SLP Mommy of Apraxia

Tag: apraxia and confidence

  • 1st Day of 3rd Grade

    1st Day of 3rd Grade

    My dearest Ashlynn,

    Your courage amazes me daily.  It inspires me and pushes me beyond any limit real or imagined.  Today was your first day of 3rd grade.  You have been waiting for this day since the last day of 2nd grade.  Actually, quite possibly since the first day of 2nd grade when you told me,“After 2nd grade you I will be in 3rd grade!”

    I emphatically responded,

    “We need to make it through 2nd grade first!”

    We bought you a new backpack, new outfit, new shoes, and you got a new haircut.  Two out of the four items went as planned.  The backpack and new shoes went off without a hitch.  The other two? Well Ashlynn, it’s just not our style to have a few hiccups is it?

    Getting a new haircut is always an adventure.  Your dyspraxia, ADHD, SPD, and receptive language issues make following specific commands somewhat challenging don’t they?  I stepped in to help guide your head where it needed to go so the stylist would stop reminding you of how hard it was for you to follow those simple commands.

    Then came the new outfit.  We picked it out together!  I didn’t think we needed to try it on because I know what size you are and I was sure it would fit.  Last night we hung it up on your dresser anticipating the first day of school! However, this morning when you went to put it on you were more confused than ever.  I came into help and realized I had bought you a romper! That flowey material fooled both of us didn’t it!!  I could have sworn it was a dress.  A romper though?  Yeah, not a friend to the girl who has dyspraxia.  I apologized and offered other options in your closet.  We chose a pretty sun dress you hadn’t worn much, but I still felt bad.

    You took it in stride though!

    All morning you were jumping up an down and excited to go to school and I marveled at you.  School is so hard for you.  Last year you came home with bloodied shirts or completely different shirts because you had so thoroughly stained yours from picking your finger nails.  Almost every assignment you completed you struggled in, and many times you ate and played alone.  How on Earth were you excited to go back to that?

    Three days before we saw an ex client of mine who is your age.  Her apraxia is resolved and she has residual learning disabilities.  She told us how she didn’t want to go back to school because she was bullied and you sat there un-phased.   I thought to myself if I were in either of your shoes I would feel like my client; yet I was so grateful you are you.

    You have a strength and internal resolve I am working towards.  You have courage and resiliency I have yet to conquer.  Where my instinct is to run back your instinct is to jump forward.

    I am inspired by you.  I am always going to be here by your side.  I’m going to love you, but I’m going to push you.  I’m going to do everything in my power to help you obtain the tools you need in order to live life on your terms.

    It took me many years to believe and even more to practice this simple advice:

    Heck it takes grown men and women to follow this advice, and let’s face it.  Some die before they ever follow this advice at all. YOU embody this.  YOU are a living testament to this.

    Pursue it all Ashlynn!  I’ve always got your back and I’m your biggest fan!

    Love,

    Mommy

  • The 6th apraxia awareness day brought smiles, tears, and a jaw dropping moment

    Can it be that this is officially the SIXTH Apraxia Awareness Day?  The first one was way back in 2013 and was fresh off the heels of Ashlynn’s diagnosis.  At that time I was in such a sad place and having an awareness day was uplifting, empowering, inspiring, and amazing.

    Not much has changed, but for different reasons.  This was the first year I decided to go into Ashlynn’s classroom and officially “teach” about apraxia to her classmates.  I hadn’t done it before because apraxia didn’t seem to be keeping her from living her life and making friends, but this year had been different.  Though Ashlynn’s apraxic component is considered mostly resolved, her co-morbidities of dysarthria and language disorder impact her word finding, ability to get her words out, and make her talk slower and sound a little slushier and not as crisp as other students.

    I had a 5th grade student I have seen since second grade come and give the presentation with me.  Interestingly enough, I met and started treating him in second grade, when he was in the very same classroom that Ashlynn was currently in.  As we sat in front of 86 second graders, I saw his confidence grow throughout the presentation.

    I sat behind him ready to clarify anything that didn’t need clarifying.  Like a pro, he listed the three main causes:
    1.) Genetic
    2.) Brain injury
    3.) No known cause and just present at birth

    He was adamant to me beforehand that the kids know you “can’t catch it.”  I thought it was odd and told him I thought most kids wouldn’t think that, but if he wanted to say that it was a valid point.  I was shocked, I mean stunned, when I tell you what happened when he asked those 86 second graders if they thought they could catch it like a cold.

    THEY ALL RAISED THEIR HANDS.

    I was shocked, but my 5th grade student wasn’t. He knew.  I know a lot about apraxia, but this was new.  I had no idea kids thought they could catch it just by hanging out with her.  Oh my gosh!!  Had I known this I would have been teaching about apraxia to her class EVERY awareness day since she was in preschool.    Like a professional, and with his apraxia on display, my 5th grade student explained apraxia was nothing like a cold and you couldn’t catch it.  He reiterated the three main causes and moved on.  I had to have been beaming with pride from behind him.

    Next up was our demonstrations on what it feels like to have apraxia. My student gave the example of having the kids imagine they wanted to say “dog” and they knew the word “dog” but when they opened their mouth they said something completely different like “bwog,” and no matter how much you know how to say it and what you want to say, your mouth won’t say it correctly.  The second graders eyes were big and curious.

    Since Ashlynn also has extreme word finding issues compounded by anxiety, I had prepared an activity in which we called up two students.  I had a sentence written on a piece of paper that student 1 would have to act out for student 2 to guess without saying words.

    My student called on a boy and a girl each time for the first three examples.  For the fourth, just like a true teacher, he asked Ashlynn to call on two students.  She was excited to have control.

    After this activity it was time for questions.

    “How many kids have it?” asked one student.  About to jump in this 5th grader said,
    “1 in every two schools.”  What a great way to say 1 in every 1000 students!

    “What does it feel like?  Does it hurt?” asked one child.  The 5th grader answered that it doesn’t hurt physically but it hurts emotionally.  Actually he had an apraxic moment and said the opposite, but I was there to make the minor clarification and he went on to explain that it hurts emotionally.  “It hurts when you want to get something out and you can’t and it makes you sad.”  I seriously think I had tears in my eyes.  He was getting through to these kids.

    The day was so full circle.  When I met this 5th grader, I had just completed my Apraxia-Kids bootcamp training and was ready to help and empower children with apraxia.  Here I sat three years later from bootcamp and six years later from Ashlynn’s diagnosis beaming with pride.  What I learned today was our kids with apraxia are going to be okay.  Empowering them with knowledge and giving them a platform to educate and be their true authentic selves is going to be the winning formula.  Beyond resolving or not resolving, having residual effects or not, empowering our kids with knowledge and then giving them the opportunity to educate is going to change the world.  It really is, and I know our kids may struggle in school, but they are going to win in LIFE.

    We sent the kids away with treat bags and an informational tag on apraxia.  I had planned on reading the book in the picture but decided against it because the demonstration was so much more powerful and interactive.

    At the end, my 5th grade student passed out treat bags with Ashlynn.  Where Ashlynn was shy and reserved, he encouraged her to stand with him and help him pass them out.  She beamed and felt special.  I looked at them and saw the passing of the torch.  I had empowered him, and here he was empowering and encouraging my daughter.  I just sat back and watched with tears of gratitude in my eyes.  I have told him multiple times, begged him actually to come back and find me somehow when he is older.  I know he is destined for so many greater things than just his apraxia.  In fact, apraxia has prepared him to be the incredible person I know he’s going to be.

  • Some kids are just smarter?

    Some kids are just smarter?

    “Well, my brothers have a little bit of a bigger brain, so they are a little bit smarter than me,” declared a second grade student I see who just happens to have apraxia.

    “I don’t believe they are smarter than you, or have a bigger brain than you,” I retorted.  He was so sure though.  Not in a defeated, depressed way.  No, more in a matter of fact, I know more than you way, and he was just so sure.  “My brother has a bigger brain, so that’s why he can build better Lego buildings than I can,” he said.

    “Sweetie, your brother is in SIXTH grade and you are only in SECOND.  Have you ever thought that is why he can build bigger Lego’s than you?”  I argued.

    “No, he’s just smarter.  His brain is bigger,” he replied.

    Sigh.  Where do I start? I can’t let this go.  I’m supposed to be doing speech therapy, but this is too important to brush off.

    “I don’t care what you think, or how you sure you are,” I said, “I don’t believe their brain is bigger than yours.”

    He listened.

    “Sweetie, my husband is super AWESOME at Legos.  He can put them together faster than anyone I have ever met. He is an engineer.  An engineer is a person who tends to be good at math and good at figuring out how things work.  I would make a terrible engineer.  Not only can I not do Legos or figure out how things work, I really don’t care.  You know what I’m good at?  I’m good at talking.  I’m good at writing.  I LOVE words and language.  My husband, you know, the Lego guy?  He doesn’t like writing.  He doesn’t care for words.  So, who is smarter?”

    His eyes got really big.

    “Who is smarter??  Who has the bigger brain??” I demanded.

    “I…I ….don’t know.”

    “Exactly.  No one has a bigger brain.  We are both smart at different things, and you are too.”

    He smiled.  I hope he heard me.  What a tragedy it would be for this child to think he is not smart.  What a tragedy it is for ANY child to think they aren’t smart.  Every child has gifts in different areas, and our job is to make sure they all know it, and they all find it.

     

    einstein-quote

  • Ashlynn summer speech therapy 3.9 years

    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

    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.


  • Ashlynn Trick or Treat

    Ashlynn Trick or Treat

    Ashlynn turned four this Halloween, and it brought another milestone: being able to say “trick or treat” and be understood!  When she was two, she couldn’t even attempt to say it.  At three, she could say “ee o ee” but then clammed up and wouldn’t say it on command.

    At four though, we had success!  She still needed prompting and encouragement, but she was able to say an intelligible “trick or treat” and this was her best Halloween yet.  You can click on the link at http://www.youtube.com/watch?v=l2BsWccC4Nk to hear it.  Definitely one proud momma here 🙂  Happy Halloween!

    https://youtube.com/watch?v=l2BsWccC4Nk%3Fversion%3D3%26autohide%3D1%26showinfo%3D1%26autoplay%3D1%26autohide%3D1%26attribution_tag%3Dtgo3ZEvB8eCF38nnzTbm0g%26feature%3Dshare