Asking the right questions: IRSD parents learn together in special-ed group

Date Published: 
September 2, 2016

This year, hundreds of Indian River School District parents will begin navigating a new pathway they didn’t expect: special education services for their kids.

It’s a tricky road to follow. Families try advocate for their children, sometimes not even fully understanding the educational process and their rights.

That’s why school districts statewide are forming parent groups, such as the IRSD Special Education Parent Council.

Monthly meetings began in January. It’s not a decision-making body of the district, just a place for parents to network and learn from guest speakers and each other.

“This is great, right here,” said parent leader Megan Browne, watching families chat after the Aug. 23 meeting. “You feel so isolated sometimes, so it’s just nice to chat with people who have the same life.”

Of the 10,000-plus students in Indian River School District, around 14 percent are considered “special education” because they have an IEP or 504 Plan.

In 2015, a new Delaware law instructed every school district to create such a parents group, “with the ultimate goal that the district would step out of the picture, and the parents would have a forum to work together,” said Regena Izzo, IRSD special education implementation specialist.

After providing some training in the first few meetings, Izzo now sits in a room nearby, letting parents run their own meetings, but close enough to answer questions if need be.

“We’re thrilled to have them in place,” Izzo said. “It’s a big deal to have parents who can support each other and help educate each other … and be partners with us as we work for their children.”

At meetings, the parents ask district staff without children to identify themselves beforehand, so people are comfortable speaking openly, without the perception of “gotcha” moments.

The Aug. 23 meeting drew a smaller summertime crowd, as two dozen parents and children played “IEP Lingo Bingo” in the Millsboro Middle School auditorium. They won prizes while learning the many acronyms found in the special education world, like “mild intellectual disability” (MID), “speech language pathologist” (SLP) and “positive behavior support” (PBS).

Meetings are run by an executive committee of four or five parents. They will invite guest speakers, such as therapists, other parents, state officials, district staff and more. One meeting focused simply on understanding an IEP and related terminology.

“We’re learning, too,” Browne said. “We’re not the experts. We want to bring the experts to you.”

A translator helped the Spanish-speaking families to keep up with discussion.

Get the information flowing

When a child has a disability that merits special instruction, he or she gets an individualized education program (IEP). Parents and schools create each IEP to officially map a child’s goals — plus the school’s plan to get there — including special services, supports or accommodations.

Meanwhile, a 504 Plan is for a child whose disability warrants some accommodations but not special instruction, Browne said. For example, a very fidgety child might be given an inflatable ball chair to help dispel some of his energy.

“We really hope to empower parents so they can make better choices and ask better questions for their kids,” Browne said. “The more you know, the more you can ask for.”

She’s creating an information portfolio and planning to create a webpage to share presentations and family resources.

The goal is to keep discussion more general and positive. But if parents come with specific issues or concerns, they can find Regena Izzo in the hallway, ready to provide further guidance.

The group is currently developing a mission statement and goals.

They aren’t affiliated with the IRSD’s Special Education Task Force, which formed in April as an official review of district special-ed services. However, district officials hope to get input from the Parent Council, as well as other focus groups.

Who’s coming to these meetings?

Parents came from all walks of life, some with children well into high school and others parents of students just starting pre-kindergarten. They can all learn from each other’s experience.

When his son was first diagnosed at age 3, Morley Daehn just thought, “OK — now what do we do?”

More than a decade later, Daehn just calls his high-school-age son a “quirky kid” who worked around his learning challenges to focus on his strengths as a computer whiz.

“I just wanted to help other people get through the system,” Daehn said of his decision to join the Parent Council. “I really want this to take off. I’d love to talk to every single [district] parent,” and help them understand the “road map” of special education.

In August, some families didn’t even have a full diagnosis yet, just the knowledge that something wasn’t quite clicking for their child.

Rimmer said the Parent Council is welcoming to families who don’t have an IEP or 504 Plan quite yet.

“If your child is struggling, if you’re consistently seeing the same problems come home, seeing the same grades come home, but you don’t know what to do — this is the group that’s going to give you one-on-one attention to help you understand what you can even ask for, what terms to use, how to start a process and, more than likely, help your child get services you may not even realize they qualify for.”

Even a career in clinical social work hadn’t fully prepared Rimmer to answer the question “What services do you want for your child?” Moving forward, the Parent Council could help her answer that question.

A good place to be

Delaware has great special education resources, agreed parents who have moved here from nearby states. The trick is navigating the system.

“It never felt like a partnership. It was very adversarial,” Browne said of her previous home. Now in Delaware, “They care and they want to help you.”

Having moved to Delaware in 2015, Laura Rimmer joked that she used to attend parent conferences with a briefcase of documents (and lawyer on speed-dial) to continue proving her son needed special services.

But Delaware offers much better services, said Rimmer, adding that she is particularly happy with the IRSD.

She proudly describes how, at Lord Baltimore Elementary School, her son wasn’t treated like a problem child, but as a student absolutely overwhelmed because of a sensory processing disorder. By the year’s end, and with the proper accommodations, the formerly “self-defeated” first-grader was reading far above his grade level.

“There’s a tremendous difference between empathy and excuse,” said Rimmer, who won’t let her son’s condition be an excuse for his not accomplishing things.

“We want them to be functioning, self-sufficient adults. We want them to reach the fullest potential they can, within whatever their capacities are,” Rimmer said. “That doesn’t mean turning a blind eye or not challenging them. It’s just understanding that there’s going to be hiccups.”

Getting involved

Meetings are held on the fourth Tuesday of each month, from 6 to 8 p.m. Meetings may be at different locations, so the district sends automated phone calls to notify all families of upcoming meetings.

A website is coming soon, to share parent resources more publicly.

For more information, or suggest a guest speaker, email the executive committee at IRSD.parentcouncil@gmail.com.å“There is no fear in the label,” Rimmer wants parents to know. “You will meet and network and bond with other parents and see we come from all walks of life, we speak all different languages, and yet we’re all trying to do the best for our kids.”