Tag Archives: International Special Education

Special Education Advocacy and the Quality of Life

beach-22 textThere comes a moment when you realize that what you’re advocating for is more than just accommodations. You’re really advocating for someone’s quality of life. That’s the moment you realize you won’t give up.

We recently read this quote on Facebook from the Dyslexia Training Institute and immediately recognized how true it is. We experienced such a moment when our son was in elementary school and was struggling to read and demonstrate other essential academic skills at grade level. We knew that advocating for an appropriate education for him, which began in preschool, would have to go beyond just the few services and accommodations listed in his IEP. Even though his adult years were far into the future, we intuitively knew that our efforts to improve his education then were actually building a foundation for his future.

The basic concept of the federal special education law, IDEA, is that an appropriate education is the key to a productive life. Mastering academic skills opens many doors for learning and fulfilling dreams, which in turn makes for a productive citizen. This simple concept is a true and worthy ideal for a society that places value on each and every one of its members.

Sadly, there is an imperfect relationship between our society’s ideals and our society’s practices. In special education, the ideal, expressed in the concept of the Individualized Education Program, is that every child should receive an individualized education appropriate to that child’s abilities. The reality is that all too often schools offer these students only a “one size fits all” program that ends up fitting none of them.

We witnessed this reality over and over during our fifteen years in the special education system. We know of many young people who were on IEPs in public schools and received diplomas, only to be unprepared for life after high school graduation. Those who have made significant progress since graduation had parents who were strong advocates throughout their primary and secondary education.

We all want our children to feel satisfied with school, excited about learning, and happy to apply what they have learned. The goal is for them to become independent and productive adults. An education that prepares a student for life after high school, whether it is attending college or technical school, or living and working independently, contributes to that quality of life.

The bottom line is that your child’s future depends on your advocacy now, especially if your child is in special education. You may feel it is the school’s job to handle your child’s education and you shouldn’t have to be involved. We know from our experience that you must be fully involved.

We knew that despite the extra work of being our son’s advocates, we had to maximize our efforts. We found independent professionals who guided us with testing, accurate information, and critical support. When it became clear that the public school was not providing an appropriate education, we placed our son in a more appropriate school and sought reimbursement to hold our school district accountable for providing the free appropriate education they were required to give him by federal and state law.

All of this was up to us. It was not easy, but we never stopped trying. The result was that our son went from being a struggling student in elementary school to becoming a college graduate. This has had a major impact on his opportunities for the future.

Bear this in mind as you progress through the school year. In every Team meeting, every evaluation, and every teacher conference, you’re really advocating for your child’s future. Don’t ever give up!

Judith Canty Graves and Carson Graves

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A Parent Journal

journalAs a parent, you have an important tool right at your fingertips to help you in your special education experience. This simple tool, developed over time, can be one of your greatest assets in advocating for your child. It is your parent journal in which you record your impressions and descriptions of your child’s behaviors, moods, struggles, achievements, and any other notable information.

You may not think that day to day life is worth recording or perhaps you think you are too busy to find the time to write journal entries. We want to tell you that this is valuable information that grows in importance over time.

Why is a Journal Important?

Remember the scene in Thornton Wilder’s play Our Town in which the main character Emily goes back in time to see her twelve year old self at home with her parents for one day? It is a poignant scene of an adult woman seeing herself as a twelve year old girl with her parents. She notices how young everyone is and all the details in her childhood home. She sees everything with fresh eyes, from a different perspective provided by the passage of time. What was absolutely ordinary and common years ago suddenly takes on a new meaning and significance for her. Your parent journal can do the same for you.

How We Started

We began our journal when our son started special education in preschool. Initially we just recorded details of phone calls and letters related to school, but as time went by we started recording the details of everyday life: what foods our son ate and his reactions to them, his activities, and how he slept. At an early age he had food allergies, so keeping a journal was essential to pinpoint his sensitivities to certain foods.

The journal evolved as he started elementary school, with details about his difficulties learning to read and write. We recorded our impressions of how schoolwork was going, parent-teacher conferences, and Team meetings. The more we became involved in special education, the more we wrote, since there were so many details to keep track of.

Over time, keeping our journal became a habit. We wrote detailed notes and impressions immediately after Team meetings and phone calls with school personnel. We recorded our son’s mood after he came home from school each day. We followed up these experiences with letters to school personnel. Writing factual notes became an important part of the special education experience for us. By middle school our entries revealed that school personnel were giving us conflicting information about our son’s school experience and helped us understand that his placement was not appropriate.

How We Used Our Journal

When we began to work with a lawyer to seek reimbursement for a more appropriate placement, she was able to use the facts and dates to strengthen our case. Through her, we began to appreciate the importance of the “trail of paper” we had created. When our school district served us a discovery request we had the information they requested at our finger tips. Notes that we had taken years earlier suddenly became significant and had a new meaning, just like Emily’s experience in Our Town.

For example, in third grade our school had sent us reports saying how well our son was doing, but in our journal we had recorded details of his frustration at not being able to read at grade level. We could clearly see his struggles with school assignments. He was not excelling in all academic areas as the school had claimed. Testing by professionals independent of our school district confirmed what we had written. Our journal entries were an important part of our case.

Your child will change over the years, but change can happen gradually. Sometimes weeks or months go by and you feel like nothing different has happened. But growth is always happening, so be aware, observe your child, and start recording the details of his or her life. You may feel too busy, but if you make it a practice to spend even five minutes a day recording your impressions, either in writing or in a recording, over time you will see details emerge that will pay big dividends in the future as you advocate for your child.

Judith Canty Graves and Carson Graves

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Special Education From an International Perspective

Star Island- 8 textIn the fall of 2014, professor Sarah J. Denman of the University of Queensland in Brisbane, Australia, wrote an article for the International Journal of Disability in which she reviewed our book in the context of special education around the world. You can read an abstract of Professor Denman’s review of our book.

Titled “Parents as Experts on Children with Disabilities: Being Prepared for the Long-Haul,” Ms. Denman used Parents Have the Power to Make Special Education Work to compare the resources parents have in other countries to our descriptions of special education in the United States.

We Are Not Alone

The article brings together literature from many international sources and cites studies from Europe, Australia, and New Zealand, as well as North America, describing the development of state and federal laws regarding the education of children with disabilities. This was very interesting for us, as our experience with special education is limited to the United States.

For example, it was a revelation that special education laws internationally closely parallel those in the United States, with an emphasis on inclusion in the least restrictive environment, IEP meetings, and the recurring cycle of special education, from referral, evaluation, meetings, goals and services, progress reports, yearly review, and re-evaluation. As the article points out: “This cycle is shared by parents regardless of their location in the world.”

Clearly, those of us in the U.S. have much to share with and learn from other parents around the world.

Parents as Experts

Professor Denman writes “A recurring theme in Parents Have the Power to Make Special Education Work is the role of parents as active participants, advocates, learners, and listeners within the special education experience…” It is this observation around which her essay is built, as she cites numerous articles published by academic researchers on special education techniques, but points out that few of these studies “extended to include a practical guide for parents.”

In fact, Ms. Denman believes that special education “professionals” have historically disregarded the value of parent participation, writing that: “Previously, the role of parents as `experts’ on their child with a disability was not widely accepted…” She feels that this is at least partly because before the publication of our book, there were few “…easy-to-read resources available for parents wanting to define and extend their role in the special education system.” By contrast, she writes, that our book is “a practical guide of the special education process…”

Encouragement for the Long-Haul

It is no accident that the essay’s subtitle is “Being Prepared for the Long-Haul.” Special education is the proverbial marathon, and parents must be psychologically prepared for the years ahead. It was therefore pleasing to us that the article ends with a mention of our Afterword in which we describe our son’s success in ultimately obtaining a college degree. “This Afterword may serve as an encouragement to parents who may not be confident of their ability in the demanding special education process ahead of them,” she writes.

In this one sentence, professor Denman has written as good a summary of our intentions as we can imagine, and it informs all of our efforts in writing our book and maintaining this blog. We hope that what we have written has encouraged you.

Judith Canty Graves and Carson Graves

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