A ski slope, a girl, and global apraxia

• Laura Smith
• December 27, 2015
• Apraxia, apraxia blog, global apraxia
• 848

This year we spent Christmas in Utah with my husband’s brother and his family, and the day after Christmas we went up to a ski resort where Ashlynn could get a cheap lesson with the purchase of an adult lift ticket.  She has been only once before with us this year where we just had her practice getting the feel for it.

Even though she’s only six, I really try to add additional activities like this as I can afford them, because if there is one line that has really stuck with me in all of my learning and experience with apraxia, it’s:

Experience is the key architect of the brain

Especially, experiences and interventions that are done early while the brain is still developing.  When the brain is still developing, you have an opportunity to rewire the neurological pathways, just like we did with speech.  Ashlynn’s speech disorder is a motor speech disorder.  It stems from a motor planning issue, which is why it requires principles of motor learning. If we could get Ashlynn to speak clearly ( and we have), we can also give her the best opportunity to live a life where she can do anything she wants to do, global apraxia or not.  At least, that’s what I believe.

Therapies like OT and PT are necessary, but I also believe activities like swimming (which we have her in privately year round) and now skiing I know will all work together to rewire her brain.

We knew skiing would be a challenge.  It requires balance, coordination, and well, motor planning. You know, all the things she has a disability in.  That was okay with us. We’ll start early and hopefully skiing will help improve all of those things too, even if she can’t ski.

The first time we took her, my husband was so proud.  He must of carried her up a small hill close to 20 times and had her stay on her skis and just slide into his arms.  She fell a lot, but she was happy and smiling, and just the fact she could stay up a lot of the time too was amazing.  It’s amazing because we have seen her work so hard to do any gross motor task.  She was significantly delayed in walking, running and jumping.  Once she could walk she still fell CONSTANTLY and that lasted well into her third and fourth year of life.  Any terrain change or objects in her path, and she would immediately hit the pavement.  I don’t know what we expected for her first time, but I don’t think we expected her to be able to stand up at all.

We were wrong, and our hearts swelled with pride.

So back to this trip.  Her second trip.  We put her in a two hour lesson.

“Will you be with her?” I fretted.

“Yes, Laura.  I’ll stay with her,” Cody assured me.

He went into buy the lesson and came back out with a registration card and also informed me we would not be allowed to be with her.  Inside I started to panic.

“This card asks if there are any learning disabilities they should be aware of.  Should I put something?”

I blinked at him indredulously.  He’s usually the practical and realistic one about her disability.  Should he put something???  Was he joking?

“Yes you need to put something!  Our daughter has a disability in EVERYTHING that is required to ski!!”

“Okay, Laura.  Calm down. Just tell me what to put.”

I had him write down global apraxia, a disorder that affects balance, coordination, and planning motor movements; along with difficulty with attention and following complex directions.

I was still panicking.  We can’t leave her alone with teenage instructors! She requires professional teachers.  This was a mistake.  We should have looked up the disability program.  I know they have them because  a psychologist I worked with who taught me how to snowboard was also an instructor for the disabled population at a ski resort.

“Laura, stop helicoptering,” he said dryly, and just like that off my baby went holding her daddy’s hand.

I looked at my 3 year old son.  He was having a meltdown.  He has some sensory issues too, the exact opposite of Ashlynn though.  He is hypersensitive to things and right now he was screaming his new ski boots were too tight and he didn’t want to go skiing.

Sigh.  Dealing with him helped take my mind off of Ashlynn.

Cody came back in and said we will be able to see her class from the lodge.  Yes!  I raced up to find a seat.  Cody said they were teaching the kids inside first on some equipment.  I could go look through the glass.  I went downstairs and she had an instructor giving her 1:1 attention and she was happy.  Laughing.  My anxiety went down a little.  I was happy they were still inside.  It was literally around 0 degrees outside, and I was worried Ashlynn could get frostbite.  Due to her additional expressive language delay she doesn’t tell anyone when she is cold, but also her under-responsive sensory system doesn’t feel cold like we do.

Back upstairs, one of her cousins had already come back, cheeks red and feeling sick from being so cold.  Oh man. We’ll see how this goes when she gets out there.

Then I saw her.  I looked down from the second story of the lodge to see my little girl with her pink and black coat in line with the other kids.  Skis in hand she was marching in her ski boots through the snow.  I almost cried.  I was thinking about how long it took her to walk and how ANYTHING would throw her off, and here she was walking in ski boots that are already hard to walk in, tromping through snow that has varying terrain, and she was holding equipment that throws off balance.  She didn’t fall once and proceeded to get on the “magic carpet” that took her up the hill.

 

A kid in front of her fell.  My heart sank.  I knew she was next. I prepared myself for her to fall, and I watched this.

The first head in line by the cones is Ashlynn, standing on her two feet, riding up the magic carpet.  I blinked back tears.  It’s hard to describe if you aren’t a parent, but that is my heart in that pink and black coat.  I would die to protect her, and I was watching her spread her wings and fly, or ski, so it were.

I watched her until she rode out of view.

Meanwhile in the lodge, more of her cousins came back to warm up.  I kept staring out the window but never saw her come down.  I asked her 14 year old cousin where she was.  It was a spot on the other side of the lodge.  I raced over and looked out and soon my husband joined me.  It was a little ski area school with very small hills.  They were teaching the kids how to push their heels out to stop.  As I watched all the other kids go, I thought to myself I’d just be happy if she made it to the instructor without falling.  She fell a few times, but then, at the very end, after getting up at least 4 times……

….her heels went out and she stopped on her own.

Tears immediately welled in my eyes.  I looked over and my husband was literally crying.  Our hearts were leaping for joy.

We went back inside and I sat down.  I didn’t plan on going snowboarding this trip. For one, I just barely learned before Ashlynn was born and I fall a lot.  My muscles are always screaming the next day from pushing me back up so many times.  Second, I have really bad knees. Most people don’t know because they’ve been bad since I was 17, but they will just randomly give out on me and snowboarding is particularly hard on them.  It just didn’t seem worth the pain or embarrassment anymore.  My husband though had brought all my stuff this trip in a misguided belief he would be able to get me to go out on the slopes.

Well anyway, as I was sitting there I couldn’t stop thinking about Ashlynn.  She has a disability that makes her work harder than everyone else to ski.  She has fallen her entire life.  I can’t imagine.  She fell multiple more times trying to learn to ski, and yet she always got back up.  No temper tantrums, no tears, just her discreet determination.  What the hell was my excuse?  I don’t have a disability.  I may have bad knees, but it’s not a disability.

“Let’s go Cody.  I’m ready.”

He looked at me and didn’t skip a beat.  He said he had to go out to the truck to get my board and he’d be back.

I fell.  A LOT.  I fell so much that as I predicted, I’m in pain.  After falling at least 15 times I was frustrated and embarrassed.  How the heck does Ashlynn never get frustrated??  Again I thought, you don’t have a disability.  Get back up.  And you know what?  I had fun out there in the fresh air and beautiful snow-capped mountains spending time with my husband!

I have seen this meme on disabilities and it never spoke to me until today.

I realized today personally what that means.

I checked facebook and my nephew who is only 20 commented on my pictures that he was so proud of her, and that she teaches him a lot about fighting and never giving up. I teared up again.  When Ashlynn came back from ski school I read her what people had commented and she smiled and said, “Jerod say that to me?”  She looked so proud.

My husband told her he was so proud of her with tears in his eyes.  She replied, “yeah, but I fall a lot daddy.”

We both jumped in and gushed that everyone falls and it’s the getting back up part that counts.

She smiled and replied, “yeah, and we try again tomahyo (tomorrow).”

Yep Ashlynn.  That’s right baby.  When we fall, we get back up and we try again tomorrow.

So yeah, this Christmas I learned the only disability in life is bad attitude and if my daughter with an actual disability doesn’t use that as an excuse, neither will I.