Twenty years ago, as Betsy Ramsey's firstborn child lay cradled in her arms at Portland's Kaiser Hospital, she wondered about the world of possibilities within that warm little bundle. What she could never have imagined was that her bright-eyed baby boy would lead her to become a major Oregon voice for kids with learning disabilities.
At first, all seemed well in the family's solid, inner-city home. Ramsey, a half-time cancer researcher at the Oregon Health Sciences University, and her engineer husband Don Ruff, had no reason to suspect a problem with their smart, funny, active son Jon, who relished the storybooks his parents read to him daily. But the couple started to worry when, despite an all-day, enriched preschool program, four-year-old Jon's prereading skills were nil. A teacher's reassurances quelled their concerns as he entered kindergarten. But by the end of his first-grade year in a dual-language Spanish immersion program, the little boy still couldn't decipher the symbols and sounds of the printed word. When reading continued to elude him well into second grade, the school placed him in a resource room for one hour, twice a week, for help overcoming what they termed a "specific learning disability."
It wasn't until Ramsey and Ruff had the child evaluated by a specialist with Portland's Language Skills Therapy tutoring program that they got a precise diagnosis: Jon had "dyslexia," a barely familiar term to them in those days. (See Letting Kids' Gifts Shine Through for more on the Language Skills Therapy program.) The disability was moderately severe, the specialist said. So for the next four years, Jon's parents paid for thrice-a-week private tutoring to supplement the help he got at school.
In the meantime, Ramsey had started to educate herself on the complexities and vagaries of special education—the research, the terminology, the law—and the current strategies for teaching kids with learning disabilities. As part of that process, she dove headlong into an activist role. Serving on the school district's parent advisory council in special education for more than a decade, she also chaired the local site councils at Ainsworth Elementary and Lincoln High School and did a stint on the citizens' budget review committee. Her growing expertise put her in demand outside the district, as well, where she has served on such statewide bodies as the Oregon 21st Century Schools Council, the Oregon Reading Consortium and, currently, the Oregon Reading First Leadership Team, which is advising the Oregon Department of Education on allocation of federal funds under the No Child Left Behind Act. The governor appointed her to the Oregon Advisory Council to Special Education, which she chaired last year. And she's now serving a two-year term as president of the Oregon Branch of the International Dyslexia Association.
As for her child, the little boy who couldn't read is now majoring in international studies and Spanish at the University of Oregon. Nearly fluent in Spanish, Jon Ruff is spending his junior year in Cuernavaca, Mexico, fulfilling his degree requirement for study abroad.
Sitting in the family's 1910 Craftsman-style bungalow, recalling the road she has traveled with her son, Ramsey recently shared her travails and hard-won insights with Northwest Education.
NORTHWEST EDUCATION: How did you feel in those early days when Jon was struggling in school?
BETSY RAMSEY: You feel kind of desperate when your kid's really hurting. You feel panicked because you know he only gets to go through school—through childhood—one time, and it's all messed up. You don't want it to be all messed up for him. You want to fix it. When your child is born with a learning disability, it's a hidden disability. You think you have this perfect child—he has all 10 fingers and toes and sparkling eyes. He's walking at the right age and talking at the right age. You have all these dreams and aspirations for him. And then all of a sudden it hits you, and you have to face the reality that what you thought you had, you don't have. You just have to change your thinking. You have to accept this person for who he is and then set about to make him as successful as his potential will allow. In our case, as in many cases, that potential is far greater than you can imagine when you see all the hurdles ahead.
NW: Was the twice-weekly pullout with a resource teacher an adequate intervention on the school's part?
RAMSEY: No. Jon needed specific instruction in reading, writing, spelling, and math. And he needed it every day. But we didn't know enough about the special education laws at the time to argue with the school that he should have more than he was getting. People at the school were really nice and well-meaning, but they didn't know that much about working with LD kids—and I think we had some of the better-trained teachers out there. One of the big problems in the field of learning disabilities is that teachers are very poorly prepared in the current system to deal with it, especially in the general classroom. They have very, very little background in how to teach kids who learn differently. Sometimes, these kids learn so differently and think so differently from the way the teacher thinks that she can't even imagine how they learn. Teachers need to take an inquiry approach to problem solving around that kid—trying different things, measuring progress, and then trying something else if that doesn't work.
NW: Is it realistic to expect teachers to address all these learning styles?
RAMSEY: It's a very, very difficult job. Teachers have many, many kids with many, many needs in their classrooms. But it goes to the whole idea of multiple intelligences—we all have strengths and weaknesses. Dyslexics happen to have weaknesses in reading—one particular task that's hard for them to do—which happens to be a crucial skill in our culture. Because reading is something that is so integral to success in our society today, people who can't do it have great difficulties in life. If we lived in a hunter-gatherer culture, it wouldn't matter. In fact, people like Jon might have certain kinds of advantages in their thinking that would actually make them highly successful in a nonreading culture. I've often used the example of music: What if music—carrying a tune—was the skill you had to have to be successful in life? Musical ability is just another set of neurological skills that some people come by naturally. How many of us would succeed if that were the standard?
NW: You mentioned the neurological roots of dyslexia. Brain research has recently shed a lot of light on this disability, which until recently has been poorly understood.
RAMSEY: Yes. For many years—and still, for many people—it was considered a moral failing of the individual: They're not trying, they could do better if they only worked harder. Yet in fact, they're working harder than anybody else because of the wiring in their brain. (For more on current brain research, see the interview with University of Washington researcher Virginia Berninger.)
NW: In addition to hiring a tutor, were there other things you pursued on Jon's behalf?
RAMSEY: Right after we hired the tutor, Don happened to meet a dyslexia expert who told him about a support group at Lewis & Clark College for LD kids and their families. It's called Reversals. We started going as a family and learned all about IDEA and all the things you need to do to be a good parent of an LD child. That's where we gained the expectation that Jon could succeed and go to college, because it didn't really look like that was possible at the time. Meanwhile, I kept reading to him every night through middle school. We also started him on a regular program of listening to books on tape from the Oregon State Library for the Blind. I would check out the print version of the book at the county library, and Jon would read along with the tape. It really improved his vocabulary, syntax, and fluency. We had a Spanish-speaking friend who read his Spanish-immersion textbooks aloud to him, and other people taped textbooks for him. A lot of people helped out.
NW: What about the nonacademic arena?
RAMSEY: Parents need to find out what their kid is good at—to make sure he's successful at something. For my kid, it was music. He played the string bass. But his high school didn't have an orchestra program, so I started an orchestra as a before-school club. We had 20 kids. I hired a director and raised money through the booster club to pay her. I did all the attendance and organizing. Jon went on to play in the Portland Youth Philharmonic for five years.
NW: So Jon was pretty lucky. He got a lot of specialized help and support starting in second grade. Many LD kids, however, don't get identified until much later.
RAMSEY: Most dyslexic kids aren't identified til third, fourth, fifth grade. That's too late. The research shows that if you're not reading by third grade, you're going to have a lot of trouble. And the longer you wait, the more emotional problems you have to deal with. There are basically two kinds of kids—those whose behavior brings them to attention and those who fake their way through. The kids who act out tend to get identified earlier. But a lot of other kids, especially girls, will fool the teacher. They'll memorize passages ahead of time, for instance, and then when it's their turn to read aloud, they'll pretend to be reading. Jon tells a story about being in SSR (silent sustained reading). He'd sit there with his book, pretending to read, looking around at the other kids and wondering, "How do they do it?" I feel so bad for these kids!
NW: Can you talk about the emotional damage that happens to kids who struggle along without appropriate intervention?
RAMSEY: If you've got a kid who's acting out, he needs a thorough evaluation to see if the problem is really an underlying disability. You really have to look deep to see what's troubling him. If you don't deal with the disability, you'll never properly address the emotional issues. The problem with the current system—and this is beginning to change—is that there's this "wait to fail" policy. My son had to fail to learn to read before he could get help. Over and over again, we ask these kids to fail, and when we see that they've failed, we'll try something else. What will serve us better is when we can identify these kids when they're four or five years old and start working with them then—and then, all the way through school, accommodate their learning differences. They'll never develop these emotional problems because they will be successful from the start. If they have early intervention, many of them will actually be able to go on and do standard work. This approach is being talking about in Congress with the reauthorization of IDEA, and there's also a lot of this thinking in the Reading First program enacted as part of the federal No Child Left Behind Act. It's much easier to turn things around when kids are little than to wait til they fail.
NW: How can schools identify learning disabilities in very young children?
RAMSEY: There are two tests—a phonemic awareness test and a letter-naming test—you can give to five-year-olds that will predict pretty closely how they're going to be reading at third grade. Each test takes about five minutes. Some districts in Oregon are screening all kindergartners. You will over-identify a few kids, but it's really worth it to find those kids who have those weaknesses before they start learning to read. Then you can give intervention as they're learning to read. The Bethel School District in Eugene has applied this principle, and 95 percent of their kids are reading at a third-grade level by third grade. They're working on the other 5 percent right now. (See the article on Bethel's approach, Double Dose.)
NW: You and your husband were able to afford to pay for tutors and other help for Jon. But what about families without resources?
RAMSEY: I'm involved right now with a group that's doing tutoring
at Humboldt Elementary, Jefferson High School, and a couple of other schools in low-income neighborhoods. It's an outreach project of the Oregon Branch of the International Dyslexia Association called One-on-One Works. We got an $8,000 grant from the Collins Foundation to pay highly trained tutors to work with those kids. But it's sort of a drop in the puddle. 
My buddy Trevor yells at me from the kitchen. "Jon, read me the label of the bottle you're holding."
I, in a not-quite-confident voice, begin to read out loud, stumbling over every other word. "Man-ufa-ctu-red in Colombia with co-mpon-ents from....
Trevor laughs. "Jon, still can't read."
I laugh back. "Nope, still can't read."
This occurrence at age 20 with two-thirds of my college degree done is funny, because of course I can read. I got a 3.5 GPA last semester and am fluent in Spanish. But when I was in elementary school and truly could not read, something like that was not so funny. School at that time in my life was not interesting and challenging, like I find it now, but rather something that made me cry. I remember sitting through SSR (silent sustained reading) for 30 minutes, bored out of my mind because all I could do was look at the words; I had no concept of what they meant. I also remember the embarrassment of getting called out of class to go to the resource room for "special" help. The kids were jealous that I got to get out of class until they found out where I went and what I did. Then they just laughed. It wasn't laughter like me and my buddy Trevor share when we discover my little oddities, but a hurtful laugh because it was at me.
But kids are cruel, right? Dealing with my learning disability was hard for me when I was younger, not because I was doing horrible in school and still couldn't read but because I was different from the rest. It's funny now looking back on it because I could have turned out to be a cry-y eyed, depressed young man. But I didn't. If you were to ask any of my friends or professors now, I don't think they would describe me like that at all.
I wish I could put my finger on the one thing the helped me appreciate myself and allowed me to be successful, but I can't. It was a combination of many factors. Of course, I'd have to give most of the credit to my parents, who never gave up on me and supported me through thick and thin. To this day, they still give me as much support as they can. But it was also the help of teachers, counselors, and friends that ultimately got me through.
—By Jonathan Ruff
University of Oregon
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