SLP Mommy of Apraxia

Category: Apraxia

  • Building Speech and Quantifying Complexity for Apraxia: Interview with creator Kathy J

    Building Speech and Quantifying Complexity for Apraxia: Interview with creator Kathy J

    I’m so honored and excited to have Dr. Kathy Jakielski, Ph.D., CCC-SLP with me today! I met Dr. Jakielski at the CASANA Intensive Training Institute, as she was one of the instructors.

    The honor is all mine, Laura. Thank you for your interest in my work!

    Kathy, I remember vividly this moment at the end of the training, where we all sat around a big conference table, and you gave an impassioned plea. You expressed worry over the future of apraxia, and families having access to quality, research-based intervention. You worried who was going to carry the torch; and as a mother to a child with apraxia, I felt so much gratitude that there were people in this world like you who cared that deeply about a rare speech disorder many have never even heard of.

    When I saw that you had put out your own toolkit, I wasn’t surprised at all to see that you teamed up with CASANA so that proceeds would benefit the non-profit dedicated exclusively to Childhood Apraxia of Speech and their families. Will you tell us what made you decide to dedicate all proceeds to CASANA programs and research?

    Two reasons. The first is because I deeply appreciate CASANA. Before CASANA was founded, parents of children with CAS had to scour articles and conferences to identify researchers experienced with this relatively rare disorder. Parents then would contact us directly via phone and email with their questions. A single correspondence with a parent seeking basic information could take up to an hour, and additional correspondence often was required to answer follow-up questions. There were not enough hours in a week to correspond with all the families seeking information, and I was disheartened that I couldn’t answer more calls. CASANA changed that. From a practical standpoint, they saved me time, while providing families with the information that they needed to make decisions for their children with CAS. Partnering with CASANA on this project was a way to give back to an organization that exists solely to provide and advance education about CAS.

    The second reason, and perhaps the most important one, is because I trust CASANA. I tell parents all the time that they can go to the apraxia-kids website and trust anything they discover and read there. I also knew that they would produce a high-quality product and protect the integrity of my work.

    Please tell my readers a little more about your background and how is it you came to specialize in CAS.

    My initial contact with CAS was when I was working as a clinical speech-language pathologist in private practice. I treated my first child with CAS in 1984, right after I finished my master’s degree program. There was so little information on CAS at that time, but some of the early researchers, Drs. Barbara Davis, Tom Marquardt, and Harvey Sussman, were at my master’s degree institution, so I was able to participate in some of those early studies. But it was by working clinically with several children with this frustrating motor speech disorder that I really came to know and love its challenges. Working clinically for nine years left me with more questions than answers, so I returned to graduate school to pursue my doctoral degree. The work I began in my doctoral program, researching typical and disordered acquisition of speech, as well as differential diagnosis of CAS, are areas of inquiry I continue to study even today.

    You have recently developed and published a new toolkit used to treat CAS. Is this a treatment plan also (and if not, what approach do you use)? What is it and will you please briefly describe it?

    Building Speech and Quantifying Complexity (BSQC) is a systematic approach for developing therapy goals and selecting words and phrases to target in treatment on a child-by-child basis. It is not a treatment technique, but rather, a phonetics-based approach for deciding what to work on in therapy, but not how to work on it.

    Several therapy techniques (e.g., PROMPT, DTTC, etc.) have been found to be efficacious for how speech-language pathologists can conduct their therapy; however, selecting an evidence-based technique is only one part of clinical practice. Speech-language pathologists also need to be able to select the stimuli that they will target while employing a specific technique. This is the gap that BSQC fills. BSQC is an approach that speech-language pathologists can use to select the goals and stimuli they will target in therapy for children in the early stages of speech intervention. The approach consists of eight speech patterns, or speech frames, and the stimuli that can be used to teach and practice each frame. I have found that many speech-language pathologists do not know how to hierarchically structure the phonetic complexity of speech goals and stimuli for children with severe speech sound disorders, such as CAS. While a speech-language pathologist might be very proficient using various articulatory techniques, if the words targeted are not within the child’s set of motor speech capability, then the child’s progress will be limited and therapy can stall.

    BSQC serves three primary functions. It is designed to help speech-language pathologists: 1) assess a child’s motor speech complexity over time; 2) develop speech goals that become developmentally and phonetically more complex over time; and 3) develop functional stimuli (words and phrases) to achieve each goal.

    Current research indicates principles of motor learning should drive therapy approaches for CAS. Are principles of motor learning incorporated into BSQC?

    Leave it to a CASANA boot camp graduate to ask that great question! Yes, speech-language pathologists want to consider the principles of motor learning as they conduct intervention using BSQC or any other approach. As previously described, the BSQC toolkit is not a therapy technique, but rather, is used to develop the goals and accompanying stimuli for intervention. Speech-language pathologists need to apply principles of motor learning to the technique they employ. It’s easy to do using BSQC, as there are probably close to 1,000 possible stimuli across the eight speech patterns that speech-language pathologists can use to teach each frame.

    How does your toolkit incorporate current evidence based practice?

    BSQC has grown directly out of the rich research literature on the early acquisition of consonants, vowels, and word shapes produced by typically-developing children in babbling, jargon, and early words. The eight speech frames and accompanying stimuli are based on this body of research, along with some of the cognitive motor learning literature. BSQC also provides speech-language pathologists with a sensitive measure for tracking articulatory progress in speech. This measure, the Index of Phonetic Complexity, has been used in some research for the past 20 years; however, this is the first time I am promoting it for clinical use.

    Can any SLP start using this toolkit or is there some training or manual that is recommended first? Are you offering any workshops or trainings? Finally, is this toolkit appropriate for parents to buy also and use at home?

    The toolkit includes a manual that explains the Building Speech materials, which include the goal and stimuli development. The manual also explains the Quantifying Complexity measure, the Index of Phonetic Complexity. In addition to the easy-to-follow manual, there also are close to 800 bright, colorful, child-friendly picture cards depicting many of the words a speech-language pathologist could target using the BSQC approach. The BSQC approach is not appropriate for parents to buy and use at home because of the phonetics background required to understand it, as well as needing to possess knowledge of speech intervention techniques.

    CAS master clinician Lisa Mitchell, M.S., CCC-SLP and I gave a webinar for CASANA on the BSQC approach, which is available for viewing at the apraxia-kids website. I also teach the approach in an online course that’s available through MedBridge, a continuing education company at www.medbridgeeducation.com. In both courses, I explain each step of the approaches, and then you see Lisa putting the approach into action with children on her caseload, which is the real highlight of these presentations.

    Lisa and I also will be teaching the BSQC approach at CASANA’s 2017 Annual Conference on CAS to be held in San Diego, California from July 6-8. Lisa and I will be presenting a pre-conference workshop on Thursday, July 6th. I highly recommend this annual conference to speech-language pathologists and families.

    Therapy for CAS in very individualized due to each child’s unique phonetic and syllabic repertoire, but also should take into account personalized and functional words relevant to each individual child. Can you explain how your toolkit accounts for this?

    I designed the BSQC approach to be individualizable and flexible. There are a myriad of stimuli that can be developed to target each of the eight speech frames, some included in the kit as picture cards, but the key is to determine which words will give a particular child increased communicative power.

    The steps for utilizing the BSQC approach follow.

    1) Phonetically transcribe a representative speech sample from a child and analyze it to determine the child’s phonetic repertoire.

    2) Examine the phonetic repertoire to determine which of the BSQC eight speech frames you need to target, and in which order.

    3) Develop a list of functional words and phrases for that particular child to teach each of the speech frames you decided to target.

    4) Determine the therapy technique you will use in therapy, and incorporate principles of motor learning as you design your sessions.

    5) Use the Index of Phonetic Complexity to quantify incremental progress in speech skills over time. The sensitivity of this measure can help document change that can be used to show progress.

    What sets this toolkit apart from other cards out there marketed toward apraxia?

    This therapy kit provides a unique way of hierarchically ordering speech stimuli based on speech acquisition research. The speech measure, the Index of Phonetic Complexity, purports to measure the phonetic complexity of a child’s speech, which is a very unique feature.

    Thank you for agreeing to offer one today for a giveaway! Where can my readers go to buy this product, and for my International readers, can this product be shipped to other countries?

    Go to www.apraxia-kids.org to place an order. International readers can email CASANA directly for information regarding shipping BSQC to other countries; however, please note that BSQC was developed for American English, and while easily adapted to different dialects of English, it is not intended to be used for languages other than English.

    Kathy, thank you so much for being here! I also can’t thank you enough for all you have done to advance the field of speech/language pathology, especially in the area of Childhood Apraxia of Speech. I’m honored to call you one of my mentors.

    Thank you, Laura, it’s been my pleasure. Thank you for wanting to find out more about BSQC. And thank you, also, for the wonderful clinical, educational, and family work that you offer!

     

    Kathy J. Jakielski, Ph.D., CCC-SLP is the Florence C. and Dr. John E. Wertz Professor in Liberal Arts and Sciences at Augustana College in Rock Island, Illinois where she serves as Chair of the Department of Communication Sciences and Disorders. She has over 35 years of clinical experience working with children, adolescents, and young adults with severe speech impairment, including CAS. She currently conducts research on genetic bases, differential diagnosis, and intervention efficacy on children with CAS. Teaching the next generation of SLPs and thinking about CAS is what gets her out of bed in the morning.

     

     

    Enter the giveaway below!  This is over $175.00 value!  Please note this toolkit is specially designed for SLP’s.  If you are a parent and enter the contest, please give to your child’s SLP!  Thank you!

    *Note – this giveaway is now closed*

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  • That’s not acceptance, that’s discrimination

    That’s not acceptance, that’s discrimination

    “That’s not acceptance, that’s discrimination.”

    I watched a fellow apraxia mom say this today while she wiped tears from her eyes.  Why?  Well, she was looking at a beautiful newspaper article in the Valley Breeze that she bought special.  She knew it featured her seven year old son who threw out a first pitch along with two other children that day, and couldn’t wait to see his picture and read about it.

    She knew he would be in it, because the paper made a big deal to take his picture, make his mom sign a photo release, and took down some information.  Her son has severe apraxia and dyspraxia, conditions that make it difficult for children to learn how to speak and how  to literally learn every single motor movement, causing significant developmental delays.  Her child has the same condition as MY child.  He has to work about 1000x harder than ANY other kid to learn how to do something others find so easily like talking, running, cutting….and he does through HOURS of therapy.  In many ways, he sacrifices a normal childhood because of all the therapy, so you can imagine how special being in a baseball little league feels to him, even if it is the “challenger league” for kids with disabilities.   Our kids don’t get a lot of “awards” “accolades” or even opportunities to feel good at something.  It’s heartbreaking. They struggle with everything.

    So that’s why throwing out the first pitch alongside two other children was an incredible day and Kendra couldn’t wait to see his smiling face in the paper.

    As she opened it up, her eyes first scanned the pictures.  Her smile and excitement quickly faded to confusion and disbelief.  Where was her son?  There were the two other kids.  The “typical” kids who threw the first pitch alongside him.  In fact, there was not just one but TWO pictures EACH of the children.  Maybe there was some mistake?  Maybe he was on another page? I can imagine her looking at the page before and the page after, yet, Talan was not anywhere to be found.  In fact, though the other little league team was pictured, NOT ONE CHILD from the challenger league was pictured, and THAT my friends is why Kendra came to say,

    “This is not acceptance.  This is discrimination.”

    How is this possible in 2017?  I mean seriously.  It’s not even special treatment to feature Talan.  All Kendra wanted was equal treatment.  Every child who threw a pitch was featured EXCEPT for Talan.  That is not an honest mistake.  This is blatant discrimination.

    Every child, disability or not, is still a child.  They want to feel accepted.  They want to feel proud.  They want to feel included.  They want to have friends.  They feel happiness people and yes, they FEEL sadness too.  The message is clear.  He doesn’t matter as much as the typical kids.  He doesn’t have as much to offer. Despite taking his picture and his information, it wasn’t worthy of being featured.  Oh well, he doesn’t talk right?  He’ll never know.  Oh well, he can’t read, let’s feature the kids who can.  It’s not like Talan will know the difference right?

    “This is not acceptance.  This is discrimination.”

    I write this piece for Kendra, because sometimes it feels like no one cares.  Like our kids don’t matter, so we have to care about each other because if we don’t take care of each other, no one will.  It’s so hard to get people to care, and it’s easy to silence our kids because they didn’t have a voice to start with.

    How screwed up is that?

    “This is not acceptance.  This is discrimination.”

    Letting him throw a first pitch, taking his picture, and writing down his information to NOT feature him alongside his typical peers is egregious.  Valley Breeze, you know what you really missed out on?  A chance to feature a beautiful piece on children of all challenges  playing and living harmoniously.   We aren’t asking for special treatment.  We are just asking to be included and have this world appreciate and include children and people of all walks of life.  This piece would have been the PERFECT opportunity to do so, but instead, the Valley Breeze chose exclusion and discrimination.

    Shame on them.  So guess what.  I’ll do what the journalist at the Valley Breeze failed to do.  I’ll feature Talan and his teammates on the Challenger League in Cumberland Rhode Island.

    The Challenger League sign is “Never Let the Fear of Striking out Keep you from Playing the Game.”

    Way to go kids and let’s make it a great season!  We see you!  We love you!  We’re cheering for you! Go baseball!

     

     

  • Why do we call it “childhood” apraxia of speech? Isn’t it lifelong?

    Why do we call it “childhood” apraxia of speech? Isn’t it lifelong?

    Ever wonder why CAS is called Childhood Apraxia of Speech? Is it really necessary to have the word “childhood” in there?  Doesn’t it ostracize those who never truly outgrow apraxia?  Plus, isn’t it a lifelong neurological disorder? Why can’t we just call it apraxia, or verbal apraxia? You might be surprised to know the reasoning was more thought out than you might think.

    If you’ve ever had these questions, Sharon Gretz, founder of CASANA, has answers!

    I can speak to this issue from history and experience! When my son was diagnosed at age 3, the “disorder” was called “developmental apraxia of speech”. Over the years of developing parent support and ultimately CASANA, it became clear that many (including insurance companies) interpreted the word “developmental” to mean that a child would outgrow the problem. That all would be well if more time was given for speech development. We all knew that was a bunch of Bull#hi$! These children were not going to “outgrow it”.

    Why is it necessary though to have the term “childhood” in the name?

    When I incorporated CASANA, and with consultation with founding board members Kathy Hennessy and Mary Sturm we decided on the name “Childhood Apraxia of Speech”… So, this term signified that this problem has begun in childhood – at some point of childhood. In most cases, there were no known “causes”, however, a population existed in which we learned children with various neuro-developmental disabilities had apraxia of speech and also children whom had neurological events occur (stroke, injury, illness that caused a brain change). The “Childhood Apraxia of Speech” term was a cover for ALL of those incidents or occurrences in childhood. The more that various researchers heard of the  term, the more they believed that it did in fact – COVER – all children who, for whatever reason, end up with apraxia of speech.

    So why do we use the terms juvenile diabetes, or juvenile arthritis, or childhood leukemia or any number of similar terms? We do that because the same conditions appear in adults, but yet, when they appear in children there are different ramifications that may not appear in the adult onset condition. Knowing this about someone, an adolescent a teenager, for example should mean something to a trained professional. They should understand that the clinical issues and/or appearance of the disorder or difficulty is likely to be different than if that client before them did not experience that same issue in childhood.

    I can also say from a personal perspective that young adults whom have dealt with CAS, call “it” or its remnants whatever they want to call it. Most of them will say apraxia or speech apraxia. It is their prerogative of course! Why would anyone dispute that? And yet, understanding that they “grew up” with apraxia of speech during their formative developmental years, provides a different foundation than to say the young person acquired it as an adult via brain injury, damage, etc.

    I was privileged to be the consumer adviser to the ASHA AdHoc Committee on Apraxia of Speech in children. Their published document began to change things for our kids in a positive direction. For the very first time, children with CAS were recognized as having a specific speech sound disorder which was different than other disorders and that their evaluation and treatment needed to be different. Do you realize this was only 10 years ago??!! Progress seems slow, I know it. But, if you were among those of us who have young adult children, you know that life is much better for you and your children than it had been even 10 years ago!!

    Thank you Sharon for always advocating for our kids, looking out for their best interests, and ensuring a better future for every child who has apraxia!

  • To love something with all your heart may also mean you have to let it go: The future of CASANA

    To love something with all your heart may also mean you have to let it go: The future of CASANA

    I’ve never been involved with non-profits until recently.  I mean, I had the couple that I liked and donated to and then went about my merry way.  Once I had Ashlynn and met Sharon Gretz, the founder of CASANA, knowing I could never repay her for the kindness and support she gave me, I turned to supporting CASANA 100%.  As a mother to a child with apraxia herself, Sharon automatically had 50% of my trust, and the other 50% was earned very, very quickly.  Sharon cared.  That’s the bottom line.  She has an incredible gift for bringing people together and getting people support. I cannot tell you how many times I thank God he gave this world a Sharon and her son Luke.

    That’s why her stepping down announcement was shocking.  She said it was for the good of the non-profit, and she said these changes happen, so we all trusted her like we always have.  We meaning the base.  There is a base of CASANA supporters spread out across North America, and she connected with us on some level. That’s what made her special.  She lives in Pittsburgh but could make these sincere and genuine connections nationwide that made people like me want to give 100% in helping CASANA.

    We all tried to take it in stride.  To say we were shocked and devastated was an understatement.  We all had no idea this was coming. We loved Sharon though, legit.  It’s weird to think you can love someone you have only met a couple times, but I guess as I said, that is her gift.

    We waited almost with baited breath who the new interim director would be.  Let’s be clear, we all knew no one could replace Sharon.  No one.  It’s like a dad who says no man will ever be good enough for his daughter……that’s the kind of love we have for Sharon.  She’s just that important to us. However, when the interim director was announced there was no mention of apraxia.  No connection to it at all.  If you remember, I told you Sharon had my first 50% trust because of that alone.  The resume was impressive.  This woman knows non-profits, so that’s good…..we guessed.  We all tried to convince ourselves someone who has no connection to apraxia can fill Sharon’s hole, and then we all started to panic.  Silently at first, but then slowly we started whispering to each other.  In tandem, Sharon seemed to be pulling away.  She told people she wasn’t going to be at the apraxia conference or the apraxia walk. Things she had always done in the community now were leaving too.  We all didn’t understand.  Had we burned her out?  Was she done with apraxia once and for all?  How could she seemingly turn her back on us?

    One apraxia mom and CASANA supporter told me reading about the new director was like meeting dad’s new girlfriend for the first time.  It’s funny, but unfortunately, there is nothing funny about that feeling.  We all started feeling hurt.  Would this still be the CASANA we once knew?  It felt like the heart was gone now, and with no heart, there isn’t much motivation.

    I decided to bring it to Sharon.  I knew she would be hurt but sometimes when you love someone and you value the relationship with them, tough conversations have to happen.  This is true with a spouse, a mom, a sister, or a good friend. I have found that to avoid a tough conversation, in many cases means to avoid the truth.

    This post does not need to outline every particular, but what it is meant to do is to let the base out there….our apraxia tribe know….you guys, we’re going to be okay.  Sharon’s heart is not out of apraxia.  In fact, it cares more than I ever thought possible.  Her decision epitomizes the saying, “If you really love something, you have to let it go.” Her decision is like a parent who must let their children fly on their own.  They cannot be successful their entire life under their parent’s watchful eye.  A child is reared to eventually leave and flourish on their own.  Isn’t that what we’re all trying to do with our children with apraxia?  Give them the tools to fly on their own?

    Sharon sent me these two articles and if you, like me, had wondered how Sharon could seemingly cut all ties, these explain why.

    Founder Syndrome can take down a non-profit

    Strategies for Handling Charity Leaders

    I didn’t know anything about non-profits before.  I didn’t know founders no matter how well-intentioned have ran their non-profits into the ground.  I didn’t know that even when trying to step away and do what’s right, there is still a risk of running it into the ground.  I just can’t imagine that would happen to CASANA, but that’s the problem and that’s why I’m not the founder.  Sharon did know, and that’s why she had to have the strength to let it go.  She had to dig deep and admit her own shortcomings, and she did this so CASANA would continue.

    I should have trusted her like I always had, but I was sad and hurt, and it’s hard to think clearly in those moments.  Emotions take over.   How silly is it to think a woman who started a non-profit and dedicated 17 years of her life to it would just walk away without any doubt, worry, or honestly…agony.

    Sharon’s vision has always been big, OBVIOUSLY.  We all love her so much because of her selfless and unending support to all of us and our kids.  Of course then it would only make sense that this decision too was selfless in nature.  To walk away from something you created  from the ground up in the hope that it will grow bigger and help more people takes a depth of character, strength, and humility not many people possess.  It should come as no surprise to us though, her base, that it was the driving force behind the decision.

    I want to reaffirm my position as an apraxia advocate and CASANA warrior in spite of the big changes.  We are all working out here tirelessly so that CASANA will grow……and now we have to trust Sharon, as we always have, that this is the way to do it.  I’m happy to say I emailed the new interim director Michele Atkins, and she responded immediately and positively and seemed open to hearing from me.  I would encourage you all to do the same.

    Sharon will still always be a driving force in my work on behalf of CASANA.  I will carry her support and love she showed to me and countless others every time I mention the name CASANA.  I ask you all to do the same.  CASANA is still the organization we believe in.  It still has a board of directors and staff that Sharon brought on who are apraxia warriors themselves.  I do admit in my sad moments it felt the heart left, but the heart was bigger than we could even imagine. The heart still beats for CASANA but recognized for it to grow it had to step aside.

    I just want to take a minute to list anonymous quotes from the “base” spread throughout the US as to Sharon’s lasting impact on us all.  This list is compiled by not one, but many who she touched throughout North America.  Some were taken from FB comments and some were specifically solicited; however all are sincere and representative of Sharon’s lasting impact.

    “A public shout out to an angel in my eyes…..I have learned amazing things from CASANA and it is now part of my soul.”

    “Your accomplishments helped me win a proper education for my apraxia child.”

    “You changed the world for children who struggle to speak.”

    “I feel so blessed to have meet you and received such warmth, love and concern for our family.”

    “Sharon thank you for paving the path you have to bring apraxia to the forefront.”

    “Thanks a lot for you dedication! You have changed my life and children in Brazil who struggle to speak!”

    “What a legacy you have created!”

    “So beyond thankful that our paths crossed all those years ago. You have changed my life.”

    “My family and I are so incredibly grateful for your vision and passion to help children families and clinicians.”

    “CASANA has been an amazing place for me to find a home and friends when I needed them most and you are the reason for that.”

    “Thank you. You have given my family and child a roadmap to giving my child a voice. I can’t thank you enough for that.”

    “Thank you for EVERYTHING you’ve done to help our kids find their voices! I will be forever grateful that our paths crossed during my son’s apraxia journey. Your knowledge, empathy, and “light at the end of the tunnel” attitude always gave us such hope during times we felt so hopeless.”

    “Thanks to your contributions, countless children have found their voices!”

    “I always think of you as a pioneer. You have charted a new way of helping families deal with the tremendous impact of apraxia.”

    “Thank you so much for choosing to devote your brilliant mind, your determination and your huge, huge heart to making the world a better place for children with apraxia.”

    “YOU are one of my personal heroes and you will always be a part of my heart.”
     

    “I trust you enough to let you go.”

    “Sharon has been my gravity. Those times in this apraxia journey when I wanted to spin out of control Sharon would reign me in with her calm voice of reason and experience. She has given me direction using a strong enough nudge to get me started without pushing me away nor crushing me with her strength. Mine and my son’s lives have been forever been changed for the better thanks to the force that is Sharon Gretz. Thank you!”

    “I wish I could give you a big hug and thank you in person for everything you’ve done, not only for us personally but for everyone. If it wasn’t for CASANA, I don’t know where we’d be. You will truly be missed. I wish you the best of luck and pure happiness in your future endeavors!!”
     
    “How does one find the appropriate words to thank someone who has impacted their life on so many levels? Sharon, my life and my son’s life changed from one click on the computer and when I first met you I felt like I was “home”. You have been my anchor for 5 years and I would never be able to advocate for my son the way I do if it weren’t for you. Thank you for being such a wonderful person to have along side of our family during this journey”
    “I know I’ve told you this a thousand times, but it will never be enough. Thank you, from the bottom of my heart, for all you have done for me and my family. I never knew how much one person could have an impact in so many lives until I met you. You truly are the Mother Teresa of Apraxia.”
     

    “When I was floundering under water, you pulled me and countless others up for breath time, and time, and time again.  I will never for the rest of my life forget that kindness you showed me, and I am forever thankful God made a Sharon and a Luke for this world.”

     

    To honor Sharon now is to honor her life’s work and achievement that has helped all of OUR kids and countless others, and that is to continue to support CASANA, because in the end what matters is that EVERY CHILD DESERVES A VOICE.

     

     

     

  • Apraxia, special ed, and grad school. One woman’s remarkable tale.

    Apraxia, special ed, and grad school. One woman’s remarkable tale.

    One day I was perusing The Mighty to see if any new apraxia articles had been posted, and I ran across an article by Kelsey Belk, a graduate student studying to be an SLP.  I was so inspired by her article I just had to reach out and thank her.  I found her on facebook and saw that she was currently attending the University of Northern Colorado! I live in Colorado! Can anyone say coincidence, and as a reminder, you all know I believe they are signs and so I took it as a green light to contact her.

    Kelsey, thank you so much for writing that article!  I plan to save it and have Ashlynn read it one day.

    Let’s start with what you remember about speech therapy? When did you know you had apraxia?  Do/did you have any co-morbid disorders aside from apraxia?

    I was diagnosed at age 2 with apraxia. I also was diagnosed with SPD and dyspraxia in my early toddler-hood age as well. In late elementary school I was diagnosed with ADHD and Oppositional Defiant Disorder.  As I am getting older I keep getting diagnosed with more psychiatric and learning disorders. I really want to do research on the possible relationship between childhood apraxia and a later diagnosis of psychological conditions!

    What was your school experience like?  Could you tell us how you did academically and if it affected you socially?

    I have always been a very highly motivated student and am a huge social butterfly – I actually cannot stand the idea of being alone. In elementary school I did rather well with the accommodations the school provided. It wasn’t until later that I realized how big the gap was between my peers and I, especially in reading and writing for me. In high school I started to receive worse grades and this really negatively affected my self-esteem because I didn’t understand why. I felt like I was putting in double the effort than my friends, but always got worse grades. This is when I went back to get more accommodations and was re-evaluated and was told I had all of the same results as a severe dyslexia case, only was able to read rather fast therefore my poor decoding/reading/spelling/phonological awareness was tied to my apraxia. Ever since then I have been receiving extra help such as a note-taker in class and all my books on an audio file. It is not perfect, especially in college. Most of my peers will skim read, but I cannot do this and have to sit and listen to the entire 100 page textbook chapter – but it still makes it much easier than without the accommodations. Overall I have been very successful in school, but it has definitely been a huge struggle.

    My social life is more difficult to describe due to some of my co-morbid diagnoses that affect social relationships. In elementary school through high school I had amazing friends, although seemed to change friend groups frequently to find these friends. However, I also had really negative relationships. I was terrified to talk to adults because they could never understand me – which affects me to this day. Kids were always carefree and often did not even notice a difference. I did have some bullies though – I remember particularly having kids make me repeat things I could not say (like rabbit and railroad). I did really well to not let this get to me though! When I got to college I met all these new people from all over the world. This led to more issues with people not being able to understand me, and I often got asked “where is your accent from?”. I never had an issue making friends growing up or now, but I do have issues with some of the less accepting people. But, it showed me who the good people were and has allowed me to make amazing genuine friends that I may not have found otherwise!

    How has apraxia affected your life?  Do you still have residual struggles?

    Apraxia has definitely shaped me to be who I am.  When you have to put in so much effort just to play “catch-up” at school, it will definitely change you. I had one speech therapist that I loved, but many I did not like which made me not like school on speech days. It has affected me academically and socially, as described above. I am lucky to have had great support systems growing up that allowed me to succeed academically and made me want to go to college. I know that this is not the case with many special ed kids, because you just get so burnt out. It is exhausting to act “normal”. Even to this day I don’t think my professors understand that half of my cognitive energy goes to my talking clearly, focusing, and reading – so in class when I have to take breaks I really need them. I get home completely exhausted everyday, and then have to focus on homework. People forget that disabilities don’t disappear, and it is a constant struggle. I definitely have residual struggles, like mentioned I get asked where my accent is from or I am asked to repeat myself often. Most noticeably, it is in my reading or SLP tasks, because that is what I am studying. Apraxia has greatly affected my self-esteem – I refuse to talk on the phone, get defensive quickly about my speech, and still get scared to make presentations/talks. Last year I decided to go back to speech therapy to try to fix these speech errors, and made some progress on the ‘ai’ vowel however I am to the point I am just going to accept these speech errors as part of me.

    What made you want to become a speech/language pathologist?

    I always wanted to work with kids, but did not really want to be a teacher. I became very interested in this field and just stuck with it! I particularly love the Deaf/hard-of-hearing population. I think it is great to help someone communicate – as social connections are so important. I also have felt that the current model is not often what is best for the child – and I hope to change that. I feel like this field overlooks mental health way too often, even though it is so hard being a child who is different. I hope to work to combine the two fields more to help children succeed in every part of their life – most importantly making them feel valued and happy. I also think we often assume that children need to be like ‘us’ – look like us, talk like us, walk like us, etc. I don’t think this is always the case. I think it is important to see the child as an individual and help them succeed in the modality best for them. For me, I need accommodations such as audio books – no amount of therapy would fix my problems. For some kids this may be ASL or an AAC even, so I hope to change the view so speech therapy is actually centered around the kid.

    My daughter is 7 and currently struggles with what seems like every motor task.   What advice would you give her and all the other kids who struggle with apraxia and related learning disorders?

    I think it is important to not compare yourself to others. The school system is set up to where everyone is pressured to be at this perfect level – but that is not real life. In real life everyone has strengths and weaknesses. I know that I will always have weaknesses in these areas – and it will always come back (such as driving – it is so hard!). But, I also have learned to find my strengths – which are ones you probably share. I learn to persevere – when someone tells me I can’t so something I work as hard as possible to show him or her I can. I am creative – having disabilities makes you find new and creative ways to complete tasks. And most importantly, I gained strength in having empathy. This one seems so simple, but is one so many people lack.  Just remember to never give up – I did. I dropped out of speech in 6th grade because I wanted to be normal and I regret it. In the words of Taylor Swift, “haters are gonna hate hate hate”. Don’t let other people get you down, do it for yourself! Whatever you accomplish in life will be perfect, as long as you keep loving yourself for who you are.

    What advice do you have for parents?

    Accept your child for who they are. Yes it is good to practice correct motor tasks and speech at home, but also remember they are kids! They need a break and need to be able to talk to you without being corrected. Find a balance between the two. Let your child make decisions too – explain the IEP to them and let them give their important in what they want to learn and work on. And do not be ashamed to seek out mental health help (if needed)! There is absolutely nothing wrong with therapy; it can help your child grow in self-esteem and self-confidence. Also remember to not put all the pressure on yourself, you child goes to an SLP/OT/PT/specialist for a reason, just enjoy being a parent!

    There is so much good advice in here Kelsey! Thank you so much for your candor and honesty.  You sound so much like my daughter.  She’s a huge social butterfly too, and works harder than everyone else around her.  You give me so much hope for her!

     

     

     

     

     

     

     

  • Them some big holes to fill: A tribute to Sharon Gretz

    Them some big holes to fill: A tribute to Sharon Gretz

    I cried last night.  Not just a few tears either.  Big, ugly, chest heaving tears.  I think my husband was a little taken aback.   It’s not that’s he’s never seen me cry, but it’s not very often and it’s usually because something really big happened.  They can be happy or sad tears, but the events that inspire a full on cry have usually been big, like the birth of our children, Ashlynn’s dx of apraxia, or the time I thought my Grandma was dying.

    “Sharon’s leaving!!  She’s stepping down from CASANA.”  I wailed.

    In case you don’t know, Sharon Gretz is the founder of the Childhood Apraxia of Speech Association of North America (CASANA), the non-profit I now work tirelessly to promote.

    “What’s the point in being the walk coordinator now???” I demanded at Cody.

    “Laura, it’s not like CASANA is going away is it?”

    I shook my head and managed to get out they are hiring an interim executive director until a permanent one can be placed.

    “What will we all do????  She helps all of us.  ALL of us.  Who is going to care that much?  Who is going to answer all of our questions in the facebook group, and if they do, who could possibly be as knowledgeable as her???  Who could possibly be as selfless as her?”

    I told you friends, it was a big, ugly, irrational, downward spiraling cry-fest.   At the very least, I think my dear husband finally understood why I do as much as I do for apraxia and CASANA now.  Not that he didn’t before, but it’s just, I don’t think he realized why I was 100% all in.

    I first had indirect contact with Sharon before Ashlynn was ever born.  I was a new SLP working in the schools and a Kindergarten boy showed up on my caseload nonverbal.  One day he named all the letters of the alphabet, but he could not string any sounds together intelligibly to save his life.  I remembered as an SLPA helping my mentor treat a kid with apraxia, and I immediately was suspicious.  I googled it and found apraxia-kids.org.  I found “start here” articles on how to treat CAS, printed them out, and changed my treatment plan.  He said his first words that year to his dad.  That family thanked me, but little did they know, CASANA (Sharon) changed the path for their son.

    It’s difficult to say, but CASANA and Sharon are almost synonyms in my mind.  It’s not true of course.  CASANA has an amazing staff, but I can’t help but think even they wouldn’t exist had it not been for Sharon.

    The next time I had contact with Sharon, it was direct.  Ashlynn had just been diagnosed with CAS and I found a parent group on facebook.  Every time I posted a question, Sharon would usually respond.  They were always the type of response that makes someone sit up and listen, because this “Sharon Gretz” really seemed to know her stuff.  I had no idea for quite some time she was actually the founder and executive director of CASANA who would answer me and countless other parents, sometimes at night during her free time, to help us and give us support.

    After a few months CASANA announced they were having their national annual conference in Denver. Sharon encouraged everyone from the facebook group to come and say hi to her.  I bought my ticket and showed up with my husband.  I remember being sooo nervous.  Oh my gosh, the woman standing there was amazing.  She had a child now resolved with CAS, founded a non-profit, and basically knew everything about apraxia there was to know in the world right now.  What would I say to her?

    I’ve written about it before, but I will never forget.  She encouraged parents to put a picture of their kiddo in their badge and she pointed it out as we were talking.  She genuinely cared about my kid and wanted to know about her.  I started embarrassingly pouring out my heart to her.  I had tears in my eyes and was looking down the entire time.  When I looked up she had tears in her eyes too and was staring right at me.  She gave me a hug.  I’ve never felt more understood in my life.  I had all this guilt about being an SLP and my daughter having apraxia, and I had no other person I knew in my position.  She was the closest because she had a doctorate in speech and she relieved me of so much guilt in that moment.  I had found my people.

    From there I had a face to the name.  Every time she responded to a post on facebook I was in awe of her dedication, compassion, and genuine love for all children with apraxia.  She was the first person to cheer anyone’s success story, no matter how big or small.  From a child saying “hi” for the first time to a child learning to read, Sharon celebrated them all with the parent.  I tried for awhile to follow every post and do the same, but there are a lot of people in that group now, and it was very time consuming.  I had a deeper appreciation for Sharon.  This wasn’t a job to her, this was truly a vocation, and it wasn’t just the facebook group.

    CASANA funds needed research so we know what treatment approaches are best and most effective for kids with CAS, which is important because traditional treatment approaches for speech will not work for CAS.

    CASANA has set up a network of support for families via the facebook group.

    CASANA funds iPads and therapy for kids with apraxia to help families crippled by the cost of therapy which is usually not covered by insurance.

    CASANA provides education to professional SLP’s who never received the right training in grad school (despite thinking they did) to treat this rare but treatable severe speech disorder.

    CASANA helps set up walks nationwide to honor our kids.  They receive medals and are rewarded for all of their hard work that no one else recognizes but their family, therapists, and teachers.  They get to meet other kids like them, and know they are not alone.

    CASANA is more than Sharon, but she is the heart.  She is…or now was.  Change is hard and the unknown is scary.  It felt like the heart of CASANA died when I read that announcement, but after my ugly cry I’m rational once again and I know my husband’s right when he says she put all the supports in place.  We are not left without.  We have a network of people for support.  Research will continue.  Walks will continue.  Education will continue.

    I know it will, but it still makes me sad it’s without Sharon.

    Sharon epitomizes the quote “Be the change you wish to see in the world.”  She never wanted anyone to go through what she went through with her own son, which was lack of resources, knowledge, and awareness of Childhood Apraxia of Speech.

    Someone wrote “What a legacy!” and yes it is.  Through it all Sharon,  you remain one of the kindest, most humble people I have ever met.   That will never be replaced.  You have accomplished more in 17  years than other people could hope to do if given two lifetimes.  What a blessing you are to us, to this Earth, and especially to your son, who will one day realize the extraordinary (and I mean EXTRAordinary) love of his mother.

    Sharon, when I was floundering under water, you pulled me and countless others up for breath time, and time, and time again.  Eventually I found my footing on dry ground, and knowing I could never repay you, I resolved to work tirelessly for CASANA and for kids like mine who deserved a voice.   I will continue to do so, and pay it forward to every parent who crosses my path, because I know what it’s like to literally feel saved by one person who just took 5 minutes of their time.

    You are a living, breathing example of all of my favorite quotes that I’ll share below.  Let’s have a toast.  Raise your glass.

    Here’s to you Sharon.  May you find some peace and relaxation.  When you close your eyes to sleep, may your dreams be filled with the satisfaction of knowing you not only helped your son, but in doing so, have set up an infrastructure to ensure every child like him has the opportunity to find their voice.  May your next journey be filled with blessings.  Most importantly, don’t stay a stranger.  Remember to come back and visit.  We are your people.