SLP Mommy of Apraxia

Tag: Beating apraxia

  • Success WAS there, and we will revel in it.

    Exactly 18 months ago, I wrote one of my favorite and initially most popular posts: Lessons from a Tricycle.  

    At that time, Ashlynn was close to 4 and still could not pedal a tricycle.  I describe how we bought it a couple months before her third birthday when I was pregnant with my son.  A year later, I wrote that post and explained that she STILL wasn’t able to ride it.  When one has motor planning difficulties, the steps involved in riding a tricycle become glaring.

    Core strength
    Bilateral coordination
    Vestibular and propriocepive systems
    Balance
    Strength
    Endurance

    Who knew one needs ALL of the above to do a simple childhood rite of passage like ride a tricycle.  In that blogpost, I described “arched back and frazzled patience.”  My back hurt every time I tried to teach her how to ride.  I would lean over and pull or push her, while she struggled just to keep her feet on straight.  I wondered time and time again, will she ever actually get this down?  Do you have any idea how heartbreaking it was to have her “walk” her trike back home??  I knew deep inside though she would get it one day.  I wrote,

    “Success will surely be there, waiting more patiently than me.”

    After having my son, I realize how easy people have it.  I didn’t teach my son anything.  I gave him his big wheel and said “have fun.”  I didn’t have to teach him how to keep his feet on the pedals.  He just did it.  I didn’t have to remind him that while he was pedaling he had to look up and pay attention because he was going to fall off the curb.  He just did it, and I’m so proud of him.  He loves flying down the street on his big wheel shouting “faster!  FASTER!!”

    I remember my husband posting enthusiastically when Ashlynn had actually purposefully and independently pushed the pedal forward herself and propelled herself for at least two rotations.  We were so sure she had arrived.  That was it right?  She got it down, right?

    No, no it wasn’t.  The motor plan wasn’t quite carved out enough in her brain.  At least, that’s how I imagine it.  I imagine pathways in her brain as a ski slope full of thick powder.  Every motor activity requires her to carve a path herself to the bottom.  It’s hard.  It’s tiring, and when she gets back up the hill to try again, she may swerve off track and be forced to try again.

    Once the motor plan is mapped though?  Oh boy.  Then it’s like the groomed hill, wide and easier to maneuver.  I dare say we are beginning to revel in the groomed slopes.3b5621f62a9782ca81aaa1185f4ca8a8

    She rode her trike around the block tonight.  As I watched her in front of me, the sun was setting, and there she was….laughing, smiling, turning the handlebars when she was in danger of veering off the curb, and going as fast as she could and then stretching her legs out in front of her to feel the wind on her face.  This to me is childhood.. This to me is what apraxia had robbed from her for so long.  As I watched her, hair blowing carefree in the wind, the setting sun once again caught my gaze….and I realized, the sun was setting on a chapter in her life.   There it was….success…just as I predicted, waiting more patiently and more beautifully than I ever could have imagined.

     

    Here’s the video if you’re interested.  Warning: She’s so far ahead, she’s hard to see 🙂

     

  • It’s hard to explain how global apraxia affects so much

    It’s hard to explain how global apraxia affects so much

    We went on a Santa Train again this year at Georgetown Loop Railroad.  Ashlynn has never talked to Santa before.  When she was 3, she cried and clung to her dad for dear life.  When she was 4, we went on a different Santa Train, and though she wasn’t scared, she was too reserved to say anything audible enough for him to hear.

    This year a four year old girl was sitting across from us.  As her parents were asking her what she was going to ask Santa for, she eagerly said she wanted another Elsa doll.

    Ashlynn’s not really into Frozen, or any movie really.  Though each year we try, she just has no desire to sit and watch TV…much less a movie.  As for toys, we took her around a toy store three times leading up for her birthday, and though she was mildly interested, it’s just not like the “kid in a toy store” image that might usually come to mind.

    Fortunately, I have my friend Kim, an SLP who also has a son with global apraxia.  I also have a 7 year old client with it too, and interestingly enough, they all are similar in these areas.  They don’t have an overt interest in movies, TV, or toys.  Why?  I really don’t know.  The toys I think has to do with their struggle to play with toys they would cognitively be interested in, but can’t mainuplate because of the gross and fine motor apraxia.  That happened to her last year when she actually asked for baby clothes but then couldn’t put them on or take them off the baby.   To engage in imaginative play is equally as challenging due to their delayed speech and language skills.  Who knows.

    All I know I I started to feel sad listening to this four year old chatter away about what she wanted….until it was Ashlynn’s turn to sit with Santa.  Though he kept asking her what she wanted, what she wanted was to talk.  She asked him “What’s this?” and “What are you doing?” until he smiled and then moved onto another kid.  As he was walking away, she grabbed me frantically and said, “I need presents!!”

    Smile

    Oh Ashlynn.  That’s my Ashlynn and she’s perfect and in that moment I had nothing to be sad about. All she wanted, all she’s ever wanted is to engage people in conversation, and then as an afterthought she thinks about herself.  Even then though, she had nothing specific.  Just presents.  From the outside I’m sure she looks like a typical 5 year old, and it’s hard to explain just how involved her needs are, or how they affect so much.

    However, today, she asked for presents from Santa Clause just like a typical 5 year old and she will find them waiting for her on Christmas morning.

    from the outside in

  • “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

  • Last year of Pre-K

    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.
    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.”

    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!”

    “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.