SLP Mommy of Apraxia

Tag: apraxia and academics

  • What’s in a number? Why I refused cognitive testing.

    What’s in a number? I refused cognitive testing today at Ashlynn’s school.  Despite me saying I was so sure about not doing it two months ago, I still agonized over the decision until today.  Today, the psychologist and myself finally had a chance to chat.  She has 20 years of experience and has been working with preschool kids exclusively.  She sounded smart, thoughtful, and honest.

    As I ran through my list of concerns to her, I didn’t realize how emotional I still am about it.  The more I talked about how I don’t feel a cognitive test would be valid right now and why, the more upset I became.  I really have no idea why.  Maybe I can process that another time.  I just know the more I made a case for myself and Ashlynn, the more I realized I already knew my decision was “no.”

    The woman had to agree that her global apraxia (s) would impact performance, which in turn would impact the score “the number,” I thought to myself..   She also reminded me I might get a score (number)  I don’t like.

    It all comes back to that damn score and my post outlining concerns about this testing: Accuracy of IQ scores with global apraxia.

    I know there are professionals who would read the testing and use it for programming, but I also know there are professionals who go straight to that “number.”  They want the quick and dirty FSIQ, full scale IQ, and make a judgement on a kid just from that.  People working with a child who will make a blanket judgement about their capability (or lack there of) based on A NUMBER.  I’ve seen teachers and even principles ask for that number, and did they read the report?  Did they read all the disclaimers or qualifying statements?  No.  Why would they do that?  They have that number.  They know what the kid is capable of.

    Well that’s not happening to my kid.

    She is not a number.  She is not a score.  Maybe one day, probably one day in the future I will consent to that particular testing, but today is not the day.  Her body isn’t yet cooperating enough to really show what her mind knows.

    I could be wrong, maybe I’m being sensitive, but I see them looking at me like I’m in some sort of denial.  I can’t explain it, but my friend Kim, an SLP in NY who also has a kiddo with global apraxia summed it up best.  “They see her as more disabled.  They want to show you.”  And that is exactly right.  They want me to see a number in black and white as some sort of proof that she is more disabled than I believe her to be.

    There’s just one problem.  They don’t see what I see.  Ever since Ashlynn started talking, what the school saw lagged behind what she was doing at home.  Ashlynn said her first word “hi” at 1 year and said it consistently and on demand.  When she entered school at 3, it took her half the year to utter it to anyone .  The SLP had to work on that, and finally a note came home that said she did it without prompting.  I was happy she was doing it at school, but I mean, this wasn’t progress to me.  She already said hi without prompting.

    That’s just the first example in what would be many.

    “She’s counting consistently to 5!”  I smile.  She’s been counting to 20 (skipping 13) for months now.

    “She knows the letters of her name!”  I smile.  She can find or point to most of the letters when we are home.  At least the SPED teacher’s assessment was more accurate, but it still isn’t what Ashlynn shows here at home.

    “She’s talking to peers, but still doesn’t have a lot of pretend play.”  She plays pretend games with her brother everyday at home.  Another half smile from me.

    The list goes on.  Bottom line, I always say a mother is the expert on her child, and she doesn’t have to be in the educational field.  We KNOW our children.  We live and breathe them.  If Ashlynn has yet to show what she actually knows in 3 years of being in school, am I really to think she will perform accurately on a standardized, formal assessment??

    On the consent form the SLP wrote “mom does not agree to cognitive testing.”  To make it clear, I crossed that out and wrote “mom refused cognitive testing.”  I don’t know what got into me. I guess my claws came out.  I am refusing a number.  A number is just a number.  Now let’s get busy helping her reach her potential.

    numbers

  • 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!
  • Speech and Language with Post it Notes

    Speech and Language with Post it Notes

    My daughter loves Post it Notes.  LOVES them.  She loves writing some small scribble on them and then proudly sticking them up around the house to put on display.

    Today we drew pictures that included her target sounds to work on speech, but we also drew shapes to work on our pre-writing strokes for OT.

    Based on the response from my facebook post, my kid’s not alone in loving them!  Try it!  Easy and fun way to get speech practice in at home.

  • 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.


  • “She just needs more repetition than most.”

    “She just needs more repetition than most.”

    Today was Ashlynn’s Spring parent/teacher conference.  I don’t know what I expect really.  As much as most of the time is spent focusing on her strengths, all that hits me like a ton of bricks is what she ISN’T yet doing. My husband thought I was crazy.  He couldn’t come to the meeting today, but read the paper tonight at dinner and told me he felt it was predominantly positive.  Look at all the things she’s doing that she wasn’t doing last year at this time.

    True.

    I guess I just hate listening to all the positives while holding my breath and waiting to hear the “but…..” 

    It sucks.  I just leave there feeling desperate, sad, and worried, no matter how many positives they managed to come up with.

    Hearing all the buzz words I’ve used in meetings before, “needs more repetition than other children” “learns differently” “has a great attitude which is a huge asset”

    I guess I should focus on the positive though.  Her strength was in pro-social behavior and she even gets in trouble now for talking too much!  Um, what?  Talking too much??  She didn’t even talk to her peers last year in preschool so that is AWESOME.   Her language sample during sensory table was as follows:

    I help you?
    What doing?
    I’m making a pizza to baby.
    I like pink.
    You have purple.
    I sit here?
    I play with Austin?
    Blue goes right there, see?

    As an SLP, this is awesome.  She’s four years old and is using primarily 3-4 word sentences.  Still a little behind, but her sentence length is only a little under than what is expected for her age.  This is exciting.  Also, she was SO clueless about her colors last year.  It sounds like she’s finally starting to retain them.

    The report said “she is understood by most familiar people and strangers can usually understand her if she speaks slowly.”  That is also great news!  I need to revel in all of this progress.  Can’t I just remember when  I was freaked out she wasn’t talking to anyone and all I wished for was that she would talk?  I know….I NEED to….it’s just…then there is all the academic things she needs to know now.
    She still needs more practice recognizing and naming the letters in her name. She can count to ten and count up to five objects accurately using 1:1 correspondence.

    Okay, yay, that’s awesome…..except I know by the end of preschool they need to know ALL their letter names and letter sounds, count to 20, and be able to write their name by the time they enter Kindergarten.  The teacher tried to encourage me by saying, “well, she does have one more year in preschool.”  and then ended, “but summer is a critical time because a lot of kids do show some regression.” 

    Yes, yes that’s true.  I hope next March at her Spring parent/teacher conference we will be on target.  In the meantime, I am officially off my sabbatical of only being Ashlynn’s mom.  She needs me more than that.  I went out and bought a bunch of alphabet cards, foam letter puzzles, and a dry erase board.  I sorted the letters of her name into a bag, and we’re going to practice putting them in order and naming them every day.  We’re also going to go through the foam letters and name the letter and the sound daily.

    I downloaded a kid weekly planner so that Ashlynn can learn the days of the week and each day we can talk about what she is going to do, and then at the end of the day we can talk about what she did. 

    I printed out three picture sequence cards so she can practice putting them in order as well to encourage pre-reading and narrative abilities there too. 

    I’ve been depressed today just thinking about all of our hard work ahead, but tonight when I was working with Ashlynn, she’s not depressed at all.  She was thrilled to have 1:1 attention from her mama and just attacked it all with her positive attitude. 

    So here’s to a lot of work, but most importantly, a positive attitude to go with it.