SLP Mommy of Apraxia

Category: developmental coordination disorder

Learning to swim means facing our fears

Ashlynn is 14 years old. It’s almost unbelievable to me that a decade ago, an entire TEN years ago, we almost ended up a tragedy. It’s so traumatic even now I can never re-read the post. I‘ll link it here, but I’ll never re-read it. I don’t need to. It’s forever branded on my brain like a tattoo. She was four at the time. I still don’t know if she remembers it. If she does, I have no idea if it affects her. However, I have my theories.

After the incident, Ashlynn did get back in the water. We all knew how important it was long term. I remember writing another post about that. I won’t re-read that one either. Learning to swim is such an important life skill. We kept on keeping on.

After the incident, she never attended group lessons again. I hired the swim instructor and paid him privately for at least two years before the pool policy banned private swim lessons. I then switched her to recreational adaptive swim teachers. It seemed to be working, but then COVID hit.

During COVID in 2020 through 2021, my husband and I booked hotel rooms as “outings.” We always chose ones with pools and tried to teach her ourselves. She had so many successes, but nothing carried over.

My husband and I are water lovers. It’s weird to say because we live in the land locked state of Colorado. However, we find home at our “Colorado beaches” aka reservoirs. We spend our summers at campgrounds that have lakes attached to them so we can play on our jet ski.

Ashlynn, even at an older age is VERY good about wearing a life vest. She doesn’t fight or argue, but still. She doesn’t know how to swim.

This year, a client of mine who is her same age started Special Olympics swimming. His mom gave me all the info and I signed Ashlynn up. I wasn’t sure it was going to work. The coordinator was concerned she doesn’t really know how to swim and was worried about keeping her safe. She said the option of a 1:1 helper wasn’t available.

I understood. Ashlynn is 14 now. Even specialized swim schools won’t take her because of her age. I left that night feeling defeated. We had helped Ashlynn triumph through soo much! Riding a bike! Reading! Getting on stage! Dancing! Learning to swim just didn’t seem to be in the cards.

I emailed afterward and she told me to come back. She said she re-arranged some swimmers and had a plan to keep everyone safe. We showed up tonight, and there was a woman who had a son who was swimming independently and while she was watching she volunteered to help keep any other swimmers safe. That woman was assigned to Ashlynn. I could breathe. I felt my anxiety disappear, and honestly I think my anxiety holds Ashlynn back. She constantly ‘checks in” with me and if I don’t look completely relaxed, Ashlynn panics.

Life is so serendipitous. As I watched my daughter with this woman a man with his child came up to take their picture. The man literally works in the SAME office building as my speech therapy practice. I was filled with awe at the Universe and then INSTANT gratitude. What were the chances?

I KNOW Ashlynn can learn to swim. I KNOW it. It’s been a long, hard and complicated history. However, I KNOW she can. This is her year. Love you girl. I’m your biggest fan.

Love,

Mom

April 3, 2024
Dyspraxia Dancing Queen at Thirteen

Long ago before I knew terms like Dyspraxia, or Developmental Coordination Disorder or Dystonic Cerebral Palsy, I knew my daughter was falling behind in her developmental milestones. She only “army crawled” and nine months and didn’t fully crawl until well after a year. Learning to walk seemed like a pipe dream goal. I would observe on social media other people’s babies learning to walk and crawl so early. I would feel an initial mix of awe with an immediate sinking feeling of despair. Why couldn’t Ashlynn do these things? I was even a THERAPIST. Granted a SPEECH therapist, but I had worked alongside occupational and physical therapists. Why was she so behind??

This was a video taken of her around 15 months. We had bought her a “walker” to help her stabilize and learn to walk. She never ever gave up but it broke my mama heart. Her legs are weak. They literally seemed to give out beneath her. Yet she smiled looking up at me with that positive attitude and unbreakable determination.

Ashlynn did learn to finally walk at around 19 months. However, she would remain unsteady on her feet and any incline variance would threaten a potential fall or crash. Every gross motor skill a child learns thereafter Ashlynn learned with the help of physical and occupational therapy.

In school plays, even if Ashlynn could overcome the dyspraxia and learn the dance moves, her ADHD and SPD sensory overload had her usually standing the whole time and just watching everyone else. I watched her at school dances, monster balls, and school plays with tears in my eyes because she wasn’t able to participate like everyone else.

Fast forward years ahead. We were at a wedding tonight. Ashlynn is 13, two months shy of 14. She has never had formal dance lessons and honestly PT is spent stretching out her tight muscles and OT is spent helping her complete daily living tasks in the home. That’s why tonight was so amazing.

Ashlynn danced her heart out not only keeping the beat to the “Cupid Shuffle,” but also DOING the cupid shuffle!

An Imagine Dragons song lyric popped into my head “I’m an apostrophe, I’m just a symbol to remind you that there’s more to see,” and I started thinking developmental delays are much like this. They may have taken a more unconventional route, and it didn’t look as clean as formal as the original, but they did things their way and the outcome is the same. In fact, I might argue, the outcome is even better. I’ll leave you, reader with another lyric from that same song,

“I’m just a product of the system, a catastrophe, and yet a masterpiece.”

At the time, due to my conditioning of the “system” in which we live, Ashlynn’s diagnoses seemed like catastrophes. I was honestly and embarrassingly now, devastated. How silly. If only I had know then what I know now, those differences are what makes her a unique and unparalleled “masterpiece.”

Keep dancing my dyspraxia queen. You’ve earned every step.

August 14, 2023
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.

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.

July 24, 2023
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.

She literally smiled the entire time. Even while running.

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

September 14, 2021
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.

March 10, 2021
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.

August 11, 2020