Why I Believe These 10 People With Cerebral Palsy Are Exceptional

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Are you ready for this? In honor of March 25 – Cerebral Palsy Awareness Day – I’d like to introduce you to 10 amazing 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: Many people with cerebral palsy (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 in a previous blog post? Yes. That. We all have that in common.

In the meantime, different families wait for different things. We’re waiting to see if our 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 this uncertainty, one thing I believe is this: 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 would say 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. I’m not sure I would have been able to achieve all of that if I’d started life with the same limitations. So I would say that his brain is exceptional.

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!

Ella, age 10

11072690_10205388304781553_1823093690_n The 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 trust. 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 eight years and playing the harp for four. 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.”

Bennett, age 11

img_3548 “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.’”

That’s from Bennett’s mom, Audrey. Let me tell you, that woman is fierce. We met about a year ago – she also 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. 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.”

Nolan, age 3

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

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You’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 two weeks and we were blown away by Bunz’ progress. We didn’t want to leave. So, we didn’t.

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 this has helped Nolan, you find a way to make it work.

Here’s a recent photo of Nolan at the 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!

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Here’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!”

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. She writes:

“Julia says having a service dog is one of the perks of having CP. While having a service dog means her pup, 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! Screen Shot 2015-03-25 at 11.22.51 AM

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

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When Julia, with 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 is the tallest, fastest girl around while riding Beau, the adorable Clydesdale. 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.”

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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 Enzo’s mom is my kind of friend. And when I look into Enzo’s brown eyes, I fall in love every time. His mom writes:

“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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Ashley, age 28

fb_img_1426901355436 My favorite exceptional adult has a few words for Bunz and other kids with CP:

“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.

Malia, age 9

Here’s another young woman, Malia, who attends a local peer group for kids with CP. 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.” mg_3462

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

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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!”

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“Lily works so hard everyday to move forward.”

Shane, age 5

I’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 writes:

334415_4456831913318_1382364317_o “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 we met is really special, too. It was New Year’s 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 five-minute conversation possible, and then he brought Bunz a spill-proof cup of apple juice. The rest is history.

“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!”

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And last but certainly not least…

Max, age 10!

I’m so excited to include Max in my 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.”

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

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The Moment That Taught This Teacher a Great Lesson About ‘Best Work’

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In the Pre-K classroom at our school, we have a “My Best Work” board. The children get to display any work that they are proud of to place on the board for everyone in the class to see. Our board is filled with everything from letter of the week zebras and the goldfish counting tank to name trains.

But today, we learned that “My Best Work” doesn’t always involve paper and color crayons.

In our class, some students with differing abilities get to select a peer buddy, sometimes only through hand gestures. This is a much-coveted job in the class.

“John” was selected to be the peer buddy for “Lewis.” John is a very good peer buddy; he loves being selected, and he takes the job very serious. Today was no different.

He sat by Lewis at each activity, and they played outside together and ate lunch together. Today during circle time, I looked over and Lewis was in his tumble form chair and John was right beside him. Lewis loves to rub and touch and sometimes pull hair a lot! Some children move away and don’t like to have their hair touched. I looked over and Lewis was rubbing John’s  hair and John was sitting there smiling. He knows Lewis loves this! Lewis then put his arm around John. I took a quick snapshot to add to the class yearbook. I printed out the picture.

One of the teachers showed John and Lewis the picture and said she was so glad they were both good friends. Then I overheard the following conversation.

“I want the picture of me and Lewis on the ‘My Best Work’ wall. Being a peer buddy is fun and work. I get to help make sure Lewis and I do everything together and Lewis doesn’t get left behind ever. No one gets left behind in our class” and then he made the sign language sign for sticking together.

“Lewis is my friend. He likes rubbing my head. His leg muscles don’t work as well as mine do so I get to help him. That is my best work. Can I put the picture on the board?”

The teacher and I then smiled a big smile with a little tear in our eyes and proudly told John that anything he thought was his best work can always go on the board.

Then we both gave John a hug and told him it was his best work and that sometimes our best work doesn’t include crayons or paper. He walked over and hung up the picture.

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Cerebral Palsy Made Me the Strong Woman I Am Today

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Dear Cerebral Palsy,

It took me a little while to fully grasp how you challenge and affect my life daily. I always had you. I just never knew what you were capable of or what paths you would lead me down in life.

At 19 years old, I can absolutely say I am not ashamed of how you may have changed my life and how you cause me to do some things differently from others. Cerebral Palsy, you’ve been a gift and have given me such a well-rounded perspective on life. I thank you.

But this has not always been the case. I have left sided hemiplegia, which means that only the muscles in the left side of body are affected by this neuromuscular disorder. I have never known my life any different than just having to learn how to adapt to certain situations more than other people do. I grew up compensating for my weaknesses by favoring my right side (as an aspiring physical therapist I am mentally yelling at myself for not giving my left side more challenges when I was younger, but young kids will be stubborn).

Like most people with CP, doctors do not ever promise a good prognosis. It must have been scary for my parents to hear that their daughter may never walk or have the ability to use the muscles in her left arm. I can’t even fathom how I would feel in that situation if I could have understood my circumstances then.

Starting from a young age, I liked challenges. I like proving people wrong. I learned how to walk when I was 3 years old. I have never known a life different than being a little more “spastic” than others: tripping over my own two feet all too often, and scraped knees and elbows being a signature look for me growing up. The term spastic refers to the type of CP I have- spastic hemiplegia on my left side: so when people call themselves or others a “spaz,” chances are you’re really not and you couldn’t possibly understand what it is like to lose control of your movements at times or not be able to get your muscles to work when you want them to.

The muscles in my left forearm, hand, and wrist were so weak when I was a child that my wrist would be curled up to my shoulder for most of the day until the wonderful time of day hit when I had my occupational therapy exercises. I began treatment with some of the best pediatric occupational and physical therapists in the U.S. at 18 months. I have to acknowledge the brilliant doctors, therapists, and eventually surgeons I have been blessed with being treated by. Without their compassion, their advocacy for my bright future and their knowledge of their medical specialties, I would not be where I am today.

I would not be a sophomore in college studying to be a physical therapist if it was not for my parents’ continuous support of everything I pursue in life. My father has been my coach in every sport I’ve played (and yes – I did play sports along with my “abled-bodied” friends!). He has always been there to give me the toughest love and has always encouraged me to follow my passions.

I attended regular school my entire life. I wore a plaid uniform to school every day with knee-high socks. But I wore a leg brace that would support my ankle and run the entire length of my calf, and most of the time I wore a wrist brace. I have never filed for any kind of government assistance, as is the case for many people in a similar situation to mine.

Because I was brought up in this so called “normal” culture, I did not notice my differences very much when I was young. I grew up attending school with the same people from kindergarten through eighth grade. I grew up with them, nobody ever seemed to mind my differences (but that would change as I transitioned to high school), and like I previously stated: I never knew anything different.

“You are retarded.” Those words still sometimes creep up on me every now and then. It wasn’t until high school that I really started to resent you, Cerebral Palsy. High school was a completely different environment. Those words and the actions of others ultimately caused me to lose a lot of the friends I thought I had. As painful as I that time in my life was, I look back on it now knowing it has made me a stronger person. I had a lot of anger built up toward the people who were saying nasty things about my body and how I lost my friends along the way.

Those words caused me to hate my body, my circumstance, and at this point in my life I sought surgical consultation from two very brilliant doctors. However, surgery is not a cure for CP. I still have some limits in mobility and function. And I always will. Most days I am not bothered by my condition or thinking about it too much. But there are many times when I must catch myself before I lose my balance, or my leg goes numb, or my wrist goes limp. And then I remember: I’m a little different. But I’m okay.

Four years after that seemingly life-shattering day in sophomore year, words can still trigger certain feelings of self-doubt on a smaller level, but I ultimately know that that falling out was for the best because I found out who was really there to support me. Although I have not stayed in contact with people from my high school, I wish them well, and if anyone ends up reading this, please know I forgave you a long time ago. Your misunderstanding of who I am as a person has caused me to ultimately rely on myself for happiness and the negative experience I had only wants me to help better the lives of children with disabilities all the more. I have my life all figured out. I hope you all do, too, and I am wishing you all the best.

So yes, CP, you have brought some unwarranted obstacles into my life that were never expected and could never be detected in any sonogram. But, without you, I would not be the strong-willed woman I am today who wants to make a difference for others and show them that their “disabilities” should be embraced and not shamed. I am a certified spinning instructor; I love challenging others beyond the limits they think they have. You are so much more than your limitations. Please know that.

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I am currently advocating for the abilities of all people. No one should be discouraged by a diagnosis at any age. You are so much more than what you perceive as your limitations – whether they be physical, mental, emotional – everyone has issues. Empower yourself. Embrace your obstacles. Create a brighter future for yourself.

Cerebral Palsy, I see bright things in my future because of you…

Much Love,

Jessica Paciello

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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The Keen Senses of a Boy With Autism May Have Saved a Man’s Life

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Chase Faulingham was out walking with his grandfather in their neighborhood in the Halifax area of Nova Scotia, Canada when he heard a noise. The 5-year-old, who has autism, has only just begun to speak, but when he sensed something was wrong, he used his communication skills to compel his grandfather to stop. Even when his grandfather didn’t hear anything.

He heard a noise, and he said, ‘Stop,’ so we stopped,” Thomas Murray, Chase’s grandfather, says in the video below. “I didn’t hear anything, so we took a couple steps forward. [He said,] ‘No, Poppa Jim, listen! Listen! Help!'”

Turns out, Chase really did hear something. He and his grandfather climbed up a snowbank that had piled on the side of the road to find an injured man lying semiconscious on the other side, CTV News reported. They called an ambulance and waited with the man for it to arrive.

Chase’s community is hailing him as a hero, but no one is more proud of him than his mother, Jamie MacKinnon. “People, when they see a special needs child, seem to put limits on him,” MacKinnon says in the video below. “It just goes to show that he’s a healthy little 5-year-old boy.”

Hear more about Chase’s story in the video below.

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What I Hope for My Sons and Their Lives Together As I Get Older

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I don’t ever remember thinking, Will Neil and Jeff resent the time and energy Matt requires? Will they feel like they have had a diminished childhood because of having a severely disabled older brother? It never crossed my mind. Getting enough sleep to have the energy to keep up with 3 boys – now that crossed my mind, often!

Now Matt is 28, Neil is 24 and Jeff is 20. Matt lives at home with Mom and Dad, and Jeff likes to accuse him of being a lifelong “moocher.” Neil is the definition of a struggling actor in NYC, going on auditions, acting in small plays and independent films, and waiting tables to keep a roof over his head and cheap pizza in his stomach. Jeff is the definition of a struggling college student, trying to recoup that GPA from his freshman year of fun, studying, delivering pizzas for gas money, and living the high life in a dormitory.

Some parents of children with special needs find it difficult to balance the needs of their “typical” children and their child with needs. I’m not saying it was easy, but life was so busy and full during those first 20 years of parenting that I don’t remember wringing my hands about Neil and Jeff needing therapy later in life due to my inadequacies.

I knew from the beginning that Ed and I were never going to be perfect parents, and I often reminded all three of that! Neil and Jeff learned that they were loved, cherished and part of a family unit. If we screwed up in a parenting decision, we admitted fault and apologized, but we never apologized for any part of Matt being in their lives.

Early on, I let Neil and Jeff know that every person in this family had a part to play. No one was more important than the other and we help each other in this family. I didn’t use them as “slave labor,” but when they were old enough, I definitely would ask them to fetch me a diaper or wipes, or change the TV for Matt.

I think that sibling relationships are the basis for how we treat others in life later on. If we let our children think that the world did not revolve on its axis until they were born, then that’s not love, that’s setting them up to be whiny, self-centered pains in the butt.

If someone felt unhappy in this family, Matt was off-limits for being the reason… too easy a target and truthfully, how could a severely disabled person wield that much power? Instead, those feelings were addressed and analyzed, and plans were made to change or adapt.

But seriously, I don’t ever remember my boys complaining about Matt. As they told me often, “He’s just Matt. I can’t imagine him any different.” Pure, simple brotherly love. We are not a whiny family. If there is any “whine” in this house, it’s usually a Chardonnay or Merlot!

Sometimes Matt was the most demanding, while other times Neil made us wonder how much more gray hair we could grow, or it was Jeff giving us heart palpitations. “Typical” children challenge your life, too, but in different ways than your child with special needs. We have jokingly stated that with Matt, at least we know where he is at all times and who he’s hanging out with and what they are doing… the same can’t be said for the other two! But seriously, our boys have been delightful and not too wacky; no jail time for either!

We’re at a later point in life, and we think about future plans and how typical siblings fit into that. Each family is different, so for our family and our boys, we want them to be kind, productive, adventurous and compassionate. I pray that they have purpose in their lives, not just about their desires, but also about helping others.

It is mine and Ed’s responsibility to plan for Matt, and I hope that Neil and Jeff will be a part of his life. I will not force them or guilt them into promises that will crush them later. They have learned so many lessons already and have taught us and others from their experiences. They love Matt unconditionally, and they treat him like a young adult brother, giving him grief and giving him hugs.

We won the lottery with these three young men, and we are so grateful for the love they show to each other, to us and to the wide world they are stepping into.

Go forth, Brown boys. You have wings that are ready to take you to places unknown.

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He Came Up With a Wheelchair Challenge. It Landed Him in the White House.

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Archer Hadley was stuck outside the front doors of his high school in Austin, Texas on a rainy day last fall. The 18-year-old has cerebral palsy and uses a wheelchair, so some tasks, like opening heavy doors, are difficult for him. As he worked to pry open the school doors just enough to slip inside the building, he realized how he could make his high school more accessible — he would work with the school on installing automatic doors at three of its entrances.

When he was told the doors would cost $40,000, Hadley created the “Wheelchair Challenge,” a fundraiser where students at Austin High School challenged each other to spend one full day in a wheelchair. When a student challenged someone, he or she paid $20 to go toward building the doors. His project caught on, and people who don’t attend the school began sending in donations. Hadley raised more than $87,000, enough to make every entrance at Austin High School more accessible for students using wheelchairs, KXAN News reported.

Meanwhile, some of Hadley’s classmates were catching his story on camera. They compiled his project into a short documentary, The Archer Hadley Story, which was among 15 student-made films selected from more than 1,500 submissions to screen at the second annual White House Student Film Festival, Disability Scoop reported. Festival submissions all focus on service and giving back to the community. President Barack Obama honored the students’ efforts at the White House on Friday, March 20. Hadley and the students who made the film attended.

“Archer is giving back to his community by providing the ability for students, faculty and any visitor who comes to our school to feel welcome,” Nicole Griffith, Director of the Academy of Global Studies at Austin High School, says in the documentary below. “This project is going to help the community for years to come.”

Watch the entire documentary about Hadley’s project below.

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