Learning Detours

From the time her son Luke was diagnosed with a mild form of cerebral palsy, Leslie Lundgren knew he would face more than his share of challenges in school. But early on, it seemed he would be able to use his sharp mind to overcome his physical disability.

“In kindergarten he was pretty on-task except for some fine-motor problems, and we expected that,” says Lundgren, who lives in Maple Grove with her husband, Rick, and Luke’s three younger siblings. “He knew his alphabet and could count when he was two-and-a-half. As inexperienced parents, we thought he was fine.”

But as Luke moved into first grade, his reading and math skills lagged behind those of his classmates, despite his clear intelligence. Tutors helped some, but Luke was still scraping by where he should have been excelling. When he was in the fourth grade, a referral by St. Paul-based Gillette Specialty Clinic led to a full neuropsychological evaluation at Fraser Child and Family Center in Minneapolis.

Those tests revealed that Luke had a nonverbal learning disability and also attention deficit disorder. When the Lundgrens heard the Fraser staff run down the symptoms of his nonverbal learning disability—excellent memory skills but trouble with reading and math, a great vocabulary hampered by sub-par abstract reasoning skills—one bell after another began to ring in their heads. “Over and over again,” recalls Lundgren, “we said, ‘Yep, that’s him.’”

Unanswered Questions
Learning disabilities have existed since humans first showed the capacity to learn, but it’s only relatively recently that their many layers and variations have been uncovered. Many of us are old enough to remember when kids with learning disabilities were simply classified as “slow.”

The latest figures from the Minnesota Department of Education estimate that between 3 and 3.5 percent of school-age children in Minnesota have a learning disability. Often, these disabilities are categorized by what they prevent children from doing: Dyscalculia inhibits the understanding of math concepts and symbols, and dysgraphia hampers the ability to form letters in writing. The most widely known learning disability—dyslexia—inhibits accurate and fluent word recognition, spelling, and decoding abilities. But in general, a learning disability is marked by a below-average ability to take in, store, organize, or express information—abilities most school-age kids can take for granted.

For the most part, the causes remain mysterious. Researchers have speculated that injuries before birth or in early childhood could lead to learning disabilities, that babies born prematurely are more prone, and that learning disabilities tend to run in families. Some research shows that boys are more likely to have learning disabilities. And it was once thought that because of the many structural eccentricities of the  language, learning disabilities were more common in English-speaking countries—new evidence suggests that’s not the case. With such a sketchy road map, much of the effort among doctors and educators has gone toward diagnosis and treatment.

Early Signs
As the Lundgrens discovered with Luke, spotting a learning disability can be tricky even for the most attentive parents—especially when a child’s learning problems seem to be symptomatic of a separate condition.

The red flags are many and varied—difficulty labeling sizes, shapes, and colors; reversals in reading and writing; slowness in completing work; poor short-term or long-term memory; difficulty with tasks requiring sequencing; and a reluctance or frustration with doing schoolwork. Muddying the waters further is the fact that many accepted symptoms of learning disabilities—such as poor organizational skills and impulsive behavior—are widely seen as a normal part of childhood.

But experts say there are some signs that should be watched more closely. “The most crucial early signs are a delay in language acquisition, knowing colors, recognizing letters, knowing how to rhyme, knowing seasons—that kind of thing,” says John Alexander, head of school at Groves Academy, a St. Louis Park–based school that specializes in learning disabilities. “At four or five years old, if there are difficulties in those areas, there’s a good chance of a learning disability.”

Bonnie Carlson-Green, a pediatric neuropsychologist for Children’s Hospitals and Clinics of Minnesota, says behavior that seems benign might actually be masking a learning disorder.

“If a child has a language learning disability, it may show itself as a tendency to miss sequence sounds,” she says. “They might say ‘ephelant’ instead of elephant, or ‘pasghetti’ instead of spaghetti. That might indicate difficulty articulating or difficulty organizing language elements.”

Learning difficulties can also show up as a diminished ability to stay focused. “Early on you might see that they have trouble staying with one toy,” says Carlson-Green. “There might be a trail of unfinished tasks. Or they might seem impulsive—they might start into the street even though they’ve been told numerous times to wait for you to cross with them.”

Since so many learning disabilities are manifested in difficulty with processing and conveying data, one way kids struggle is when they have the answer, but just aren’t able to “spit it out” in a fast-paced classroom setting.

“The teacher may ask a question of the child, and even if the student knows the answer, the teacher will move on to another child because it’s taking too long for him to answer,” says Virginia Richardson, manager of parent training  at PACER Center, a statewide information center for parents of children with disabilities.

While the list of symptoms are  lengthy, the most powerful tool in getting a child the early help he or she needs might be plain old parental instinct. “Parents know when something isn’t right,” says Carlson-Green. “A lot of parents tell me a pediatrician or a teacher told them to wait to have an evaluation done, but they knew better. Nine times out of ten, parents have a good instinct.”

Critical Time
Usually around third grade, as the saying goes, students stop learning to read and start reading to learn. This is when a previously undetected learning disability can make itself conspicuous and also when a diagnosed one can become more cumbersome than ever, leading to a nightmare scenario for both the child and parents.

“Third grade was the worst,” says Leslie Lundgren. “Luke would get so stressed [in the classroom] that he pulled out a three-inch patch of hair.”

Taking action at that age is crucial. According to the National Institute of Health, children who have been diagnosed with a learning disability and are receiving proper intervention by third grade have a better chance of maintaining grade-level reading skills throughout their school career, which translates to success in every other subject.

“At that point, students are expected not just to read, but to produce written language in their science classes, social studies, and so on,” Alexander says. “So they really can hit a brick wall.”

It’s at this age that intervention becomes most focused as standardized skills tests and other metrics that can determine a student’s future become more commonplace. It’s also at this age that kids who fall between learning-disabled and special ed–eligible need the most acute attention.

“We [professionals who assess children for learning disabilities] try to fit the middle of the road for those kids,” says Carlson-Green. “We should provide parents with ideas for things they can do at home, resources such as tutors and software programs, and sometimes psychopharmacological intervention. A lot of teachers are more than happy to meet children halfway because it’s a stage where you have to be a little more creative and flexible.”

Assessment and Intervention
A learning disability can easily hide itself behind the sometimes boisterous, sometimes distracted behavior that’s common to virtually every child. That can make diagnosis tricky.

The first step for parents who suspect their child might have a learning disability is assessing just what kind of help he or she needs, a process usually initiated by the parents along with a teacher or other educator. A variety of methods are used to gather assessment information, including observations of the child, family interviews, checklists and rating scales, and informal and standardized tests.

These assessments will determine whether a child is eligible for special education services. In fact, the Individuals with Disabilities Education Act (IDEA) requires that children have an assessment before receiving special education. And each public school student who receives special education and related services must have an Individualized Education Plan (IEP). The IEP, written by school personnel, the student’s doctor, and his or her parents or guardians, helps tailor the student’s educational program. (An alternative to an IEP is a 504 plan, a legal document that outlines a plan of instructional services for students in the general education setting, describing the types of accommodations that will be made for a student in school.)

As helpful as these steps are, there are still lots of children with learning disabilities who don’t qualify for special education services. “Special education is a failure-based model,” says PACER’s Richardson. “You don’t get it unless you’ve fallen a certain degree behind.”

Richardson says that a more proactive approach to providing early intervention to students, including those with learning disabilities, is being adopted in response to overhauled IDEA legislation. IDEA 2004 encourages states to adopt Response to Intervention (RTI) models that encourage local educators to focus more on early screening, continual monitoring, and  highly focused instruction. Though RTI hasn’t yet been made part of state-mandated educational models, Minnesota school districts have the option of adopting RTI as part of their learning disability identification process.

Network of Resources
For students who show a documented need, the state’s public schools have numerous programs and services to address learning disabilities, including special education programs; assistive technology; audiology, psychological, and speech-language services; occupational and physical therapy; and the help of social workers.

“Any child with an IEP is entitled to services, but the help they get depends on the nature of the disability, the severity of it, their age, and other factors,” says Lori Boynton, capacity building manager for the Learning Disabilities Association of Minnesota.

In elementary school, those services are determined by a team that generally consists of the child’s parents, classroom teacher, the school’s special education teachers, and someone from the school administration, but can also include therapists used by the family and other concerned parties.

“The law’s very clear that these kids have to be found [by public schools],” says Boynton. “Once there’s a diagnosis and an IEP, it’s driven by an individual child’s needs and how the team will meet those needs. It’s not about what the parent or the school wants, it’s about what the student needs.”

When students turn fourteen, Boynton says, they must begin formulating a transition plan with the help of parents, educators, and others involved in their case. According to federal and state law, that plan must address five areas of the student’s life after high school: community participation, post-secondary or vocational training, independent living, recreation and leisure, and competitive employment.

Meanwhile, a handful of private facilities in the Twin Cities provide supplemental learning and other services for students with learning disabilities, including Edina-based Huntington Learning Center, Sofia Kafes in Burnsville, and Club Z! in Apple Valley. PACER’s website also has links to many valuable resources.

Groves Academy, in its thirty-sixth year, is the area’s best-known school for students with learning disabilities. Luke Lundgren is now a happy, successful seventh-grader at Groves, which has an enrollment of 175 students who have moved from traditional school settings. Despite the expense of sending a student to a school such as Groves (where annual tuition is $17,350), about 30 percent of Groves students receive scholarships.

“Luke has been there since fifth grade, and they absolutely saved his life,” says Leslie Lundgren. “They make sure he’s mastered what they’ve taught him before he moves on, and that’s so important.”

Luke has plans for college, as well as some creative pursuits. “He wants to build a music production studio,” his mom says. “And he has no doubt that he can do it.”