Miriam Grubbs is reaching out in a special way to parents of children with special needs, an umbrella term covering a staggering array of diagnoses.

The St. Matthews resident spends a large portion of her life as a busy wife and mother of four children, including 8-year-old Jack.

Jack has sensory integration dysfunction, a neurological disorder that causes difficulties with processing information from the five classic senses of sight, hearing, touch, smell and taste, along with the sense of movement.

Grubbs said her hearing-impaired child is gradually improving his language skills with the help of speech therapy. Rearing him has presented challenges financially and emotionally. His weekly schedule includes hours of speech therapy, intensive reading courses, occupational therapy, reading sessions and auditory verbal therapy in Columbia.

“After I got over myself, so to speak, with just the grief and sadness, I kind of decided that God gave me the kids he wanted me to have. My charge is to do the best for them. I think that making sure that Jack gets services that make him self-sufficient is my charge,” Grubbs said.

“As much as God gave me that responsibility, sometimes I wonder, ‘What was he thinking? I’m not that strong. I’m not that organized. I don’t have it in me today.’”

n ‘You can be an advocate’

Grubbs said she realizes these may be natural emotions for parents of children with special needs, including attention deficit hyperactivity disorder, epilepsy and cerebral palsy.

She has launched a support group to bring parents together. They support each other emotionally and work together to ensure their children’s needs are met.

“They’re children who need and deserve an education as future members of this society. Our goal is to create another generation of educated people,” Grubbs said.

Her son attends Orangeburg Preparatory School, where she says the student-teacher ratio is low enough to help satisfy her son’s special needs. Because Jack attends school in the Orangeburg Consolidated School District 5 service area, the district is the Local Education Agency designated to provide him with special services.

All children must be provided with an “appropriate public education” under the federal Individuals with Disabilities Education Act.

IDEA requires public school systems to develop Individualized Education Plans, or IEPs, for each child. Each student’s IEP must be developed by a team of knowledgeable people and reviewed annually. The team generally includes the child’s teacher, parents and an agency representative who is qualified to provide special education.

“What happened with us is that we had some issues getting the services on Jack’s IEP fulfilled. Those services were limited for Jack, or sometimes they were discontinued. We kind of had to renegotiate how to get those services. It was a very stressful process,” Grubbs said. She said the hearing, speech and occupational therapy services were initially hard to come by.

She said Jack is now accompanied by a hearing itinerant who helps him “understand concepts and directions to facilitate the teachers concerning a deaf child.”

“It’s really hard to get services in rural areas,” Grubbs said.

But she is grateful for the support her family has received from the “wonderful professionals that come out of District 5,” including Janeal Huddleston, a full-time occupational therapist the district has contracted to provide services for the hearing impaired and other special needs children in the district.

Grubbs said she formed the support group as a way to collaborate with the district and community agencies.

“This is not a covert activity and it’s not district bashing. No one has all the answers. I want this to be a collaborative,” she said.

“When you first start, an IEP process can be kind of frightening and overwhelming. As a parent, you want to be involved and know what your child is doing. You can then be better prepared to go in and know what services your child needs,” Grubbs said. “You can be an advocate for what your child needs and not depend on someone else to make those decisions for you.”

“You really have to be your own kid’s advocate because most of the time, people really don’t understand,” Orangeburg resident Felicia Reed-Goodwin said. She is the parent of 8-year-old Trevino, a student at Felton Laboratory School at South Carolina State University.

Her son has a learning disability, which is affecting his reading. Reed-Goodwin said she is particularly irked when teachers ask her if she ever reads to her son.

“It’s like they’re questioning my parenting, unlike realizing there really is a disorder. My son’s been tested and identified,” she said, noting that having a local support group is an important step in increasing community awareness.

Rearing a special needs child “is difficult. I’m afraid to let him go to other people’s houses because another parent might think he’s being disobedient, but he really just doesn’t understand,” Reed-Goodwin said.

“He’s very literal. If you go and tell him to go and sit in a car on a very hot day, he’s not going to ever get back out and go inside until you tell him to,” she said. “It’s very hard for me. A lot of times I have to think outside the box to try to figure out what he needs. I have to reteach something that is perceived to be common sense.

“I’m learning every day.”

n Parental involvement

OCSD5 spokesman Greg Carson said the district’s special needs programs are not affected as much by budget cuts as by the difficulty finding qualified candidates to place in hard-to-fill special needs positions.

“That’s a critical needs area across the country. We’ve been able to find some folks and fill positions, but every now and then you run into a couple that are kind of hard to fill. So, you’ve got to advertise and readvertise,” Carson said.

He said occupational therapists and speech and language teachers are among the hardest to find.

The district has approximately 1,205 students with disabilities in public schools, private schools and at day care institutions, Carson said.

The district’s special services program has approximately 72 full-time teachers, one part-time teacher, a part-time vision teacher and 90 paraprofessionals. The district also has one full-time physical therapist and one part-time occupational therapist.

“We have to keep beating the bushes. We’ve been able to find some folks. It may not be right at the beginning of the school year, but we fill those slots as we can find suitable candidates. We always make sure we take care of the children,” Carson said. “They may miss some services, but then we come back and give them those services as compensatory services.

“We make sure that they get them — that’s the bottom line.”

Even in the midst of state budget cuts, the district works hard to maintain academic services at their highest level, Carson said.

“Any services that we provide the children, especially from an academic standpoint, those programs and things like that aren’t cut. It’s tough to keep the class sizes down when you’re going through budget cuts like this. One thing we automatically see is class sizes increase, and we are experiencing that,” Carson said.

“It’s not terribly bad now, but it’s higher than we want it to be.”

Huddleston, who attended a support group meeting in November, said special needs children can excel beyond expectations with the proper training. She said literacy grants through organizations such as the American Speech-Language-Hearing Association and the National Science Foundation are among the grants that can be tapped to help meet the needs of special needs children.

“We continue to seek expectations that are not high enough for our children. Each child has unique gifts and unique potential. It’s got to be a team effort,” Huddleston said. Her own special needs son went on to become a researcher at the National Institutes of Health.

Barbara Johnson, a paraprofessional in Consolidated 5 who works with special needs students, also attended the November meeting of the support group. She said educating special needs students is a challenging endeavor.

“We’re pushed to our limit, and there is a limit. All of them are learning at a different level. That’s where the challenges come in,” Johnson said.

“All teachers have challenges,” Carson said. “We have to adjust their instruction to fit their learning styles. That’s why teachers have to be imaginative and creative. Teachers sometimes have to be magicians. Fortunately, we have a group of teachers who do that. We want to partner with the parents of our children.”

T&D Staff Writer Dionne Gleaton can be reached by e-mail at dgleaton@timesanddemocrat.com or by phone at 803-533-5534. Discuss this and other stories online at The TandD.com.

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