Careproviders are Superheroes on Earth
March 17, 2019
I have had the honor of being my sister’s primary careprovider for the past 3 months. My sister is a 45 years-old, has Down syndrome, is severely overweight, has a 45 degree curvature in her spine, and has numerous other medical conditions.
I have never felt so exhausted, overwhelmed and exasperated while at the same time feeling so content and fulfilled. I have the most utter, deep respect and awe for careproviders. I believe they are the true superheroes on Earth. Here are some lessons I’ve gleaned and observations I’ve experienced while being my sister’s primary and full-time careprovider:
- I did not know it was humanly possible to brush one’s teeth for a half hour. It is. On good days.
- Bodily functions and all that entails are real, constant, unpredictable, gross, and ongoing, and utterly exhausting.
- I had no idea that anyone could be stretched to the max and be pulled in so many different directions simultaneously – dealing with a broken refrigerator, and a husband’s surgery, and a ER visit for the sister, all while managing a teenager and all of her school pick-up/drop-off needs.
- She could vacillate on a dime from being my sister holding a rational, typical adult conversations to becoming childlike and vunerable needing extreme and immediate support and care.
- I realized that her demeanor directly reflected mine. The more I exhibited stress, irritability, the more she behaved the same. When I was mindful to keep my demeanor in a place of love, kindness, and serenity, she also would exhibit the same.
- Maintaining healthy personal relationships with others in your life such as a spouse, friends, colleagues, and children is demanding, challenging, and anguishing and is an underlying source of tension and angst.
- I experience unbelievable bursts of delightful, refreshing childlike innocence. She exclaimed one day, The ‘ups’ truck is here. I had no idea what she meant until I saw the brown UPS truck. I then realized when she kept saying she wanted to go to the ‘ups’ store, that is what she meant. Another time I had a long talk to her on the way to my college about how she had been mean to another student, and I needed her to do the right thing and apologize. She gave me a guilty look, pondered a moment, and exclaimed, ‘I came out here all this way for nothing!’
- I realized how much I valued and appreciated the tips and advice from other careproviders, gaining valuable tricks and wisdom as we were passing each other and the hallway and experiencing brief bursts of respite sitting together during classtime.
- Just when you think you’ve got one facet of life under control, another issue crops up at impeccably inconvenient times.
- When providing care for another human being, you enter into almost a different time dimension where everything operates at a slower pace, almost like navigating in a parallel universe.
I truly believe that careproviders are Superheroes through and through. For anyone providing direct care to someone on a constant basis, they are giving the ultimate sacrifice and for sure the best versions of themselves. For parents of children with special needs who have done this their entire lives with no end in sight, I salute you, I honor you, I thank you, I am in awe of you, and you are sincerely and truly Heroes on this Earth.
Longtime College of Adaptive Arts supporter and donor Erin Benford has been an integral part of the school since its inception. Erin has been a well-known realtor in the South Bay for nearly twenty years. She currently works for Christie’s International Real Estate Sereno, but prior to that she was a teacher, so she always had a passion for education. After meeting CAA co-founder DeAnna Pursai at a Silicon Valley Chamber of Commerce mixer, the two bonded over their shared similarities of being school teachers and having loved ones with disabilities. Erin’s son Joel had learning disabilities and was diagnosed with Asbergers Syndrome. He is high functioning, so he was able to work in various different jobs before eventually settling in as a valuable assistant at Erin’s real estate business. Working alongside Joel, Erin knew firsthand the importance of creating opportunities for a neurodiverse population. Aside from her family, her real estate business and philanthropy, one of Erin’s biggest passions is sewing. She is the president for the American Sewing Guild’s San Jose chapter which encompasses 5 different bay area counties. The guild is a community service organization and educational group, focusing on garment making, textile arts, quilts, machine embroidery and much more. Erin says she hopes more people will get involved and support organizations like CAA who have no federal funding. “Raindrops make oceans,” said Erin. “If everyone gave just a little, it could do so much.”
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.
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