Dealing with dyslexia

Parents push for more screening, support for students with dyslexia

PHOTO: Provided by Lori Smith
Fourth-grader Ryann Smith meets Education Commissioner Candice McQueen at a statewide literacy event, where she also hand-delivered a letter about dyslexia (below) to Gov. Bill Haslam.
Lori Smith wonders what life would be like for her daughter if she’d been screened for dyslexia in kindergarten instead of in the third grade.

Now a fourth-grader at Moore Magnet STEM Elementary School in Clarksville, Ryann is bright and creative. She loves drawing and musical theater. But she’s also reading below grade level. Her mom believes that, if Ryann had been diagnosed sooner with dyslexia, a learning disability that affects how a person processes written words, she could have received the supports she needed right away.

“We would have a totally different experience,” Smith said. “She wouldn’t be behind right now.”

Smith and a coalition for parents across the state are pushing for a bill that would require early screening for dyslexia, which affects up to one in five children.

The bill is scheduled to considered in House and Senate education committees on Tuesday and Wednesday after passing unanimously earlier this month in a House subcommittee — unusual for a bill with a fiscal note of more than $1 million.

Students with dyslexia have difficulty recognizing words and sounds and spelling, but can learn how to read with a specific multisensory approach that combines touch, sound and sight.

But because there’s no screening process in Tennessee public schools, the disability often goes undiagnosed and untreated. Even when it is diagnosed, schools often don’t have the proper training or tools to address the disorder, resulting in kids getting inappropriate interventions that do more harm than good.

According to the Yale Dyslexia Center, the earlier dyslexia is identified, the better. Dyslexia can be identified before a student even enters school, preventing children from getting far behind, discouraged and disengaged. Dyslexia also has been linked with higher rates of high school dropouts and even imprisonment and suicide.

Such concerns inspired Smith to get in touch with Rep. Joe Pitts, her local representative.

“I told Rep. Pitts, ‘I can make sure my child can get the help she needs. But when you’re talking about one in five students are struggling with this — who is advocating for other kids, whose parents can’t read or can’t recognize that their child is struggling?’”

With the help of Professional Educators of Tennessee and other parents involved in Tennessee’s chapter of Decoding Dyslexia, Pitts drafted the proposal to help more Tennessee students with the disability get the help they need.

Despite the prevalence of dyslexia in schools, the Tennessee Department of Education didn’t recognize it as a learning disability until 2014, when the legislature passed the “Dyslexia is Real” bill, mandating that dyslexia be covered in teacher training each year.

The federal Office of Special Education Programs then specified to states that dyslexia can, and should, be accounted for in students’ Individualized Education Plans, or IEPs, which dictate what kind of supports they receive in class and during testing.

But that only helps if your student has been identified with dyslexia in the first place.

Ryann's letter to Gov. Bill Haslam. Because of her dyslexia, many 'b and d' reversals, and that she doesn't hear sounds on multi-syllable words.
PHOTO: Provided by Lori Smith
Ryann’s letter to Gov. Bill Haslam includes many b and d reversals because of her dyslexia.

Lori Smith and her husband Shane struggled to have Ryann screened because, although she was below grade level in reading, she typically performed average on the state’s “Response to Intervention,” or RTI screeners, which are meant to single out struggling students in order to provide them with help. They knew Ryann couldn’t recognize that words like “hat” and “cat” rhymed and that she mixed up sounds, but teachers waved off concerns. The Smiths were repeatedly told not to compare Ryann to her older brother, a gifted reader. Finally, they had Ryann privately tested, and found what they had suspected all along: she has a learning disability.

Meanwhile, in Nashville, the Thorsen family was having an almost identical experience. Like Ryann, Clara Thorsen is a gifted student who loves books and art. But she was beginning to hate school because of her struggle to read. School officials told Clara’s parents that they couldn’t screen Clara for dyslexia until she had failed RTI screeners several weeks in a row.

Fortunately, both of Clara’s parents are attorneys familiar with federal law. And Clara’s mom, Anna, also has dyslexia. They provided a letter from the U.S. Department of Education prohibiting states from using RTI to delay screening for a disability.

"If you have a parent who doesn’t know they have a right to do any of this, you’re completely screwed."Anna Thorsen, parent

“We were in some ways uniquely prepared for the battle that was about to ensue,” said Anna Thorsen. “If you have a parent who doesn’t know they have a right to do any of this, you’re completely screwed.”

Even once a student is diagnosed, schools might not have the resources, such as audio books or multisensory curriculums, that can help kids learn to read. Julya Johnson, co-founder of Tennessee’s Decoding Dyslexia, remembers feeling at a loss when her son David was diagnosed with dyslexia, but his school didn’t have a program aimed toward learners like him, rendering his intervention time unproductive.

“I finally got him identified, he’s being pulled out of class, and it’s for something that can’t help him,” she recalls.

Johnson had to research and advocate for change at the district level before her son was finally placed in a dyslexia-specific program.  Parents of students with dyslexia say teachers need training about dyslexia, kids need better screeners, and schools need to provide a multisensory curriculum.

“It’s more than my child’s school,” Smith said. “It’s truly a statewide issue.”

Ryann and Clara have written to Gov. Bill Haslam and Education Commissioner Candice McQueen to ask for more support for students like them. Ryann also testified to a House subcommittee, urging them to pass Pitts’ bill, which requires the proper interventions for dyslexia and creates an advisory council, as well as mandates screening for kindergarten through second-graders.

“I did not know why reading was so hard,” Ryann told lawmakers. “I did not think I was smart. … I would come home crying and ask my mom, ‘Why is reading so hard? I love books!’”

Ryann told the panel that things are looking up for her now that she has a diagnosis, but she wants to help more kids.

“This bill is important because most kids don’t have the money to be tested,” she said.

First Person

I was too anxious to speak in class. Then the adults at my school teamed up to help me.

PHOTO: Getty Images

“Which group wants to present first?” the teacher said.

That day, the whole school had worked on mini-projects in groups, and now it was time to share our work with students from different grades. I was surrounded by a lot of faces I had never seen before. I was only a freshman and everything felt new.

My heart started beating fast, like it was trying to pop out of my chest. I started sweating, even though the air conditioner was on. I tried to dry my trembling, clammy palms by rubbing them against my pants. I wanted to raise my hand and say I wasn’t feeling well, but my mouth clamped shut and it felt like gravity made it impossible for me to lift my arm.

Usually I would get a little nervous when I had to do presentations, but I could always get through them. This day was different.

When the teachers closed the classroom doors, I felt trapped. I wanted to run outside, take a deep breath of fresh air, and calm down. To distract myself, I started to pinch my arm under the table. Then it was my group’s turn, and somehow my legs managed to make the motions to get me in front of the class.

When it was my turn to speak, the words I was supposed to say didn’t come out. I froze. Finally a familiar voice brought me back to reality. It was one of my groupmates presenting my part for me.

After we returned to our seats, I hugged my book bag. It wasn’t as soft as my pillow, but it was the only comfort I was able to find. I stared at the floor, which seemed like the only thing in the room that wasn’t disappointed in me. Once the bell rang I speed-walked past everyone to the train. As soon as I got home, I cried.

Unfortunately, memories of that awful afternoon stayed with me. I began to panic every time I had to talk to new people, which had never been a problem for me before.

The night before a presentation I wouldn’t be able to sleep or eat. I was afraid to tell my teachers how I was feeling; I didn’t want to be seen as asking for special treatment. Fortunately, when I did presentations, I managed not to freeze like before, but I still got incredibly nervous and sometimes stuttered out my words. If I had the choice, I’d make sure I wouldn’t have a speaking part in group presentations.

In 10th grade, my English class read “The Perks of Being a Wallflower.” I thought it was going to be just another lame book, especially since I hated reading. But when we finished the first chapter I felt the main character, Charlie, was speaking directly to me. It’s made up of letters he writes to an anonymous person. Charlie has a hard time talking about his emotions. When something bothers him, he stays quiet.

As an introvert, I related to Charlie. Besides the anxiety I got around presentations, I often felt bad about myself. So I decided to write an honest letter to someone I trusted: my English teacher, Ms. Boeck. I wrote about all my insecurities: my weight and my appearance, and how I felt worthless. While I was writing, I realized that I was depressed, my anxiety was getting worse, and I needed to get help.

I woke up early so I could approach Ms. Boeck before class. As I stood in front of her door, I got the sudden urge to turn around and throw out my letter. But then I remembered why I had written to her. I could tell she cared for each student, and I had seen other kids go to her for help.

I walked into the classroom and Ms. Boeck greeted me with a smile. All I had to do was give her the letter I was clutching tightly in my right hand. I knew this was the first step toward letting go of the pain in my chest that came from silently holding onto my struggles.

“This is a letter I wrote explaining something personal about me, and I wanted you to read it so you can help me,” I said, my voice cracking.

“Thank you, I’ll make sure to read it.” My teacher smiled and held eye contact, as if to assure me that whatever I’d written, she and I were going to find a solution together.

Around that time, I also told one of my closest friends about my anxiety. She understood, even though she didn’t have anxiety herself.

“Don’t worry, Natalie,” she said. “If you need help, you can come to me.” For the first time, I felt supported by people who cared about me.

After Ms. Boeck read my letter, she invited me and my friend to have lunch with her in her classroom. I learned that Ms. Boeck had also been diagnosed with anxiety. I couldn’t believe it, since she spoke with confidence in class.

Two weeks later I wrote another letter to my crew leader, Mr. Afghahi. Unlike the letter to my English teacher, this one acknowledged that I’d been having suicidal thoughts.

I found Mr. Afghahi in the hallway on a Friday after school. “I wrote you a letter,” I said.

“Is something wrong?”

I shook my head no as he took the letter. I left before he could ask any more questions.

On Monday morning Mr. Afghahi pulled me aside. “Thank you for sharing this with me,” he said. “The part of your letter about your suicidal thoughts concerned me. I don’t want to lose your trust, but I think it’s best if you go see a counselor who can help you. ”

I nodded. I didn’t want to speak to a stranger, but I knew it was the right decision.

A few days later, Mr. Afghahi walked me to the counselor’s office. She introduced herself with a warm, welcoming grin that showed all her teeth. I forced a smile.

After Mr. Afghahi left, the counselor talked about my letter as if she had memorized every word. It made me uncomfortable. I had only intended for Mr. Afghahi to know these things.

As I looked around the counselor’s office, a photo of her and her daughter caught my attention. It made me imagine the sadness a parent must feel when their child tells them about the kinds of feelings I was having. I pictured my mother with sorrow in her eyes.

The counselor asked me to clarify what I meant by suicidal thoughts, and when my depression and anxiety started. My vision began to blur as tears started forming, but I managed not to cry.

She told me I had to talk to my parents. In fact, the school required their approval for me to keep seeing her. I didn’t want my parents to know because they already came home tired and stressed. I wanted to be the “perfect daughter” to make their lives easier. I was also nervous because they were too busy to come to my school, and they don’t speak much English.

When I got home, my mom told me to go with her to her doctor’s appointment. In the empty waiting room, I told her that I was going through a tough time in school and felt anxious and depressed. I looked down when I saw her eyes redden and the first tear roll down her cheek. I had seen her cry before, but I had never been the reason.

I wanted to cry too, but I held it in. I felt as if my mom was asking herself what she’d done wrong, which broke my heart. My mom wrote a letter in Spanish saying I could see the counselor.

Over time, talking to my counselor got easier. After a month, I felt comfortable expressing myself to her. I even consider her a friend. Talking about my insecure feelings has helped me understand them better. I feel better about my appearance. The counselor made me do an exercise where I had to consider the positive aspects of my body, which helped me a lot. I’m less anxious now and I don’t feel as depressed. I keep my mind busy and have more support and people to talk to than I did before.

The counselor also taught me breathing exercises that help me calm down when I’m anxious. I close my eyes, inhale, and wait for two seconds to release the breath. When I close my eyes it feels like the world has stopped. No one else is around; it’s just me and my blank mind. My body is no longer tense. The silence is comfortable, not awkward. When I exhale, I feel like I’m letting go of everything that made my day bad.

Now I encourage myself to try new ways to practice speaking in front of people. I’ve started participating in Socratic seminars, which are open-ended discussions we have in class. I make sure I’m prepared and say something, even if I’m feeling nervous. Though I still don’t speak a lot, I usually get at least one idea out.

I’m a junior now, and hopefully by the end of the year I will be able to speak at least three times in one discussion. I still get really nervous in large groups and new situations. But when I feel like running away, I think of the progress I’ve made. I may still stutter or mess up in a presentation, but at least now I know that I’ve tried.

It was hard to open up, but having people to talk to about my anxiety has been a big help. Besides my counselor, I’ve told some other friends, though I didn’t go into the details. I also talk to my three brothers now, and they help boost my confidence and make me feel safe. My parents know about my anxiety, but I only tell them about my accomplishments, like participating in a discussion, so they are able to feel proud of me.

Now, before I have to give a presentation, I do things to prepare and feel more confident. I drink water to hydrate my body, do my breathing exercises in a quiet area, and practice my presentation with a friend. This year, we had to give another group presentation like the one on that awful day when I was a freshman. When it came to my part, all my fears went away, and I spoke loud and proud.

Natalie Castelan is a student at Expeditionary Learning School for Community Leaders in Brooklyn. This piece originally appeared in YC Teen, a project of the nonprofit Youth Communication. 

the best

Indy counselors share secrets to get middle schoolers on track for college scholarships

PHOTO: Dylan Peers McCoy/Chalkebat
Students at Northwest Middle School

Indiana makes a promise to students from low-income families: maintain a 2.5 GPA and fulfill basic steps throughout high school, and the state will foot the bill for up to four years of college tuition.

But there’s a catch: For students to qualify for the aid, they must sign up for 21st Century Scholarships by the end of eighth grade, before many students even begin considering how to pay tuition. It falls on school counselors to let families know about the program, help them apply — and follow up relentlessly.

So it was a feat when counselors at Northwest Middle School in Indianapolis Public Schools were able to get nearly 100 percent of eligible students to register for the scholarships in 2017, the latest year with state data. That’s nearly double the signup rate across Marion County.

Now, the city is hoping that other educators can learn from Northwest and other successful schools. In May, Indianapolis Mayor Joe Hogsett’s administration launched Indy Achieves, a campaign to help more residents go to college or other post-high school training. One piece of the initiative is a coordinated effort to boost participation in 21st Century Scholars that includes a newly released toolkit for other guidance counselors.

The toolkit explains how educators can track which students have enrolled in the program, and it includes sample recruitment plans and letters to parents. It also offers practical tips, such as giving parents the paper worksheet instead of asking them to apply online and sending the form home with other permission slips. Finally, Indy Achieves offers administrative assistance submitting applications.

“I’m here today in no small measure because you all have this process figured out,” said Hogsett in a ceremony Monday.

At Northwest, the campaign to get students money for college had two prongs. First, it depended on getting students, teachers, and even counselors excited about the scholarships, staff say. Classes competed against each other to see who could get the most students signed up, with the promise of a pizza party for the winning class.

Last year, they upped the ante by offering ice cream and candy bars to students when they brought in their applications. When students saw others getting the rewards, it was a reminder to bring in their own forms, said counselor Vernita Robinson.

It was also important that teachers were enthusiastic about the effort, say the counselors who led the initiative. Even the counselors developed a spirit of competition as they tried to sign up as many students as possible.

“You just have to make it fun for the kids, and you have to make it fun for yourself,” said counselor Theresa Morning.  “I don’t know if we really changed any of our methods last year except for, we made a point to make sure last year that we had every child signed up.”

That dedication to getting students signed up is the second reason why educators at Northwest believe they were so successful. Beginning in September, they told parents about the scholarships, and for months afterward, they used a spreadsheet to track which students had applied. They sent home official letters telling families about the program. And as the year progressed, they called families to follow up.

“I think the key is to not stop at a handful of applicants,” said counselor Nicole Reid. “Just keep going until you have everyone on your roster that’s in eighth grade enrolled.”

All three counselors have left the school for other Indianapolis Public Schools campuses this year, following a districtwide high school reconfiguration that ultimately led Northwest to convert from a school serving grades seven through 12 to a dedicated middle school.

Indianapolis Public Schools interim superintendent Aleesia Johnson challenged the new students at the school to continue the success. “You all have to now carry on that legacy,” she said.

“We are all as a city committed to our students and our young people being able to go on and be successful,” Johnson said. “You do your part, and we commit to do ours.”