parents

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.

Say hello to Headstrong Nation’s newly minted Facebook volunteers, Eileen Tait-Acker from Pennsylvania and Suzanne Edwards from Texas. Both Eileen and Suzanne have managed social media through their schools and organizations like Decoding Dyslexia. We are thrilled to have these two aboard so they can share their experiences as parents and leaders of the dyslexia movement. Also, we are still looking for a Facebook volunteer to represent the West Coast! It could be you! Learn more here.

Eileen is taking the helm of our East Coast activities, highlighting important news, events and activities happening in her region. If there are issues that you’d like to see us mention, please post to our Facebook page so Eileen can see and repost when appropriate.

Suzanne will be covering the Central region and will also look to fellow parents and leaders to help her cover important issues and stories that are relevant to the heartland.

We realize these “regions” are very large, and rounding up appropriate stories from every state may be a challenge in the beginning. That said, both Eileen and Suzanne will do their best to reflect the broadest scope possible.

Read on to hear more these two amazing women. Thank you Suzanne & Eileen for stepping up. (And to any West Coasters who are considering volunteering, get on it!)

The Headstrong Nation Team



Eileen and Evan

MEET EILEEN

Eileen is mom to David (16) and Evan (11). Evan is bright and dyslexic, one of those kids who didn't qualify for Special Education services in the public system, a child on the borderline between regular and Special Ed. Eileen withdrew him from public school and began teaching him at home through a public cyber charter school. Evan was re-evaluated a year later, and did qualify for services. Eileen spent the last four years as her son’s primary teacher and advocate.

Having gone through these experiences, Eileen decided to give back to her community by assisting other parents on the journey through dyslexia. It wasn't until after Evan was evaluated with a learning difference that Eileen and her husband realized how they, too, had struggled as children in the public school system of the 1970s. Neither got the kind of help they needed, and their unrecognized LDs affected their self-esteem, and every future academic and career choice they made.

"We felt like we were stupid, and we kept it all inside, not wanting to be revealed. We wanted Evan's experience to be different."

Eileen currently volunteers for Decoding Dyslexia PA. “It is my goal to prevent others from having to reinvent the wheel when it comes to getting help for their dyslexic children. If I can point someone in the right direction of supports and services, my job is done!”

Eileen's son Evan will transition to public middle school in the fall, now equipped with many self-advocacy skills. He enjoys ear-reading with Learning Ally books, loves to play games, paint, cook, bake, and be a good friend to others. As Eileen puts it, "Evan is a child who learns differently, and as we say in our household, ‘Different is Good!’”

Suzanne and Roger

MEET SUZANNE

Suzanne graduated with a BS in Education from Virginia Tech. After a career in teaching she worked as VP of Human Resources for an international acquisitions company. While both careers were incredibly rewarding, Suzanne found her passion when one of her sons was identified with dyslexia. Growing up she had always been told she, too, was probably dyslexic.

“There wasn’t much information on how to educate dyslexic learners back then. I just learned how to get by,” Suzanne says. “I figured out how to learn without reading the textbooks, because I knew it would take me too long to read them.”

When one of her sons was formally identified with dyslexia, her journey to fully understand the profile began.

“I sought out every resource I could find. I trained on the Orton Gillingham method, I attended workshops, I scoured the Internet. The more I learned, the more I wanted to learn. And, the more I learned how to help my son, the more I reflected on my own struggles throughout my own education.”

In her continued search for information, Suzanne came across a glowing recommendation for a book titled The Dyslexia Empowerment Plan. The thought of reading a book cover to cover was painful, but something drew her to dive in anyway. “The book changed my life, and truly gave me the power and the tools to help navigate my son's dyslexia journey. It opened my eyes to the ways in which my son will have access to information throughout his education. It made me realize he would not have to just 'get by' as I did. It gave me something unexpected as well. It lifted the guilt I had always had about being a terrible eye-reader, and gave me permission to embrace ear-reading, something I had always before seen as a ‘cop-out.’”

Suzanne lives in Dallas, TX with her husband, Roger, and two sons, Jack (13) and Sam (11).

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

IEP

Excellent round-up from NCLD of resources for understanding and planning your child's IEP.

Hillside School Dyslexia Talk

Learn about the dyselxia empowerment framework and meet others like you at Headstrong Nation founder Ben Foss's upcoming talk in Boulder, Colorado. Ben will speaking on February 4th at 7pm at the Boulder Theater, courtesy of Hillside School. Tickets are $12 and all ages encouraged to attend. Get your ticket here!

Mayu is a middle-schooler, empowered dyslexic and one of many students who is realizing that their voice matters. Here he tells us why joining the dyselxia movement matters to him.

The first step to being empowered is owning your story. Don't forget to watch Headstrong Founder Ben Foss and Mayu discuss how to tell your story and connect others to your experience.

An IEP is an Individualized Education Plan, and when you're dyslexic, it can be the key to carving out your ideal pathway to learning while you are at school. Kids have the legal right to be at their own IEP but, more importantly, it gives them a chance to learn how to self-advocate. Watch Headstrong found Ben Foss & Mayu discuss why and what to know before you go. And don't forget to check out our other video about the key factors that will help you tell your dyslexia story.

Short. Truthful. Memorable. And polished. Learn how to tell you story and connect the world to your experience as a dyslexic.

Watch Ben, Amber, and Mayu talk discuss how to tell a good story and learn why Mayu started levitating...

Socrates, shame and how to be an empowered dyslexic. Listen to Headstrong Nation founder Ben Foss as he chats with Dr. Richard Selznick, author of The Shut-Down Learner: Helping Your Academically Discouraged Child" & "School Struggles.

Listen To Education Internet Radio Stations with The Coffee Klatch on BlogTalkRadio

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