Special Ops

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.

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 specialneeds. 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.

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.

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.

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.”

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 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.

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.”

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.”

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.”

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 7^th chromosome. People with WS have developmental delays, health issues, and distinctive facial features, sometimes referred to as “elfin”, thus the frequent staring.

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.

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.

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.”

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.

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.

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.

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.

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.

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.”

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.

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.

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.”

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 incredibly 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.

Pigeon Holes are for Pigeons

Michael Criscione was destined to contribute to society as a vending machine attendant, or at least that’s what a government bureaucrat thought he should do. And maybe for others living with spinal muscular atrophy (SMA) that would be just fine, but Michael is not typical.

“I wanted to do something that makes a difference,” said the 33-year-old when we met in Lafayette, CA, to chat and have a beer.

Allow me to put the scene in perspective: When I said we enjoyed a beer, we did, just in our own ways. I drank mine the usual way, while Michael’s attendant poured his directly into his stomach via a port in his abdomen.

Body breakdown

You see, Michael can’t swallow because the muscles that control that process no longer function properly, much like most of the voluntary muscles in his body, including those that help him breathe. SMA is a genetic disorder that results in muscular deterioration and impaired mobility. Michael has Type 2; Type 1 is the most severe. It is a progressive disorder that cripples more and more over time.

He’s in a wheel chair, his movement is very limited, and he has difficulty speaking clearly. His attendant, Christian, had to interpret much of what he said during our discussion. A BiPAP machine aids his breathing. Despite his physical limitations, Michael lives in his own place, but he does require assistance 24/7.

While his body is greatly affected, his brain and his motivation are fully functional. So when the bureaucrat pressed him to do the vending machine work, it’s understandable why Michael felt insulted.

Michael Criscione, flanked by Friends for Benefits Barrel Girls Savannah Gray (left) and Pilar Fox, with friend Kim Masdeo

Making his own way

After finishing high school, Michael studied film at the University of California at Berkeley. During that time he started an indie rock band called the Pied Paupers with some of his attendants who were musicians. Michael was the manager, booking shows and getting them some local radio play.

He took his first job as head of fundraising for a non-profit run by a high school friend. He tapped his music network to begin producing concerts for the charity, but the organization eventually folded.

He took that experience and started Friends for Benefits, a non-profit that helps other non-profits by producing fundraising events primarily in the San Francisco Bay area. “I found that most non-profits are great at whatever their mission is, but most of them have no idea how to fundraise,” he said. “There is definitely a need for what I’m doing.”

Since his first music benefit event under Friends for Benefits in 2012, he has organized more than 10 events, more recently focusing on other different genres that bring in more money for the charities. Michael is the organizer, and others help with the details, such as event operations and finance.

With a fully charged wheelchair and an attendant at his side, Michael is constantly prospecting for future events by meeting entertainers and other celebrities at public events around the Bay area, such as shows, fan conventions, and book signings.

Bigger and better

In January, comedian and character actor David Cross (Tobias Fünke on “Arrested Development”) performed his “Making America Great Again” stand-up show at Davies Symphony Hall in San Francisco. Cross generously donated a portion of the proceeds from the evening to Friends for Benefits.

The next event will be “Call Me Lucky: An Evening with Bobcat Goldthwait” (yes, children of the ’80s, that Bobcat Goldthwait) on May 27, 2016, at the Roxie Theater in San Francisco. It will be a screening of “Call Me Lucky”, a documentary directed by Goldthwait about comedian Barry Crimmins, followed by a Q&A.

“We’re not fully established yet,” said Michael, “but we’re doing bigger and better things.” Several other events are being planned, but his dream is to create a week-long arts festival, with a variety of events benefitting several charities. “I want to get Friends for Benefits to a point where we are doing measurable good and I can be fully independent, with no assistance from the government.”

And how likely would that be if he was looking after vending machines?

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.

Unlock My Life

Have you ever been annoyed when you have to send an important message to someone and your computer is acting up? Or your cell battery dies just when you need to send an important text? Frustrating, for sure!

So imagine what it must be like for someone waiting more than 20 years to communicate his needs, feelings and thoughts, locked inside his mind by a faulty connection between his brain and body.

The disconnect is still there, but the lock is now open. Chris Dodd can’t use his voice, but his words are clear, expressive, and intelligent.

Masai and Chris

The Wrong Key

As a child, doctors diagnosed Chris with global developmental delay, or delays in several different areas. He could not speak and had poor control of his physical movement, manifested similarly to cerebral palsy. He was given little hope of communicating beyond the sounds and movements that indicate basic needs, and no one really knew his level of intelligence.

He was enrolled in various programs such as AchieveKids, which teaches non-verbal children to communicate using pictures, but had limited success. As he grew physically, so did his isolation and his understanding that he was different. “It was sad because I was teased a lot,” Chris told me, “but I had my family and friends.” He took anti-anxiety medication to help ease the stress.

In his early 20s, Chris went to see a different neurologist, who told Chris’s mother, Kim, that he clearly has autism. “We were very surprised,” said Kim. “It was the first time anyone had ever made that diagnosis and it changed the way we thought about how we could help him.”

Shortly before his 21^st birthday, Chris moved into his own apartment. “I needed my own place,” he said. “It was time to leave the nest.” His family’s home had grown very busy and was a bit overwhelming for him. His first live-in caregiver was a family friend, who made it easier for Chris to make the transition into a quieter apartment that better met his sensory needs.

The Right Key

When Chris was in his mid-20s, Kim, who is the founder and executive director of Trinity CHANGE, Inc., a supported living services agency in San Jose, CA, discovered the key to unlock Chris’s communication during a meeting with a non-verbal client. He used a technique called supported typing to communicate, and Kim hired an expert to teach the technique to Chris and his caregivers.

By the end of the first session he was communicating… for the first time in his life!

I interviewed Chris at his apartment and, as a father of autistic kids, I was surprised by the difficulty he had controlling his movements. Kim explained that Chris has a “disorganized body” as the result of his autism. Basically, that means there is a lot of static in the connection between his brain and his body. When his brain sends a signal for his body to move, the message is garbled and his body can’t always do what he wants.

Turning the Key

He needs physical touch to “organize” his body, explained Kim, meaning he needs someone to apply a bit of pressure so he can better control his movements. During the interview, Masai Davis, Chris’s primary live-in caregiver, sat next to Chris, who sat in front of his type pad, a laminated page with the alphabet, propped up on a small easel. After each question, Masai would lightly hold Chris’s right arm as Chris attempted to touch the letters to form his words. That pressure helped Chris target the letter more accurately, but it was often still a struggle.

Masai, who has worked with Chris for nearly five years, gently provided physical and verbal support when Chris lost focus or control. Sometimes it took several minutes for him to complete a word. Knowing how long it took Chris to share his first words, I was happy to wait.

With his voice unlocked, everything began to change for Chris. As his communication skills grew, so did his world. He soon was off the anti-anxiety medication.

Besides Masai, there are typically 2-4 other caregivers who come in part-time to ensure around-the-clock support for Chris. Finding and keeping good staff is the hardest part about living alone, says Chris. “They don’t get paid much and I get attached to them. I just lost two good staff,” he said. “These days are really rough.”

But when I asked him what he would change, if he had the opportunity, he said, “Nothing. I have a great life.”

About me: I am Pete Resler, a dad of two boys with special needs. I created this blog to tell stories of incredibly 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.

Future Interruptus

Baby #1

One fall morning in 2000, I received a distress call from my wife who was expecting our first child. A “genetic counselor” had called with the news that a genetic test confirmed that our unborn baby had Down Syndrome. One extra chromosome sent our future into a hard left turn … across traffic … on two wheels … with its eyes closed.

I reacted by sitting silently, freaking out on the inside and wondering just how much our lives would change, or, more accurately, how what we expected life to be like as parents would change. Given the instinctual options of fight or flight, I chose fight. And to be effective I had to know my enemy… so I Googled it.

In hindsight, we feel very fortunate that we knew before he was born. We read all that we could, talked to other parents who went through what we were facing, and we were able to prepare ourselves. Equally important, we were able to prepare our family and friends, so no awkward silences when people visited us in the hospital, no “mongoloid” references from old Aunt Gert, and no grief. It was just as birth should be, filled with joy and celebration.

boys in hot tub

Baby #2

Benno came along 30 months later. We didn’t feel the need for genetic testing during that pregnancy. We had only one hope, that he would be healthy, and we felt fortunate that he was born healthy and “normal.” We settled into a fairly comfortable routine.

Warning: Never get too comfortable! It wasn’t long before both boys were diagnosed with autism. Now Mr. Future was in a barrel roll heading for the wall. Over the years, Ben’s list of diagnoses has expanded to include ADD, trichotillomania, and OCD (I know I’m forgetting one or two). The one that is dominant changes from year to year, month to month, even hour to hour some days.

It’s a daily struggle for them and us, just like it is for every person and family living in the special needs world. Not only do we all deal with the boys’ various limitations, but we also deal with the limited understanding and acceptance of others. That said, things are much better today than they were in the past, when children with disabilities were hidden from the public or, worse, confined in institutions.

The Bright Side

The good news is that today every person, regardless of perceived capabilities, can achieve the unexpected and contribute to society in meaningful ways. By bringing those with the needs and desires, but not the capability, together with those with the capability and the desire to help, perceptions shift toward every person’s unique value, instead of their relative abilities.

This blog is my contribution to that effort. With every post I will share inspiring stories about people with special needs and those who give from their heart, mind and soul to make life better for them. My hope is that “Special Ops” will educate the uneducated, inspire the uninspired, and in some way contribute to the eventual death of “normal” as an adjective.

Follow Along

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Thanks for reading. I look forward to sharing this journey with you.

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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