TAUNTON — Fifth-grader Amari Kaye is 12 years old, but because of her dyslexia, she began her year at Martin Middle School this year reading at a third grade level.
“Going into fifth grade, you’re supposed to be able to read and write paragraphs, and she was barely able to write a sentence at that point,” said her mother, Lexi Kaye.
Kaye said she first had concerns about Amari even before kindergarten because her speech was delayed. She brought her in to try to get her on an Individualized Education Program, but her elementary school wanted to give Amari a chance to catch up first.
“They just said ‘She’s just starting off a little late with her speech,’ and they kept an eye on it,” she said.
But by first grade, Kaye said, her mother brought up to her that she noticed signs of dyslexia in Amari. Her mother was familiar with dyslexia because Kaye’s brother had been diagnosed with it.
Amari had common signs of dyslexia, including mirrored writing and an inability to rhyme.
At that point, the decision was made to hold Amari back at East Taunton Elementary. So Kaye brought her in to be evaluated for dyslexia at Boston Medical Center.
Researching how to meet her needs
Amari was diagnosed with a specific learning disorder including dyslexia. So Kaye started doing research into what Amari needed as a dyslexic person to learn to read.
What she found was that certain types of reading programs are proven to help dyslexic students more, especially those that are highly structured and focus on multi-sensory learning and phonemic awareness.
So Kaye began asking the school to provide such reading programs to Amari in her IEP, but quickly learned that you cannot request a specific reading program.
Though at least one of the reading programs the school was providing was multi-sensory and structured, Amari was still sliding back in school, which is not uncommon, as no one program will work for every dyslexic student.
So Kaye hired private tutors who could teach other reading programs to Amari in the hopes that it would help her catch up, which was, of course, expensive.
In 2017, Amari was admitted to the Hamilton Institute summer program for dyslexic students at the Wheeler School in Providence, which uses the best-researched reading program for dyslexic students, and which most structured reading programs are based on, called Orton-Gillingham.
“She went in there with the lowest scores, and she left with the highest,” Kaye said.
Amari went into the next school year with renewed confidence, but again began to regress, with the tutors barely keeping her afloat.
IEP process often contentious
Kaye has fought with the school over the IEP over the years, even hiring an advocate and asking for more time with specialist teachers and different types of programs. But the school felt what they were providing for Amari was appropriate.
Legally, it was, as there is no state mandate for specific instruction for dyslexic students other than whatever program they have be backed by research, only guidelines for consideration. Even so, slowly, Kaye said, they gave in piecemeal.
Meanwhile, what Kaye really wanted was simply to see her daughter flourish instead of struggle.
“This poor child is suffering emotionally,” she said. “At this point, she’s so far behind her peers.”
Amari has been improving slowly this year, Kaye said. She said she’d greatly benefit from a specialized school, but they are more expensive than going to college.
Reaching out to help other families navigate dyslexia
Last year, Kaye started a Facebook group for parents of dyslexic students at Taunton Public Schools to provide advice and support to one another and help figure out what their children needed to succeed. Currently, it has around 30 members.
Kaye said she wishes she had gotten an advocate and independent evaluation of Amari sooner instead of waiting to see if she could catch up, and she wants keep others from having the same experience.
“It’s impacted her so much. I mean school refusal and just shutting down completely. She stopped doing her after school curriculum, quit dance, wanted to quit doing all these different things because her confidence just plummeted,” she said.
“It was just heartbreaking to see this kid who has just said, ‘I’m not smart. I’m never gonna be smart.'”
Other children like Amari
Kaye and her daughter aren’t the only family at Taunton Public Schools going through this.
Nancy Simas, who is a part of Kaye’s Facebook group, has a daughter named Savannah who was diagnosed with dyslexia at the end of second grade.
Simas said Savannah had no signs of dyslexia before kindergarten, but she soon realized Savannah was having trouble recognizing letters. She wanted to get Savannah on an IEP, but she said Savannah’s test scores weren’t low enough.
At the time, she had no idea that Savannah could have dyslexia.
Finally, she took Savannah to a pediatric neurologist at Massachusetts General Hospital, and got the diagnosis.
“[I felt] relief to finally have an answer as to what was going on,” she said. “But also, as a as a parent, you feel sadness because you know that there’s a long journey ahead for your child.”
Like Kaye, Simas has felt that her concerns have fallen on deaf ears at Chamberlain Elementary as she fights over Savannah’s IEP and Savannah continues to lag behind her peers. She has also hired a private Orton-Gillingham tutor for Savannah, which she said is expensive.
“My daughter is very intelligent. She’s very self aware. She knows she’s dyslexic. She doubts herself all the time,” Simas said. “She exhibits anxiety over this because she hasn’t been accommodated and taught in the manner that she needs.”
Taunton Public Schools responds
Taunton Public Schools had this to say about their accommodations for dyslexic students:
“The Massachusetts Dyslexia Guidelines recommend to consider broad categories: presentation, setting, response and timing, or scheduling. Taunton Public Schools considers all factors when making accommodation recommendations for individual students.
“As such, accommodations are dependent on a student-by-student basis and therefore all accommodations may be different as each student receives specialized accommodations to best suit their individual needs.
“…To ensure all students receive quality instruction, we revisit our students’ accommodations from year to year on an as needed basis. If we identify a student who may need additional accommodations, we will work with them to ensure that they receive them.”
Decoding Dyslexia Massachusetts
Nancy Duggan is a former school counselor and the executive director of Decoding Dyslexia Massachusetts, the state branch of a national organization that works to raise awareness of dyslexia and empower those with dyslexia and their families.
Duggan said that Simas’s and Kaye’s stories of struggling with dyslexia and how to treat it are not uncommon. She said one of the biggest problems for families is a tradition in schools of waiting for children to start failing at reading before trying to help them.
“[10 years ago] you couldn’t even be considered for dyslexia until they tried to teach you to read and you fail,” she said. “But if you think about that, we wouldn’t say to a student that has visual blindness, ‘No Braille for you. Why don’t you just try the classroom?'”
While waiting for a child to fail already is suboptimal because it means the child is behind, Duggan said an even bigger problem is that once a child falls behind, it is very hard for them to catch up.
“What was happening is that kids were not being identified as students with dyslexia. So by the time they got identified, it was late, the kids were already behind,” she said. “We know that kids that are behind tend to stay behind. It’s very hard to close the gap.”
Part of the reason that this happened, Duggan said, is that people believed dyslexia was hard identify until a child became unable to read, and then if they couldn’t learn to read, they assumed all those kids had dyslexia. Both of these assumptions are wrong, she said, though there is no one accepted test for dyslexia.
In 2018, the Massachusetts Legislature tried to help this problem by passing a bill that demanded the Department of Early and Secondary Education come up with guidelines with action items to make public schools institute research-backed dyslexia screening methods in early childhood.
Duggan said this is an example of what she and other advocates would like to see, which is for the schools screen to intervene early, and in doing so get kids the help they need to learn to read early so that they can be on track by third grade.
“Early screening leads to early intervention,” she said.
As more information is getting out about dyslexia, states and schools are changing how they deal with dyslexia, Duggan said. Most of all, she said, she hopes to see a preventative model for dyslexia implemented everywhere.