SLP Mommy of Apraxia

Tag: Ashlynn update

  • “Oh my goodness!!” Ashlynn turns 5!

    “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

    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?

  • Why we need milestones, and why I can still be proud of my daughter.

    Why we need milestones, and why I can still be proud of my daughter.

    I recently read a blog article about not buying into speech and language milestones.  The writer asserts:

    “Because here’s what I think of traditional milestones: f*ck them…………My baby will do that when she’s ready. This is not the Olympics, people.”

    She went onto explain that parents seem to make milestones into some sort of competition, and she doesn’t want to buy into that.  I get her point probably even more poignantly that she does.  

    My child was late with all of her milestones, and because she was late, I felt the sting and continue to feel the sting every time someone else’s child on social media or in my life meets a milestone with which my daughter still struggles.   

    This author was already sick of the comparisons, real or imagined, and just wanted to enjoy her baby.  Yeah I can relate, but lucky for her it seems, her child was just on their own timeline and would still go on to develop typically.  Some kids aren’t so lucky, and those “milestones” become very important so that kids can get early intervention when they need it.

    Oh she goes onto say, “Is your pediatrician happy at your baby’s checkups? Good……remind yourself that no one’s counting.”

    Unless of course your pediatrician IS concerned, or worse they’re not and your child misses valuable early intervention.  

    Oh, and no one’s counting, unless of course you get to feel a punch to the gut when you are faced with low standard scores, percentile ranks, and descriptors like “definite dysfunction” or “severe apraxia of speech” or “below average,” in black and white reports that have your child’s name on the top.  Lucky for her, her pediatrician is happy and no one is counting.  

    What about the other kids she wasn’t considering who don’t meet them?  

    Yes, milestones make any parent crazy.  Yes, parents can get stuck on being overly proud of their offspring, but then again, they should be.  They’re the parent!  I’m proud of Ashlynn for other qualities that maybe some other kids her age don’t yet possess as adeptly including: 
    Empathy
    Sensitivity
    Kindness
    Thoughtfulness
    Optimism
    Perseverance
    Bravery
    Compassion

    And why shouldn’t I be?  I’m her parent, and I’m supposed to be proud of what she is good at.  I don’t look at other parents with disdain who have kids meeting or blowing the lid off the milestones.  Jealousy maybe, but not disdain.  I think, good for them.  They should be proud of their child,  and every child deserves and needs their parents to be proud of them for their unique God given talents.

    So, I decided to write a printable for the parents who are forced to look at milestones.  Who have googled milestones and felt the pit in their stomach when they know their child isn’t meeting them. I wrote this so that parents will not say “F*ck them” but will instead pull up their big girl panties, and get the help they need for their child, no matter how hard and painful it is.


    Speech and Language Milestones: Birth to 3




  • “I love you mommy!”

    “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.

  • Seeing the numbers in black and white are equivelant to a punch in the stomach

    Seeing the numbers in black and white are equivelant to a punch in the stomach

    This is the score I knew would be low, but still feels like a punch to the stomach when I see it in black and white.  Why is it so hard to see it in black in white??  I knew it would be low.  I KNEW it would be low.  The OT is my co-worker and friend.  She asked me if she could go over the report with me before she gave it to me.  I brushed her off explaining I had heard her give numerous reports to other parents.  I understand her report.  No need to cushion the blow.

    But the 4th percentile??  I’ve heard these scores at IEP meetings.  The 4th percentile means out of 100 kids, Ashlynn did better than 4.  Than 4!!  
    Sigh.
    I knew it would be low, but this hurts. My poor baby.
    “She would benefit from occupational therapy services to address gross and fine motor skills, self-help skills, attention, transitioning, and sensory processing skills.”
    So basically, Ashlynn needs help in every area the field of occupational therapy addresses.  I don’t know if that’s accurate but that’s what it feels like.
    On the sensory scales she has “definite dysfunction” in Balance and Motion, Planning and Ideas, and in Total Sensory Systems.  
    Double sigh.  “Definite Dysfunction” is fun to read.  Blah. 
    I”m sure there’s a plus side to all of this, and I’m sure I could find the silver lining like a I normally do and will; but for now, blah.  This sucks.  Apraxia sucks.  My daughter is too sweet to have something like this.  She doesn’t deserve it and I hate it.
  • You play dirt with me?

    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.