know a dyslexic

Jenna and Shannon

We recently had the opportunity to chat with super dyslexia advocates Shannon and her 11-year-old daughter Jenna about school, self-advocacy, and... snakes!

We contacted Shannon after she shared a photo of Jenna brandishing her very own dyslexia ID card—a homemade creation inspired by one of our blogposts

Originally created by Dr. John Frauenheim at the Beaumont Hospital in Michigan to help dyslexic students self-advocate, the ID cards sparked much conversation in the dyslexia community and we knew it was only a matter of time before we had DIY-ers crafting their own.

Turn on text-to-speech and ear-read along (or eye-read!) for our full interview with Shannon and Jenna.


Headstrong: Before we talk about dyslexia, we think it’s very important to discuss one of Jenna’s other passions: snakes. Jenna, how much do you know about snakes?

Jenna: A lot. I have 35 of them. 15 hatched the other day...

Headstrong: 35?! Snakes hatch? Like out of eggs?

Jenna: Yeah. And some breeds give birth live.

Headstrong: What kind of snakes do you have?

Jenna: Ball pythons. Carpet pythons. Corn snakes. King snakes. Milk snakes. Boas.

Headstrong: You have a boa!?

Jenna: I have a few. One of them is six feet long—but I can carry her. She’s really nice. Her name is Nagini. 

Headstrong: Nagini...? 

Jenna: From Harry Potter.

Headstrong: So how did you end up with all these snakes?

Jenna: I don’t know. We were told that if we kept our room clean for a month, we’d get a reptile as a pet. My big sister did it first and then my dad wanted a snake and then I wanted a snake. And then... we just kept getting more and more snakes! My favorite snake is my corn snake Tiny. 

Jenna and sisters with snakes galore

Headstrong: Is he actually tiny?

Jenna: No! He’s the biggest corn snake. Our friend who breeds them says he’s ginormous.

Headstrong: Maybe it’s time for us to give snakes a second chance! Ok, let’s talk about a different animal. Shannon, how did you find out about Headstrong?

Shannon: When Jenna was identified earlier this year with dyslexia, I did what every parent does and went looking for resources. I came across Ben Foss’s book, “The Dyslexia Empowerment Plan”—bought it, read it, took everything to heart, and set out to find the best ways to help Jenna, who had struggled for many years. She’s 11 now and has only just been identified. 

Headstrong: You learned about the dyslexia ID card from our blog. What prompted you and Jenna to make one on your own?

Shannon: Well, we’ve been encouraging Jenna to have her own voice and I thought this was a simple solution to put it into practice. She could go to school and if she had a teacher who didn’t know her, the teacher would understand why Jenna is pulling out audio books when the rest of her class is eye-reading. In this way, she could easily explain what she needed without having to be verbose.

Jenna: It also made it easier for my table when I took out a little computer and they said, “Why do you have that!?” I could hand them my ID card and say, “Hey, just read this!” It made it a lot easier.

Headstrong: So what do these cards look like and what does someone need to make the card?

Jenna: You need a printer and a computer and my mom got the doctor’s signature and the stuff from the children’s hospital and then she wrote a bunch of facts that we might use on my IEP plan.

Shannon: We took 2 pieces of paper so we had a front and a back, and made it into a 3 x 3 square. On the front we would put information about the physician, Jenna’s name, and the certification that she experiences dyslexia, which compromises reading and spelling ability. On the back we printed what we felt were the key IEP points that we wanted addressed by someone coming in to the classroom who didn’t know Jenna.

We laminated and hole-punched it, and now she has a lanyard that she can wear it on or keep in her pencil bag.

Jenna and her dyslexia ID card

Headstrong: Will you share your IEP points with us?

Jenna: Yes. My IEP says:

  • I may use audiobooks for reading (Nook / headphones).
  • Students who correct my papers are mutually agreed upon by me.
  • During all tests, please be available to read words, sentences or to paraphrase questions as needed.
  • I use a Forte (word processor and headphones) in class.
  • Allow me to skip answering / reading aloud out loud at my request. 

dyslexia card with IEP points

Headstrong: That is amazing! After you made the card, what was the next step?

Shannon: We took it to the pediatric neurologist from Children’s Hospital who had identified Jenna and explained the idea to him. He was intrigued because he has patients with other LDs (learning differences), not just dyslexia, who might benefit. He immediately signed it, and was very encouraged to see all of facts and needs from her IEP on the back.

At the school we showed it to the Special Education resource teacher who agreed that it was a very helpful idea, especially because it didn’t cost us anything! And again, that it could help students who aren’t necessarily dyslexic but who have other needs.

Headstrong: Jenna, tell us about the first time you used your ID card at school.

Jenna: It was in the of middle of the school year, and my regular teacher was gone so we had a substitute for two or three days and, well, I was nervous at first to show him the card so I asked mom to come with me. She did, but she made me talk.

Headstrong: And what did you tell him?

Jenna: I have dyslexia and here are some of the things I do. Here is the card we made so you know some of the facts. And he said, “Thank you very much for showing me this.” 

Headstrong: Well that sounds surprisingly straightforward. What was it like in class after that?

Jenna: It was easier even though my table was wondering what I was doing a few times. Sometimes I left the classroom to go to a different classroom and stuff. So I just let them read the card.

Shannon: I think it was also helpful because for a long time this year, the classroom was really kept in the dark about why Jenna does things differently. The teacher wasn’t encouraging and didn’t explain things. It wasn’t just a benefit to the teachers—the card opened up points of communication between Jenna and other students.

Headstrong: We’re curious, has anyone asked for help making their own cards?

Shannon: Not yet. As you’re aware, dyslexia is the elephant in the room that no one wants to acknowledge. It’s kept very quiet. Who else is dyslexic? Her school is not very...

Jenna: Dyslexia friendly...

Shannon: Right. We have kicked and fought our way to get her the accommodations she needed this year. Every step of the way has been a battle. Unfortunately, we have not been able to find others in this area who are dyslexic. But as we go through the journey, I have found people online and have shared the idea repeatedly, you know, this might be something that could help your child. 

Jenna: Um, I have pen-pals now who have dyslexia... and it makes a difference because I don’t care if I spell something wrong or if they spell something wrong cause I understand what they wrote.

Shannon: I think the key thing for us is that we want Jenna to feel comfortable with being dyslexic. It’s been an adventure for her. As the middle child, she’s seen one older sister fly in one direction and another fly in another direction and this year, with her identification, she’s starting to fly herself. We know how to help her now. Just like she has blonde hair and blue eyes, she has dyslexia and can embrace it.


 
Shannon and her family live in California in the Central Valley. Even though Jenna’s hair is naturally blonde, it currently has bits of pink and purple in it. Along with three other humans, Shannon and Jenna are the happy caretakers of 35 snakes and two lizards. 

Jenna and her pet snake
 

Please meet Stacey Cavaglieri, the newest addition to our stellar volunteer team. Stacey will be covering the West Coast region and then some (hello Moutain Time Zoners!). Please give her a warm welcome on Facebook when you see posts coming in from California—and post on our wall or send private Facebook messsages if there are particular events or stories from your city that you would like us to highlight. Read on to hear more about Stacey and what she hopes to achieve for the dyslexia movement.

Welcome Stacey!


Dyslexia volunteer

Stacey is a mom of two, Hailey (10) and Ryan (7). She lives in San Diego with her husband, Michael, and is currently at home raising her kids. Before starting a family, Stacey worked as a sign language interpreter and in a before-and-after-school care center. 

Dyslexia was a part of Stacey long before she knew what the term even meant. As a child she was labeled a “slow learner,” but it was not until her daughter, Hailey, was identified in third grade that Stacey began to understand herself. 

Growing up unidentified until adulthood gave Stacey great insight into how important the dyslexia movement is, not only for the next generation but also for adults who continue to wrestle with their own feelings of shame. When Stacey learned about Headstrong Nation and read Ben Foss’s book The Dyslexia Empowerment Plan, she felt a big impact on her life. Ideas like “strengths not shame” and “Dyslexia is not a disease. It’s a community” began to shape her views on dyslexia. The notion that dyslexics are not broken, but simply learn differently, has lit the path for Stacey’s and her daughter’s journey. 

Stacey’s goals are to help her daughter have better experiences than she did growing up and to teach her about the value of strengths over shame. She is passionate about encouraging other dyslexics to stand up and tell their stories, and hopes to educate and support families, adults, and teachers to bridge gaps and create community. 

Stacey is excited to volunteer for Headstrong Nation and looks forward to opportunities to serve the dyslexic community.

Listen to Jeffrey share his experiences as a dyslexic leader within the US Coast Guard and his vision for the future. (The post below was only slightly edited & preserves Jeffrey's native tongue. Click here for an example of Headstrong Nation founder Ben Foss writing with his native (dyslexic) tongue)

Jeffrey Philips

1. Passed

How many of you remember sitting in “that seat”? 

The seat the teacher puts you in so she can ignore your questions. The seat that gets a “D” no matter how bad you do. The seat that is out of the way so you don’t bother anyone. One thing never happens in that seat: learning. How many of you have sat in that seat?

I was held back twice from Kindergarten to out of 5th grade. After that the schools would no longer grade me correctly, but they didn’t want to fail me anymore, so I was just given Ds. 

I hated school, but I hated it for a good reason. The school that was supposed to teach me reading, writing, and arithmetic, instead taught me to cheat, lie, and fight. I knew these things were wrong, and I hated the school and myself for this. 

I was homeschooled by my stepdad for two years after dropping out after 8th grade. My reading was around first or second grade level and I could not spell at all before being homeschooled. I spelled ‘of,’ ‘ove,’‘to’ became ‘toow,’ and a note I wrote to my mom read: “I love you WOW!” 

After school, I got married and joined the US Coast Guard. With my test scores, I barely made it in, and was called illiterate in boot camp. But my work said so much more, and I quickly advanced. As an E-5, E-6, and E-7, I was usually the youngest person in the unit to hold that rank, but still led those around me.

People say the military makes grate leaders, but that is not necessarily true. Very bad leaders can look like grate leaders when they can throw people in jail for not doing what they say. Good or bad is up to the individual. I found out I am a natural leader of people. The guys and gals that worked for me found my pride in them to be a great reword. They wanted to make me proud of them, and I usually was.

As an E-6, I was handpicked to teach Navy and Coast Guard Officers critical knowledge before going out to the fleet. As an E-7, I was chosen to WRITE the single most read document in the entire Coast Guard, the Enlisted Professional Military Education (EPME). While I was there I advanced to E-8, which put me in the top 2% of the Enlisted ranks. I should make E-9 in the next few years and this will put me in the top .2%. Although I did so poorly in school and had so many people betting against me, when I was working I was successful at almost everything I did. In the real world my dyslexia was a blessing not a curse.

 

Jeffrey child

2. Future

When I get out of the Coast Guard I want to start a career in politics, focusing on education. Not to get concessions for dyslexics but to have the system change everything they know about dyslexia. I don’t think we should be taught to learn how book readers learn (yes, I mean taught to learn), but to be taught how dyslexics learn. 
 
Take this scenario, for example: In a spelling test, you are asked to “spell the numbers in the mathematical term pi to the 5th decimal place.” If you get a number in the sequence wrong, you will get the whole question wrong even if it was spelled correctly. Would that be a fair assessment? If spelling problems were graded as if they were math problems, would it be fair to those who had trouble with math?
 
No. Then why is it fair to count answers wrong if they are spelled incorrectly in history, science, or literature classes? I don’t mind failing my spelling test because I can’t spell, but it is wrong to fail my history test because I can’t spell. I want to make spelling a subject and not an educational tool. 
 
Even in state universities, the standards on papers are old and antiquated. I don’t think I wrote a paper in college that didn’t come back to me with a grade that reflected my technical ability to write more than my knowledge of the material. When this was pointed out to the instructor I was invariably told, “This is the way it’s done.”
 

3. Community

Dyslexia is a larger community (~ 4 million) than the deaf and blind communities combined (~ 98,000). There are schools for the blind and schools for the deaf, so why aren’t there schools for dyslexics in every district? There are many publicly funded programs that cater to the needs of smaller groups than dyslexics, but these group differences are either easy to determine or the group has strong public awareness (e.g. autistic spectrum disorder & Down’s syndrome). Today no one would call a deaf or blind person dumb or a Down’s child retarded, but somewhere right now there is a kid being called stupid because s/he is dyslexic.
 
We need to get mad about this! We need to be mad that there are kids all over this country having their spirits broken by the ignorance of our society. It’s not okay to use the “N” word when referring to a black man or, as stated above, the “R” word when referring to a little Down’s girl and no one uses “deaf and dumb” for a mute person. So why is it ok to call a dyslexic child “Lazy, dense, slow or stupid”?
 
We need to flood our leaders and school boards and demand that they see us for who we are—individuals specially designed to lead, think, and innovate. Dyslexics can be the gratest human resource this country has discovered. All we need is to be correctly taught the fundamentals and we will create everyone’s future. 
 
We need to start voting dyslexic. Ask your representative if they are dyslexic. Ask if there is a dyslexic in their family. If they are dyslexic or have a close personal understanding of our issues, let this influence how you vote. It is ok to vote for people who know what it is to struggle.
 

4. You

“It is the theory which decides what we can observe.”
— Albert Einstein
 
Tell everyone you know that you are dyslexic. Write on blogs and comment on articles you find interesting. Share your insight and label what you write as “opinion of a dyslexic.” 
 
The world needs to know we are here, and as soon as they do they will want to know if their doctor is a dyslexic or if their CEO is a dyslexic or if their president is a dyslexic. We have been fallowing way to long—we were meant to lead. Make these thoughts your theory and the world will observe you as you are: a great person gifted with dyslexia!
 

5. One extra sidebar on dyslexia

We must not allow those in the educational system to tell us that eye-reading is the true sign of intellect. If discovery is inventing the wheel, intelligence is using that wheel in a practical manner, and education is passing that knowledge forword so it does not die with you. Before Gutenberg, dyslexics did all of these. We were the inventers, the holders of intelligence, and the educators of those that came after us. 
 
A person can lead at most 10 people, any more than that and you are leading leaders. Before books, society would have needed about 15% of people to have the ability to learn by word of mouth and pass this knowledge on to the next generation the same way. Dyslexics make up 10-20% of society so we could have naturally fit into this category, becoming the leaders of communities, as well as the doctors, lawyers, scientists, and engineers.  
 
(Phonics starts with a “P”!  I rest my case.)
 
 
Opinion of a dyslexic.
 
Jeffrey Phillips, Senior Chief Damage Controlman 
United Sates Coast Guard Active

Way to share, Nathan. Dyslexics have many strengths—and you're clearly living proof!

Proud of Headstrong Nation fellow Sean Stevenson, a dyslexic community advocate and entrepreneur that is changing the lives of young people in Columbus, Ohio.

"I am not broken. I am not damaged. I am not stupid." Watch Dyslexic Advantage's inspiring webinar with award-winning dyslexic artist Madalyne Hymas.

 

 

Learn more about Madalyne recent exhibition on dyslexia, now on view at The Smithsonian's Ripley Center. Learn more here

Ella

We received this essay from a middle-schooler named Ella about a particularly difficult experience she had as a dyslexic. It is hard to read, but it gives us an important glimpse inside a world that many people do not understand or have chosen to forget. Ella has since gone on to become her own best advocate and is currently attending a school which specializes in dyslexia and LD identities. Keep fighting, Ella. 


I’m sitting in the back of the classroom. I raise my hand high. My teacher does not call on me. There are 48 kids in my class. Then a young girl walked into the classroom and said “Is Ella here?” I got up and went outside to her. 

There were 3 kids there. Their names were Meadow, Nigel and my best friend Emma. One of the kids in my class yelled out, “That is for retarded kids only.” I felt empty and sad. Was I retarded? “No,” I said. My face became red as all 48 kids looked at me as I walked away into another classroom.

I walked into the room and felt angry and I sat down at a desk and had to read a fluency packet. Then we had to get up to level 7 and I was on 2. 

I walked back to class and sat back down at my real desk back with all 48 kids. The teacher gave everyone a huge book. The teacher called my name. I started to read the sentence. I stumbled over words and skipped the words I could not read. I looked up and everyone stared at me with a strange look on their faces. I felt my eyes starting to water. My friend beside me said “just ignore the class.” I kept reading. Then the words became blurry then the words went dark. 

The teacher said “Sam it’s your turn.” I heard him read and he didn’t even mess up. I felt stupid. When school was over a student came up to me and said. “Why do you read so slow?” I felt my tears trying to burst out. I breathed in and out and said, “Why do you care?” 

I walked away slowly and felt upset and mad and wondered if I hurt his feelings by saying “Why do you care?” I wanted to apologize but I couldn't I was crying too much. I ran into the bathroom and sat on the ground. Then my three friends walked into the bathroom and asked me why I was crying. I lied and said because I hurt my knee. I lied because I didn’t want them to think I was dumb. I lied because I was embarrassed. I heard my mom call my name so I ran out of the bathroom pretending to look happy as we drove home to my two sisters waiting for me.

Ella is a seventh-grade student who recently shared her story with us. 

Madalyne Hymas

Dyslexic Advantage will be chatting with Madalyne Hymas this Wednesday from 5:30 PM to 6:30 PM PST. Sign up to learn more about this inspiring young woman and her powerful perspective as a dyslexic artist. Register for free here!

Brett Kopf is the CEO and co-founder of Remind 101, a communications solution for teachers, students, and parents. He shares his journey with The Next Web on becoming a successful dyslexic entrepreneur below. If you've got 4 minutes, it's definitely worth a listen.

Read the printed article here.

Dyslexic Advantage

Close up of exhibition

Congratulations to Madalyne Marie Hymas, an innovative dyslexic artist who won an Award of Excellence for her entry in this year's National Juried Exhibition for Emerging Artists with Disabilities, Ages 16-25. Madalyne's bold exploration into what it means to be dyslexic can be seen at the Smithsonian Institution's S. Dillon Ripley Center through January 5th, 2014

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