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.
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.
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.
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.
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.
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.
