SLP Mommy of Apraxia

Category: Childhood Apraxia of Speech

  • Growing up with CAS: Still achieving her goals

    Growing up with CAS: Still achieving her goals

    Today, as part of my growing up with CAS series, I am so pleased to welcome back Reagan Crabtree!  I first interviewed Reagan when she was still a teenager a little over THREE years ago!  A lot can change in three years! Reagan is currently double enrolled at a community college and a university studying broadcast journalism and political science.

    Hi Reagan!  Thank you for coming back!  I have loved getting to know you more over the years and hope one day we can finally meet in person! I’m very interested to know how college is going.  

    What are you studying?

    Communications and political science

    Do you have or need accommodations?  

    Yes, I have accommodations. Extra testing quiet room, recording device for note taking. I go to a support room to do my tests. I still struggle with taking tests in the other room. I look up and around when I hear a sound.

    Since I haven’t talked to you since before you graduated high-school, can you tell me about your high–school graduation?  Who was there and what was the day like?

     It felt so great to look back on my journey and see how far I have come from when I started school.

    I know you are a huge advocate not only for apraxia, but for disabilities in general.  Can you tell me what your big dream is?

    To work on the Today show behind the senses and show people how children that have dreams can also achieve them.

    You recently participated in the Rose Bowl Parade on the Easter Seals float!  Can you tell my readers a little more about Easter Seals and how they have helped you?

    Easter Seals supports me with school and helping me talk to teachers. If I didn’t have Easter seals I would not be where I am today. I my fourth year of college working hard to achieve my goals.

    Despite so many challenges, you always seem to remain positive and upbeat.  What advice do you have for others in your situation who want to give up?

    Don’t give up and get supports that can help you in college.

    My final question is, what inspires you?  

    Karen Myers because all work in journalism being deaf from birth inspires me everyday to become I journalist. To show others that people with disabilities can do it. It might be hard but we can still achieve our goals!

    Thanks Reagan for coming back and updating us on your journey!  I just know you are meant for bigger things! You and I are huge advocates for neurodiversity, and there is such a need for more disability stories if we want a society that is fully inclusive for people of all different abilities!   I look forward to watching your continued journey and success!

     

  • How do you say I love you?

    How do you say I love you?

    There was a time I prayed for Ashlynn to tell me she loved me.

    Having apraxia and a language disorder made that tough.  Even when she could repeat “I love you” when given a model, that didn’t mean she could volitionally pull it out and say it spontaneously.  That took more years and work in therapy.

    Ashlynn, even before the birth of her brother, has always been attached to my hip.  An apraxia mom friend of mine lovingly calls them barnacle babies. I knew Ashlynn loved me before she could ever say it. Her actions have always spoken louder than her words.

    Ashlynn is now nine.  She has been able to say ‘I love you” without any prompts and on her own accord for at least 5-6 years now.  We had two back to back snow days in Denver thanks to a “bomb cyclone” blizzard that left Denver experiencing the lowest barometric pressure ever in its history.  That’s pretty incredible, but through it all, Ashlynn was attached to my side.  We don’t get a lot of down time.  We are always on the go from school to therapies to tutoring and then carving out family time, 1:1 time sitting at home and relaxing seems like an anomaly in our lives.  It seems like it, because it is.

    Wednesdays she usually goes to school.  Then I pick her up and we meet her dad at a place to drop off Jace and then I take her to PT and then swallowing therapy.  We get home around 6:30 where we gulp down dinner and then have to do her school homework and possibly the other hw from all of her therapies.

    Being a kid and relaxing doesn’t happen on this day.

    Thursdays she of course goes to school.  I’m working so her dad picks her up, lets her see her grandparents for an hour who live by school and then she comes to speech therapy at my office where my colleague/mentor treats her.  Afterward, we stop and get her a super nutritious meal from McDonald’s that she eats in the car before going to Girl Scouts, which has been nothing short of amazing for integrating her with her neurotypical peers and providing a “normal kid” activity among all of her therapies.  We then get home 10 minutes before 8 where we scramble to get her school homework done and I feel guilty for not getting to her OT, PT, and swallowing hw as she gets ready for bed.

    Not this week though.

    ALL of that was cancelled thanks to the two consecutive snow days. We actually just hung out.  She sat by my hip and we talked, played with the dogs, watched the news that droned on about the blizzard and took silly selfies on my phone. It was amazing. Was this what life was like for “normal” people?  Are there any normal people?  What IS life like for kids who don’t have a therapy every day after school?  I’d ask my son, but he’s always caught in the cross hairs and even though he doesn’t personally have therapy, he has spent more than his fair share in waiting rooms.

    She must have told me “I love you” at least a dozen times or more.  I wasn’t doing anything special.  I was just here..and she was here…and we all were here snowed in.  I have to admit I didn’t even think about the days when I longed to hear “I love you” without having to prompt her.  I can’t believe that those three words started to lose their luster.

    Tonight was Thursday night.  In what was supposed to be a packed night of Jace’s Cub Scout Pack meeting and Ashlynn’s routine girl scout meeting, I also had an SLP meeting where I met with other area SLP’s.  My husband was to take the kids to both scout meetings that were now cancelled due to the weather.

    As I left, Ashlynn said goodbye as though nothing was wrong and then immediately her face fell and she started crying.

    “Ashlynn!  What’s wrong?  I’ll be back okay?”

    Ashlynn fought back tears and said she would miss me.

    “I’ll miss you too but I promise I will be back ok?” I said as my heart was breaking. She frequently gets like this when I leave.  I thought about the day and how she had told me she loved me at least a dozen times.  When you tell someone you love them that much it starts to lose its effect.  I think I (shamefully) started to take it for granted.  I gave her my work cell phone as a compromise.

    “If you miss me, text me and me only ok?”

    Her tears turned to a smile and she squeaked out an “ok.”

    “Do NOT text anyone else from this phone.  I will be busy but I promise I will text you back.”

    As I pulled out of the driveway I saw her face in the window.  She waved vigorously and then frantically blew me kisses.  I blew them back.  I wasn’t even off our street when she texted me her signature, “Ashlynn.”

    I usually make her text her name first because she uses my phone to text a small but approved list of family members who need to know it is her texting them.  I stopped at a stoplight and told her I would text her when I got to my meeting.

    In those two hours she texted me that she loved me three times.

    I wouldn’t think anything of it, except she frequently texts five other family members and though I know she loves them, that is not something she says to them.  She likes to send emojis, ask them what they are doing, or tell them about her day.  Due to her severe language disorder, I have many times talked about how Ashlynn talks in scripts.

    This “I love you” script though.  This particular “text” script was saved just for me.

    I almost cried reading it tonight at my meeting in between her emojis, selfie pics, and other comments.  I was sure this “script” was purposeful and meant just for me.  After one when I wrote back “I love you Ashlynn” I received an immediate response that said “I love you mom so much.”

    Ashlynn is nine.  NINE. Half her child life with me is gone.  My God.  Where did it go?  I still remember everything vividly.  Ashlynn was 2 years and 11 months when she was diagnosed and life took an accelerated pace after that.  We have been on the hamster wheel for six years now.  I can still look at the little table where I poured out those foam stickers while nursing my son and she said her first spontaneous “I love you.” I can close my eyes and remember like it was just yesterday.  I remember dancing in our living room to “Call me Maybe” and her laughing and throwing her head back like I was the most hilarious person on the planet.  And I remember wishing, hoping, and praying before I knew she had global motor planning problems that she would just try and imitate my dance moves much less my voice.

    As I sit here with tears in my eyes, I recognize  Ashlynn was and always has been so limited in what she could tell me.

    However I do believe now it was ALL going in.  I’ve always felt like my greatest job and purpose in life was to not only raise her and Jace, but to make them feel like the most incredible humans that they are.  With Jace it’s easier.  He talks to me.  I can get him to tell me his feelings.  That has never been the case with Ashlynn.  She struggles to express her basic thoughts much less complex feelings.  However, she has always found profound ways to express them with her limited language such as tonight when I was the recipient of multiple “I love you” texts.

    During the snow day we took selfies and she frowned at the pictures where I’m smiling but you can’t see my teeth.  “Why are you smiling like that? she demanded.  I thought to myself I liked how less of my wrinkles showed but instead just said, “I don’t know.’   She frowned disapprovingly.

    “Don’t smile like that, ” she said.

    I asked her why.  I wanted to know what was wrong with that smile.

    “It’s not YOUR smile mommy.  Smile real ok?”

     

     

  • Shaming parents about home carryover

    Shaming parents about home carryover

    I’ve been on this special needs journey with Ashlynn for a long time now.

    I have grieved, recovered, grieved, and recovered again. I have developed thick skin.  I have felt guilt, then peace, more guilt, and then peace.

    I thought I was past all the BS.  I have accepted Ashlynn has severe needs.  I have accepted my journey with Ashlynn is going to be MUCH longer than I ever anticipated and I have embraced it.  This girl goes to school from 8 to 2:45, and almost every day after school she has some sort of therapy or tutoring strategically scheduled to help her overcome all of her learning disabilities.

    I’ve been done making excuses for not doing homework.

    I finally just started being honest and saying “We will see. She is a very busy and overscheduled little girl,” when therapists would ask about homework .  Ashlynn goes to school and then has therapies after school, and then we hope to get home to eat and then finally do her SCHOOL homework.

    That doesn’t mean there isn’t any other homework.  Oh no.  For all the therapies she receives after school there is also homework.  Always homework.  So not only does the average kid NOT go to therapy or tutoring everyday after school, they also then don’t have the homework assignments from said appointments after school.

    My daughter has it all.

    Go to school and get homework, and then attend therapy and tutoring that takes away from homework time after school and receive MORE homework on top of school homework for the extra after school services.  Oh, and my daughter has global motor planning issues, so any homework assigned is usually homework that needs to be done everyday.

    Everyday my daughter is expected to do regular school homework and then follow through homework for OT, PT, Speech and tutoring as well.

    If for some reason said homework isn’t done or done to the fidelity of a therapist’s expectations, I get to see the raised eyebrows and judgemental eyes.  I know what they are thinking even if they don’t say it.  “You couldn’t carve out 5 minutes for some simple yoga poses?  Speech word practice? Sight word drills?”

    Again, I thought I was past this.  I was done feeling guilt.  My whole life is running around trying to get my daughter the help she needs and then coming home and trying to be a mom and get dinner and then at least getting through her school homework. I have been done for a LONG time apologizing for not getting the therapy homework done.

    That was until today

    Two weeks ago I put Ashlynn into a therapy called oral facial myology to help with her mouth breathing, tongue thrust and immature swallow.  I knew going into this the homework component was going to be big.  I knew this! We received a sticker chart to keep us honest.  Ideally she would do the exercises 2x – 3x  a day and we would reconvene in 10 days.

    Today was our second follow-up appointment. I was so proud of Ashlynn!  We had done the exercises every single day!  A handful of days we managed 3x, most days we did 2x a day, and on three days including one where she spent the night at her grandma’s we did 1x a day.

    I was proud of us.  That was no easy feat. Sometimes it cut into bedtime but I knew this was important and I was willing to go the extra mile.

    My sails were immediately shredded within 5 minutes of our second visit.

    The swallowing therapist was warm and inviting as usual.  We were seven minutes late because we were driving from PT and I had forgotten to ask the physical therapist to end 5 minutes before and instead she ended 5 minutes late.  We still made it though! School ended at 2:45, we were at PT at 3:30 and then we were at swallowing therapy at 4:25. I was proud of myself for getting her to all these places.

    “How did the homework go?  Did you complete it?” the therapist asked Ashlynn.  Ashlynn enthusiastically nodded yes as I took out the sticker chart and the therapist looked on disapprovingly.  So there are three days here you could only do one practice session?  For this program to be successful, she needs to be doing the exercises at least 2x a day.

    “There are a couple days we did three!  Does that cancel out the three days we could only fit in one?” I laughed nervously.

    I looked up to a face of disapproval.

    “For this program to work, you really need to be more consistent,” she lectured.

    I swallowed a big swallow and collected our things. I think I literally gulped back tears.  I was paying a lot of money for this therapy.  Of course I wanted to see it be successful.  Of course I wanted to practice with Ashlynn as much as I could.  Guess what though?  I also needed to make sure we completed her homework and read at least 10 minutes per night.  Then and only then did I need to make sure she was doing her homework for reading tutoring, OT, PT, and speech as well.  Oh and she also needed to eat at some point and take a shower.  Being a kid?  Nope.  That’s not in the cards apparently.

    The guilt and responsibility is overwhelming

    I cried as I left the swallowing woman’s office.  I was trying!  I thought Ashlynn and I had done amazing!  We practiced what seemed like every spare minute we had together, which actually is very little spare time together!  I was proud of our dedication, but this woman had only criticism.  She told me if the program was to work, I really needed to get more serious about practice.

    I went home that night in a state of anger.

    I was yelling at my kids, my husband, the computer..really anyone who would listen.  I was devastated at having a therapist, a well respected therapist basically tell me if I didn’t take the homework seriously and with the fidelity it needed to be, my child wouldn’t improve.

    I railed against everyone and then I messaged an ally.

    The ally I messaged is an SLP who specializes in apraxia and oral facial myology.  I was so lucky to meet her at L.A.’s Walk to Talk for Apraxia when I took Ashlynn at 8 years old.  Her name is Lisa Klein and she has a reputation for not only being an amazing therapist, but being an incredible friend, mentor, and encourager. I barely know her yet knew I needed to talk to her.   Fortunately for me, she told me I could call her on my way home and like a crazy mom who is desperate I did.  I talked in a long winded series of run on sentences and questions and when I stopped she said the most impactful thing to me that brought me to tears.

    Laura, first of all, you are a great mom and that girl has come so far because of you.

    I started balling.  Not like crying either or tearing up.  No. Chest heaving ugly cry balling.  I just needed that validation.  She went onto say things that our myofunctional therapist suggested too like going every other week.  She brainstormed how to get in practice or what exercises we absolutely couldn’t miss. She said all of this though with compassion and free from judgement, and that is exactly the type of therapist I aim to be too.  We need to meet parents where they are at and we need to know parents are under an insane amount of pressure and are doing the best they can with the tools that they have.  I need a therapist to understand that.  I’m constantly shocked by the number of therapists who have so most judgement. I say this all the time but I say it again.  Please, if you are a therapist reading this please have compassion and understanding for the parents.  We are fighting daily battles and crying tears no one ever sees.  Please be kind.  Please.

  • Growing up with Apaxia: A hidden card up his sleeve

    Growing up with Apaxia: A hidden card up his sleeve

    Hi Mark!  I’m so excited to have you as part of my Growing up CAS series! You recently just completed your first year of college correct?

    No it was my first semester of college.

    Congratulations!  I hope you know by you sharing your story and experience you give other parents out there so much hope!  You are an inspiration and someone for our kids to look up to! 

    Can we start with you telling us a little bit about yourself?  

    I’m Mark Lippert and I’m 19 years old. I live in Saint Paul Minnesota with my Mom, Dad and my sister. When I was diagnosed with apraxia I was 2 ½ years old.

    What are your childhood memories of having apraxia and going to therapy?

    My early memory of being in speech therapy is that I needed my mom and sister to be in the speech therapy room with me or I would not work.  As a reward for me after speech therapy my mom would take me and my sister out for ice cream by my speech therapy center.  It was 40 minutes away from my house and my sister had to sit with me in many speech therapy sessions, so that is why she got ice cream too!  At the end of each summer speech therapy, my mom would take me and my sister to “Chuck e Cheese” which had 2 floors.  

    Did you have any additional academic struggles or co-morbidities?

    Yes i had a lot of struggles with school over the years. I had a IEP since I started school K-12. I got diagnosed with a learning disability when I was in 2nd grade.

    How has apraxia affected your life, or has it?  Do you have any residual issues?

    Apraxia has affected me and my whole life in good and bad ways.  My speech can be an issue but I  do not let it define my life.  For example, I might not be understood the first time when I’m talking to someone. But I do not let it interfere in the conversation with someone.  Apraxia has shaped me into who I have become and if I did not have Apraxia my whole world would change. I bet I would not have the same work ethic and motivation that I have. I have gotten so many compliments by teachers on work ethic and motivation that I show in my life.

    Work ethic is a huge key to success!  Speaking of school, what was your school experience like?

    My school experience has been mostly good where teachers would support me and what I had on my IEP where I might not have been as good as other students but they would always understand. For all of my school career I have been that type of student in the Special education program were the student would be flip flopped being in a regular classroom and being in every kind of special education classroom. My case managers over the years have been ok at best.  In high school I was  put in special education classrooms where it did not fit my educational needs in that it was really too easy for me. In total over having case managers excusing elementary school, I have had four with the the most being in high school. Overall my school experience has been good when my supports fall into place.

    What do you want people to know about you and others living with CAS?

    Trust your child’s class performance over IEP Re-evaluation testing.

                                IN SOME CASES     

    That apraxia kids can understand everything that you say. I think that apraxia kids’ brains can process at the same or a little faster as anyone can.

    What advice do you have for those growing up and/or living with CAS?

    Just keep fighting! I know that you might not want to go to speech therapy because you know that you can’t say the  word you have been trying to say as clearly as possible.  You might not say it that time but you are going to say it in the long run. When i was younger I hated when people said that I was going to speech therapy. I would tell them to just call it “Speech.”

    Most parents are so worried about the future when their child gets an apraxia diagnosis.  What would you tell them?

    Like my mom says “ there is always a light at the end of the tunnel.”

    Do not set any expectations for their education career and their life.  They might surpass them all like I did! My parents did not think I could ever be in college. They thought at the best I would go to a Trade school. Do not ever let the internet shape a picture of your child’s life going forward, because your child might have a card up their sleeve that they might not show you at their start of life, but at the end they are going to show you everyday!

    That gave me chills Mark!  You are helping to change the stigma around apraxia and special education!  I can’t wait to see what you do moving forward!  You definitely had a few cards up your sleeve and I’m sure your parents couldn’t be prouder!

    Growing up with apraixa is part of an ongoing series that aims to celebrate neurodiversity and highlight those who have grown up with Childhood Apraxia of Speech and related struggles.  If you are interested in being featured, send an email to lauraslpmommy@gmail.com

  • Did I cause her apraxia?

    Did I cause her apraxia?

     

    When Ashlynn was first diagnosed with Childhood Apraxia of Speech, I think most parents will relate when I say I spent (pointless) hours wondering what had caused it.

    Back in 2012 when Ashlynn was diagnosed, the most current information we had at the time was that it could have three main causes:

    1. Brain Trauma such as a stroke in utero
    2. Genetic causes
    3. Idiopathic – meaning of no known cause

    Though I knew this, I couldn’t help but cycle back to questions.  Questions that kept me up at night.  Any parent of a child with special needs has probably done this endlessly.  It is probably one of the main causes of sleep deprivation in special needs parents right behind “am I doing enough? and goes something like this.

    Was it that time when I was 6 months pregnant and I had the stomach flu?  Did I wear the painting mask long enough when I painted her baby room?  Was it because I had to have a C-Section?  What about the vaccines, giving her Tylenol, or that time she bumped her head?  Maybe it was……..

    And before I know it, I’m deep into the weeds unable to find my way out.

    It doesn’t help I had been privy to professional “inside” comments with colleagues who blamed parents for lack of reading, lack of talking, lack of stimulation etc.  You can read about my snub to those “opinions” in my article where I snub the 30 million word gap theory.

    It also didn’t help I would hear stories from other apraxia mamas who would share their personal experiences of being blamed and shamed.  

    So, I sought answers. It was a revolving door of specialists, waiting lists, and additional diagnoses, but still no answers as to the cause.  I would cycle through periods of acceptance and guilt, such as in this post I wrote when she was a little over 4 about a year after her CAS dx.

    Earlier this year, I thought we had found our answers when we went to rehabilitation specialist at Children’s Hospital who diagnosed her with dystonic cerebral palsy. Though I had more answers to her disability profile, I still didn’t have any answers as to what caused all the issues.

    No answers that is, until we found ourselves in the office of a genetic doctor and genetic counselor.  This is not to be confused with general genetic testing that a pediatrician can order either.  It was there that we would learn the cause of everything.  It was there, I would finally know why Ashlynn had apraxia, dyspraxia, hyptonia, ADHD, dysarthria, SPD, CP, and learning disabilities.  The answer was housed in a small set of letter and number combinations called:

    BCL11A

    A quick pub med article revealed that of the few case studies we have, children shared commonalities with:

    1. Non-verbal or low verbal status
    2. Abnormal muscle tone
    3. Gross motor delays
    4. Childhood Apraxia of Speech
    5. Dysarthria
    6. Hypotonia
    7. Dyslexia susceptibility

    The doctor explained the genetic mutation was “de novo” meaning it was not inherited and happened at conception.  It was a complete fluke when the sperm and egg came together that this mutation happened on the 2nd chromosome.

    Is it possible to be completely stunned and then not surprised at all at the same time?  Is there a word for that?  If there is, that is how I felt.  I knew as a professional researching this endlessly it wasn’t my fault.  Mom guilt though.  Mom guilt is a real thing.  It is strong, irrational, and overwhelming. So, in that sense, I wasn’t surprised.

    Knowing though that a genetic mutation was the single cause for all of her disabilities was shocking, but then quickly reaffirming. So many things went through my mind with the biggest one being,

    “This really wasn’t my fault, and furthermore, there is nothing more I could have done to change this.”

    The genetic landscape regarding apraxia is a new and quickly changing field.  We are going to see more research and information coming out now recommending that genetic testing be pursued.  Look for a follow up post with me talking about this new and changing frontier.

    For now though, I need time to process and learn.  A mother does better research than the FBI after all, when searching for answers about their child.

     

    Laura is a speech/language pathologist specializing in Childhood Apraxia of Speech and mom to two amazing children, one neurotypical and one neurodiverse. Laura is a speaker, writer, Denver Walk Coordinator for Apraxia, and is the voice behind the website SLPMommyofApraxia where she is passionate about Apraxia Awareness. 

     

     

  • When inclusion works: my hope for the rest of 3rd grade

    When inclusion works: my hope for the rest of 3rd grade

    This past break, I went over my posts from 2018, and read the article I wrote at the beginning of the year.  In it, I begged parents to teach their children to be kind as I wrote about the importance of inclusion.

    You can read about here.

    I was filled with worry and trepidation as Ashlynn started third grade.

    Last year in second had been one of her worst years with peers and friendships.  She frequently came home with bloodied shirts from her picking her fingernails.  Many times, the nurse had to change her shirt it was so bad.  She always reported that she hadn’t played with anyone at recess and my heart broke for her nearly everyday.  In second grade, she was also bullied in the bathroom but thankfully some other students heard and told the teacher.  Fresh off the heels of a great summer, I worried to see her go back to school again.

    This year though in third grade, has been one of her best years for growth not only academically, but also with friends and feeling like she was part of the class.

    The teacher told me at parent/teacher conference in November that she had told her class if they see Ashlynn sitting alone to go grab her and include her because many times it’s not that she doesn’t want to play; but rather that she has a hard time jumping into a situation.  The teacher went on to explain the kids initially did it because they were instructed to, but as they got to know her they now do it because they wanted to.

    Every year before winter break, 3rd grade throws a Luau party to add some fun and a twist to a normal Winter celebration.  I volunteered to run a craft with the class. I couldn’t believe what I saw when I got there.  Ashlynn was completely assimilated into the classroom as one of the kids, and not the “special ed kid” or the “ILC kid.”

    As she talked to her friends I thought of her speech therapy.   As she navigated the limbo stick like any of the other classmates I thought of her work in occupational and physical therapy. Her special education teacher wrapped up her current progress monitoring showing how she had rocked her goals because she knew it would be the best Christmas present to see all of her success and she was right.

    As she completed some seat work independently I thought of her TA who understands the difference between enabling and helping.

    This is how inclusion is supposed to look. Every human whether they have differences or not all want the same thing. They want to feel useful, included, and loved. Her smile says it all.

    Honestly I didn’t need any Christmas presents this year.  My cup was overflowing.  I just pray as Winter Break is over and she heads back to school, that the second semester will be as amazing as the first.

    Laura Smith is a mother to two beautiful children, one of which was diagnosed with a constellation of issues including apraxia that can be traced back to a genetic mutation entitled BCL11A. She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech.