SLP Mommy of Apraxia

Category: cerebral palsy

  • ATV journey with disabilities

    ATV journey with disabilities

    When Ashlynn (my daughter with Logan Dias Syndrome that caused a host of disabilities) was younger, I’m not sure I ever pictured her riding an ATV. However, I remember excitedly buying her a power wheel for Christmas. She had just turned three. I had visions of her riding it up and down the sidewalk! I couldn’t wait for her to receive it!

    I remember taking this perfect photo and couldn’t wait to see her hit the road!

    Except, as with everything, I didn’t realize how hard it was going to be for Ashlynn to drive it. It involved steps like

    1. pay attention

    2. steer

    3. manage the pedal.

    Oh and doing that all at once, well, that was seemingly impossible.

    Determined to help her though, I spent many nights running up and down the sidewalk beside he. I was leaned overhelping her steer while she got the hang of the pedal. My back would be wrecked when we came inside. My husband snapped this picture of us, and though both of us are joyful and smiling, I remember feeling heartbroken and sad on the inside.

    Power wheel

    Why did it seem she had to work to learn and enjoy any childhood toy? A tricycle. Jumping. Skipping. Really anything. The answer of course came later. Dyspraxia. Dystonic Cerebral Palsy. ADHD. Logan Dias Syndrome (variant on BCL11A).

    As long as she was still in to try, I vowed I would be in to helping her. I also remember thinking at the time, if we start now on this coordination to steer, work the pedal and pay attention this will help her long term when she learns how to drive. Though at the time, I had no idea the extent of disabilities.

    I honestly don’t even remember when she put it all together. I do remember her driving into the fence a lot. Eventually though, she did learn and burned through at least two other power wheels.

    Ashlynn is now 13 and way too big for a power wheel. She’s also been expressing a desire to learn how to drive when she’s 16, which honestly terrifies me. My husband recently bought a junior ATV and Ashlynn had been hesitant to get on it. Hesitant that is, until last night. She had watched her brother for presumably a sufficient amount of time before announcing, “Okay I’m ready to ride the ATV.” My husband put on her helmet and explained the controls. My anxiety started rising. Oh no, how is she going to coordinate the gas and the break and steering and paying attention all at that SPEED?? I tried to helicopter from a distance.

    Sensing my anxiety she looked back at me before taking off and said, “Mom don’t worry ok? I’ll go slow.” I gave her a half smile marveling at her language and speech. A simple sentiment seemingly unimpressive to anyone except someone who watched all the hours she worked and continues to work in speech therapy.

    That’s when it happened. My heart jumped in my chest watching her take off. All my fear, all my anxiety, all my PTSD (let’s be honest) culminating now in this moment. At worst she would get hurt and at best she would have to handle another disappointment.

    But guess what?

    She rode off like she’d been riding it her entire life. She went slow as promised but she was doing it. She turned around to come back, (cautiously) but she did that too. Then she did it again, and again and again. She giggled and did it again. I challenged her to honk the horn. It took her a minute to find it but she did and now she drove, giggled, paid attention, turned, went faster, slowed down, stopped AND honked the horn.

    I thought back to that mother excited for her to ride a power wheel, and then heart broken she couldn’t. Memories flooded my mind of all the things she knows how to do now but that took an enormous effort. Walking, jumping, skipping, riding a tricycle, a big wheel and a power wheel. I never in my wildest dreams ever pictured her on an ATV.

    I smiled, then I laughed, and I cried. Tears down my face of I don’t know what. Every emotion I guess.

    Ashlynn’s dream of driving doesn’t seem far off anymore (even though it’s still terrifying). See her in action on my YouTube here.

    ATV
  • First middle school track meet!

    First middle school track meet!

    Ashlynn participated in her first middle school track meet with all general Ed peers. She was so excited to ride the bus there

    🚌

    She smiled the entire time. Kids high-fived her and knew her name. She was included. She had a fan club there consisting of me and her dad, both sets of grandparents, her friend and his mom, and last year’s SPED teacher and para because I was so worried no one would cheer for her. I was wrong. All the parents clapped her on and cheered her to the finish line. It was amazing. Maybe this world is changing…in the best kind of way.

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    She literally smiled the entire time. Even while running.

    ✨

    Sometimes the kindest thing you can do for someone is simply to include them

    ✨

  • Journey across a long trampoline

    When Ashlynn was three, I enrolled her in gymnastics. 

    I knew it was going to be awesome.  She was so cute in her little pink leotard and ponytail.  I can still remember how much fun she had.  I can also remember being heartbroken and sitting there hurting.  The favorite activity was a long, large trampoline.  The kids would all wait their turn and then happily jump forward down it with ease. 

    I didn’t know at the time Ashlynn had developmental coordination disorder and dystonic cerebral palsy. 

    Even if I did, I’m sure I still would have felt a tinge of pain as I watched her get on the trampoline.  Only thing was she couldn’t jump on a trampoline.  Her little body bent up and down at the knees knowing what it should do but she just couldn’t do it.  She started to hold up line. Anxious toddlers yelled at her to “go!” so she tried to walk.  She kept falling so an instructor had to go hold her hand and walk her to the end. 

    Though my heart was hurting her happy face caught mine and she was anything but sad.  This would be the start of this little hero teaching me the real lessons about life and spoiler alert it’s not about being perfect and never failing.  Quite the opposite.

    We’ve had years and years of OT And PT now at this point.  While other kids spent their time playing and doing things like jumping on trampolines that came easy to them, Ashlynn learned to do it alongside therapists. 

    Today I took my kids to an indoor trampoline park by our house.  It finally opened after being closed for COVID and we bought them a season pass. My husband has been taking them consistently for about a week.  It always takes Ashlynn time to acclimate to a place.

    At one point I looked over to see Ashlynn on a long trampoline. She was jumping across it with another girl that looked like her age.  They were playing racing games and other things.  Looking at her, the average person would have no idea how far this girl has come.  She looked like any other 11-year-old out there just being a kid. 

    My mind flashed back to that gym all those years ago now and the pain I felt.  I had not thought of it in such a long time.  I wonder if part of me had blocked it out.

    As I watched today, I saw years of speech therapy though allowing her to be conversational and speak to and play with this peer.  I saw years of OT And PT that built her strength and taught her the motor planning for something so many parents take for granted – a child jumping.

    I remembered the lessons I’ve learned on this 11-year journey with Ashlynn, and they are many.  Suffice it to say, I have learned progress beats perfection.  I have learned for each time you fall, to get up 100 more times still smiling. I’ve learned happiness is in the journey not the destination. I have learned that no matter how bleak it seems, the human spirit is limitless, and no one can ever predict the power of resilient soul who refuses to give up.

    Ironically as I was thinking these things a song came on.  It was Ashlynn’s first song ever she tried to sing along to on the radio.  It’s Mumford’s and Son’s I will wait.  I wrote about this in my book and quoted the lyrics that were poignant to me. They were poignant then, and they are poignant now, and Ashlynn I promise, I will always wait for you and be cheering you on.

  • 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. 

  • A teacher, a dog walker, and an answered prayer.

    A teacher, a dog walker, and an answered prayer.

    We are currently in the middle of the COVID 19 pandemic. I think it’s week 4. I’m not sure. Time blurs.

    I was feeling it yesterday. The weight of it all. Not being able to leave the house. All the closures. Working from home while teaching my children and doing their assignments with them. The unknown about when this will end. All the cancelled events. I wrote last night I was a tired that sleep couldn’t fix. I moped. I prayed. I moped some more.

    I wrote in my journal and meditated on gratitude. Gratitude is always a secret ingredient to shifting out of a bad perspective. Where our focus goes, our energy flows.

    Today my daughter with dyspraxia and cerebral palsy took a BIG header over her scooter. I know it must be bad when my son came running in announcing almost panicked, “Ashlynn fell again!!”

    Ashlynn falls a lot. It’s the nature of her disorder. It gets better the stronger she is, but with no private or school PT, she has weakened a bit. She’s fallen a lot lately, but usually just her knees. She rarely tells us because she has a high tolerance for pain, which can be a blessing and a

    curse. Jace never comes running like that for a hurt knee.

    That’s when I saw her bloody face. Blood was in her eye, under her nose and in her mouth. I usually panic but I just ran and hugged her while my husband got a cold compress. It was a bad fall. Her eye and lip are swollen. I’m guessing she will have a black eye. We cleaned her up and she rested for 30 minutes snuggling with her dad.

    I went about doing work and chores and 30 minutes later found her outside back on her scooter.

    That’s Ashlynn. She’s the strongest person I know. She literally and figuratively always gets back up. She never stops trying. She has been her happy self during this quarantine. She walks the dogs. She persevered through all of her school work with a smile. She still wants to a teacher and dog walker.

    I called out to take a break and she started crying. She asked if we could walk the dogs instead. We’s already walked them today for 40 minutes but I agreed. And as usual, as her dog pulled the leash she ran giggling ahead.

    It immediately brought me out of my funk. I was looking at her back that said “A voice” and thought how hard she had fought to find her voice. Life has always been hard for her. Why had I been moping again? Was I seriously moping yesterday? In that moment the dogs got tangled and Ashlynn burst out laughing and I laughed with her.

    A teacher, a dog walker, and an answered prayer to me through her.

    Laura Smith, M.A. CCC-SLP is a 2014 graduate of Apraxia Kids Boot Camp, has completed the PROMPT Level 1 training, and the Kaufman Speech to Language Protocol (K-SLP). 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.

  • The IEP meeting I wanted to attend.

    The IEP meeting I wanted to attend.

    I never knew before I had a child with an IEP (individualized education plan), how awful these meetings can be for parents.

    Before I had my daughter, IEP meetings were part of my job and I attended them weekly with a room full of colleagues and the parent or parents. I had no idea how it felt being on the parent side. I do now and it feels scary, nerve wracking, and very intimidating.

    I haven’t gone back and added it up, but today was at least the 9th and probably 10th IEP meeting (individualized education plan) we’ve had for my daughter Ashlynn. I don’t think I’ve ever had a meeting where I wanted to go to it. I can particularly remember the meetings that gutted me. Looking back it probably wasn’t any one educator’s fault. It was my position in the process of it all. It was like additional problems kept adding up. Just when I thought I had apraxia down, she would get ADHD, dyspraxia, issues with memory, issues with language comprehension……and the meetings were full of her can’ts. I could talk about how to write a strengths based report or run a strengths based meeting, but in the end even that wouldn’t have been enough to fill or patch the holes from the stab wounds from all of her can’ts.

    This time though was different.

    Starting last year, Ashlynn started to turn a corner. She was no longer speaking in as many “scripts” but was formulating her own novel sentences. She grew exponentially on her reading. The special education team got to know her and they saw what I saw and believed what I believed Ashlynn was capable of. Instead of the words “she requires more repetition than most,” hurting my soul, I was encouraged because they said it with the conviction behind it that they would get her those extra reps because she is capable.

    This entire past year I’ve felt the momentum and seen her IEP goals in action in Ashlynn’s everyday life.

    From SPED, I’ve seen Ashlynn finally understand money, time, and her math facts. She has RETAINED these facts. Did it take one hell of a lot of repetition? You betcha, but they did it and when Ashlynn has learned something, it’s like riding a bike; she doesn’t lose it. Ashlynn’s reading has continued to improve and we are working toward closing that gap. We aren’t there yet, but I SEE it. I SEE it and I feel the momentum. I’ve seen it within her book choices and through her reading out loud. In addition, many skills she needed accommodations for she is now independent with. She has mastered the classroom routine, she doesn’t need direct line of sight supervision for safety, and she is independent with basically all of her ADL’s (Activities of Daily Living). The one that made me smile was teaching Ashlynn to stop and think and give her time to process and understand what was being said so that she could give a thoughtful answer instead of just blurting out anything. We all laughed because she will frequently now tap her brain and say “hmmmm” to give herself time to think. Again, seeing IEP goals materialize in my child is not something I can quite explain. It’s phenomenal.

    From her SLP I saw the direct result from her working on formulating more complex sentences with “so” and “because” come to life at home. In addition, all the vocabulary work done in speech has seemed to literally lift Ashlynn out of her language disorder fog. Where before language was literally just flying over her head, she is comprehending and making connections like she was never able to before, and again I’m seeing that in her everyday conversations with me as well.

    From PT we remarked at how she can perform tasks like standing on one leg for 6-9 seconds and doing jumps etc, something that once seemed like a pipe dream with her hypotonia, cerebral palsy, and major motor planning problems. I told her how she could now ride a bike with no training wheels and that Ashlynn chooses to do workout videos and could follow along.

    From OT we marveled at her mastery of her ADL’s around school, how she can tie her shoes now, and her ability to follow up to 3 step directions that involve motor planning tasks. With adapted graph paper, Ashlynn’s can complete writing assignments and really is just working on putting it all together: getting thoughts on paper, letter formation, spacing, punctuation and legibility. She can do all of those tasks adequately if given separately. I’ll take that. There was a time she couldn’t write her name. That took “more repetition than most, ” but I smiled this time. I had it all wrong before when that phrase would burn me. No one said she can’t do it, and that’s what’s important. More repetition than most? Deal. Bring it on. THAT we can do.

    From mental health she is doing great with whole body listening and finding more peers to play with and inserting herself into play on the playground. Next step is learning how to engage socially with peers in conversation.

    The whole meeting was amazing. I was on cloud nine. The takeaway? Ashlynn’s going to make it.

    I sat there and thought back to Ashlynn’s early days. Was this really the same girl? The girl who would get too distracted she couldn’t even hang up her coat and backpack and get to class without assistance? Was this the girl who spent all of preschool, kinder, and preschool just learning the letters of the alphabet, much less learning how to read? Was this the girl who spent Kinder, 1st, and 2nd grade trying to master addition and subtraction and now was rocking that but also money and time? Was this the girl who was so clumsy and uncoordinated that she couldn’t ride a tricycle or put her shoes on the right feet much less tie them?

    It was and she was freaking killing it.

    Though there were many, many, many times I felt defeated, I NEVER was defeated. I always held the vision for Ashlynn. I held it steadfastly in my mind and promised her that even if I was the only person who ever saw her potential, I would never give up on her and I would fight to the end. I was prepared for war. I listened to inspirational songs and videos to keep the faith. I also worried and fought and lost sleep and prayed. Oh did I pray, but it wasn’t that she would overcome. I always knew that you see. I always knew she had a divine purpose. I prayed for a team that would see Ashlynn like I do and help her fly.

    A couple of months ago, filled with gratitude, I nominated her SPED teacher for a district award.

    It’s called the Golden Heart Award and is bestowed to any educator in special education who has gone above and beyond for a student in the program. Because coincidences are the Universe or God’s way of talking to us, Colleen received notice she was awarded this honor TODAY – the day of Ashlynn’s IEP.

    I thought to myself,

    “Sounds about right.”

    Laura Smith, M.A. CCC-SLP is a 2014 graduate of Apraxia Kids Boot Camp, has completed the PROMPT Level 1 training, and the Kaufman Speech to Language Protocol (K-SLP). 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. 

    Purchase Overcoming Apraxia on Amazon.