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    Posted June 17, 2014 by
    eduadvocate
    Location
    Austin, Texas
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Dyslexia-A Hidden Disability

     
    Having a son who is exceptionally bright, extremely curious and an early, articulate speaker, our son would make model cars out of boxes complete with wheels when he was three. Ben would have conversations with adults and people would comment on his maturity. Kindergarten hit us like a ton of bricks, Ben couldn't read, he wasn't connecting the letters to their sounds. The teacher had no solutions other than holding him back, the principal was offering “the gift of more time.” We know these wait and see approaches only waste precious time to start needed interventions. Like most parents faced with hidden disabilities we looked to our school for answers. We knew our son and something in the educational setting was very wrong so we hoped a different teacher would make a difference, First Grade was much better. Ben's teacher went out of her way to have him write letters in shaving cream trying to get him to connect the sounds to their shapes in what is known as multimodal learning, she would let him dictate stories to her tapping his mind full of ideas. This was a very different approach from the wait and see Kindergarten experience. But Ben still could not read. We were puzzled and troubled.

    My husband revealed that he had similar problems and began to tell stories of heart ache and frustration he experienced in school. He had tried to forget being labeled and called stupid, lazy. School was not a pleasant memory for my husband. While my husbands tales shed light on our sons issues they forced me to find a better way, I had to find answers. It is looking back at this moment that I wish that our pediatrician would have alerted us to signs and asked simple questions in her well check visits. Developmental screenings would have helped us with early identification, but as I stated Ben looked completely normal and spoke very well. I began my quest to have my son tested for learning disabilities although at the time I did not know that term. I had to find out why my son was not reading, we were beginning to lose that spark of wanting to learn, I did not want to lose my son or have his self esteem crushed like my husband.

    Testing took us to UCLA medical center where Ben was diagnosed with Specific Learning Disability, Dyslexia, Dysgraphia. He even had shown issues with basic math calculations although now we know he is actually mathematically advanced. Ben was a story of contrasts and the testing from UCLA was full of what diagnosticians call scatter. when testing shows high and low test results. This scatter is a big red flag that a Learning Disability is present. Ben had remarkably high vocabulary and verbal expression and remarkably low decoding and basic word level reading skills. Future tests would reveal more details but for now we had a name for his struggles and that name would define our lives forever. Ben was Dyslexic. I would become a Dyslexia advocate.

    Today Ben is in 8th grade, he is a voracious reader, yet he still struggles with basic word reading skills. Ben uses audio enhanced text, called “ear reading”, just as finger reading Braille, he uses Bookshares library of accessible books which links highlighted text to audio output in a kind of hybrid reading support. Ben's comprehension of accessible text is post high school, as are his vocabulary and math skills. Ben is mathematically years ahead and we see a future in both public speaking and STEM. Ben is an advanced learner all the while being a kid in Special Education who continues to struggle with standard print. All this despite years and years of intense phonics based interventions, both public and private with our out of pocket fees pushing $100,000 dollars. The one area that is the hardest for him is writing. Ben's dyslexia has a counter part called dysgraphia which complicates his ability to recode his thoughts into text.


    Our families journey with dyslexia spans generations and it has caused us to invest heavily in finding solutions. Political as well as personal. Ben and our family are committed to advocacy and we have made several trips to Washington DC to lobby for more dyslexia awareness in our education and health laws. Our son is a pleasure to be around, he still has a remarkable way to connect with adults so much so that he was invited to speak to the BiPartisan Dyslexia Caucus last November. Ben has been so active and vocal, he was chosen at the age of 12 as one of the AAPD (American Association of People with Disabilities) top 10 disability Advocates of 2013. This June 24-27th, Ben and our family travel to DC once again, this time with other families of dyslexic children to lobby for dyslexia awareness and specifically HR456 a house resolution on dyslexia. This will be Ben's 5th trip.

    What makes Dyslexia, a learning disability, such a challenge is that it is hidden, in that there are not obvious outward signs, no physical que that something may be different. This makes it far easier and much less costly for schools to take a wait and see approach when in fact early intervention is key to successful outcomes. Many times kids are labeled as lazy, not motivated or worse just not smart. In fact the opposite is true. Having a hidden disability makes advocating for needs at times frustrating and next to impossible for the average person. The casualty is the kids. Capable, bright, curious kids lost in a system that all to easily can look the other way or refuse to look into why these kids are not reading. Hidden disabilities take a catastrophic toll on our society.

    Today I am on the National Advisory Committee for Bookshare, I am a parent advocate for the National Center for Learning Disabilities, I am a member of Decoding Dyslexia, I am on the Board of Directors for Knowbility, a non profit that focus's on accessible web and workplace design for those with many types of disabilities that limit their access to digital print. I have committed my time to work with others to make sure that dyslexia and print disabilities are understood. Technology has allowed my son back into the classroom, into advanced courses and on and early track for college and future success. My personal mission is to make people aware of the signs of Dyslexia and the solutions.

    My husband beat the odds and is successful as a technology entrepreneur, like many successful individuals that have dyslexia their brain is wired for success but traditional school environments are not taping these circuits. We need to get these kids to a point where they can flourish. My son showed signs of creative and innovative thoughts early on, Kinder came and schools focus heavily on equating reading ability to academic potential which can destroy these bright minds. Our journey with a disability is not over, we have much work to do to change outcomes for the 20% of children, many who will go undiagnosed with a hidden disability.

    For anyone out there that is effected by a family member that struggles with reading, get in touch with a Decoding Dyslexia chapter in your state, find support, expect your child to progress academically and know that their reading ability may limit their ability to read traditional books but it does not have to limit their minds or access to print. Early identification is key, specific phonics based interventions are vital and do not overlook the many many technology tools that will allow a new future for success. Must reads: Overcoming Dyslexia by Dr. Sally Shaywitz and The Dyslexia Empowerment Plan by Ben Foss. Technology has opened door that were closed in the past and policy is beginning to open up the laws to better address and nourish this very special population of bright creative minds.

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