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Blind to Limits

On any given day, you might find Daniel Stickney surfing or scuba diving in the Pacific Ocean, participating in his college’s student government, or assisting engineers to make technology more accessible. He’s traveled the world and learned new languages. You could say the 22-year-old has a great life, that he holds the world in his hands.

The fact that he can hold anything in his hands is little short of a miracle, considering that shortly after his birth the doctors told Danny’s parents that he had cerebral palsy and would likely live his life in a fetal position.

“Daniel is a gift from God,” says his father, Dyer, a single parent who made it his mission to do whatever he could to help Danny live as independent a life as possible. Finding little help close to home, Dyer expanded that mission to other parts of the world in search of therapies that would prove the doctors wrong. Thanks to intense physical therapy at a young age, Danny is able to use his hands well enough to do many things others with his disability can’t.

Yes, I’m disabled, and…

Danny’s disabilities are merely conditions, hardly limitations. When I first sat down to talk with him and his older brother, Stanford, I asked Danny to tell me about his disabilities. He told me that he is legally blind due to cortical visual impairment, which limits his vision to a periodic sliver from the edge of his right eye.

I expected him to talk about his CP, so I prompted him for more. I got silence.

Stanford explained that Danny was raised without awareness of his disabilities. It wasn’t something he paid attention to until fairly recently. Stanford explained that their father refused to let any of the children’s limitations prevent them from participating fully in life. The focus is always on what each member of the family can do, not what they can’t. Never why, always why not.

Stanford then prompted Danny to talk about his CP, and Danny spoke briefly about his use of a wheelchair. He quickly shifted the conversation to how much he enjoys speaking with people in retirement homes to help them make their own transition to using a wheelchair. The more I tried to get him to talk about himself, the more he talked about how he loves helping others.

Danny is also a “big man on campus” at the College of Adaptive Arts in San Jose, where he takes classes and is vice president of the student government. When he’s not in school, he gives a lot of his time volunteering with various organizations. He is currently a board member for the California chapter of TASH, a disability advocacy organization, and was a featured speaker at its 2015 national conference.

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Danny navigates a sidewalk in Los Gatos, CA, during filming of “A Day with Danny” for the Google Accessibility Team.

Shaping tech access

Like any “millennial,” Danny loves technology. He and Stanford had the opportunity to hear Charles Chen of the Google Accessibility Team speak at the Vista Center Blind Expo in Palo Alto, CA, about the work the team was doing to make technology accessible to everyone. They chatted with Charles afterward and soon were meeting with the team and testing a variety of equipment and applications designed to help the visually impaired and people with limited or no fine motor skills access technology.

Danny was also featured in a Google Accessibility documentary called “A Day With Danny,” which was used internally and to promote the company’s Google Impact Challenge: Disabilities program, through which it is donating $20 million to 29 non-profits that are using technology to address a variety of accessibility challenges.

A better wheelchair

This summer I spent an afternoon at Danny’s home in Los Gatos, CA, to observe what Danny called a “Makeathon.” A group of young engineers and creative problem solvers lived with Danny and his family for a week to observe him and develop ways to help him in his daily life.

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Danny and his brother, Stanford (back row, left), take a break for a group photo with the “Makeathon” engineers.

By the time the group departed, Danny had a wheelchair equipped with infrared sensors that alert him to obstacles and dangers as he moves about. The engineers used existing technology to design a new type of detection system that alerts Danny when he nears stairs or other potential dangers. They will share what they learned in the open-source community in hopes that others will take their information and adapt it to solve other problems.

Two of the engineers, Stephanie Valencia and Tomas Vega, are co-founders of Assistive Labs, a “global team of dreamers and doers” working to “increase access to assistive devices for people living with disabilities in global markets by collaboratively building adapted and affordable devices” in the areas of health, education, communication, and mobility.

(I will be writing specifically about the “Makeathon” and Assistive Labs in a separate post, so stay tuned. And I hope to include video of me driving an early version of Danny’s retrofitted wheel chair. Too funny to miss!)

What’s next?

Danny views his future as limitless. He wants to continue his advocacy work for people with disabilities, particularly those who are visually impaired or who use a wheelchair. “I love to be involved in the community,” he says. “When I get a chance to help people with disabilities, I try to make life better for them.”

“I want to make it clear that even though I’m in a wheelchair I’m still a human being,” he says. “Anything I think I can do, I can do.”

Hello, Officer!

I’d been cleaning leaves out of the gutters on a recent Saturday morning when the police showed up at the house. They’d received a 911 call from my cell phone, which I’d left on top of my dresser in the bedroom. The caller hung up and no one answered when the dispatcher called back.

Christian!!!

Son #1 loves cell phones. He doesn’t have his own, so he grabs any he finds laying around and starts playing. Mine unfortunately has easy access to the “emergency call” button, so the local 911 dispatchers are getting to know us pretty well. Just in the past 6 months I’d guess he has done it at least five times, sometimes chatting with the dispatcher until we intervene.

And he doesn’t just call 911. Our friends, coworkers, and dozens of other people on our call logs have received random calls from a boy who is hard to understand. Those who know us and Christian laugh it off, but 911 dispatchers are a different story.

A few months ago, C rang up 911 and was babbling to the dispatcher when my wife walked into the room, scolded him, took the phone from him, and hung it up. She didn’t know he had called 911, and I answered when the dispatcher called back a couple minutes later.

When I explained what had occurred, she very sternly explained that it is concerning to the police when the caller hangs up, particularly when someone is yelling in the background. Fortunately, my explanation and sincere apology were enough to avoid a visit from Concord’s finest that day.

police-car-drawingThe Wanderer

The last thing I want to do is distract the police from their important work because of a phone-happy boy with special needs. Numerous times, in nearly every community where we have lived, that important work has involved searching for that same mischievous boy. You see, Christian likes to wander.

From the time he could walk, he’s wanted to explore. At four years old, on a chilly December Sunday morning, he and brother Ben were playing in the fenced back yard of our hillside home on the edge of Kennett Square, PA. After a little while, Ben came in, wandered around for a few minutes, then asked, “Where’s Christian?” Sarah and I bolted off the couch and ran out back to look for him, finding only an open gate.

We panicked. Sarah went into the house to see if he had come inside undetected, while I ran to the front of the house to search. I didn’t see him, so I ran around the neighborhood, down the hill to the usually busy road at the bottom and through yards, yelling his name. He was not inside, so Sarah called the police.

My mind was racing with worst case scenarios. I got in my car and began driving all around the neighborhood. As the minutes went by I became more and more panicked. We might never find him. Someone might have taken him. He’s probably scared to death. My heart was exploding and my adrenaline was raging.

Downhill All the Way

I went back home after about 10 minutes. Sarah had just gotten a call from the police. They’d found him… nearly a mile from the house.

He’d walked down the sidewalk to the road at the bottom of the hill, turned right and left town. He walked along the curvy road with no shoulder, a hill on his right and a wooded creek on his left, all the way to the next crossroad where a couple saw him and stopped. They called the police at about the same time we had.

In a few minutes the squad car pulled up in front of our house. Two young male officers got out and opened the back door. When C climbed out, Sarah broke down and ran to him. I held it together, but could barely speak to the police. We thanked them over and over.

Christian was all smiles, completely unfazed by the experience. He got to see new places, meet new people, and ride in a police car. What’s all the fuss?

I still think about that morning and how fortunate we were. He could have been hit by a vehicle. He could have fallen into the creek. He could have been taken by someone.

Thank God it was a Sunday morning and there was very little traffic on the road except for the kind couple who found him. I wish we could have thanked them personally.

From then on, I always confirmed that the gates were locked before letting the boys into the yard. We also have added multiple locks to exterior doors in each subsequent house, high enough that he couldn’t reach them. But doors are only so tall and kids grow so fast… and parents sometimes forget.

Exploring California

When Christian was almost five, we moved to Grover Beach, CA, into a nice neighborhood with a park just a block away. Within a few months, we met the local police. C loved that park, so at the first opportunity, the first open door, he went there… alone. Someone called the police and I got to the park at about the same time they arrived. I and they were not happy, but C was.

He flew the coop several times in the three years we lived there. We had become friends with another neighborhood family with young kids, so that is where he typically headed. A couple times he got sidetracked by an open vehicle parked on the street or an open garage door at a home along the way. We met several neighbors that way.

On one solo outing, he came across a group of women engaged in door-to-door ministry for a local church. They asked him where he lived and he pointed to our friends’ home, where he was headed to play with their kids. The ladies took him there and the babysitter had no idea who he was. He didn’t care. He walked through the door and the kids played while the babysitter called our friend, who then called us, knowing exactly who had invaded her house.

The Streak

Shortly after we moved north to Concord, CA, he hopped on his little trike, wearing just his undies and socks, and pedaled a few blocks across a busy road until the street turned sharply to the right. He didn’t want to turn, so he continued straight up a driveway, got off his trike and knocked on the door.

While I frantically searched the neighborhood, Sarah called the police. They had already gotten a call from the couple that lived in the house, so I headed there. C was happily sitting in a chair watching TV, while I got icy stares from the couple and a good talking-to from the police.

I suppose my calm demeanor and light scolding of the C-man masked my concern and increased theirs, but this had become fairly routine for us. I could have been angry and explained to him that he can’t wander off by himself, but he wouldn’t understand. It’s just another one of those things in our life that is hard for others to understand.

While C still wanders off from time to time, it’s much less frequent and we’ve learned a few things that make it more manageable. We still freak out, but we know his habits, we’ve marked his favorite destinations, and we have faith in the police and his guardian angel. We’re also looking for a good place to hide our car keys.

This is a Test: The Inner Struggles of a Special Needs Parent

On the day we found out that Christian would be born with Down syndrome, family and close friends tried to make us feel better by telling us, “God only gives you what he knows you can handle.” Their intentions were pure, but I couldn’t help but feel that diagnosis was more of a punishment than a gift. I’m not proud of that, but it’s the truth.

It was 16 years ago, but I can still vividly remember sitting with Sarah while a genetic counselor at a large Catholic university hospital near Chicago explained what was known at that time about the physical and mental effects of trisomy 21, the medical name for Down syndrome. She made it clear that those effects can manifest themselves in mild to severe ways, but there were some certainties that we thought would change everything.

The counselor then presented our options. Options?!? The soft spoken lady at the Catholic hospital told us we could have the baby and either keep it or give it up for adoption, or terminate the pregnancy.

I would have never considered termination, but she mentioned it and it made me think very briefly about it and, more importantly, why we wanted to have a child. It wasn’t because we expected to have the perfect child. It was because we loved one another and wanted to have, raise and love a child together. We had made that decision several months earlier and no other decision was necessary.

As certain as that sounds, we were both very shaken and disoriented by the news. The script of our lives had been altered and we had no idea what that meant.

Now what?

Over the next several weeks we mourned the loss of the “normal” child we had been preparing for. We continued on with the things that still had to be done, such as preparing the baby’s room, picking names, attending baby showers, and so on. We did a lot of research and talked to lots of people to try to fill in the blanks about the future, and then we waited to see what would happen.

The pregnancy grew complicated and Christian was born four weeks early by emergency C-section. He was only five pounds, but he and Sarah both came through it fine. He had none of the heart deformities or other physical issues that occur more frequently in Down’s kids. We felt fortunate.

We began weekly treks to Easter Seals when he was just six weeks old, hoping the therapeutic interventions would help with his development. He hit all of his milestones, just later than typical kids, and he was happy and healthy. We adjusted to our new life.

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Christian and Ben, Pismo Beach, CA, 2007

A little ‘normal’

A couple years later Sarah was pregnant again. We refused the genetic testing this time. Our life plan had become a daily plan, so we were OK with whatever God gave us. Benno was born following a normal, uncomplicated pregnancy. He was healthy. He had the normal number of chromosomes. This was how we had imagined it would be; you know, normal.

Within a few years, he began showing some signs of autism, nothing in the “Rain Man” realm, just some behavioral anomalies that caught our attention. He was evaluated and the diagnosis was confirmed. Not so normal after all.

Friends told us that God must really have faith in us as parents to give us two special children.

Apparently the almighty’s faith in us was immense, because it wasn’t long before Christian was evaluated and also diagnosed with autism. And Ben has ongoing struggles with anxiety, obsessive-compulsive disorder (OCD), and impulse control challenges.

And they’re both fully infected with puberty.

Other than that, things are normal.

Why us?

Ever since that day we met with the genetic counselor, I’ve frequently wondered why this was happening to us. Were Sarah and I being punished for something? Were our children being punished? What did we do to deserve this?

I’ve looked at other parents and their typical kids and wondered why this happened to us instead of them. What was so special, or awful, about us for this to happen?

I feel guilty, petty and selfish because of these thoughts, but I still have them sometimes, especially on the more challenging days.

Every time I’m embarrassed by their behavior in public, every time I get frustrated because they can’t understand or process what I tell them, every time I lose my cool and snap at them, I feel like a failure. Maybe God was wrong about me.

Sarah and I talk about these things a lot. The fact that we still talk at all could mean that God knew what he was doing. The stress of raising special kids has at times torn us apart and at other times brought us together. Many, many marriages don’t survive the challenges of raising a special needs child. Ours has survived that, and three major relocations, two layoffs, and whatever is next.

We are not perfect, but we are certainly determined to prove that God knew what he was doing.

About me: I am Pete Resler, a dad of two boys with specialhead and shouldersneeds. I created this blog to tell stories of exceptional people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.

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ArtThread Making a SPLASH! in Special Needs Community

I am a writer. I string words together to communicate information, persuade, amuse. I express my creativity by thoughtfully using language to paint vibrant pictures and performances in your mind, making you feel, think, react. It is my art. When I write I am filled with light.

For people with special needs, their ability to communicate, to express their feelings, to ask for help, to explore what is possible are often stymied by physical or mental limitations. Without an expressive outlet, their inner light is burdened by darkness. They can’t easily find a way out, so they may never become their best selves.

Art can be the switch that fills the darkness with light, and Jay Klein (founder and CEO) and Rob Rothschild (president) of the ArtThread Foundation, are making artistic expression easy and accessible with an online art program centered on a “digital Etch-A-Sketch” tool called SPLASH! And it is doing wonders for people of all ages who had been limited by their own minds, bodies, or environments.

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Try SPLASH! It’s free! Just set up an account and click “Create Art Online.”

“Our mission is to make art and creative expression more available to everyone, especially those impacted by social circumstance and physical limitations,” says Jay. Through the ArtThread Foundation, teachers are using SPLASH! in schools across the country to help children learn, express themselves, vent their frustrations, discover their creativity, and build self-esteem. “This is an adaptive technology that enhances success for students with disabilities,” says Jay.

The Power of Expression

Alonna had the opportunity to try SPLASH! when she was in her early 20s, shortly before aging out of the Florida school system. She lives with spina bifida, a spinal birth defect that affects her ability to walk and learn. She made it through high school in St. Petersburg and entered a transition program called Project 10 to prepare for living in the adult world. Project 10 is an ArtThread “pARTner” and uses the program to help students explore their artistic side.

“She really took to it in a special way,” says Rob Rothschild, president of ArtThread Foundation. Alonna was one of  a small group of Project 10 students who were selected to participate in Work of Art (WOA), an ArtThread program that teaches participants how to turn their love of art into an online business.

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Alonna in her SPLASH! studio

Developed in conjunction with VSA Florida and funded with a grant from The Able Trust, WOA helps students set up e-commerce businesses through which they can sell products featuring their original art. Through a custom portal to the online marketplace Zazzle, the artists create and sell shirts, coffee mugs, and other items featuring their work.

 

Rob showed Alonna how to set up and manage her store and design products on the Zazzle platform. “Alonna was very shy,” says Rob. “Learning how to create art and sell it in her own online store really boosted her confidence. She really took to it in a special way.”

“I love to paint and draw and be creative,” she wrote after launching her online store. “When I do art I am free from all the challenges that I face on a daily basis.”

How It Began

The initiating concept for ArtThread was born from Jay’s National Institute of Health, National Cancer Institute, and U.S. Department of Commerce funded research at the University of Florida. “I was studying the effects of artistic expression on symptom management in children undergoing cancer treatment,” says Jay. “I found that they had a better quality of life because they found meaning in the art. People who are more resilient have been able to attach positive meaning to their journey. That positivity displaces the negativity of their circumstance.”

“Then it dawned on me that it could help people with disabilities as well,” he says. “That’s when we came up with the idea to create the ArtThread Foundation as a way to develop the tools and partner with organizations that would benefit from it.”


“Any place there is no darkness there is light.”


Jay used the power of creative expression as a survivorship tool himself when he battled and beat cancer as a young man, and he is passionate about using technology and creative expression to foster self-esteem and community among children with disabilities, health challenges, and difficult social circumstances. The foundation partnered with Carnegie Mellon University to develop SPLASH! and the platform for the online art galleries.

Amazing Results

ArtThread has taken root in Florida with organizations serving people with special needs such as VSA and Project 10, and in Sonoma County, CA, with the Early Learning Institute. It is also used at the Shriners Hospital for Children in Tampa, FL, where young patients can create art with SPLASH!, providing a way to express themselves and bring light into their lives.

At VSA, Bonnie Hammer is a teaching artist implementing the program in schools in and around Sarasota, FL. Special education teachers apply for grants through VSA to implement an 8-week program. At the start of each program, she works with the teacher to use the online art tools to enhance the curriculum, whether it’s learning colors and shapes, combining shapes to build things, or learning math and science.

“It’s like a giant coloring book,” says Bonnie. “Once the students see me using it, they get very excited and want to try it.” The program also helps students develop fine motor skills and can help students focus, relax, and express their feelings. “I’ve even used the program with young offenders in a juvenile prison,” she says. “They have a lot of anger and other issues, and through the creative process they’re able to work through them.”

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ArtThread opens limitless possibilities for people of all abilities.

Karen Holtman tested ArtThread with kindergarten students at John B. Riebli Elementary School in Santa Rosa, CA. “Jay asked me to collect data to document how effective the program was with 5-year-olds. It had only been used with older children and adults, so he was skeptical it would be successful.”

“It was extremely popular with the kids,” says Karen. ArtThread provided the hardware for three SPLASH! stations in her classroom! She used it to teach the children colors, shapes and patterns. She paired them up and had them copy what one another created, teaching them how to work together. “It really helped lay the foundation for using technology in a fun way.”

Turn on the Light

Jay and Rob would love to see ArtThread in every school, particularly those that have eliminated the arts because of budget constraints, so students can use art to discover their abilities and unlock their full potential.

“When you remove art, you remove not only an individual’s ability to express himself, but you also remove a society’s ability to express itself,” says Jay. “Creativity is a key part of our wellness.”

If you would like to begin a program in your school or organization, contact ArtThread to become a “pARTner.”

You will be amazed at how quickly the light chases away the darkness.

About me: I am Pete Resler, a dad of two boys with special head and shouldersneeds. I created this blog to tell stories of exceptional people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.

C piano ENN

Damn the Dam! Let It Flow

Have you ever told yourself no? Have you ever let an opportunity slip by because you doubted your ability to succeed or you didn’t think you would like it? I lived most of my life telling myself no 10 times for every one time I told myself yes. I became a master dam builder, able to build a dam in an instant to stop the flow of opportunity. It became so comfortable that I started offering and building dams for other people in my life.

“Are you sure you want to do that?”

“No, you can’t sign up for alpine horn lessons.”

“No, you can’t have a dog because I know you. You’ll play with it, but I’ll be the one who has to pick up the poop.”

I told myself I could never find joy in writing about special needs because I wasn’t interested in sharing my daily parenting trials with strangers, like most of the other special needs bloggers were doing. Well, here I am joyfully writing because I told myself yes and I found a different approach that people seem to like. And I am learning to say yes to myself more and more, tearing down some of the dams I had built to meet what I interpreted as other peoples’ expectations of me.

This is top of mind for me because of this short video. I shared it recently on my Special Ops Facebook page to highlight my earlier post about the Exceptional Needs Network Camp that my son, Christian, attends.

More importantly, I never thought what happened in the video was possible. (Go ahead, watch the video. I’ll wait.)

To you it might just be a 15-year-old boy with Down syndrome messing around on a piano, hamming for the crowd. To me it was a miracle (the playing; I already knew about the hamming). We don’t have a piano in the house, we rarely listen to jazz, and the handful of times I’ve seen C around a piano he was only interested in making the most noise possible and banging the keyboard cover up and down, not exactly how I envisioned Beethoven starting out. So when C’s camp counselor told me he was going to play the piano during the closing talent show, I rolled my eyes, climbed up on top of the dam I had subconsciously built years earlier, and braced for the noise.

I positioned myself next to the piano so I could get some video as a record of his camp experience.  When he began to play, I looked at his counselor, who gave me the “I know, right?” look, and then I started simultaneously laughing and crying (amazingly keeping the phone steady enough to record the whole performance).

His beautiful music blew a big hole in my dam, knocking me off into the reservoir of possibility that had built up behind it and was now gushing over the top. I had let his disability blind me to his ability, and when he finally got the opportunity he shocked me with his awesomeness.

The real beauty, for me, is how natural it was. No lessons, no scales, no practicing “Mary Had a Little Lamb” over and over. It just flowed out of him. His possibilities are damless.

Where to Start

The Subplot of Marlys Kehm in the Evolution of Special Education

In 1945, Marlys Kehm was a nursing student, newly married to her sweetheart, who had recently returned from captivity in a World War II German prison camp. But she was not allowed to remain in school because, she was told, a married woman’s “place is in the home.”

Today those words would make rights activists seethe and lawyers salivate, but post-war America was very different then.

It was also very different for people with disabilities. Many were sent away by their families to live in institutions. None were in public schools. They were “the handicapped”:  “retarded,” “crippled,” “Mongoloid,” “idiots.” The use of these terms causes outrage today, but then they were the words used to describe those we now call the “differently abled.”

Marlys didn’t know it at the time, but, because society had closed the nursing door to her, she would take a path years later that would help shape the way disabled children are educated and assimilated into society today.

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Marlys Kehm looks through a thick scrapbook from her distinguished career as an early special education innovator.

Opening a New Door

Marlys settled in to raising her family, moving between military bases over the next 20 years. As her children grew older, she began taking college classes with the hope of becoming a teacher. While they were stationed in the Panama Canal Zone in the early 1960s, she took a class taught by Dr. James M. Wolf from Florida State University, a leading authority in the developing field of special education.

“It was fascinating. That’s when I really became interested in special education,” she said.

In 1963, her husband was transferred to the U.S. Army base at the Presidio near San Francisco. Dr. Wolf encouraged Marlys to continue her studies at San Francisco State University, which had a high quality special education program.

She completed her degree there in 1965 and posted the highest score on the San Francisco School District teacher’s exam, landing a job teaching the “educable mentally retarded” at Horace Mann Junior High School in the city’s Mission District.

Start Where They Are

It quickly became apparent to her that the standard educational method she learned in college was not going to work there. The standard method was, and still is, to design and teach a general course of study to the entire class, and then grade each student based on progress against a standard. But, Marlys found, her special students were each starting from a very different place, with different challenges. The standard method would not work for most of them. Her thinking and approach started to change

The next year, Marlys was asked by a former SFSU professor to teach in Novato, north of San Francisco. She found similar issues there, including students with behavioral problems. While the standard approach was to discipline the child, Marlys wanted to first understand what might be causing the child to act out. That’s when she began visiting her students’ homes.

Understanding Annie

She tells the story of “Annie,” a young girl there who had severe behavior issues. Marlys went to Annie’s home to meet with her father, who was raising his children alone. He urged Marlys to spank Annie, as that was the only way he could get her to listen.

Marlys suspected that might be indicative of the larger problem, so she did the opposite.  “I could see this family didn’t have much. I had a friend who gave me clothing that no longer fit her daughters,” said Marlys. “I would ask Annie to come to school early, and I would give her the clothes and teach her how to care for herself. It wasn’t long before her bad behaviors stopped. The principal noticed the change and asked me what I did.

“I showed her that I cared. School became a safe place for her.” Marlys helped build Annie’s self-esteem, and that opened the door to learning. She never would have been able to do that if she treated her just like every other student. She figured out where Annie was and met her there; that’s where her education began.

Treasure Hunt

Soon, the nuns running St. Vincent’s School for Boys in San Rafael asked the Marin County special education department to provide a teacher for a class of special boys. They sent Marlys.

St. Vincent’s opened in 1855 to care for the orphans of California’s Gold Rush, and when Marlys joined the staff in the late 1960s, it was a residential care facility for emotionally disturbed boys.

“That was a really wonderful place. The nuns truly cared for the boys,” says Marlys. “You had kids with behavior problems, so how were you going to reach them to teach?”

Marlys spent each evening planning her approach with each student for the next day. She shared the story of one boy who would not sit still long enough to learn. “I made up a treasure hunt for him,” she says. “I would hide his assignments around the room and give him clues about where to find them. He had to finish each assignment before he could look for the next one. It gave him a reason to focus and he began to learn.”

“I reached down to him and the other boys,” she says. “You had to teach each one individually.”

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Marlys exchanges information with another Marin County school administrator visiting Forest Meadows Development Center in 1971. (Please excuse the quality; copied from a very yellowed Marin Independent-Journal clipping.)

‘Uneducable’ Youth

Word of her innovative, caring approach to teaching special children was spreading. In 1970, she was asked by the Marin County Schools Office to run the new Forest Meadows Development Center at Dominican College in San Rafael. Marlys developed the programs and hired the staff. She served as the principal, then called “head teacher,” from 1970-75.

The students there were considered “uneducable,” mentally and physically affected children who were ineligible for the type of classes Marlys had taught in regular public schools. Forest Meadows was “a training school for the multiple-handicapped child and young adult,” according to a May 15, 1971, article in the Marin Independent-Journal.

“That was a challenge. It was not like teaching I had done before,” she recalls. “You really did have to start where they were. Some couldn’t feed themselves. We worked closely with the parents to figure out how we could help them.”

Forest Meadows was truly a community project. According to the Independent-Journal article, “There are four teachers, seven paid aides and 50 volunteers who come in during the week. On Mondays and Fridays nine girls from Edna Maguire Junior High School in Mill Valley work half a day and on Wednesdays six girls from Katharine Branson School in Ross help.”

“These young people have so much empathy for the handicapped and retarded… It’s wonderful. They really understand and help,” Marlys told the newspaper then.

Other volunteers included Dominican College students studying special education and “nurse-trainees” from the College of Marin. Dominican College allowed the county to use the land for free in exchange the teacher training and learning opportunities for the psychology, sociology and speech departments.

Teaching the Teachers

“All of the teachers at Forest Meadows were very young, including myself,” says Mary Falvey, who worked for Marlys beginning in 1975. “For many of us, it was our first job teaching.”

“She operated as if she were our mother, in the most gracious, supportive way. I’m just so grateful,” says Mary, who succeeded Marlys as Forest Meadows principal and went on to become the dean of the Charter College of Education at California State University Los Angeles.

“One of the most important things about Marlys was that she conveyed a sense of optimism and faith in the students, and it was contagious. She was always about joy. That was so important in our work, especially on the days when it was difficult.”

During this time, other Northern California counties were establishing similar programs and they sent staff to Forest Meadows to learn how Marlys did things.  Mary recalls Marlys organizing regular gatherings of special education teachers from across California to network and discuss strategies. “We all cared so deeply about our students,” she says. “Those networking meetings were very important since there were no proven strategies. There wasn’t anything in the text books at that time.”

Marlys left Forest Meadows and continued her good work as head teacher at the George Miller, Jr. Center East in Concord, CA, beginning in 1976. In a Dec. 28, 1977, article about the center in the Contra Costa Times, Marlys said, “Our goal is to make each child as independent as possible, to keep children at home and in the community, and to prevent the need for institutional care. If it weren’t for the center, I think you’d find that many of these children would not be kept at home.”

During that time, she also served on the board of directors of the Division on Mental Retardation for The Council for Exceptional Children, a special education professional organization. In that role, Marlys conducted professional development workshops for California teachers and helped shape the best practices taught to special education teachers nationwide.

She retired in 1982, but remained active. The California Department of Education called on her periodically to mediate disputes between school districts and the parents of special needs students. She also worked for Good Shepherd Lutheran Home, working with families to move their institutionalized children into group homes when plans were announced to close the state institutions.

“Many parents didn’t want the state to close the institutions,” says Marlys. “They were comfortable with their kids there because they didn’t have to worry about how to care for them.”

Where She Is

Marlys recalls her career, her students and her colleagues clearly and fondly, despite the decades that have gone by. But there’s one thing that still bothers her a bit: In those early days of special education, other teachers considered special education teachers inferior, assuming that they taught “the retarded” because they didn’t have what it took to teach in a regular classroom.

“It was just the opposite,” says Marlys. “For them, it was all about curriculum; get the students from here to there. They didn’t look at the individual. Our job was much more difficult. We spent a lot of our own time getting to know the parents so we could understand the children and help them learn. We had to innovate because there really weren’t many people out there doing what we were doing.”

Since Marlys walked into her first classroom, the words we used then to describe people with disabilities have changed as most of the old ones mutated into derogatory terms. Special education has also evolved as psychiatry and education have advanced, providing tools and techniques to help teachers better serve the needs of differently abled children.

But one thing has never changed, and I hope it never will: the best teachers still meet each child where he is, just like Marlys did 50 years ago, despite the best academic wisdom of that time.

head and shouldersAbout me: I am Pete Resler, a dad of two boys with special needs. I created this blog to tell stories of exceptional people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.

Unique Vision

Little Earl Rivard wasn’t expected to survive. The 4-month-old had been in a coma for a week after the vehicle in which he rode was hit by a drunk driver. He would awaken and he would live, but the damage was irreversible. Fortunately for Earl, now an adult, he was too young to have memories of the accident or what it was like to see.

Today his students don’t care that he is blind. To them, he is a caring, talented teacher who helps them read, helps them sing, and helps them achieve what others assumed they would never achieve. Like Earl, his students have unique abilities. And, like Earl, they want to make the most of those abilities and do what they love.

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Earl Rivard leads the College of Adaptive Arts concert choir during the 2015 graduation ceremony. (Photo by Linda Krakow Eaman)

Sheltered success

Earl grew up like most other kids. He attended a public school that had a program for blind students in a nearby community, attending regular classes and getting help with adaptive skills such as Braille. He was very active in drama and music, and even played some sports. He excelled academically and attended the University of California – Berkeley, graduating in 2001.

As he grew, he learned what he needed to get along, and he was provided various required accommodations in the classroom to insure he had the same access to education as his peers. But, as an adult, he found that the real world wasn’t so accommodating. “The road got a lot bumpier after college,” he says. “I really didn’t have a sense of what it’s like going through life with a disability, without the supports I had growing up.”

He tried to find work, but he soon learned that his ethnic studies degree wasn’t going to put food on the table. He had crossed the stage at UC – Berkeley graduation and hit a wall. He had to find a way to make a living, a way that minimized or negated his disability. Music seemed to be the logical choice.

Breaking through

“Music was always in the background of my life,” Earl says. His father played the guitar and had a collection of vinyl LPs that provided the soundtrack.

At 14, his family moved to Argentina, his mother’s homeland, for a year. Music is a rich part of that culture, he says, and the spontaneous, participative playing and singing sparked his passion. He’d always enjoyed singing, but something changed for him there. “It was during that year that I found the joy of performance,” he says.

Back in California, Earl got involved in high school musical theater and taught himself to play guitar. In college he sang in an acapella group. So when he had to find a way to put food on the table, he grabbed his guitar and started stumping for gigs.

He did well, performing often and recording three solo albums (“Troubadour Blue” and “Underground Railroad” are available online), collaborating on several others. He’s written some of his own songs and co-wrote others with his father. “My dad is really the songwriter in our family, and many of the songs I have recorded are his.”

While he enjoyed his chosen career, it was physically and emotionally draining. “I love performing for people,” he says, “but I never knew where the next gig would come from.”

Earl Rivard - CAA performance

Rivard’s love of performance shines on stage and inspires his students. (Photo by Linda Krakow Eaman)

Spreading his wings

Little did he know that his next gig would take him down a very different path. His scheduled had slowed enough that he agreed to help produce a musical program at a day program for disabled adults called Futures Explored in Lafayette, CA, where a friend was working.

It worked out so well that they asked him to teach a music class. It quickly grew from once a week to several days a week and suddenly he was a teacher. “It was the closest thing I’d ever had to a real day job,” he says with a chuckle. “I found real joy working with these special people.”

He also got married and moved to San Jose, adding a lengthy work commute to his daily schedule. It quickly became apparent that he no longer had time for performing, so he put that chapter of his life on hold.

He also started looking for a teaching opportunity closer to home and found The College of Adaptive Arts (CAA), an innovative school where adults with disabilities can explore and learn a variety of artistic and educational disciplines, much like a traditional college. (Read my blog about CAA here.)

“It’s very joyful, very rewarding, and very surprising,” he says. “I love what a supportive environment CAA provides,” says Earl. “It’s a deeply human place.”

Earl leads the concert choir and teaches Music Appreciation. He also assists with a variety of other courses and program, such as music recording, poetry, public speaking, and the student council.

“We’re going to ask you to spread your wings and grow, but we meet you where you are,” he says, offering the Reading Partners class as an example. “The students read to one another based on their level. One person might read three paragraphs, while another might read five words. Regardless of their ability, we always ask them to do a little bit more each time, and we celebrate their success.”

“I get profound joy and satisfaction teaching people where they are and celebrating their accomplishments.”

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Rivard performs during a CAA Staff Showcase. (Photo by Linda Krakow Eaman)

Once a performer…

While Earl loves sharing his passion for learning and music with his students, he is still drawn to the stage. He hopes to return to performing; he just needs to figure out how he can fit it into his life again.

He loves the troubadour style of musical storytelling, just a man and his guitar. “It creates a beautiful give and take with your audience.”

“My dream would be to find a way to reach a large audience with the interweaving of storytelling and music. I trust that at some point it will come together.”

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About me: I am Pete Resler, a dad of two boys with special needs. I created this blog to tell stories of exceptional people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.

A Creative Heart

Like anyone, Jenny Unrein has her ups and downs. “I like to draw and make people happy,” she says, but “I don’t like people staring.”

Jenny is the 27-year-old artist behind JennyLU Designs, an original art business in Topeka, Kansas, that she co-owns with her step-mother, Wendi Unrein.  Born from a desire to help others, the business is doing well, but it’s not easy.

Sure, any business will go through ups and downs, but Jenny is not just any business owner. She has Williams syndrome (WS), a rare genetic disorder related to the absence of several genes in the 7th chromosome. People with WS have developmental delays, health issues, and distinctive facial features, sometimes referred to as “elfin”, thus the frequent staring.

JennyLU Wendi and Jenny

Wendi and Jenny clown around at the JennyLU Designs booth.

Inspiration

“I used to make cards for my mom and for other people to make them feel good,” says Jenny about her life-long love of drawing. Cats and dogs, hearts and flowers are her favorite subjects.

“The thing that caught me was that her drawings were so passionate,” says Wendi, an artist and art teacher. She noted that Jenny rarely draws just to draw: “For her to do art, it has to be for a purpose, for someone else.”

“One day I asked her to draw a picture with a Sharpie, then I colored it in. It was very cute,” says Wendi. That first collaboration grew into a fun activity for them both.

JennyLU program cover

Jenny with the Topeka Easter Seals Capper Foundation program, featuring her original artwork

“One day I was watching Oprah and I saw a girl who had a lemonade stand to help people with cancer, and I wanted to do something to help, too,” says Jenny. So she and Wendi decided to create pictures to donate to fundraiser auctions.

“We took some of the pictures to Jenny’s school and the teachers bought all of them,” Wendi said. “That’s when I realized people would actually pay for Jenny’s pictures.” And JennyLU Designs was born.

That was eight years ago and since then the pair has traveled around the country to conferences and art shows where they sell prints, called “Jennydoodles”, and a variety of other products featuring Jenny’s art, such as note cards, jewelry and calendars. The products are also available on the JennyLU Designs website.

But it’s not always easy for Jenny. She struggles with anxiety, common among people with WS, and it’s often hard to keep her motivated to create new pictures. “Jenny really likes going to the conferences, so when she knows there is one coming up, she stays motivated,” says Wendi.

“We do well at conferences related to disabilities,” says Wendi, giving all the credit to Jenny. One of the most noticeable traits of people with WS is their social, endearing personality. They are very personable, caring, and aware of others’ feelings. “When they see Jenny, they buy,” says Wendi.

And Jenny has become a popular speaker at those conferences, as well, delivering workshops on owning a business and educating others about Williams Syndrome.

JennyLU plaques

Whenever they meet someone with cancer at a show or convention, Jenny and Wendi give that person a Love Life plaque as a show of support.

Art for good

But Jenny has remained true to her original motivation, regularly donating her artwork to a variety of non-profits, both locally and nationally, such as the American Cancer Society. “If I see someone with cancer, I think it’s important to help them. It makes me sad,” says Jenny.

She also creates the cover artwork for the program at the Easter Seals Capper Foundation annual fundraiser in Topeka and donates artwork for the auction. “We donate to a lot of the organizations that help our kids,” says Wendi. In 2015 they also began donating proceeds from card sales to St. Jude Children’s Research Hospital.

People love Jenny’s work so much many have commissioned original works, some from overseas. Her work has also hung in the White House and the Kansas State House.

“My favorite part is seeing people’s reaction to my artwork,” says Jenny. “I love having the business because I’m making a difference.”

Having the business has also made a big difference for Jenny, giving her confidence and purpose. “It doesn’t matter what kind of disability you have,” she says, “you can run a business.”

head and shouldersAbout me: I am Pete Resler, a dad of two boys with special needs. I created this blog to tell stories of exceptional people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.

ENN: An Exceptional Experience

In the summer of 2007, 15-year-old Remington Fox walked onto the grounds of Camp Arroyo near Livermore, CA, literally terrified of what he was walking toward. His mother had nudged him to volunteer at a camp for youths with special needs and he was not happy about it.

“My parents heard that this camp was looking for volunteers, so my mom got me an interview. I wasn’t interested at all. I was really intimidated. I didn’t know anything about people with special needs,” he says. “But they thought it would be good for me, so I did it.”

Fast forward to November 2015: My nearly 15-year-old son Christian (heretofore “C”) walked onto the grounds of Camp Arroyo for his first residential camp, a 2-night, 3-day stay only 40 minutes from home. He wasn’t at all terrified, but rather was ready to cut loose without Mom and Dad, fearless as always and eager for Mom to head home.

My wife, Sarah, had camped out most of one night the previous spring to get one of the last slots at the uber-popular Exceptional Needs Network (ENN) camp. After checking in, C met his personal camp counselor, the one and only Remington, who by then was one of the most experienced counselors there.

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Christian and Remington

“I volunteered that first summer and fell in love with it,” says Remington. “It really changed my perspective on kids with disabilities.” He’s worked every camp session (three per year) since that first one, and he plans to do it as long as he can. “It’s like a vacation for me. It resets me on what’s really important.” C now feels the same way, about the vacation part anyway.

A Little History

“When my son was young, I needed to find something for him to do outside of school, especially during the summer,” says Valerie Hund, one of the founding mothers of ENN and the current board president. There were no activities available in the Livermore area for kids on the autism spectrum, like Grayson, who need a level of structure and understanding that traditional programs don’t usually provide.

“At that time there was only one after-school program in the area for kids with special needs, but nothing during the summer,” she says. In 2001, she was introduced to another mother with similar concerns, and before long they had formed a small group that eventually became ENN.

They wanted to establish a camp to give the kids an opportunity to enjoy outdoor activities and, equally importantly, give the parents a well-deserved break. “That’s what is different about us,” says Laura Peters, ENN’s camp director. “The other special needs camps in this area are all family camps. Ours is a respite camp just for the kids. As important as it is for the kids to have their own experience, it is also very important that the parents get a break.”

By the next summer, the group had organized its first camp for a small group of children, mostly the children of board members and their friends.

They were fortunate to get access to Camp Arroyo, which the Taylor Family Foundation helped established in 2000 with the East Bay Regional Park District. Operated by YMCA of the East Bay, Camp Arroyo hosts a variety of camps for children with life-threatening and chronic illnesses, developmental disabilities, and youth-at-risk.

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Chelsea tackles the climbing wall at Camp Arroyo.

An Awesome Camp Experience

ENN has three camps there each year, two in summer and one in the fall. Campers take part in a wide variety of activities, regardless of their disability, including swimming, zip-lining, a climbing wall, arts and crafts, and other fun activities.

The 45 slots per session fill up quickly every spring, so if you’re not in line in the wee hours before sunrise on registration day, you might be out of luck.

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Brandon keeps the beat.

Exceptional Staff

Remington’s experience is common, first volunteering as an activity aide until turning 18, then becoming a counselor, assigned to one camper for the duration of camp. It’s not 9-to-5, but around the clock from the time the camper arrives until he leaves 3 or 4 days later. And sleep is not guaranteed; ask Remington, who spent many late night hours with C in the aptly named “Up All Night” cabin.

“When I started (as a counselor), they gave me the easier kids,” he says. “Now that I’m more experienced, they often assign me kids that need a little extra help.” He made a strong connection with his very first camper, Ryan, who comes back every summer and requests Remington as his counselor. “He’s my buddy,” says Remington. “We talk throughout the year and even get together for lunch sometimes.”

The counselors are paid, but for most it is a labor of love. “We think it’s really important to have the best staff and we’ve done whatever we needed to do to be sure we could pay them,” says Valerie.

Making Ends Meet

“We rely a lot on fundraisers throughout the year, but a lot of that money dried up during the recession. At the end of our camps in 2009, many of the staff gave some or all of their pay back to help us stay afloat.”

While parents do pay a nominal registration fee, there is no fee to attend camp. To offset the $20,000-plus cost to operate each camp session, the all-volunteer ENN board conducts fundraisers throughout the year, individuals donate or raise funds specifically for ENN, and parents are encouraged to submit a request for funding to their Regional Center for their camp session.

And, of course, donations are always welcome.

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Josh flies on the zipline.

Making Memories

Each camp session ends with a talent show and awards ceremony with specific recognition for each camper. C earned “The Steph Curry Basketball Award” for his MVP-like moves and his deft touch with the roundball.

Sarah, along with the other parents, attended the final event, but, knowing that meant the end of camp, C did not hide his displeasure when he saw her.  As disappointed as he was to have to go home, he is now looking forward to his next camp, this time in the summer with the chance to swim, his second favorite activity after bowling.

Remington, who is a new college graduate and an aspiring children’s book author, will be back as well. “They say Disneyland is the happiest place on Earth, but I think it’s ENN camp. It’s special. It really is a wonderful place.”

head and shoulders

 

About me: I am Pete Resler, a dad of two boys with special needs. I created this blog to tell stories of exceptional people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.

Don’t Dis My Abilities! Help Them Shine!

“I found I could say things with color and shapes that I couldn’t say any other way – things I had no words for.”  – Georgia O’Keeffe

Artists have a special gift that often lies dormant until someone provides encouragement and opportunity, allowing it to fully blossom. Be it painting, dancing, writing or film-making, creativity needs inspiration and an outlet to release expression, regardless of a person’s physical voice.

DeAnna Pursai and Pam Lindsay have opened that door for adults with disabilities by founding the College of Adaptive Arts (CAA) in San Jose, CA. There students have a unique opportunity to express themselves like they never could before thanks to a dedicated team of professionals who are building a true college experience for people who don’t have a place in a traditional college classroom.

CAA hiphop

Professor Isabella Torres and dance student Renee show their hip-hop moves during the 2015 graduation ceremony. Photo courtesy of Linda Krakow Eaman.

A Better Option

“When people age out of the special education system as young adults, there aren’t many programs for them,” said DeAnna, who serves as executive director and is a public school teacher. “We wanted to provide an environment where they can explore and expand their abilities, not sit in a day program for the rest of their lives because of their disabilities.”

She hatched the idea while running a non-profit theater program for children with disabilities, called Angels on Stage, named for her sister, Angel, who has Down syndrome and acted in a similar troupe as a child in Indiana.

There she met Pam, whose daughter performed with the troupe. With a professional background in acting and other performing arts, she began directing the troupe. She soon saw the need for a similar program for disabled adults and began running an acting workshop for them.

Pam had also been homeschooling her daughter, Val, using theater and music to help Val learn, and was also completing a master’s degree in theater arts with a focus on how techniques used in teaching character acting can be effective in teaching social cognitive skills to autistic children.

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CAA co-founders Pam Lindsay and DeAnna Pursai. Photo courtesy of Linda Krakow Eaman.

Going Live

With DeAnna’s experience in special education (she still teaches part-time) and running a non-profit, and Pam’s arts and education expertise, they launched CAA in 2009, renting a small space at a dance studio for their first 12 students. Seven years in, CAA has moved around a bit as discounted spaces are lost and new ones found, all the while growing to more than 70 students today.

They enjoy eight different courses of study, learning dance, vocal and instrumental performance, TV and film production, fine arts, and a variety of other courses in the arts and other educational disciplines and life skills.

And like traditional universities, CAA offers low-cost bachelor’s and master’s degree tracks in each discipline. The standards and accreditation are unique to CAA, but that fits its unique community perfectly. And so does the staff, more than half of whom also have a disability.

Life is a Stage

Performers and artists learn their craft in the classroom, then, like other professionals, take to the public stage, screen and gallery to share their art with the masses. Performance groups, such as the graduate theater troupe, perform for local children, while TV and film students produce a TV show and debut their short films at the annual Celebrating Differing Abilities Film Festival.

Several aspiring actors even had the opportunity to participate in a professional-style audition before some of the top professionals in Bay Area theater through a partnership with City Lights Theater in San Jose. Students experienced it all, from preparing their resumes, complete with professional photos, to rehearsing, performing and receiving feedback from the panel.

“It was really a great experience for the students to feel the pressure and excitement of a real audition,” said Pam. “But it was also a real revelation for the professional judges, who now view our actors as legitimate members of the theater community.”

CAA Carlos & Nathalie

Carlos and Nathalie keep the rhythm during one of many music classes at CAA.

Student Ambassadors

When it comes to selling the school, the students are the secret sauce. “Every time someone tours the college or the students go out and perform, we win at least one more heart,” said DeAnna. “We’re not a day care; our students want to be here to learn, create and contribute, and it shows in their enthusiasm.”

When it came time to find the space the college now occupies, it was a student who sold the property owner on providing the space at a discount. But with that discount comes the possibility that CAA will lose that space if someone else is willing to pay full price. “We’ve had times when we’ve lost our space and had to scramble to find places to hold our classes,” she said. “We’re very fortunate and thankful that we have this space, but we are always looking for a permanent place to call home.”

Growing on a Permanent Foundation

Their goal is to find an area college that will welcome CAA as a charter school on campus, providing a permanent home and giving students a real campus where they can utilize more resources and mingle with typical peers.

“Once we have a more permanent location, we’d like to grow into other markets to provide opportunity to adults with disabilities in other parts of the country,” said DeAnna. They have also submitted a grant application to fund the technology they need to provide distance learning for people who are physically unable to get to campus or live in other parts of the world.

Stay Tuned

The story of CAA is rich and evolving, with students, professors and volunteers all working to build a community where adults with special needs can learn, grow and express themselves as they want. It’s all too much to tell in a single post, so stay tuned to Special Ops for more stories of exceptional people at CAA!

About me: I am Pete Resler, a dad of two boys with special needs. I created this blog to tell stories of head and shouldersincredibly good people, including those with special needs and those who give of themselves to make life better for them. My hope is that these stories expose more people to what’s good in the special needs world and inspire them to give of themselves to make life better for those with special needs.

You can help:  I’m always looking for new ideas. If you know someone you think should be featured, shoot me a note at specialopstories@gmail.com.