"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

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!

The high of summer! The fear of "back to school."

Oh summer, how I love thee. Filled with swimming lessons, play dates; visits to the park and zoo.

During summer, I get to see my children be children. Their carefree smiles light up a room, and the echoes of their laughter can be heard long after they lay down their head. Yes, therapy appointments are a way of life for Ashlynn, but even speech and occupational therapy bring positive updates from the session and we can quickly return to our days of play.

This summer I signed up to a few good facebook pages I found: MamaOT and Inspired Treehouse. I LOVE these pages! Instead of the packet of ideas I would get heaped upon my shoulders during the school year, these pages provide an idea a day to do with your child. Simple, easy, fun! When I just get one idea a day, the load seems MUCH more manageable. I was so inspired, I tried to do the same for speech and language on my SLP Mommy of Apraxia page, since I'm usually doing something related throughout my day with my kids since that at least, comes naturally to me. I really think they helped Ashlynn, and I felt good about incorporating some sort of speech, sensory, or occupational/physical therapy at home.

 My husband and I also saw HUGE improvements this summer in the motor realm. Ashlynn climbed a play structure that she had yet to conquer at our nearby park. Who knew how much core stability, bilateral hand coordination, and crossing midline play a part in climbing a simple play structure! Well, I'll tell you who know.

Parents of children who have dyspraxia!

At the local amusement park, she was riding the tea cups independently. My husband shot a video. During the first two go rounds she was just sitting there, but by the third go round she figured out how to spin the wheel to spin her teacup! You should hear my husband cheer. Who knew how much core strength, bilateral hand coordination, and crossing midline play a part in being able to operate a simple teacup ride.

 Oh yeah, parents of children who have dyspraxia.

 However, now summer is coming to an end. I see facebook posts ripe with updates along the lines of "I'm so happy school is coming up!" Or memes like this one:

Not me. School. Sigh. What can I say? I have a love/hate relationship with school.

 I firmly believe school helps children develop their social skills and gives them important language models, which is especially important for kids with speech and language delays. The first week my daughter went to school shortly after she turned three, she came home singing a tune I actually could decipher, and at that time she was nonverbal! That my friends, is the power of school!

 On the other hand, school brings new fears and new worries. I always thought, once she starts talking, I'll be okay.

 Not true.

Now I'm worried about her phonemic awareness skills, language lag, slow processing speed, and being able to write.

 My God how much do kids need to do and know now just to be ready for Kindergarten???

 I'm not looking forward to the IEP meeting, the parent/teacher conferences, the comparisons I try not to make when I'm visiting her classroom.

 Quite frankly.... It SUCKS. Apraxia STILL sucks!

 So no. I'm not ready for Ashlynn to go back to school. My SLP friend and mother to two young boys with apraxia who has a blog: Landon Journey just posted this song lyric the other day:

If I could make days last forever
If I could make wishes come true
I'd save every day like a treasure and then,
Again, I would spend them with you.

As my brother says though, "Life's not fair. Get used to it."

So farewell summer! I bid you adieu. You have been so kind to us this year. We have made castles in your warm sand, felt the glow of the sun upon our face, cooled off in your waters, and celebrated the milestones and successes at our pace. Though I'm anxious for the coming school year, I have faith you will be waiting on the other side.  Welcoming my children to your sunshine, casting light onto their beauty.

"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.

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.

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.

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.