SLP Mommy of Apraxia

Category: learning disability

  • Woes of regression

    Woes of regression

    If you’ve ever watched your baby fail to meet the simplest of milestones..

    If you’ve sat in meetings and offices and were told things like 1% percentile

    If you’ve felt a pain you can’t describe that is only eased by hope..

    You know why regression hurts so much.

    If you’ve ever driven your child back and forth to countless therapies..

    If you’ve ever felt a mix of pride, happiness, grief and so much more when they finally met a goal..

    If you’ve cried because you are always filled with a hidden grief but ecstatic at the same time when they made progress..

    You know why regression hurts so much.

    If you’ve ever watched your baby spend hours in an office while others kids played…

    If you’ve ever comforted them when they said life wasn’t fair needing comfort yourself because you agreed…

    But then watched them say a new word, jump, or write a letter thanks to those therapies..

    You know why regression hurts so much

    If you’ve ever been faced with professionals who don’t understand your child or their disability..

    If you’ve ever stayed up all hours with bloodshot eyes scouring Dr. Internet just to help your child..

    If you’ve ever then found a team and plan that was finally working for your child..

    Then..

    You know why regression hurts so much.

    Laura Smith, M.A. CCC-SLP is the mother to two beautiful children, one of which has a rare genetic mutation that caused a variety of developmental disabilities. She is the author of Overcoming Apraxia and has lectured throughout the United States on CAS and related issues. Currently, Laura is a practicing SLP specializing in apraxia at her clinic A Mile High Speech Therapy in Aurora, Colorado. 

  • Will you push me, Mama?

    Will you push me, Mama?

    “Will you push me, Mama?”

    Lying on the couch after work, mindlessly scrolling social media when my sweet nine year old daughter says, “Will you push me on the swing, Mama?”

    I’m a pediatric speech/language pathologist and my job is AMAZING, but it’s also very demanding and zaps me mentally and physically by the end of the day. An introvert at heart, I need alone time to recharge and refuel. Needless to say, pushing her on the swing was not on my agenda for the night. However, as I looked into her bright eyes sparkling with hope, I put my phone down and asked her to give me five minutes. Enthusiastically she ran to the clock, figured out how long five minutes would be, and then bounded out the door.

    “Will you push me, Mama?”

    There was a time my daughter with apraxia couldn’t say “Mama” and had to go to speech therapy to learn it. Once she had words, she had to learn how to put them together to make a phrase because she also has a developmental language disorder. There was a time she had to go to speech therapy to learn how to add the /s/ to /s/ blend words, words in which an /s/ is next to another consonant as in “swing.” There was a time she had to learn how to use verb tenses correctly and once she understood and used verb tenses correctly, there was a time she had to then practice “interrogative reversals” in order to ask questions correctly. Those days seemed so long. The struggle seemed so long. Yet here she stood, effortlessly doing all those things as though she never spent hours in therapy offices learning how to do them. Here she stood asking to be pushed on the swing, something most kids were doing while she was working hard to find her voice.

    “Will you push me, Mama?”

    Though my daughter can pump her legs herself now and swing, there was a time she had to spend hours in occupational therapy and physical therapy before her core strength could even support the act of sitting up on and pumping a swing. Then, once she was strong enough, she needed more therapy to get the coordination of the movements down. As she got taller, she then needed to learn how to change the motor plan and move her ankles out to the side so her feet wouldn’t hit the ground. Yet, here she stood, able to do all of these things now but still asking me to push her. She’s nine years old. We are getting close to her never asking me this question again and the gravity of that sunk in. Would this be the last time she asked me to push her? My mind flashed back to her beautiful smile when she is swinging. She literally came out of the womb and hogged the swing in the nursery. The nurses all laughed and mused at the baby who was only happy in the swing. It never stopped there. I have numerous pictures, too many to count, of her swinging in various ages of her life.

    “Will you push me, Mama?”

    I thought about how swings go up and down and up and down and how Ashlynn smiles and giggles through it all. I thought about how swings are a lot like life in that way. Ashlynn has a lot of challenges. She has a genetic mutation called BCL11A that has caused numerous disabilities and her life is anything but easy street. If anything, it’s more like the swing in that there are ups and downs, successes and challenges. Through it all though, she smiles.

    “Will you push me, Mama?”

    I thought about all the areas I’ve had to push her. Sometimes I wonder if I pushed too hard. Did I let her be a kid enough? Will she only remember speech therapy, occupational therapy, physical therapy, and tutoring? Nights struggling through homework? Nights struggling through activities of daily living that are so hard for her, such as brushing her teeth or getting dressed, because I know she needs to learn to do them for herself?

    “Will you push me, Mama?”

    So on this cool summer evening in June, tired from work and craving alone time, I got up and pushed her for an hour that night in the backyard. We laughed and giggled and made up games. I reveled in the fact my daughter still wanted me to push her, and I prayed to find a balance in the future of pushing her not a breaking point, but further and further to her potential. Oh, and making sure we find time to keep smiling and laughing along the way.

    Laura Smith is a mother to two beautiful children, one of which was diagnosed with a rare genetic mutation that caused a multitude of learning challenges.  She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech. To learn more visit SLPMommyofApraxia.com

  • 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!

     

  • College admission scandal’s overt ableism

    College admission scandal’s overt ableism

    Like many people, I read the breaking college admission scandal with interest.

    I wasn’t too surprised that wealthy people used their money to get ahead.  Is classism really a surprise at this point to anyone?

    What did surprise me was that Singer’s company falsely claimed that many students had learning disabilities to get special accommodations such as extended time and individualized settings.

    I’m not usually one to point out ableism, mostly because a lot of people are just plain ignorant of how their actions and attitudes are ableist.  However, it is disgusting that anyone would falsely claim a learning disability as a non disabled person.

    My daughter has invisible learning disabilities and these accommodations are in place to help level the playing field.  They are NOT in place to give perfectly non-disabled people a step up.  If I hadn’t read it for myself I’m not sure I would believe it.  Who is that low?  Would these same people feign paralyzation and ride around in a wheelchair too to get some advantage?  Do they have no shame? My daughter works about 1000x harder than the average student just to be able to learn and she achieves small successes only due to these accommodations. To know a student who has no learning disabilities faked one makes me sick.  It makes me more angry than had I known they just cheated.  It’s more disgusting than pretending you were an athlete that you really weren’t (which many did as well).

    The Reason?

    This is the most blatant form of ableist behavior and shows the overt disrespect and obvious discrimination against those who struggle with actual learning disabilities.

    Individuals who already put in extraordinary more effort and time just to be on the same playing field as non-disabled peers.

    If anything though, it strengthens my resolve to keep fighting for disability rights not only for my daughter but for all those with invisible disabilities.  It strengthens my resolve to keep spreading awareness.  To keep advocating.  To keep raising my voice for those who can’t because their voices matter too

  • 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.

  • Top Ten SLP Mommy of Apraxia Posts for 2018

    Top Ten SLP Mommy of Apraxia Posts for 2018

    Hi readers!  I haven’t been as active on the blog as usual because my goal for 2018 was to write a book and I’m happy to say I completed that goal!  My goal of 2019 is for it to be published, so we will see!  In the meantime, I did manage to get some blogging done and here are my top 10 posts for 2018!  Thank you so much for your support and your love throughout the years.  It truly means so much.

    1. The Problem With School SLP’s

    A

    2. Interview with Mikey: The Wish That Turned Into a Passion

    3. Apraxia as a Symptom to a Bigger Picture

    4. Strategies to Promote Speech and Language in the Pre-Verbal or Minimally Verbal Child with Apraxia

    5. This School Year, Teach your Children to be Kind

    6. Finding our Umbrella

    7. Good SLP’s are Addressing the Head in the Hands

    8. The 6th Apraxia Awareness Day Brought Smiles, Tears, and a Jaw Dropping Moment

    9. Report Cards are Bitter Sweet in Special Needs Parenting

    10. Old Faces, New Faces, and the Passing of the Torch

    Cheers to an eventful 2018.  It was a year full of pain and happiness, love and sorrow, and hope and despair.  May we all remember that life can be intensely beautiful and irreparably sad all at once, because that my friends, is the definition of living.

    This 2019, I wish you all the gift of perspective in life.  We all have bad things happen.  We all have stress and we all have pain.  We also all have a choice, and that choice is to wake up each morning with a grateful heart and to focus on our happy and joyful moments rather than be sucked into the pain of despair and heartache.  There was a time Ashlynn’s dx seemed like the darkest event in my life, but I realized it was the beginning of my testimony to some of the most beautiful characteristics this human life affords us.  May God bless us all this year and always.
    Love and Peace,

    Laura