Category: apraxia blog

  • Still we rise

    Still we rise

    I received all of Ashlynn’s reports from her re-evaluation.  I knew it would be hard.  It’s hard to read those scores and things about your baby.  However, I was also proud.  So proud of how far she has come.  She is the hardest working child I know.  The social worker and special education teacher seem to understand her the best.  They listed her strengths, which are many.  They were thoughtful in their words, and I could tell they both believe in her success.

    Perhaps that’s why it came more as a shock to read the speech report.  It is too painful to summarize.  Maybe in another blog post, years down the road.  Not now.  Suffice it to say, there were no strengths listed.  So much of what she can’t do (which I know) without praising how far she has come and what she can do.

    I was upset to learn she tested her in the classroom.  Ashlynn’s attention severely impacts performance.   Doesn’t she know this?  Why wouldn’t you take her to a quiet room?

    Well after reading the report, it would seem apparent to me this woman doesn’t like my child and doesn’t see her potential.  Maybe that’s why she continued to only receive 30 minutes of therapy IN the classroom despite a report that says she is severely deficient in essentially every area of speech and language.  I’m not even the most upset about the numbers.  There were things Ashlynn didn’t do on the test I know she can do.  I’ve SEEN her do it. I’m an SLP, I can assure you….she can do it.  Why then didn’t this woman qualify in her report that despite not performing on the test, she can do x,y & z?

    No matter.  I have my answer.

    I guess when you don’t believe in someone, what’s the point in trying?

    I’m crying as I wrote that, but I refuse to cry anymore.  There are people who believe in my daughter, and people who aren’t just me.

    I took her this morning and told her “Ashlynn, I just want you to know you are smart.  You are kind and you’re a hard worker.  You can be anything you want to be.  You can do anything you want to do.”  and you know what that girl said?

    “I know mommy.”

    Before I enter this IEP meeting, I have Maya Angelou’s words running through my head. Ashlynn…..WE WILL RISE

    You may write me down in history
    With your bitter, twisted lies,
    You may tread me in the very dirt
    But still, like dust, I’ll rise.

    Did you want to see me broken?
    Bowed head and lowered eyes?
    Shoulders falling down like teardrops.
    Weakened by my soulful cries.

    You may shoot me with your words,
    You may cut me with your eyes,
    You may kill me with your hatefulness,
    But still, like air, I’ll rise.

     

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  • Am I the only one?

    “Lord woman.  We need a jet airplane, a case of wine, and a few days to ourselves.  We are living parallel lives.”

    I received this text today from a mom I have never met, but who I feel I must have known my entire life.  I found her through the marvel and wonder of the internet, and in only a year’s time, I feel I know her life story….not because she has told me, but because she too has a child with global apraxia and sensory processing disorder.  He is Ashlynn’s age, and each time I write a blog post, somewhere in Oklahoma, more times than not, a young six year old boy and his mother are going through the same things we are.

    The experiences range from the emotional joy of seeing them pedal for the first time wearing their smiles of pure joy while tears of joy run down ours……. to the mundane task of cracking an egg perfectly for the first time.

    Whatever it has been…struggling to write their name, being pegged as cognitively deficient, or being the best charmer this side of the Mississippi; our children, and now us, their mothers,  are truly kindred souls.

    Literally while I was in the midst of emailing Ashlynn’s OT explaining I want the sensory profile in her IEP on Friday to give a full picture of her attention issues and not just ADD, I receive this text from my Oklahoma friend:

    “How is Ashlynn’s attention span?”

    I knew immediately she meant her son’s sucks and she was looking to see if it was the same for Ashlynnn.  I know she didn’t say that, but I knew before she said it that that’s where it was going.

    I actually feel blessed for these moments.  In these moments when God seems to whisper, “you can do this.  You are not alone.  I am here for you.”

    Sometimes it comes out of nowhere.  Again through the marvels of the internet, I know another mommy to a child who has global apraxia, and this mommy is also an SLP!  Global apraxia is so rare, but it doesn’t seem that way when I have others to talk to.  Others sharing my exact same experience.  Somehow she always knows just what to say.  Sometimes, it’s just APRAXIA SUCKS, and it means so much more coming from her.  She just *gets* me.

    I love this quote.

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    I don’t care that I haven’t actually met either of these women face to face and I don’t care if people think I’m crazy.  Truth is, I already know them and they already know me, in a deeper way than some who see me face to face ever will….

    And one day there will be a jet airplane and a case of wine.  I look forward to it.  Until then….

  • What if we don’t prove them wrong?

    What if we don’t prove them wrong?

    I had a client recently who told me a well-meaning friend called her five year old son with apraxia “retarded.”  Apparently he meant it in a “well-meaning way” asking about services, but understandably the term shocked, appalled, angered, and then saddened her. Isn’t it interesting what we all presume about a child based on nothing more than their speech?

    She went onto say she didn’t even correct him because at this point she’s just tired.  She’s just tired of explaining it and what did it matter anyway.  She also went on to say she was mad at apraxia all week, and she wished they were in the future when she will hunt this man down and show him her successful, happy, thriving, “retarded” son.

    I smiled.  That moment.  Yes.

    What, when, and where will that moment be?  I know it will come.  I know one day, A will have her moment in the sun.  Maybe others won’t even know it is her moment.  Maybe it will just seem completely normal and average, but to me, I will revel in her moment.  I will cry in her moment.  I will cry tears of joy.  Tears no one may understand.  Maybe she won’t even understand.

    Will she roll her eyes in typical teen fashion and scold me for embarrassing her?  Will she smile too from the pride she feels in her own self?

    Yes.  That moment.

    I talk about that moment with every mother who has a child with apraxia.  That moment when our children will prove them all wrong, even if “them all” will be long gone or distant memories.  Hurtful memories are never too distant when their pain was so raw, and they seem to leave open wounds on our hearts and in our minds, seemingly unaffected by the passage of time.

    That moment.

    When the same eyes that cried tears of fear and sadness will now drop tears of triumph, victory, and pride.

    That moment.

    The vision of that moment, whatever it may be, keeps me going.  Keeps me fighting.  Keeps me working.  Keeps me hoping.

    I know it will be there.  Just like I knew she would talk.  Just like I knew she would sing.  Just like I knew she would ride her tricycle.  That moment has and will always be there, and in that moment, nothing on this planet will be sweeter.

    In that moment, maybe I shouldn’t look at it as proving them all wrong, but rather proving US right.

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  • 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.

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  • Where are the dads in the therapy process?

    Working in the schools, I often don’t have the chance to talk to parents as much as I would like.  Though there are the obligatory IEP meetings, it’s not the same as being able to see the parents every week and chat about speech therapy; or better yet, having the parents right there in the session with me.

    To date, I have seen a little over 20 children who have Childhood Apraxia of Speech, and for all of them, it was their mother with whom I had contact first.  Isn’t that interesting?  Not 50%, 80% or even 90%.  100%!!

    Now don’t think I’m going to start bashing men.  Not at all.  Actually, this post aims to praise these unsung heroes, often standing in the background, but I’ll get to that in a minute.

    When I was at bootcamp, David Hammer touched on an interesting topic I don’t think many SLP’s think about.  Men and women may be at very different stages with the child’s diagnosis.  Though important, what really stuck with me that I wrote down, was that “women seem to sometimes form a symbiotic relationship with the child.”  I nodded my head.  That no doubt was true of me and Ashlynn.  He went onto say, that may hurt a marriage.  Men may not understand that relationship, and are left to wonder where their wife went.  He always has parents fill out a questionnaire, he said. He asks the mother and father to rate their worry on a scale of 1-10.  Mothers are usually on the high end, with fathers usually being on the lower end.  I say usually, because of course there are exceptions to all broad stroked brushes.

    Anyway, not only have I personally experienced this, but I see it time and time again with the mothers of whom I am now able to get to know better.

    When a child is nonverbal, let’s say a baby, parents anticipate his needs.  They know the different cries, the different giggles, the facial expressions, the body language.  We do this because a baby can’t TELL us what they need.  As Ashlynn grew but still couldn’t tell me when she was: hungry, thirsty, sad, hurt, or scared, my heart broke a little more each time.  When she still couldn’t call out to me “mama” but would just wait in her bed until I came and got her, my sadness would mount a little higher.  When she was frustrated and would resort to stamping her feet or throwing herself to the ground and I would plead with her to just say “no,” my desperation only intensified.  When a piece of my hair had gotten itself wrapped around her little toe creating a tourniquet, so much so that we had to go urgent care, and she had spoken not even a cry; my fear and protective instincts kicked into full gear.  I could go on, but suffice it to say, yes, yes I guess I did have a symbiotic relationship with my sweet daughter, because if I couldn’t anticipate her needs, who was going to?  She NEEDED me, even if she didn’t know it.

    I see those feelings of sadness, desperation, fear, and hope in all the eyes of the mothers I have met.  In fact, on a recent intake, I was apologizing for having to ask questions about the child’s expressive language that I knew the parents would have to say no to. However, to maintain the validity of the test, I am still required to ask.  As I ask those questions, I think about the stupid baby development questionnaires at the pediatrician’s office that killed me every time.  Every time she was behind in EVERY area, and EVERY time, it freaking sucked…but I digress.  Back to this client and his parents.  After my apology, the dad interjected that it was really okay.  They know the reality and it doesn’t bother him.  Before I could answer, his wife snapped at him saying, “her daughter has apraxia too, so she understands. ”  He looked confused, so I told him that even though I knew and continue to know the reality, it hurts every time I am faced with her delays.

    Oh mothers. We become crazy over our own children don’t we?

    That’s why I wanted to take the time to share what I see from those tall shadows hanging back in the corner.  The realists, the fixers, the large shoulders who hold our small children and maybe our tears.  Though they may not be who I meet first, they are certainly always there at the final finish line.  When the mothers have been worn down from their endless worrying, on the verge of breakdowns from the exhaustion; it is the fathers who bring their children to therapy.  It is the fathers who seem to have some amazing ability to compartmentalize their feelings of sadness and fear, and who push forward when their wives just can’t bear another therapy session.

    One father I met basically took over my role and became the best SLP for his son.  I remember toward the end of therapy, we were working on /s/ blends, and they had to skip a week because they were going skiing.  When they came back and I was asking the kiddo about his vacation, dad kept interjecting “wait..where did we go?  Was it SSSSSteamboat?”  “Where did mommy and daddy get coffee?  Was it SSSStarbucks?”  and when the child dropped something it was dad who piped up “uh oh!  Did you SSSSpill it?”  I looked on and smiled.  Yes, it was mom who brought him in on the verge of tears, but it was dad who picked up and finished the pieces.  Well done team.

    Currently, I have 6 kids in private practice with CAS.  Do you want to know the track record for how many of the dads either share the responsibility of taking them to therapy or who are the only person currently bringing them to therapy?  100%  Yep….you read that right.  Once the child starts making progress and the mother feels she can step back and breathe, it’s usually the dads who see it through to the finish.  No, they may not pour over every report, or remember the homework (to many a mothers exasperation), but they are there, every week.  Many have red eyes from working all day, since I see kids on nights and weekends.  Many have laptops in tow, working while we do therapy.  All of them burst with pride at every success.  I see it on their faces.  I’ve seen the tallest, quietest, and burliest man cry.  I see them pat their children on the head with big smiles.

    I see you dads, I do.  I see you and I thank you, with the biggest thank you going to my daughter’s dad. We love you.  Thank you for sticking by us, even if you were criticized, misunderstood, and neglected.  Thank you for maybe not being totally prepared for the race, but running the marathon while cheering all the way.  Thank you for your strength, your reality checks,  and your patience.  But most of all, thank you for loving your child the way you knew how.  The only way a father could.

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  • 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 🙂