It’s Often Years Before the Learning Disabled Are Diagnosed

After enduring a “living hell” before getting her sixth-grade son into a school for learning disabled children, Kristi Wicker resists the urge to imagine “What if?”

What if Kyle had not languished for six years in a Long Beach public elementary school without proper instruction?

What if teachers and school psychologists had identified his dyslexia--and helped him compensate for it--before he slipped years behind his peers in reading ability?

“It’s best to put that behind me,” Wicker said. “It’s painful. He lost a lot. I can’t even imagine how different things would be.”

So it goes, parents say, with thousands of youngsters designated as learning disabled in California. As with Kyle Wicker, the difficulties often fester until they take an emotional as well as an academic toll.

The family suffers too. “I can’t tell you how many nights I went to bed sick and in tears,” Kristi Wicker said.

As years slip by, low self-esteem and reduced expectations compound the learning problems, often condemning a child to a lifetime of mediocre accomplishment and what one psychologist calls “learned helplessness.”

Consider Toby Swift, 12, a seventh-grader with a near-genius IQ whose reading nonetheless barely comes up to the level of a typical third-grader. Toby’s inability to read is so central to his personality that he once dictated an essay revealing his fear that literacy would make him a different person.

With his parents reading his homework to him and Ramona Middle School in La Verne allowing him to take tests orally, Toby made the honor roll last year. But his parents despair that he will ever be able to fend for himself, given the likelihood that he will never be able to read well enough to pass a driver’s test, let alone apply for a good job.

Meanwhile, the struggle to find the appropriate instruction for Toby has consumed his parents and embittered his father, Tim Swift.

“Our basic thing since Day 1 has been having Toby learn how to read, and he still can’t, and that’s why we’re frustrated,” Swift said.

Policies Unchanged for Decades

The sorts of frustrations experienced by the Swifts and the Wickers are typical of those that face the families of the more than 650,000 special education students in California.

Often the frustrations are deepened by policies that were adopted early in the history of special education and never changed, despite research suggesting that they were poorly thought out.

One of the biggest problems, education experts say, is that most students who are diagnosed as having a learning disability are not identified until third or fourth grade at the earliest--too late for them to ever catch up, educators say. This misguided “wait to fail” policy, they add, sets up children for a fall.

“We know fairly conclusively that if children have trouble reading by the end of first grade, it’s very demanding” to get them up to speed later, said David Chard, a researcher at the University of Texas in Austin.

Pupils who are simply struggling readers, researchers say, can benefit greatly from intensive phonics instruction as early as kindergarten. Given that, researchers assert, early identification and intervention with reading help could drastically reduce the rolls of learning disabled students.

Other children with more serious, neurological problems could also be kept out of special education, or at least have their educations managed more successfully, even if they continue to need some bolstering throughout their school careers.

Kristi Wicker’s fears surfaced early on. As a 4-year-old preschooler, Kyle could not identify letters. He finished kindergarten at Los Cerritos Elementary School in Long Beach knowing only five letters and no sounds.

Wicker, who runs a day-care center in her home, worked with Kyle, but, she said, “if we studied for 30 minutes, he had no retention 10 minutes later.”

Over the next few years, Wicker endured an often frustrating series of meetings with officials from the school and the Long Beach Unified School District. Teachers and psychologists routinely reassured her that Kyle was simply immature and anxious. She continued to insist that something was seriously amiss.

By fourth grade, spelling tests began, and Kyle could not spell any of 20 chosen words. He took to disappearing in the morning, pleading with his mother not to make him go to school, where, he said, his teachers didn’t understand him.

Feeling desperate, Wicker took her son to Claudia McCulloch, an educational psychologist in Torrance. Astonished at the depth of Kyle’s language processing problems, McCulloch advised Wicker to demand psychological testing for Kyle to determine whether he had identifiable learning problems.

Whenever a parent makes such a request, a school is obliged to follow through. And in December of fourth grade, a school psychologist determined that Kyle had a “specific learning disability” and was thus eligible for special services. In a follow-up conversation with Kristi Wicker, the psychologist ruled out dyslexia. The next month, the school and Kyle’s parents held their first Individualized Education Plan meeting.

Parents Cope With a Daunting Process

Often maligned by parents as an intimidating, bureaucratic process, the Individualized Education Plan is a step toward getting a child into special education after he or she has been identified as learning disabled.

It involves gathering a gaggle of teachers and psychologists along with the parents--no easy feat. Participants set goals and establish an instructional plan. The process can drag on, and parents complain that a child’s teacher often is not let in on the new strategy.

As often happens, the Wickers discovered Kyle’s case dragging on: dueling experts, disagreements over diagnosis, a threatened lawsuit. It was not until last summer, with Kyle due to enter sixth grade, that the district acquiesced to the Wickers’ demand that Kyle be placed at the Prentice School, a private Santa Ana school for dyslexic children. The district agreed to pay the annual tuition of $11,500 and to cover transportation costs.

As of early November, the district had not yet signed a contract with Prentice, nor had it worked out a transportation arrangement. The Wickers, meanwhile, are paying a friend about $600 per month to ferry their son to and from school.

Kyle’s mother said he is thriving at Prentice, which accepted him despite concern that his dyslexia was too severe for the school to handle. His class has 16 students (versus more than 30 in the public school) and a nearly full-time teacher’s assistant.

An outdoorsy, husky youngster who loves playing roller hockey, Kyle is described by his mother as shy and kind. Speaking comes hard to the 11-year-old, who struggles to find the right words and sprinkles sentences with “fillers” such as “stuff,” “things,” “uhs” and “ers.”

For the first time, she added, he willingly reads at home and can start his homework. He is more positive and confident.

“He laughs,” Wicker said with evident relief. “He’s just a different kid.”

The Long Beach Unified School District maintains that its interventions were helping Kyle.

“We offered a free and appropriate public education here,” said Kristin Powers, a school psychologist for the district.

The district’s goal, dictated by federal law, is to educate each child in the “least restrictive” environment. By definition, Powers noted, Prentice is more restrictive because it serves only dyslexic children.

It is tricky, Powers said, to attempt to prescribe an educational treatment for a specific learning disability. It is quite different from devising a treatment for strep throat or allergies.

“It’s a wonderful idea, but it doesn’t work that way,” she said. Current research, she added, supports trying a variety of interventions to see what works for an individual child.

Not Accepting Failure for Her Son

By contrast with Kyle Wicker, Toby Swift did receive special attention early. Whether the attention was helpful, however, remains an issue.

Instead of the kind of rigorous, repetitive practice with letters and sounds that researchers say works best for students like him, Toby was given dextroamphetamine, a stimulant, to improve his concentration. The Swifts, meanwhile, were urged to be patient and to work with him on memorizing word lists and flash cards.

Angela Swift, Toby’s mom, had a perspective that most other parents do not. She has been a special education teacher for more than 20 years, and had grown to accept the fact that few of her students were learning to read.

“I was taught to slow it down, do it again and be nice,” she said of the instructional methods she used.

When it came to her own son, however, she woke up to the fact that failure was not all right. She promised him--and herself--that she would help him learn to read. The medicine made Toby thin and depressed, so she discontinued it.

During the summer before Toby entered third grade, his mother began using a commercial phonics kit and then signed him up with a private clinic that charged $100 per week for two hours of intensive phonics.

As do many parents of learning disabled children, she hit the Internet, doing her own research. She has taken him to clinics to have his eyes examined, bought him special software to allow him to dictate assignments into a computer, and constantly juggled his class schedule to try to make sure he learns grade-level material.

When Toby was in the fourth grade, she began writing letters to the Bonita Unified School District to plead for help in teaching him to read.

“I am not willing to spend another year hunting and pecking for something that works,” she wrote in a 1996 letter to the school district, one of dozens to politicians, researchers and newspapers she has collected in a thick notebook. “Programs have already been developed, tested and widely used. It is time for Bonita Unified to train its teachers in effective methods and then insist that those be used.”

Some of the “multisensory” methods that Swift researched involve the use of computers to train the brain to recognize sounds more quickly. Others rely on tiles or rhyming games. But few public school teachers have been trained in these methods; moreover, they typically do not have time to work intensively one-on-one with students.

Eventually, Bonita began responding. This year, Toby and his classmates listen as reading teacher Mary Lou Casas pronounces nonsense syllables; they then arrange letter tiles to represent the sounds they hear.

The walls and bulletin boards in the room are covered with letters and letter combinations. A special computer shows in rapid-fire fashion words that have similar characteristics, such as the ending sound of “justice” and “balance.”

But although these sorts of programs are widely touted as helpful for students with reading problems, they may have come too late for Toby, who has become thoroughly discouraged by his years of schooling problems.

As other students vie to shout out the words, Toby continues to play with tiles and puts his head down on the desk. He makes only half-hearted attempts, grumbling that Casas “says them too fast.”

With high school only two years off, the Swifts are considering selling their house and moving to upstate New York, so that Toby can attend a private, college-preparatory high school for learning-disabled students.

“We already know what’s going to happen if he goes to a regular high school: He’ll get frustrated and wind up in continuation school,” Tim Swift said.

Angela Swift, despite all her efforts, still has regrets. She acknowledges that, given the severity of his disability, Toby might not be much further along even if the school district had properly addressed his needs earlier.

But, she said, “if he wasn’t further ahead, we’d at least know we’d done everything for him.”

Who to Contact for Information

Here are organizations to contact for information on learning disabilities. The Web sites also lead to dozens of other sources of information on special education.

Learning Disabilities Assn. of California

655 Lewelling Blvd.

San Leandro, CA 94579

(916) 725-7881

https://www.ldaca.org

Schwab Foundation for Learning

1650 S. Amphlett Blvd.

Suite 300

San Mateo, CA 94402

(800) 230-0988

https://www.schwablearning.org

Council For Exceptional Children

1920 Association Drive, Reston, VA 20191-1589

(703) 620-3660 or (888) CEC-SPED

https://www.cec.sped.org

California Department of Education

Special Education Division

515 L Street

Suite 270

Sacramento, CA 95814

(916) 445-4613

https://www.cde.ca.gov/spbranch/sed

National Institute of Mental Health

6001 Executive Blvd., Rm. 8184

Bethesda, MD 20892-9663

(301) 443-4513

https://www.nimh.nih.gov/publicat/learndis.htm

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About This Series

SUNDAY: Tens of thousands of California students who are not learning disabled wind up in special education classes, with lowered expectations and dim prospects, because they have not been taught how to read. Once there, they often don’t get the help they need. A1

TODAY: Parents of learning disabled children face multiple frustrations and fears that their sons and daughters will never become independent. Often, they become pitted against the schools meant to help them. A1

WEDNESDAY: Dr. Mel Levine, a nationally known pediatrician, is teaching educators and parents how to accommodate children’s learning differences. B2