Pamela Guest is the founder and chief editor of IEP Magazine. “IEP” stands for “Individualized Education Program/Plan.” The IEP is the document developed for each public school child who needs special education. Pamela’s mission is to bring attention to inequities, advocate for change where it is needed, and help parents with the information and knowledge they need to effectively advocate for their children in the public school system.
More importantly, Pamela is the parent of a dyslexic child and struggled throughout her son’s education. She had to learn the ins and outs of the system on her own with little to no support. As my path crossed hers on our journey to help others facing the steep dyslexia hike, our common goals brought us together. Education is her passion and this is my interview with her.
Q. What do you think is the most pressing issue related to special education in schools today?
A. The issues and challenges faced by struggling readers, and more specifically students with dyslexia, impact up to one in five students in every classroom. According to NIH (National Institutes of Health), dyslexia affects 80 to 90 percent of all individuals identified as learning disabled—and dyslexics make up the largest group of school-aged children who receive special education services. Dyslexia is identifiable with 92 percent accuracy at ages 5 ½ to 6 ½, and when it is identified early, the reading failure that is associated with it is highly preventable through direct, explicit instruction in phonemic awareness.
The problem is that there is no systematic process in place to ensure that students with dyslexia are identified early or even at all, and there is no consistent method of intervention for those few who are identified. In October 2015, the U.S. Office of Special Education and Rehabilitative Services issued a “Dear Colleagues” letter with guidelines to local and state education agencies urging school systems to say and use the words “dyslexia,” “dysgraphia,” and “dyscalculia.” Yet most school systems have still not taken action to correct the misinformed policies and procedures that have resulted in reluctance to address the problem. In an arena where labeling students has been controversial, one might ask why there is an organized push to say the words “dyslexia,” “dysgraphia,” and “dyscalculia.” These words are so important because they drive appropriate instruction for those students who need it.
Without sweeping changes to the methods used for teaching students to read and for training educators who provide services to these students, reading failure will persist and continue to impact outcomes for a large group of students. Of children who display reading struggles in the first grade, 74 percent will be poor readers when they get to high school and into adulthood unless they receive informed and explicit instruction.
Reading failure has far-reaching impacts on society, including the costs of underemployment, remedial education and workforce training, and welfare. Eighty-five percent of all juveniles who interface with the juvenile court system are functionally illiterate. Low literacy is so strongly related to crime that the phenomenon has been labeled the “School to Prison Pipeline.” That 70 percent of prisoners fall into the lowest two levels of reading proficiency is evidence of the relationship.
Q. What inspired you to become involved in efforts to address this issue and any others?
A. My younger son struggled with spelling, reading comprehension, and math throughout his school years. I had often inquired whether he might be dyslexic but my inquiries were repeatedly dismissed and no effort was ever made to investigate my suspicions. I had confidence in my son’s educators as professionals in their fields and I proceeded to push him harder and urged him to apply himself to reach the levels of success that his educators implied he was capable of achieving without intervention. They were wrong.
Unfortunately, Dayne’s dyslexia was not identified until two months before high school graduation. I was overcome with feelings of guilt that I hadn’t pushed harder to confirm my suspicion; angry that my intelligent and capable son had struggled tremendously all those years without adequate support; and frustrated that once his learning difference had been identified as dyslexia, his educators knew very little about what to do to help him. His confidence and self-worth suffered terribly as he was repeatedly told that he wasn’t trying hard enough, and when he did try harder and worked earnestly to apply himself, there was little to no improvement. If I had known more about the processes and laws that protect students with learning disabilities and the processes that are outlined to help parents to ensure their children receive a Free and Appropriate Public Education (FAPE), I’d have probably acted more diligently and confidently to get my son identified earlier and to fight for the proper services.
I’ve decided to make every effort I can to help other parents understand the process and be better prepared to advocate for their children. In addition to my work with advocacy groups and as a consultant to parents, I designed IEP Magazine to be an easy-to-use reference and guide that parents can refer to as needed, share with others, and most of all, read without feeling overwhelmed by the information. I want the magazine to provide a positive and uplifting venue for sharing information and celebrating the unique abilities of students who just happen to learn differently.
Q. What concerns you the most regarding the special-education-student’s needs and services?
A. Services and approaches can vary from one system to another and even from one school to another within the same system. Working with groups like DDMD (Decoding Dyslexia Maryland) and my local Special Education Citizens’ Advisory Council (SECAC), I’ve heard stories about the inconsistencies that parents face throughout school systems. Granted every student’s needs are unique and the approaches should be different, but basic services, guidance, and information should be consistent throughout systems. A parent shouldn’t have to face uncertainty about a child’s IEP if the child moves from one school to another either in the same district or across state or district lines, and the services received shouldn’t vary in different environments.
Another concern highlighted by my own experiences is that parents don’t have access to directed, specific, and simplified resources to help them advocate for their children. Sure, there is a load of information out there and school systems make much of it available to parents through resource centers but availability is not enough for these parents and here’s why:
- Many parents don’t know how to identify/associate a serviceable learning difference/disability when they see their child struggling, so they don’t seek help or they don’t know what kind of help they need.
- These are parents who more than likely already have more on their plates than they can handle and don’t have time to muddle through tons of new information and unfamiliar resources.
- Since heredity is big factor for many learning differences, parents often share a similar neurodiversity with their children that can make the effort to research and advocate even more daunting.
Parents need consistent, reliable direction from school systems they trust to tell them what will result in the best outcomes for their children.
Q. How would you describe the ideal classroom/education environment?
A. Ideally, all educators, administrators, parents, and other educational support personnel would operate with the guiding paradigm that all children can learn and that all students matter. Instead of focusing the bulk of resources and attention on the high achievers alone, systems would target comparable resources to ensure that strugglers receive the services and appropriate interventions to make reasonable progress toward learning goals. In the ideal education environment, the growing rate of reading failure that exists in the United States would be treated as a crisis and be given the urgent and immediate attention it deserves.
Q. Do you think that ideal is achievable any time soon?
A. Sure, look at the example and model created by the Upper Arlington School District in Ohio. In 2010 a group of parents, frustrated by their school system’s repeated dismissal and denial of their children’s learning disabilities (specifically dyslexia) and by a refusal to provide appropriate services, filed a joint complaint against the system and won. The system was found guilty of all allegations brought in the complaint, including failure to test children and misleading parents. The system is under new leadership now and has completely turned around. The number of struggling readers at the elementary grade levels has dropped dramatically. Parents and educators all have the same commitment to student achievement and success, and the students are the winners. The community’s mantra is now “every child can learn to read.”
Q. What do you think could change about the public school system to make children’s lives better?
A. I believe there should be more encouragement of each child’s individual gifts and talents and less urgency to have them fit the cookie-cutter model of what success and the future should look like for each child.
Q. Tell me about Pamela Guest as a mother and founder of the IEP Magazine (or another title you would like to have).
A. Through the years, when I was so consumed with my efforts to make sure my children were supported and moving toward personal success with confidence, it was hard for me to identify my own worth gauged in any way other than how well they were progressing. It was an exhausting job to keep up with each of their very different educational challenges, but it was even more taxing trying to get educators to be consistent in the support they offered day to day. I supported my older son’s education from preschool through college, ensuring that he had what he needed to learn the way his brain best processed information. I sometimes felt cheated because I didn’t have the time to commit to my own career development the way I thought I should.
What I didn’t realize was that I was receiving an education worth more than any masters or doctoral program I could have entered. Each moment I spent working with my differently-abled children or dealing with the school system that wasn’t servicing them adequately prepared me to be able to help others later. What I learned during those years of hard work and dedication has transformed me. I am convinced that when provided the appropriate services and support all children can make reasonable progress in the public school system.
I created IEP Magazine so other parents don’t have to reinvent the wheel the way I had to as I stumbled and sifted through the overwhelming amounts of documentation and resources that were available. I often longed for a go-to resource that simplified the information and gave me a foundation of understanding that I could depend on. I want to do whatever I can to help all children achieve their life goals with their confidence and self-esteem intact.
We can all relate to Pamela’s life, struggles and dreams. Thank you, Pamela, for sharing your story with us.
Click here for more information on Jess and her work.
Cigdem Knebel is the founder of Simple Words Books, a parent of a dyslexic child, and author of Sam Is Stuck, a chapter book for young dyslexics. She believes that all children love to read—they just need to find that right book for them.
Her mission is to help young dyslexics, and reluctant and early readers with fluency, comprehension and, most importantly, self-confidence. She accomplishes this by publishing fiction books, and reading and phonics practice resources with the skills of young dyslexics in mind.