The pandemic has had a real impact on special needs families and programs. Here’s how they adapted and what they’ve learned.
Chinh Tuong Nguyen’s son, Patrick, was born on July 5. He rarely cried during his first 8 months, even when he had the chickenpox.
“I thought it was very normal and I was a lucky mom at first,” says Nguyen.
But after his first birthday, Nguyen started to question why Patrick did not respond to his name or eat, talk and play like other kids in her extended family. After seeking out answers and doing a lot of research, Patrick was eventually diagnosed as autistic. Nguyen connected with the Regional Center of Orange County, a non-profit organization dedicated to serving individuals with developmental disabilities and their families, and Patrick entered their Early Start program at 15 months of age.
Patrick was getting the help he needed at RCOC and using activities like swimming to help his mental and physical health. Then the pandemic hit.
“Due to the social distancing restrictions, Patrick is unable to continue swimming for now, which is something that helped him improve in lots of ways. This adjustment has been a struggle,” says Nguyen, who was recently appointed to serve as a volunteer RCOC board member. “We must always give our children activities and help them learn.”
That has been harder to do as the pandemic has increased isolation and limited services for kids with special needs.
Special education includes a range of needs, from students who need extra help with reading to children with visual or hearing impairments, to children on the autism spectrum.
The pandemic has presented challenges that are unique to each special needs group too. For example, according to the Global Down Syndrome Foundation, children and adults with Down syndrome are especially vulnerable to the coronavirus because of conditions such as sleep apnea that commonly accompany the syndrome.
“Many families have taken especially stringent precautions, including home isolation, which has been difficult on everyone, but especially those who blossom with social interaction,” says Martha L. Hernandez, in charge of community outreach at GiGi’s Playhouse, a non-profit that supports individuals with Down syndrome.
And while Zoom works for some groups, it has proved insufficient for others.
“Virtual platforms rely even more heavily on vision. That doesn’t work for our children who rely on hands-on, multi-sensory education to fully access learning like every other child,” says Angie Rowe, president and executive director of Santa Ana’s Blind Children’s Learning Center (BCLC).
Changing How We Connect
YMCA OC, which offers an Inclusion Program designed to provide children with special needs and/or challenging behaviors the opportunity to learn social skills, independent living skills and manage their own behaviors, says that in these pandemic times, it’s that much more important to connect and communicate. Making a plan to regularly stay in touch with your community during physical distancing and checking in is key.
The BCLC has kept lines of communication open with their community and made considerable changes to meet their students’ needs.
“We reintroduced in-person therapeutic services in May 2020 and reopened our toddler classrooms in August 2020,” says Rowe. “At this time, a majority of services are safely taking place in person due to the robust safety measures in place. Virtual options remain available for families who prefer that option.”
BCLC, which is a non-profit organization, is dedicated to preparing children with visual impairments and other disabilities for a life of independence. They do so through a variety of comprehensive programs that are designed to help children with visual impairments thrive in a sighted world. Programs like Global Infant Development for newborns to 3-year-olds provides essential early intervention and family support to children and their families while a class called Youth Outreach for K-12 grades supports educational needs of elementary-, middle- and high school-aged children.
Since lockdown in March 2020, BCLC has gained a better understanding of how to keep children safe and is providing essential services and in-person learning in family homes to 85 percent of BCLC clients. The remaining 15 percent of students are served inside BCLC classrooms.
One way BCLC accommodated its students was by adapting the entire facility in North Tustin to create optimal distancing. The classrooms are now organized into small “cohorts” that attend school on alternate days.
“We also reconfigured several rooms to create additional therapeutic space, and when our Low Vision Clinic reopened, it did so at reduced capacity,” Rowe says. “This all requires ongoing adaptability from parents and direct-service providers.”
GiGi’s Playhouse has also adapted by launching GiGi’s at Home. The non-profit network of achievement centers provides numerous educational and therapeutic programs aimed at advancing skills in literacy, math, muscle tone, speech, cognition and more for individuals with Down syndrome. Signature programming includes speech and language development, social development, gross motor development, academic support, health and wellness, to name a few. Two weeks after all physical locations were forced to shut down in 2020, GiGi’s at Home was launched.
“GiGi’s at Home offers free purposeful programming no matter where participants are located,” Hernandez says. “Even though it was created due to the pandemic, we discovered the enormous benefits of expanding our reach beyond the physical locations, so that every family with a loved one with Down syndrome can now access hundreds of hours of purposeful programming.”
GiGi’s at Home Live and On Demand programming includes classes like GiGi’s Kitchen, dance, yoga, GiGiFIT and Fantastic Friends.
GiGi’s Playhouse also put together a start-up committee in Orange County right before the pandemic in an effort to bring an achievement center to the OC community.
“The pandemic hit right when we were just starting to raise awareness and growing momentum among the community,” says Hernandez. “At first, we thought we had to put everything on hold. When GiGi’s at Home was launched, suddenly we had an opportunity to show OC parents all of GiGi’s Playhouse programs.”
Orange County families were able to experience GiGi’s Playhouse for themselves without having to wait for the physical location. Mission Viejo mom April Swerdfeger and her daughter, Lona, took to GiGi’s Kitchen program.
“GiGi’s Kitchen is Lona’s favorite activity that she looks forward to every week,” Swerdfeger says. “She has learned to follow instructions patiently, as they lead to something yummy when we’re done. We have made several new dishes that have become family favorites.”
Gathering the family in the kitchen and cooking a family meal together is also another way to create strong, bonding memories and support one another, according to YMCA OC. Not only can playing, cooking and moving together help families cope during stressful times but movement and exercise have been proven to increase mood, increase metabolism and strengthen the immune system, which are of course necessary during a pandemic.
GiGi’s Playhouse is still working to open a physical location in Orange County with a projected date of October 2021.
For some organizations, the disruption has led to innovation. Programs like the Young Scholars Academy have been born out of the pandemic. The Young Scholars Academy offers passion-based courses to small groups of neuro-divergent students online.
Samuel Young, director of Young Scholars Academy, has taught twice-exceptional, or 2e, students for over a decade. The term 2e is used to describe students that may have exceptional ability and disability. They are gifted in some ways, but can also face learning or developmental challenges.
“Over the summer of 2020, I was talking to tons of parents that were feeling hopeless about how their children’s schools were responding to the pandemic. Many of them came to me and asked me to do something, so I did.”
Young developed the Young Scholars Academy.
“At first, I thought I was going to run an in-person micro-school,” Young says.
He initially looked at locations in Santa Monica.
“The more I thought about it, the more I felt like I was fighting the universe,” Young says. “Everything had just gone remote, and there were a 1,000,001 reasons not to teach in person anymore. Then it clicked! I should create exactly what I dreamed of, but online. This way I could serve even more students.”
Today, the Young Scholars Academy is an online enrichment program that seeks to provide 2e students with transformative educational experiences that serve to develop their love of learning, personal character, self-awareness and exceptionalities. Two new classes that recently launched include Young Writers: Storytelling Through Pixar and Young Biologists: Creatures of Habitats.
Young believes the pandemic could be a real catalyst for progressive education. He advises parents to use this time to get involved with their children’s learning process.
“Get your students thinking about their thinking. Do they know how they like to learn?” Young says. “Help them advocate. Their teachers may only see their difficulties. Help them find their voice to connect with their teachers and receive the accommodations they need, even if it’s something simple like more choice in projects.”
Expanding the Community
People with disabilities and their families often experience isolation. Nguyen says she sometimes felt discouraged from talking about Patrick’s special needs, especially early on.
“As a parent of an autistic child, I also struggle with the fact that many in my cultural community place a stigma on parents with special-needs kids,” says Nguyen. “Hiding our children’s conditions just because we are too ashamed is not only going to not get the needed resources our children need but also not going to get them to where they need to be. I believe we have to accept who we are and there is nothing to be ashamed of.”
YMCA OC recommends seeking out support groups online and expanding your network of parents with special needs children. Sharing experiences and growing your community will come in handy not only now, but when the pandemic comes to an end, and your support community will be even bigger.
Capistrano Unified School District has taken steps to expand the community of families in their special education program by launching an essential forum where special education parents can speak with a school administrator and other parents.
“There wasn’t a space where parents could talk to other parents and learn more,” says Rachel Sutherland, who chairs the district’s Special Education Community Advisory Committee.
One aspect the forum plans to address is the transition from elementary school and generally learning from a single teacher in a single room to middle school where students move to different classrooms with different teachers for different subjects. In the essential forum, special education parents will have the opportunity to speak with a school administrator and other parents who have overseen their child’s transitions.
“It’s a big jump, just like it is for general ed students,” Sutherland says.
Using Your Resources
Nguyen says RCOC has remained open and has continued to provide services during the pandemic, although as a public health precaution, people cannot enter its offices.
“However, children and families continue to receive services safely,” she says.
And she found alternatives to Patrick’s swimming routine.
“Though Patrick had to pause going swimming for now, he has found other things to do at home such as learning about continents and observing his globes. He loves to watch videos containing logos and jumping on his trampoline,” Nguyen says. “Patrick is very active, so we try to get him moving and staying active.”
Tilly’s Life Center is a youth-focused non-profit charitable foundation dedicated to empowering teens by enabling them to effectively cope with crisis and adversity. In response to the pandemic, Tilly’s Life Center has aligned with RESET Toolbox, a collection of resources and trainings to build resilience in children and teens gathered by Western Youth Services.
“Western Youth Services collaborated with several organizations, including Children’s Hospital of Orange County and Orange County Department of Education to pool their knowledge base, relationships and resources into one online mental health toolbox. Tilly’s Life Center is one of the resources featured in the RESET Toolbox,” says Monica Utley, executive director at Tilly’s Life Center in Irvine.
Everything in the RESET Toolbox is available at no-cost for residents of Orange County thanks to funding provided by the Orange County Health Care Agency, Behavioral Health Services and Coronavirus Aid, Relief, and Economic Security (CARES) Act. The RESET Toolbox was made for students K-12, caregivers, community members and teachers to address the negative effects of COVID-19 so that participants can build resilience and be emotionally equipped to succeed during and after the pandemic. Specifically, Tilly’s Life Center is offering two trainings. A social and emotional learning program called “I Am Me” is a virtual program designed for high school students and teachers, while “I Am Me” Training the Trainer is aimed at teachers only.
While the RESET Toolbox isn’t necessarily geared toward students with disabilities (all K-12 schools and youth-serving organizations can benefit from the resources offered), Christine Carey, associate vice president of academic affairs at Tilly’s Life Center, says those with disabilities may benefit particularly from tools that help them cope with the further disruption and distance from the feeling of normalcy that COVID-19 has caused.
“Many of the students with disabilities that we previously worked with felt more comfortable with a virtual format,” says Carey. “We saw students that struggled before thrive and adapt faster than their peers. However, we know that ‘students with disabilities’ is a very diverse population with vastly different needs. We are aware for some students virtual learning and isolation has been a struggle.”
Carey and Utley say there are many organizations and individuals working hard to offer free resources to teens with disabilities. Tilly’s Life Center will be offering free workshops in the month of May to all adolescents.
YMCA OC urges families to use state and local resources too. California’s State Council on Developmental Disabilities has activities available and the Orange County Health Care Agency is offering free online parenting classes. (You can access this parenting support on the YMCA website, https://ymcaoc.org/inclusion/)
And when it comes to advocating for your special needs child, Nguyen says it’s important to learn everything you can about our children’s therapies so you can use proven techniques at home to reinforce the work of professionals on the job.
“Three years after beginning services for Patrick, I’m more comfortable and now feel that I understand what was happening and what might happen in the future with Patrick,” says Nguyen. “I’m also prepared for what I need to do to help my kids grow healthy and happy.”
Nguyen is a budding bilingual activist for special needs children, and encourages other parents not to give up.
“To me, making sure my kids are doing well academically, mentally and physically are extremely important,” says Nguyen. “We are lucky to live in a culture that values support and guidance, with so many tools that do not exist in many other parts of the world.”
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By Sarah Mosqueda