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Thursday, June 12, 2014

Interview with Judith and Carson Graves: Authors of "Parents Have the Power to Make Special Education Work"

From SpecialNeedsBookReview.com

By Lorna d'Entremont
June 5, 2014

The special needs community should be pleased to learn about Parents Have the Power to Make Special Education Work: An Insider Guide by Judith Canty Graves and Carson Graves. This book was published in January, 2014 by Jessica Kingsley.

The authors wrote this parent-to-parent guide after spending fifteen years in special education with their son, and now they are trying to help other parents avoid the problems they encountered.

The team at Special Needs Book Review thanks Mr. and Mrs. Graves for their guest post introducing their book and now for this interview.

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Lorna: Congratulations on your book, Parents Have the Power to Make Special Education Work! I saw on your web site under “Events” that you have presented your book to various groups. Tell us about these events and what message(s) do you try to bring across.

The Graves: When we give a presentation, we like to speak for approximately half an hour and then have an extended question and answer session. We have found that these sessions can get quite animated and last for as long as an hour as parents ask about specific topics or situations that directly concern them and that we might not have covered in the formal part of our presentation. The nice thing about these discussions is that often other parents join in with their own answers and add additional information and ideas.

The message in our presentations is one of parent empowerment. During our years in special education we learned that parents are in the best position to understand both their child’s unique needs and their child’s entire educational history. School personnel might know about a specific area of special education, but only the parents are in the position to see the “big picture."

It is imperative for the parents to know what their child’s rights are and what the law expects from the school because sometimes school personnel don’t know. Knowledge, as they say, is power.

Lorna: Your book is written from the experience you gained from the fifteen years your son spent in the school system. Tell us some of the challenges with the school system you had to overcome to get the support your son needed.

Carson Graves and Judith Canty Graves
The Graves: The biggest challenge that we faced was the fact that schools are bureaucracies, often more focused on their budgets than the needs of their students. We did encounter many dedicated people working in the system, but their hands were tied by a school culture in which everyone knows his or her place and advocating for costly services for a student who may need them is discouraged.

We also had IEP goals that were vague and unmeasurable, which led to services that were not effective.

Another challenge was our own ignorance of the law and our son’s rights under the law. When we started in special education many years ago, there was very little information for parents. The book we have written is the book we needed, and we are hoping it will help parents today as much as it would have helped us back then.

Lorna: What are some of the topics covered in your 192-page guide book? What comments have you been receiving about your book that has made all the work worthwhile?

The Graves: We begin with an overview of the special education cycle, from initial eligibility through three-year reevaluations. Then we cover the people that parents typically encounter in their path through special education, such as school personnel, school specialists, and outside professionals.

We also write about school evaluations, IEPs, how to create effective IEP goals, Team meetings, high school graduation, and the transition from school to adult life.

In addition, we also discuss topics that aren’t usually covered by most books on special education, such as the pervasive problem of conflicts of interest both inside and outside the school system and what parents should know about them.

Other important topics that we cover are what parents need to understand about school evaluations, the importance of an accurate diagnosis for their child, and how to match the service delivery grid of the IEP to their child’s IEP goals.

Throughout the book we illustrate our points with examples taken from our own experience and quote from actual school evaluations and IEPs.

The feedback for the book has been very positive. Parents are grateful for information in a peer-to-peer format that uses familiar language and expresses parental concerns in a manner that they are comfortable with. Helping other parents is what has made all the work we put into our book worthwhile for us.

Lorna: There is a lot written on placing children with special needs in inclusive classrooms or in inclusive schools where every activity of their school day is spent with his peers. What experience or feelings do you have with inclusive schools/classrooms?

The Graves: Every child and every situation is unique, which is the point of special education and the focus of the Individuals With Disabilities Education Act (IDEA). Some children with disabilities flourish in an inclusive (mainstream) classroom or school, while others might need a different classroom setting or more specialized instruction in smaller groups due to their particular needs.

Our experience was that a completely mainstream setting did not always work for our son. IDEA, in fact, is very clear that Teams must consider “a continuum of alternate placements” when considering the location where a child’s education takes place, and that is not always an inclusive classroom or school.

What should be avoided is the “one-size-fits-all” mainstreaming approach that too many schools are using today as a cost-saving measure. That goes against the spirit and the letter of the law.

Lorna: Now parents can simply go online to find information and even support from different web sites. What is your opinion of support groups where folks meet in person and help each other? Is there still a need for such groups?

The Graves: We think both online and in-person support groups are helpful. When we started in special education in the early 1990s, there was no world wide web, no search engines, and no social media where you could find information and connect with like-minded communities of parents. We felt alone and confused, so we were grateful for the few in-person groups we could attend. Now, with the internet, there is a wealth of information and opportunities to connect with other parents electronically.

A benefit of an in-person group is the chance to bring in speakers with a variety of specialities who can present useful information. Parent advisory committees (called “SEPACs” in Masachusetts), which most school districts are required to sponsor for parents with children in special education, are a good example.

Online groups like the Special Needs Book Review can reach a larger geographic area and are especially helpful to parents in isolated locations by finding and highlighting useful sources of information.

Lorna: You emphasize that parents are the only constant advocates for their child. Please elaborate.

The Graves: Parents need to appreciate their role as the only permanent members of their child’s IEP Team. They are the only ones with the ability to see the “big picture” of their child’s progress from elementary through high school. New school personnel will join the Team each fall and leave it the following spring, so parents need to understand that their Team is constantly changing. This makes it imperative that parents be active advocates and not passive observers of their child’s education and social development. This is a serious job, because time is important in special education.

We discovered that every single year of our son’s education mattered. If there are too many delays in providing appropriate services or placement, children in special education run the risk of not getting the education they deserve and that the law requires they receive. Being your child’s advocate is an enormous responsibility, but it is ultimately one of the most rewarding jobs you will ever have.

Lorna: Thank you so much for your guest post and now for this interview. In closing, what advice do you have for parents with teens that have special needs as they get closer to the end of their school years?

The Graves: The most important part of a child’s high school education is planning for the transition from school to a productive adult life. IDEA requires that no later than the IEP in effect on their child’s 16th birthday (in many states, it is the 14th birthday) there must be a discussion of the transition goals that have to be completed before high school graduation and the termination of special education services.

"The most important part of a child’s high school education is planning for the transition from school to a productive adult life..."

The planning might be as simple as outlining a course of study that will prepare a student for higher education. In other situations, the planning might involve vocational assessments or independent living skills assessments, which should be performed by the school or contracted out by the school.

Regardless, the school is responsible for adequately preparing a student for a productive adult life before it can award a diploma and end special education services. Otherwise, services must continue until the child reaches a mandatory age set by state special education law. In Massachusetts, that age is 22 years.

We want to thank Lorna d’Entremont and the Special Needs Book Review for allowing us this opportunity to communicate with other parents going though special education.

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