A Riveting Parent Perspective

May 19, 2019

How do I begin to describe the wonder we named Kaleaha Marie Maldonado? We have been blessed to have her in our lives for 30 years. We were told average life expectancy of a Jacobsen Syndrome child was 2 years old. We were told this by a genetic counselor when she was 3 years old. That pretty much sums up the information from 1970 we had until Kaleaha was 5 years old.


Around this time, I learned of the human Genome Project: The main goals of the Human Genome Project were to provide a complete and accurate sequence of the 3 billion DNA base pairs that make up the human genome and to find all of the estimated 20,000 to 25,000 human genes.


How did this affect us? Thirty-five families from all over the USA agreed to meet at Southwestern University in Dallas Texas. It was going to be a costly trip, so we needed help. A wonderful radio show team called The Dog House the hosts JV (Jeff Vandergrift) and Elvis (Dan Lay) helped us out by doing a fundraiser. JV swan from Alcatraz Island to pier 39. JV did it! His team and listeners Raise enough money and got us to Dallas Texas.


We all met there, and that evolved into the 11Q R&R USA group. You can learn more about that by looking up 11qusa.org. That was the beginning of a parental community that help me navigate the rest of Kaleaha’s educational years. I learned about IEPs and different types of programs to request assistance for.


Kaleaha’s educational learning started with regional center programs like early intervention programs. She had to learn sign language at 1st since she couldn’t verbalize well until after age 3. She was having multiple ear infections, and it took until this age to get her treatment to remove fluid from behind her ears to allow her to hear our voices. Prior to this her hearing was as if she was underwater.


Kaleaha continued from 18 months all the way through 22 years old in the public education programs. After the age of 22 we had a few special day programs that we tried out for adults. This is where most of our difficulties began, we tried the various programs that would allow a 1:1 aid to assist Kaleaha. After trying the multitude of adult special day programs that were available in our area. I was pretty much ready to give up.


We switched Kaleaha to the Independent Living Skills program known as ILS. This worked out well for a little while a couple of years in fact. Then we ran into difficulty with staffing so now we started using different companies. We always ran into the same problem staffing. It was never consistent, and this seriously affected Kaleaha’s mental and cognitive abilities, severely triggering her negative autistic tendencies.


We were incorporating ABA Therapies at the same time as using the ILS services, so we were able to hunker down refocus and bring her out of the cycle. Then we started looking for new programming. With a referral we visited College of Adaptive Arts. We visited this campus. We were skeptical at first about its functionality with an individual who required a 1:1 aide.


Kaleaha’s ILS service provider thought it was worth a try she was very impressed with the progress she saw with her other clients. My fear held me back for a little bit, but I really wanted to get Kaleaha into a program that would provide her with more normalcy like she had throughout her previous educational years. I thought, “Well let’s give this a try.”


We selected some courses and arranged various caregivers. Kaleaha started her first day at College of Adaptive Arts. It took a little bit to find her groove but once she did, she took off like a rocket! She started participating in programs that got her back out into the community. Classes that rekindled her love with cheerleading. Reading and speech have become new interests for her. She participated and several events and her collegiate career has been on a fast track at lightning speeds ever since.


As a family, we do not believe Kaleaha would have accomplished the amount of success and overcome the many hurdles that she overcome had not been for the staff and programing at the College of Adaptive Arts. They have formatted a program that seeks out abilities and applies the knowledge to format a curriculum that allows individuals with different abilities to prosper and shine like the superstars they are.


Kaleaha is one of the lucky students to have found the wonderful staff and program that is The College of Adaptive Arts. Please come a visit the program there is nothing to lose, but everything for your student to gain.

 

Where the System Ends, CAA Begins. We Built the College We Couldn’t Find. CAA Story #9: CAA Steadfast Mountain Mover Joe Siecinski

By DeAnna Pursai • April 20, 2026
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.

Where the System Ends, CAA Begins. We Built the College We Couldn't Find. CAA Story #8: Professor Sharon Lea

By DeAnna Pursai • April 13, 2026
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.”

Where the System Ends, CAA Begins. We Built the College We Couldn't Find. CAA Story #7 Curtis K.

By DeAnna Pursai • April 6, 2026
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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