It can be an emotional time for parents when their child is diagnosed with a learning disability. Help is available.

For parents, witnessing their children achieve milestones is one of the most gratifying moments in their lives. “Every step they take, even a small one, is a giant leap for us. As parents, we are very proud of what we have achieved with our children, and we are going for more,” Leidy Gomez says in Spanish. She is a mother with three sons on the autism spectrum, ages 10, 7 and 3.

Gomez says her oldest was diagnosed with autism when he started first grade. She says she didn’t know much about the disorder and she started paying more attention once her son’s teacher told her he needed additional support.

Shock, denial and guilt are some of the emotions parents might go through when they learn their child has a disability.

“They don’t want to accept the help, because accepting the help means acknowledging that there’s something wrong with your child,” says Monica Andrade, a playgroup facilitator for the nonprofit Door to Hope. She works with kids 0-5 years old.

Experts say for many parents, their children’s diagnosis is their first encounter with a disability and they can feel overwhelmed, especially when navigating the process to receive aid.

“If you were diagnosed with cancer, you probably would have a primary care physician that would help navigate all those services for you. But when you have a child with a disability, there is no primary care physician of sorts to be able to provide that navigation,” says Lori Luzader, executive director of Special Kids Connect, a nonprofit organization that provides resources and support to children with disabilities and their families.

Satwat Rais, director of special education at Alisal Union School District, says not every child is tested for a disability; a medical diagnosis or letters from parents and caregivers reporting developmental delays will trigger testing. At AUSD, many students receive speech therapy. Since many students in the district are bilingual, there is another factor at play when testing them. “Is it an actual deficit in speech, or is it just second language acquisition?” Rais says.

Luzader says most parents need aid navigating the educational system, whether their child qualifies for special education services, understanding how the system works, and what they can do to advocate for their child and participate in the decision-making process on the services their child will receive.

School districts, Special Kids Connect and Special Education Local Plan Area in Monterey County (SELPA), which is responsible for guaranteeing available programs for students with a disability in public schools, provide workshops for parents on special education.

Mariposa, a parent support group in South County, and Special Kids Connect offer support group sessions where parents of children with disabilities share their experiences.

“That peer-to-peer support is so helpful,” Luzader says. “To be able to sit in a room with other parents that have been overwhelmed and have managed to navigate the system and get over those hurdles and those challenges, is super important.”

“It’s a learning process among parents; we have to help each other,” Gomez says, noting that sharing experiences with other parents and having a supportive spouse have helped her to keep going. She focuses on the positive aspects and the steps her sons are accomplishing, such as using pictograms to communicate or making a quesadilla by themselves.

Once a child has an educational diagnosis (such as a learning disability or language impairment), school districts form a team that includes a parent or guardian, a special education teacher, an interpreter if needed and others to create a plan called an Individualized Education Program (IEP) for the student based on data and the student’s needs.

Having a medical diagnosis for a disability, for example, doesn’t guarantee a child will automatically qualify for special education at school.

“We’re looking at how, if there is a disability, it is impacting their education,” Rais says.

Parents and experts say it’s important for parents to have an active role in their kids’ EIP and to have both parents on the same page to generate a comprehensive plan.

Gomez’s 7-year-old son is nonverbal, and she learned about one-on-one instruction through Special Kids Connect. She says she advocated for one-on-one instruction for her son, and after several evaluations, it was determined he needed that level of service.

In California, regional centers through the state’s Department of Developmental Services diagnose and provide services for children from birth to 3 years old. At 3, the responsibility in most cases shifts to school districts, even if the children aren’t enrolled in an early education program or class. 

According to the National Center for Education Statistics, during the 2022-23 school year, 7.5 million students, or 15 percent of those enrolled in public education, ages 3-21 received special education or related services under the Individuals with Disabilities Education Act, also known as IDEA (California is below the national average with 14 percent). 

AUSD has a student population of 7,500; roughly 1,100 have an IEP.

Rais says some factors have increased the number of students in special education. For example, districts are better at evaluating students, while parents’ requests have increased.

“More and more parents want their children evaluated, which is slightly different from what happened 20 years ago,” Rais says. “The awareness is there. The support is here.”

While awareness has increased inside and outside the classroom, parents say the community should offer more empathy, and there should be more resources available to create more inclusive spaces among children and adults.

“It would be wonderful if the community taught its children not to discriminate because someone has a condition [a disability],” Gomez adds.