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.
This is a blog post that is most unexpected and heart-wrenching for our College of Adaptive Arts Mountain Movers community. This past week we lost one of our truest and long-standing Mountain Mover board members, Mr. Joseph Siecinski. Joe walked into our small, rented space at Randol School in 2010. He was in a full suit and tie (which we later would learn that he wore everyday). He politely introduced himself to Dr. Pam and DeAnna. De and Pam were teaching about 90% of the classes at this time, and we may have had about 30 adult students. He asked what was College of Adaptive Arts, and when we explained that we were creating an adaptive collegiate experience for adults with intellectual and developmental disabilities, he did not blink and eye, and said, “How can I help?” To say that there would not be a College of Adaptive Arts without Joe Siecinski would truly not be an understatement. He quickly joined our board, giving guidance and financial and business support with all of his heart and soul. He helped us to write our very first business plan, which as we look back on now, we achieved within the first 10 years of operation. He formally left the board in 2021 after 8 years of formal service. He stayed on to this day for our regular board meetings, executive board meetings, and monthly financial meetings. He believed in this model through thick and then when it seemed sooooo difficult and tempting to give up. Joe never did. Joe was a most magnanimous, kind, and larger-than-life figure. He *always* told the truth and never glossed over any hard financial findings– but with kindness, integrity, and humility. Through his constant presence CAA has grown operationally that first year in 2009 closing the books at about $65k to closing at over $2million this past fiscal year on June 30, 2025 with another 2 million grant bestowed to us in 2023. When he commended the CAA team on their collective efforts, teamwork, and fiduciary stability this past year at a board meeting, it was a compliment that was genuine and tremendously valued and cherished coming from Mr. Joe. Joe would start any meeting he would attend with, “Happy Monday!!!!!!! or whatever day of the week it was. He made you feel like you were the most important person on Earth to him when he was with you. And his was so positive, knowledgeable, wise, and kind. He just exuded grace, integrity, and hope. Joe was the one who recommended that we read the book Traction by Gino Wickman back in 2019. CAA embraced the tenets and business principles of this book, and it’s been a transformative experience for our business execution. To this day, our staff huddles that we employ each Monday morning before school begins are called the Traction Huddles. Joe would always say that if CAA could bring in $1 for every $1 in tuition, we would be in a financially sustainable position. This is the year that we’re going to honor Joe and bring this sentiment into operational fruition. CAA has been operating in a structural deficit for a number of years now as the demand for our services has outpaced the one and only state funding code that did not pass the rate reform study. There’s significant community and policy momentum and traction to rectify this deficit, and our Q4 fundraising campaign is dedicated to Joe Siecinski. CAA will embrace his spirit and figure out a way to build a sustainable recurring model to reach adults worldwide who want to learn and grow and contribute at their own unique and individual pace. It’s happening, and we vow to keep going until this equitable, lifelong collegiate and workforce model is fully established in communities worldwide to be a beacon of Hope, Joy, Fulfillment, and Traction. This is our Salute to Joe Siecinski.
Sharon Lea has always had a love of music, but it wasn’t until joining CAA that she could actually meld both her passion and her career. Sharon obtained her degree in English from Chico State and worked most of her life in administrative roles. The companies she worked for made products like medical devices, and she always enjoyed customer service and helping people. After surviving a cancer diagnosis and losing her husband all within a three-year span, Sharon took time off work and began volunteering with CAA. That volunteer work quickly turned into a fulfilling career. CAA came into Sharon’s life at a time when she needed them, and when CAA needed instructors who had compassion and commitment to teach. “At CAA, you don’t need the degree but you need the heart,” said Sharon. Professor Sharon is the Director of Music at CAA and teaches many popular classes, including Concert Choir and Music Appreciation. In both those classes, she stresses to her students to find something that they like in the music and reminds them that it’s not about hitting all the right notes. “One of the reasons I love CAA is because I see the benefits of what I’m doing every day in the classroom,” said Sharon. When she was young, Sharon had to overcome a significant stutter so she can relate to the difficulties some of her students have with being heard and understood. Sharon says that she learns just as much from her students as they learn from her, and she loves coming away from classes hearing new perspectives and ideas. According to Professor Sharon, CAA is a unique place to work because the leadership puts people in positions where they can really thrive. “This has been such a wonderful growth experience for me,” said Professor Sharon. “I feel incredibly lucky to be a part of a supportive environment which celebrates caring and collaborative teamwork.”
When Curtis Kitaji was first born, his family was told that he wouldn’t be able to speak. Fast forward many years later, and Curtis is one of the most prominent performers you’ll meet. In fact, his dream is actually to become an actor one day. Curtis takes acting and songwriting classes at CAA and recently was one of the emcees at the Celebration of Inclusive Partnerships Gala, where he received rave reviews. “Being at CAA has helped me come out of my shell,” Curtis said. “I love being on campus and being here with my friends.” CAA’s model for lifelong learning was highly beneficial for Curtis. He attended two other colleges before CAA but had trouble keeping up with the required pace and workload. There have been so many great memories Curtis said he had experienced as a student, and he remembers fondly when his acting teacher showed up to class dressed as a chicken for no reason. Curtis was a participant of CAA’s Cardinal Apprenticeship Program and has learned many new skills, both in class and in his on the job training, that will help him later as he explores new career opportunities. Curtis is a South Bay native and loves participating in various sports. He is part of the Special Olympics bowling team and also an integral part of the CAA golf team. When Curtis isn’t in class at CAA, he enjoys hanging out at the mall with his friends or listening to his favorite band, Pentatonix.
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