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.

MarlysKehm

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.”

20160718_112131

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.

Rivard_chorus

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.”

Rivard_showcase

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.”

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.

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.

ENN Remington & C

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.

ENN climber

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.

ENN drummer

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.

ENN zipline

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.

CAA founders

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.

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

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?

About me: I am Pete Resler, a dad of two boys with special needs. I created this blog thead and shoulderso 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.

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.

Chris and Masai conference dinner

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 21st 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 thishead and shoulders 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

To stay up to date with the latest and greatest, you can subscribe to the blog by clicking the Follow box at the bottom of the right-hand column on this page, like the “Special Ops” Facebook page (https://www.facebook.com/specialopstories/), or follow the blog on Twitter (@specialopstory).

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

About me: I am Pete Resler, a dad of two boys with special needs. I created thishead and shoulders 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.