SLP Mommy of Apraxia

Tag: Apraxia

  • She observes more than we know.

    It started with the name disintegration at Thanksgiving.  My concerns about her writing were brought up to the staff as she flitted playfully around her preschool room while we talked.  I cried and I made tough decisions.

    She noticed.

    I didn’t know it at first.  It started out innocently with her asking when she would see Dione (her private OT) again.  I told her I had to apply for more funding and then we could see her.  I figured that was the end of it…..but it came up again.

    ” I need to see Dione,” she said again randomly one day.

    Me: “Oh I know honey, I’m still waiting on funding and hopefully we’ll see her soon.”

    Weeks passed.

    Again out of the blue she says one day, “Mommy.  I NEED  to see Dione.”

    Me: “Oh sweetie, I know.  Hopefully soon.  I applied and now I’m just waiting to hear back.”

    Crying.

    “MOMMY!! BUT I NEED TO SEE HER.”

    Me looking confused, “honey, what’s wrong?  why?”

    Ashlynn talking through tears, “because I need to practice my yetters (letters).”

    With my heart breaking in two I give her a hug.  I tell her that her letters are perfect, and that she always works so hard and she has nothing to worry about.

    That got me thinking though.  I am the FIRST one to defend her receptive language, her comprehension.  However, apparently I’m also the first one to talk about heavy things in front of her and just assume she was too busy being a kid to notice.  Not true…..apparently.

    Fast forward a month.  Her dad had a bad day at work.  Nothing catastrophic, but a pretty tough day. I was relaying it to her grandma (her dad’s mom) one day when she dropped her off for me to take Ashlynn to school.  Ashlynn seemingly oblivious, was playing on the curb and sidewalk, jumping down, climbing up, being a kid!

    I took her to class and the kids have to “check in.”  They get their name and place it under a feeling picture.  Ashlynn ALWAYS picks happy.  She is happy!  However, today, she placed it under sad.  “Ashlynn” I say, “you put your name under sad?”

    “Yeah, I sad mommy”  she said.

    “You’re sad??  Why?” I asked.

    “I sad for daddy…for his work,” she said.

    I absolutely folded.  What’s worse, I would have never known she felt sad about what I was telling her grandma if she hadn’t of “checked in” right after that.

    Are typical kids able to express these feelings, or do they just stuff them too?  Stuff situations they don’t understand, or is it because of Ashlynn’s apraxia?  My mom made a good point that Ashlynn would have probably brought it up “out of the blue” eventually like she did her OT and letter concerns.

    Maybe.

    I don’t know.

    All I know, is my child is so much more than you see, what I see, what anyone sees.  A five year old shouldn’t have to worry about needing help for writing, or worry that her daddy had a hard day at work.  It makes me wonder what else she worries about of which I have no idea.

    I love this meme: “Don’t underestimate me because I’m quiet.  I know more than I say, think more than I speak and observe more than you know.”

    I will try to never underestimate you again, Ashlynn.  You were born to move mountains.

    thinks more

  • Strategies to promote speech and language in the pre-verbal or minimally verbal child with Apraxia

    Strategies to promote speech and language in the pre-verbal or minimally verbal child with Apraxia

    The great thing about speech and language, is that it a task that can be worked on in any activity.  Familiar routines in the home provide the perfect platform for encouraging speech and language, because this “routinized language” is predictable and context based.

    A fellow SLP and mommy of apraxia, Kim from Landonjourney.blogspot.com and I teamed up for Part I in my series of parent strategies to promote speech at home.  We wrote a list of some of the most effective strategies to encourage early speech in the pre-verbal child, including those with Childhood Apraxia of Speech (CAS).  Part II in the series will focus on strategies for the verbal child with CAS.

    Parents ask a lot, “How do I get my child to practice speech at home?”  Well, we are here to tell you, you don’t need worksheets and flashcards.  Basically, with kids who are minimally verbal, we look for opportunities to model and encourage functional language.  Functional language refers to language the child is more apt to use frequently throughout their day, or may be highly motivating to them.

    With kids who have apraxia, not only do we think just about functional language, but words that also contain simple syllable structures.    These are some of our favorite strategies and targets and how we incorporate them:

     

    Powerful motivators:

    As moms, Kim and I know that when you have a child who is nonverbal, you anticipate their needs for them.  After all, our babies can’t tell us when they hurt, or where they hurt if they are crying.  They can’t tell us they’re hungry or thirsty; and if they have global apraxia like our kids, they may even have trouble pointing to communicate to us that way.  However, as SLP’s we know that kids need to be motivated to communicate.  If we keep anticipating their needs, they never have a reason to really force themselves to try at something they know is hard for them anyway.   As the parent, you are truly the best person to encourage them to try, even when it’s hard.

    Teach and pair signs with a verbal model:

    Some worry that teaching sign will inhibit speech; however, as long as you make sure to always pair sign with verbal models and give verbal reinforcement after the child uses a sign, sign language can be a powerful bridge to helping the child say it once they begin speaking.

    • “help” “more” “go” and “bye” are good beginning signs to teach. Always provide a verbal model when you sign to your child, but encourage your child to sign, and reinforce any attempt by repeating the word and modeling the sign before giving your child what they want.

    Cloze activities:

    • Cloze activities are great for our kids with CAS because their mouth/body gets ready to respond, and the response is familiar. It reduces cognitive allocation and helps get the motor plan “set.” We do cloze for everything.
      • “Turn the music (pause) ” on, and wait for “on.”
      • “Ready, set (pause)” go!  We do “go” at every green light and I start the sentence and he tries to finish it. This has helped him feel more success at speaking “on command.”
      • “One, two _____” three!
      • Sing nursery rhymes and pause before the last word.  Ashlynn and I would sing “The Itsy Bitsy Spider” and “The Wheels on the Bus” and I would pause before some words that had simpler syllable structures.  For example “down came the rain and washed the spider (pause) out.” or “The wheels on the (pause) bus go round and round.”
      • Read repetitive story books, pausing before the predictable repetitive words.  To read more about repetitive books and to get a free download on how to use them visit my on repetitive books that are great for apraxia.

        • Keep reading for more cloze ideas. 

    Require your child to respond to your yes/no questions:

    • assessing your child’s understanding (i.e. Do you want to go outside?) can often be done with simple yes/no questions before your child is verbally able to respond more.
      • I require my child to answer yes/no questions in anyway he can. Before he could nod/shake his head (difficult for motor planning), I modeled the response based on how I knew he reacted.  Do you want help? (giggle giggle). Yes (nodding my head), I want help. I had to physically move his head before he was able to do this. Now, I will say “yes” or “no” and wait.  This has also helped my son to be able to say yes/no, and they are words we have targeted often. 

    Focus on functional words:

                (These are some of our favorites, but individualize them for your child!)

    1. Bye-bye

                * Bye bye is good because it can also signal the end to an activity if the child cannot say “more.” We say bye to each activity, place, and even to our toys at bedtime.  This works on the motor planning for waving, and then saying bye bye.

    1. In

                * Emphasize each time you put them in: bed, the bath, car-seat, highchair, stroller, park swing.

    * Model when pouring a drink in their cup etc.

    1. Out

                * Emphasize each time you take them out of: crib, bath, car-seat, highchair, stroller, park swing

    * In the kitchen, model each time you take food out of a container, the fridge, a cupboard.

    * In the bathroom, model when squeezing out: toothpaste, shampoo, tissue, diaper wipes, etc.

    1. On

    * Emphasize each time you put music on, water on, lights on.

    * In the bath, “ok let’s turn the water (pause) on.

    1. Down

    * Emphasize when going down the stairs, getting them down from highchair, putting them down,                                       when something falls down, playing “Ring Around the Rosie,” etc.

    * Use a cloze procedure here too, “uh oh! The cup fell (pause) down.” Or “We all fall (pause)                                                down.”

    Again, these are some of our favorites, but work with your SLP to determine your own that work for your child.  Other suggestions:

    Uh oh

    Hi

    Nigh-Night

    More (Mo)

    Child’s age

    Mama

    Dada

    Put

    Done

    Do

    Set activities to song:

    • Based off of research done with melodic intonation therapy, music can provide a bridge to stimulate language.
    • Have fun and make up your own silly songs set to melodies you already know, to make it easy.
      • During bath time, I would sing a body parts song to Ashlynn set to the tune of “Mary Had a Little Lamb”:
        • “Now we’re washing Ashlynn’s hands, Ashlynn’s hands, Ashlynn’s hands, Now we’re washing Ashlynn’s hands while we are taking a bath.”  You can use a cloze procedure here too: “while we are taking a (pause) bath.” 
    • To get on demand phonation, something that is hard for our kiddos,  set songs to Row, Row your Boat and change it to:
      • Row, row, row your boat, gently down the stream, if you see your feet, don’t forget to scream. For my son, this song works to assess areas that he often can’t tell me/show me on command, but in a song, he gets his body ready and is more interested/able to do so.

     Repeat and reinforce spontaneous utterances.  

    • If your child says a sound or word, try to say it back at them and encourage them to say it again.  On demand speech is hard for our kids, so getting them to imitate back to you might be easier when you first imitate something they just said.
      • Ashlynn had a “go to” sound “a dah” that she said for everything.  I would tell her, “a dah?  dah dah, dah, dah” and see if I could get her to say it again on demand.  If she did, then I would change the vowel and see if I could get that on demand, “a dee, dee, dee, dee.”  Play around with sounds and have fun with your child.  This should be a low stress activity and just seem like fun to your child.

    Praise and Encourage ALL communicative attempts           

    • Our kids know talking is hard. A little bit of praise goes a long way!

    Laura Smith M.A. CCC-SLP is a speech/language pathologist in the Denver Metro Area specializing in Childhood Apraxia of Speech.  CASANA recognized for advanced training and expertise in Childhood Apraxia of Speech, she splits her time between the public schools and the private sector.  She is dedicated to spreading CAS awareness.  Her passion is fueled by all of her clients, but especially her own daughter who was diagnosed with Childhood Apraxia of Speech.  For more information visit SLPMommyofApraxia.com  

    Kimberly Haas-McEneny M.S. CCC-SLP, mom to two boys: one with CAS and the other with suspected CAS.  Kim is a Bilingual SLP practicing in Syracuse, NY at the Syracuse City School District. She blogs about her experiences with being both a mom and SLP at landonjourney.blogspot.com

    Parent strategies

     

  • What exactly is CAS?

    What is Childhood Apraxia of Speech?

    Definition and characteristics

    Childhood Apraxia of Speech is a speech disorder that results from difficulty with programming, planning and sequencing the precise movements needed for clear speech.

    The American Speech/Language Hearing Association (ASHA), denotes three main characteristics that must be present for a diagnosis of CAS.

    • Inconsistent production on consonant and/or vowels in repeated productions of syllables and words.
      • An example of the word doggy for my daughter who has apraxia ended up being produced doddy, do-yee, daddy, da-yee.
    • Difficulty sequencing syllables and words of increasing complexity.
      • The child might be able to say “dada,” but when words or added like “my dada” the child might say ‘da-da-da.’
    • Errors with prosody
      • Prosody can include syllable stress, and kids with CAS might stress the first syllable in each word: BAnana instead of baNAna or may give equal stress to every syllable BA-NA-NA.
      • Can include difficulty with volume control.  This was definitely true with my daughter.  She could not be loud even when she tried in her younger toddler years.
      • May have prolonged sounds and prolonged pauses, possibly giving the child ad staccato sound to their voice

    Other soft signs that should be considered include:

    Speech

    • Vowel errors and/or reduced vowel inventory
      • May have a tendency to reduce vowels to the schwa (uh).  For example, buh-buh/bye bye.
    • Groping
      • The child’s mouth seems to make a lot of unnecessary movements while they “grope” for the correct placement
    • Loss of words or sounds that were previously produced
    • Consonant omissions in the initial position of words
    • May be more successful with automatic versus volitional speech
      • A child may say “mama” but then when asked to repeat “mah” may be unable to do so correctly
    • Limited babbling as a baby, or limited sound variation in their babbling
    • Typically comprehends much more than they can speak

     Non-speech

    • Oral apraxia (difficulty planning and executing non-speech oral motor movements
      • May have trouble blowing raspberries, puckering, sucking out of straw or blowing out a candle
    • General awkwardness or clumsiness
    • Limb apraxia
    • Low muscle tone

    Who diagnoses Childhood Apraxia of Speech?

    According to ASHA, a qualified Speech/Language Pathologist is the IDEAL professional to diagnose CAS.  However, diagnosis can be tricky, so you want to make sure you find an SLP who has experience and/or specializes in CAS.  Currently, CAS is both over-diagnosed and under-diagnosed, so don’t be afraid to ask questions to gauge your SLP’s experience and knowledge of it.  A good SLP will not mind being asked questions about their experience with CAS or answering questions related to it.

    The Childhood Apraxia of Speech Association of North America provides an advanced training for SLP’s who already have extensive experience in the disorder called the Childhood Apraxia of Speech Intensive Institute.   You can read more about my boot-camp experience here:

    What should therapy for CAS look like?

    There are many programs out there that say they are geared toward the treatment of CAS.  There is a growing body of evidence that the principles of motor learning affect the most change.  In short, you should be seeing:

    •    frequent repetitions of target sounds or words (mass practice)
    •    feedback that is specific.  The SLP should be giving them feedback such as “you’re lips were open, not closed,” rather than just “good job” “try again” or “that was great.”
    •    carefully chosen speech targets that take into account the child’s current phonetic repertoire and then practicing a variety of movement gestures (sound to sound, syllable to syllable, word to word) with these sounds.
    •    Cues – can be visual (SLP may pop her hand out for /p/) verbal (close your lips and use your humming sound), or tactile (SLP may use physical touch cues on the child like in PROMPT).

    For a great description on what parents should look for in CAS treatment, see my interview the executive director and founder of apraxia-kids.org Sharon Gretz.

     

    For a detailed description of DTTC, a therapy approach for apraxia, see my interview with Dr. Ruth Stoeckel from the Mayo Clinic.

     

    A note about the school-age population

    Since I have spent most of my 10 year career in the schools, I think it’s important to also address some symptoms SLP’s may see that vary slightly from toddler presentations.

    By the time a child with CAS reaches Kindergarten, an SLP may run into three scenarios:

    • The child who has almost resolved due to intense and appropriate early intervention
    • The child who is still struggling significantly with motor planning, and is very unintelligible.
    • The child is still essentially non-verbal

    In scenario one, a child’s speech may be highly intelligible, with only residual articulation errors evident like a lisp, or an /r/ distortion of substitution.  It’s important to review the file closely and see what prompted the initial diagnosis of CAS.  This is important, because children may have additional issues after the CAS is resolved.  With one particular 4th grader, his speech only contained persistent errors with three speech sounds; however, his sentence formulation, grammar and syntax remained very problematic.  What is syntax?  One element is to correctly sequence the words in a sentence.  If a child had difficulty with the planning and sequencing of sounds, it ‘s not far off to think he/she may also have difficulty sequencing words correctly in a sentence.  I treated him differently and used the principles of motor learning to guide his treatment, unlike my other kids with an expressive language delay that never had an apraxia diagnosis.

    Other issues may include: pragmatics, narrative language, and persistent prosodic errors.

    In scenario two, a child may be speaking but is highly unintelligible.  By this age, they might actually have a vast repertoire of sounds, and actually be able to produce most sounds correctly in isolation.  One year I had a five year old walk through my school door.  One day he took out an alphabet BINGO and proceeded to name all the letters and letter sounds correctly in isolation.  However, this kid could not string two sounds together or consistently.

    In scenario three, the child may still be essentially nonverbal.  Until the child can commit to a motor speech exam, meaning he can or will at least attempt to imitate a variety of sounds and movement gestures, a definitive diagnosis cannot yet be made.  Aside from using Assistive Technology which can eventually facilitate speech, I would recommend starting with a functional core vocabulary book you two can make together that includes highly motivating syllables or words the child can work toward using sounds in his current repertoire.  With one five year old I had, he could only produce bilabials (b,p,m) and and /n/.  We started with word and word approximations to help him be more successful:  i.e. 1. no 2. bah/ball 3. mah-mah/mama etc.  Then we drilled them using the principles of motor learning that included massive amounts of repetition, involving visual and verbal cues, using specific feedback.

     

    CAS is a complicated disorder that is many times over-diagnosed and under-diagnosed.  In addition, the treatment approach varies from other traditional speech sound disorders.

    For resources I recommend the apraxia-kids.org webiste.  There is a wealth of information for parents and professionals.

    To find  CASANA certified SLP’s see the professional friends directory on the apraxia-kids webiste.

    Laura Smith is a speech/language pathologist in the Denver Metro Area specializing in Childhood Apraxia of Speech.  CASANA recognized for advanced training and expertise in Childhood Apraxia of Speech, she splits her time between the public schools and the private sector.  She is dedicated to spreading CAS awareness.  Her passion is fueled by all of her clients, but especially her own daughter who was diagnosed with Childhood Apraxia of Speech.  For more information visit SLPMommyofApraxia.com

    CAS

     

     

     

     

  • There are no easy answers, only tough choices

    There are no easy answers, only tough choices

    image5-300x225

    I didn’t expect to cry today,  yet that’s how the cards fell.  I dropped Ashlynn off at school today, and asked her teacher if she had talked to the OT about changing her name card to all capitals per the private OT recommendation given in my last post .  Her face kinda dropped and she said she had talked to the OT, but she wanted to talk to the SPED teacher first, could we talk after school?

    Oh sure, I said.  Inside though, I felt that pit in my stomach.  They don’t agree with that.  I guess I’ll find out why in a couple of hours.

    I went back to school and the SPED teacher, teacher, and SLP were there.  The SLP kinda accidentally walked in, but I had her stay.  So basically in a nutshell, there are two theoretical professional recommendations for this issue.  The SPED and classroom teacher both have research to show that kids need to be writing their name in both upper and lower case because that will be the automatic expectation when they go to Kindergarten.  At a recent conference, the teacher said the one of the speakers pleaded that if they are still focusing on uppercase, to please at least expose them to lowercase because lowercase letters are what they will predominantly see in literacy.

    The OT’s position (and I ran this past the school OT too who agreed with my private OT) is that developmentally, uppercase letter formation comes before lowercase.  Basically, uppercase letters contain more pre-writing strokes like basic horizontal, vertical and diagonal straight lines that are still hard for Ashlynn to visually interpret and copy correctly.  It’s a problem with the praxis, or motor plan, not a problem with her perception.  So for example if she sees an M she can point to an M not a W, but when she goes to write it, it looks completely messed up.

    Hmm.  Sounds familiar.  Sounds like speech apraxia.  She understands what people say. She understands correct and incorrect production, but when she goes to say it, it’s all messed up.  Apraxia.  Yup.  Nothing new there.

    Back to the situation though.  The SLP voiced what I was thinking  She sees writing and literacy almost as two separate entities.  Why can’t she write in uppercase but still be taught and exposed to both?

    Well, they felt that writing reinforces reading and vice versa.

    Okay, but my kid could write her name almost legibly last Thanksgiving, and this Thanksgiving she can’t write it all. Her motor plan is completely confused. Don’t you guys see how concerning that must be to me?

    But we’ve gone half the year doing it this way, the teacher said.  I keep thinking it’s going to click.

    SPED teacher: Yes and again, don’t you want her to practice this early so she gets extra time with these skills?  She needs to be writing two sentences with correct punctuation, which includes capitalizing the first letter….by the end of Kindergarten.

    Insert lump in throat. I can’t talk.

    We just want to get her ready for Kindergarten.  That’s our job.

    Me: Lump still in throat.  “So, I’ve been told by experts in writing development that they must learn uppercase before lowercase.  I have personally seen the regression in writing her name.  I’m not talking about literacy.  I’m talking about writing, and, do you think, I mean, I hate to say this but

    this is hard for me to even say but

    Is it really realistic to think that Ashlynn will be able to learn 52 graphemes by the time she hits Kindergarten when it took her a year to consistently write 5, and now those are gone?

    Silence

    It kills me to say this.  I WANT to say that by having THREE years in Pre-K she would be Kindergarten ready, and now I have to say, out loud to you all, that writing both uppercase and lowercase letters is just not in the cards for her right now.  I hear your research and I appreciate it, but my daughter has GLOBAL apraxia.  Have any of you actually had a child with global apraxia?

    Crying. Nope, not one of them had.  Neither had I, until now.  Ashlynn is our guinea pig, but she’s MY daughter.  What do I do?

    The teacher folded slightly and said she was willing to do whatever I decided, but she did want it to be consistent across disciplines so that she gets the most bang for her buck.  We all kinda left with a question mark and promise to consult with various professionals and come back with our recommendations.

    I left and cried again.

    Such is my journey in GLOBAL apraxia.  When I asked them if they had ever had a student with global apraxia, they all had to admit they hadn’t.  I started thinking. I hadn’t either, except recently.  One out of my 6 kids with apraxia have it globally.  Most have other soft signs, but only one has it everywhere. The three I saw in the schools before Ashlynn only had verbal and some fine motor issues.

    Wow.  I guess since I’m part of a support group online, I don’t see it as rare as it really is.  This is rare.

    REALLY, REALLY RARE.

    Sucks.

    I spent the last 2 plus years thinking if we could resolve the speech, she would be ready for Kindergarten.  I’ve read many books.  Speaking of Apraxia is a popular book, but yeah…only dealing with CAS and SPD. Not global apraxia.

    My daughter fits into two columns: her can do’s, and her cannot’s.  My husband usually lives in the can do’s, and I live in the cannot’s.  Why?  I guess because I feel so crazy responsible for getting her from the cannot to the can, but then when I get to the can, I immediately give a sigh of relief and then go back to the cannot column to work on the next goal.

    It sucks, and today was low.  I had to admit out loud that I can’t remediate the cannot column, because that column contains more than speech.  It’s just too much.  To be honest, the speech was too much too, it’s just that I felt such responsibility and I went on an exhausting mission to specialize in it. However, I can’t specialize in it all.

    I’m vulnerable now.  I have to be a mom now, and I tell people all the time mom’s are the expert on their child, despite all the experts on the various disorders their child might have.  So, I’m taking my own advice, and it’s scary, because what if my decision negatively impacts her entire academic career.

    But, here we are.  Here we are, and I have decided, and I’ve felt all along, the experts in writing, the OT’s, know what they are talking about when it comes to writing, and Ashlynn needs to stick to upper case for writing.

    That said, she will continue to be exposed to both uppercase and lowercase letters, but to write…we have to stick with uppercase.

    I wish there was a cookbook.  Heck, I wish there was some credible info on GLOBAL apraxia.

    For now though, I have to trust my mommy instinct, and my mommy instinct say that although I wish to God…I would wish my life on this Earth that Ashlynn could learn like the other students and handle both upper and lower case; deep down, I know she can’t.  At least not yet.  I know I have to just stick with the uppercase until mastery, and then when she masters it, we’ll cross the lower case bridge when we get there.

    No one said life would be easy, only that it would be worth it, and she is worth it.  There are no easy answers, only tough choices, and today was very hard.

  • Christmas note for Santa’s lap

    Christmas note for Santa’s lap

     

     

     

     

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    When I had Ashlynn, I definitely never thought she wouldn’t be able to talk to Santa and tell him what she wants for Christmas, and I’m sure other parents of kids who are/were nonverbal have felt the same way.  A parent friend of mine made these cards for kiddos who want to talk to Santa, but who can’t yet use their own voice.  Thanks so much to Shelley for sharing with all of us!

     

    CAS Christmas Note

     

  • What is your future like when you have GLOBAL apraxia?

    My friend Kim, (a fellow apraxia mom and SLP) and I talk a lot about how most people, including professionals and pediatricians, just have NOT SEEN global apraxia.  What is global apraxia?

    Well, it’s not an official diagnosis.  You’re not going to find it in the DSM 5, and when you google it, you’re not going to find some great scholarly articles.  Nope.

    Instead, you can google Childhood Apraxia of Speech and get some great information now on verbal apraxia thanks to CASANA of apraxia-kids.org.  Members of their advisory panel were critical in the recognition of the actual disorder from ASHA (The American Speech/Language Hearing Association).

    Google oral apraxia, and a lot of information comes up for verbal apraxia, even though they are two very different things.

    Oral apraxia refers to difficulty coordinating non speech oral movements.  These include: sucking, blowing, puckering, lip rounding, etc. whereas Childhood Apraxia of Speech refers to difficulty planning the precise movements for speech.

    Google  plain old “apraxia” and the first two references are to apraxia-kids and ASHA, both referencing Childhood Apraxia of Speech.

    The third entry is from Wikipedia, which references acquired apraxia of speech only.  This is for adults with brain insults for the record.

    The fourth result is from WebMD which does acknowledge it as a developmental disorder as well, but says “typically, it is found in adults.”

    Google “dyspraxia” and the first entry form ncld.org indicates “people with dyspraxia have trouble planning and completing fine motor tasks.”

    Okay, so she now has: Childhood Apraxia of Speech aka verbal apraxia, oral apraxia, and dyspraxia.

    Hmm…but she also has trouble with motor planning gross motor movements as well.  So what label is that?  Oh, and she also has trouble with visual motor planning as well.  So….what label is that?!?

    So let’s see here.  According to a lot of testing, my sweet little Ashlynn has motor planning difficulties in these areas:

    Verbal, Oral, Fine Motor, Gross Motor, and Visual Motor skills.

    Does a human have any other motor planning skills?  Right now as I type this, I can’t think of any and it makes me so sad.  How does that sweet baby with normal cognition, have motor planning deficits in literally every part of her little body?

    That my friends is why there is the term “global apraxia.”

    You’re not going to find it with a search from google.  You’re not going to find it in a scholarly article, but if you do I implore you to email it to me because I have looked!!

    You’re not going to find the term global apraxia in the Childhood Apraxia of Speech research, or the developmental motor planning research, on the dyspraxia websites, or searching under the term developmental coordination disorder.  I think this is because the research is already so lacking in these specific areas, that we are still a ways away from collectively combining all these separate disorders into diagnosing one “global apraxia.”

    However, if you have a child with motor planning deficits in ALL of these areas, I don’t have to tell you, the term “global apraxia” makes absolute, unequivocal sense.

    Can you imagine??  A pure definition of apraxia according to medicinenet.com is simply,

    “The inability to execute a normal, voluntary motor movement despite being able to demonstrate normal muscle function.”

    So as my friend Kim, another SLP put it: her son is essentially trapped inside his body.  How awful is that?  They know what they WANT their body to do.  They see peers or younger siblings executing the same things seemingly effortlessly…..and there they stand. Knowing what they need to do.  Knowing what they are ASKED to do.  Knowing what they WANT to do, but unable to do so.

    It’s almost like being paralyzed, except everyone knows you’re not; so they expect you to do things you simply cannot do.

    How does a sweet child respond to that situation?  How would you respond?  You can’t  tell someone you can’t do it, yet they see you as any other child.  Normal muscle function, seemingly normal cognition….

    I ask you again.  How would you respond??

    I can tell you how my daughter responded.  She would laugh and act cute.  Dang she is so socially competent.  It worked.  Sure they thought her receptive language skills were low and she didn’t understand what they were saying (read into this low cognition aka mentally retarded), but at least it gave her a pass.  Other times she just acted like she didn’t hear them. She still does that.  Oh…”attention problems” they say.

    I ask you again though!  How would you respond when adults think you can do something, demand you to do things,  that you cannot do?! Oh and remember, you can’t TELL them you can’t…because,  well,  motor planning has got your tongue.

    I can tell you about my friend Kim’s son.  He hangs by the door.  He tries to escape!  Poor baby is so smart!! Does the staff see that though?  Not really.  They see behavior problems.

    I’m also not trying to down professionals.  Look.  I get it.  Apraxia of anything is RARE, much less apraxia of EVERYTHING.

    I’m an SLP too.  Before Ashlynn, would I have been one of the misguided staff?!?

    This leads me to my question though.  What is a future like for global apraxia? I honestly don’t know.

    I know that my husband is right when he says my daughter always conquers all the mountains.  She does.  But is conquering the mountain the same as owning the mountain?  Will she have a skill, a gift, or something else?

    Things were so cut and dry for me.  I was good at English not at Math.  I was a great speller and poor mathematician. I was athletically inclined and was naturally good at basketball.  What about Ashlynn?  What will she have?

    I know already she has this incredible ability to unite people, to make people happy.  Everywhere she goes, despite when she was nonverbal or now verbal, people engage her.  They are drawn to her.  She is kind.  She is accepting.  She is sweet to a fault. She doesn’t see bullying, she sees hurting. She is naturally inclusive.  She makes people feel good about themselves.

    These things make me incredibly  proud.  But can I tell you a secret?  I’m scared to death these “strengths” will kill her inside.  Society is cruel.  Kids are cruel.  Will this be enough to carry her through?

    I want her to feel proud of herself.  I want her to feel and to know there is something she is amazing at.  I want her to know I am always and forever will be proud her…but I want her to feel that for herself.

    I already know she’s resilient.  I already know she’ll overcome her obstacles.  At what price though?  What will she be interested in?  What will her passion be?  Right now, I don’t know those answers, but I know this one.

    Whatever her passion is, I will do everything in my power to support it.  When she wants something…like to talk…she will work tirelessly and endlessly, equipped with a positive attitude to make it happen, and I will be right there making it happen with her.

    dyspraxia_chart (1)