SLP Mommy of Apraxia

Category: apraxia blog

  • It’s like juggling 8 balls at one time desperately hoping one doesn’t roll away

    It’s like juggling 8 balls at one time desperately hoping one doesn’t roll away

    There is not one day that goes by I don’t think of Ashlynn’s disability (ies).  As a basis of comparison, I have my four year old son.  He has some concerning behavior issues, and I do think (worry) about them often; however, I do not think of it EVERY SINGLE DAY.

    Apraxia and dyspraxia make that impossible.  There is always something else to worry about.  Something else in which I don’t feel like I’m doing enough.  Let’s take speech.  Her speech is intelligible (hallelujah praise Jesus my baby has her voice); however she also has dysarthria, which makes her overall speech slower, and she has a language processing problem heaped on top of that, which makes it extremely difficult to express herself, even though when she does you can understand her now.  She also has a lisp, which is pointless to work on right now because she doesn’t have her two front teeth.  That will wait, but it’s still on the  “to do” list.

    Oh, but then there is dyspraxia and it involves motor planning issues with gross and fine motor skills, which in turn, affect ALL of her ADL’s (Activities of Daily Living). This includes: dressing, toileting, feeding, hygiene, getting her shoes on the right freaking feet, putting on her pants that aren’t backward, brushing her teeth without it ending up all over the counter, or showering and actually coming out of the shower cleaner than you went in.

    I make her do all these things first independently, despite it taking 3x longer than her brother who is almost 3 years younger.  It would be so much easier to just get her dressed or brush her teeth for her, or shower her;  but I know with motor planning, EVERYTHING is going to take about 1000x more repetitions and because of that, I can’t let her slack.  I can’t do it for her.  I have to watch her struggle and sometimes cry for me to help her, and force her to do it because I know she can.  There are nights it breaks my heart when she begs me to just help her put on her shirt and I tell her no.  I tell her no for her own good.  I know it’s hard, but the brain has more plasticity now and she has to learn how to do these things, and the only way to get better is to do it herself over and over and over.

    I think about stuff down the road.  How the heck is she going to ever be able to do her hair?  She can brush it, but how do I teach her how to get it in a hair tie?  These things will never come easy for her.  She can’t even put a headband on straight. Should I buy a bra for her now and have her start practicing?  The list goes on and honestly, at times, it seems endless.

    I attended an executive functioning training recently, and many kids with global apraxia are going to have issues with executive functioning.  They just are.  Ashlynn is one of them.  There are things to do to help. A lot of things actually, but they need to be put in place.  A lot includes visuals, visual aids, etc.  I sat through the entire training thinking about application to Ashlynn (I was there to apply it to my students in the classroom).  I started stressing that I’m not teaching her these skills and if I don’t, there is only so much the school can do and she will be a mess as an adult.  I need to start working on that.

    Oh..but she has homework, and we need to work on that too because like with everything else, she needs about 1000x more repetitions than a peer and we are the only ones to help her get those reps in.

    Seriously, I just don’t know if there are enough hours in the day. I texted another apraxia mom and I knew she would get it and wouldn’t judge me.  I was right.  She responded,
    “There isn’t a moment that passes.  I hate how consuming it is.  I sometimes feel paralyzed by it.”

    She reminded me that our kids our capable, but they require the BEST of us constantly to be successful.

    She’s right.  All of it.  So here we are.  It’s all consuming. I said not a day, but she’s right, it’s not a moment passes without being reminded Ashlynn has global apraxia.  It’s not one area that’s affected.  Sometimes I wonder what it would be like to just worry about the speech, or just worry about the motor skills, or just worry about homework or just worry about executive functioning, or just worry about language processing.

    That’s not to downplay all the kids who have one or a couple of these problems, but it is to say that each problem adds an additional weight to my shoulders and sometimes it feels like I’m juggling 8 balls in the air and working desperately not to have any fall and roll away.  How do I keep them all in the air?  There is no answer….there is only what Michelle said…this disorder requires the best of us and not just sometimes, but CONSTANTLY so that we can be sure our children our successful.

    Taking pictures for a visual schedule to remind Ashlynn of the steps to going to the restroom.
  • Neurology, delays, a dream, and a miracle.

    Neurology, delays, a dream, and a miracle.

    Most parents of kids who have a child with global apraxia will at some point visit the neurologist.  It’s usually before the age of 7, which is the age Ashlynn is today.

    I remember the referral, although the dates are a little fuzzy.  We were either at Ashlynn’s 6 or 9 month checkup and I had to fill out one of those dreaded developmental screens.  Don’t get me wrong, as a professional I’m very, VERY pleased my pediatrician had them; but as a parent each question only served as a slap in my face to everything in which Ashlynn was behind and it was hard.  Really hard.

    Well anyway, I had mentioned Ashlynn had very tight calves (or heel cords) as the professionals view it.  The pediatrician, knowing I was in the profession tread lightly.  The result though was a possible referral to the neurologist.

    I declined.

    So curious to me now.  Why did I decline?  Why wouldn’t I have at least gone to the appointment?  The pediatrician, sensing my hesitation, told me to massage her calves in in the bathtub every night and come back and we could re-evaluate at her next well baby visit.  I pounced on the cop out and religiously massaged her calves every night.  By the time of her next visit, her heel cords were looser and she could flex her foot.  I remember being praised by the pediatrician for Ashlynn having such an involved mommy and she left it up to me if I still wanted the neuro referral.  Of course I said no.  I could help her.  I could do this.  I thought for sure when Ashlynn started walking, she would be a toe walker, but she wasn’t.  We had to remind her when she learned how to stand to keep putting her heel down, but you would never detect even a hint of toe walking now.

    Anyway, that’s water on the bridge, because yesterday found me and my seven year old Ashlynn finally at the neurologist.  I actually would have went sooner, but our insurance sucks!  I knew going to a neuro would mean a recommended MRI at least, and our insurance comes with the lovely 80/20 policy and a deductible of 5K anyway before that kicks in, so I had to be willing to pay of out pocket basically for her MRI which I wasn’t willing to do.  We have her in all the right therapies, I would wait when maybe my insurance would get better.  This past year I switched the kids to my insurance plan.  It still has a high deductible, but is more manageable and at least offers 20 visits of speech and OT a year, so it’s now or never.

    Ashlynn’s “ballerina toes”

    The appointment itself was good.  She took our case history, and did an exam on Ashlynn.  She was a lovely
     person who commented how she could not detect any heel cord or tight calves now, what a great and friendly personality Ashlynn has, and when she watched Ashlynn run, commented on how good it looks considering all of her motor planning issues.  I was so proud.  I told her Ashlynn works hard and gross motor skills are the area in which Ashlynn is seeing the most progress.    I added that the school PT said she will probably meet all of her goals and be within the average range within the next year.

    She was a resident, so she went to get her supervisor for the final conclusions and recommendations.  The supervisor came in and examined everything she missed.  I felt bad because in five minutes this woman identified an under-active gag reflex, oral apraxia, and verbal apraxia (based on a measure called the diadochokinetic rate).  She didn’t say this aloud, but I knew as an SLP that was what she was examining.  They recommended a Tier 1 level of tests first which include an MRI and genetic micro-array testing.  I nodded my head.  It’s what I was expecting.  I know many, many kids now in the apraxia world and this is the next step.  We want to see if there is an actual cause we can pinpoint for all the motor planning issues.

    Then, this.

    “We would classify her at this point as a developmental delay (insert loss of breath.  Loss of breath even though I KNOW she has this, it’s just so hard to hear) and that she’s functioning right now around a 4 year old level.”

    I just stared back at them.  I was thinking, what on Earth did they do to just decide she’s functioning at a 4 year old level?  They heard her talk, ok.  They have my case history, ok.  I wouldn’t put her at a 4 year old level based on that.

    “Does that sound about right?”

    I kept staring.  Her dressing skills.  They asked me in detail about her personal care, adaptive skills we call them, and, oh yes.  Yes.  She can’t brush her teeth independently, still can’t spit, can get dressed independently but usually has things on backward or on the wrong feet……the adaptive skills is what gave them this conclusion….

    “Ms. Smith?  Does that sound about right?”

    I nodded my head.  I couldn’t get any words out.  It felt cruel.  It’s not their fault, it is just the way these appointments are.  I thought of Ashlynn’s four year old brother on the way out.  He can get dressed independently, brush his teeth independently, spit, can almost shower by himself…..punch in the gut.

    I looked over at Ashlynn holding my head walking out of the hospital.  She was smiling holding my hand, and holding a notebook and pens in the other hand.  Always working that girl.  ALWAYS.  During the appointment she “took notes” for the doctor and gave them to her at the end.  The doctor who smiled and was nice to her believes she’s functioning 3 years under her actual age level.  Similar to the day she was dx with CAS and Ashlynn smiled at me and said the one word she could, “hi,” she remains happy and with a positive attitude.  I wanted to cry, but I won’t.  That’s not to say I’m against crying.  It’s just to say it’s not how I want to process it all.  I will write it all out and when Ashlynn looks at me I will smile because that is what she deserves.

    I turned on “The Fighter” by Gym Class Heroes.

    “Just waking up in the morning
    And the be well
    Quite honest with ya,
    I ain’t really sleep well
    Ya ever feel like your train of thought’s been derailed?
    That’s when you press on Lee nails
    Half the population’s just waitin’ to see me fail
    Yeah right, you’re better off trying to freeze hell
    Some of us do it for the females
    And others do it for the retails

    But I do it for the kids, life through the tower head on
    Every time you fall it’s only making your chin strong
    And I be in the corner like mick, baby, til the end
    Or when you hear this song from that big lady”
    One last thought.  My dad has never been a dreamer and he certainly did not encourage us to dream.  He encouraged us to work, stay out of debt, and have a plan B.  He’s a practical man.  I think maybe at one time he did have dreams, but they were crushed slowly until they were snuffed out.  Between Vietnam and then coming back with no college degree and no credit, he was a blue collar worker his entire life.   That’s why it was surprising the other day when my mom called me and said,
    “Dad wants to know if you know what Ashlynn’s name means?”  Seems like something I would know.  I didn’t know though.
    “No, what?”
    “To Dream,” she responded.
    We both paused.
    “Wow” I managed.  “Dad told you to tell me that?”
    “Yes.”
    I was silent.  Honestly it was hard to process.
    “He told me the other day too, Laura, he believes Ashlynn will be a miracle.”
    Silence.
    “Wow” I managed again.
    So Ashlynn, one day when you are reading this, I want you to remember that Christ once told us in Matthew 17:20 “And he saith unto them, Because of your little faith: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.”
    So work baby girl, and I’ll work alongside you;  but most importantly DREAM and BELIEVE and your entire family will be here dreaming and believing alongside of you.
    My dad with four of his grandchildren including Ashlynn
    To read more from SLPMommyofApraxia follow her on facebook, pinterest, or twitter.
  • The problem with school SLP’s.

    The problem with school SLP’s.

    I only realized after being a part of the special needs community that school SLP’s have a bad rap.  Like a really, REALLY, REALLY bad rap.  

    I’m preparing a talk next month for Colorado school SLP’s, and every time I prepare a talk for this demographic, I have to tell you they have a special place in my heart.  No, it’s not just because I started as one and work as one part time, but it’s because I have literally worked under, with, and around many, many, MANY of them. I have worked with so many of them, and I can tell you they are a jack of all trades.  They are the EXPERT in eclectic, and may be the ONLY person in the school who understand in depthly just how a student’s unique communication challenges actually affect them in school.

    In the schools, you don’t have the option to specialize.  Kids from every disability show up on your caseload and you are expected to be the expert.  It might be hard to understand as a parent, but there are soooo many different disabilities and speech and language disorders, and a parent (rightly so) expects the SLP to do right and best for their baby.

    Every single SLP I know and have met has a desire in their heart to help children.  Please, let that sink in.

    When I took Ashlynn to her first private SLP who had never worked in the schools she was asking me about qualification.  She asserted that she could never be a school SLP because she felt it was unethical to not qualify students who clearly had some sort of speech or language problem.  I had a hard time refuting her.  Aside from saying qualification is different in the private versus educational sector, I really had no excuse.  I know that funding is limited in the public sector so that obviously plays a part in qualification.  I also know if every SLP took her stance, than NO kids would be serviced in the public schools, and is that really what we are going for?

    Public school SLP’s have caseloads that are probably double if not more of the private SLP.

    Where the private SLP can see kids 1:1, school SLP’s rarely have that luxury.  With weekly caseload averages around 45 to 55 and some maxing out at 90 (Yes 90 people I’ve seen it), even the most skilled SLP will not be able to do what a private SLP can do 1:1 for 45 minutes (though they will kill themselves trying).

    The result?  Parents become outraged at the lack of progress or progress they feel the child should be making. They surmise the school SLP just isn’t as good as the private SLP and they become disillusioned and write them off.  They post memes about preparing for battle when going into an IEP meeting! This honestly breaks my heart.  I feel bad for the parent who feels the SLP doesn’t care, and I feel bad for the SLP who is trying to manage an unmanageable caseload, writing IEP’s at night, or staying up until 2 Am (true story from an SLP I just talked to last week) to write a lesson plan, only to be ravaged by a parent unsatisfied with the results.

    I’m not sure if everyone is aware of this, but ANY SLP in ANY setting is as qualified as the next SLP by basic certification standards.  What does that mean?  That means, as long as an SLP received their masters degree and the Certificate of Clinical Competence (CCC) through ASHA they can work anywhere.  So that means, your school SLP can apply for a job at Children’s Hospital right now and probably get hired tomorrow (because in case you didn’t know there is an SLP shortage as well).  For some reason though, there is this perception that the school SLP just isn’t as good as the private SLP.  If it’s true, it probably has MORE to do with caseload and workload size than it actually has to do with the qualification of the SLP.

    I get calls and emails all the time from concerned school SLP’s desperate to meet the needs of their kids with apraxia but not knowing how.  They want to see the kid more, or see the child 1:1, but their caseload simply does not allow for it.  They cannot add more hours to the day, yet they still call, or write and wonder if there is something they have not yet thought of.  Oh, and here’s a dirty secret.  Listen close.

    Are you listening because this is VERY important.

    If an SLP feels in their heart a child needs private, supplemental speech services, they CANNOT say it.  People, they CANNOT tell you this.  Why?  Well, their license and job is on the line.  In most cases, school SLP’s are told not to recommend any sort of outside therapy.  Why do you ask? Why?

    I’ll tell you.  If a school SLP recommends outside services, the parent can sue the district and win, and potentially disbar an SLP from ever practicing again.  Are you asking why again?  I’ll tell you.  If a school SLP recommends outside services, they are essentially saying that the child can not benefit or make progress from the therapies provided by the school, and the school is required by law to show progress.  If the SLP recommends outside service thereby saying the school is inadequate, the school gets worried or they will get sued for not providing adequate services and the SLP potentially fired.

    Would you take that risk?

    I’m not saying unilaterally every school district would do this, I’m just saying, school SLP’s are told this is a possibility, and so they would find it best not to recommend outside services.

    You need to know this as a parent of a child with any disability.  Some SLP’s will risk their professional license and recommend this to you.  Let me  tell you though what they are risking.  They are risking 4 years of a bachelor degree, 2 years of a masters degree, 1 year of a clinical fellowship, and the usually 3 years of probationary status as a teacher.  That is an entire decade of work and dedication to a profession they love and believe in.  Would you take the risk then to recommend a parent pursue outside therapy?  This is where they are at!  It is truly a catch 22.

    If you are upset about your school services, you probably have every right to be!  I was VERY unhappy with Ashlynn’s preschool, in-class only, speech/language services.  However, it is important to place the blame on the right entity and in most cases I can assure you it is NOT on the school SLP’s shoulders.  In Colorado, the Colorado Department of Education mandated an inclusion model only of special education services in preschool thus making it extremely difficult for any school SLP to pull a student out into a 1:1 session.

    My message today is this: School SLP’s are some of the most phenomenal group of people I ever have the honor to speak with or to. They do not get the option to specialize, and so they pursue advanced training and expertise in every disability that may affect communication: from Apraxia to Angelman’s Syndrome, from Developmental Delay to Down Syndrome, from Cerebral Palsy to Stuttering, from Language Impairment to Nonverbal Learning Disability, from Assistive Technology to Autism, from Auditory Processing Disorder to Articulation Disorder,  school SLP’s will see it all and be expected to rise to the challenge.  They cannot “refer out” or “discharge for lack of progress” as an can be done in private speech. No, the school SLP is expected to figure it out regardless of the lack of resources, lack of funding, or lack of time.

    They will be faced with limited or no space, they will be strapped with high caseloads, and criticized by parents; yet they will persist and pursue only becoming better for it, because of their love for the children and the profession.  I personally have witnessed it time, and time, and time again!

    I can tell you firsthand, getting into graduate school for speech/language pathology is VERY difficult.  It is highly competitive, and here in Colorado, the average COLLEGE GPA was a minimum of 3.87 when I applied.  I found this graphic from 2011 but I can tell you things have not changed much.  There is a HUGE gap between the number of applicants and the number of people selected. 

    The disparity should be striking, and please remember that MANY of these applicants will be YOUR school based SLP.  If you have the mentality that “C’s get degrees” and you are certain your school based SLP fits the latter, let me correct you.  NO average C students make it to graduate school in the first place for speech/language pathology.

    Truth

    For my final thoughts I wish not to be adversarial.  I hope that this article has persuaded you, a parent OR SLP, to reach out to the other side and bring about the change you wish to see.  I have the unique perspective of being on both sides, and as such, I have the utmost RESPECT and LOVE for both sides.  I truly wish for there to be a conduit of communication, and not a  ridge of animosity and distrust; and at the the forefront, I wish to impart a spirit of solidarity between my professional and special needs relationships.

    To read more from SLPMommyofApraxia follow her on facebook, pinterest, or twitter.

     

     

     

     

     

     

     

     

     

     

  • When you can talk but have no words

    When you can talk but have no words

    If you are familiar at all with apraxia of speech, then this meme makes perfect sense to you. Most kids with apraxia, especially in the early stages cannot communicate what they are thinking because they cannot talk or make the sounds make sense.

    (Not) fun fact: Some kids (I don’t know the percentage offhand), will also have an additional language processing disorder with the apraxia.  This adds another layer of complexity and makes it more difficult for kids to express themselves with language even if they can actually articulate all the sounds correctly.

    Such is the case with Ashlynn.   Now, to be clear, Ashlynn can  talk my ear off.  She talks so much sometimes I have to tell her to stop talking, like when she has food in her mouth or when we are brushing her teeth!  She speaks in sentences, has long sentences, has question forms, and is gaining new vocabulary words daily.

    The other day, she comes home with this paper:

    Seems normal, except, the only thing correct is her name.  She has never declared a favorite color, she doesn’t eat meatballs, and I’ve never heard of this alleged “favorite book.”

    “Ashlynn,” I asked.  “Why did you say your favorite food was meatballs?”

    “Ugh my brain!” she said as she slapped her forehead.

    “Honey, why would you say meatballs though?”

    She points to a cookie tupperware sitting on the counter.  Over break we had made Christmas cookies called Pecan Drops that are round little balls.  She says, “What are those called?”

    “Pecan drops?” I offer.

    “Yes! Pecan Drops!  Ugh my brain!” she exclaims.  Sigh.  Poor thing.  Can you imagine?  What must that be like?  She knew EXACTLY what she wanted to say, but couldn’t access the word pecan drop and settled on meatball instead.  Someone even wrote it down for her and she just had to go along with it.  This is what always amazes me about Ashlynn.  She like NEVER gets frustrated.  How is that?  Wouldn’t that be frustrating?  She was just happy she could spit out a word and complete the activity.  She didn’t care they didn’t know she was trying to say pecan drops.

    I look down the list.  What book is this?  We’ve never read this book?  Is this really your favorite book?

    “No,” she laughed.

    I looked at my husband and told him maybe one day one of these about me papers will be accurate.

    Later that day, I saw a fun game on facebook where parents were asking their kids to answer questions they asked them.  It was to show how much your kids pay attention and really know you.  Questions were things like, what is my favorite food, what makes me happy, etc.

    I asked my four year old and he was funny.  I told my husband to do it with Ashlynn and handed him the questions.  This girl who talks with her mouth full and while she brushes her teeth was reduced to a pantomiming nervous wreck.  I could have cried watching it.  She knows all those answers.  She pays more attention to us than anyone.  She will be the first one to notice a haircut, a new shirt, or change in the decor.

    My husband asks the first question:

    “What is something I say a lot?”

    I KNEW she would get this one.  She tells me what he says all the time.  She tells me “Daddy says he loves me forever.”

    She stood there and looked visibly anxious shuffling her feet from side to side.  We gave her processing time, we didn’t rush her, we were patient, we both asked again phrasing it differently, still nothing.

    “Ask the next one,” I said sure it would be easier.

    “What is something that makes me happy?” Cody questioned. I knew she would have this easy.  She waited a time and then just pointed at herself.  She didn’t even say her name.  It’s true she makes Cody happy, but I couldn’t believe she wasn’t saying the jetski, or his snowboard, or his video games.  Hmm.

    “What makes me sad?” Cody asked as the next question.  She pointed to herself again.  My husband gave a half smile.  “You don’t make me sad Ashlynn,” he said as I sat there feeling that exact feeling.  Sad.  This was so sad.  Where were her words?  When I say and write about crippling word finding, this is what I’m talking about.

    He skipped down.  Ashlynn has been to his work now twice with him for take your kid to work day.  She knows he works on computers.  He asked her if she knew what his job was.  She sat there and started shuffling her feet again.

    He asked the last question, “How much do you love me?” and she put her arms out wide, again with no words. 🙁 🙁 🙁

    Sometimes it’s such a cruel, cruel, cruel disorder.

    Seriously.

  • The angel

    The angel

    Angel

    They told me you were my baby girl
    as you cried hello to us.
    I believed them at the time,
    admidst the chaos and the fuss.
    They told me you were my baby girl
    and when I took you home,
    I would gaze upon the sweetest face
    I had ever yet to know.

    They told me you were my baby girl
    and I would gaze at you at night.
    I would watch your sleeping lips,
    flash smiles radiant and bright.
    They told me you were my baby girl
    but I have so many flaws,
    and you are perfect in every way
    they must have got it wrong.

    They told me you were my baby girl
    and my baby girl you will always be,
    but I know the truth and the truth is….
    God sent an angel to me.

  • The irony of the Chicago Hate Crime

    The irony of the Chicago Hate Crime

    By now, you have probably seen or read about the special needs man who was kidnapped and tortured by 4 other individuals.  Some reports say it was racially motivated, yet others said they targeted a person for being special needs.

    I made myself watch the video.  I got through a fair amount.  I saw this man cower in a corner while he was beat, kicked and punched.  I saw the fear in his eyes.  Oh God his eyes.  I saw them bully him into getting up and going to the bathroom and I saw him get on his knees and drink the water out of the toilet while they laughed.  That’s when I stopped and turned it off.

    Some call it evil.

    To me, it was simply the worst of humanity.  It was a display of everything bad that humans can be, and what’s worse, they had no ounce of shame. Not one drop of shame as they proudly and mockingly recorded it on video.

    I have a special needs child, and I work with special needs children every day and I can resolutely tell you this:

    They represent the BEST of humanity, what is GOOD in humanity.  Their innocence and joy are a display of everything good that humans can be, which is what makes this hate crime so utterly despicable.

    This isn’t the first time this has been on the news.  It made me remember a story I heard of a young man who had autism and his peers dumped human urine and feces on his head, also capturing it on video for presumably bragging rights or some sick form of entertainment.

    I’m sad.  I’m sad and then I get angry, and then I get scared because I’m not sure if Ashlynn would know if she was being bullied yet, and I worry she could fall into some mean trap, and all she’s ever done is “spread her sunshine” as my sister puts it.

    I don’t like seeing the worst of humanity.  Maybe that’s why I surround myself with people whom I feel are the best.  They make me remember the good that’s in people because when you read stories like this you can’t get enough reminders that there IS still good in this world.  It’s easy to get cynical.

    If you are reading this, I ask you to do one thing, make one promise each day when you wake up that today you will choose to be KIND, and if you have children, you will teach them too to just be KIND.

    At the start of each day,  I’m going to start asking my kids to do something kind for someone, and then at night I’m going to ask them what they did that day that was kind.  #choosekindness  and teach your kids to do the same…..because PLEASE remember:

    Kindness is an active endeavor, not a passive one.