Stories

rssfollow us in feedly

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 Johnson speaking to group

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 Tait-Acker, Tracy Johnson, Susan Raymond at JID Screening

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! 


 HN Banner Take the Survey Here

Headstrong Nation  is a non-profit dedicated to serving the needs of the dyslexic community.   We want to hear from you!  Please tell us how we can serve you more effectively going forward in 2015 by completing our SURVEY to share your thoughts and make your voice heard!  Tell you friends and family about us too, and encourage them to also complete the survey and share their suggestions. Your input is valuable to us.  Thank you for your support! - The Headstrong Nation Team

A lovely young college student named Abby contacted us a few months ago to share her appreciation for Headstrong Nation and our work in the dyslexic community.  We were interested in learning more about  Abby’s experiences as a college student with Dyslexia, and our interview with her follows.    

Headstrong Nation:  Tell us a little about your academic life before you were identified with dyslexia.

Abby: I feel like I have always liked school; I really have. I liked learning things and being in the classroom with my friends. I always wanted to please my teacher, which I guess made things easy on my parents. I honestly wanted to do well in school because I wanted my teachers to think highly of me. I had a lot of trouble with writing, and because we were young everything was handwritten, not typed. We had to write these journal entries, and I always had such a hard time with them. I had a really hard time remembering which way the letters went, and spelling was something I was certain I would never understand. As time went by, reading became a huge problem, too. I could see the words, and I could read them fairly well, but I had a really hard time understanding what was going on in the story. It was a comprehension problem. My mom and I once read the same book, and when we finished, each of us came out with two very different stories. As school continued math got harder, reading got harder, understanding text got harder, and it seemed like everything was taking me ten times more effort than it took everyone else. Grammar was the hardest. I mean, if I could barely understand the words themselves, then how on earth was I going to understand how to place commas, use proper sentence structure, and all that other nonsense?

Headstrong Nation: After you were identified with dyslexia, was it freeing in any way to know that what you were experiencing actually had a name?

Abby: Having a disability with a name wasn't freeing to me; it wasn't much of anything. It was a lot more like, “well at least people can’t say I’m stupid.” There was always the assumption that I was dyslexic. I showed lots of the classic signs when I was kid, and it was easier to say, “I'm dyslexic” to my peers than “I have a learning disability that relates to my processing and sequencing of things.” People tended to have an idea of what being dyslexic meant rather than my long official title before identification. By the time I was officially identified, I had already come up with a huge number of coping strategies, so I can’t even say that having a name for it meant that other people knew how to help me. I always knew how to tell people what I needed for them to help me.

Headstrong Nation: How has your college experience been so far?

Abby: Academically, college has been great! I am doing better in college than I did in high school. I disclosed my needs to the school upfront, and they have been super fantastic about the whole thing. I chose this school after attending an open house here when I was a senior in high school. I took a tour and I walked up to the student services table and told them what my needs were and what my head looked like from a learning perspective. A college representative looked at me and said, “I've seen lots of students with things like this. We have lots of tools to help you, if you reach out to us."  I applied to this school because of that interaction, and they have held true with their promise. I love being here. My professors, who are all Psychology professors, understand and respect my disability. They challenge and inspire me to the extent that I go out and do my own research and come back all excited to share what I have found! (I am a total nerd sometimes, but if I hadn't done so much research I wouldn't be writing to you now!)

Headstrong Nation: What are some of the favorite tools that you use?

Abby: I have a plethora of tools. My favorite is spell check, with an added twist my dad told me to try. Spell check will tell me I have a word wrong, then I mess around with it to see if I can make it correct, if I can’t after 60 seconds or so, I then fix it by having spell check do it. Often I find that I know the correct letters are there, but not what order they go in, so this helps a lot. Also, having access to a keyboard has been my saving grace. At 20 years old, when writing by hand, I still sometimes write backward. Having a keyboard limits my mistakes to spelling and spacing. Having access to audio books is another tool that has saved my life as student. I haven’t needed to use them as much in college, but in high school audio books were what got me through most of my reading assignments and some of my free reading too.

Headstrong Nation: Do you have any hobbies that you enjoy?

Abby: I love to scuba dive. I took SCUBA in college to fill my physical education requirement and loved it. I was certified in September 2013. This was a challenge for me because I had to be able to read charts, and understand them, because, well my life could depend on it, and that made it a great motivator to keep practicing!  Dive tables are really simple in theory,but I have a really hard time with them because there is such an importance in making sure they are correct. They measure the amount of nitrogen in your system, and let you know how deep you can go and when you need to return to the surface. Through scuba, I have made friendships and learned a great new skill!

Abby diving pic.PNG

Image of Abby courtesy of Ian Giouard. Used with permission.

(This is me on a group diving trip in Dutch Springs PA June 2014 (It was so HOT in all that gear!)

 

Headstrong Nation:  How did you find out about Headstrong Nation?

Abby: I am a Junior in college right now, and one of the electives I took this semester was Psychology of Reading. In class we talked about how we read, and what happens in our minds while we read. We came to a section on reading impairments and I was so excited because dyslexia is something I obviously understand. We watched your video Headstrong Nation: Inside the Hidden World of Dyslexia and ADHD. I honestly feel anyone who has been identified as dyslexic should watch it. I cried while watching it. I experienced such a wide range of emotions. I think the biggest feeling was one of community. I never felt that I was missing out on being part of something. I was just me. It was eye opening to see other people experience the same frustrations and to use some of the same outlets. I would love to be able to reach out to other people who are looking to connect through your Facebook page. I think my motivation comes from how much I love talking to people, and if I could help someone, or their parent, understand more, that would be fantastic!

I currently have a blog, which is up and running again after a many year hiatus. I started it just as a verbal rant when I was twelve years old after a terrible experience with a relative trying to help me with a math lesson. While they meant well, I walked away from that lesson feeling more confused and upset because I felt stupid. The good that came out of that experience though, was that I felt inspired to speak out, and my blog, “I’m Dyslexic not Stupid” was born.

Headstrong Nation: What are your future dreams, goals or career aspirations? 

Abby:  Oh gosh, I have lots of dreams and ideas and goals. I really want to hold a sloth!  But more seriously, I keep telling everyone that I am going to be the "House" of the Psychology world. I really want people to come to me when everything else has fallen apart. I want to finish my undergraduate degree in Psychology, and then continue on to a Masters in Behavior Analysis. I want to get married, have a family, buy a house, the standard American dream.

Headstrong Nation: Thanks for sharing your story with us Abby!  We are glad that you are part of the Headstrong Nation community!  


Ben Foss Photo

Author and entrepreneur Ben Foss is dyslexic and empowered. He understands the importance of accepting his own dyslexia, embracing it, and owning it. He wants dyslexic kids to do the same. Ben wants kids to see the strength in their dyslexia and understand it is not something to overcome or hide, but something to celebrate. It is a part of who they are; there is no shame.

Ben had the opportunity to speak candidly with Laura Kusnyer-Key of Understood on November 21, 2014 via live webinar. He spoke on why it's important for kids to own their dyslexia, use their tools, and play to their strengths. His message that he wants kids to experience less shame, and have more joy and confidence in their day to day lives resonated throughout the conversation. Focusing on what they can do, versus what they cannot, and learning effective self-advocacy skills, was at the core of his message.

Watch Ben describe his own experiences and offer some thoughts on how we can help our children to own their dyslexia.

 

 

Be sure to check out many other great articles and resources on www.Understood.org.

Dr. Richard Selznick

In October I had the pleasure of attending the workshop: Dyslexia-Reading Disability:Myths and Realities, presented by Dr. Richard Selznick and hosted by Center School in Abington, PA. Dr. Selznick is the author of The Shut-Down Learner- Helping YourAcademically Discouraged Child, a book I had read years earlier that really resonated with me and my struggles as a parent of a dyslexic child. With Dr. Selznick’s expertise as a Licensed Psychologist and Director of Cooper Learning Center, I knew he had a lot more to offer me on this journey with my son, and this workshop did not disappoint!

A little background:

Years earlier when I read The Shut-Down Learner my son Evan, then a third grader, was struggling with reading, writing, math, and ME. As Evan’s primary teacher in our home classroom, using a public cyber-model of education, I came to realize that much of what I was doing in an attempt to help him wasn’t actually helping him at all. Nagging didn’t work, nor did raising my voice. Bribing didn’t reap much either. I wanted so much for my son to learn like other children, but it didn’t take me long to realize that when it came to educating Evan, I couldn’t fit this square peg into a round hole. He learned differently. I needed to reevaluate what I was doing and to change how I delivered his instruction. More importantly, I needed to give my son a break and stop being the task master that I had become, expecting him to perform like other children. I needed to get out of denial, and get out of his way. I consulted his cyber school teachers and began an honest dialogue to get us all on the same page with what Evan was experiencing each day as a child with dyslexia. Dr. Selznick’s book helped to guide me. The book was filled with no-nonsense pearls of wisdom that hit home with each page that I read. I began to realize that Evan’s instruction needed to be modified and chunked. He needed to get up and move to keep him engaged in learning, and assistive technology needed to be introduced to help level the playing field for him so we could get through the day more efficiently. I began scribing for him when he needed it, and I encouraged him to do his best every day and to let me know when he was “at his max” so we could avoid meltdowns. I changed, instead of expecting him to, and we began to see success.

 Back to the Workshop:

Dr. Selznick presented in a down to earth way. His humor broke the tension in the room as he reminded us all, that with the proper remediation and supports for our children, they will get through K-12 education and beyond and become successful adults. As parents and educators we can be instrumental in helping them travel along this rough road as unscathed as possible. Dr. Selznick is generally uncomfortable with labeling kids, as he sees them more in gradations and shades of gray. He does acknowledge, that in a given family you may see both “rough road” and “smooth road” children. Smooth road kids have an easier passage from preschool to college. Rough road kids tend to have a bumpier passage throughout. Many kids are deemed “average” by the schools standards. They may be in the “lower average range”,but these kids struggle and because they are lumped into the “average” category they may not be getting the appropriate support they require in order to thrive. Kids need help despite whether they are of average or above average intelligence, and as parents we need to push for this help in the schools.

Dr. Selznick emphasized the importance of what he refers to as the Three Headed Monster of Reading: decoding, fluency and comprehension. He spoke about the myth of upside down/backward reading as an indicator of dyslexia, and how that can be a real obstacle to a full understanding of what dyslexia actually is. The importance of phonemic awareness, phonics/decoding, fluency, vocabulary and comprehension as key building blocks to a child’s academic success were also outlined. He spoke about the importance of verbal/non-verbal abilities, processing speed, cognitive efficiency, and working memory and their relationship to the above building blocks required for fluent reading. When it comes to assessments and testing for children with dyslexia, Dr. Selznick stressed the importance of going “beyond the scores.” There is a combination of quantitative and qualitative data that goes into the assessment and diagnosis of a child, but as Dr. Selznick put it, “dyslexia is not a score.”Visual processing tasks need to be looked at in addition to spelling and written expression. He encouraged us to communicate to educators to look at the” total child.”

The level of severity drives the level of intervention. Some children may not meet the criteria for formal services because they fall in the “average” range, yet they still need remediation. Suggested remediation is multi-sensory instruction (Orton-Gillingham), which can be provided individually or in small groups, as soon as possible after the child is identified. As the child ages, the focus shifts to incorporating more assistive technology (text to speech, speech to text, audio books, etc.) and accommodations for continued success in the classroom. Just as no two snowflakes are alike, neither are our children, as they are all neurologically diverse. Dr. Selznick ended the evening emphasizing the need to nurture the strengths in our different learners. He reminded us to help them discover their “smarts,” whether their skills are interpersonal, spatial/visual, mathematical, musical, linguistic, artistic, or even something we haven’t yet uncovered.

 

Moving Forward:

After four years of cyber educating Evan at home he has transitioned into our public middle school as a 6th grader. With a few solid years of Orton-Gillingham instruction, he is now tackling advanced Greek and Latin roots, so remediation does continue. As he is getting older our focus is shifting to using accommodations and assistive technology. He is getting trained to use some really cool apps on his iPad. The future is bright! As for me, I am still getting used to my new role as “just” mom and advocate now that my son has returned to public school. Evan and I don’t bump heads as much, and we are both happy about this. He’s a bright boy who has learned to self-advocate, and I am very proud of him. I cheer him on daily as he learns something new each and every day.

Did we travel down this road totally unscathed? No, not quite. But we are doing much better. Our school struggles have decreased. There is light at the end of the tunnel and hopefully years of smoother traveling ahead. Thanks Dr. Selznick for helping me along in my journey with my rough road child, and thanks to Center School for hosting this fantastic workshop. Visit Dr. Richard Selznick at - http://www.drselz.com/, on Facebook at The Shut-Down Learner: Helping Your Academically Discouraged Child, and on Twitter at @Dr.Selz.

Notes:

Dr. Richard Selznick will be one of the experts presenting on Dec 5th at Learning Ally’s first ever virtual conference on dyslexia for parents. Ben Foss, Headstrong Nation Founder and Board Member will also be presenting alongside Larry Banks, the new Chairman of the Board of Headstrong Nation. Here’s the link for registration (Early registration until Nov. 15th) – https://presentations.inxpo.com/Shows/LearningAlly/Site/registration.html

Dr. Selznick is also the author of another great resource: School Struggles-A Guide to your Shut-Down Learner’s Success.

Listen to Dr. Selznick interview Ben Foss on the Coffee Klatch – Blog Talk Radio

http://headstrongnation.org/community/blog/ben-foss-interview-dr-richard...

Jenna and Shannon

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

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

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

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


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

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

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

Jenna: Yeah. And some breeds give birth live.

Headstrong: What kind of snakes do you have?

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

Headstrong: You have a boa!?

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

Headstrong: Nagini...? 

Jenna: From Harry Potter.

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

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

Jenna and sisters with snakes galore

Headstrong: Is he actually tiny?

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

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

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

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

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

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

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

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

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

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

Jenna and her dyslexia ID card

Headstrong: Will you share your IEP points with us?

Jenna: Yes. My IEP says:

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

dyslexia card with IEP points

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

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

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

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

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

Headstrong: And what did you tell him?

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

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

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

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

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

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

Jenna: Dyslexia friendly...

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

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

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


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

Jenna and her pet snake
 

Pages