A Mom's Humbling Advocacy Lesson
When is the last time you advocated for your child with disabilities?
If our lives are similar, it was the email 5 minutes ago alongside the 55 minutes you are currently spending on hold with the insurance company who denies speech coverage for your nonverbal teenager. Great job. You are a good advocate.
What if someone else advocated for your child?
Wouldn’t that be nice? Let’s let our minds go there. We have time. The insurance company isn’t answering our call anytime soon.
Imagine if someone saw potential in our children and raised the standards to such a level even we had to be convinced. Imagine if someone had so much experience and success that his/her confidence in our children’s ability made us believe in something bigger. Imagine if this someone would not back down until higher standards were not the end goal, but the starting line.
Such individuals do not exist though, right? We parents are the strongest advocates for our child. People tell us this all the time.
This was my long-standing belief until a weekend in Tahoe changed it all.
We were going to Tahoe and I wanted to find activities my daughter could enjoy. I heard of Achieve Tahoe, a nonprofit organization providing adaptive sports for kids and adults with disabilities.
An activity on their website, monoskiing, caught my eye. My daughter would be able to sit on a chair with a ski while an instructor guided her down the mountain. She would love this! I made the call to inquire and book a reservation full of confidence and pride in my ability to find this exciting option. Pat me on the back, please.
The conversation went something like this:
AT (Achieve Tahoe): “Hello”
Me: “Hi, I want to make a reservation for my daughter to monoski”
AT: “Tell me about your daughter. Can she walk?”
Me: “Yes, but short distances. She has hypotonia, balance issues, and fatigues easily.”
AT: “But she will be walking in the door? Not in a wheelchair?”
Me: “Yes”
AT: “Anyone who walks in the door can use two skis.”
Me: “Oh that won’t work for my teenager. Her needs are too high. She is nonverbal, in diapers, and very resistant to physical activity”
The conversation went like this for a while because I had to advocate for my child. Clearly, this person did not understand my daughter.
AT: “It sounds like you should go snowmobiling. We are not the place for you.”
Me: (shocked, what kind of customer service is this!!!) “I don’t think you are listening to what I am saying about my daughter.”
AT: “If she does the monoski rather than two skis, she will never want to try anything else. You are going to deprive her of something she can do and may enjoy because you don’t think she can.”
Me: (even more shocked) Speechless
Who was this woman? Did she just imply my expectations are too low?
Clearly, she wasn’t listening. At the end of the conversation, we compromised and scheduled for the ski lesson but with an instructor who also is trained in the monoski (because clearly that was how the lesson was going to end and I did not want this to be a waste of time).
Good for me. I’m such a good advocate.
Leading up to the day Miranda would ski (Ha! Right!), I was contemplating canceling. After all, I have been told over the years I know my kid best and am her strongest advocate. Do we really need to put Miranda through this so I can get another gold star?
The day of the lesson arrived.
It is 9 degrees and windy. Snow is falling at a steady pace and while renting skis we are told, “You guys are hardcore to ski in this today”.
Can we call this ridiculous thing off? I mean, come on, we can’t even get Miranda to put on the helmet and ski boots at the rental fitting. Rather, we make an educated guess of boot size and I leave with reaffirmed confidence in how right I am in that my kid is NOT going to do this, much less like it.
Nonetheless, we arrive and meet the ski instructors.
I am happily munching on a crepe from the food truck outside while they spend time with Miranda. I notice how intently they observe her. They are getting a feel for who she is before gently weaving themselves into interaction.
It is clear they are highly trained and even use some ABA techniques to get her helmet and ski boots on. They have Miranda outfitted in less than 5 minutes. At the rental, we tried for 15 minutes without success.
Okay, I’ll give them credit, but still, there is no way she is going outside in that blizzard to ski. Can I have some coffee with my “I told you so” crepe, please?
Dad, Sister, Grandma, Grandpa, and I all clomp out into the snow with Miranda and her three instructors.
We are out there 5 minutes and these wise instructors tell us “Now is the time we suggest families retreat.”
Oh. Okay. Like, go away? Like, maybe you can do this better without us?
Sure, good luck. It’s cold out here anyway and my coffee needs a refill. We obediently retreat and huddle around a small window taking turns watching.
Before I have a chance to mix the creamer, my younger daughter exclaims, “Miranda is sliding her skis back and forth!”
Wait? What?
Move over and let me peak through that window. By golly she is! We erupt in celebration. We are still high fiving each other when Keegan, her lead instructor, comes running in to grab a contraption. He looks at us, smiles, and says,
“I will need this when we get off the chairlift”
Wait? What? The chairlift that is 20 feet above ground and takes skiers to the top of that slope out of my sight?
“We should be coming down in about 25 minutes,” Keegan says as he runs out the door.
Sure enough, they attach Miranda and her skis to the contraption and glide her across the snow. She is gliding!!! She is on the chairlift!!! By now Team Miranda is an eruption of celebration. As far as I’m concerned this day is already a huge success.
It is during the 25-minute wait, I meet the woman who took my phone call, the woman who advocated for my child and believed in her when I did not.
The woman who would not lower standards for what she knew my child could achieve.
She is in a wheelchair and is an expert level monoskier who, I am guessing, has had plenty of practice in the advocacy department. She is the woman who said, “If she walks in the door, she uses two skis.”
Her name is Marina and she is now absorbed into Team Miranda.
In fact, she is the leader of Team Miranda. Not only is she included in every high five but she was the one who had the vision of this moment from the start.
Marina is THE reason Miranda is achieving something I doubted. Marina is THE reason I have begun to recalculate everything I have decided about Miranda’s future.
When Miranda came down the slope she pointed to the lift. She wanted to go again!
Keegan took off the contraption and hooked a pole to the front of Miranda’s skis.
Wait? What will she hold onto? She has low muscle tone, she can’t balance well, remember?
It takes a moment and a confident high five from Marina for these doubts to clear as Miranda and Keegan are swept away in the lift for another run.
Like clockwork, down they come 25 minutes later with Miranda perfectly balancing on 2 skis with Keegan using the pole to steer. She is skiing!
Keegan continued to stay attentive to Miranda after they came inside. This was easily the longest she had ever stood, not to mention while on skis.
I am dying to know what Keegan would have done on ski run #3 but the weather conditions made us parents call it a day (good thing Marina wasn’t around...she probably would have said, “go again!”)
Thank you, Achieve Tahoe for the celebration you brought our family.
Thank you for the smile and pride you brought to our daughter who knew she did something spectacular.
Thank you for the gentle way you tended to and encouraged both Miranda and her family.
Thank you for believing in our child and teaching us we can dream bigger and bolder. We will see you on the slopes again next year!
To learn more about Achieve Tahoe, click here.
