After three years of campaigning for dyslexia awareness and building our community (thank you, Meriah Houser!), Decoding Dyslexia Arizona is taking an important leap forward this fall by initiating the public policy changes our state needs to enable all children, especially the 1 in 5 with dyslexia, to learn to read. To support our efforts, today we are excited to launch our new website and, along with it, our blog. My name is Jenifer Kasten, and I am DDAZ's new Advocacy and Public Policy leader. I will be blogging about our community's efforts and priorities and would like to use this first blog post to tell you why I've decided to become involved with Decoding Dyslexia Arizona.
Our family's story
My daughter, "M," was one of the lucky ones. A very wise mom who had raised a daughter with dyslexia through adulthood noticed during M's pre-K year that she showed signs eerily similar to her own daughter at that age. We brought M for a private evaluation and learned that she was "at risk" for dyslexia. We began providing her with the recommended Orton-Gillingham method of instruction when she turned 5, and when she turned 7, we had her privately reevaluated. This time the diagnosis was clear: no longer simply "at risk," M had dyslexia. She continues to receive private instruction and she is still reading at grade level. (As a parent contributor for "LD Insights," the blog of the National Center for Learning Disabilities, I shared our emotional story -- feel free to check it out).
There is a saying
"To whom much is given, much is expected." Some may know it from the Bible, others from Spider-man, but it is a principle that resides deep in my heart. I set out to learn as much as I could about dyslexia, how schools approach it in Arizona, and how I might be able to make a difference for other students. I became involved as a board of member of Raising Special Kids and as a co-founder of PEN Phoenix, fantastic, nonprofit organizations that support students with learning challenges. The more parents I talked to, the more I learned just how unusual our story of early identification and remediation for dyslexia really was. The more typical scenario seemed to involve kids who remained unidentified as having a learning disability until they were in the later elementary or middle school years, at which point they'd fallen hopelessly behind and had suffered numerous debilitating emotional and often physical reactions.
Why was this happening?
Why were students with dyslexia not being taught how to read? I thought that's what special education was for? Having attended law school and spent many years practicing law before becoming a stay-at-home mom, I set about to try to learn what federal and Arizona law required with respect to students with dyslexia. The answer was startling: nothing. Although both federal and Arizona law require schools to evaluate and provide special education for something called "Specific Learning Disability," which can include dyslexia, the laws neither define dyslexia nor require that schools provide the type of reading instruction known to work for students with dyslexia. This is the case even though we now know that 80% of students in the "SLD" category actually have dyslexia!
As a result, when a parent of a struggling reader mentions dyslexia -- or even brings in the results of a private evaluation finding a dyslexia diagnosis -- public schools in Arizona typically respond by rejecting the report, with the explanation, "Arizona does not recognize dyslexia." These students may (or may not) be provided services for what the schools call something like "Specific Learning Disability - Reading," but the instruction is not based on the methodology these kids need. The most frustrating part about this situation is that parents often have absolutely no idea that what the school is offering is grossly inadequate -- until it is far too late.
Tell us your story
Several other states around the country have enacted very specific laws guaranteeing students with dyslexia the "free, appropriate, public education" required by law. Arizona is woefully behind the times, and we all need to work together to catch up for the sake of our children and our future. Although you may feel powerless against "the system," you can make a big difference simply by telling your story. Personal stories are powerful, because they create the sort of emotional connection that will spur people to action. So in the comments section below, please consider sharing the ups and downs of your journey. Is your child a struggling reader? Does he or she have a dyslexia diagnosis? What is your school doing to help? What sorts of changes would you like to see? Together, there is no limit to what we can accomplish for our kids, and that is why I have joined Decoding Dyslexia Arizona.
Our family's story
My daughter, "M," was one of the lucky ones. A very wise mom who had raised a daughter with dyslexia through adulthood noticed during M's pre-K year that she showed signs eerily similar to her own daughter at that age. We brought M for a private evaluation and learned that she was "at risk" for dyslexia. We began providing her with the recommended Orton-Gillingham method of instruction when she turned 5, and when she turned 7, we had her privately reevaluated. This time the diagnosis was clear: no longer simply "at risk," M had dyslexia. She continues to receive private instruction and she is still reading at grade level. (As a parent contributor for "LD Insights," the blog of the National Center for Learning Disabilities, I shared our emotional story -- feel free to check it out).
There is a saying
"To whom much is given, much is expected." Some may know it from the Bible, others from Spider-man, but it is a principle that resides deep in my heart. I set out to learn as much as I could about dyslexia, how schools approach it in Arizona, and how I might be able to make a difference for other students. I became involved as a board of member of Raising Special Kids and as a co-founder of PEN Phoenix, fantastic, nonprofit organizations that support students with learning challenges. The more parents I talked to, the more I learned just how unusual our story of early identification and remediation for dyslexia really was. The more typical scenario seemed to involve kids who remained unidentified as having a learning disability until they were in the later elementary or middle school years, at which point they'd fallen hopelessly behind and had suffered numerous debilitating emotional and often physical reactions.
Why was this happening?
Why were students with dyslexia not being taught how to read? I thought that's what special education was for? Having attended law school and spent many years practicing law before becoming a stay-at-home mom, I set about to try to learn what federal and Arizona law required with respect to students with dyslexia. The answer was startling: nothing. Although both federal and Arizona law require schools to evaluate and provide special education for something called "Specific Learning Disability," which can include dyslexia, the laws neither define dyslexia nor require that schools provide the type of reading instruction known to work for students with dyslexia. This is the case even though we now know that 80% of students in the "SLD" category actually have dyslexia!
As a result, when a parent of a struggling reader mentions dyslexia -- or even brings in the results of a private evaluation finding a dyslexia diagnosis -- public schools in Arizona typically respond by rejecting the report, with the explanation, "Arizona does not recognize dyslexia." These students may (or may not) be provided services for what the schools call something like "Specific Learning Disability - Reading," but the instruction is not based on the methodology these kids need. The most frustrating part about this situation is that parents often have absolutely no idea that what the school is offering is grossly inadequate -- until it is far too late.
Tell us your story
Several other states around the country have enacted very specific laws guaranteeing students with dyslexia the "free, appropriate, public education" required by law. Arizona is woefully behind the times, and we all need to work together to catch up for the sake of our children and our future. Although you may feel powerless against "the system," you can make a big difference simply by telling your story. Personal stories are powerful, because they create the sort of emotional connection that will spur people to action. So in the comments section below, please consider sharing the ups and downs of your journey. Is your child a struggling reader? Does he or she have a dyslexia diagnosis? What is your school doing to help? What sorts of changes would you like to see? Together, there is no limit to what we can accomplish for our kids, and that is why I have joined Decoding Dyslexia Arizona.
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