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.
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
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.
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