Parents' Corner
Bucking the System
This column is provided courtesy of The Mountain Times (http://www.mountaintimes.com), a newspaper serving the Boone, NC area. It chronicles the struggles and triumphs of a local family as they make every effort to see that their daughter has the communication system that will give her the most positive life experience. As always, feel free to e-mail parents@aacinstitute.org with any comments or questions.
Robin
Bucking the System
Area couple fights
for child’s education
By Scott Nicholson
The following is part four of a seven-part series.
Jessie Jackson uses a touch-screen
device to vocalize sentences.
Photo by Scott Nicholson
Jessie Jackson is not your typical high school student, but her parents’ hopes and dreams are just as real as the parents of many other students. They’ve just had to work a little harder to make them come true.
Jessie was in the third grade when she first began exhibiting signs of developmental problems, including loss of balance and motor skills. Because the symptoms were so subtle, Jessie wasn’t tested early on for academic problems. She continued to decline during her grade-school years, transferring from Green Valley to the county’s exceptional children’s program at Hardin Park Elementary School. Her parents, David and Merlie Jackson, said they were told Jessie wasn’t a candidate for testing to receive an augmentative communication device, or ACD.
Unsatisfied, the couple sought evaluation through the Charlotte Institute of Rehabilitation and Jessie received an ACD, which acts like a computer touch screen that vocalizes words and allows people with limited vocal abilities to communicate. David and Merlie then struggled to get the school system to teach Jessie to use the device, saying it wasn’t until they sought help from a state advocacy group that the school system began training someone to work with Jessie and her ACD, since her model was different from the ones already in use in Watauga County.
“Many people are intimidated and don’t know what their rights are,” David said. “It’s the school’s responsibility to adjust to that student. Parents have to educate themselves and do their footwork and stand up for their child. If you don’t, they’ll let that child slide by.”
To empower themselves, the couple began calling various agencies around the state, attending seminars on exceptional children’s programs and reading a book series called Wright’s Law that addresses the rights of exceptional children, particularly in the school system. David describes them as “books the school system doesn’t want you to have.”
“You have to fight for everything you can get for your child, because if you ask for anything besides what’s sitting right in front of them, you’re bucking the system,” David said. “Every child is entitled to fair, free and appropriate education under the law. Cost should never be brought up.”
Now a tenth grader, Jessie has undergone a numerous medical tests but has never received a definitive diagnosis. She can communicate in one-word utterances, but the addition of the ACD has expanded her range of expression and offered hope that she can get a full education. Though she still reads at a prekindergarten level, she made strides last year with a solo instructor at Watauga High School, along with other resources her parents found.
“There are a lot of resources, but you’ve just got to blaze your own trail,” David said. “Even people in those agencies sometimes don’t know what their own department does.”
Merlie said parents must accept the responsibility to advocate for their child because parents have the most at stake. “For teachers, she’ll be the child they used to teach,” Merlie said. “But it’s always going to be your son, daughter, mother, brother. It’s always going to be your family member.”
“You know as much about that your child needs as much as any professional does,” David said. When asked about perceived gaps in the system, David responded, “You mean there’s something besides gaps? There’s no beginning. Nobody knows where to start.”
It was while attending a Raleigh conference on special needs that the couple learned about David Koppenhaver, an Appalachian State University professor who teaches those who will work with exceptional students. The couple made an arrangement so that Jessie now receives tutoring twice a week from those students, under Koppenhaver’s supervision.
Merlie said advocating for a developmentally disabled child is a struggle, and she closed her own business selling children’s clothes to concentrate on Jessie’s advancement. “Every part is a battle, so you pick and choose your battles,” she said. “But there’s a light at the end of the tunnel. You’ll find someone who will spend the extra five minutes to point you in the right direction or help you.”
David said it’s difficult to figure out how, where and when to begin advocating for a child, but said the “No Child Left Behind” legislation strengthens the rights of special-needs students. Despite frustration with the county school system, the couple has learned from regional conferences that they are not alone. “It’s not just one or two people who are having problems, or just in this county,” he said. “It’s nationwide.”
David said with Watauga High School and ASU working together, Jessie’s reading skills and verbal communication have improved. “The sky’s the limit,” David said. “We want her to go as far as she can go. You don’t set a ceiling.”
Though Merlie feels the school system didn’t do an adequate job of evaluating Jessie, she also accepts responsibility because she was “guilty of stepping back and not being involved enough.”
As Jessie enters her sophomore year, Merlie is excited about the future. “Now my daughter can use her touch screen and say, ‘I love you,’” Merlie said. “Tell me that’s not worth fighting for and worth everything we’ve been through.”
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