By Debra Roberts, Contributing Writer
Grafton – For Grafton resident Lisa Nelson, advocacy for students with dyslexia is a personal crusade. One of her three children, now in ninth grade, has struggled with the learning disability that affects the ability to read.
A former science teacher at Marlborough High School and a student of Westborough Public Schools, Nelson believes in Massachusetts’ public school system and hoped her children would benefit from a public education. Instead, she encountered a costly battle.
Dyslexia affects one in five students and is the most common and well-researched of all learning disabilities.
The problem, explained Nelson, is that although Massachusetts is effective at identifying students having difficulty learning to read, it uses a model and terminology that does not effectively help dyslexic learners. The Massachusetts Department of Elementary and Secondary Education and most school districts group these students using the broad umbrella term, Specific Learning Disability (SLD), and often never consider the possibility of dyslexia.
According to Nelson, many educators mistakenly assume this model will help dyslexic students without the need to identify dyslexia specifically or direct the instruction based on that diagnosis.
The Nelson family knows well that early screening and intervention are not the model in Massachusetts. Although the school could see that reading was a problem for her child, they did not identify the cause of the problem and dyslexia-specific intervention was delayed. Time passed but there was no improvement. Like many families, they needed to pay privately for testing to get an accurate diagnosis and private tutoring.
“Many of these kids are either slipping through the cracks and ending up functionally illiterate, or parents are paying for expensive tutoring or private programs,” Nelson said.
Nelson discovered that this was a national problem and was inspired to co-found Decoding Dyslexia Massachusetts (DDMA), part of a national network of grassroots groups in all 50 states. DDMA advocates that Massachusetts accept the definition of dyslexia used by both the National Institute of Child Health and Human Development (NICHD) and the International Dyslexia Association (IDA). Legislation has already passed in Connecticut, Maine, Indiana, Illinois and other states. A science-based definition would guide educators planning interventions and instruction for dyslexic students.
DDMA organized a forum at the State House May 28 to testify in support of legislation to redefine dyslexia and improve dyslexia education in the state.
During the forum, families recounted their personal experiences with public schools, noting that many schools do not recognize dyslexia or know how to design effective instruction. Experts such as neuroscientist Dr. Elizabeth Norton from the McGovern Institute of Brain Research at the Massachusetts Institute of Technology and Dr. Charles Haynes of The Speech, Language and Literacy Center of the Mass. General Hospital Institute of Health Professions also spoke to legislators about the science behind dyslexia. They emphasized dyslexia is a neurobiological disorder that children are born with, making early screening and intervention important.
“Dyslexia is not a simple ‘one size fits all’ learning disability,” explained Nelson. “The definition and early screening will provide educators with the needed guidance on this neurobiological learning disability and guide instruction based on dyslexia research – but without it, in our current system, time and money is spent on programs that will never help these kids.”
Nelson recommended that parents look for signs like trouble with rhyming, or trouble recalling a word correctly and accurately. Once in school, dyslexic students often have trouble learning the letter names and sounds. In addition, dyslexia is hereditary, so parents with a family history of reading difficulties should be extra vigilant.
“Trust your instincts,” advised Nelson. “You know your child best. If you believe something is hindering your child’s reading abilities, educate yourself about dyslexia. These children are as bright and able to learn as their peers.”
Decoding Dyslexia representatives were back at the State House for a hearing June 17 to support two bills – S312, proposed by Senator Barbara L’Italien, D-Andover, and H463, proposed by Representative Alice Peisch, D-Wellesley. Both bills are still being reviewed by the Joint Committee on Education.
Individuals or groups who have continued interest in advocacy may still submit written testimony on behalf of the bills to the chairs of the Education Committee: Senator Sonia Chang-Diaz, D-Boston, and Rep. Peisch.
For more information on dyslexia, visit www.decodingdyslexiama.org or the Decoding Dyslexia Massachusetts Facebook page.
Additional links:
The McGovern Institute For Brain Research, MIT Department of Brain and Cognitive Sciences, Gabrieli Lab, http://mcgovern.mit.edu/
The Gaab Lab at Boston Children’s Hospital
Children’s Dyslexia Centers, Inc | www.childrensdyslexiacenters.org
The International Dyslexia Association | www.eida.org
National Center for Learning Disabilities | www.ncld.org
The International Dyslexia Association Website www.eida.org
