Reflections on Where We’ve Been: A Mother and Son’s Journey with Dyslexia

Dylan and Nicola at the beach

October is Learning Disabilities/Dyslexia/Attention Deficit Hyperactivity Disorder (ADHD) Awareness Month.

Nicola—a mom of three and an advocate—and her son Dylan, a college sophomore, share what has made their journey unique in hopes of inspiring others. Below, they take turns asking questions and telling their story.


Nicola: I want to start by sharing what I love most about my son. He sees the world in many dimensions. He is inquisitive, caring and creative. Traveling with Dylan is one of my favorite things to do because he sees the nuances and details of the culture, architecture, food and music wherever we are. He expresses genuine joy when experiencing new things. He is very social and adventurous, and people seem to be drawn to him like a moth to a lightbulb. But what I’m most proud about is that after years of struggling with an undiagnosed learning difference, and battling self-doubt, he is a sweet and curious guy and he has found strategies to deal with his learning and attention issues.

Nicola: Do you remember what it felt like for you when you started school?

Dylan: I remember being asked in first grade to write down my name and to describe something I liked. I didn’t know how to write or spell, so I wrote how they do in cartoons with just a scribble in a bubble on the page because that’s what I thought writing was. I felt defeated—like I wasn’t normal, and I didn’t know why. I didn’t like going to school because I felt different, but I did like seeing my friends. Everything seemed easy for them, and it was frustrating that they seemed to understand what the teacher was asking but I didn’t. I kept waiting for something to click.

Dylan: When did you first really know that I was having trouble learning in school? Was it in reading or writing? 

Nicola: When you were young, we knew you had some trouble when it came to sensory things, and we worried you’d be overwhelmed in a big school. So we started you in a small, private school with your brother, hoping that a small community would make you feel secure and you could explore your ideas.

You were very creative and bright, but when it came to writing and reading you avoided the tasks; you had difficulty writing your name, yet your vocabulary was advanced.

When we asked the school why there was such a disparity and to help us figure out what was going on, we were told that you were “all boy” and you had a late birthday, but you would eventually catch up.

I knew there was something else going on, but I didn’t know what it was.

Dylan: At what point did you finally have hope and think it would get better?

Nicola: When you were in the private school, they wouldn’t do an evaluation, so we had to get a private evaluation.

The first big moment was when we finally had a name for what you were experiencing—dyslexia and executive functioning challenges. There was finally a reason why you were having such a hard time in school. However, there wasn’t a roadmap or any guidance from professionals on what kind of intervention services would best help you.

We spent years and a lot of resources finding tutors and trying to get you the services you needed.

It wasn’t until you entered middle schools—this time to our neighborhood public school—that things really turned around.

Finally, the school was proactive. They were quick to complete a full evaluation and get to the bottom of what was happening. They worked with us to put together an Individualized Education Program (IEP) and get the right interventions in place. It was then—once they were able to provide the specific type of reading intervention you needed—that you started to make real progress.

Dylan and his family

 

 

Nicola: What do you think your biggest accomplishment so far has been? And what are your goals?

Dylan: For me, it is being able to retain knowledge at a higher level and overcome my struggles with writing and reading.

It’s hard because dyslexia never goes away. I still have to work twice as hard as my peers. Ironically, it has made me a better student, and I have been on the honor roll since 10th grade.

Taking the SAT and ACT was difficult, but I was still accepted into many colleges including Loyola Marymount in Chicago, University of Colorado, Colorado State University, San Francisco University, Syracuse University, Oregon State University, Temple University  and San Diego State University. Receiving those letters of acceptance made me feel that they valued my learning style and I had something important to offer.

In the future, I want to have a successful career that I enjoy and allows me to be creative. I am interested in design, and I can see taking my ideas into the world of advertising or clothing design.

What is very important to me is that I am surrounded by friends and family and never stop learning.

Dylan: What has been the best part of this whole journey for you?

Nicola: Even though it was hard to see you struggle and it took a long time to figure out how to help, the best part is that you taught me how to be an advocate.

You taught me that in order to succeed, you have to build partnerships. You can’t accomplish things alone, and if you don’t speak up then nothing will change. I have also met a wonderful community of other parents and educators who are passionate about children and a career that I love and never imagined doing.

Dylan: If you could talk to every parent who’s dealing with some of the same worries, what would you tell them?

Nicola: First, I would tell every parent to trust their instincts; if you feel something isn’t right with your child’s education then reach out to your teacher or pediatrician.

I would add that parents should get involved and know their rights. It is every child’s civil right to an education and because of the Individuals with Disabilities Education Act (IDEA) and the Rehabilitation Act, there are protections for your child.

If your child struggles with dyslexia, make sure he receives the correct evidence-based intervention services. Question everything, but also listen and learn. You don’t have to be an expert, but you do need to be an educated consumer.

Get involved, connect with other parents and educators, and create a team to work on the situation together. You can’t and shouldn’t do this alone.

Nicola: What’s one thing you want to say to younger kids who, right now, are where you used to be?

Dylan: The world isn’t built for us, but we shouldn’t conform to regular learning styles. You have a unique brain and you can use that brain to solve problems and come up with solutions that other people couldn’t even conceive of. When school is difficult, it doesn’t mean you should give up. It means you should try twice as hard and figure out a way to change the system. You cannot change the past but you can shape your future.


About the authors:

Dylan Frost is a sophomore in college, majoring in product design and development. He is an avid soccer player, ceramic artist, and world traveler when there is time. He is active in his fraternity and looking for an internship this summer in product design.

Nicola Frost is the Regional Field Manager (Colorado) for National Center for Learning Disabilities (NCLD). Prior to becoming an advocate, she was an Emmy-award winning producer for the Food Network and directed documentaries. Her passion is in civil rights for all underserved communities. When she isn’t advocating she is biking the Rocky Mountains and kayaking with her family.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Dylan
Posted by
College sophomore majoring in product design and development
Nicola
Posted by
Mom of three. Regional Field Manager, National Center for Learning Disabilities (NCLD)

My Truth About Dyslexia―What I Wish for Other Kids With Dyslexia and Their Parents

Douglas Rawan II, a sixth-grader with dyslexia

Douglas Rawan II, a sixth-grader with dyslexia

Note: October is Learning Disabilities/Dyslexia/Attention Deficit Hyperactivity Disorder (ADHD) Awareness Month


My name is Douglas Rawan II. I am 11-years-old, live in Massachusetts, and I have a story about dyslexia.

It starts back in fourth grade when I began to feel different than my friends in school. Making jokes was the way I would cover up having no confidence in school. No one knew that inside I felt stupid. I remember one day when my mom asked me to do some reading and writing, and I threw pencils on the floor and my book. I remember my mom looked really sad. Inside I knew it would be too hard, but I didn’t know why. Since Kindergarten, my mom hired tutors to help with reading, but nothing changed at school. I also had a hard time focusing at school until one day I came home and told my mom that I asked the assistant principal for a standing desk. My parents didn’t even know what that was.

One day, my fourth grade teacher called my mom and said she thought I was really smart but that my work did not show it. She encouraged my parents to get me tested. I did get tested, and after that I thought things would get better for me but they didn’t. My parents finally told me the testing showed that I have ADHD [Attention Deficit Hyperactivity Disorder] and dyslexia and that I was two to three years behind in reading. I was so mad and asked them “WHY DIDN’T YOU TELL ME BEFORE?”

My parents didn’t know what to say to me and never even used the word dyslexia, as the school told them that they don’t use that word. Once I learned about dyslexia and all the famous people who had it I told my dad one day, “Dad, I hope that I have dyslexia as Albert Einstein had it!”

I am dyslexic, which means I have a problem with reading. Having dyslexia doesn’t mean you have low intelligence or are lazy, it just means that your brain works differently. When I read, I don’t understand what I am reading, and I get easily frustrated. When I see a long word, I think “OH NO,” because I think I can’t read the word. Sometimes I break up the word or skip it. Also, when I read it usually comes out slow. I forget what happens when I read. A lot of words are hard for me to read. This makes me feel stupid.

Luckily, I go to a new school, which helps kids like me. When I came to my new school for fifth grade, I had a gap between my reading and grade level. In my first year, I made more progress in my reading than I ever had before. Today I’m still a little below my grade level, but with the right instruction, I expect to close the gap all the way. The teachers help me understand how my brain works, which helps me to read.

I am now in sixth grade in small classes and can get the tools I need, which is helping me to focus and “unlock my brain.” The way they are teaching me actually builds new connections or neurons in my brain, which changes the way my brain works, helping me to communicate and read better. I don’t have to struggle alone and think about how stupid I feel any more.

Knowing that I just needed the right tools makes me wonder what happens to other kids who are dyslexic. Are there other parents like mine that need the help for their kids? I wish that kids like me who still struggle with reading and paying attention in school can get the help they need.

This is why I decided to write a letter last year to President Donald J. Trump asking him what he could do as our president to make sure no child like me was ever left behind. After I sent the letter, my mom started getting other calls from moms who also see their kids struggling.

At the beginning of sixth grade, I met a new student who was visiting my school named Michael who was having troubles just like me. My mom told his mom that I wrote a letter to President Trump, and she sent it to Michael’s mom. The day I first met Michael, he asked for my autograph. It made me feel like I just won the World Series. Michael had never met someone like me who had the same troubles as he did.

If I look back, I wish my mom didn’t have to cry so much. I wish that my school had tested me back in elementary school so that I did not struggle alone. I wish the word dyslexia was used all the time so all kids could know that some of the most successful people like Thomas Edison, Leonardo da Vinci, Steven Jobs, Sir Richard Branson, Walt Disney and JFK Jr. all had dyslexia.

If kids like me knew that dyslexia doesn’t have to do with intelligence but that we have a hard time understanding how sounds and letters go together, which makes it really, really hard to read. I wish kids knew that when a teacher read me a test I got a 107, but if I had to take a regular test and write the answers I would get a 67 or 57. When the teachers told my mom that I just had to study more, I wish the teacher knew that it wasn’t the material I didn’t know, it was the way that they were asking me to take the test.

I wish for so many things for the kids who struggle. I wish I could go back to my old school and talk to all the kids who feel stupid because of reading and tell them the truth about dyslexia. I wish for all of this and so much more for kids and for their moms and dads.

I hope that no kid spends another minute feeling stupid and sad.


Related Blog: OSERS Assistant Secretary Collett expressed his commitment to rethink special education in a blog post last month.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

A Teacher’s Perspective on Advancing Dyslexic Education

Note: October is Learning Disabilities/Dyslexia/Attention Deficit Hyperactivity Disorder (ADHD) Awareness Month.

Alison Pankowski

Alison Pankowski

Alison Pankowski currently trains teachers in her New Jersey district in the Wilson Reading System and is an International Dyslexia Association (IDA) Certified Dyslexia Therapist. She is the current Vice President of the New Jersey branch of the IDA.  Mrs. Pankowski was a contributing member to the New Jersey Dyslexia Handbook, released in September 2017.


As a dyslexia specialist in my school district, I build the knowledge base of my colleagues regarding early identification, structured literacy intervention and essential accommodations for students with dyslexia.

I explain, often, that:

  • “Yes, you can identify students at risk for dyslexia as early as five years old.”
  • “Yes, teachers should provide instruction in phonemic awareness in second grade to continue to build reading skills.”
  • “No, using audiobooks is not a crutch; it provides access to grade-level text for struggling readers and levels the playing field.”

While it is true that legislative efforts in my home state of New Jersey have helped to bring these types of conversations to the local school level, there is still much work to be done to ensure that our state dyslexia laws, enacted in 2013 and 2014, are implemented effectively.

There are still many persistent misconceptions about dyslexia, and much of the implementation gap exists because professionals cannot act upon what they do not know or understand.

The truth is higher education often does not include coursework on dyslexia in teacher preparation programs, so local education agencies must either figure out how to build capacity or wait until guidance is provided.

But where would this guidance come from?

In New Jersey, I was invited to join a group of individuals tasked with creating dyslexia guidance. This group consisted of practitioners with expert knowledge in the field of dyslexia, including learning disabilities teacher consultants, speech and language pathologists, psychologists, higher education professors, assistive technology experts, parents and N.J. Department of Education representatives.

New Jersey Dyslexia Handbook

New Jersey Dyslexia Handbook

We worked together for more than 19 months to create the “New Jersey Dyslexia Handbook” with the intent to:

  • Build an understanding of dyslexia and related difficulties with written language;
  • Demonstrate how to identify and remediate students with dyslexia and other reading difficulties; and
  • Inform both educators and families in best practices to support students with dyslexia and other reading difficulties.

We met monthly to discuss how to best provide this understanding and specialized knowledge without overwhelming or alienating educators and families.

Our meetings involved thoughtful, often passionate conversations about what we had experienced or had heard from others around the state; both positive and negative, regarding how schools had chosen to implement the laws passed by the state.

Usually these discussions resulted in written revisions to chapters drafted on early screening, intervention, assessment, accommodations and assistive technology. These discussions then led to more discussions and more revisions!

As committee members with experience in the field, we met with educators and families across the state throughout the process to learn more about what guidance they were seeking and to assure them that it would be coming soon. We worked diligently to craft a resource that would provide best practices to meet the needs of their struggling readers.

The N.J. Department of Education released “The New Jersey Dyslexia Handbook: A Guide to Early Literacy Development & Reading Struggles” Sept. 25, 2017—just in time for Dyslexia Awareness Month in October.

My hope is that this handbook will be a giant step forward in closing the gap between the research on dyslexia and the implementation of best practices in the school and classroom.


Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Alison Pankowski
Posted by
Alison Pankowski is an International Dyslexia Association (IDA) Certified Dyslexia Therapist and is the current Vice President of the New Jersey branch of the IDA.

LD/ADHD Proud to Be:
Eye to Eye’s Different Thinkers

Eye to Eye's "Different Thinkers" celebrating LS/ADHD Awareness Month

As the month of October and Learning Disabilities / Attention Deficit Hyperactivity Disorder (LD / ADHD) Awareness Month draws to a close, I have been thinking a lot about how our teams here at OSERS are strengthened by people who have different skills, different knowledge, and different approaches to problems. We don’t all think alike which brings strength to our work. I’d like to introduce some amazing students with LD / ADHD who think differently and bring strength to our society.

Recently, David Flink, Founder and Chief Empowerment Officer of Eye to Eye, authored a guest blog on the OSERS blog spot. In his post, David emphasized the importance that awareness plays in breaking stigma and building understanding around diverse learning needs. David frames learning disabilities and LD / ADHD awareness in the following terms, “We like to think, ‘It’s not a learning disability, it’s this ability to think differently.’” In his post, David talked about his own 5th grade reading struggles. Over the years, stories from his teachers and others who had LD and ADHD helped him succeed. He knew youth with learning disabilities needed hope, and they needed strategies for success. They needed mentors.

David founded Eye to Eye as a national mentoring organization run by people with LD / ADHD for people with LD / ADHD. The organization recently launched a National Share-Ability Campaign, which highlights the authentic experiences of students with LD / ADHD. If you’ve been in Times Square lately, you might have seen a giant screen “spectacular” sharing a story. Or maybe you know a student who has had a quiet, personal, one-on-one conversation: many have happened in classrooms and homes across the country.

As part of their Share-Ability Campaign, Eye to Eye asked their college-aged mentors across the country, “What would you like to share about your abilities as a different thinker?” OSERS features those kids’ inspirational answers here—positive messages by self-advocates who wanted to help others by telling their own story.

We welcome you to read their experiences and invite you to share your own.

 

 


Chelsea Bennett, Knox CollegeChelsea Bennett, Knox College

As a different thinker, I have been able to learn more about myself. Not only have I learned how to navigate my ADHD and explore how I learn best, I have also been able to learn great things about myself. My ADHD may be a challenge, but it has also taught me to enjoy the quirky, hyper, fun-loving person that I am because that is what makes me unique!


Katy Demko, University of PittsburghKaty Demko, University of Pittsburgh

Some people think my ADHD should hold me back, but I think it pushes me even more! It took me a while to figure out how I learn and it was a lot of trial and error. But I have come to realize that it is not a learning disability—I just learn differently.


Josh Dishman, Radford UniversityJosh Dishman, Radford University

My disabilities actually give me strength to work even harder towards a goal. Growing up, I was labeled as the wild, energetic kid who could never pay attention in class, which led many to believe that I was an idiot. As I grew up, I learned that having ADHD didn’t make me stupid, it just meant I had to work a little harder. I may have not been attentive enough to read a book, but if I listened to the book on audio, I was able to lead the class discussion on the novel.


Chris Gorman, Hobart and William Smith CollegesChris Gorman, Hobart and William Smith Colleges

I think that having ADHD allows me to approach problems differently. While most people would look to reach point D by going from A to B to C and then D, I always bounce around the problem. This lets me approach problems from a different angle and look at something in a totally different light than most people would.


Caroline Lee, Boston CollegeCaroline Lee, Boston College

As a different thinker, I can get lost on the way to class, forget where I put my textbook, and mix up my 10 AM class with my 12 PM class. But I still know that I have a valuable mind that can learn and approach things in interesting and meaningful ways.


Luz Madrigal, UC IrvineLuz Madrigal, UC Irvine

My ADHD brain is like a computer with a lot of different windows open all at once, and they are all functioning at the same time. I am a bit slow at learning new things just because I pay attention to too many details, but once I learn the task at hand, I tend to be above average in speed at that same job that took me longer to learn. I make sure I slowly learn everything, and once I do, WAM…I am extra efficient because I am a great multi-tasker! ADHD is pretty cool if you ask me.


Brianna Malin, University of Illinois at Urbana-ChampaignBrianna Malin, University of Illinois at Urbana-Champaign

I am a different thinker and I am very proud of it. Living with an LD and ADHD has helped me gain confidence and motivation to succeed in anything I do. I have determination, drive, and dedication to always do my best to reach my goals. This has also helped me to be resilient in the face of any obstacle. I am very grateful to be different and to think different because it makes me, me!


Georgia Mavrogeorgis, SUNY BuffaloGeorgia Mavrogeorgis, SUNY Buffalo

My learning disabilities provide me with the gift of being able to understand and see the world from a different perspective.
I’m more open-minded and accepting of individuals and their differences.


Becca O’Hea, ECUBecca O’Hea, East Carolina University

Having dyslexia has given me immense patience in having to spend extra hours completing reading assignments, and taught me to be a strong listener to compensate for being a slow reader and writer. I make it a point to tell others about my difference and how it has help me in furthering my career as a student and as a future school psychologist.


Brandon Odenheimer, University of DenverBrandon Odenheimer, University of Denver

I have been classified as LD and ADHD since 1st grade. Now I’m in my senior year of college, and I have been able to use my way of learning to succeed in my studies all the way. The ability to share my experiences with others is very rewarding.


Arthi Selvan, Temple UniversityArthi Selvan, Temple University

I’ve struggled a lot with being a different thinker, especially as a science major. To me, being a STEM major means you must be the type A personality: organized, efficient, a linear thinker, competitive. However, my learning difference benefits me. I have the ability to see and approach problems differently than most STEM majors do. I sometimes feel like I have a secret super power because of my ability to think differently.


Sam Solomon, University of WyomingSam Solomon, University of Wyoming

Nobody ever told me bluntly, that I was doing it “wrong.” But after a lifetime of little corrections and criticisms about how you think and live, you start to hear it. It takes a lot of courage, a lot of self-love to truthfully tell yourself that your habits and flaws and quirks are wonderful. It isn’t about fixing yourself. You have to form an alliance with your learning style.

 


Learn More about Eye to Eye

 Eye to Eye on Social Media

Join Eye to Eye’s Email List:

  • Find us on our site or text LearnOn to 22828 (regular mobile charges apply.)

Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

Raising Awareness on Specific Learning Disabilities

This blog was cross posted from HOMEROOM, the official ED.gov Blog, and  originally appeared on Medium.


Last year I learned about Jade, a dynamic 8th grader who struggled to learn to read when she was in elementary school.

In recalling her challenges, Jade described trouble recognizing letters and difficulty linking them together to form sounds. She just couldn’t read. The worst feeling in the world, Jade said, was starting to believe the names her classmates called her.

For a long time Jade kept her struggle to herself, feeling alone, and like she had to find her own way to deal and cope with this challenge. Fortunately, Jade’s family and teachers stepped in to help her get special education services. These services provided her with individualized strategies to help her read—strategies that she still uses today as she advances through middle school and sets her sights on high school and beyond.

We know that Jade is not alone. Approximately 2.5 million students receiving special education services in schools have learning disabilities, making it the largest disability population in our country. And, while research demonstrates that learners with disabilities who struggle in reading or math can most certainly succeed at rigorous, grade-level coursework with high-quality instruction and appropriate services and accommodations, too many young people don’t get the support they need to succeed. Sadly, and unnecessarily, students with learning disabilities lag far behind their peers in a host of academic indicators.

Too often, children with learning and attention issues are defined by their limitations rather than their strengths. Jade’s story shows us what is possible when educators and families work together to build on the strengths of a child while identifying and addressing their challenges.

By raising awareness of the needs of children with learning and attention issues, we can all make certain that no child falls through the cracks.

That’s why I am proud to highlight October as the month of awareness for Learning Disabilities, Dyslexia, and Attention Deficit Hyperactivity Disorder (ADHD). By raising awareness of the needs of children with learning and attention issues, we can all make certain that no child falls through the cracks.

Today, the Office of Special Education and Rehabilitative Services (OSERS) released guidance to state and local educational agencies. This guidance clarifies that students with specific learning disabilities—such as dyslexia, dyscalculia, and dysgraphia—have unique educational needs. It further clarifies that there is nothing in the federal Individuals with Disabilities Education Act (IDEA) that would prohibit the use of the terms dyslexia, dyscalculia, and dysgraphia in a student’s evaluation, determination of eligibility for special education and related services, or in developing the student’s individualized education program (IEP).

It is our hope that this guidance will help families and educators work together on behalf of children. We acknowledge that there could be situations in which the child’s parents and the team of qualified professionals responsible for determining whether the child has a specific learning disability would find it helpful to include information about the specific condition (e.g., dyslexia, dyscalculia, or dysgraphia) in documenting how that condition relates to the child’s eligibility determination. Additionally, there could be situations where an IEP team could determine that personnel responsible for IEP implementation would need to know about the condition underlying the child’s disability (e.g., that a child has a weakness in decoding skills as a result of the child’s dyslexia).

Specifically, this guidance:

  • Clarifies that the list of conditions in the definition of “specific learning disability,” which includes dyslexia, is not an exhaustive list of conditions which may qualify a child as a student with a learning disability;
  • Reminds States of the importance of addressing the unique educational needs of children with specific learning disabilities resulting from dyslexia, dyscalculia, and dysgraphia during IEP Team meetings and other meetings with parents under IDEA;
  • Encourages States to review their policies, procedures, and practices to ensure that they do not prohibit the use of the terms dyslexia, dyscalculia, and dysgraphia in evaluations, eligibility, and IEP documents.

This guidance can be found by visiting the Department of Education’s webpage.

The Department is committed to ensuring students with specific learning disabilities—such as dyslexia, dyscalculia, and dysgraphia—receive a high-quality education. The month of October is as an opportunity to raise awareness about these critical issues. But we all must remember that helping students, like Jade, to thrive happens not just today, but every day.

Michael Yudin, Assistant Secretary for Special Education and Rehabilitative Services at the U.S. Department of Education.
Posted by
Assistant Secretary for Special Education and Rehabilitative Services at the U.S. Department of Education.

One Act of Sharing, A World of Difference:
When My Teacher Told Me She Had Dyslexia


An OSERS guest blog by David Flink
David Flink

David Flink is founder and Chief Empowerment Officer of Eye to Eye and author of Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities


October is Learning Disabilities (LD) Awareness Month, a time when the nation turns its attention to the one in five students who learn differently because they have dyslexia, Attention Deficit Hyperactivity Disorder (ADHD) or other learning and/or attention issues. Eye to Eye honors the LD/ADHD community this month and throughout the year.

As Education Secretary Arne Duncan said recently, “This is a time to understand how these disabilities impact students and their families, to reflect on the significant achievements that these students have made, and to renew our commitment to creating a stronger future for them.”

What does awareness actually mean? What would real awareness look like in our schools, homes, and workplaces? How can we unlock the potential of different learners and create a world where all learners can thrive?

Eye to Eye is the only national mentoring movement that pairs kids who have learning disabilities and ADHD with college and high school mentors who have been similarly labeled. We are an organization for people with LD/ADHD by people with LD/ADHD. And we believe that one of the most powerful things you can do is share your own LD/ADHD story or the story of someone you love.

Owning your LD, then speaking it loud and proud, is the first step in breaking the stigma. When you share your truth, you help a kid feel seen. You tell them they’re not alone. They start to see their future and their potential in a whole new way.

That’s why Eye to Eye mentors work with kids in middle school, telling them, “I’ve been where you are. I made it, you will, too.” It’s why our Eye to Eye Diplomats, who range from successful students to established professionals, speak around the country, saying, “I am what LD/ADHD looks and sounds like and here is how I found success.

I started Eye to Eye in 1998 because that didn’t happen when I was kid. I was a 5th grader who couldn’t read. No matter how much my parents supported me, I had no role models with LD/ADHD. If national statistics hold true, one in five educators has a learning difference or a family member who does. But that would have never occurred to me, I thought I was alone.

It was only after I graduated from Brown University and finished my graduate work in Dis/Ability Studies at Columbia that one of my teachers called to say, “I am dyslexic.” That was revolutionary to me, that one act of sharing.

Imagine that happening in homes and classrooms across the country. What it would mean to kids to hear that the adults in their lives face the same challenges they do.

It would break the stigma. It would create a safe space where a kid can say, “I really think I could learn better if I just had this.” Allowing kids to listen instead of read, learning with their ears instead of their eyes. Or letting kids with attention issues have breaks. Kids can get these accommodations now, but often the stigma of having an LD/ADHD can prevent them from seeking help or access the accommodations that are their legal rights. We should make sure no kid feels ashamed to ask for what they need—and what better way to not feel ashamed than to know you’re talking to someone who really gets it?

When we don’t share, when we keep silent, we lose kids. Kids with dyslexia and other learning disabilities drop out of high school at more than double the rate of students in the general population. Individuals with learning disabilities appear in the U.S. prison population at four times the rate they are found in the general public.

It’s not a small number of kids. Learning disabilities affect as many as 20% of our students. According to the Department of Education, 2.5 million kids have been identified with specific learning disabilities; as many as 6 million with ADHD. Still more have not been identified—and so many don’t get the attention they need. Unless we help them, the national cost in human potential and hard dollars will be tremendous.

That’s one of the reasons I’m so passionate about the work we do at Eye to Eye. We encourage everyone to share his or her story. We know that in some environments, revealing takes real courage. But sharing creates a connection. Connection creates community. And a community sparks culture change and a movement.

So, this LD Awareness Month, share your story or the story of someone you love. I started by talking with Secretary Duncan. One month before he made his statement about learning disabilities, two Eye to Eye mentors from the University of Illinois, represented the LD/ADHD community met with Secretary Duncan on his Back-to-School Bus Tour. They told him about the challenges they and the LD/ADHD community faced and what they hoped to do in their lives. They shared. He listened—and committed to change.


Learn More

Eye to Eye

David Flink

Eye to Eye on Social Media

Facebook

Instagram

Twitter

YouTube

Pinterest


Parent Engagement: We’re Two Moms Working Together to Make Positive Change for Students with Learning Disabilities


It might seem surprising for two moms from two different states, thousands of miles apart to have a deep connection, especially when we’ve hardly even spent time in the same room together. But in a powerful way we’ve bonded, like so many other engaged parents across the country, due to our children’s dyslexia and other learning disabilities.

Our connection is based on a shared truth—the need to feel like we’re part of a community and the desire to make a difference for many children just like ours.

We’ve also learned that we can give hope to others when we tell our stories:

Lyn Pollard – Parent Advocacy and Engagement Manager, NCLD and Understood
Lisa’s Story:

My 8th-grade daughter was not identified with dyslexia until the end of 3rd grade, after struggling in school for years. As I sought help for her at school, I was often told that I needed to accept her status as a flailing student. But my instincts told me not to. I somehow knew my child could do more.

It was not until we finally received an identification of dyslexia, dysgraphia and Attention Deficit Hyperactivity Disorder (ADHD), and got appropriate accommodations and private dyslexia tutoring in place that the fog literally lifted. One accommodation we made for my daughter who has difficulty spelling, was an adjustment to her assigned spelling list to include the words she was working on in her reading intervention. Suddenly she became a different child. She didn’t dread going to school anymore. Her headaches stopped, her anxiety lessoned. She was actually smiling and laughing again. Today she is in the honors reading class and on the road to her dream career—a doctor. She knows she has a bright future.

I was educated as a teacher and spent many years working in the classroom. I thought that I knew how to help a struggling child learn to read. But I quickly discovered as my daughter spiraled downward that I was not equipped to help her. My daughter needed a teacher who could teach her to read the way she learns. Now, I work with many parents as part of Decoding Dyslexia, a parent-led grassroots movement. We collaborate with partners in Maryland and D.C. to advance teacher training and raise learning disability (LD) awareness. Our goal is to ensure that children like my daughter don’t fall into the gap and that educators can have all the tools they need to help students like my daughter.

Lisa Blottenberger – Parent, Decoding Dyslexia MD
Lyn’s Story:

I didn’t know just how many children were affected by dyslexia, dysgraphia, ADHD and other disabilities until my own kids were identified. It was when my two children first began facing challenges and obstacles at their Texas public school that I became a champion for my children and the many others with learning and attention issues. By educating myself through online resources and connecting with parents of children who have learning disabilities, like Lisa and many others, I learned how to become an effective and collaborative advocate.

I also learned the value of telling our story. I began to write, tweet and speak about not only my family’s negative experiences, but—more importantly—the triumphs and victories as we saw our local school district engage with parents, listen to our concerns and begin to change.

Positive change is contagious. And talking about it is the catalyst. Every day in my role with the National Center for Learning Disabilities (NCLD) I get to engage with parents who are change-makers alongside educators, researchers and policy makers in their community. I get to help parents tell their stories and highlight the collaborative work they are doing to improve teacher training, implementation of federal and state laws and to keep the bar high for students with LD.

Best of all, I get to connect parents to national-level work and policy efforts that are helping to educate and inform everyone about what children like ours need to succeed.

Engaged parents are a key catalyst within our public schools to help educate, create awareness and raise expectations for kids with learning disabilities. As two moms who have connected through our children’s shared experiences, we encourage you to get involved, too.

We encourage you to get involved! Here are some resources to help you get started on collaborative change work in your child’s classroom and beyond.

  • National Center for Learning Disabilities (NCLD)
    Working to create a society in which every individual possesses the academic, social and emotional skills needed to succeed in school, at work and in life.
  • Understood
    15 nonprofit organizations that have joined forces to support parents of the one in five children with learning and attention issues throughout their journey.
  • Decoding Dyslexia
    A network of parent-led grassroots movements across the country concerned with the limited access to educational interventions for dyslexia within the public education system.
  • Parent Camp USA
    A hybrid “un-conference” opportunity for parents and teachers to come together and level the playing field, putting all stakeholders in a circle for actual, face-to-face discussion about what is best for kids. At the U.S. Department of Education in Washington, D.C. on 10|26|2015.
  • Center for Parent Information and Resources (CPIR)
    A central resource of information and products to the community of Parent Training Information (PTI) Centers and the Community Parent Resource Centers (CPRCs), so that they can focus their efforts on serving families of children with disabilities.
Lisa Blottenberger – Parent, Decoding Dyslexia-MD
Posted by
Parent, Decoding Dyslexia-MD
Lyn Pollard – Parent Advocacy and Engagement Manager-NCLD and Understood
Posted by
Parent Advocacy and Engagement Manager-NCLD and Understood

Learning Disabilities Awareness Month: Beyond the Dys in Dyslexia

Guest Author: McKenzie EricksonMarketing Coordinator at Benetech


Dyslexia. It’s a word I’ve heard since the third grade. It was the explanation for why I couldn’t read, why I had to cheat on my weekly spelling tests, and why I felt different. I’ve since come to realize there is more to dyslexia than its disadvantages.

When I was in school, I put a significant amount of energy into keeping my dyslexia a secret. I didn’t want anyone to know that I was in special education, or that I had a tutor for nine years, or that my parents read my advanced placement (AP) textbooks to me. I worked hard to make sure I had the perfect grades and the perfect resume to get into the perfect college. I overcompensated by working three times as hard as my peers. I was student body president in my senior year while being involved in multiple extra curricular activities. I needed to make sure people saw me as smart and competent.

After graduating high school and taking some time to reflect on what I really needed, I made the decision to attend Landmark College. It was there, among hundreds of other students with learning disabilities and attention issues that I began to define who I am. I found helpful resources like the National Center for Learning Disabilities and learned more about disability laws and my right to accommodations. I developed skills to advocate for what I need to be successful. Learning differently is what all students at Landmark College have in common. It was time to discover who I am beyond my dyslexia.

My associates’ degree at Landmark College prepared me to attend the Minneapolis College of Art and Design. I began to focus on knowing and understanding exactly what I have to offer and what energizes me. I opened myself to the possibility that my strengths were not in spite of my dyslexia, but because of it. I honed my skills by studying branding, creative and critical thinking, and human centered design. As a capstone I interned at Benetech.

I just celebrated my three-year anniversary at Benetech. I’m proud to put my design and marketing degree to use contributing to Bookshare, a global literacy initiative of Benetech. Bookshare is an online library of over 350,000 accessible ebooks for people with print disabilities like dyslexia. By continuing to develop my strengths and identifying ways to compensate for my challenges I’m crafting my ideal career.

This LD Awareness Month, I encourage all teachers to consider which of their students might have dyslexia. Notice how bright they are and how hard they are working. Help them to identify and celebrate their interests and strengths. Understand that these students are constantly confronting their major weaknesses—reading and writing. And thank you in advance for seeking out the necessary professional development to provide effective evidence-based interventions.

For parents of children who are struggling with dyslexia or other learning and attention issues, I want you to know that there are resources and communities of support available to you. Whether in your local community or on Web sites like Understood.org, there are experts who can provide information to help you make decisions and navigate this journey, and there other parents who understand the challenges you face and will share their stories.

I urge all students with learning disabilities to pursue activities that you enjoy. Believe in your ability to learn. Use your voice to increase awareness and understanding of the whole of dyslexia. Help to shift the paradigm from disadvantages to advantages. Find your strength and focus on making it into your super-power.

Author’s Note:  In case you’re wondering… yes, it took me more time than you can imagine to write this blog post. But some things are just worth it!