Learning how to advocate is a game-changer for parents, children … and even schools

by Fran Sugarman

Natalie Wieters has a nine-year-old son, Jesse, who attends the Kearny School in lower North Philadelphia. Jesse is on the autism spectrum and has multiple disabilities.

Wieters has been advocating for her son since he was two and has been trained in special education advocacy. But understanding her son’s issues and obtaining the needed services for him is an ongoing challenge, with always more to learn.

Jesse has difficulties communicating and has low muscle tone, Wieters said. He has been in a regular ed classroom and only gets pulled out for academic support.

“Jesse has a wonderful disposition and is likeable,” Wieters said.

Through four years of effort, Wieters has been able to get more services for Jesse, but after his most recent evaluation, she thought that something was missing and realized that Jesse’s past evaluations felt piecemeal. She explained that his autism involves an interaction of speech and body movement problems.

An active member of the Right To Education Task Force, Wieters is participating in The Arc of Philadelphia’s Special Education Advocacy Training (SEAT) program. After a session on evaluations, Wieters understands why her son’s report is incomplete and what to ask for. “Jesse needs an independent evaluation. In the past, we have been told only what he cannot do. We need to know his strengths, and how he can learn,” she said.

The SEAT sessions help Wieters and other parents understand how inclusion needs to be tailored for each individual child. “Some children in inclusion classrooms are not getting the academic support that they need,” she said.

The 13-session program aims to provide a comprehensive understanding of how to navigate the special education system. “The program is unique because it provides a cross training between professionals and parents,” said Donna Bouclier, director of The Arc.

“The process of being an effective advocate for your child requires continual and extensive learning,” she added.

Graduates of the SEAT program are eligible for board certification as an Advocate through the National Special Education Advocacy Institute.

Sharmaine Jackson is another parent who has been attending the SEAT program. She has two children with disabilities; her son, 13, who attends Rhoads School in West Philadelphia, has acute ADHD, sometimes making it hard to control himself.

At Jackson’s first meeting to discuss her son’s Individual Education Plan or IEP, she was told that certain things would be done. But these items were never put in writing. Frustrated, Jackson said, “I frequently see the same stuff from the old IEP put into the new IEP.”

A SEAT session helped Jackson get to a point where she knew to ask the team for a reevaluation that described in detail what her son is doing rather than just declaring that he is not behaving.

Parents like Jackson and Wieters are not just interested in advocacy for their own children, and the SEAT program tries to widen its impact by including a “train the trainers” component.

Wieters said that she would like to share information with professional staff and other parents at Kearny.

Jackson would like to see a network of trained parents in every school, and says advocacy training is “a necessity.”

“Parents of kids with disabilities have a lot on our plate. We have to learn how to take care of our children,” she said.