“There isn’t a child on earth who doesn’t want to learn to read”
—Mother and Advocate, Bonnie Patten
No mother wants her baby to have dyslexia. No mother hopes their child’s future will be filled with struggles because they are born with a brain resistant to reading. For twenty percent of American children born with dyslexia, that often means years and years of blindly navigating a dark educational maze of mostly ignorant walls, a floor with consuming cracks, and the occasional random door of understanding.
But some lucky kids don’t have to go it alone. They have mothers who opt to hang on, shine a light and help them map the maze to learning. These mothers find a way to rethink their schedules, displace professional dreams and personal time, dive into debt, and become educational champions for their children with dyslexia.
This is the story of three such mothers who turned themselves into effective advocates. All three have involved husbands, excellent educations of their own, and high-pressure jobs. All three mothers encountered delays, denial and stunning ignorance when it came to diagnosing their children with dyslexia. Each was surprised, looking back, at how ill equipped mainstream educators (public or private) were at recognizing or accommodating dyslexia— despite good intentions all around.
"I couldn’t have imagined how exhausting it would be. It’s like a second full-time job. An enormous amount of time would go into talking to educators…. But I would go to the ends of the earth for my child. It’s just what you do as a mother."
Sheree Carter-Galvan has steered her son Sebastian through four different private schools since the sixth grade. Although she is a very busy senior associate general counsel for Yale University, Sheree finds that the battles on behalf of her son’s classroom needs often crawled onto her desk, demanding her attention.
“People don’t understand the toll,” explains Sheree. “I couldn’t have imagined how exhausting it would be. When Sebastian was younger, it was like I had a second full-time job. An enormous amount of time would go into talking to educators.... But I would go to the ends of the earth for my child. It’s just what you do as a mother.”
Bonnie Patten can second that sentiment. Her crash course in advocacy began when she was a high-powered healthcare litigation attorney and daughter Tait was a little girl in Montessori. “It’s an incredible amount of work…. It is stressful because it’s my kid, so I’d get emotional. And then there is the time demand. At times, it took all my down time.”
Bonnie suspected what was affecting her daughter. Bonnie herself had been diagnosed with dyslexia in college. Ashamed, Bonnie ripped up the test results and flushed them down the toilet. But here her daughter was, showing signs of dyslexia. Bonnie was told Tait was “too young to diagnose” at age five because she was so bright. Bonnie got Tait a tutor anyway.
The private tutors would checkerboard Tait’s elementary years in her Connecticut public school. Tait hid books, then memorized them to fake reading (but she was unable to flip the pages in sync). She was also copying off other kid’s papers. Bonnie became increasingly certain her daughter had dyslexia. Tait’s teachers were uniformly unreceptive to the “D” word, equating dyslexia with “dumb,” a sentiment echoed by the school system.
Tait’s school system refused to affirm her diagnosis of dyslexia until fourth grade. Bonnie basically had to construct what her daughter needed, making it up as she went along. All the way to middle school Bonnie played “mother guesses best.” What she now advises other mothers to do in the early years is persist until you prevail.
“When the teachers all thought I was crazy… sometimes I thought maybe I am crazy and overly sensitive,” she recalls. “Don’t give up. You’re not crazy.... You are going to make mistakes, you are going to have your bad months or years. As far as coulda shoulda woulda—I am mostly so exhausted I forget about them.”
In Atlanta, Lynn Waymer was finding herself in a similar situation. Everyone around Lynn’s daughter, Wrisa, knew there was “something” going on at the same early age as Tait. Lynn was a busy HBO executive also trying to solve the puzzle that was her daughter. Like many parents of children with dyslexia, it would take Lynn years to have diagnosed what a highly trained professional could have identified in days. Lynn heard all the usual stalls: “Wrisa is too young to diagnose,” “her sister does her talking for her,” “Wrisa’s too smart to have dyslexia,” and even “watch out for learning disabilities” with no explanation of what learning disabilities were.
On the advice of a psychologist, the Waymers moved clear across Atlanta to put Wrisa in a progressive school that also had no clue about dyslexia. The chorus of educators tried to convince Lynn that little Wrisa had something very rare.
Wrisa had a great time at the progressive school, and was laughing up a storm in the learning room, but she’d also figured out how to scam the smartest kid in the class with candy for reading and math answers, because she was making no progress on either subject. Finally, a cousin at a Christmas dinner piped up about her own dyslexia, followed by a friend who saw an Oprah show on dyslexia. Lynn put up another 2,600 dollars for a second private evaluation.
“I could only take so much more inside,” Lynn explains. “It was totally overwhelming. I was a major media executive who was fifty percent travel.... I did have days when it felt like my hair was on fire…The testing psychologist recommended the $25,000-a-year Schenk School that specializes in children with dyslexia. We finally hit the jackpot. It worked like a charm.”
As their children progressed in school, the three mothers negotiated different systems. Lynn was the most fortunate. Atlanta is rich in very effective private specialized-education schools. Once Wrisa started at the Schenk School, Lynn concentrated on building Wrisa’s self-esteem. She enrolled her in the Atlanta Ballet, struggled to pay for all of it, and slept in the parking lot while her daughter danced.
“Bother with the small stuff—send the school psychologist flowers, always send thank you emails, sponsor teachers for dyslexia seminars…." — Bonnie Patten
“The best thing I ever did was to invest in my child’s education. The school, the extracurricular activities, the ballet—I invested in all of it…. On the advice of the psychologist, I stayed a mother not a teacher.”
Individual Education Plan: a legal document drawn up with the school district for a learning disabled student that sets out the student’s abilities, goals, and any extra help or accommodations required by those disabilities under the law.
Bonnie Patten didn’t have a school like Schenk. Having figured out for herself that daughter Tait had dyslexia in the second grade, Bonnie booked time with the principal in the public school for what she thought would be an informal chitchat about recent testing. Instead the principal coldly called for a formal Individual Education Plan (IEP - see box on right) meeting. Bonnie thought even then that meeting would be casual—after all it was just a chat with Tait’s principal, and they got along well.
“Boy, was I wrong,” Bonnie remembers. “The principal’s biggest fear was that I was coming in to make the school spend more money. The staff was intimidated by the principal. They said they didn’t think Tait had dyslexia and they weren’t going to do anything about it. I was totally shut down. It was my own fault. I wasn’t ready. After that I would come in more overprepared than any parent you have ever seen.”
Bonnie learned to show up for Tait’s IEP meetings with copies of testing and any other pertinent documents for everyone attending. She brought the testing psychologist with her. The best she ever got out of Tait’s elementary school was some extended time and sessions with learning and math specialists. The real problem was the school didn’t have what Tait needed. Bonnie did her best with the private tutors.
By middle school, Bonnie had sharpened her skills. She started each school year with a two-page profile of Tait for each teacher. Then, because no one actually read it, she asked for a meeting with the whole team within the first two weeks of school.
By crafting Tait’s profile carefully, Bonnie dispelled ignorant assumptions up front. She included Tait’s high IQ, and highlighted the fact that, yes, Tait could read—just not as easily as others—and established contact with her teachers, liberally distributing her email address and phone. She found most educators concerned and kind, but clueless. Her next step was constant upkeep. Her philosophy remains the same: honey beats vinegar every time, and keep the sour puckers away from your kid.
“Bother with the small stuff—send the school psychologist flowers, always send thank you emails, sponsor teachers for dyslexia seminars…. Of course, I have had times when I was infuriated. But I kept my anger in check. I vent a lot to my friends, but never in front of my children. They need to respect their teachers and trust them and believe in them—and not think they are idiots.”
Sheree and Sebastian seem to have had the toughest time so far. The four schools Sebastian attended since sixth grade have been a mix of public and private, but it wasn't until high school that Sheree identified a school for Sebastian that had a broad commitment to supporting students within its general population who were dyslexic. Prior to that, each school year was a delicate feel through the maze. Like Bonnie, Sheree was very involved with Sebastian’s teachers, monitored his classes, and was always a familiar face at school. But that guaranteed nothing. “I’ve learned you can’t predict when things will go wrong,” says Sheree. “So you can go the whole year and then pull one string and find out everything is falling apart. We have been so sobered by the experience of raising a dyslexic child…. It only takes one teacher to create a disaster. One uninformed teacher can make the whole thing miserable.”
Sheree found it most painful when Sebastian believed he has advocated for himself with a teacher, only to get back a paper with a lousy grade all marked up as though her son had no issue with writing. Sheree refused to tolerate an educator ignorant about dyslexia stepping on Sebastian's psyche. "I did not want to send him to a school that would kill his spirit. I didn't want anyone to kill my child's love of learning. I didn't want anyone to kill off my child's ambitions and dreams." Yet, she had to learn, and sometimes the hard way, that it it is best to subscribe to the "honey over vinegar" philosophy.
"The hardest part is to see your child through the downs," observes Sheree. "We’re lucky—a lot of the teachers would come around and Sebastian grew as a student. But we also learned that you can’t force teachers to do things they don’t want to. It is virtually impossible to change a veteran teacher. Sometimes it is advisable to avoid confrontation and work through the advisor.”
"My family knows now I can really solve a problem. My uncle called me a warrior mommy. My daughter knows how much it cost and that I’ve got her back whatever the problem.” — Lynn Waymer
All three women will be sending their children off to college soon. In addition to being kids with dyslexia, Tait, Sebastian and Wrisa are also kids with great talents and passions—two are ski racers, one is a modern dancer, more than one is also artistic—and all have self-confidence. While none of the mother advocates is congratulating herself just yet, each knows they have put in years for something precious. Just as important as fighting for their kids’ futures, these mothers showed them what determination, deep love and commitment from a parent can do.
As Lynn Waymer puts it, “Wrisa would have fallen through the cracks. I don’t think she would have learned to read. My family knows now I can really solve a problem. My uncle called me a warrior mommy. My daughter knows how much it cost and that I’ve got her back whatever the problem.”