Every week, I get another email from a stranger. These strangers are friends of friends, parents of kids with special needs. In each case, they’re desperate for advice on navigating the special education system.
A few years ago, I was in their shoes. My daughter, Charlotte, was diagnosed with autism when she was 5. Because she was a December baby, she was still in preschool. Kindergarten was looming, and I was overwhelmed by her diagnosis and confused about our options.
My initial response was to turn to experts for advice. I asked her preschool teacher what sources of support Charlotte would need to enter a general education environment in kindergarten; her recommendations didn’t seem sufficient. Next, I went to her autism specialist only to be told that support for kids like Charlotte are often hard to come by. I appreciated the specialist’s honesty, but it didn’t help me figure out the best placement for my daughter.
Then I scoured the internet for resources. I learned a lot about the laws that govern special education, but it was hard to find information about local programs and services. Ultimately, I found the information I needed thanks to a Seattle-based Facebook group for autism moms — a higher-tech version of the emails that often land in my inbox.
My daughter is 9 now and entering fourth grade. I’m confident that she’s attending the best program for her in Seattle, but I’m left with one very uncomfortable takeaway: My daughter is where she is because I have the tools to research our options and I fight for appropriate placement. That privilege isn’t available to everyone, and the quality of a child’s education shouldn’t be left to chance.
That’s why I’ve compiled these tips from veteran parents and an expert in special education. This information can help parents identify their child’s needs and work with the school district to meet them — or know their options when their child’s needs aren’t being met.
Separate the challenges
When your child is struggling in school, it’s easy to become overwhelmed. While it’s tempting to look to the school to solve the problem, conversations always go better when you go into them with a good sense of what’s happening and what needs to be done.
One way to tackle this is by separating challenges into categories and learning who is responsible for solving each type of problem. Sivan Tuchman, Ph.D., a research analyst at the Center on Reinventing Public Education at the University of Washington, Bothell, emphasizes that kids with special needs face two very different types of challenges: practical and policy.
“When it comes to practical challenges, we’re talking about bullying, materials that are too difficult, not understanding directions, challenges making friends and more,” says Tuchman. “Then there are more policy-based challenges that students don’t face directly, but parents and school officials might — things like testing expectations, difficulty getting needed services such as speech therapy, counseling and occupational therapy or whether students are educated with their nondisabled peers or not.”
While both types of challenges impact students, Tuchman emphasizes that the solutions are very different. Practical challenges, for example, can often be dealt with in the classroom, whereas policy challenges may involve administrators or even federal laws.
Know your child’s rights — and what that looks like in your district
The primary law that protects students with disabilities ages 3–22 is the Individuals with Disabilities in Education Act (IDEA). The main element of IDEA for parents is the individual education program (IEP), which is a contract between the school district and family stating that the student will be provided with the services necessary to meet the student’s goals laid out in the IEP.
There are many rules and regulations in IDEA pertaining to what it means to provide a free and appropriate education (FAPE), how to identify students for special education, how different disabilities are defined and the rights of parents who choose to place their students in private schools.
In principle, what constitutes a FAPE should be the same no matter where you live or where your child attends school. In practice, it varies by district and even by school. While the Supreme Court ruled in March that special education students have the right to “appropriately ambitious” academic progress in a FAPE, it’s still a definition that’s difficult to standardize. Likewise, one of the primary tenets of IDEA — that special education students have the right to be educated in the least restrictive environment — is problematic in its application.
Some schools, like my daughter’s, offer a push-in program (in Seattle Public Schools, it’s called Access), in which students receive special education services alongside their general education peers. Other schools in Seattle offer a hybrid of special education and general education for children who need more support; that program is called Focus.
These are only two of a variety of service models for special education, and navigating these options can be overwhelming. Little information about these service models is made available to the public, their names are changed frequently, and each district has their own service model and names for special education programs.
Ultimately, special education placement decisions are made by the school district — not the parents. But knowing your child’s rights and what’s available in your district is critical for ensuring that your child is placed into the most appropriate model available. Local groups for special needs parents are the best way to arm yourself with this critical information.
“A Washington state education ombudsman . . . said that the system is set up to be adversarial,” says Marianne Bryan, a Seattle mother of three kids on the autism spectrum. “Accept this and work with the knowledge you will need to be a strong advocate to get your child’s needs somewhat met.”
Schools and service models aren’t your only options
When my daughter began attending applied behavioral analysis (ABA) therapy every afternoon, we quickly ran into trouble with her principal about her attendance. He even threatened to report her as truant! Once I involved the school district, the special education representative I met with told me a surprising fact: Kids in Washington don’t have to attend school full-time until age 8. Even after age 8, parents can file their children as partial home-schoolers to create a school-day schedule that works for their family.
For my daughter, full days at school have never been successful. The amount of stress and anxiety school creates leads to meltdowns or shutting down entirely. While lengthening her school day is a goal, it’s not at the top of my list. I’m more concerned that she’s happy and accessing the autism therapies she needs to continue to grow.
While attending school part-time isn’t the best option for all kids, it’s important that parents understand they have the right to decide how and when their kids attend school.
Be prepared for a fight
In a perfect world, special education staff would be our support network as our kids navigate the school system. Unfortunately, that’s rarely the case. Even teachers and staff with the best intentions are constrained by budget cuts and overburdened caseloads that leave our kids in the lurch.
Tonya Haws is preparing to send her 5-year-old son to kindergarten this fall. She was dismayed to learn her son wouldn’t be able to attend her neighborhood school, and will instead be bused to another location. “We were really upset about that,” she says. “We were only given the option to send him to [the other school] and told we cannot keep him in preschool another year even though he just turned 5 in July so will be the youngest. Something about losing special education money for the district?”
While schools often cite financial constraints as a reason for failing to provide necessary services, Tuchman notes that’ not an acceptable excuse: “The school or district can never tell you that a service can’t be provided due to financial constraints.” But knowing our kids’ rights isn’t always enough to get them the services they need.
When problems arise, the best place to start is with the school. Parents can call an IEP meeting and gather their child’ team at any time; you don’t need to wait for an annual review. If that meeting isn’t enough to solve the problem, you can request that a district special education representative for your region attend the next IEP meeting. In the past, I’ve had to go to yet another level, requesting that the primary special education liaison for our district attend. All of these contacts can be found on each district’s website. You can also involve the Washington State Office of the Family and Children’s Ombuds.
“If you are ever concerned with your student’s special education services, talk to your student’s special educator,” says Tuchman. “Don’t wait until you’re frustrated or angry that something is not going the way you hoped because, by then, you might be less happy with any solution available.”
The final resort available to parents is filing a lawsuit or due-process claim against the state. It can be a lengthy process that won’t address kids’ needs in the meantime, but it’s an option parents shouldn’t be afraid to use. But before parents take that step, Tuchman recommends they bring an advocate on board.
“At times, inviting an advocate can make IEP meetings feel more adversarial, but an advocate’s presence can sometimes encourage school officials to defer to the parent more often than usual,” she says.