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  • Anything but Silent book review and giveaway!

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    I’m continuing on with Day 4 of giveaways leading up to Apraxia Awareness Day on May 14th! Today I am reviewing the book ANYTHING BUT SILENT by Kathy and Kate Hennessy.  Kathy Hennessy is the mother to Kate who has pure CAS and another son Andy who has global apraxia and SPD.

    The book rotates chapters from Kathy’s point of view to Kate’s point of view.  First of all, I just have one piece of advice: if you are a parent or professional

    READ THIS BOOK.

    READ THIS BOOK!

    Yes, people.  It’s that good.  I read it in one night!  I couldn’t put it down.  I laughed, I cried, but mostly I related.

    It starts with the diagnosis:

    “I decided that day I could beat myself up about the unfairness of life or I could educate myself and help my daughter move her own mountains.”

    I could not have said it better.  This is EXACTLY how I felt.  How I feel! Kathy wasn’t kidding either.  She’s now the education director at CASANA (apraxia-kids.org).

    It captures the need for others who are going through the same thing:

    “What I needed at this point in my life, more than anything, was another parent, and that was the one thing I couldn’t find.”

    I can’t even imagine.  My fellow women I have met through facebook are my saviors.  Seriously, I don’t know what I would do without them.

    They capture the fears at simple holiday traditions:

    “When you have someone in your family with childhood apraxia of speech, things that are everyday occurrences for other families are moments for you that aren’t very normal at all.”

    She’s referring to the tradition of seeing Santa.  Kathy would fret and worry that Santa wouldn’t understand them, among other things.  Let me tell you, EVERY mommy of apraxia has been there.

    From fighting insurance companies, to therapy sessions as a lifestyle, these two amazing women tell their incredible story and as Kathy puts it, “Today both kids are doing great and I’m still standing.”

    This story was inspiring beyond my wildest imagination.  I can’t believe I waited this long to read it!  Read it people!!  That’s my review.  You won’t be disappointed!

    To win this book, enter below. Open to U.S. residents only!  Good luck.

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  • Real women are beautiful too

    A departure today from apraxia, but all the talk about the Duchess Kate and how she looked has been eating at me.  What message are we sending?  Why are women everywhere feeling bad about themselves??

    I was eating lunch with my kiddos the other day, and I was scrolling through facebook.  The Duchess Kate just gave birth to a baby girl, and the internet was buzzing about how hours later she was up greeting the public looking fresh as a daisy.

    Mom’s everywhere were apparently gasping, in awe of how amazing she looked after giving birth. Many were feeling bad about themselves and remarking they didn’t look like that.

    I can honestly say I wasn’t jealous of her at all.  How ridiculous!  Duchess Kate doesn’t live real women’s lives.  She obviously had a glam squad.  Sure, I’d look like that too if I had people like that. I wouldn’t have wanted to though.  That’s not reality.  That’s not beauty.  Not to me.

    Beauty is the miracle of childbirth.  Beauty is in the body that grew a life and then birthed it. Beauty should be in the sweat and in the certain smile that only a new baby can give a woman.  I remember my picture after giving birth.  I have no makeup, my hair is disheveled, I’m in pain and I’m wearing a hospital gown, but I am smiling a genuine smile snuggling with my baby.

    My son and daughter,  I want you to see the faces of real women with no glam squad.  Real women who look beautiful with no makeup and no team of beauty experts.  I want you to see these women and think about how you love them.  Their kindness, their laughter, their love, their generosity, their strength, their love for Christ, and remember….. THOSE things are what make a woman beautiful….and REAL.

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  • Interview with “Speaking of Apraxia”

    Interview with “Speaking of Apraxia”

    Hi Leslie!  I’m so happy to have you.  I want to start by asking, what made you decide to write this book?

    Oh, I am happy to be here, Laura.  I won’t pretend that SPEAKING OF APRAXIA was in any way ‘easy,’ but it did sort of present itself to me…in the form of my oldest daughter!  I may have been a first-time mom, but I was also a child/adolescent psych/RN and *knew* something was a little amiss with my Kate’s verbal development.  We didn’t want to admit that our baby wasn’t anything less than perfect; still something niggled in the back of my head when she wasn’t cooing and gurgling like most little babies.  I cringed when others told me of their child’s first words.  Mine pointed and grunted.  My heart broke. When Kate was diagnosed (about 2.6 years of age), I wanted a book.  I’m very bookish – and tangible – I like to be able to hold things and refer to them time and time again.  Websites are great, but they can lead to a spiraling search.  SPEAKING OF APRAXIA is a part of a mother’s mission to help her child, but most of all – I wanted a book, I figured there had to be others out there who wanted – and needed – this resource too.

    You are quick to point out you aren’t an SLP, but did enlist the help of an advisory review board to include the latest research and technical information.  Who was on the board and how long did this take for your research?

    This was one of the more tricky aspects of writing a book about a motor neurological speech disorder for the parent community.  I wanted it to be accessible to parents, but I also wanted to get the information right.  Over the course of writing and researching SPEAKING OF APRAXIA, I had “bumped” into some extremely knowledgeable professionals at various conferences, schools, the community, and social media.

    Diane Bahr, CCC-SLP provided much of the technical assistance when it comes to speech and language development.  She practices in Las Vegas, NM and is the author of several books herself. Teri Kaminski-Peterson, CCC-SLP in in Minnesota and works so well with children and her book,  THE BIG BOOK OF EXCLAMATIONS prompted me to connect with her.  Amy, an astute mother raising girls in St. Louis, one of whom suffered from CAS chimed in with the “parent readability;” as did her child’s SLP on some of the more finer points of private practice speech therapy. A preschool-school based SLP who worked with my daughter read over the sections on school, as did Kate’s very first classroom teacher, Lisa Circelli.  I knew shew as a winner when she lowered herself to the floor and spread her arms for a big embrace from my little redheaded sprite bringing me to tears.  Kate was literally in ‘good hands.’

    How long did it take?  I don’t know…it’s like childbirth that way.  Awful and tiresome and painfully intense.  And then it’s over.  You don’t remember, but somehow you have battle scars.  And a precious reminder of your labors.  Conception to shelf: 4 years.

    You describe this in your book, but to give some background to those who might not know you, what age was your daughter Kate diagnosed?  How frequent and often were her therapy sessions, and when would you say she resolved?

    As mentioned earlier, Kate was 2.6 years old when she was finally diagnosed.  I say ‘finally’ as if it were a long wait, but it really wasn’t.  Most speech-language pathologists (SLPs) are more comfortable waiting to diagnose until the child is three years old.  But three years (even two-and-a-half) is a long time to wait and to worry and to schlep your child to appointments.  And have no answers.  Kate was evaluated by her pediatrician who was concerned at 12 months.  And again at 18 months.  We saw a speech-path for the first time around 19 months.  She told us Kate was “definitely delayed.”  A baby sister was born.  My husband was transferred out-of-state.  We moved.  We worried.  We got a definitive diagnosis once we settled in Chicagoland.  The diagnosing SLP still recalls how determined I was to get a “label,” saying I was probably the only parent who just came out and said, “So what is it?!”  She said she knew without a doubt we were dealing with apraxia.  An overwhelming sense of relief and then ‘now what’ enveloped me.  I rolled up my sleeves and dug in!  We were intense about our therapy sessions.  Twice a week for about two years.  Then we added feeding therapy (more on that below) so for awhile she was going to therapy three times a week!  Gradually, we cut it down to twice a week (speech), then once a week (speech) and once a week occupational therapy (OT).  By the time she was a first grader (6 years) we were finished with private therapy – Yahoo!

    Many kids with CAS have co-morbidities such as Sensory Processing Disorder, Autism Spectrum Disorder, and/or Attention Deficit Disorder.  These can all affect prognosis.  Did Kate have any co-morbidities, and how is she doing now?

    “You bet she does!” I say with a grin.  It’s true: CAS is often a ‘package deal;’ a combo platter of CAS and…what-have-you.  In our case, Kate had some sensory integration issues as a younger child (3-5 years old) requiring occupational therapy and feeding therapy (food textures, ‘remembering’ to chew, etc.–quite common for kids with CAS). We absolutely loved the combination of OT and Speech therapy (ST)!  It was the wining combination for our daughter.  There’s actually something to that: the vestibular system works in tandem with the speech centers in the brain – this is one reason why playgrounds are a great place to practice speech work.  When Kate was five, her SLP thought there may be “something more going on,” and that’s when she was diagnosed with AD/HD. We added medication to help control the AD/HD when Kate was a first grader and it helped immensely.  Kate’s speech became more organized as did her behavior.  These things *can* affect prognosis, but there are so many other factors that come into play: parent involvement, school support, the child’s awareness of her (dis)abilities and her ability to self-correct speech mistakes, child’s temperament/intelligence, motivation.  I may be missing some, but you get the idea.  I’m happy to report that Kate is a happy, successful 4th grader – one of her teachers call her ‘wildly creative.’  She even has the writing bug like her ol’mom!

    What do you see as the most important thing an SLP can do to help the parent in this journey?

    Wow.  This is tough.  We’re all different and we all seek different services at different stages in the apraxia journey.  I loved when our SLP listened.  It sounds simple, but having an ear to bend and some validation is huge.  As parents, we’re often at a loss of what to do – but we love our kids so much, we’d move mountains.  Let us be partners, too.  Tell us how and what we can do at home to stimulate and encourage speech.  Don’t disregard our efforts or belittle our worries or concerns, invite us on-board and let us know our efforts matter.

    How have you seen CAS awareness and information change over the years, or have you?

    It’s changed incredibly!  When I first started this journey, I didn’t know where to go for information – aside from the internet -and I felt kind of stigmatized sharing Kate’s “problem” with other parents, neighbors, even family.  Maybe that’s part of the process of coming to terms with things, or maybe there’s just greater awareness.  Over the years, walks have been added to most metropolitan areas, support groups have sprouted up, and now we even have Apraxia Awareness Day in May!

    What would be your biggest piece of advice for parents when faced with this diagnosis?

    Have faith. Partner with your child’s school and/or private SLP.  Do your own research, but don’t freak out about everything you hear or read; you’ll need to access all your critical thinking skills because it’s easy to get overwhelmed or feel as if a diagnosis is all gloom-and-doom.  It’s not, there is a light at the end of the tunnel.  Apraxia is often short-lived; there’s a reason it’s called *childhood* apraxia of speech: it’s typically resolved (or resolving) by the time a child is ten years old. Sure, there may be qualities that remain at times, but this is something your child will overcome with the proper support and therapy from a trained SLP.

    I really liked your chapter on things parents can do at home to help their child.  You have so many creative ideas!  Did you do all of these things and how often would you say your worked with Kate at home on her speech?

    Thanks!  Wow – that means a lot!  We did most *all* of those things listed in the book – either at home, or they may have been things she did with her teachers at the school or her SLP in therapy.  We took the approach of “every-moment-is-a-learning-moment” and pretty much exhausted ourselves (and Kate!) in the process.  But that’s not to say parents *should* be super-tenacious in speech work at home.  It’s not for everyone and kids need time just to be kids – exploring, getting dirty, crafting, experimenting, babbling with their toys.  Encourage and be open to that.  Instead of hovering, to be a ‘hummingbird parent,’ popping in when needed and allowing your child to take the reins/direct her own interests while you support.

    Thank you so much Leslie for your time, spreading CAS awareness, and sharing your book with us for Apraxia Awareness Day!!

    To get this book go here!

    Author Biography

    Leslie Lindsay is a former child/adolesent psychiatric RN at the Mayo Clinic and mother of a daughter with CAS. She is an award-winning author of Speaking of Apraxia: A Parent’s Guide for Childhood Apraxia of Speech (Woodbine House, 2012). Leslie and her family live in the Chicago area where she supports the apraxia community, volunteers at the elementary school, and has turned to her time to writing fiction. She hosts a blog of bestselling and debut fiction author interviews at www.leslielindsay.com.  Like her and follow her on Facebook at: https://www.facebook.com/pages/Speaking-of-Apraxia-A-Parents-Guide-to-Childhood-Apraxia-of-Speech/235772599837084?ref=hl

    Leslie A. Lindsay, R.N., B.S.N. 
    Award-Winning Author of Speaking of Apraxia www.speakingofapraxia.com, www.woodbinehouse.comLeslie Author Pic
    Author interviews, give-a-ways, excerpts, & so much more at www.leslielindsay.com
    Like my Author Facebook Page https://www.facebook.com/LeslieALindsay1?ref=hl
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  • Speech Stickers App for Apraxia Giveaway!

    Speech Stickers App for Apraxia Giveaway!

    I’m keeping up the momentum now until May 14th, offering giveaways and prizes in honor of Apraxia Awareness Day!

    Next up is the app Speech Stickers.

    Speech Stickers is the first app that I downloaded for Ashlynn (my daughter with apraxia) when she had first turned three.  I chose it because it was cheap, and said it was developed for children with apraxia.  The app is simple in design with not a lot of bells and whistles; however, my daughter loved practicing her speech with this app.

    The app is set up for kids in the very early stage of apraxia therapy.  The child can practice sounds in isolation and in CV(consonant-vowel) and VC(vowel-consonant) combos. The app is based around blocked practice with a lot of repetition that is necessary for apraxia therapy.

    After you pick your sound or sound combo, you can then decide how many times times the child has to say it before they get a “sticker” or a little animation as a reward.  Then, the child chooses between five characters on the bottom, all of which have a different pitch to their voice.  This is a bonus too, because children with apraxia have difficulty with “prosody” or the melody of speech.  The characters’ mouths model the correct placement.  The above picture is showing ‘m.’  Below the characters are modeling ‘mo.’ This is also great because it gives the kids a visual cue for the correct mouth posture.

    A scoring bar at the top help score and keep track of data. You must press the green check or the red x to move onto the next practice sound.  The app is designed so that the bar can also turn upside down so that the therapist can discreetly score; however, my daughter picked up on this in a heartbeat and would push the buttons haphazardly just so she could move on!    Once you reach the set number you earn a “sticker” or reward.  You can choose from eight stickers seen below:

    They are so simple, but my daughter loved them.  I chose the bus just so you can get an idea of the animation.

    It has been almost three years since I have used this app for Ashlynn, but the app lives on with all of my clients!  Kids of all ages and disabilities LOVE this app.

    I have a 5th grade boy with Down Syndrome who laughs every time he earns a sticker and watches the animation.

    I have a 3 year old who loves picking the alien because it reminds him of a popular TV show right now “The Octonauts!”

    I could go on!  Really, I can’t say enough about this app, and when I reached out to the creator Carol Fast MSPA, CCC-SLP I realized why this app is soo good.  Here are some comments from her:

    “It’s truly been a labor of love for me and I’m always gratified to find that other SLPs appreciate what we do. I’m glad that you found Speech Stickers to be helpful for your daughter and other students.  I work mostly with preschoolers and have found a special interest and passion in my little nonverbal CAS kids. I really love helping find their true voice. This is probably the most rewarding work I’ve done in over 30 years as an SLP.”

    Thank you Carol!  Thank you for your passion for working with kids who have CAS and for a great app that allows us to get a lot of repetitions of targeted syllable shapes in a fun and engaging way for the kids.

    To Enter: Use the rafflecopter widget below to enter.  Good luck!

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  • Why we’ll never stop working

    Why we’ll never stop working

    I’ve been down lately.  Really, really down.  It pretty much started at Ashlynn’s re-evaluation meeting and went downhill from there.  For all the work she’s done, for how far she has come, for what she knows in the face of so many challenges,  it was like a slap in the face.

    It’s really not anyone’s fault.  It’s just the way it is.  I’m dealing with mixed expressive/receptive language issues now.  I knew this, I did….it’s just seeing those damn numbers.  1st percentile, .5th percentile.  Phew.  Deep breath

    There were also awesome numbers.  Articulation is in the average range.  The AVERAGE range!  That’s phenomenal.  Ashlynn is intelligible to perfect strangers in and out of context.  For someone with apraxia of speech, she beat it in 2 years with a TON of therapy, but she overcame it.

    Now we’re faced with new deficits.  Word finding, expressive language, grammar, syntax, receptive language, memory, attention, writing.

    It was overwhelming.  My husband had tears, and he’s the one who always finds the positives and the “what she can do’s.”

    Even her receptive vocabulary test came back just under the average range.  Receptive vocabulary tests have been shown to correlate with IQ tests (even though I didn’t give her an IQ test), and even though I don’t think the test was totally valid since I’m sure her attention played a factor…..

    It still made me pause.  For once I started thinking, maybe we don’t have this.  Maybe I am dealing with limitations.  Maybe I am in denial.  Maybe I’m not seeing things because I don’t want to see them.

    I would read stories and updates on other blogs and get jealous someone’s child ONLY had apraxia of speech.  CAS is no joke either, but if Ashlynn only had CAS then she would almost be over speech forever!  Sigh.  You know you’re down when you’re jealous of other kids’ disabilities.  That is wrong on so many levels.

    I looked everywhere trying to get my positivity back.  I talked to family, to friends going through this journey too, co-workers…nothing helped.  I poured over pinterest looking for inspirational memes and quotes that were going to change my negativity and squash my doubts.  I found nothing.

    I scoured the internet looking for success stories for global apraxia.  One I found was on disability now but at least happy she had made it through childhood.  That wasn’t exactly lifting my spirits.

    At the same time, I finally read a new research article on Apraxia that’s been in my pile.  The article describes kids with motor planning deficits (kids with apraxia) rely heavily on auditory feedback which was proven when they demonstrated diminished speech articulation in the presence of noise.  Gee, I thought. That’s great these kids found a compensatory strategy to make up for their motor planning deficit, but what happens when you have sensory processing disorder and possibly some receptive language issues that makes that feedback unreliable.  UGH

    But then I found it.  My inspiration was sitting right under my nose.

    I know this guy who has bipolar disorder.  When I met him he was kind of a hot mess.  He hadn’t gone to college, was partying, and constantly getting fired from his jobs.  Of course, having bipolar disorder is very difficult.  There are daily struggles in his mind I will never know.  The statistics for someone with bipolar disorder are less than impressive: 90% of marriages end in divorce when one person is Bipolar.  Less than 50% of people with bipolar take their meds, and 1 in 5 commit suicide.  Many live on disability.  Many are homeless.  This guy though, he’s been married for 10 years with no sign of stopping.  He’s loyal, faithful, hardworking, finished college AFTER his diagnosis, and stays on his medication.  Who is he?

    He’s my husband.  He’s Ashlynn’s dad.  Everything he shouldn’t be doing he’s doing.  Everything he shouldn’t be, he is.  My husband, Ashlynn’s dad, defies statistics.

    Then I started thinking, I know this other guy.  He was raised under an extremely physically abusive, alcoholic father.  His parents ultimately divorced.  He was forced to go to war and and live in actual nightmares.  What are the stats on a guy like this?  Well, since he’s the product of divorce, he’s 40% more likely to end up divorced himself.  He’s four times more likely to be an alcoholic.  As a vet, he faces a higher possibility of homelessness.  What did the future hold for this guy?

    Well, he’s my dad, father of three. Married for 45 years and happily retired.  He’s healthy and has a drink maybe once a year.  My dad, Ashlynn’s grandfather, defies statistics.

    And that’s when I started to realize.  Ashlynn comes from a long line of statistic breakers.  It’s in her blood.

    I thought of me.  Had I defied statistics?  Well, neither of my parents went to college, so it would be less likely I would receive a college degree or much less an advanced degree….yet here I am. It was highly unlikely I would have ended up at Duquesne University for an elite group of SLP’s, yet there was I was last summer.  Maybe I do defy statistics.

    My dad’s nephew years ago was on the wrong track.  He was in jail, and he didn’t know how to make a life for himself after he got out.  He was lost.  He asked my dad for advice and my dad said “keep working.  All I know is to work.”  Years later that same nephew had kept a job and was raising adopted children.  He was not in jail and will never go back.  He told my dad he always remembered his words to just keep working.

    So there it was!  Right under my nose.  We are statistic breakers.  We are hard workers, and Ashlynn is no exception. She always wants to work, do homework, practice writing, ball skills, pedaling, speech, read..you name it.  She attacks it, and I realized, I may not have success stories for her EXACT same situation, but I do have success stories for many other hard or seemingly impossible situations and she will be one too…..if we just keep our head down and

    working.

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  • Kaufman DVD and Treatment Kit 1 Giveaway!

    Today is May 1st, which marks the beginning of better speech and hearing month!  More importantly though, the Third Annual Apraxia Awareness Day is May 14!

    To celebrate, I’m offering giveaways all month for apraxia related products.  First up are the immensely popular Kaufman DVD and Instructional Kit 1 COMBO.

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    This kit was honestly instrumental in helping my daughter cross the bridge from being a nonverbal, ineffective imitator, to  becoming a verbal speaking child.  She did this kit for 9 months until she burned out on it.

    Though my therapy style is based more off of DTTC, I certainly use this kit as a tool for therapy with my own clients.  Many times, parents have borrowed my set and worked on it at home with their children for homework.

    This is a $228.00 value!

    I can’t thank Nancy enough for her generosity in offering this COMBO pack for the giveaway, and especially including the instructional DVD, which is so helpful to see how Nancy uses these cards herself.

    How to Enter:  Enter using the rafflecopter widget below.  Must be a U.S. resident and 18 or older.  Good luck!

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