A parent’s guide to knowing your rights and navigating the process.

It’s December 2013. My husband and I sit around a tiny table in a brightly decorated preschool classroom—we’re nervous newbies at our first IEP meeting for our son Kaleb, who has Down syndrome. Joining us are Kaleb’s future preschool team and our speech therapist from Early Intervention, who has volunteered to help us navigate this huge transition. Unsure what my role is, I wait quietly for someone to begin, secretly wishing we could just go on enjoying therapy from the comfort of our living room.

Only days before I’d stood at the front door of our house, Kaleb in my arms, and watched our beloved EI coordinator walk away for the last time, my teary-eyed smile and tentative wave revealing how uncertain the future felt.

Ask any parent navigating this transition with their child with special needs and you will hear stories full of uncertainty. By the time Kaleb approached his third birthday (the age at which children transition from in-home to school-based services), we’d gotten earfuls of IEP tales from other parents, ranging from success to disaster. I wondered, what’s the secret to success? Five IEPs into Kaleb’s school journey, two things consistently stand out: Know your rights and build trusting relationships with your child’s education team.

Knowing Your Rights

Understanding what your child is entitled to can be complex, since an IEP is just what its acronym reveals—an individualized education plan. It’s a legal document that outlines a child’s specific diagnosis and education goals. It also provides a “service delivery grid” detailing the exact units of service required for a child to reach these goals, along with any unique information about the child that might impact success.

Knowing how to read these documents can be hard enough; understanding your role in helping shape them can be even tougher. Many states have non-profit organizations that help parents make the first leap into the IEP process by holding workshops that teach basic rights and what resources are available at town, state, and federal levels. These workshops are indispensable when preparing for that first meeting with your child’s education team. We attended our first one through the Massachusetts non-profit Federation for Children with Special Needs when Kaleb was 2.

Since Kaleb received a diagnosis of Down syndrome at birth, we knew the IEP process was a certain part of our future. But what if you’re not sure if your child is eligible for IEP services? You need a diagnosis first. Formal testing through your pediatrician and public school system help determine eligibility.

To determine eligibility, schools ask: Is there a disability? Does it impact access to the curriculum, access to the physical setting, or participation in the life of the school? If the answer to these questions is yes, special educators ask what instruction and supports are necessary to help students make effective progress. Greg Rosenthal, Director of Pupil Services for the Northbridge Public School system, says that educators rely on data to determine recommendations.

“Data. I preach data--and data from multiple windows,” he said. “Teams determine eligibility, but we gather data from formal testing, classroom teachers, families, and when they’re old enough, students themselves.”

According to Rosenthal, crafting an effective IEP means understanding the child first.

“Families are the most important aspect of the process,” he said. “IEPs are question-based and the first things we talk about are parent concerns and vision statement. Educators and parents both give ideas about accommodations and goals. At a certain age, I ask students to attend IEP meetings, too, so they can take ownership of their learning.”

Once an IEP is in place and implemented, special educators regularly collect data to measure effective progress. Rosenthal asserts 70 percent is still effective progress and that determining it “is an art. It can be subject to interpretations. Disagreements with families typically come to this part. There’s an appeals process because of this. We always go back to the data because effective progress is individualized to the student.” Families need to know they have a voice when disagreements do arise.

Building Trust-Based Relationships

Once you understand the basics of special education law and your child’s rights, cultivating a relationship of trust becomes the single most essential element of a successful IEP process. Trust is built on the mutual understanding that both you and your child’s team of educators have your child’s best interests in mind. Does that mean you will always all agree what your child needs to successfully learn? No, it doesn’t. Does that mean that your child’s IEP will always be followed as it should? No, not that either. What it does mean is that when you all stand on the same foundation—the positive growth of your child—you can navigate just about any conflict to reach a compromise.

“We [educators] are not infallible. We do make mistakes,” Rosenthal said. “But we always work in the best interests of the child. If things aren’t successful, we go back to the drawing board.”

At times, due to circumstances beyond everyone’s control, our school district has been unable to provide the specialized services Kaleb’s IEP specifies for an extended period of time. In one instance, the district physical therapy assistant had to step down near the beginning of the year and was not immediately replaced. Kaleb went three quarters of the academic year without physical therapy. We were frustrated, but choosing to avoid a blame game while still holding the school district accountable for the missed services preserved an essential relationship with our son’s team. Later, when the team proposed fewer units of occupational therapy over a summer than we felt Kaleb required, an honest conversation where we all heard one another out led to a mutual conclusion that Kaleb would benefit from more OT over the summer. When we disagree with each other, conflict doesn’t derive from contentious competition over limited resources (they are, of course, limited), but instead from a mutual desire to see Kaleb grow and learn under the best possible circumstances.

Even though the IEP process isn’t new to us anymore, we’re often still uncertain about what is best for Kaleb. There are things we wish we had known when we first started down this path. The first is that it’s okay not to have all the answers at the IEP meeting. Every year, there are always one or two details left unresolved because my husband and I aren’t sure what Kaleb should be entitled to or what the best course of action is. We’re okay with that. Our common response is, “Let’s just leave it for now, and we’ll check back in when we have more information.” Once we’ve had time to talk together or seek advice, we follow up with a phone call or email to confer again with the team chair. Keeping open lines of communication helps us maintain a healthy, long term relationship with Kaleb’s team.

The second thing we now understand is that the IEP process is about eligibility determination, not necessarily diagnosis. Mandy Irwin, Student Academic Services Director at Whitinsville Christian School, explained that “even if a child has genuine struggles that place him or her out of sync with peers, it may not result in IEP services due to the criteria used to make the determination. Even so, the process is often helpful, since evaluation includes recommendations that can be useful with or without a diagnosis.”

If your child is ineligible for services through your school system or receives fewer services than you think he or she needs, Rosenthal encourages families to seek outside resources to help address the challenges of a disability. “Sometimes families think the school is the only game in town, but not receiving services doesn’t mean there isn’t a disability. It just means the disability isn’t affecting the child’s ability to access curriculum, setting, and life of the school.” In those instances, your child’s pediatrician can be a helpful resource for identifying outpatient services like adjustment counseling or speech, occupational and physical therapies that are locally available.

Our family has chosen to take this route since Kaleb was 3. At school, Kaleb gets extra support navigating academic and social skills, but he’s also needed extra support in non-school areas, such as learning to pedal a bike and communicating his emotions at home. To meet these needs, we looked for an outpatient pediatric therapy program. Two days a week, Kaleb receives extra services, with different goals than the ones on his IEP.

When I sit in the waiting room of our outpatient therapy clinic and chat with other parents navigating the world of IEPs, we swap stories of success and frustration. We love good news the best: heart-warming relationships we see develop with our kids’ 1:1 aides, the way our kiddos are finally tying their shoes after a year-long effort in occupational therapy, the way they’re reading now because an intervention program finally made things “click.” There’s so much to celebrate even as we continue to navigate and advocate and negotiate. But we know this: at the center of each of these stories, at the center of the hefty legal document our school system redrafts each year, at the center of disagreements and successes is a child -- one who will grow up and learn and thrive despite our mistakes, but even more so when we work together in relationship toward shared vision and common goals.

Sara Korber-DeWeerd teaches creative writing, tutors, and coordinates the online learning program at the Whitinsville Christian School in Massachusetts. She is passionate about shifting the narrative of disability in our culture and empowering young people to do good in their world. She and her family enjoy raising awareness and funding for people with disabilities through local organizations, including the Massachusetts Down Syndrome Congress.