"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

Annual IEP - year 3

It's been two years since Ashlynn was first identified as having CAS.  She is now almost 5.  At her first IEP meeting, I remember praying that she would talk.  If she would just talk, everything would be okay.

Last year, she was talking, but they explained she had a hard time fitting in with her peer group.  She would tend to just repeat what others said, but she was at least "staying in the game" with this strategy.  At that meeting, I remember they also said they were concerned with her attention.  At one of the parent teacher conferences last year, they told me she couldn't identify the letters of her name.  I worked on it every night.  I bought letter puzzles, alphabet cards, and we practiced identifying the letters of her name and sequencing them.

This year, she can identify ALL the letters of her name.  She notices them on billboards and store signs.  She has this down....it's just she has 20 more letters to learn before she goes to Kindergarten next year.  Sweet Jesus, why do babies need to know so much so early now!!

They remain concerned with her attention.  It doesn't really look like ADHD, but maybe it's something we need to look at later.  Oh, and then there is the cognitive test.  They want one of those in the Spring too.  I don't want a cognitive test.  My immediate reaction is "no."  However, Deb, her private SLP and my friend pointed out that I should find out the reason they want the test.  If they want it to determine a label....no.  If they want it to find out other information to help her programming, maybe.

I'm just worried because with her difficulties with fine motor skills, speech and language, and visual motor.....I know the score is going to come out low, and quite frankly, I can't look at that right now.  Maybe I'm in denial, but I just don't see how they can get an accurate score when she has so many difficulties that could influence it right now.

Another issue I was flabbergasted to learn, was that Ashlylnn can't categorize.  This is where children identify items based on similarities.  They sort items.  I clarified if they tested her receptively so she didn't have to name them.  They did.  The school SLP said she had three categories: clothing, toys, and food and she didn't categorize them correctly.  They did say attention could have been a factor, but then I took her to private SLP and she confirmed it.  Seriously??  I just did an activity this summer that she rocked it.  Sigh.  I don't know why she's not transferring it, but I can't believe I have another basic skill that we need to work on.

Her goal to sequence pictures was not met.  I knew this though.  She simply doesn't look at the pictures and their details to realize what comes first, second, or third.  I need to work on that.

And this folks is why even after attending probably hundreds of IEP meetings in my career, I absolutely LOATHE them when it's my own kid.  Despite all of the positives ( oh did I mention she's asking questions and socializing with peers), I have to hear all of the problems.  All of the things I need to work on and my shoulders feel so heavy.  Despite this though, I have to pull on my big girl panties and attack it.  I have to put aside my fears and just step one foot in front of the other.

I'm choosing to think about ALL the gains she's made in PT and OT recently.  The PT said she could navigate ALL the playground equipment now like any other kid, and even shows beginning swinging skills of pumping her legs that other kids her age don't have yet.  My husband beamed.  This is his area.  This is his hard work paying off.

Her legs and core are getting stronger.  In private OT she just pedaled her Big Wheel for 14 consecutive rotations!!  She fatigues, but she's getting stronger.

Her power wheel that was too much to motor plan pushing the throttle AND steering.....well she's doing both now on our sidewalk.

In private swim lessons she's now holding her breath for 5 seconds while she kicks her legs for two laps straight before she tires.  When I watch it, I cry because this girl almost drowned and she got right back up and attacks it.  Every time.  She attacks it.

If she attacks it, what excuse do I have?  My husband says every goal we've made she meets.  She does, it's just so much work and it stresses me out.  I'm terrified she'll have dyslexia on top of all of her learning difficulties.  I hate to see her struggle.  She's struggled all of her short life.  When will she get a break?

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.

Good teachers change lives

What a busy month!  Life definitely doesn't slow down just because I'm off for summer break!  I signed both the kids up for swimming lessons.  Ashlynn would be in the Guppy class for probably her 5th time, and Jace and I would be in the parent/tot class.

I decided that since it was the first day, and considering Ashlynn's aversion to water now following two traumatic pool events, here: I would stay on the side with Jace and watch to make sure she was ok. I realize now it was totally irrational, but I guess I was expecting she would have her same instructor from last year and she would be off and running.  She sure was excited at the thought of going swimming.  I snapped this photo while we were waiting for them to call off the classes.  Doesn't she look excited?

I have to admit, when they called off her instructor, he looked like he was 12.  Okay, not really, but he was young, new, a little hesitant himself.  Ashlynn refused to get in the water.  She cried hysterically as fear gripped her whenever they even mentioned it.  Another little boy in her class had autism, and his mom had to literally sit on the side and hold his arm or he would go swimming off under water, and another little boy had no desire to listen or follow directions.  I actually kinda felt bad for this kid as much as I did for Ashlynn.  He was in waaaaay over his head!

Week two, Ashlynn would let him take her out to practice skills, but she either had her arms gripping his face, her neck up, or her knees pulled to her chest.  She also refused to stand in the water and would only sit on the side of the pool.  It literally broke my heart.

There were some cute moments though.  When it was time to stand on the edge of the pool, she would hold the little boy's hand who had autism and talk to him and repeat the directions.  He never looked at her, but he seemed to listen and his mom seemed more than grateful.  Ashlynn was the only child to talk to him and she was the only person beside his mom that he would let hold his hand. I just thought, "Well that's Ashlynn.  Maybe she isn't here to learn to swim.  Maybe she has a bigger purpose."  Even though I was proud of her, my heart was still sad.  I lamented to my husband that I felt that she was actually worse than when she started swim lessons last year because now she wouldn't even get in the water.  

We tossed around private lessons and decided to do it.  I heard the instructor of my parent/tot class saying she and another instructor were the only two current certified staff.  I figured I'd go with her and had her write her number on the back of the card.  That was Thursday.  

On Monday, Ashlynn started her new two week session.  I just figured she would have the same boy, and I thought, well, maybe it's best because at least she knows him.  However, I was surprised when they put her in "Josh's" class.  I had seen Josh since last year.  He normally taught the older kids, or so I thought.  I would marvel about his amazing teaching ability and how his kids would respond to him.  I wished he taught the younger kids, but I had never seen him do so, until today.

Ashlynn went shyly with me holding her hand.  Instead of my usual speech of "Even though Ashlynn doesn't look like it, she has special needs and has a motor planning disorder that affects everything from her speech to her gross motor skills, so please keep an eye on her because she has had to be rescued twice" I said, "You teach little kids?  I only thought you taught older kids?"  He seemed surprised and said that was weird because he usually only teaches the little ones.  

I stepped back with Jace and turned around to see Ashlynn red faced, freaking out not wanting to get in the pool.  He put her in anyway and then bent his head in and said something to her ear.  I have no idea what he said, but she stopped crying.  Before I even knew it, I was in tears on the sideline watching her not only stand in the water but blow her bubbles and do her head bobs.  I sent text messages to my husband.  

When I looked up again, I saw this:

Full back float, head down, arms AND legs out relaxed, and trusting Josh.  She has NEVER, EVER, done this with anyone.  I looked on stunned and snapped another picture.  When she started to tense up, he leaned his head into her ear again and told her to trust him.  He told her he had her, and when she did it he gave her the biggest hug.  

Tears flowed.

To see the pride on her face, the confidence in her smile, the sparkle in her eyes....he did this in ONE day!! 

And what I realized was, I actually didn't care about the swimming.  I mean I do, but I was more proud of her being proud of herself.  He gave her confidence, he instilled a sense of accomplishment in herself and that is what being a teacher is all about.  He made her WANT to learn to swim.  

Good teachers change lives.

In this journey in apraxia, I realize and learn over and over and over again, that maybe we have to know the darkness to truly appreciate the light, and the light sure shone on us today.  

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” - Maya Angelou

I love, LOVE Maya Angelou.  I always have.  I was talking with a friend today who was concerned about her apraxic son talking so he can get a job one day.  In the midst of apraxia, in the midst of our children not speaking, us parents all get caught up in the thick, dense trees.  We all, including myself, miss the forest.  In the end, we all ultimately just want our kids to be happy.  We want them to have every opportunity to fulfill their dreams, which is why we cry, worry, and agonize over all the details.  Just recently, I've been kept up at night thinking about how my daughter needs to not only be able to point to letters, but she has to learn their names and sounds before Kindergarten.  Yes, she has one more year of Pre-K, but we already know her attention is an issue and she needs more repetition than most and she has apraxia which means even when she knows the letters she has word finding issues and...and...and.....

and...I stopped myself to remember the forest.  I want above all for Ashlynn to be happy.  This picture is from a shirt she wears that her Grandma Green bought her.  It is her to a tee, pun intended.  She is silly, she is happy, she is sweet, and she is kind.  I think the world needs more children and people like this.  

The political outlook has no time for this.  It's all about Race to the Top, No Child Left Behind, and more recently, the Common Core.  It's all about test scores and academic achievement.  Teachers are judged on their ability to teach by a test score.  

The world has and will have enough big test scores.  What the world needs more of, is big, happy hearts.  As Maya Angelou says, "people will forget what you said."  In my desire to hear her talk, I was really looking for the feeling of being told, "mommy, I love you."  If we listen close, it's the little hand that reaches out to us, it's in their hug and their big sloppy kiss that they might have because they have yet to pucker, and we know in their tears when we leave.  My daughter's heart is on her sleeve, and in her young four years she epitomizes already what Jesus said in John 3:18  

My little children, let us not love in word, neither in tongue; but in deed and in truth.  

and defies what Einstein mused on when he said,

"“Action speaks louder than words but not nearly as often.” 

Our kids' actions already speak louder than words!! They have learned a lesson in life some people fail to learn.  Though my daughter is talking in basic 4-6 word sentences now, she is still sweet, kind, and happy, and will still hug, smile, giggle, and hold someone's hand over talking.  People don't remember what she said or what she didn't say.  Everyone remembers how she makes them feel. 

 If this is the woman she is destined to become, than I think I can say as her mother she is successful.  

Her first "favorite"

Kids always seem to have a favorite flavor of the week. Parents probably promote this. What is your favorite color? What was your favorite animal at the zoo? What was your favorite candy you received on Halloween? What is your favorite TV show, movie, toy, food, dessert etc etc. if Ashlynn has ever been partial to anything, we have never known, until last weekend.

We went on a mini vacation basically planned around kid activities. Who knew that becoming a parent would also drastically change your idea of a dream vacation! We went down to our favorite Embassy Suites. There is a separation of the living room and bedroom so we can put our kids to bed and still have some quality time together, free happy hour for the parents, and free hot buffet breakfast for picky kids who have their choice of anything and everything to eat at no cost to us!

A pool for free swimming and hot tubbing is a bonus, and it's next to a bunch of family friendly places, like the Cheyenne mtn zoo. Oh, and it's also next to kid friendly restaurants like Old Chicago and TGI Fridays.

Coming back from the zoo my husband and I were full of "favorite" questions. "What was your favorite animal Ashlynn?" "Did you have fun?" "What was your favorite part?" She didn't really answer. As we got closer to the hotel, she inquired, "Where we goin?" We answered back to the hotel....and that's when we heard it. We heard her first favorite anything in that moment when she was 4.3.

"Yes? That hotel's my favorite!"

My husband laughed and verified, "That hotel's your favorite?"

"Yeah!" she replied.

He turned to me and said aloud what I was already thinking, "That was the first time she's ever said anything was her favorite!"

I don't think many parents with of typically developing kiddos remember what they said was their first favorite. I don't know my 19 month old sons yet, but I also am confident I won't be waiting two more years to hear his favorite anything. With Ashlynn though, we just have always wanted to know her thoughts, her dreams, her fears, her favorites! We knew she liked that hotel as she has been to it at least four times prior, but hearing it was her favorite was just something special that's hard to describe. It's like we finally get to HEAR these things in her own words, and not just from her smile.