dyslexia

NOTE: This is the second of two personals stories from our guest blogger "Anonymous", who describes individual academic and career struggles as a person with LD, and who has a desire to be part of a supportive community of other dyslexic/LD adults.

photo of cloud with text:  A career that wasn't - Photo by Eileen Tait-Acker

Photo by Eileen Tait-Acker


Everyone has issues in their life. One of my acquaintances had an eating disorder. Another friend struggles underneath the surface with the fact that she is adopted. One of mine as an adult has been my career. Or lack thereof.

When we go off to college we have a picture in our minds of the next twenty years of our careers. We spend our college years picking a major, having fun, learning everything from how to write a paper to how to live on our own for the first time. (This, of course is what it looks like for those with the “typical” college experience, which mine wasn’t). No matter what you major in, you graduate with a ‘here’s how it’s going to go’ plan.

I’ll get my first job (maybe I don’t even expect it to pay a lot of money); work my butt off, stay for a few years and move on to the next. The positions will get better with each new job, I’ll make more money with each new job, I’ll move up in the world one job at a time. Perhaps I even expect a few bumps along the way. I don’t expect all will go perfectly as planned but there will be progress with each job and as the years go by. Sound familiar?

This is the way it’s supposed to work right? But what does it look like when it doesn’t. This has been my life.

First and foremost I feel like a failure. Second I blame myself. What went wrong?

Is it the Learning Disability I didn’t know about or understand until I was in my twenties? Over the years I have wondered often how much this particular issue has influenced my long struggle in jobs or with building a solid career for myself. All the LD organizations promote and champion people who ‘struggle though, overcome and become successful after a childhood discovery of a Learning Disability but nobody talks about the people who don’t. Those who drop out of high school or college. Those who get into trouble and wreck their lives in some way; drugs, alcohol, prison. Or even those who do everything right by graduating high school and college and still go through life in low paying, dead end jobs because they can’t get to that next step.

Many LD children and adults don’t fit the “normal” success model; It seems we (if you’ll allow me to speak for others) have enough pressure from the education system, colleges and employers to fit in, to get good test scores, to interview, get and do well in a career, to be the success I may not be, that I don’t want to feel it also coming from LD organizations when I am only shown people who do reach the “normal” success model.

Those of us with a Learning Disability are a varied group; some more successful than others, tell me that, show me examples of those people. I am supposed to feel inspired, hopeful, with an ‘if they can do it I can too’ attitude seeing all those success stories and hearing advice from these groups. Instead they remind me of my failure. The irony is that I have been invited twice to speak at a Learning Disabilities conference; twice I have had to back out because I was unemployed and broke at the time of each.

It’s possible my job difficulties don’t come from my LD. Is it what I majored in in college instead or where I went to college or that I no longer want to do that career I studied (although that doesn’t account for all the years before I felt that way)? Is it a terrible economy and job market that has lasted for years (also doesn’t account for the years before that)? Is it a job application process that is inefficient, ineffective, automated and inhuman among other things (we call it an internet black hole for a reason)? Is it just dumb luck (of which I’ve never had any)? Is it a mix of all of the above?

What I can tell you is it has not been for lack of ambition, lack of trying, lack of desire to have a good job or laziness. I have worked of course in the twenty years since I left high school. Many low paying jobs. Many part time jobs. Most not what I wanted. A couple full time positions that finally gave me enough money to live on but which I derived no satisfaction from my work. Lots of rejections. Or just as bad hearing nothing at all after an interview. These twenty years also include periodic unemployment for several years at a time. These times are much worse than the jobs I didn’t like.

The effects of this type of career path range from the practical; will I have enough money to live on?, How bad does it look on my resume to have one low paying, continual low level responsibility job after another? How bad do those years of unemployment look on my resume?, What are the chances of getting what is effectively an entry to mid-level job at my age, to the psychological; constant stress and worry, boredom beyond what school ever was, a huge hit to your self-confidence, constant doubt about your abilities and the choices I’ve made, fear that it won’t change, disappointment in myself and anger about all the wasted time. It’s a wonder sometimes that I’ve kept my sanity.

I admit I am my own worst judge. I don’t know why. But I have little appreciation for my struggle; for the things I have accomplished (my college degree being one of them), for the fact that I am still trying and I still want a job, or for any determination, resolve or strength that others see in what I have experienced.

And none of this takes into account how I really feel about my long struggle, myself, the state of hiring practices or the way potential employers treat applicants. Frankly I am sometimes so fed up and angry about this struggle it would probably surprise people if I expressed it. If someone were to ask how I keep going the only answer I could offer is, do I have another choice?

I keep thinking that a good well paying full time job that I enjoy will solve so many things for me. I can’t know that for sure since I haven’t had one but I can tell you for sure that not having one has been detrimental.

I am surrounded (and have been for years) by people and stories of people I don’t know living the picture I painted for myself in terms of their careers. Friends, acquaintances, scores of college alumni that I don’t know, even my boyfriend with a new job he got last year. It can be hard to listen to and watch the people in your life living what you didn’t have and don’t see in the near future. Some days I am jealous. Some days I am resentful. I would never wish my experience on any of them; I just want something more for myself.

Unfortunately I have never been surrounded by that helping hand or “chance” that is often talked about by those who are successful. Please don’t misunderstand; I am not looking for a hand-out. I am not looking for someone to give me a job I’m not qualified for. I am not even looking for sympathy in writing all this. I do not expect to be handed the perfect job, but sometimes this struggle feels ridiculous and stupid.

All I’ve ever wanted when it came to my career was a chance. A chance to prove that I am capable and can do something. To prove to myself and others that I am not stupid or lazy or a dozen other things I have thought about myself. To show the world (at least those in my world) that I am creative, resourceful, empathic, and can be successful. Somebody at the hundreds of good jobs that I’ve applied to and interviewed with to say YES!

What I found in all these years is that a career or even a job search is never a straight line to employment or success. My path has been difficult, interrupted and varied; I don’t (and have never) fit your perfect cookie cutter mold. This does not mean that I wouldn’t be a phenomenal employee; a hard worker who is reliable, prescient and a problem solver. I am all those. I believe people want to be inspired by what they do as much as they want to make a contribution. I believe people will go above and beyond for an employer if they love what they do. An employer only has to give those us with this type of history a chance. I could be one of your best employees…

I can’t be the only person in this country to struggle to find and have a well-paid, successful, long lasting career. At least that’s what I tell myself. I can’t be alone in this.

I do not have the answers for how to solve my problem. If I did I would do whatever it is. And before you start making well-meaning suggestions, please reconsider. I know people mean well. My experience though has been that suggestions and advice are often not based on what works for the person they are talking to but for the giver. Or the advice ends up feeling like criticism.

Since I don’t know what to do, instead I fumble around for ideas to change something. I’ll move to a different part of the country. I’ll apply to different types of jobs than I applying to before. I’ll change my resume and cover letters. And with every difficult application or automated rejection I think I’ll write a book about what’s wrong with employers hiring practices these days. This, oddly enough has been what I’ve been doing with my free time recently; I wrote a book (fiction, not about hiring practices). Maybe one of these days I’ll publish it, become a wildly successful writer and stop living in the cycle you have been reading about.

Until then, here I am, continually trying; continually looking for a career that I haven’t had but very much want. I’ll give you a hand if you give me one…

- Anonymous


Thank you, Anonymous, for sharing your personal experiences with our community. - The Headstrong Nation Team


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Note: The following letter was submitted by a member of the Headstrong Nation community who would prefer to remain anonymous at this time. The writer discusses personal experiences living with a learning disability, and the desire to be a part of an inclusive and supportive community of other adults with dyslexia/LD. We appreciate this writer's honesty and willingness to share with us. - Eileen, Headstrong Nation

Photo of cloud with text: The learning disability I didn't understand

(Photo Credit: Eileen Tait-Acker)


Hi Eileen,

So I feel like I need to start with this; I hope this doesn't change anything but I need to clear something up. I am not Dyslexic. I have an auditory information processing disability. Whether it is appropriate or not other LD's get lumped into Dyslexia quite often (my guess is because it's the most common LD). One of the things I have learned through reading or listening to other people with an LD is that we all share similar "symptoms", experiences and feelings.

It has never been easy for me to talk about my Learning Disability (as I'm sure others have found the same) so know that I have taken a breath and am walking really far out of my comfort zone in doing this.

Although my mother was aware of my Learning Disability (and a speech impediment) when I was a child and teenager I did not know about or understand it the way I believe I should have. I was in my twenties before I got another diagnosis and then fully learned about and understood my LD. We could have an entire conversation about the negative feelings I have about that. But it is definitely why I'm so adamant about parents telling and helping kids to understand theirs as young as possible.

My inquiry to you about including personal stories to the website came about for two reasons; first because over the years since my (adult) diagnosis I have found that many LD organizations, 'experts', people giving LD advice usually talk about us instead of to us. To parents instead of the child with the LD. Speaking to adults with an LD seems to be even rarer (Or letting them speak for themselves). To me it seems the LD adult experience on any topic has been rare. (That is one of the reasons I like Headstrong Nation so much). :) Or everyone written about is a success story. Do A, B and C and your Learning Disabled child's school and later life will be a breeze. (Oh ok…) I have never understood those things. And I have always hated them. The other reason I asked about direct personal stories came out of frustration. Feeling frustrated one day last week I wrote my history on one topic. I've attached that experience about my life.

I always find it interesting and a little troublesome that LD organizations and others in the LD community concentrate so much on school. It’s important of course, and when you’re a child or to parents it seems like everything but the truth is more of our lives are spent as adults than the twelve (or sixteen with college) years that we spend in school. A learning disability (of any type) doesn’t go away; you just become an adult with a Learning Disability. And “symptoms” come with you (along with long held thoughts and feelings about yourself). Those things don’t seem to be addressed much.

Lower grade school through high school were difficult and trying and awful in numerous ways for me (yes I’ve got several ugly stories just like other LD adults do) but believe it or not college was much easier (academically anyway). I was in high school before I was placed into any type of consistent “special ed”. I didn’t understand what was “wrong” with me and I didn’t know what the adults thought I was supposed to get out of the “resource” class I was in. It didn’t feel like there was “a goal”. It would be another eight years before I got the diagnosis that changed anything for me.

It was the one that actually provided information to me. The one that helped me to understand “what was wrong”, that I had strengths just as I had weaknesses, that I wasn’t dumb, stupid, damaged or just always wrong. It was the one that let me be able to starting standing up for myself. It was the diagnosis that gave me accommodations in classes (I was in college when this happened). And It was the one that allowed me to gain some self-confidence, to believe that I might be successful in something, the ability to feel a little tiny bit less confused, ashamed, guilty and hopeless. I have no way to tell you if I would have felt and looked at school, myself or life differently if I had grown up knowing about and understand my Learning Disability, I can tell you that learning it as an adult was at once comforting, heartbreaking and devastating.

Looking back now somehow challenges and hardships in the school years look different; it’s not that you forget them or even necessarily feel different about yourself but they get blurry as the years go by. The importance of school somehow changes. As an adult I know that all grades levels in all schools are regimented in what they teach in subject and that it is done in a regimented way; it is not made for a student with any Learning Disability. It may never be. I suppose this is why all of the emphasis is on the school years though. It’s probably also why I was more successful in college.

What I know about my living with my learning disability is that the cliché isn’t true; in school all the focus was on what I couldn’t do (because curriculums are designed for “normal” students) and once I was an adult and out of school…The myth says that once we’re out of school an LD child will no longer fail all the time. Only it’s not true because I haven’t changed, I still have the same Learning Disability and I still struggle with the same processes I did in school. The difference is it no longer has to be the focus of your life. If you go into a career where your weaknesses are minimized and the things you are good at are the things you do, your learning disability will only be 50% of your daily struggle instead of 100% of it. (Calculations may vary by person). Haha.

With my Learning Disability I still have constant frustration, constant distraction, frequent times of information overload, and constant doubt and failure.

I wish I could tell you I felt like my learning disability has had some type of benefit or strengths. I have never felt that way. I have never understood calling it a “difference” or “gift”. That has not been my experience with it. In the years after my (adult) diagnosis I wanted to find a way to share my negative experiences and hard lessons. Not for sympathy but for others lives or the people in them. I hope that one day I will be able to say that became the benefit of it.

So, this is the overview of my life with my learning disability. I have left the details and feelings out on purpose; they are difficult to get across in writing.

Thank you for listening to my ideas and experiences. I appreciate and have enjoyed our conversations very much.

Thank you, Anonymous, for taking the time to share your experiences and thoughts!

Please visit the Headstrong Nation Facebook Page, follow us on Twitter at @headstrongnatio, and check out our videos on our YouTube Page. Thanks for being a part of our community!

- The Headstrong Nation Team

Photo of celadon glazed pottery bowl

Imagine being asked to cover a lunch break at a folk festival for an artisan that you are planning on apprenticing with. You are given a cash box, and a little worn out card with sales tax amounts printed on it. You have no calculator. You mention to the artist, a potter, that you are not good at math, and that you are uncomfortable with this idea. She giggles and says “nonsense! I will only be away for a half hour to grab a pulled pork sandwich. You’ll be fine.” You feel ashamed because she is minimizing your concerns. You’ve always been “math anxious”. Your inability to work with numbers has affected your life in many ways. You always did poorly in school, and couldn’t keep a waitress or retail job operating a cash register. Your dreams of becoming a nurse were dashed because you failed the medication math exam and you dropped out of nursing school as you felt inadequate. Your parents were disappointed in you. You felt lost and less than. That was almost 20 years ago. You are only being asked to play cashier for thirty minutes but the pressure you feel is tremendous. You tell yourself again, "I’m an adult, how hard can this be? You can do this!"

You are asked to take an item of pottery the customer would like to purchase, wrap it securely in paper, place in a bag, then add up the total cost of the items. Once you have a subtotal, you will look at the paper card to obtain the sales tax and then you’ll add the sales tax onto the subtotal and let the customer know how much he owes. After you’ve been given the money, you will make change and give this to the customer. You take a deep breath, and wait for the first customer, determined to do your best. Five people approach your stand, and your mind goes blank. Everyone is waiting, your hand is shaking as you try to add the numbers on a pad of paper. You’ve given back the wrong change, miscalculated totals, and forgot to add in the sales tax. Forget about counting up! You find it difficult to breathe, your face is flushed, you’re sweating in your long plaid skirt with a stupid frilly bonnet on your head. You keep smiling though, pretending like you have everything under control, handing out business cards for the potter, complimenting the customers on their choices, and wondering why you ever agreed to this in the first place.

Graphic Numbers make me numb with math signs and numbers all over the page

A half hour later the potter returns from her pulled pork sandwich, notices your mistakes and your upsetment, and shoots you an expression of mild annoyance and disappointment when you inform her that you’ve just botched up a number of transactions. Now, it’s your turn to take a break. In a fog, you wander aimlessly around the fairgrounds, trying to make sense of what just happened. You don’t feel hungry, and you don't feel like looking around at the sights. You’ve shut down. You can’t feel your feet on the ground, as you’ve gone numb, you’ve stuffed it inside. You count down the hours until the end of the event. You are silent on the ride home, and you find your mind trailing off during the chatty upbeat conversation in the car. You aren’t feeling very upbeat. You have no appetite for the ice cream that the potter stops to buy everyone in the car. You felt you didn’t deserve the ice cream anyway, since you're such a “screw up”.

You return home and the tears come. Your husband meets you at the front door, wide eyed. You rip off the stupid skirt and stuff it, and the frilly bonnet, in a bag. It’s hard to shake these feelings off. They are all too familiar. You feel ashamed and inadequate. Then comes the anger. You’re angry at yourself, angry at the potter, angry at the other woman in the car who can make change. Why didn’t she listen to me? Why didn’t she believe me? Then you berate yourself. There goes the tape again. The one that plays itself over and over when events like this happen. There is something fundamentally wrong with you. Why can’t you do what others do so easily? The tape continues, and you let it wash over you. You feel small.

photo of small ceramic pots on a hand

A week later, you write the potter a polite note, thanking her for the opportunity to help and for the ice cream. You repay her for the price of the clay that she had offered you in exchange for helping her out. You inform her that you are unable to apprentice with her in her studio as something’s come up, and you don’t offer her any more details. She’d never understand anyway. You’re done. The block of clay sits unused, and you let your dreams of working as a potter fade away. The next folk festival you attend, you cringe when you see a sign for pulled pork sandwiches. You never liked pulled pork, anyway...

Shame. Another opportunity lost.

I was the apprentice. - Eileen

Moving Forward:

In the past I let my failures define me. I know better now. My failures are not who I am inside, or what I am capable of becoming.

Failure and missed opportunity were an ongoing theme for me. I focused on my weaknesses at the expense of my strengths, and I was uncomfortable asking for help. I did not understand that my failures could be opportunities for learning and growing. I spent a lot of time comparing myself to others, and always fell short of my ideal. I dropped out, quit and started again many times. Persistence wasn't something I was good at. I preferred to run away.

At the age of 18, I dropped out of nursing school in the first 10 months, after struggling through the program and failing a medication math exam. I felt the need to get away, so I applied to live as an exchange student in Sweden for a year to “find myself”. Living away from home helped me to gain some perspective, and gave me some time to lick my wounds. Upon my return to the U.S., I was able to begin a Bachelor’s degree in Psychology. It was a major that did not have a huge math requirement, and my advisor let me work around some of this creatively through taking a foreign language.

I realized that one of the things I enjoyed most about my brief experience as a nursing student was helping each patient to feel as comfortable as possible during their stay in the hospital. I was able to identify this desire to help others as a strength for me which helped in the selection of my new major. I obtained my degree in a little under 10 years part-time, while I worked at a variety of temporary jobs. The combined work and college experience was stressful for me, as I struggled to maintain a healthy GPA.

This was a time before PC’s and Macs, and Iphones with apps. The technology that most of us take for granted now. All assignments were either written by hand or on an electric typewriter, and I used my share of Wite Out. Toward the end of my senior year, I spent much of my paycheck from the local college diner where I worked to hire a typist who could read my poor handwriting and type my research papers. I requested a dishwasher job working the night shift, as I never got the hang of waitressing as I was unable to keep track of who got which meal at which table, and I was afraid of operating the dreaded cash register. At age 27, upon graduating, I chose not to celebrate my success with a graduation party. I felt I had taken too long, and it was time to move on to the world of work, whatever that might look like for me. In retrospect, I wish I had acknowledged my achievements and taken some time to celebrate.

Hindsight enables me to understand my past struggles. After my youngest son was identified as dyslexic, I began to reflect on my past and was able to put together the pieces. I realize that my challenges in math, although I'm not formally diagnosed, are likely due to dyscalculia, a math disability. I realize now that it's never too late to learn something new, to ask for help, and to choose a new path for myself that is more in line with my strengths. It’s how I perceive my failures and how I rebound from them that is most important. I understand that I must be vigilant, daily, at keeping those old ineffective, damaging messages of the past from occupying my mind. it’s important for me to reach out to others early and often when I’m feeling stuck. I know that persistence and hard work pays off, and that it’s important to be patient with myself. I make mistakes daily, but I am not a mistake. I've learned that it’s o.k. to fail...Really! It’s how I will grow.

More on the value of failure coming soon!

Eileen

Share your stories! We'd love to hear from you! Please visit us at our Headstrong Nation Facebook Page and share live, or if you'd prefer, message us privately at the page. Follow us on Twitter @headstrongnatio Follow us at our Headstrong Nation You Tube Channel too! - Glad you are part of our community! - The Headstrong Nation Team

Photo of Sunset with text - Moving Beyond the Shame


This is dedicated to Natasha, Ben, and Larry for seeing beyond my limitations while enabling me to focus on my strengths. For this, I thank you.

Strengths, Guilt, and Shame

There has been a lot of talk about the inherent strengths related to dyslexia, the spatial ability, creative and artistic talents, out of the box thinking, and entrepreneurial skills. This is all very empowering and wonderful to see. However, there seems to be less conversation about the shame associated with dyslexia and this concerns me. Shame isn’t something we generally want to discuss, but until we confront our shame by revealing ourselves and sharing our fears with others, it will be very difficult to move forward. The shame associated with dyslexia will rear its ugly head at times throughout our lifespan even when we feel we are at the “top of our game”. Some individuals experience more feelings of shame than others, based on their individual experiences. Shame is toxic, and it affects how we relate to ourselves, to others around us, and how we approach situations daily. As an adult, the events of the past come to visit me on occasion as painful memories, and they can affect my perspective, beat me down, and wreak havoc with my self-confidence. What goes on in between my ears can be very powerful, and at certain times, won’t be easily silenced.

Shame is not guilt. Guilt is an emotion that you may feel when you do something morally or ethically wrong. When a young child takes a toy from a friend, and stuffs it in his pocket because he wants it for his own, he knows that his actions are wrong, and he may feel guilt as a result. Guilt is linked to an inappropriate action or behavior. Shame, on the other hand, is an emotion stemming from the behavior or action of a person that is often judged negatively by another. This emotion is one of deep humiliation. As the behavior often cannot be changed, the person feels wrong to his core, for something that he may not have any control over. He feels powerless. Shame occurs when you personalize an action or behavior and attribute it to who you are inside, in your soul, your heart, the fiber of your being. You give yourself permission to become “IT”. "IT" may be translated into stupid, incapable, or a failure. “I have failed a test, therefore I am failure”.

Some Experiences with Shame:

Reading - Were you made fun of when you read aloud in class? Did you dread this activity? Did you count the number of seats ahead of yours to figure out which paragraph would be assigned to so you could attempt to practice it before it was your turn? Then, when you fumbled through it, did your ears turn beet red and you couldn’t feel your feet on the floor? Did you re-read passages over and over again and still not understand what you read? Did most of your peers seem to have an easier time of it in the classroom? Did you find homework looming on forever? Did you feel alone in this?

Shame – I am wrong. Something is wrong with me. I am stupid.

Writing – Did you feel like you wanted to form the letters neater but that your hand wouldn’t cooperate? Did you secretly envy others with neat handwriting? Did you make so many erasures that you made holes in the paper? Did the thought of answering a prompt or short essay send you into a panic? Were you at a loss on how to start? Did you have a lot of ideas in your head but couldn’t get the right words to move from your brain, down your arm, and onto the paper? Did your teacher’s frowns and the big red “D” or "F" on this paper make you feel worthless?

Shame – I am worthless, I am deficient. I'm no good.

Spelling – Did spelling words make you crazy? Did you practice over and over and still get them wrong for the Friday test? Or if you got them right on Friday, did you forget them by Monday? Did your flash card pile get bigger and bigger? Did you do some of your best writing and still get marked down because of poor spelling or punctuation?

Shame – My brain does not work, I’ll never get this, I want to give up.

Directions and organization – Do you get lost easily, even with the GPS? Do you lose your place, do you fight with your computer and can’t find files? Is your left the “other left” and your right your “other right”? Do you struggle to read a map, figure out which way to turn the key in the lock, figure out where you stored the file, which way to open the faucet, and so on. Do you move in circles? Do you spin your wheels?

Shame – I am so incapable, so frazzled. Why can’t I get this?

How many self-defeating statements continue to be part of your repertoire, the tape that continues to play in your head? Do you find that this negative “self-talk” continues to limit you? In an attempt to move beyond it, do you also engage in self-defeating behaviors, like retreating, stuffing emotions inside, overeating, or other quick, self-soothing, yet destructive actions that serve to keep you down? Do you blame others or play the victim?

Have you had the desire to apply for a particular job, but feel fear at the thought of completing certain aspects of the job due to your challenges with dyslexia/LD? Have you passed over these types of jobs because the thought of disclosing your weaknesses to your employer in an interview petrifies you? Do you find yourself “quitting” before you even accept the job? I have engaged in this thinking numerous times and it has cost me many missed opportunities and limited my potential. However, I know that my situation won’t change unless I make the decision to change from the inside. It starts with me... letting go of my shame.

Picture of a sky

So how can you begin to move beyond the shame? As I can only speak from my own experience, I’ll tell you what I'm determined to do, one day at a time, to work through the complex emotions that occur as a result of dealing with the shame that rears its head in my life: It's time to re-write my script, to reinvent myself. One step at a time.

What Helps Me:

I share. I talk about my dyslexia/LD with friends and family I know and trust (My dyslexia/LD community). I am upfront about what works and doesn't work for me and I keep no secrets about this. I let my guard down and let myself be vulnerable, and open to feedback.

I listen. I listen to others’ stories of how they’ve risen above the paralyzing effects of shame related to their dyslexia/LD. I ear-read or eye read articles and books that inspire and encourage.

I watch and Learn, viewing webinars, talks, and videos from experts in the field on topics like letting go of shame, and letting myself become vulnerable. I explore ways to tap into my strengths and to increase my self-confidence. I also learn much from my son, who is way less serious and intense about life and his dyslexia. His youthful wisdom helps to keep me in check!

I engage with and help others in any way that I can. It’s in our relationships where we can truly flourish, learn and grow, through our shared experiences. In a supportive community, of others who “get me”, I know I am not alone, and this is very empowering.

I redirect myself in healthier ways. I work daily on avoiding ineffective coping methods. I reach out and talk to trusted friends who know how hard I can be on myself. This is much better than keeping it all inside, over eating, or engaging in other self-defeating behaviors.

Letting go of shame isn't easy, but it is possible. Accepting yourself, confronting fears, finding a supportive community, and changing your negative self-talk and behaviors, are all positive steps in the right direction. Releasing the shame in your life will leave you open to embrace your strengths so you may begin to live your life to the fullest!

Eileen

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When I sit and reflect about my experiences growing up in school, it is far from funny. I know what it's like to endure the entire class in high school laughing at you because of your inability to read aloud. I know the feeling of embarrassment and shame when a friend gives you a spelling dictionary as a gift because your spelling is so atrocious. I know what it's like to be a dyslexic who was not identified until adulthood. The weight of finding out about your learning difference so late in life carries a heavy load and really messes with you. I carry a lot of baggage from my past and it has taken a lot of work and perseverance to iron it all out. I knew early on that I had two paths I could take to deal with my new friend called "Dyslexia." One path was to harbor anger and resentment while continuing to bury my shame and pretend everything was great on the outside. Or I could choose the road less traveled, take a deep breath and face the demons of shame, and arrive at a place where dyslexia is hysterical. I chose to do the heavy lifting and face my dyslexia head-on.

scrabble game board with dyslexia, no shame and hysterical written on it

Two years ago I might have traded my dyslexia in to be "normal." What I didn't know then is there is no such thing as "normal." Who decided what normal is, anyway? Today I live a very funny life and it provides endless comic relief. A few months ago while browsing Facebook, I saw a friend's status that said something about a gopher eating the grass in her backyard. For about 10 minutes I was trying to figure out why a golfer would be eating the grass in her backyard. Trying to rationalize this, I figured she lived on a golf course. Although this still didn't answer the question why a golfer would be eating the grass, I suddenly realized it was a GOPHER! It's like a scene out of Caddyshack but this is my real life! I spent the entire day laughing over this.

Shortly after this incident yet another prolific event sent me into hysterics. I was reading aloud a list of cities. I read placenta for Placentia. This might seem like a minor error that could happen to anyone; seriously that "I" seems pretty sneaky to me, but when your friend bursts out laughing and your daughter asks, "What's a placenta?", there is nothing more to do than laugh. How about the time I showed up to a dyslexic support group meeting when it was over? I had read the end time as the beginning time. Oh, the irony of it all is just too hysterical! These funny little things happen to me almost daily. It's so bad that my now 11-year-old tells me, "Mom! It doesn't say that!" when I read to her. Good thing the endless hours of tutoring for her dyslexia are paying off. Maybe she should start reading to me now!

Dictionary entry for shame

Sure, I could go for self-loathing and embrace a shame storm, and yes, I do find myself there sometimes. However, I try not to allow myself to wallow there for too long because I recognize nothing positive can be created from that space. To be quite honest, it's just way more fun finding the humor in my mistakes. With two dyslexic children learning to come to terms with their own dyslexia, it's vital that they learn to have a sense of humor about it as early as possible. In our family we spend a lot of time laughing. Out of all the disabilities one might have, dyslexia has got to be the funniest. That being said, would I trade my dyslexia today to be "normal?" The answer is no. Sure, there were some really difficult and discouraging times in my life, but I don't have to live in that space forever. I can move beyond the past and embrace that who I am today is a result of what I have experienced in my life. Through my weaknesses I can find strength and perseverance. I am still a work in progress and have a lot of ironing out to do in my life, but I know I have a choice of which path I want to take. I choose humor, because if I don't it's a slippery slope to self-loathing and despair. The next time you head to the city of Placentia, I know you'll be thinking of the city "Placenta" and will laugh!

Dyslexia: It's a funny life I lead and I wouldn't change it for anything!

Stacey

Disability or Difference? It’s Personal. You decide.

A few weeks ago on our Facebook page we posed two questions:

1. “When you define dyslexia do you use the term "disability" or "difference”?

2. “Or, do you use both terms depending on the situation?”

We received some very personal responses. Many chose the term difference over disability, as these individuals would prefer to drop the disabled label, which points to what one cannot do. These respondents would much prefer to accentuate the inherent strengths associated with dyslexia and would like to avoid the stigma that often occurs as a result of this label.

The term “disabled” is a label that many feel is exclusive to the school experience. The thinking is that the school experience is what actually disables the student because the school’s personnel may not be effectively trained to teach to the child in the way that he learns.

Some parents don’t want to identify their children at all as learning disabled, for fear that this term might affect their children’s later academic careers in college or in the workforce. They’d prefer to not have any such notation in school records. For many parents, it wasn’t until their happy, smart, otherwise capable child first entered school, that the word disability ever entered their minds and vocabularies. Does this resonate with you? I know that I can relate to this in my own experience with my son.

Many people are okay using both terms: disabled and different. I am one of those who uses both.. I realize that it is necessary to work with the school district in the state that I live in and to speak the language and use the terminology that will ultimately provide my son with the supports and services which he’ll need within the school setting. I use the word disability with the school, specifically, SLD (Specific Learning Disability). SLD is what the school evaluation found, this is the wording listed on my child’s documentation, his IEP (Individual Educational Plan). The IEP, with Specific Learning Disability designation, was the document that I used to request and receive multisensory, structured, systematic Orton-Gillingham training for my son. Under Section 504 of The Rehabilitation Act of 1973 and IDEA (Individuals with Disabilities Education Act), school districts are required to provide a “Free Appropriate Public Education” (FAPE) to each qualified person with a “disability” who is in the school district’s jurisdiction, regardless of the nature or severity of the person’s disability. (See the following US department of Education Websites for more information HERE and HERE .

chart showing services you may obtain with disability designation vs. difference designation

Many parents need to choose the terminology that they use wisely in order to effectively advocate and receive FAPE for their children with Dyslexia. Those children who struggle with reading, writing, and spelling will only gain access to protections under Section 504 and IDEA in public schools if they have been evaluated and found to have an SLD. The term “difference” does not provide for these same protections under Sect. 504/IDEA. My son uses the term dyslexia and disability with his teachers to emphasize the need to use his assistive technology so he may continue to work at the same pace as his peers in class. He knows it is easy for a teacher, however well intentioned, to forget to keep track of what each particular Special Ed student needs at any given time in the classroom, and that because dyslexia is not often as readily visible as are other disabilities, a child can get lost in the shuffle if he doesn’t speak up and advocate for himself. He identifies himself as dyslexic with his classmates when they ask him why he uses a school-issued iPad to complete his assignments. He states “I need the iPad because of my dyslexia, as I have some trouble with writing and spelling.” While describing our dyslexia as a difference is a more optimistic way of describing our patterns of strengths and weaknesses related to our dyslexia,the term disability is the one that typically gets results in the form of services, supports and technologies, when used within the educational setting, however.

See Headstrong Nation get the facts #8 Dyslexia is a disability in some contexts HERE.

When it comes to self-identification, it is important for many individuals to define who they are based on their individual journeys and their struggles. They have fought long and hard in school systems without the proper supports and services they needed. They may have always thought they were deficient and stupid as they were never formally identified. In this case, learning that they have a disability answers many questions about what they’ve experienced in the past, and this information helps them to deal with their shame and to begin healing. For these individuals, using the term disability is an important part of their personal identification moving forward. It’s freeing.

As we learn more about the dyslexic brain and how it functions, we realize that there are inherent differences in brain function. The dyslexic brain responds differently to various reading and language based tasks, with differences even between male and female brains. Here’s an interesting article on the use of FMRI research on dyslexia in males and females from Dr. Guinevere Eden, of Georgetown University. There has been much discussion on the strengths of dyslexics, including strong spatial skills, etc... Brock and Fernette Eide of Dyslexic Advantage discuss the results of their dyslexic strength survey HERE, in an attempt to redefine dyslexia based on strengths. The Decoding Dyslexia (DD) movement has done a tremendous job in raising awareness about dyslexia and has pushed for the early identification and remediation of dyslexia for children by calling for effective teacher training programs on the early signs of dyslexia with appropriate intervention strategies. These moms appreciate and embrace their children’s differences, yet understand the need to use the word disability as they advocate for their children in the public schools and correspond with legislators in the US House and Senate. DD moms know that “different is good,” but in order for others to appreciate those differences, they must use the word disability to get what their kids need. We currently need to use the terminology SLD and the laws, IDEA/Section 504/ADA, that are currently in place, which provide protections, however imperfect they are. We have to be careful not to throw out the baby with the bathwater! .

Many of us hope for a day in the future when our education system will change. We await the time when all kids will be taught the way they need to learn, based on their individual patterns of weaknesses and strengths, and will be truly valued and embraced because of their differences. We hope that children will be able to demonstrate their knowledge in the classroom in ways that work for them, so that their true abilities will be appreciated and they will shine! Whether we identify ourselves or our loved ones using the word disability or difference, it’s good to know that we are all part of a powerful community of dyslexic individuals. In the end, our verbiage is a personal choice.

Get empowered and find community!

Headstrong Nation (Initiative for Learning Identities) is a non-profit dedicated to serving the adult dyslexic community, and we support the parent of the child with dyslexia. Headstrong Nation is committed to helping empower each individual, and we are interested in highlighting the strengths that can come with the dyslexic profile in addition to the weaknesses and challenges that we may experience on a daily basis. We value you, and want to hear your voice, as your voice will help to shape this community.

If you are interested in supporting our efforts and would like to donate to Headstrong Nation we would greatly appreciate this! You may donate via our RAZOO page below and while you're there you can view the film Headstrong Nation: Inside the HIdden World of Dyslexia and ADHD. Just click on the photo of the brain to start the film.

http://www.razoo.com/story/Headstrong-Nation

Thanks for being a part of our community !


Pic of college transcript


The "Better", Alternative Transcript

I’ll have to give Salman Khan credit for this particular idea. In 2012, Sal was chosen as one of Time Magazines 100 most influential people of the year. In the Time.com, April 16th article by Eliana Dockterman, Shaping the Future-See TIME 100 Honorees’ Predictions for the Future, Khan was quoted as saying: “Right now, transcripts have some statistics on your grades and maybe some standardized test scores. But in the future, they should include a portfolio of things you’ve created—­robots you’ve built, programs you’ve written, things you’ve painted, whatever—along with what your peers and your community think of you as a leader, a communicator and an empathizer. This is already what people care about, but it hasn’t been formally recognized.” – Salman Khan, Executive Director of the Khan Academy (TIME 100 2012).

This struck me as a perfect idea, one that is especially appropriate for members of our dyslexic community whose, strengths, skills and talents aren’t necessarily highlighted by the traditional high school or college transcript, as the qualities they possess are not often assigned a numerical value.

Pick a number.

Sure, traditional school evaluations and standardized assessments generate numbers which reveal strengths in subject areas based on one’s ability to ace these particular tests. But for those individuals who struggle with standardized testing, the transcript may not be a true predictor of their strengths, how they function as part of a team, whether they think outside the box, and show problem solving abilities, which are many of the skills that employers look for in employees. When employers and college admissions counselors rely heavily on numbers in isolation as part of the selection process, they may be missing out on some of the most brightest and innovative minds.

The idea of creating a better transcript, an alternative transcript, as a way to express an individual’s strengths is appealing. It makes great sense, and would be a way to set one’s self apart from the pack. The alternative transcript would create a positive narrative and profile of strengths of what the individual has created, written, and demonstrated in the community. This would be more visible and tangible, instead of just numbers on paper.

The Video Portfolio or Interview:

The use of video portfolios and interviews as part of the application and interview process for schools and the workplace is also appealing. If employers took the time to accept video submissions from individuals discussing the skills that they possess or if they granted brief video interviews through Skype, Google Hangouts or other platforms, they might discover great some great potential. The idea of looking "beyond the numbers" is important here.

The concept of the video interview reminds me of the 2013 film The Internship, starring Vince Vaughn and Owen Wilson. On the IMDB website, the film is summarized as follows - “Two salesmen whose careers have been torpedoed by the digital age find their way into a coveted internship at Google, where they must compete with a group of young, tech-savvy geniuses for a shot at employment.” I related to this scenario myself in my own life, as a mid-50’s tech-challenged female recently hired as a Social Media Manager for Headstrong Nation. In The Internship, Vaughn and Wilson participate in a Google Hangouts video interview prior to being accepted as interns at Google. Here's a clip of their interview from The Internship below. In the film, the characters "made the cut" after their interview, and were later offered full-time positions at Google. The message here... There's hope for us all!

In real life, Vince Vaughn identifies himself as a man with dyslexia/ADHD and credits his success as an actor to his struggles with his learning disabilities. You can read more about Vince’s story at the University of Michigan’s Dyslexia Help website.

I got to thinking about what my alternative transcript might look like. What have I created that I am proud of? What talents do I possess? What character traits do I have which might be valuable? I decided that I'm going to take some time to think on this, create my own alternative transcript, and share it next month on the Headstrong Nation Blog.

How about you? What would your alternative transcript look like? Remember, you are more than just a set of numbers. Take some time to create your "better" transcript and share it with us! Although we may not be able to feature all submissions, we would love to share as many as we can on our blog or on our Facebook page and in our Twitter feed, @headstrongnatio.

If you are interested in sharing, please send your submission to info@headstrongnation.org. We're looking forward to experiencing what you’ve created! Show your stuff!

US Capitol Photo

(Photo of US Capitol - Flickr Creative Commons)

We received a letter from Headstrong Nation friend Lyn Pollard, the National Center for Learning Disabilities NCLD Parent Advocacy Manager with an invitation to join a conversation. The NCLD is holding a Parent and Community Conference Call on Wednesday, April 22, 2015 at 12 Noon, Eastern Time (ET). As some of you know, there has been some discussion over the past few days over social media regarding the Senate's rejection of Senator Bill Cassidy's ESEA Amendment to the Every Child Achieves Act of 2015, Title II Part A. Let me share Lyn's letter first and then I'll explain more on the background of ESEA and why your voice is needed to be part of this ongoing conversation.

Hello,

Speaking on behalf of the NCLD Policy & Advocacy team - we are BLOWN away by the parent and community push this week on Senator Cassidy's ESEA amendments. It's been absolutely astounding - nothing less!

I am spreading the word to friends and parents - the NCLD is holding a Parent & Community Conference call on Wednesday 4/22 at Noon ET. This is our 4th call with parents since ESEA #LD debate & prep work began and we want to expand these conversations to include leaders and other voices in the LD/LAI Community.

We would love for you to join us. Lindsay Jones will guide the discussion between parents, advocates and LD community leaders as well as provide information about next steps. The calls will also include an open Q&A time and an opportunity to share ideas and updates from within the community on advocacy efforts. Also, we want you to know that we plan to continue these weekly calls as we move forward through the ESEA reauthorization process. If you are interested in sharing this information with your parent audiences and other key stakeholders, we encourage you to please do so. Everyone is invited to join in! The weekly call-in number is 605-562-0020 ID: 288-587-662

Thanks again for ALL of your help and support as a community. We hope to speak with you on April 22 at Noon ET - if not sooner.

Lyn Pollard

Parent Advocacy Manager

National Center for Learning Disabilities

So what is the ESEA, who is Senator Cassidy, what is his amendment about and why should you be part of the ongoing conversation? The ESEA is The Elementary and Secondary Education Act. It was signed into law in 1965 by President Lyndon Baines Johnson. Johnson believed that "full educational opportunity" should be the United States "first national goal". The federal government has reauthorized ESEA every five years since it's enactment. ESEA was designed to offer grants to school districts serving low-income students and federal grants for text and library books. It created special education centers, and created scholarships for low-income college students. The law also provided federal grants to state educational agencies to improve the quality of elementary and secondary education. The current reauthorization of ESEA is the "No Child Left Behind Act of 2001" or NCLB, named and proposed by President George W. Bush

Most recently, Education Secretary Arne Duncan has called for replacing the NCLB Act with a new ESEA. Some criticisms of NCLB Act have included the stringent accountability of schools to meet the requirements of the act without the adequate funding needed to meet the mandates and the stifling of both teacher and student creativity due to an undo emphasis of "teaching to the test".

So where does Senator Bill Cassidy fit into all of this? Bill Cassidy is a doctor, senator and father of a child with dyslexia. He knows the difficulties that parents may encounter in trying to find suitable educational programs to meet the needs of their children.

Cassidy’s amendment #1 to the Every Child Achieves Act of 2015 ESEA included allowing states and local educational agencies to use funding under Part A of Title II to train teachers, principals and other school leaders on understanding and identifying the early indicators of students with dyslexia and other specific learning disabilities, and to conduct early evaluations and interventions for students with dyslexia and other specific learning disabilities (SLD’s). Amendment #2 would amend Part D of the Title II to ensure that children with dyslexia and other SLD’s have the resources and supports they need to academically succeed.

Here is a video excerpt of Senator Cassidy speaking on the amendments courtesy of Dyslexic Advantage’s You Tube Channel HERE

The early identification and timely intervention for students with Dyslexia/LD’s is something that would help these children to academically succeed and thrive, and an act allowing the states to use this funding for teacher training, early evaluations an appropriate interventions would stand to benefit many children.

Unfortunately, some members of Senate didn’t support this, and Senator Cassidy’s amendments were rejected by the Senate this week.

Here’s a quote from Executive Director of NCLD James H. Wendorf's Statement on the Consideration of Senator Cassidy’s Amendment to the Every Child Achieves Act of 2015:

“Every day, more than 2.5 million children with dyslexia and other learning disabilities walk into schools across the nation, with dreams of earning good grades, making friends and having teachers who understand how they learn. Today, Senator Bill Cassidy (R-LA) helped push these dreams closer to a reality.”

Read the entire statement from James Wendorf HERE

How can we help our children's dreams to become a reality? By joining the conversation. Discussing next steps. You have an invitation on Wednesday, April 22, at 12 Noon, Eastern Time. The weekly call-in number is 605-562-0020 ID: 288-587-662

In closing, James Wendorf wrote:

“NCLD and our national network of hundreds of thousands of parents will continue to stand alongside Senator Cassidy in his advocacy for our children. We believe this change can have an enormous impact: For every teacher trained, countless students will benefit. ”

We agree, and hope you’ll join the conversation.

Sources:US Dept. of Ed Website - http://www.ed.gov/esea

Findlaw:http://education.findlaw.com/curriculum-standards-school-funding/critici...

Tracy Johnson is an accomplished speaker, educator, advocate, counselor, and minister who is also dyslexic.

Tracy's story is an inspirational one for me personally. Early in my Journey with Dyslexia as a parent of a struggling child and as an adult with dyscalculia, I came upon a community listing for a screening of the acclaimed HBO documentary film, Journey into Dyslexia, Great Minds Think Differently, directed by Academy Award winning Directors, Susan and Alan Raymond (2011). I attended the screening and the film touched me deeply. There was not a “dry eye” in the place. Susan and Alan Raymond’s excellent directing and interviewing skills drew heartfelt stories from all characters interviewed in the film. Tracy Johnson was one of the individuals interviewed in the film that shared her journey. I’ve since gotten to know Tracy on a personal level and I consider her to be the “Real deal” She’s a passionate woman on a mission to spread the word about dyslexia awareness through giving back to others as a leader in the dyslexic community. Our early individual journeys or those with our children who struggle with dyslexia may be quite painful, and it’s often difficult to see the light at the end of the tunnel.

Tracy speaking at the African American Museum in Phila, PA

Dyslexia: A Civil Rights Issue of Our Time

In the documentary, Tracy shared about growing up as a special education student in the School District of Philadelphia, Pennsylvania. She was raised by a single mom, and her early experiences in public school were very discouraging. She was daily confronted by a system that focused on her limitations so she did not have a true awareness of her innate potential. She was often labeled “slow” by teachers and peers. She endured many painful classroom experiences along with the rest of her special education classmates. One teacher told her group that none of them had the ability to go to college. Tracy had first-hand exposure to the low-expectations that often confront poor and minority pupils who struggle with the basic skills of reading, writing, and math.

Deep inside, Tracy had the sense that she had more to offer, that she could do more and be more. This motivated her to apply to community college, where she was once again told that she was not college material and was turned away. One college counselor told her to “Give up”. Discouraged, but not defeated, Tracy obtained a job as a custodian in the Philadelphia School District, cleaning school buildings, and working in the same hallways of the educational institutions that had many times failed her as a student.

After watching a TV sitcom where a character was diagnosed with Dyslexia, Tracy had an epiphany. She finally had a name to describe what she had been experiencing, “dyslexia”. It was soon after this time that she obtained a formal diagnosis of Dyslexia as an adult. Through the help of tutors and mentors along the way she began to learn, thrive and get accepted into college where she received both an Associate’s Degree and a Bachelor of Science Degree with high honors. (Harcum, A.A, Cabrini, B.S.). Tracy didn’t stop there though. She received her Master’s Degree in Multicultural Education from Eastern University, and at this writing is now pursuing an additional Master’s Degree in Special Education.

As a graduate student, one of the things that help Tracy with her studies is using her text and her Learning Ally audio books together as she reads. She has a recording device with her at all times during her lecture classes. She makes a point to sit up front in the classroom. On the first day of class she introduces herself to her professors and informs them about her dyslexia and how she learns best. Tracy acknowledges that it may be hard at first to be open and honest about one’s learning differences, but she found in her own experience that being honest and open actually helped her more than hurt her. Tracy uses flashcards to learn new information and she’ll sometimes record her own voice reading her cards and then listen to the recording. Tracy also finds it helpful to talk to family members, friends, even her dog and cat about the things that she is learning to help her to retain the information. She recommends that students should make a point to open up about their individual learning styles since “No one knows you better than yourself.” Owning your education and communicating your concerns with your teachers will inform and help them to be in a better position to help you when you need support.

vessels of hope icon small

Tracy credits her success to her faith, and the support from the many mentors, family and friends who entered her life. She turned her challenges into victories, overcoming poverty, and realizing her full academic potential. Her journey is a positive one and Tracy gives back to the community as an accomplished lecturer and advocate for individuals with learning disabilities – especially dyslexia. She is the President and Founder of Vessels of Hope, a mentoring and networking organization for minorities with learning disabilities. She is an in-demand speaker, who presents in a down to earth way as she discusses her rocky early journey of shame and her initial sense of failure, to her later academic achievement and success as an adult. Her story continues to inspire many individuals with dyslexia and other learning disabilities, parents, educators, legislators, civic and business leaders. Her persistence, belief, strong faith and ability to reach out for help, has enabled Tracy to become an agent of change, a true vessel of hope herself for the dyslexic community! I am honored to know and work with her.

Eileen, Tracy, and Susan Raymond at Dyslexia Awareness Event hosted by CDC, Allentown, PA

You can read more about Tracy’s work on the Vessels of Hope website and watch her in the documentary Journey into Dyslexia. Grab a box of tissues. Powerful stuff! Still gets me every time! My son says I don’t cry as much as I did in the beginning of our journey, though. That’s because I can see the light at the end of the tunnel. Thank you, Tracy.

Jenna wearing her original handcrafted 1 in 5 shirt

It was not long ago that we introduced you to 11-year old super advocate, Jenna, and her mom, Shannen. Our blog post, Proud Dyslexic & Part Time Snake Handler, spotlighted how Jenna was inspired to create a dyslexia ID card to help assist her in becoming a fierce advocate for herself while at school. Not only is Jenna inspiring her dyslexic peers, she is also inspiring the adult dyslexic community by speaking openly and embracing her dyslexia publicly.

Jenna strikes again! Not only does Jenna speak openly about her dyslexia, she wears her dyslexia on her sleeve…literally! As another way to help educate and inspire others about dyslexia, Jenna created these cute iron-on vinyl t-shirt decals. Shannen, Jenna’s mom says, “She wanted to share her shirt to get others to show their pride because she noticed there were not a lot of good shirts for kids.” Not only does Jenna wear her shirt proudly, she wants all kids to be able to display their pride as well. Jenna possesses a true entrepreneurial spirit and has begun selling these decals within her community.

Headstrong Nation is inspired by Jenna’s tenacity and pride of her dyslexic identity. She has totally embraced our motto of Strength Not Shame and we hope Jenna’s bravery will inspire you all to stand proud of who you are as well.

Thank You, Jenna, for paving the way and becoming an amazing example to us all!


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