available to enhance verbal skills.  This usually involves some type of play activity that might have them throwing a bean bag, walking like a crab, or even using felt and velcro boards just to do something different with those same old picture cards.

David Hammer, a well known CAS expert out of Pittsburgh does this as well.  I've been to a couple of his presentations now and he shows a lot of video.  I rarely see a child required to sit in a chair across from him. He has them doing puppet shows, hitting the cards with a nerf gun after they say their sound, or tossing bean bags in and out of a huge dinosaur's mouth aiming at the artic cards.  He has them banging on drums to represent each sound or syllable etc.  This is the way to promote carryover, and I could see this SLP wasn't going to do that.  She may have known the Kaufman method, but her therapy style wasn't what I was looking for.

That's the thing.  There are always going to be reading programs, math programs, and speech programs out there, but teaching style or therapy style plays a big if not bigger part in facilitating change.

When I was an SLPA (assistant SLP), I worked under a lot of supervisors and was able to see a lot of different styles.  All therapists are qualified and trained professionals that will most likely get the job done, it's just some got the job done a lot faster.  That's the kind of SLP I strive to be, and that's who my mentor is.

Since it's summer and my mentor is off, I"m switching Ashlynn to her.  I know Ashlynn would have progressed, but I need her to progress faster, which means I need someone more multi-sensory.  This is where I have seen my mentor shine and I'm excited for Ashlynn to start with her.

She is the definition of perseverence (a poem)

You went to speak, but the words wouldn't come,

Stuck in your brain,  so easy for some.

You went to crawl with the best of intents

Yet your body didn't know what your brain meant.

You went to walk, big smiles and all

Yet every time you tried, it ended with a fall.

You went to drink from a big girl cup

You would sputter and spit till it came up.

A new car for Christmas kids want to ride

Spins in circles, hard to learn how to drive.

But

You are a living example to persevere

and with it you conquer all our fears

One day you said mommy, and I love you

One day you crawled to daddy's shoe

You don't just walk but now you run

You drink from any cup till it's done

and I know in time you will do it all

with just more patience and practice

you're going to conquer it all.

"I Will Wait" Struggles have made victory that much sweeter.

Ashlynn's progress continues to grow by leaps and bounds.  So many times I catch myself smiling and my eyes well up with tears to see her knock down all of her obstacles.

Last month she learned to jump for the first time at 3 1/2.  At the beginning of the year, it broke my heart to watch her try on a classroom trampoline.  On their turn, all the other kids exuberantly bounced away.  When it was Ashlynn's turn, all she could do was march.  Now, she is not only exuberantly bouncing, but she is catching air in my kitchen, on my patio, and even on her bed.  I was scolded for jumping on the bed, but I don't care if she busts every spring and I have to buy  her a new one.  It's worth it.  It's all worth it.  Every penny spent, every happy and sad tear shed, every minute in therapy; it's all worth it!  

She also sang to a song that she had never heard before in the car last week.  Mumford and Son's "I Will Wait" song was on the radio.  I was singing to it, and all of a sudden I heard her.  Her little voice filling the car with the chorus.  There are no words to describe the feeling.  I will buy the CD and put the album cover in her baby book. 

These little triumphs, so sweet when  you have a child with a developmental delay.  She has taught me so much.  We may have had challenges, but we experience something so much sweeter when there are victories.  We appreciate all the little things so much more.  We never take for granted, not even for a second, her talking, her jumping, her SINGING.