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Family works through dyslexia challenges

November 12, 2018

HOLDEN, Mass. (AP) — There were always signs that something was different about Emma Bullock, her mother said.

On one occasion, while they were watching an American Girl movie where the dyslexic main character sees letters moving around on the page, Rachel Bullock recalled, “Emma turned to me and said, ‘Mom, that’s what it’s like when I try to read.’”

But hunches and gut feelings didn’t count for much in the more rigid world of public education, Ms. Bullock found over six long, frustrating years of watching her daughter flounder and then almost lose hope because of her condition. It was only this fall, at age 11, that Emma finally found a school that could provide the necessary amount of specialized instruction dyslexic kids like her need to learn to read, she said.

A new law passed last month in the state may provide an easier path for dyslexic children in the near future, she and other advocates hope. That measure, the product of years of lobbying from dyslexia awareness groups and families with dyslexic members, will require all public schools to screen children for dyslexia.

“It’s a step in the right direction,” Ms. Bullock said, but definitely not the final victory for parents like her who say they’ve found the topic of dyslexia to be almost taboo in public schools. “It doesn’t change the fact there’s a huge lack of funding in public schools, or that there’s a huge lack of education for teachers and administrators about what dyslexia is.”

While a common perception of the condition is that it causes people to misarrange letters when they read or write, the actual mechanics of dyslexia are more complicated than that, said Dr. Stephanie Blenner, a pediatrician at the University of Massachusetts Medical School who specializes in the disorder.

“The primary deficit is phonological processing,” she said. “They have difficulty seeing how words are made up of letter sequences, and that they correspond to sound.”

Like many learning disabilities, there are also levels of severity, although Dr. Blenner said as many as one-in-five people have some degree of dyslexia.

With the crushing effect of impeding literacy development - a handicap that can also hinder progress in math as well, since that subject is now more word-based than before - dyslexia can have lifelong repercussions, she said.

“The human toll is huge,” she said. “These are kids who otherwise can be very capable. I’ve seen the downstream effects.”

The disorder is also believed to be inheritable, a fact that plays into the Bullock family’s story. Ms. Bullock said she believes she may be dyslexic herself - “I really struggled in school,” she said. But that hardly prepared her for dealing with her daughter’s torment from the condition.

As a first-time mother, Ms. Bullock said she started crying after Emma’s kindergarten teacher delivered the first assessment of her daughter.

“She looked at me and said, very nonchalantly, ‘she’s going to have to repeat kindergarten,’” she said.

Attending the Worcester school system at the time, Emma was quickly falling behind her peers in reading comprehension. Mid-year, Ms. Bullock switched her to an “amazing” new teacher in her school, but her daughter continued to have a hard time - and display a personality change that greatly troubled her mother at the time.

“She was the most outgoing, happy, bubbly kid,” Ms. Bullock said. “But she’d have a complete meltdown when she went to school. I thought she might be anxious.”

But when the Bullocks asked the school to test her daughter to find the root of her learning challenges, ”(the school administrators) really talked me out of it,” she said, adding she was told they “don’t like to label kids” that early.

When the family moved the following year to Holden, Emma’s struggles continued in the Wachusett school system, as did Ms. Bullock’s efforts to pinpoint her condition. Before leaving Worcester, they had managed to obtain an Individualized Education Program for Emma - a key legal document outlining her specialized education needs - but it was only for the vague category of a “language-based learning disability,” Ms. Bullock said. Whenever she pressed school staff to consider that Emma might be dyslexic, “they’d swear to us up and down, ‘we cannot make that diagnosis,’” she said.

Eileen Hagerty, an attorney at the Boston-based firm of Kotin Crabtree & Strong who specializes in special education rights, said it’s not unusual for schools to avoid identifying dyslexia in the lower grades.

“It starts with the federal special education regulations,” she said, which classify dyslexia as a “specific learning disability.” ″Basically, the kid has to fail first, and that’s not true of any other category of impairment. That means a lot of students don’t get diagnosed with dyslexia until they’re in third grade or older.

“A lot of educators, especially those in regular education, will say, ‘just give them a little time.’ But weeks, months (of education) get lost that way.”

Even after families present an official diagnosis of dyslexia for their child, some schools “still fight against it,” Ms. Hagerty said. “They don’t want to say the word.”

That was the case for the Bullocks, who finally, after exploring other possible answers like vision issues and anxiety, obtained Emma’s long suspected diagnosis of dyslexia from the Center for Children with Special Needs at Tufts’ Floating Hospital for Children while she was in fourth grade.

“She high-fived me,” Ms. Bullock said. “She was so happy. She was telling me, ‘we were right, mom, we were right.’”

But Emma’s school didn’t agree with the testing result, Ms. Bullock said. By fifth grade, her best option for getting the services she needed was to move into a language-based program at the district’s Paxton Center School, where she would be alongside older, lower-functioning students with a broad range of learning disorders, according to Ms. Bullock.

“It was the worst year of Emma’s life for sure, and the worst of mine,” she said.

“I would cry every day when I got home,” Emma said. “I’d tell my mom, ‘why can’t I just be happy?’”

The frustrating part for Ms. Bullock is that they knew what Emma needed: consistent instruction in the Orton-Gillingham model, a nearly century-old teaching approach for dyslexic students. But in the public schools, she said, there wasn’t enough resources or time to provide what the family believed to be a sufficient amount of that specialized tutoring - a reality she doesn’t blame on the school staff.

“We knew it was beyond the teachers and even some of the administrators,” she said. “It’s unfortunately about budgeting and staffing.”

But Ms. Bullock said she still felt a growing urgency to advocate for her daughter - by this time they had hired a special education lawyer to represent them - especially as Emma descended deeper into a troubling emotional state. It was when Emma one day asked her about what happened to Kate Spade - the fashion designer who took her own life this past June - that Ms. Bullock realized she was at a critical crossroads.

“If this is really what she’s thinking, what am I going to do?” she said she lied awake that night thinking. Even if there was an answer - putting Emma in a special private school program - there was also an even trickier question: “Where am I going to get the money?”

Finally this year, the family got what they wanted: an out-of-district placement at the Carroll School in Lincoln, which has one of the state’s top programs for dyslexic students. Already, Ms. Bullock said, she and her husband, Adam, have seen a world of difference in their daughter, who not only receives the appropriate instruction for her disorder at her new school, but is also among peers going through the exact same battle.

“I like that everyone’s just like me - I can just be myself, and not worry about feeling stupid,” Emma said. On the contrary, being at the Carroll School has taught her to appreciate her condition: “I don’t think it’s something bad,” she said. “It just means your brain learns differently.”

That renewed self-confidence may be the most rewarding outcome of the family’s long struggle on behalf of their daughter, said Ms. Bullock, who recalled with sadness how Emma used to rattle off potential careers that wouldn’t require any college or reading or writing in general.

“Now I want to be a lawyer,” Emma said. “Or to be an advocate for people like me.”

Ms. Bullock said she’s also become an advocate for the dyslexia community this past year, reaching out to politicians, community leaders, and anyone else she could think of with the influence to institute change in local schools. The statewide campaign that led to the passage of the screening bill last month began with similarly modest goals, said Nancy Duggan, executive director of Decoding Dyslexia Massachusetts, an advocacy group for the disorder.

“We started out as an organization lobbying for some awareness,” she said, but the abundance of new research into the condition over the last few years raised the stakes.

Of particular importance, she said, have been recent discoveries into the efficacy of early intervention.

“It makes a huge difference for kids - you can to some degree rewire the brain,” said Dr. Blenner, who said early screenings look for indicators like family history, phonological awareness, alphabetic knowledge, and rapid naming - the last of which tests a child’s ability to quickly name things shown to him or her.

What the new law will require schools to do has yet to be sorted out, however; the bill requires the state’s education department to develop guidelines for screening for dyslexia.

According to school officials, testing for and remediation of dyslexia is already taking place in schools, and Tom Scott, executive director of the Massachusetts Association of School Superintendents, said it’s unclear yet how much of a difference the new law will make on those efforts.

“I can’t imagine we’re going to find more (dyslexic) children than we would have otherwise, although I could be wrong,” he said. “Most of these children will be identified at some point, and there would be interventions taking place.”

School officials he’s talked to, meanwhile, have “mixed feelings” about the new measure, which creates yet another special education mandate they’ll have to follow - and pay for.

“There’s no question about it,” Mr. Scott said, that dyslexia, like many other special needs, is putting pressures on underfunded districts. The fact districts will apparently have to shoulder the costs created by the new law, he added, “is obviously a concern,” even while education officials see the value of early screening for the disorder.

“If additional screenings are to be required under the proposed law and through (Department of Elementary and Secondary Education) guidance, we are hopeful that the state provides funding to help offset the costs to already financially overburdened school districts,” Wachusett Superintendent Darryll McCall said in a statement.

Mr. McCall said his schools already have screening procedures in place to identify students struggling with reading and/or writing.

“Our district is in the second year of a new reading program that will assist teachers in working with students who may have challenges with reading or writing,” he said. “As the program progresses, we are hopeful that we will see a decrease in the number of students in need of additional support.”

Ms. Bullock, meanwhile, just wants schools to acknowledge that dyslexia should and needs to be looked at as a distinct disorder.

“I’m not resentful” after her ordeal with the public schools, she said, but she doesn’t want to see other families go through the same thing.

“This isn’t about diagnosing kids and sending them all to the Carroll School - that shouldn’t have to happen,” she said. “We should be able to service the most common learning disability in our (public school) districts.”

In the meantime, she said she and her daughter continue to try to raise awareness about dyslexia and provide support to other families. She is in the process of establishing a new support group in the Central Massachusetts area, for instance, that would meet monthly.

“It’s a lonely battle. You don’t see people experiencing (dyslexia),” Mr. Bullock said, adding if there’s one silver lining to Emma’s experience, it’s that her daughter has embraced the role of speaking out about her disorder. “She’s been the voice that’s helping other people.”


Online: https://bit.ly/2RRrrLY


Information from: Telegram & Gazette (Worcester, Mass.), http://www.telegram.com

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