By Alex Bruell

UW Journalism News Lab

Catherine Young is acutely aware of the challenges families can face in getting educational resources.

Her son Carter, 5, has a significant speech delay and is being tested for autism.

“There’s almost a grieving process, sometimes, when you learn your kid is not neurotypical,” Young said. “You know they’re going to have more hurdles to jump through. You’re not just raising a kid. You’re fighting for them.”

Last year, the Federal Way woman decided to try to help other parents in that fight.

Young started the Federal Way Special Education Parent Teacher Association in late March 2016 as a way to communicate with other parents and teachers and share advice on raising children with special needs or learning disabilities. Parents and educators in the group meet every other month regularly.

The group, which has now swelled to nearly 100 members on Facebook, provides resources, like post-graduation training and emotional support for tired parents and children. The group even had a special ed movie night on April 21 for children with high sensory sensitivity.

High sensory sensitivity is often associated with the autism spectrum, but any person can have different levels of responsiveness and sensitivity to noises, lights or physical stimulation.

“We turn the lights off and keep the volume low,” Young said. “When everyone else there has the same needs, you don’t feel so different anymore.”

Over the years, Young has seen the school district change from the perspective of both parent and paraeducator. She said that schools have moved towards greater inclusion, a model of teaching that encourages keeping special education and non-special education children together as much as possible.

“These kids benefit society,” Young said. “Disabilities are everywhere. Life isn’t a vacuum where you never encounter them. Your kids might not need specialized education for reading or math, but I guarantee every kid will need help at some point in their life.”

While educators and parents work to integrate special education students with non-special ed classes as much as possible, one area unique to special education is the Individualized Education Program.

In addition to the homework and parent-teacher conferences that most parents are familiar with, students enrolled in special education services also rely on IEPs, which function as road-map documents for the child’s education goals, written by both the parents and the child’s educators.

These plans are complicated, involving numerous educators and service providers. The average IEP can be eight or nine pages at a minimum and much longer depending on the child’s specific needs. The IEP decides many of the accommodations and services that the school will provide a child, and they must be revised every year.

For some parents, understanding IEPs – and their role in drafting them — can be challenging.

“Families working 50 to 60 hours a week can’t go to IEP meetings or volunteer at the school,” Young said.

Jennifer Hartley, vice president of the group, said that even for parents who do attend IEP meetings, it can be unclear how much power they have in deciding their child’s future. Hartley, a former social worker, said she’s been on both sides of the process for getting those children the help they need.

“Parents don’t know what questions to ask,” Hartley said. “Not all schools offer the same program, and parents often don’t know they have a right to choose which schools and programs their kids attend.

Rebecca Kvenvolden, a member of the group, has three children, spanning from second through seventh grade, in special education. Much of their experiences has been good.

“He’s had really great teachers and progressed nicely,” Kvenvolden said of her son Asher, who is on the autism spectrum. “Teachers in particular have gone way out of their way to help us. Our special education teachers work so much harder, so above and beyond the average.”

The complexity of an IEP, however, can mean issues and obstacles still come up despite overall success.

Her son has struggled in his speech therapy, Kvenvolden said.

“…It’s been hard to make up for seven months of missed progress,” she added

For Young, one of the most important goals of her organization is to ensure parents simply know their rights to advocate for their children.

“We want to show people how to request the IEP plan in advance of the meetings,” Young said. “You don’t have to just sign off on it. At any point in the process, you should ask them to stop and explain something if it doesn’t make sense.”

For its part, the district is trying to reach out to busy parents, and the data suggests their efforts are working.

Diana Thomas, district interim executive director of special education, is involved with resources FWPS offers, such as parent-facilitated workshops that provide families with information about special education, or access support like bringing in interpreters, scheduling multiple meetings and inviting outside resources like counselors and therapists when needed.

“We make multiple efforts to reach out,” Thomas said. “We offer workshops on weekends and evenings, since different times work for different families.”

The special education process spans kindergarten through the age of 21, and a student’s plan evolves over time with them.

“When students get to high school level, there’s transition planning,” Thomas said. “We want families thinking about that transition to adulthood before they turn 18. What are their strengths? What are they excited, motivated by?”

For some students, the district employs an employment transition program, which teaches older students job and other life skills. Based on surveys and data collected by the district, the programs appear to be working. In 2015, just over 80 percent of district graduates who used IEPs were engaged in higher education or competitive employment. Statewide, that number is just over 60 percent.

Beyond the statistical improvements, the life of just one child can be radically affected by the quality of education they receive.

Young, who was diagnosed with dyslexia and Attention Deficit/Hyperactivity Disorder at an early age, said she couldn’t read until the third grade because of how poorly her Maryland elementary school handled special education.

“I remember being petrified at speaking and reading in class,” Young said. “As a parent, all those fears were reawakened. I realized when I had Carter that I did not want him to ever live that life. He talks about wanting to be a police officer when he grows up. I don’t know if it’s realistic for him yet, but I’m absolutely not going to tell him it’s not. I want him to get married. I want him to have kids, if that’s what he wants.

“I want him to know he can have these things,” she added.

For more information about the Federal Way Special Education Parent Teacher Association, contact Young at 206-707-3351.