SLP Mommy of Apraxia

Category: apraxia blog

  • 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

  • What can I find to be thankful for?

    turkey

     

    Thanksgiving 2014.  Ashlynn is 5 and Jace is 2.  I love these little guys.  This morning we made our annual thankful Turkeys.  This year Jace answered yes or no to my suggestions, and Ashlynn for the first time came up with her own with little difficulty.

    She’s thankful for her mommy (tear), daddy, Jace, and cousins.  She loves seeing her cousins and will get to see them today.

    I had her trace one of her hands after I had traced it in pencil, and she did a really good job.  We crumpled up tissue paper and glued it on to work on some fine motor skills, and lastly I had her write her name;  which is probably the one area that didn’t show much improvement from last year, but she’s trying and that’s important.

    Jace follows along beside her.  He colored his turkey and also glued on the tissue paper for feathers.  He quickly lost interest and went off to play.

    I like Thanksgiving for a lot of reasons, and the best being it’s a day where everyone is forced to think about what they are thankful for.  Gratitude goes a long way in fostering happiness in my opinion, and this day is ripe with it.

    Whatever the challenges one is facing, today is a day we can all look past those and focus on that with which we are truly blessed, because truth is, we all have things to be thankful for.

    I’m thankful for the small family Cody and I have created together.  I’m thankful for another year in which my kids can celebrate with both sets of Grandparents and aunts, uncles and cousins they know on both sides.

    For food in my pantry, heat in my house, and clothes on my body.  For careers we both love, for the children I’m honored to treat, and for a community of people who mean a lot to me that I never knew before apraxia wasn’t just something I treated, but something I’ve come to know very personally.

    For my health and the health of my children and their happy smiles.  For their snuggles and random kisses.  For our carefree dances and silly faces.

    For the everyday blessings that I take for granted.

     

  • What exactly DO I want to hear at parent teacher conference?

    What exactly DO I want to hear at parent teacher conference?

    I had Ashlynn’s Fall parent-teacher conference for this, her last year of Pre-K.   The teacher gave me a HUGE packet for Pre-school standards for my review, and said she didn’t need to go through all of it.

    Um…okay.

     

    She showed me a picture Ashlynn had drawn the first day of school of a person with her name on the paper, and then another current picture of a person with her name on it.  There was improvement in both.  Okay…..cool.

    Then she said she had an idea to work on the morning routine.  Every morning the kids are to complete a series of 4 steps before the parents leave.  1.) Hang up Coat 2.) Wash Hands 3.) Check in 4.) Write name.

    Despite three months of doing the same thing, Ashlynn always comes in, gets distracted, and needs physical prompts to do each one.  She seems absolutely oblivious to verbal prompting.  It’s not ignoring either.  She is just so engrossed in what the other kids are doing, she loses focus.

    So,back to the teacher’s idea.  She wants me to physically take her to each station instead of verbally prompting her, to hopefully just get Ashlynn successfully completing the routine, and then we can add language.

    Ok….not a problem.

    She seemed relieved I agreed.  I mean, honestly, I’m not too wrapped up in the routine.  I need to know if my baby is making progress.  Is she going to be ready for Kindergarten?  What do I need to be doing at home?

    She really couldn’t pinpoint one thing.  Just kinda said Ashlynn is getting a lot of services to try and catch her up.

    She did say Ashlynn is engaging in collaborative (not just parallel) play, and is using her imagination to make up things.

    Okay….that’s good.

    Oh, and then she said she usually has the kids change seats on the carpet, but she thinks it would be best to keep Ashlynn in the front so she’s not as distracted.

    Okay…sounds good.  She should be getting preferential seating per her IEP, so…. I mean….how is my baby really doing?

    Sigh.

    I don’t know what I want.  The whole thing was underwhelming.  No rave reviews, but then no suggestions on how to help her.

    Not at that meeting anyway.  I gleaned plenty when I finally had a chance to read through the skill sets.

    Let me just pick one out here:

    Early Literacy Skills Assessment:

    Out of 14 pre-literacy skills, Ashlynn has four boxes checked.  🙁

    Damnit.

    FOUR!!! out of FOURTEEN!!!

    It makes me want to cry.  Nevermind, I am crying now.  It’s not fair.

    So, I’m going to tackle those skills.  Comprehension, Phonological Awareness, Alphabetic Principle, and Concepts about Print.

    That’s just reading FYI

    Cody is going to tackle the math part….and that’s a whole other list of checks she doesn’t have that I just can’t bear to look at again.  Thank God my husband is amazing and helps lift some of the burden.

    Stupid Apraxia.  Stupid Apraxia.  I hate apraxia.  I hate this damn disorder.  I HATE IT.  I HATE IT.

    Okay, tantrum over.  Put on your big girl panties Laura.  You don’t see Ashlynn crying about all the work there is to do.  In fact, she’s looking at your right now with alphabet cards in hand ready to learn.

    Alright bug, bug.  We haven’t come this far to raise our white flag yet.  Like I said in my post at the beginning of the year, “Bring it on.  We’re going to give it everything we got.”

     

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  • “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

  • Spooky Spider Web Game For Apraxia

    Spooky Spider Web Game For Apraxia

    Since Childhood Apraxia of Speech requires a different approach to treatment, principles of motor learning theory need to be driving therapy.   You can read more about this in my two interviews: Sharon Gretz interview and Ruth Stoeckel Interview

    Since getting 100-200 reps per session can be tedious and difficult to keep new and fresh, I came up with this fun Halloween game to play while you work on the child’s target sounds.
    Download it at my TpT store: Spooky Spiderweb game
    Happy Halloween!
  • Working our way out of the apraxia tunnel

    Working our way out of the apraxia tunnel

    Ashlynn has been saying things lately that are really showing higher level thinking. You’d think this would be glaringly apparent to me, but it really IS crazy how much language gives us an idea of what is going on in their brain.

    She’s been VERY interested in her schedule, and where she is going the next day.  I still haven’t made our visual schedule, but it’s on my to do list.  She usually asks me though while she’s laying in bed to go to sleep,
    “Mama, what are we doing today?”
    “you mean tomorrow?
    “yes”
    “Tell me that.  What are we doing tomorrow?”
    “What are we doing, tomahyo?”
    And then we talk about it.  She loves it when her grandma drops her off at school and I get to take her to her class.  This happens on Tuesday and Wednesdays.  She used to just keep asking 
    “you takin me to school?”
    I would reply, “Grandma will take you to school and I’ll take you to class.”

    I’ve been telling her that since she started school.  This week she finally said, 
    “What are we doing today mama?”
    “you mean tomorrow?”
    “yes”
    “Say that, What are we doing tomorrow?”
    Instead of repeating it back to me, she asked, “Grandma take me to school and you take me to class?”  
    This may seem small, but I was sooo proud!
    She also asks me who I work with almost everyday and I usually tell her my coworkers or colleagues.
    Well the other night, she said, “who you go to work with, mama?  Construction workers?” 
    LOL  
    I love it.  It makes my heart smile, and in those moments, I know everything is going to be okay.
    My last update has to do with school.  This is her third year of preschool.
    The first year she came home singing (with 1-2 sounds) the melody to the baby bumblebee song.  By the end of that year, she was also telling me who her friends were in school.
    The second year, she would tell me who she played with for that day, but that was usually the extent of her school reporting.
    This year, her third year, she’s identifying the letters of her name all over the place.  She also told me the other day when we were talking about arctic animals and that polar bears live there, 
    “I live in Colorado.”  
    Me: “Did you just say you live in Colorado?”
    Ashlynn: “Yes, my teacher tell me that.”  
    I sat their in awe.  This is the first time she’s ever told me something she’s learned at the school.  Heck, this was the first time she said something that she hadn’t learned from me or that I hadn’t heard her say before. 
    I see the light at the end of this tunnel that is apraxia.  To be honest, I’ve seen it for some time now, but I feel we’re getting closer to making it completely out.