Suppose one evening you sit down with your son Tommy to help him with his homework, and he runs away in tears. Now suppose this continues, and he becomes more agitated each time you engage him with reading; not even "Harry Potter" will tempt him to open a book. You realize something is seriously wrong – but what to do? For a starter, you meet with his teachers who tell you Tommy is "bright" (you smile at that), "articulate" (another smile), but he "won’t do his work" (frown), "he makes up excuses when I ask him to read" (another frown) or "he causes a disturbance when it’s his turn to read out loud" (deep sighs and head shaking now).
By this time, it seems obvious that your child has a serious problem, but what is it? His teachers tell you he can do the work if only hewould "work harder" or "watch less TV." Wrong. The probable answer is that a child with these chronic "reading avoidance" symptoms has a learning disability. He or she may be among the more than 10 million American children who suffer from undiagnosed dyslexia.
Defined literally as "reading blindness," dyslexia had baffled doctorswho could not understand why a bright child with "20/20" vision cannot read the printed word. Now we know: Dyslexia is among the leading causes of reading failure; conventional teaching methods and exhortations to "study more" are pointless. Unless they are taught by skilled professionals, dyslexic children may stop trying to read altogether, while sinking into depression and open rebellion.
"I knew there was something wrong with my brain," wrote Eileen Simpson, who grew up dyslexic. The late wife of John Berryman, the Pulitzer-winning poet who taught at Princeton, she wrote a memoir ("Reversals," Houghton Mifflin, 1979). "What had been a shadowy suspicion became certain knowledge the year I was nine and entered fourth grade. I seemed to be like other children, but I was not like them: I could not learn to read or spell."
When she looked at text books, Simpson saw meaningless shapes; she learned to hide from teachers and relatives with their demands that she read aloud. She was jeered for holding a book upside down. But "when testing children as to their power of reading," Simpson wrote, "it is not infrequently found that dyslexics perform no worse -sometimes even a little better – if the book is held upside down."
Yale neurologist Sally Shaywitz has spent her professional life studying why dyslexics can’t read. In "Overcoming Dyslexia" (Knopf, 2004), she writes: "Dyslexia has its roots in the very basic brain systems that allow man to understand and express language. It is a disruption in these fundamental neural circuits for coding language. As virulent as any virus that courses through the tissues and organs, dyslexia can infiltrate every aspect of a person’s life. It is often described as a hidden disability – but dyslexia is hidden only from those who do not have to live with it and suffer its effects."
So what is your public school district doing to educate a reading disabled child like Simpson? The likely answer is that your school district has no education plan aimed at dyslexia. It may even deny its existence, and will likely deposit that child in a "resource room" or "special ed" program where the problem goes from bad to worse.
According to Shaywitz, "public school programs for children with reading disabilities are failures. Special education programs tend to stabilize the degree of reading failure, rather than close the gap between a dyslexic student and his classmates."
All this was born out for this writer in his experience with a bright, articulate child – my son – who was regressing from "reading aversion" to "reading refusal." His dyslexia should have been obvious. Yet, even though he was failing badly in public school classes, the Princeton Regional School district denied an "out of district" placement for him at a private school that specializes in teaching dyslexics. As a result, we had no choice but to dispute this denial in a "due process" hearing held last fall.
At the hearing we presented the lengthy and detailed report that hadbeen prepared by one of the leading experts on identifying and treating dyslexia, Dr. Timothy King of Yardley, Pennsylvania. The report had been rejected by the same school with this cryptic comment: It is "inconsistent with present needs." Period. No explanation whatever was given.
Yet King’s report presented overwhelming evidence that my son sufferedfrom dyslexia.
The sad fact is that the school district – generally considered to be among the very best in the state – had a de facto policy of denial: Denial of the existence of dyslexia, denial that dyslexia is a specific reading disability, and denial of opportunities for dyslexic children to receive the education they deserve. By asserting that the award of "passing grades" to children who cannot read or write shows "meaningful educational progress," the district was promoting dyslexic children from one special ed class to the next.
By law, none of this should ever happen: Each year the school is required by federal and state mandates to develop an IndividualizedEducation Plan or "IEP" that provides "meaningful educationalprogress" for each child. Admittedly, this is a tall order for anydistrict to achieve, but if it cannot, it should be candid about its inabilities, rather than hide behind false grades and subjective declarations of "progress."
So how should the school district be helping dyslexic students?
First, end the denial. Educators must stop pretending that dyslexic children will "grow out of it" or can "tough it out" in mainstream classes, or learn to read and write independently in one-size fits-all special ed classes. These classes are often overwhelmed by children with diverse problems and abilities that do not mix well.
All of this I saw first hand when I attended one of my son’s classes. The teacher was trying to explain the difference between 20.0 and 2,000.00. Some kids struggled mightily with the concept of decimals; others rolled their eyes at the ceiling because it was so elementary; still others were bouncing off the walls. (When the principal learned of my presence, he made it clear I must not do that again. But how is a parent to know without seeing and hearing directly?)
Second, cooperate with parents of dyslexic children. Districts must stop forcing parents to initiate legal action to obtain the "in-district" help they need, as we had to do. If the district won’t, or can’t provide a "Free and Appropriate Public Education" (FAPE) for a dyslexic child – and few, if any, can – then it must promptly admit it and approve proper "out of district" placement of dyslexic children in special schools, which abound in this area.
In our case, the district spent more money in legal fees opposing my son’s placement in a private setting – where he is now being educated by trained teachers of dyslexic children – than it would have to send him there in the first place. Parents are the "canaries in the coal mine," but they are being treated like adversaries, and must respond in kind.
Third, stop pretending that grades are reliable indicators of "progress." As Shaywitz found and King reiterated in his report, subjective grades for special ed children are among the poorest indicators of reading achievement. Indeed, grades too often are manipulated to hide the child’s dismal reading level rather than to reveal it. Teachers don’t want to admit they can’t teach dyslexic Tommy or Susie. So they may offer up rosy scenarios of "doing better" or "making progress," even for children sinking farther behind their non-dyslexic peers each year, as revealed in objective achievement tests, such as the Iowa Test of Basic Skills (ITBS) or the Wechsler Individual Achievement Test (WIAT) for the child’s "decoding skills."
Finally, the Child Study Teams (CST), composed of teachers and learning consultants in each school, must devise honest Individualized Education Plans (IEPs). As required by law, IEPs must be designed to assure "meaningful educational progress" for each child, either in the local school or at an appropriate private placement at taxpayer expense.
But as parents of dyslexic children too often discover, the IEP process is a carefully staged fiction. In fact, the IEP process can and has been used to gain legal advantage over gullible and worried parents in a possible due process hearing that may follow. Here’s how:
1. The CST may try to persuade parents to accept whatever program the school has to offer, even if it demonstrably fails to meet the child’s needs. Typically this means yet another pointless year of boredom or rebellion in a special ed class that didn’t work the year before.
2. The IEP document seldom provides measurable goals or objective criteria of what the CST labels as "progress." Generalized claims of "progress" are worse than useless as benchmarks of success or failure, but it is the CST’s favorite word.
3. As noted above, standardized tests, which reveal if a child is sinking behind his or her grade level, are frequently ignored or given little weight. CSTs may even disparage them as "one day tests," while extolling subjective, special ed grades as more accurate.
4. Most frustrating of all, schools may even reject expert evaluativereports of your child, prepared by independent testers and at parental expense, should they demonstrate severe dyslexia and thus provide a basis for "out of district" placement.
So if your Tommy or Susie can’t or won’t read, maybe it’s because he/she can’t read, and maybe dyslexia or another neurological reading disorder is the cause. But don’t expect much help from your public school district. In fact, expect the district to treat you as a potential adversary; so plan on being an outspoken advocate for yourchild. Here’s how to do that:
Devise a strategy for confronting the school with all the evidence you can. Prepare for the annual IEP meeting as if you are going into court.
If need be, consult a lawyer or call an approved "parent advocate" to assist you. [Editors’ note: Potter is himself an attorney, and he has enlisted the help of another attorney for his case.)
Bring the lawyer or parent advocate with you to the IEP session, which you should tape-record as you ask the right questions – spelled out in advance to be sure you address them all – and put the school’s answers to your questions "on the record." If this sounds like preparation for battle, it is; helping your child may well depend on it.
As for public school districts, it is way past time for them to make a formal commitment to "overcoming dyslexia," in Shaywitz’s phrase, instead of continuing the dismal pattern of denial and disinformation about reading disorders and the failures of special ed.
All districts should start early, effective, and district-wide screening of children – starting NO LATER than third grade – to identify all those with dyslexia or similar disorders. Reading disabilities diagnosed after third grade are much harder to remediate, says Shaywitz, "because the brain is much more plastic in younger children and potentially more malleable for the rerouting of neural circuits."
Next, the districts must hire teachers trained in the specializedtechniques – such as Orton-Gillingham or Wilson – that are necessary to teach reading to disabled students of all ages. These techniques emphasize multisensory approaches which must be systematically repeated throughout the day in mainstream classrooms to be effective.
Finally, when will a school district in this region do the obvious? Start a "demonstration school" for dyslexia and other reading difficulties, which would save money and save young lives at the same time. Mercer County school districts have 54,533 children; if one-10th of them suffer from reading disabilities – half the percentage Shaywitz found – then more than 5,000 children may be dyslexic sufferers in Mercer County alone. This is more than enough children in need to justify numerous public schools devoted to remediating reading disorders.
To be sure, several private schools are doing splendid work now – such as the Bridge Academy, the Lewis School, and the Newgrange School – but the costs are high to taxpayers who foot the bill for "out of district" placements and to parents who go deep into debt to educate their sons and daughters because the district can’t. Perhaps one or more of these excellent private schools could be incorporated into public school districts as "magnet schools."
In the final analysis, ALL parents must demand real accountability. Teachers, counselors, school psychologists, and schools that fail to educate dyslexic children must not be rewarded any longer. It was public demand for "across the board" accountability that led to enactment of the "No Child Left Behind" law which – so far – has not been applied to special ed programs.
At the same time, superintendents and school boards must provide leadership, as some appear (belatedly) to be doing. For example, Princeton’s new superintendent, Judith Wilson, and the new head of "special services," Agnes Golding, have been outspoken in their commitment to "overcoming" dyslexia. But commitments require action. Time lost in a child’s life can never be regained. The future of more than 10 million dyslexic children is at stake – maybe yours and certainly mine among them.
The Schools Respond
The state of New Jersey does not code dyslexia, by itself, as a reason to put a child in special education classes. Some school districts, nevertheless, use curricula that are particularly effective with dyslexic students. U.S. 1 Newspaper contacted a half dozen area school districts to ask how many dyslexic children they had, and how these children are being taught.
What with vacations and preparation for the new school year, most of the districts did not return a reporter’s call. We did get responses from Princeton and Lawrence.
"We continue to look at our practices and clearly articulate our practices so that all staff can better understand the dyslexic child," says Agnes Golding, head of special services for Princeton Regional Schools.
Marie Luciano, supervisor for the child study teams for Lawrence Township schools, said that in her district, dyslexics are not trackedseparately from those with reading disabilities, but attention is paid to helping children develop skills to compensate for being dyslexic.
"Many of our reading programs already work with a multisensory approach, similar to the Orton-Gillingham and Wilson methods," says Luciano. "In special education, we are expanding our Wilson reading program." Certain teachers and learning consultants are already certified and others are going through the certification process. "Eventually we would like a couple of our learning consultants to get certified as trainers in the multisensory approach, and then we would be able to provide the training in house."