Be an expert on your own dyslexia.

Feb 13, 2014

Natasha

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

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

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

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

Because of the work of Dr. John Frauenheim, this kind of stuff actually happens.

Dr. Frauenheim caught our eye when we learned about an unusual support strategy offered by the Center where he works: personalized dyslexia identification cards that help students a way to explain their dyslexic identity and self-advocate for what they need in class. Before dyslexics are able to confidently tell their story, in their own words, without props, we can imagine how a signifier like this could be extremely helpful, especially in the early years.

Dr. John Frauenheim is the Associate Director at the Center for Human Development at Beaumont Children's Hospital in Berkley, Michigan. There he provides multidisciplinary assessments and treatments/strategies to the dyslexic and LD community.

We were curious about what other ideas and insights Dr. Frauenheim might have for us so we sent him a list of questions about his experiences.

Dr. Frauenheim answered, naturally, from a medical perspective. While this perspective differs slightly in how it talks about dyslexia, the shared emphasis on community and self-advocacy as key stepping stones to being an empowered dyslexic is very encouraging. Go team.

Read on for highlights from our interview. Thank you Dr. Frauenheim!

Note: All links and bolded text have been added by Headstrong Nation. :)

Headstrong Nation: You've mentioned that you selectively give individuals with dyslexia a card that identifies them as experiencing difficulty with reading and spelling. Tell us the history behind the card.

Dr. John Frauenheim: As one simple step toward self-assertiveness and empowerment we give dyslexic individuals an ID card that identifies them as experiencing dyslexia and looks rather official, i.e., hospital title and signed by a licensed psychologist. We do this for elementary school aged children as well as adolescents and young adults.

The use of the card can be very helpful at all of these levels. Elementary students, for example, will at times write the elements of their IEP on the back of the card to be able to present to teachers when they make a request for accommodations.

It can be very helpful, for example, when a substitute teacher comes in and wants students to individually read aloud in class. The dyslexic student can produce their card quickly and ask to be excused from that activity. The card can also be helpful for college students, for example, when they have a need to discuss certain issues or accommodations with an instructor. The card breaks the ice and allows for meaningful discussion.

We have had others where a formal statement given had to be signed, i.e., in the police department, and they are uncomfortable with what the printed version of their comments state. Examples are endless. The availability of an ID card for dyslexic individuals was something we saw a need for 25 years ago. The card has been in use since that time and, to my knowledge, we are the only facility that utilizes this particular support strategy.

HN: What kind of changes have you seen in the medical community around dyslexia and other specific learning disabilities?

JF: Cases of dyslexia have been well-documented for over 100 years. Research has steadily increased to a level where we now have a much greater understanding of dyslexia and how it impacts life. This has led to a growing awareness in the medical community.

Schools, however, have been slow to recognize dyslexia, feeling that it is some type of "medical condition."

On the plus side, programs for children with learning differences have improved over the years. Most recently, at least here in Michigan, school districts are approaching the concept of learning differences within the context of a "response to intervention" (RTI) approach, which implies that a young child in elementary school, where problems are noted, should have appropriate resource strategies available to them to address those concerns.

The importance of understanding dyslexia includes the fact that it is more than simply an eye-reading problem. We frequently note, for example, an extension into the area of math where dyslexic individuals find it difficult to memorize basic math facts, such as the times tables, that can impact functioning.

There is a frequent finding associated with immediate auditory memory/working memory that may affect the consistency with which one retains directions, multitasking, etc. More subtle language issues have also been described such as naming, word finding, and language organization, or the expression of ideas in an organized fashion. Spelling, of course, is affected with further impact on written expression.

HN: How important is early identification?

JF: Early identification, of course, is important. It may be difficult to specifically identify a very young person as experiencing dyslexia; however, risk factors should be closely examined and where there is some difficulty experienced, then appropriate intervention should be provided.

Dyslexia does not go away. It does, however, present on a continuum that may range from severe to least severe. At the severe end of the continuum, we see adults whose eye-reading skills have not progressed above an elementary level. These individuals are often ignored in the literature on learning differences/dyslexia.

Specific treatment for dyslexic individuals must be approached along at least four avenues:

1. Specialized instruction in language arts areas should be provided utilizing appropriate and well-documented evidence-based strategies such as the Orton-Gillingham Method.

2. We must introduce assistive technologies* very early in a child's education. As we work at improving eye-reading skills, we also provide ways to work around the interference of skill weaknesses.

Textbooks, for example, should be made available through some type of audio format to assist with reading fluency and, subsequently, comprehension (e.g. Learning Ally, Bookshare). The use of a computer with word processing becomes important with regard to written expressive language activities. Other computer programs that are available include those that allow for dictation as well as provide reading assistance. Another example would be the Intel Reader.

*Check out Headstrong Nation's Tools page page for a list of current assistive technologies.

3. We must review curriculum requirements as they might impact the dyslexic individual. The learning of a foreign language, for example, in the presence of dyslexia tends to be quite difficult. The frequent recommendation is to waive such requirements. Some school districts will allow sign language to replace a formal language requirement. The waiving of a foreign language can be accomplished even at the college level in many instances. Other accommodations, such as increased time for testing becomes important. Oral testing should be allowed as indicated, etc.

4. Universally, young dyslexic individuals entertain the notion of being "dumb." They compare themselves with their peers and/or siblings and realize that they are not achieving at the same level, which produces concern. They worry that they are not meeting the expectations of significant others. Early efforts at assisting in understanding dyslexia and how it impacts functioning are very important.

Dyslexic individuals need to become "experts" and learn how to appropriately assert themselves in terms of the accommodations that will be meaningful for them. Empowerment starts at an early age. It is extremely important to assure that success experiences occur both academically and non-academically.

HN: We believe that finding community and being honest about one's dyslexia is the key to becoming empowered. How do you support individuals that are struggling with coming to terms with their dyslexia?

JF: Recognizing that one has dyslexia is the key to becoming empowered.

In our setting we provide "demystification" sessions for those with a diagnosis of dyslexia and at times ongoing counseling to assist in looking at compensatory strategies and to address other issues related to self-concept.

It also becomes very important for "significant others" to have a full understanding of dyslexia. This not only includes parents, but also grandparents and others in the community where dyslexia may impact functioning, i.e., religious lessons, etc. At times, we offer small group counseling sessions for students with dyslexia to be able to learn from one another strategies that have been helpful.

Ongoing peer mentoring should be available. In the past we have had group counseling sessions for dyslexic adults. This has been extremely helpful as, in adulthood, dyslexics find themselves generally to be quite isolated, not knowing others, etc., and feeling that they lack any "power" to change life circumstances.

The areas of self-concept and empowerment must be addressed on an ongoing basis.