How to Navigate the Special Education System

Special Needs Education

Once a preschool or school-aged child has been identified as eligible for special education services, parents often face a dizzying array of paperwork, meetings and decisions that can seem overwhelming, particularly if they’re still digesting the news that their child has special needs.

“When my child was in preschool and the preschool was identifying areas of concern, as a parent, that was really hard to hear,” says Stacey Kohn of Raleigh, a mother of three who now works as a consultant helping other parents going through this process. Kohn remembers that she felt isolated and embarrassed, but eventually turned this energy into advocating for her child.

As Kohn learned then and now shares with her clients, knowing how the system works can go a long way toward easing parents’ fears and frustrations and helping them contribute to the most appropriate plan for their child’s needs.

Where things start

It may be that, as with Kohn, the school recommends testing based on teacher observations. However, just as parents of infants and toddlers can initiate an evaluation when something seems amiss, parents of school-aged kids who have concerns about their progress can request testing as well.

Kathleen Seifert, a Cary mother with two children who have special needs, recalls her decision to seek testing from the school system. “I kept not seeing improvements and being told [by the school] that these were developmental issues,” she says. Her pediatrician, however, encouraged her to trust her instincts, and she requested a psycho-educational evaluation from her school district. The results confirmed a special needs diagnosis for her son that qualified him for services.

“Once a child is screened and does not pass … [the schools] will perform a full evaluation,” Chapel Hill Pre-K/Head Start teacher Jeannie Watrous explains. “The results of that evaluation will determine what services they qualify for.”

Testing and follow-up is done according to established protocol to ensure that every child has access to the services he needs. The evaluation becomes the foundation for an Individualized Education Program (IEP), a document that creates an educational plan for the child.

Choosing the right setting

The Individuals with Disabilities Education Act (IDEA) requires communities to provide a free, appropriate public education (FAPE) for every child. Parents of students identified as needing special eduction services have a number of options, including private schools, special needs classrooms at public schools and mainstream classrooms at public schools. The best option is determined by the child’s parents and a committee of educators.

Mara Deutsch of Durham faced these choices in finding a preschool for her daughter Ally, now 6, who is hearing impaired. Deutsch and her husband chose the Center for Acquisition of Spoken Language through Listening Enrichment (CASTLE) in Durham and also enrolled Ally in a typical preschool to help her learn to interact with hearing peers.

“We chose CASTLE because they are the experts in helping deaf children learn to listen and talk,” Deutsch says. “When choosing Ally’s typical preschool, we wanted to find a director and teachers who would be excited to work with Ally and would provide a welcoming, respectful environment for children with different needs.”

Chapel Hill mom Kelly Steffens also worked to find the most appropriate kindergarten placement for her 7-year-old daughter, who was diagnosed with cerebral palsy and autism as a toddler.
“She is in an autism classroom but mainstreams into the kindergarten classroom for about 50 percent of her day,” Steffens says. “The experience with the school has been mostly positive. There is always a give-and-take when it comes to advocating for your child in a public school, but her team (mainstream teacher, autism teacher, aides, occupational therapist and speech therapist) adores her, and they are wonderful at their jobs,” she adds.

Watrous advises parents to look for the least restrictive environment (LRE) for their child. For some children, a self-contained classroom is best because it allows them to have a teacher with more specialized training. For other children, social and other goals are better addressed in a classroom with typical peers.

“They should not be placed in a self-contained classroom just because they have special needs — especially if they can benefit from being placed in a classroom with typical peers,” she says.

Be part of your child’s team

Even after identifying the right environment, parents still have a responsibility to ensure that the prescribed accommodations, therapies and other interventions are implemented. “You are still the most passionate person about your child and his needs, so you are the one who will make sure his needs are met,” says Kohn, the parent consultant.

“It is important to build relationships with your service providers because ‘the system’ can be so confusing without their support,” Deutsch adds. “I suggest writing everything down, keeping good records and asking any questions you may have.”

Educator Watrous advises parents not to feel overwhelmed. “It can be a very confusing process for children to be evaluated and referred for services, and there is a lot of paperwork that goes along with it,” she says. “[But] it is true for both typically developing children and children with special needs that they are more successful when the parents are involved in their education.”

Laura Winter of Raleigh, a former teacher and mother of a 7-year-old daughter with autism, agrees. “I wish that someone had told me to trust my own instincts as a parent,” she says. “I think so many parents fail to realize that they are the most important member of the IEP team and that parents can call a meeting or request services. It doesn’t always have to originate at the school.”

Getting extra support

After years of advocating for her own children, Kohn found that she had developed a network of professionals and learned the language of special needs that many parents find so frustrating. “I kept hearing from schools, ‘I wish other parents would do what you do,’” she says.

Now as a consultant to parents, Kohn strives to help them work effectively with the school team. “I feel like a translator sometimes,” she says, “making sure the parents hear what the school is saying and the school hears what the parents are saying.”

Winter also encourages parents to seek help from others with experience. “When we got the diagnosis of autism, we were given no resources at all. … I used a parent of a former student [with autism] and a coworker with extensive training in working with people with autism as resources,” she says. By reaching out to her network, she felt armed with more information and more support.

“I would suggest to anyone going through this process to contact their spiritual leaders, neighbors, family members and members of their community support network,” she adds. “Another option I would highly recommend is the use of a parent advocate.” Parents of children with autism, for example, can contact advocates through the Autism Society or the Wake County Special Education PTA.

Remember the reason

While navigating the educational system can be a challenge for parents of kids with special needs, administrators, therapists, educators and friends can help make the process less difficult. It also helps, these parents say, to remember that all of that effort goes to serve a very special purpose.

“It is so useful to have the support of other parents who ‘get it,’ but it is equally important not to make the world of special needs be your only world,” Deutsch says. “Our daughter is a unique, amazing little girl who happens to have some differing needs.”

Steffens also sees the positive aspects. “There is so much hope for our kids with disabilities. Our family focuses on the positive instead of getting caught with ‘What if?’ or ‘Why me?’ because those are dangerous traps,” she says. “We see Marley as an unexpected blessing who came into our lives and taught us all how to be better people and to graciously appreciate everything we are given.”

 

 

Visit these websites to help your family understand and navigate the special education system:
National Dissemination Center for Children with Disabilities: www.nichcy.org
The Public Schools of North Carolina Exceptional Children Division: www.ncpublicschools.org/ec
The Family Support Network of North Carolina: www.fsnnc.org
Treatment and Education of Autistic and related Communication-handicapped Children (TEACCH):
www.teacch.com

Robin Whitsell is a mother of four living in Chapel Hill. She is inspired by the children with special needs, their parents and the teachers in her middle daughter’s integrated pre-K/Head Start classroom.

Categories: Exceptional Child