Claire knows that parenting a child with dyslexia can be emotionally taxing. Add to this, a move to a special school and family interplay and her story becomes even more animated. Claire's daughter, Helena 13, is a 7th-grader at a school for dyslexia in Connecticut.

It's a huge goal shift. I used to think, "maybe my child can grow up to be president." Now, shifting gears, I say, "maybe my child can just graduate from high school." It's a huge adjustment. It's also sad that I'm adjusting my goals for a child at such a young age.

Helena told us in first grade that she was having trouble. Like many things, though, with children, we didn't really listen. It's unfortunate. But it's the truth. It was usually bedtime when she'd say, "I couldn't do some of my schoolwork today; it was difficult." I'd respond, "well of course you can, you're very smart, you know that." I let it ride. She was only 71/2 then. It didn't seem serious. After comments like that, night after night, however, I decided to approach her teacher.

"Absolutely no. Helena's very bright." assured her first-grade teacher. "There are kids in this classroom that don't get it, and she's definitely not one of them." She said all kids progress at different stages, and Helena was no different. By year's end, though, she confessed. "Helena has fooled me, there is something not right." We alerted her second-grade teacher, who set up remedial reading sessions three times a week with the resource teacher. Again, by year's end, her teacher commented: "There's something going on. I can't tell you what it is. But there's something just not right."

Going into third grade, we requested testing by the school psychologist. The battery of tests indicated that Helena was 21/2 years behind grade level in reading and writing, but scored in the mid 120s in the IQ section. At that point, we really went with the flow. Pulling her out of her neighborhood school in suburbia New York, in our eyes, was a sense of failure. Helena soldiered on in third and fourth grades, with some improvement.

Everything came to a halt, though, the first week of fifth grade. Helena is a savvy girl. She sensed something was out of sync. She understood the demands of fifth grade, but she couldn't do it. She understood what was expected, and wasn't going to try. Helena has a bristly personality. I refer to her as my alpha female. But her behavior, the amount of work and the demands in the classroom were altering this spunky kid. She was sinking. My husband, Paul, and I didn't like what was happening.

I was unsettled about the whole thing. I asked the teacher for a conference but she was reluctant. Her response was that they'd only been in school a week and it was too early to tell. Paul and I had planned to move Helena into a new school at the end of fifth grade because it provided a natural break from elementary to middle school. Now, we were 12 months ahead of schedule and options were closing in; fifth grade already was in session.

I looked at several schools for dyslexia in our area. I knew I had to fix the problem. There was some admission on my part that my daughter was damaged - no longer the perfect child. I felt lost and emotionally tangled. I was working full-time in New York City. Deep down in my stomach, I wasn't sure I would see the same kids as in our local school, in suburbia New York. But when I visited, faculty and administration were caring and accepting. I still had mixed emotions, though. In truth, I felt vulnerable.

Paul's main concern was to not limit her future options. He was concerned about her being labeled and about her not following a rigorous academic track. He was not formally diagnosed with dyslexia but had all the telltale signs. Way back in elementary school, his parents and school wrote it off to poor eyesight. Paul worked extra long hours and became a successful architect. He was fortunate to excel in math - geometry and spatial design - and graduated from Cornell and Princeton.

Our extended family was largely supportive. No one was trying to tell us don't do it. My mom knew of kids at the special school. Maybe with my in-laws, there was a bit of disappointment. They are very academically oriented. Paul's parents are immigrants from Poland, and firmly believe education is critical. To take their granddaughter off the normal track was troubling for them, even though they understood she was not living up to her potential. They probably didn't say everything to me, and I'm sure my husband didn't pass it all along. Realistically, there was more said than I ever heard. On the other hand, I just had to galvanize myself and do the best thing for Helena. It didn't matter what the rest of the world thought.

I still think inside the family, there is a twinge about Helena's dyslexia. I recall once being asked "you're sending your kid to a special summer-school program Harvard, for gifted kids?" "No" I responded, "She's going to the one at the special school for dyslexia". It took, honestly, about a year until I could speak about it like anything else, with no reservation inside. If people didn't know of the special school, I didn't volunteer the information.

The move, in reality, was the hardest on Helena. She did not want to leave her friends, good friends. I don't think these were necessarily the best relationships, but she was getting their attention by acting out, not in the classroom, but outside school. She told her friends, interestingly, that "my parents are making me go, but I'm going to get kicked out and I'll be back in three weeks". She was convinced that she could do this. Her friends were very accepting of this. One of the girls in the group had an older sister who has developmental and physical disabilities, so it was no big deal that Helena was going to a special school. While everyone understood "your parents are making you do this, no problem," we ended up being the bad people.

Helena never got over her conviction that she hadn't done what she set out to do - to get kicked out and go back. She really cut off those friends, even though they tried to maintain a relationship with her. She was too embarrassed. I thought over time she might heal, but that didn't happen. We sat with her many hours, reassuring her that her friends didn't expect her to come back, and telling her that sometimes this happens. I told her "nobody is holding you to it." But, it was difficult for her to agree. That for me was the true negative of the move. By her own choice, she didn't continue friendships in town.

At the moment, I feel like it is a "work in progress." Her school advisor says she has two of the three survival skills - innate intelligence and social wherewithal. Academic excellence needs working on. A big component, too, is Helena buying into the program, and it's an emotional one. In public school, they give you the tools to succeed; here it's different. Her progress is erratic. That's been the biggest struggle. If she applies herself academically, options will open up for high school. I'm hoping this is a temporary shift.

The way I would best describe our daughter - someone with a strong personality and dyslexia - is that she sucks all the oxygen out in the room. She wants attention, she wants it to focus on her and, if it doesn't, she finds a way of getting it back (she'll make it in this world!). As a parent, there's a lot of energy sapped from me, in the best of times. Now, there's just that little bit more.

Sibling interview:              JESSIE RIVING, 3rd-grader

Jessie, 9, attends public school. Her brother, Charles, 11, is a 5th-grader at the same school in Dallas, TX. Day by day, Jessie says, school is becoming more difficult for her brother. It's affecting his self-esteem. It's changing things at home.

I hear Charles crying to mom. Lately, it's practically every single day. He needs to talk to her more now because he's having hard times with his schoolwork and he gets into trouble a lot. Some boys tease him, too, even his best friend, Drew. Drew circles his hand at him to say he's stupid. It makes my brother feel sad. Charles is not stupid; he's really smart.

When we play chess together, he thinks up really good moves. And we have a fort down the street. Charles came up with the idea of having a ramp. He planned it out and made it. And it works.

When I hear Charles talking with mom, I stay up in my room and try not to listen to what they're saying. Sometimes, when I'm standing by her and listening to her shouting at Charles, she tells me to go up to my room. That makes me mad. I don't like her shouting and crying. I say, "Mom, snap out of it." She starts laughing and, sometimes, she cries. This happens once a week, mostly after school.

Mom often asks if I'm feeling sad because she's with my brother a lot. Sometimes, I do. She promises to find time with me and she does. The other day, we stuffed a toy animal for our church. This morning, she took time to make a skirt for my white bunny. Next week, she's trying to work on some pants.

Homework takes me about 20 minutes. But, for Charles, it takes like two or three hours. Sometimes, I try to help him on his math. I know multiplication, addition, subtraction and division. But he gets a little bossy. I try to help him, but it's really not working out.

Sometimes, when we're not doing homework, I like to follow my brother around the neighborhood. I like to be his buddy. Sometimes, we're happy and then, other times, we're mean to each other. But, he's my brother.

College Student:   ALICIA VARGAS, senior, Brown University

Alicia, 22, is focusing on American Studies. Alicia, who is Latino, grew up in the inner city of Hartford, CT. She was diagnosed with dyslexia during her sophomore year at Brown. It was a difficult time for her. She no longer was the Wonder Woman she'd been in high school. She uses any accommodations she can get.

I got labeled before I even reached adolescence. I was Latino. The people around me in school said I was going to "mess up." They had it all scripted. I was going to drop out of high school, meet some guy and get pregnant. Some of my relatives believed this, too, and so did some of my teachers. I wanted to prove them wrong. Not only was I going to college, I was going to an Ivy-League college. Funny, at that time ­ I was only 10 ­ I didn't even know what that meant. All I knew was that I was going to become one of the best.

I graduated as the valedictorian from my junior-high school. But, when I got to high school, the faculty told me I couldn't get into honors classes. I became enraged. I knew legally I had the right to be in those classes. With my parents' help, we managed to persuade the principal. My personal WAR had begun. I was Latino, but I was college bound. I already was looking into college scholarships in the 9th grade. This was the only way for me. No matter what I had to achieve, I'd do it. I took the most challenging courses, played soccer, ran track, joined clubs and was a member of the National Honor Society. I would stay up until 3 or 4 a.m. every night reading, note taking and writing papers. No one but my parents knew how hard I worked. I did everything I had to do to get into a good college.

At first, I thought everyone had to work that hard to get "A's." I didn't know I had dyslexia. And, sorry to say, no one in my school ever noticed it either. It wasn't until I won a Connecticut Youth math and science scholarship and attended summer classes at a private school, that someone realized. The teachers and dorm advisors noticed that I would study all the time and never socialize. They were the first to recommend I be tested. But, my high school had no facilities and it was too expensive for my parents to pay for testing. I didn't get tested. Instead, I learned to work twice and four times as hard as everyone else. I just figured that was the only way to be successful. And, it worked. With determination, good grades and my parents' emotional support, I got into Brown.

Then, I reached the second semester of my sophomore year. I started to get anxiety attacks and even an ulcer. I took on too much. My limits were tested. I became human. I became destructible. I failed a class. Not because I didn't have the ability to pass it or to understand the material. It was because I ran out of time. I couldn't re-read the material. I decided to talk to the Dean of Students and he suggested I get tested. When I found out what I'd suspected was true all along, my world came crashing down. I had run myself into an unhealthy state. I was staying up until all hours of the night, studying, re-reading notes and drinking lots of coffee. I couldn't sleep, and I had horrible nightmares.

After the diagnosis, I wanted to run and hide from myself. Why wasn't I normal? I felt dumb. Why couldn't I be like everyone else? I hated being me. I felt like I could never accomplish or go beyond what I'd already done. This had never happened to me before. It was at this low point when I was awarded a Carnegie Mellon Fellowship. It jolted me, made me see the light. Throughout my self-evaluation, I told myself I had proven I could make it at Brown. It didn't matter if I was special; I had what it took to succeed. This seemed to free me.

I used the summer between my sophomore and junior years to figure out how I was going to work with this learning difference. It took all of my junior year and several deans to help me do it. Multiple-choice tests still are my nightmare. So, I've avoided taking classes with that type of testing. Writing long papers is terrifying, too. Every time I write a term paper, I usually revise it six times. I have a writing tutor and I try to take as many English classes as possible. It all helps.

Organization is one of my strong points. I carefully allot time for my social activities. I work out daily and I spend time at meetings and with friends. I set up a schedule to do my assignments ahead of time and only use additional time to hand in papers if I'm really pushed. I take the regular amount of classes and I'm concentrating on graduating with honors. If you look in the dictionary under organization, you'll find my name.

I now know how to work with my dyslexia. That makes a big difference. So, I'm not concerned about coping with the workload at grad school. I know it will be harder than at Brown, but I can do it. I am concerned, though, about taking the GRE and LSAT tests. I know I can take them with extended time, but it's still scary. I'll most likely try to get a History or law degree. After I graduate, I'm going to get a research fellowship. Then I'll probably apply to grad school the following year.

Alicia suggests:

Concentrate on what you've already achieved, not on what you haven't. It will give you the strength to go on.

The worst trap you can fall into is questioning yourself, questioning your intelligence, questioning your self-worth. Dyslexia isn't going to stop you from doing what you want to do. The only thing that can stop you is who you are deep inside ­ your fear of trying, your fear of fighting, your fear of succeeding.

Find an organizational pattern that works for you. But never model yours after someone else.

And, above all, carry a pen and paper with you at all times.

next page

home page