Parents want their child to fulfill their potential and get the best education possible, but for parents of children with special needs, it can feel like a constant battle. For many of these families, the return to in-person learning does not mean a return to normal.
"Even when you are struggling with that you have to put on a happy face," said Lucia Babb-Rodriguez, a mom and the program director at Fiesta Educativa, Inc. The nonprofit helps train and teach parents, particularly those in low-income Latino communities, to advocate for their special needs children.
Her 10-year-old son Ian is sitting out at the start of the new school year. He's too young to be vaccinated and with his severe asthma, his mother didn't want to risk him getting COVID-19 in a classroom. His Individualized Education Plan didn't call for Zoom school so now, his mother is using a tutor and is fighting to get his plan changed.
"It makes you feel bad as a parent that you are not fulfilling their needs," said Babb-Rodriguez." I need to be on the phone, I need to be emailing, I need to be on it every day."
Her case is far from unique. The full impact of the pandemic on these families is still unknown but Carolina Navarro has seen them firsthand. She is the parent coordinator at Fiesta Educativa and mother to 8-year-old Eduardo, who has autism and ADHD.
"He was doing great before covid but then the pandemic hit," she said, explaining that so much screentime during Zoom school made him so anxious that he started biting himself.
She's grateful he's now back in school but knows there will be more challenges ahead.
"There are a lot of pieces that make our journey hard and stressful," she said.
Babb-Rodriguez is from the San Gabriel Valley and Navarro is from Victorville. Both women asked we do not name the schools their children attend because they say the problems are not specific to districts or regions, instead, are widespread.
"Now more than ever schools need to collaborate with families," said Samantha Toews, an assistant professor of Special Education at Cal-State Northridge. The best thing schools can do right now is make space for teams to be flexible.
She surveyed parents of children of special needs during the pandemic and found that 89% reported increased mental health problems in the adults in their homes. Most of the parents also reported trouble sleeping and almost half had an increase in physical strain as they cared for disabled children on their own. She adds that in-person learning is in the time of Covid is also more complicated for these parents.
Many of the families have kids who are under the age of 12, she explains and have underlying conditions but are too young to be vaccinated. Children with cerebral palsy may be at higher risk for pneumonia and children with sensory issues, or those who have weak muscle tone, may struggle with wearing a mask. Toews says that leads to compounded concerns for some parents, who worry their child could catch coronavirus and also worry that they may be further ostracized if they can't keep a mask on.
"This is not a normal time, you are not the only one struggling," said Babb-Rodriguez. She advises parents to remember their child is entitled to an equal education and says it's important to ask for your options and know you rights.
She says children with special needs are often treated as second class citizens, but they have equal rights under the law. In fact, she says when parents feel powerless they should know the law empowers them.