It appeared to be a Christmas party like any other, as Club 21’s recent celebration unfolded in the Pasadena Covenant Church amid festive decorations, a visit from Santa and Mrs. Claus, the serving of hot chocolate and hot dogs, and a celebratory fundraiser offering a wide array of holiday gifts and crafts.
Children and young adults eagerly thronged the auditorium to volunteer, visit with friends and dole out excited hugs with live Christmas music, played by the Oak Avenue Intermediate School Orchestra, to which the kids spontaneously danced.
But this was more than just a party. This was a monthly working “2nd Saturday” at the church, a finely tuned educational support program in which children with Down syndrome receive tutoring and specialized therapies that supplement their usual school instruction, and their families participate in speaker series, support groups and learn about research-based teaching tools. Many families travel from all over Southern California — and even, on occasion, from Northern California — to participate.
That’s because Club 21 Learning and Resource Center, a Pasadena nonprofit organization dedicated to providing the educational tools and resources to enable individuals with Down syndrome to be fully included and reach their full potential, has become the largest agency of its kind in Los Angeles County and has earned a regional reputation for cutting-edge advocacy.
“Our job here is to get these kids educated; we’re trying to change the narrative and change assumptions about individuals with Down syndrome,” said Club 21 Executive Director Nancy Litteken, a founder of the nonprofit. “They are individuals with great capacity for learning and contributing. We are changing communities and classrooms and schools by getting these children to be fully included in society and educating the greater public about everything they are capable of.”
Club 21 began as an informal support group more than 10 years ago among local moms and dads who were desperately researching educational options for their children with Down syndrome. The condition occurs once out of every 691 babies born, when a person has three copies of chromosome 21 instead of two, with the extra chromosome causing Down syndrome.
Not long before the club’s formation, the internet had just fully developed to the point “where you could look up anything and get an answer,” recalled Litteken, who had actively been educating her own daughter, Molly, and knew the girl was capable of reading and writing. Yet when she researched Down syndrome, the literature she found seemed rudimental — remnants from institutionalization practices of the 1950s offering dismal advice and predicting an even darker quality of life for the children.
Children with the condition were rarely included in mainstream classrooms at the time, and specialized educational practices were difficult to find within the United States, although some good information was being published in the United Kingdom and Canada.
“If you lived in Canada or the United Kingdom with Down syndrome, you’d lead a normal life and go to a typical school and classroom just like your siblings — you wouldn’t be segregated like here. And the teachers were trained! It was incredible. We thought, this is nuts! Why don’t we have this?”
Litteken set out to learn why. A longtime teacher for the Deaf and Hard of Hearing program in the Los Angeles Unified School District, Litteken was born to two deaf parents and “grew up in the deaf world,” making her innately familiar with learning differences. Other parents sought out her help for sign language or recommendations for speech therapy for their children with Down syndrome, which can cause some speech delays and difficulties.
Club 21 President Eric Gray and his wife, Audrey, were among the founding families of the nonprofit. Their 4-year-old daughter, Estelle, was born with Down syndrome.
“All the parents came together and just started to acknowledge the fact that there were no programs anywhere in the Los Angeles area serving the educational developmental needs of children with Down syndrome,” Gray said. (“Zippo,” interjected Litteken.)
As the group of seven parents began to research and canvass the East Coast and Canada for educational programs, they met other parents with the same hope for their children. Ultimately, the parents led a grass-roots effort to hold a conference and bring educators to speak on the possibilities for educating children like theirs.
The conference sold out, surpassing its 200-person capacity, with people coming from all over California. “We didn’t even have enough seats,” Litteken recalled, and Gray added: “We knew we needed to bring all these programs we’d discovered to one space for the families of Los Angeles County, because there was nothing like it anywhere near.”
Once the nonprofit officially launched in 2009, one of the biggest early advocacy pushes was to inform public school teachers about the newest and most effective methods to teach a child with Down syndrome. Club 21 even stepped in to supplement the Pasadena Unified School District’s budget for substitute teachers so that full-time teachers could attend the class. “All these children are capable of learning, capable of reading and learning math and capable of attending a typical classroom, but they do it differently than typical kids do,” Gray said. “Teachers need to be trained on what those differences are and how to implement them so they can teach to the whole class and not just put the kid with special needs in the back of the classroom.”
Over time, Gray and Litteken said, research is showing that teachers who can teach to children with learning differences actually teach better to the whole class.
“What they are finding is that there are multiple kids in a classroom with similar learning profiles, so they might be visual learners or second-language learners that benefit from repetition and visual aids … so they’re really bringing a more inclusive way to teach to the classroom,” Litteken added.
Many among the first Club 21 members began with older children already struggling in school, and they quickly recognized the importance of early intervention. They made a push for advocating educational programs for children ages 3 and younger with Down syndrome.
“These founding moms made the conscious decision to help serve other children with Down syndrome at an earlier age. We have a very strong culture here, and part of it is that ‘This is not just for your child, it’s for the community that serves all individuals with disabilities.’ You’re part of a movement that will change lives,” Litteken noted.
Today, Club 21 counts more than 400 member families, offering 18 comprehensive educational programs through its Pasadena headquarters. The agency also has become a strong advocacy program, lobbying for statewide, comprehensive legislation allowing families and individuals with disabilities to better access resources and therapies without being penalized financially, as well as establish tax-free savings accounts.
The nonprofit also actively recruited a college fair to come to the West Coast: “Think College” is a national program designed to help young adults with intellectual disabilities pursue higher education.
Altadena resident Pat VanDerVeer’s son, Christopher Mikuni, has been one of the first Club 21 members to reach college. Before attending Cal State Fresno, Mikuni attended school in the PUSD and at Pasadena City College. Currently, he lives independently with roommates and is enjoying the college experience, VanDerVeer said.
“They really support him with meal planning, cooking, laundry and academics,” she said, noting that the support from Club 21 has been invaluable. “This is like another family here. … We come from all walks of life, which is something I love. Down syndrome does not discriminate, so I’ve met people I otherwise never would have met. We’ve become really close over the years. They are the most fun, caring group of parents, and they support me, too — this year without Christopher would be a lot harder without them. They are amazing.”
Nearby, parents and children browsed the holiday gift tables and shouted out to friends they hadn’t seen in a while. Leslie Caldwell and her daughter, Gabby Murdoch, had volunteered to help set up tables at the event, and stopped by to give Litteken a hug.
“The educational experience here has been amazing. We always leave with solutions,” said Caldwell, who recently joined the Club 21 board. “It’s just a great community; this is our village. We would not be as successful without this — it really is life saving and life changing.”
Going forward, Club 21 is actively trying to expand its reach. The nonprofit is seeking more volunteers, such as a dedicated auxiliary parent group that can consistently organize events, as well as technology-oriented adults and youths who might help maintain the nonprofit’s website. For information on donating to or volunteering at Club 21, visit clubtwentyone.org.