Why I believe these 10 people with #cerebralpalsy are exceptional

RFTS2014-Ribbon-StarAre you ready for this? In honor of March 25 – Cerebral Palsy Awareness Day – I’d like to introduce you to 10 exceptional kids who have redefined what it means to break down barriers. They’ve torn the dis from ability and kicked it to the side.

First, let’s get through the awareness part: Most people with cerebral palsy, or CP, had a brain injury before/during/soon after birth. Some had strokes. Some had traumatic births. For some, we’ll never know what happened.

The encouraging thing is that our brains are plastic, meaning that healthy areas can eventually compensate for damaged parts. The challenging thing is that no one can predict how that might play out. People with CP can have dramatically different outcomes. Some of the kids featured here aren’t yet speaking. Some aren’t walking. Yet. But remember the secret I shared with you? Yes. That. We all have that in common.

In the meantime, different families wait for different things. We’re waiting to see if Bunz will sleep in his own bed. Make friends. Outwit bullies. Go to college. Drive a car. Have his own place. Produce cute little grandbunnies who disregard authority. (He says that will happen when he’s 15. Hmm. Here’s hoping for 30!)

Despite all of this uncertainty, one thing is for sure: People with CP are exceptional.

In the words of a wise woman:

Some people might look at Bunz and say, ‘This kid is delayed, so he must not have a very good brain.’ But I would say that this kid has an exceptional brain because look! Even with all of his physical limitations, he has figured out how to walk and move and talk and communicate. That’s not easy to figure out, but he did it. And I’m not sure I would be able to achieve all of that if I had started life with the same limitations. So I would say that his brain is even more exceptional than ours.

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Without further delay, here are 10 of the most exceptional friends, neighbors, and heroes a boy could have. And a few words about their amazing moms, who will always be my personal heroes.

Happy CP Awareness Day, from Bunz!


Exceptional Kid #1: Ella, age 10

11079276_10205388305101561_2059614904_nThe first time our physical therapist said the words “cerebral palsy,” she told us about Ella. How Ella didn’t let anyone stop her. How Ella wanted to play the harp, so she did. Ella wanted to ride horses, so she did. It didn’t matter that it wasn’t easy. You want to do something? You do it. Period. Back then, Bunz was a baby and we weren’t sure what to expect. How fortunate we were to share a therapist with such a determined little girl! Hearing about Ella’s hard-won triumphs was exactly what we needed as we embarked on this journey. Her mom writes:

“Cerebral palsy has taught us a lot about 11072690_10205388304781553_1823093690_ntrust. We need to trust that Ella will push through difficulties. That she won’t see us as nagging therapists but as loving parents. That her challenges will become her strengths.

At age 10, she’s been riding horses for 8 years and playing the harp for 4. We’ve discovered a whole community of supportive people and a world that not only accommodates difference, but needs just the kind of difference Ella brings. We’d get rid of CP if we could, and sometimes it’s really tough, but sometimes it makes a space for joy and appreciation that simply couldn’t have existed otherwise.”


Exceptional Kid #2: Bennett, age 11

“Bennett has hemiplegic cerebral palsy from a stroke in utero. This year he tried trapeze on our family vacation and was thrilled to do his own style ‘one-armed monkey hang.’”

IMG_3548That’s from Bennett’s mom. Let me just tell you, that woman is fierce. We met about a year ago – she happened to be touring a school when I asked how many of the K-1 students had individual education programs (IEPs). The principal replied, “None. We don’t worry about IEPs until the second grade.” I paused for a second. Let that sink in. Rewound, just to be sure. Did he just say …? Early intervention actually exists, right? It’s a Thing? Or did I imagine it?

I’d been planning to say something else, but my mouth hung open in disbelief. Audrey came over and gently closed it, then handed me her phone number. I crossed that school off our list.

Audrey writes:

“Life with cerebral palsy is joyful, exhausting, fascinating, trying, and inspiring for all of us in Bennett’s life as we watch him meet each day’s challenge with determination.”


Exceptional Kid #3: Nolan, age 3

Oh! Now look at this charmer. This is Bunz’ “little bro,” Nolan.

IMG953136You’d never guess it now, but Nolan had no independent movement – not even rolling – until he was 18 months old. What changed that? The question you should be asking is who changed that. A lady named Anat Baniel. The lady behind the exceptional brain quote.

Her center in the San Francisco Bay area attracts families of kids with CP, autism, chronic pain, you name it – from all over the world. She also works with top athletes, musicians and dancers to hone their skills. A couple of years ago, we raised money to travel to the center for 2 weeks and we were blown away by Bunz’ progress.

Every few months, Nolan and his mom travel to the center from their home on the Oregon coast. The cost is exorbitant, but when you find a therapy that helps your child as much as ABM has helped Nolan, you find a way to make it work. His parents had a fundraiser last year and ISTG I would have dropped $1,000 in their pot if I’d had it available.

Here’s a recent photo of Nolan at the ABM center. The photo is a little dark, but can you see? He’s taking steps! Soon he’ll be an independent walker. And a smooth one, at that! That’s the power of ABM.

IMG953500Here’s what his mom wrote. She’s incredible, by the way. And also a supermodel.

“This road that we’re traveling is not what we imagined before our sweet little boy was born. It’s so much more difficult. To watch him work so hard to complete what seems like a simple movement, to devote all of our time and resources to cutting-edge therapy … but then again, our path is so much brighter than we imagined. We’ve learned lessons about life, about ourselves, about the people around us and the threads that make this world unique. Every new milestone that he reaches fills us with pride!”


Exceptional Kid #4: Julia, age 12

Here’s a beautiful sixth grader named Julia. I’m always struck by how thoughtful she is, and I don’t just mean that she’s kind. She’s a thinker. A musician. A beautiful person, inside and out. Really great kid.

Her mom sent a few photos, so you can see for yourself.The Kids Are Alright

Julia and Isaac, Service-Dog-in-Training and rascally best buddy. Julia says having a service dog is one of the perks of having CP. While having a service dog means Isaac can go everywhere with Julia, it also means years of training with your pup. Kind of like trying to tell your baby brother what to do! One of the perks of having CP, for sure, but also one of the challenges!

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Being a stroke survivor and a kid with CP means getting the chance to “Play Ball!” with her city’s Little League Challenger division. Meeting celebrities like Lou Seal is an extra perk!

When Julia, with very limited use of her right hand and arm said, “I would like to play the violin,” her parents got together with her orthotist and figured out a way to make that goal possible. Julia is still studying and is now preparing for her first solo recital.

Photo by Betsy Kershner, 2013.

Julia & Beau 1Julia is the tallest, fastest girl around while riding Beau, the adorable Clydesdale. Julia rides other amazing horses, and while this is a fun and challenging activity for Julia, for her parents, seeing Julia riding tall in the saddle is one of the most healing, joyful experiences ever.


Exceptional Kid #5: Enzo, age 5

Now, here’s a little boy who owns my heart. He holds the deed and everything.

I met Enzo when he was only a few weeks old; Bunz was about 1. His mom and I had connected through a traumatic birth workshop. Our birth stories were so similar and I remember how rock-bottom we both felt. Another woman was taking the workshop, too; she was recovering from the emotional trauma of an emergency c-section. Well, let me tell you – after hearing our stories, that lady was instantly healed. It was a miracle! The thing I love most about Rebecca is that even in our darkest days, we could look at each other and laugh when that lady high-tailed it out of the workshop. Enzo’s mom is my kind of friend. And when I look into Enzo’s brown eyes, I fall in love every time.

Now I know what pain is.

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Now I know what love is.

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Now I understand the meaning of acceptance.

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Exceptional “Kid” #6: Ashley, age 28

My favorite exceptional adult (and kid at heart) has a few words for Bunz and other kids with CP:

FB_IMG_1426901355436“My advice would be to never give up, even when it is bad. My parents were told I would never walk or talk. If you know me, this is not the case at all (haha). Just because a doctor says something is likely to happen, doesn’t mean it will. Every case of CP is unique.

Some people might assume that you are not smart. When I tell people I am getting my Master’s, the blank stares are kind of funny. There are good days, there are bad days – it’s all about how you react.You will come across a lot of ignorant people, but the goal is to not let them get to you. You can either let the world win or you can put up a fight.”

Ashley’s mom, Ms. Gigi, was Bunz’ first mainstream preschool teacher.  I remember dropping Bunz off on that first day and hearing another kid say, “He walks slow.” It hurt to hear that, but the kid was right. What came next, though, was totally awesome: Without even skipping a beat, Gigi responded, “Yes, but he’s a really great singer!”

I didn’t know it at the time, but Gigi and I have a lot in common. When I finally met her daughter, Ashley, I had to hold back tears because I’m so proud of her. She really is incredible. Before we met, I didn’t dare hope that Bunz would attend college. Now I’m hopeful. We are beyond grateful for the wisdom they share.

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Exceptional Kid #7: Malia, age 9

Here’s another young woman, Malia, who attends a peer group for kids with CP that we were once part of. I love this group because until we attended our first meeting, it seemed like we were the only ones dealing with the challenges of CP. And then we walked in and saw our family multiplied by 10. It was such a beautiful thing.

Malia’s mom sent a few photos for us to admire:

Our happy angel

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Progress:  Malia could not stick her tongue out before – now she’s sticking it out there!

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Exceptional Kid #8: Lily, age 13

Here’s Lily, an inspiring girl who never loses sight of her goals. Her mom submitted a few photos to illustrate the true meaning of tenacity:

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“This is Lily getting fitted for a body brace. We still haven’t found funding for the brace, but this is the first time she’s ever stood up mostly independently!”

Below: “Lily works so hard everyday to move forward.”

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Exceptional Kid #9: Shane, age 5

334415_4456831913318_1382364317_oI’m only just beginning to know Shane and his family, but I have to tell you – there’s something completely heartwarming about them. For starters, Shane is an exceptionally bright kid. He’s going to do something spectacular in life – I can feel it. That’s what I’m waiting for.

Shane’s mom, Adrienne, writes:

“You might think that Shane is a big fan of the Giants. But no! He just loves to have his picture taken. 😉 I guess you could say he is a big flirt with the camera.”

The way that we met is really special, too.  It was New Years Day. Our family was having lunch at a “restro-naut” and Bunz was especially loopy – as it turns out, January was a bad month for seizure control. Convincing Bunz to eat makes me a little loopy, too.  I remember steering him through the crowded restaurant to the restroom and nearly running over one of the waiters. “I have a little boy with CP, too,” he said. Out of nowhere. It was the best random statement anyone has ever made. I’m with you. We proceeded to have the most productive 5-minute conversation possible, and then he brought Bunz a spillproof cup of apple juice. The rest is history.

10904083_10204860277461132_6639149655618478419_o“We are so proud of Shane’s progress. What a fantastic thing to see him stand so tall in front of the Christmas tree with his Dad. He is so amazing!!”


And last but certainly not least …

… our celebrity guest …

… get ready for it!

Exceptional Kid #10: Fireman Max, age 10!

max

Yeah!! I’m so excited to include Max in our CP Awareness post! I’ve been following his mom’s blog, Love That Max, since well … forever. Years and years. We’ve watched Max grow up. Type his own blog post. Become an honorary fireman. He’s such an inspiration for us – for Bunz and thousands of kids and parents around the world. Everyone loves Max.

His mom, Ellen, writes:

“My son doesn’t know the meaning of ‘disabled’—he just knows to figure out how to do things his way, on his own timeline. In other words, he rocks.”

To that, I say YES. Happy CP Awareness Day!

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