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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).  

Big thanks to Jamie Martin of the Kildonan School for his recommendations! Watch his webinar below about the best iPad apps for dyslexics!

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

Headstrong Founder Ben Foss recently spoke at a TEDx talk in Sonoma about shame and what we can do to put it down. Watch and learn how to end isolation, use your strengths, and help others. 

Great post from The School of Dyslexia by our friend Sharon Plante, Director of Technology, Eagle Hill-Southport, Southport, CT:

Sharon Plante

Dyslexia is often referred to as the hidden disability (I use the term dyslexia to include all forms of language based learning disabilities). Difficulties with mobility, vision, and hearing, along with other disabilities, are often more obvious to the world, especially to those of us in education.  Accommodations for these children are imperative to their functioning in the classroom and in their learning.  For dyslexic students, the same accommodations are often given repeatedly, with the hope of improved academic performance, but those accommodations are often not considered imperative for their learning.

This week, I listened to a student talk about his path to learning, leading to his enrollment at our school.  This boy is a sixth grader who was identified as being dyslexic in the third grade.  Despite that identification, year after year, teachers gave him the traditional work that required a trip to the resource room for him to even attempt it.  He talks of spending days in the resource room just playing on the computer because he knew he had to be in school, and he found his time in the traditional classroom to be a waste of time.  Now that he is in an environment that understands his learning needs, he is doing his work, he is making gains, and he is showing his strength as a learner.  He didn't want to hide from learning; he just needed someone to understand his less-than-visible disability. 

Continue reading post here...

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

"Alex" is a finalist in the White House Student Film Festival. Good luck Alex & Mitch, and well done Westmark for helping LD students shine.

From Mitch:

For this contest, I wanted to take a different approach to the concept by making a documentary style video about my little brother, Alex. Alex goes to a school that provides tablets to the students, as a mean of education that differs from normal curriculum. 

You are 9 years old. It’s Monday morning. You walk into class and see a tall man with glasses instead of your teacher, Mrs. Taylor. You see a fat folder of paper handouts sitting on his desk. 

You take a deep breath, march to the front of the room, and introduce yourself to the new sub. You pull a worn ID card from your pocket that tells him you are dyslexic and lists, on the back, the key components of your IEP. 

The sub pauses for a moment and takes it in. Understanding, he nods and hands you back the card, before going to his desk and emailing you a PDF of the handout.

You take a seat, open your laptop and get ready to ear-read along with the rest of the class. 

Dyslexia ID card
 
Because of the work of Dr. John Frauenheim, this kind of stuff actually happens. 
 
Dr. Frauenheim caught our eye when we learned about an unusual support strategy offered by the Center where he works: personalized dyslexia identification cards that help students a way to explain their dyslexic identity and self-advocate for what they need in class. Before dyslexics are able to confidently tell their story, in their own words, without props, we can imagine how a signifier like this could be extremely helpful, especially in the early years. 
 
Dr. John Frauenheim is the Associate Director at the Center for Human Development at Beaumont Children's Hospital in Berkley, Michigan. There he provides multidisciplinary assessments and treatments/strategies to the dyslexic and LD community.
 
We were curious about what other ideas and insights Dr. Frauenheim might have for us so we sent him a list of questions about his experiences. 
 
Dr. Frauenheim answered, naturally, from a medical perspective. While this perspective differs slightly in how it talks about dyslexia, the shared emphasis on community and self-advocacy as key stepping stones to being an empowered dyslexic is very encouraging. Go team.
 
Read on for highlights from our interview. Thank you Dr. Frauenheim!
 
Note: All links and bolded text have been added by Headstrong Nation. :)
 


Headstrong Nation: You've mentioned that you selectively give individuals with dyslexia a card that identifies them as experiencing difficulty with reading and spelling. Tell us the history behind the card. 
 
Dr. John Frauenheim: As one simple step toward self-assertiveness and empowerment we give dyslexic individuals an ID card that identifies them as experiencing dyslexia and looks rather official, i.e., hospital title and signed by a licensed psychologist. We do this for elementary school aged children as well as adolescents and young adults. 
 
The use of the card can be very helpful at all of these levels. Elementary students, for example, will at times write the elements of their IEP on the back of the card to be able to present to teachers when they make a request for accommodations.  
 
It can be very helpful, for example, when a substitute teacher comes in and wants students to individually read aloud in class. The dyslexic student can produce their card quickly and ask to be excused from that activity. The card can also be helpful for college students, for example, when they have a need to discuss certain issues or accommodations with an instructor. The card breaks the ice and allows for meaningful discussion. 
 
We have had others where a formal statement given had to be signed, i.e., in the police department, and they are uncomfortable with what the printed version of their comments state. Examples are endless. The availability of an ID card for dyslexic individuals was something we saw a need for 25 years ago. The card has been in use since that time and, to my knowledge, we are the only facility that utilizes this particular support strategy.
 
HN: What kind of changes have you seen in the medical community around dyslexia and other specific learning disabilities?
 
JF: Cases of dyslexia have been well-documented for over 100 years. Research has steadily increased to a level where we now have a much greater understanding of dyslexia and how it impacts life. This has led to a growing awareness in the medical community.  
 
Schools, however, have been slow to recognize dyslexia, feeling that it is some type of "medical condition." 
 
On the plus side, programs for children with learning differences have improved over the years. Most recently, at least here in Michigan, school districts are approaching the concept of learning differences within the context of a "response to intervention" (RTI) approach, which implies that a young child in elementary school, where problems are noted, should have appropriate resource strategies available to them to address those concerns. 
 
The importance of understanding dyslexia includes the fact that it is more than simply an eye-reading problem. We frequently note, for example, an extension into the area of math where dyslexic individuals find it difficult to memorize basic math facts, such as the times tables, that can impact functioning. 
 
There is a frequent finding associated with immediate auditory memory/working memory that may affect the consistency with which one retains directions, multitasking, etc.  More subtle language issues have also been described such as naming, word finding, and language organization, or the expression of ideas in an organized fashion.  Spelling, of course, is affected with further impact on written expression.
 
HN: How important is early identification?
 
JF: Early identification, of course, is important. It may be difficult to specifically identify a very young person as experiencing dyslexia; however, risk factors should be closely examined and where there is some difficulty experienced, then appropriate intervention should be provided.  
 
Dyslexia does not go away. It does, however, present on a continuum that may range from severe to least severe. At the severe end of the continuum, we see adults whose eye-reading skills have not progressed above an elementary level. These individuals are often ignored in the literature on learning differences/dyslexia.
 
Specific treatment for dyslexic individuals must be approached along at least four avenues:
 
1. Specialized instruction in language arts areas should be provided utilizing appropriate and well-documented evidence-based strategies such as the Orton-Gillingham Method.
 
2. We must introduce assistive technologies* very early in a child's education. As we work at improving eye-reading skills, we also provide ways to work around the interference of skill weaknesses. 
 
Textbooks, for example, should be made available through some type of audio format to assist with reading fluency and, subsequently, comprehension (e.g. Learning Ally, Bookshare). The use of a computer with word processing becomes important with regard to written expressive language activities. Other computer programs that are available include those that allow for dictation as well as provide reading assistance. Another example would be the Intel Reader.
 
*Check out Headstrong Nation's Tools page page for a list of current assistive technologies. 
 
3. We must review curriculum requirements as they might impact the dyslexic individual.  The learning of a foreign language, for example, in the presence of dyslexia tends to be quite difficult. The frequent recommendation is to waive such requirements. Some school districts will allow sign language to replace a formal language requirement. The waiving of a foreign language can be accomplished even at the college level in many instances. Other accommodations, such as increased time for testing becomes important. Oral testing should be allowed as indicated, etc.
 
4. Universally, young dyslexic individuals entertain the notion of being "dumb." They compare themselves with their peers and/or siblings and realize that they are not achieving at the same level, which produces concern. They worry that they are not meeting the expectations of significant others. Early efforts at assisting in understanding dyslexia and how it impacts functioning are very important.  
 
Dyslexic individuals need to become "experts" and learn how to appropriately assert themselves in terms of the accommodations that will be meaningful for them. Empowerment starts at an early age. It is extremely important to assure that success experiences occur both academically and non-academically.
 
HN: We believe that finding community and being honest about one's dyslexia is the key to becoming empowered. How do you support individuals that are struggling with coming to terms with their dyslexia?
 
JF: Recognizing that one has dyslexia is the key to becoming empowered.  
 
In our setting we provide "demystification" sessions for those with a diagnosis of dyslexia and at times ongoing counseling to assist in looking at compensatory strategies and to address other issues related to self-concept. 
 
It also becomes very important for "significant others" to have a full understanding of dyslexia. This not only includes parents, but also grandparents and others in the community where dyslexia may impact functioning, i.e., religious lessons, etc. At times, we offer small group counseling sessions for students with dyslexia to be able to learn from one another strategies that have been helpful. 
 
Ongoing peer mentoring should be available. In the past we have had group counseling sessions for dyslexic adults. This has been extremely helpful as, in adulthood, dyslexics find themselves generally to be quite isolated, not knowing others, etc., and feeling that they lack any "power" to change life circumstances. 
 
The areas of self-concept and empowerment must be addressed on an ongoing basis.
 
Dr. John Frauenheim
Dr. John Frauenheim
Associate Director, Center for Human Development at Beaumont Children's Hospital, Berkley, MI 
 

IEP

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

 

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