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.
