“We Still Run In Heart First”

posted Tuesday September 5th, 2017



I was right. Sophie is okay.

More than okay. She called me after school on Thursday — she’d learned that morning that she didn’t make the freshman cheer line — and before I could ask about that, she launched into a story about a boy she’s got a crush on. Over the weekend she showed off her dance moves on the beach, played with her cousins, ordered too much sushi, and quarreled with her big sister in the back of the car on the long drive home. Teenage girl stuff.

Once or twice she mentioned something about trying out for cheer again next year and instead of saying, “No fucking way,” I smiled and said nothing and waited for her to change the subject. Ditto for when she pulled up photos on her phone of cheerleader costumes for Halloween. Mature mom stuff.

Not that I’m much of a grown up. I’m still plenty pissed, mostly at myself — for thinking that Sophie would make cheer, for tossing her in to compete against her typical peers. But that’s not why I’m here. I wanted to share with you some of the incredibly insightful things other people have had to say in the last few days about competition, friendship, acceptance, and inclusion.

Typically, I don’t recommend reading the comments on anything. But I learned a lot from these. Mainly, how many of my friends on social media also tried out for cheer and failed. But other things, too. Including that there are lots of different perspectives on how inclusion should go down; that it’s not just kids with identifiable disabilities who are getting left out; and that maybe sometimes failure should be an option.

Some days, we’ve got to sit with the fact that we don’t have all the answers. Those are the toughest days. Which is why it’s nice to have so many smart friends.  Here’s what a few people had to say (feel free to visit my Facebook pages to read more –there are good comments on previous posts here on Girl in a Party Hat, too) when I posted about Sophie not making cheer and my feelings about that.

From Lisa, mom of Cooper, who is a sophomore in high school and has Down syndrome: 

I think for those of us with disabilities and raising kids with disabilities, it’s just a bummer that everything that provides good opportunities for socialization, exercise, teaming up, etc has to be competitive. It’s almost impossible to find inclusive opportunities once we or our kids reach high school – we can’t just play for the love of sport, unless we are segregated into disability-only programs.

….Another lingering thought…our kids are BRAVE. By definition, having a physical or intellectual disability means trying and failing pretty much every day, at every stage in life. People with disabilities have to give twice the effort and still don’t “measure up” to nondisabled peers. So the idea that failure is good for us/them doesn’t take into account the real and persistent inequities – big and small – that make up the human experience when your body or your brain work differently.

From Rachel, who is a special education teacher and Sophie’s beloved jazz teacher: 

Okay, don’t jump all over me for this, people, but is it possible that inclusion also includes being given the opportunity to fail? If this was a situation in which Sophie was the only girl who didn’t make cheer, I would be all over it, and I’m sure you would be too, Amy. But… wouldn’t we be just as upset if they put her on the team as their “Special Education mascot?” Wouldn’t that be infuriating, too? Just putting it out there. You know she’s one of my favorite humans on the planet. 

From Janee:

I’ve been thinking about this all night. I think when we talk about inclusion and inclusive practices its hard to imagine, but it’s so much easier when our kids are young. The heartbreak is not that [Sophie] didn’t make a team, but that as she gets older built in opportunities for inclusion get fewer and farther between. I have had this feeling of doors closing when our local softball teams got better and Ruby couldn’t keep up, when theater practice became too loud for her, when Girl Scouts became more mature. It’s hard for us moms to see how they will be included as this gap gets bigger. Just my thoughts. Big hug to you and Sophie!

From Laura:

My oldest has Muscular Dystrophy and tried out for cheer in 8th grade. She can’t jump, run, climb stairs and can’t raise her arms. My career was social service and had been “trained” in dignity of risk. I was gutted throughout the process regardless. (And many times before and since) It tears you up inside yet you smile and cheer those little ‘do anything’ spirits on. Cry in the closet later.

These experiences, for me, seemed unmanageable and yet here we are now, that little warrior and me, no regrets, battle scarred, powerful, experienced. We still run in heart first into adventures cuz we know we will survive whatever the outcome.

Jennifer, founder of our local Gigi’s Playhouse and mom of Kaitlyn, who has Down syndrome and recently graduated high school:

I have so many things to say about this. Kaitlyn didn’t have to try out…I made a phone call to the coach, asked if she would consider the possibility of having Kaitlyn on her team, we met and Kate was a JV cheerleader! Her sophomore year the Varsity coach wanted her….I was hesitant because she loved coach Jane…but Coach Dwayne was adamant. The next 3 years were amazing. For Kate, for her team, for the fans in the stands…it was inspiring. It was humanity at its best. It was young women learning how to hone their empathy and parents giving up the perfect image of what a cheer line should be and accepting it as something even more beautiful than they could have ever imagined. We traveled with the team to Worlds in Orlando and when the team sang “Lean on Me” before their performance they looked for Kate, called her over and held her in the circle. She rarely went to all practices…and sometimes only stayed for half the game. You wanna know who was more impressed than anyone though?!! Me! This was inclusion at its finest. It was leveling the playing field for someone who didn’t choose her diagnosis but wanted a chance to participate. It was coaches and admin bending to meet her halfway. It was young girls who instead of being bullies put their arms around her and chose her when they otherwise might not have had the opportunity….[So many people] changed our lives in ways that made me a stronger mother. That strength led me to open GiGi’s Playhouse [in Scottsdale]. I know you have had so many amazing experiences with Sophie. She is an incredible young lady. She did everything right…now we just need the world to respond accordingly. Love you both–hoping they change their minds. They have no idea what they are missing.

As I responded to Jennifer, I am not going to ask the cheer coaches to reconsider. No way. But I do kind of hope someone shows them — and every other coach out there — what she wrote.

The conversation about inclusion isn’t over. We can’t let it be. My friends won’t let it be. And neither will Sophie.





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Tags: Filed under: Down syndrome by Amysilverman

3 Responses to ““We Still Run In Heart First””

  1. What a beautiful piece of writing, exploring the question of inclusion in our culture. I love how this debate plays out with logic and love. I wish more of our cultural debates could follow this model. Inspiring to read this. Thank you.

  2. The opportunity to succeed is shadowed by the opportunity to fail. It’s having access to an equal opportunity that is most important for our kids (and us). The life lessons follow either way.

    ~BTL/ a dad

  3. These comments are incredible Amy!

    I love the story from Jennifer about her daughter’s cheer team. I love how Lisa pointed out that our kids have to be brave every day — they sure do; I have often thought this about my son. I love Laura, still running with heart first into so many adventures with her daughter.

    Thank you for sharing these and this whole story about cheer.

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