CAA Blog

Kimberly was born in May 1978. She was a beautiful baby but something seemed off so testing was done and it was determined that she had Down syndrome. Testing also revealed she had a heart defect with a hole between chambers and a valve that didn’t work properly. This was all new to us. She was doing well so doctors decided to wait to let her grow bigger before doing heart surgery to repair the defects. We waited about 3 years and finally had open heart surgery at Stanford Children’s Hospital. The heart surgery went well but there was scaring below the vocal cords in her air way which required a Tracheostomy Tube below her vocal cords to allow outside air to & from her lungs. The Trach tube required suctioning to remove mucus from her airway and her lungs. But as Kim grew and made friends in the neighborhood and at early intervention school she learned she loved to dance and perform for the family and for an audience. She thrived when dancing in class, when practicing and when performing. She was a regular dancer at the Alice Porter Dance Studio in San Jose. She taught us, her parents, what she could do. We never said “you can’t” or “You won’t”. I would urge parents to use positive words when speaking to their children. She learned sign language to help communicating with others and her teacher. She learned to cover her trach with her finger to force air through her vocal cords to speak out loud. When teaching Kim how to ride a two wheeled bike she had difficulty with balancing. We tried everyday for a long period of time. We eventually found a three wheeled recumbent bicycle. She could ride that bike right away, and loved it. With her medical issues, we ended up with a trip to see a specialist in Salt Lake City, Utah and several trips to Cincinnati, Ohio. Dr. John Langdon Haydon Down (1828 – 1896) was a British physician well known for his work & description of the genetic condition “Down syndrome” which he originally classified in 1862. He is also known for his work in social medicine and as a pioneer in the care of mentally disabled patients. It is too bad he didn’t have a different last name or a different way to identify the syndrome. For many of our children there is so much more “Up” and not so much “Down”. Kim joined several dance classes and used sign language for the church choir. Once we discovered College of Adaptive Arts there were several classes Kim wanted to take part in. She loved her new friends and brought several existing friends to join her in classes. She thrived in dancing, acting, practicing and learning new things. She led practice sessions at various times in several classes. The College of Adaptive Arts has been a great resource for Kimberly and for us to help and enable Kim to learn, grow and thrive in many areas. She loved to perform in public and on stage. CAA offers many types of learning scenarios and learning environments. It can be good to consider which classes are available and join those that could turn out great for your child. The sky is the limit. The College of Adaptive Arts is a lifelong learning environment. Thank you to Pam and DeAnna for your vision and for your follow-through. Thank you to all the current leaders for their work and dedication. CAA has been a blessing to us in so many ways.

Danielle Weaver was a beloved Professor, Director of the School of Communications, and Scheduling Manager at College of Adaptive Arts for the past 13 years. She was a shining light and constant source of positivity, joy, and connection at our college. Danie joined CAA’s team soon after she watched her sister perform a CAA puppet show at Abilities Expo in downtown San Jose. The smile, joy, and encouragement she gave her sister made her a natural fit to be a professor at College of Adaptive Arts. Danie started teaching classes with overflowing love and commitment to her beloved Cardinals while we were holding them all over town, without an anchor campus site. She rose quickly to the role of lead professor while helping develop a brand-new School of Communications, and then became the Director of that foundational school of study in 2015. She created one of the most impactful nights in CAA’s history – the inaugural Communications Showcase - held at the Corinthian Center in downtown San Jose. That was such a special night, spent celebrating the abilities of our students and faculty and enjoying the spoken and signed words. She graciously mentored our staff member, Professor Anthony, to take over the role of the directorship of the School of Communications when she embraced our expansion challenges, providing cornerstone contributions through additional managerial roles. Danie will be forever remembered and celebrated for her kind spirit, her acknowledgement to "Always Honor the Introverts," her calm, non-judgmental demeanor, and the grace she extended to everyone. It was almost impossible not to be put in a good mood around Professor Danie – she just radiated joy, faith, and hope. She would often say that if you walked through her classroom, you might be inserted into a poem or story with the students. We also fondly retain her passions for fantasy tales and all things Disney. We could always look forward to enjoying such themes together in shared class experiences and personal conversations. Danie was an accomplished author and poet who had published her own book back book, Catching Teardrops – a personal collection of poetry created during and about her journey with cancer just one year after her marriage. We lost her way too soon from this disease at way too early of an age. She impacted so many lives and was a true 'Mountain Mover' within her school and community. She will forever remain a beloved and cherished core member of our College of Adaptive Arts Super Staff.

When my son, Saïd, was born, we discovered he had Down syndrome. I was 21 years old at the time, and I hadn’t done prenatal testing because it was considered a “low-risk” pregnancy. Suddenly I found myself sitting in doctors’ offices and hearing professionals describe what they believed his future would look like. “He may never learn to read.” “His learning will likely plateau around age four.” “It’s unlikely he will live an independent life.” Those are frightening things to say to a young mother. Thankfully, I didn’t believe them. Instead, I chose to raise my son with the expectation that he would learn , would grow , and would live as full a life as he was capable of living . And he did. When the College of Adaptive Arts started in 2009, Saïd was 19—just the right age for college. We became part of the CAA community and never left. He took classes, performed in the community, and truly blossomed as a young man. Along the way he discovered that he loves theater. He also loves to sing. Don’t give him a microphone—you may never get it back. 🙂 Today, at 35 years old, Saïd lives with a roommate and a caregiving couple. He has a vibrant, joyful, independent life. And he still loves taking classes every semester. My own journey with CAA has been equally meaningful. For most of those years, I was a parent in the community. I soon joined the Board and became a professor. I taught classes like Speaking with Confidence and Joy of Baking , and eventually stepped into the role of Executive Director. But the belief that first guided me as a young mother has never changed. The belief I had in Saïd’s ability to learn, grow, and build a meaningful life is the same belief I hold for every student who walks through the doors of the College of Adaptive Arts. And something remarkable happens when you lead with that belief. Students rise to meet it. When we expect growth, they grow. When we expect contribution, they contribute. When we expect full lives, they build them. At CAA, we don’t define our students by limitations. We define them by possibility. And every semester, they remind us that possibility is far greater than anyone once imagined. -- Nicole Kim Executive Director College of Adaptive Arts

The Ties That Bind

College of Adaptive Arts is beginning a new weekly blog series featuring a story of a CAA student, professor, or parent/care provider each week. We hope you enjoy and can resonate with these stories. If you could comment and share with your networks to amplify this model, we'd be deeply obliged to you: Angel Ellenberger, sister to CAA Co-Founder DeAnna Ellenberger Pursai, grew up in Bluffton, Indiana alongside DeAnna in the 70's and 80's. It was a glorious childhood, full of love, joy, laughter, and sisterhood bonding. Angel was always quite social, and she was a hit wherever she went with the cheerleaders and the community. DeAnna came home from college one summer when Angel was in a postsecondary program (mandatory 18-22 extended years for students in the special education system). At the time, Angel was actively working with a job coach cleaning the desks at the local high school. DeAnna thought to herself, "Cool! That’s what happens to adults when the special ed students leave the school system." About one year to the date, DeAnna came back home to find Angel more than doubled her size and eating a bag of chips on the couch. She asked what had happened, and their mom said that the funding was cut for the job coach program and that Angel didn’t want to attend the one adult day program shared across their 2 rural counties – the only feeder option once you left the special education system. Angel did indeed end up going to the day program after she gained so much weight that she had congestive heart failure in 2000 and almost passed away. Needless to say, it’s been an arduous and tenuous endeavor. Angel is intelligent, perceptive, social, artistic, creative, and comedic. She needed a support system with more opportunities to socialize, learn, engage beyond coloring in local dime store coloring books for hours. That critical gap that Angel experienced sparked the seed of change, and together with her partner and friend Dr. Pamela Lindsay, College of Adaptive Arts was born. DeAnna and Dr. Pam built the college model they couldn’t find and so many around the world also could not find. To those people searching, CAA's message is, "We hear you, we see you, and we’re coming." CAA will not stop until it has garnered the support, awareness, and public and private levers to scale this lifelong collegiate model worldwide to become as widespread, welcoming, and accessible in the education space that Special Olympics provides so robustly in the sports and athletics space. CAA's revolutionary model is proving everyday that inclusive education is not charity; it is sustainable, transformative and a lifelong right.