First published in the May 19 print issue of the Pasadena Outlook.
With graduations quickly commencing across the region, local mom Pam Grassedonio can hardly believe her youngest daughter, 14-year-old Amanda, soon will be finishing middle school and then off to high school.
Though the accomplishment might not seem out of the ordinary, the Grassedonios can still acutely remember when, just some 10 years ago, they were discouraged from attending kindergarten at a public school. In fact, they were told they couldn’t.
“They told me kids with Down syndrome can’t be fully integrated into public schools, that it just doesn’t work. They told me kids with Down syndrome can’t read, can’t learn… they told me so many things that were just not correct,” Grassedonio recounted.
As a parent of a child with Down syndrome, the years may be short but the memory is long when it comes to recalling the obstacles in trying to get Amanda the best education and opportunities available.
Starting at the very beginning, Grassedonio’s doctor gave her a dismal outlook when her baby — still in utero — was diagnosed with Down syndrome, the condition when a person has three copies of chromosome 21 instead of two.
“My doctor literally told me that I was going to ruin my life if I had this baby,” she said, mustering a laugh at the memory, as inconceivable as that advice was. Today, Amanda is a happy, book-devouring teenager who loves to socialize and is the light of her family.
Meanwhile, Grassedonio is making it her mission to help educate others by joining the staff at Pasadena’s Club 21 Learning and Resource Center, a nonprofit dedicated to providing the educational tools and resources to enable individuals with Down syndrome to be fully included and reach their full potential.
Since its founding in 2009, Club 21 has become the largest agency of its kind in Los Angeles County and has earned a regional reputation for cutting-edge advocacy.
As the Club 21 coordinator for the First Steps Program and medical outreach, Grassedonio provides guidance to families who have received a Down syndrome diagnosis.
“My job isn’t to tell families what to do, but to give people a full picture, because when you’re sitting with a doctor or geneticist, they might not understand the full picture or they might have incorrect ideas that are very outdated,” she noted, nodding to her personal experience, while also providing insight into navigating how to procure resources from regional centers.
“Like any child, the first few years are critical to get that early intervention,” she said. “Getting parents on board in the community of Club 21 is very important so they can benefit from all this shared knowledge.”
From the first diagnosis onward, Club 21 empowers families to identify the needs of their child with Down syndrome and teaches them how to navigate the terrain of the medical, educational, and Regional Center systems to maximize their child’s potential.
Through its educational pathway, Club 21 is changing the narrative of Down syndrome and opening doors so that individuals with Down syndrome can be fully included and live, healthy, self-determined and fulfilling lives.
“One of the most beautiful things about Club 21 is the development of a rich community — those who come here are passionate about our kids and passionate about inclusion. This is not just for your own child… this is for the culture and the community at large,” said Club 21 Executive Director Nancy Litteken, a founder of the nonprofit.
“We’re trying to change the narrative and change assumptions about individuals with Down syndrome,” she added. “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 can contribute.”
Litteken began Club 21 more than a decade ago as an informal support group among local moms and dads who were desperately researching educational options for their children with Down syndrome.
When she began researching ways to help educate her own daughter, Molly, Litteken was shocked to find rudimental literature rooted in remnants from institutionalization practices of the 1950s, offering dismal advice and predicting an even darker quality of life for the children.
Through Club 21, hundreds of 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.
The club has even created educational curriculum for tools to teach visual learners, educating public school districts and teachers about better ways to educate students with learning differences.
Many families travel from all over Southern California — and even from Northern California — to participate. During a recent “2nd Saturday” monthly meeting at the Pasadena Covenant Church, Club 21 parents and children happily mingled and greeted each other with long hugs and broad smiles. The pandemic forced the group and their many educational and support programs online, so returning to in-person meetings has felt joyous to members, who have come to rely on the community and social interaction that comes with the nonprofit organization.
Grassedonio warmly greeted parents walking by, with a casual “call me later” or “let’s talk.” The former corporate Disney executive now expertly guides families through an IEP, or an Individualized Education Program.
“Sometimes I think when school officials say ‘IEP’ they forget the ‘I’ stands for individual, because they only see the face of someone with Down syndrome, and they make all these assumptions before they even know the child,” she said.
Even though Grassedonio believes progress has been made in early intervention and education for children with Down syndrome, she is still fighting the good fight every step of the way. Just recently, she battled with her daughter’s school district to let her eat lunch with the mainstream students and use the locker room for physical-education class.
“These actions we are taking now are helping families down the line. Sometimes we don’t see how much we are moving the needle until later, but I am definitely seeing changes and building on what other parents did before me,” she said, referencing a Steve Jobs speech in which he highlighted that a person can only see where lines connect in hindsight.
She paraphrased, “An incredible part of this job is that I’m looking behind me and I’m seeing all these connections and how the culture is changing — it’s not happening as fast as I want it to, but it is happening.”
Club 21 welcomes and encourages volunteerism at its organization. For more information, visit clubtwentyone.org.