Author Archives: Carson Graves

The Tragedy of an Inappropriate Education

Education is the foundation of a productive and fulfilling life. Education teaches us to read, think, process, and analyze information. When taught these skills, individuals can grow and develop into contributing members of society. We can all agree that this is the goal of an appropriate education.

But when is an education “appropriate,” and who decides what is appropriate? For many children without disabilities, a general education curriculum is appropriate. For children with disabilities, deciding what constitutes an appropriate education is a critical question. School districts and families grapple with this question all the time.

The Goal of Special Education

The federal law that defines special education, the Individuals with Disabilities Education Act (IDEA), lists 14 qualifying disabilities that entitle a child to a Free Appropriate Public Education (FAPE). Once deemed eligible under IDEA, the law states that the child’s education must be “designed to meet their unique needs and prepare them for further education, employment and independent living.” [20 U.S.C. § 1400 (d)(1)(B)] In other words, the law is outcome based with a focus on the future life of the student as a functioning member of society.

This goal, however, is frequently thwarted by school districts that, for various reasons, do not always have a child’s education as their primary goal. We warn parents in our articles and lectures that parents and schools have different perspectives. Most parents are focused on their child’s future (“Will my child be able to go to college?” or “Can my adult child live independently from me?”), while schools are focused on budget costs and the current year’s IEP goals. Unless parents understand these different perspectives, they can lead to misunderstanding and frustration for the parents and an inappropriate education for the child.

FAPE is More Than Academic

The elementary school years are foundational. Students must first learn to read so they can read to learn. When the basic skills of education are not learned in a timely matter, a gap grows between the students who have these skills and those who don’t. For students who lag behind, there is a social and emotional toll, not just an academic one. Self-esteem can plummet, and depression and anxiety can set in.

IDEA, as clarified by court decisions, requires schools to address these social/emotional issues before the school can demonstrate that a student is making effective progress. Many state laws are even more specific in this regard. Massachusetts, for example, requires that a student have “documented growth in the acquisition of knowledge and skills, including social/emotional development.” [603 CMR § 28.02(17)] The law is clear, an appropriate education means more than simply academic success.

School Tactics to Deny FAPE

Sadly, we have seen too many school districts focus on their budget more than their obligation to provide a free and appropriate public education. IDEA does not permit teachers and administrators to consider cost as a reason for denying a student needed services. So instead, these schools rely on diversionary tactics, such as minimizing parent concerns, not including parents in decisions, withholding information, delaying or offering less expensive and inadequate services (such as Response to Intervention) to keep their costs down.

Schools also know that when parents are exhausted and struggling for answers, and the school gives them progress reports with statements like the ones we have seen: “It has been a pleasure working with this enthusiastic and engaging youngster,” and “She is a polite and hard-working adolescent,” these positive sounding but ultimately meaningless reassurances are what the parents focus on rather than the reality of their child’s struggle.

As a last resort, some schools just refuse to provide needed services and essentially dare parents to file for a hearing with their state’s department of education, knowing that only a small percentage of parents will actually do so.

These tactics are successful when parents are unaware of their legal rights and accept them without question.

When School Tactics Fail, Fight the Parents

For the parents who do know their legal rights, sometimes their only option is to hire a lawyer to force a non-compliant school district to follow the state and federal laws. Then the district might be willing to pay thousands of dollars in legal fees to fight those parents rather than put the money into providing the services that a child is entitled to. In our book we document how one school district in Pennsylvania spent $329,084 defending itself against what was ultimately a $10,000 judgement.

And the Results…

Time passes. Each school year goes quickly. Suddenly a child is a teenager, facing the prospect of life beyond high school without the supports of special education. Since the school’s obligation to a student ends once that student accepts a high school diploma, some schools try to finish their obligation as quickly as possible, even if that student is not ready to graduate.

This approach ignores IDEA’s requirement of preparing a student “for further education, employment and independent living.” We experienced this tactic first hand in addition to reading multiple hearing decisions where schools have tried to force a student to graduate without adequate preparation.

Then What?

Research by the National Center on Educational Outcomes indicates that 80 to 85 percent of students with disabilities have the cognitive ability to achieve the same state academic standards as their non-disabled peers. Yet, according to the National Longitudinal Transition Study, only 7.6 percent of these students attend a four-year college compared to almost 30 percent of their peers without disabilities. Likewise, the Government Accountability Office (GAO) has found that the unemployment rate for young adults with disabilities is twice that of the general population.

The Dropout-to-Prison Pipeline… and Worse

In 2016, The Houston Chronicle ran a series of articles by investigative reporter Brian Rosenthal on special education in Texas. He reported that officials from the Texas Education Agency, without any data to support their decision, dramatically reduced the percentage of students in the state’s special education programs in an apparent attempt to reduce costs. The series concluded that thousands of vulnerable students with qualifying disabilities were denied special education services.

So what happens to these students who are denied an appropriate education? For those whose parents do not have the ability to home school or pay for expensive private schools, they languish in general education classrooms without the proper help. When these students fall behind, they often experience depression and exhibit behavior problems. From there, it is a short distance to suspensions and expulsions. According to the Chronicle, “Some [students] have even entered the criminal justice system or otherwise required intensive adult services that cost far more than special education.”

“What we’re looking at with these kids who don’t get services… is continued demoralization,” says David Anderson of the Child Mind Institute. This leads these students “to give up and become part of the `dropout-to-prison pipeline.'” Even worse, a member of the Texas Behavioral Health Advisory Committee acknowledges that “students have killed themselves because nobody was willing to pay attention.”

The personal cost of of living an unfulfilled and unproductive life is dire.

Write Your Congressman!

When Congress passed the first special education law in 1975, it authorized the Federal Government to pay for 40% of all special education costs. Unfortunately, Congress has never funded more than 20% of those costs and often less. This means that local communities must cover the rest. Property taxes rise and residents react, resulting in a backlash against students with disabilities. We have read many complaints over the years written by parents who feel that education is some sort of zero-sum game in which students in special education receive privileges that take opportunities away from their children in general education.

This point of view is shortsighted and misguided, however. If special education costs seem high, compare them to the cost of not providing an appropriate education. An adult who is not able to function productively requires disability insurance, food assistance, and Medicaid, among other costs, for the remainder of his or her adult life. If those who advocate for lower taxes and smaller government won’t acknowledge society’s moral and ethical obligation to its most vulnerable members, then they should at least consider the monetary cost.

Instead of complaining about the students in special education, all parents should write their legislative leaders to request proper funding for IDEA as Congress originally intended. Society has an obligation to educate children of all abilities. When schools don’t provide an appropriate education, the outcome can be tragic, and we collectively suffer in the long run.

Judith Canty Graves and Carson Graves

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Avoid “Feel Good” Goals

In examining hundreds of IEP goals, we have noticed that too many just describe hoped-for outcomes and not measurable results. These goals tend to be vague statements of what the IEP Team would like the student to be rather than define a path toward a specific accomplishment. We call these “feel good” goals because they describe achievements that we all want for our children, but they don’t provide guidance as to how the child is going to get there.

Vague Goals vs. Specific Goals

Vague goals, like “[Student] will increase his homework production,” “demonstrate appropriate behavior in the classroom,” or “increase her study skill techniques,” don’t indicate how the goal will be measured (if it can be measured at all), who will assist the student in achieving the goal, or how anyone will even know if the goal has been reached.

Even though these goals may sound good, at the end of the year there will be no concrete evidence to indicate if they have been accomplished. There may even be the temptation to think that the goal has been partially or even fully met, when in fact the opposite might be true.

Goals Gone Wrong

The following are actual goals we have found in IEPs. Only the student’s name has been removed, replaced by [student], and in a few cases bad grammar has been corrected. Otherwise, they are verbatim.

[Student] will become more consistent in completing his required academic work.

[Student] will continue to maintain her independence in the high school setting.

[Student] will demonstrate skills in relaxing to reduce body and mental tension. (One of the benchmarks says that the student will “use sensory diet techniques for achieving body and thought relaxation.”)

[Student] will consistently exhibit responsible behavior in the areas of classroom participation and assignment completion.

[Student] will work to improve the thoroughness of his daily preparation.

While it is easy to see unintended humor in many of these goals, it is worth noting that in just about every case these statements describe what parents and students want from their special education experience. Instead of being goals, however, these statements only project the results of successfully achieving a goal. We have seen these kind of feel good statements appear in far too many IEPs masquerading as goals.

Unmeasurable “Progress”

Without providing any direction, it is almost impossible to determine when, or even if, these feel good goals can ever be achieved in a realistic fashion. The result is that they sometimes end up repeating year after year without any end in sight. This can lead to a lack of motivation, both on the part of the student, who doesn’t have any identifiable path to follow, and school personnel, who don’t have any way to measure progress.

One of our son’s goals for written language repeated word for word in every IEP from 3rd through 7th grades. We routinely got reports that he was making “tremendous progress,” “excellent progress,” or “outstanding progress” toward achieving this goal (these phrases seemed to appear in rotation), yet we never questioned the goal. In hindsight, we now see that this goal was too vague and unmeasurable to be achieved. In short, it was nothing but a feel good goal.

What Makes a Goal Measurable?

The opposite of a feel good goal is one that has the following characteristics:*

  1. It contains a method for measuring whether the goal has been achieved.
  2. The criteria for measuring progress are clearly defined in the goal and do not require any information other than what is contained in the description of the goal.
  3. The measurement can be validated by multiple observers. For example, if two different observers measure the progress of a goal using the criteria described in the goal, they would independently come to the same conclusion.
  4. It is possible to determine how much progress a student has made toward attaining the goal at any time, such as in a quarterly report.

Many of the IEP goals we have seen provide little of this information. Most are impossibly vague, contain no standards by which anyone could determine if the goal was ever achieved, and perversely, often place the responsibility for achieving the goal completely on the student.

What You Can Do

Remember that the IEP is created by a Team that includes you, the parent. Your voice is an important part in any discussion about your child’s goals. Use your voice by assisting the Team in developing goals that are measurable, time-limited, and specific about who is responsible for seeing that the goals are met.

  • Make sure that the current performance level for each goal accurately describes what your child is capable of doing. It should include the most recent testing data (including independent evaluation results) in that skill area, especially the grade level equivalent for your child’s current performance.
  • Have each goal specify valid ways of measuring your child’s progress. Include details for teachers and other service providers to notice and record in their observations.
  • Make sure that all goals are appropriately coordinated with the service delivery grid. The grid should allow ample time for every service. Also notice what type of professional will provide the service. If no one or just “sped staff” is listed, ask for more detail about that person’s role and qualifications. Pay attention to the location, start, and end dates of the service.
  • Have the information in the service delivery grid written into the description of the goal. The grid often appears pages after the goal in the IEP where it can be overlooked by both you and the service providers. The duplication serves to remind everyone that the most important part of a goal is achieving it.

Your participation in the IEP process is critical to ensure that all your child’s goals are realistic, measurable, and come with adequate services to achieve them. This is your child’s right in getting the appropriate education that the law guarantees.

Judith Canty Graves and Carson Graves

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* These four characteristics are adapted from Barbara Batemen’s and Cynthia Herr’s excellent book: Writing Measurable IEP Goals and Objectives.

Have a Business Relationship With Your Team, Not an Emotional One

craggy-clouds-8-textYou should always strive to treat IEP meetings as if they were business negotiations, not a friendly get together or a hostile confrontation. In an earlier article we wrote about the etiquette of dealing with your Team members. One caution we wrote about in particular, that parents should always maintain a courteous demeanor toward their Team even if that courtesy was not reciprocated, seemed to cause controversy among some parent groups on the Internet. Many wrote complaining that we were being too easy on teachers and that they felt entitled to vent their frustration at Team meetings when they thought necessary services were being denied.

Team Members Are Not Your Friends or Your Enemies

Displaying common courtesy, however, should not prevent you from critically questioning the Team’s decisions regarding your child’s education and examining your child’s IEP as if it were any other business or legal document before you sign off on it. In fact, your child’s IEP is a legal document.

This was something that we did not understand during our early years in special education. We felt so grateful for the help we were told our son was getting, that we regarded our school Team members as friends rather than as professionals. We would give Team members home baked bread for the holidays and send thank you notes each year at the end of the school term.

In one particularly egregious example of being overly familiar, we began our fifth grade IEP review with the announcement: “It’s so great to see you all at this meeting. It feels like a family reunion.” This created a warm and fuzzy beginning to the meeting, but it also signaled to the Team that we were trusting and not going to critically question their decisions. The result of our complacency was that our son went into the sixth grade without adequate supports and had a disastrous year. This was the result of what we have come to call “blind trust,” and it is something that we warn parents against.

The Problem with Blind Trust

Our experience is an example of what can happen with blind trust. We had not questioned the school staff because we assumed they always made decisions in our son’s best interest. We were wrong. Over the next difficult year we were fortunate to find Pete and Pam Wright’s excellent book, From Emotions to Advocacy. Reading it made us aware of the reality of special education in the public schools: budget constraints, a school culture that places a premium on job security over the needs of students, and invisible Team members who make decisions outside of the Team meetings. This book was a major wakeup call.

We then hired an advocate who discovered many procedural violations in our son’s educational history. Of course we were angry and upset. We focused our frustration and energy, however, on learning about the state and federal special education laws and understanding the rights they gave us. We learned to regard our Team members in a more business-like manner as we worked to collaborate with them about our son’s educational needs. We also focused on the details of school documents with a new understanding. We always remained polite with our Team, but we were no longer overly friendly.

As our advocate helped us focus on our rights, we realized that this knowledge is power, so we put our energy into strategy and negotiation, and steered away from having an adversarial relationship. Finally, we learned that for many school districts, special education is a calculated business, something we write about in the Introduction of our book.

A New Awareness

One of our discoveries was that we learned that Team members are, first and foremost, school employees. Their bosses, the people who write their annual reviews and decide on the school budgets, regard special education as a business expense, even though the law is clear that services must be provided on the basis of need and not cost. Your Team members may be fond of you and your child, but they know that services cost money and they must act in accordance with the district’s budget. Parents are at a disadvantage when they don’t realize this agenda, which is never mentioned in Team meetings. The natural emotional ties parents feel toward their child makes it difficult to see that the Team decisions are ultimately business and not educational decisions.

What Parents Can Do

As hard as it may be, you need to understand the school’s business approach to special education. Here are some suggestions we have to help:

  • Learn to express your emotions outside of a Team meeting or in school correspondence. Realize that you can be firm and take a stand, but keep a cool head. Being polite with your Team members does not mean that you have to accept inappropriate behavior from them.
  • Study the federal law and your state’s law for special education. Understand your legal rights. You may be surprised at the rights the laws give you and your child, and even more surprised that school personnel generally do not know these laws as well as they should.
  • Realize that school districts regard special education as a business with budget constraints and a legal transaction for school personnel. Focus on advocacy and negotiation as you try to collaborate with your team.

Knowledge is power.

Judith Canty Graves and Carson Graves

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After the Diagnosis, Then What?

sunset-2-textParents who realize their child is struggling, who suspect something is amiss, will seek out the advice of a pediatrician, a psychologist, or perhaps another professional. At first, parents don’t want to notice that their child isn’t perfect. They may suppress their feelings, but eventually, if their child is not achieving the usual milestones, some professional they know may suggest testing. That person may diagnose a disability, which leads to the question: “Now what?”

Varied and Complex Reactions

Receiving a diagnosis of a learning disability or a developmental delay can be devastating and surprising news. Some parents deny that there is a problem and will not accept the diagnosis. Other embrace the diagnosis and research everything about it. Some will share it with other parents and some won’t.

The reasons for these varied reactions can be complex.

For some parents, a diagnosis of a disability brings out fear and shame. They refuse to let their school know about the diagnosis, believing that there is a stigma to having a child in special education. Fearing the label “disabled,” they refuse to explore the option of special education services, hoping their child will get by without additional help.

For other parents, a diagnosis brings a sense of relief. Once they understand what is behind their child’s issues, they can begin to plot a course of action to help their child more forward.

Grief, Disappointment, and Acceptance

For most parents, there is an initial grieving process. Their beliefs about their child may be challenged. What if their child won’t be able to go to college and achieve in a similar fashion to themselves? What if the diagnosis means a new way of life and a change of plans and expectations?

Grief and disappointment are common reactions.

Some parents even feel anger toward the professional who made the diagnosis. Others blame each other for being the cause of the disability. Fatigue sets in as parents struggle to understand what professionals are telling them.

Receiving a diagnosis for a child is a hard experience, but accepting the diagnosis can eventually lead to a positive outcome for your child.

Working Through the Confusion

Because there are a variety of diagnoses that a child can receive, the process becomes confusing. Parents hear terminology that they have never heard before and feel even more confused. People they have never met before will be delivering complicated news about their child. Many parents wonder if they can trust the opinion of a stranger who doesn’t know their child the way they do. Fortunately, there are things that parents can do to help them work through the confusion and put them on the road to becoming an advocate for their child’s education.

What You Can Do

  • Locate a Parent Training and Information Center: Each state in the United States has a federally funded Parent Training and Information Center. These centers can advise you of resources in your area. Go to The Yellow Pages for Kids at the Wrightslaw website to find a center near you.
  • Ask for a Referral to Special Education: Contact the special education department in your child’s school district to request assessments in all the areas in which you suspect a disability. As long as your request is in writing, schools must comply with your request within a specific timeline set by your state’s department of education.
  • Build a Team of Independent Professionals: Seek out independent experts who can do a comprehensive and objective assessment of your child’s special needs. Relying only on school testing can lead to a narrow view of your child, sometimes with important information missing.
  • Understand the Terminology: Parents will hear many new terms for different disabilities such as Attention Deficit Hyperactivity Disorder, Nonverbal Learning Disability, Cerebral Palsy, Tourette’s Syndrome, or Autism Spectrum Disorder. Be sure to ask the professional who gives you the diagnosis to be clear and explain the term so you can understand it.
  • Locate Parent Support Groups: Seek out groups of parents who have children with disabilities. Other parents can be a great source of trusted information. Find local groups of national organizations that are pertinent to your child’s disability, such as such as CHADD or the Autism Society.
  • Do What You Can in the Moment: We have discovered that mindful living is especially helpful when you have a child with special needs. It is pointless to project many years into the future and worry about your child’s well-being then. It is easier and healthier to focus on what you can do today, this week, or this month to help your child.
  • Remember That You Are Not Alone: Thousands of parents have children who get a diagnosis of special needs every year. Consider family members, friends, neighbors, and clergy as sources of support. If you belong to a faith community, ask if there is a special needs ministry. Many churches have them to create accepting communities for children and teens with special needs.

Judith Canty Graves and Carson Graves

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A New Kind of Book Club

mountain-clouds-8-textWe recently had an idea that we would like to share with parents whose children (or grandchildren) are in special education. Have you ever considered starting a book club to read and discuss books on special education? We recently read about a parent group that was reading Pete and Pam Wright’s excellent book, From Emotions to Advocacy. That was our first book on special education and it really opened our eyes to the reality of special education and advocating for our child.

Instead of joining a book club to read the latest fiction, why not join with like-minded parents to read and discuss books on special education or any other books that would help you advocate for your child’s education? At the end of this article, we’ll suggest some of the most useful books we have come across.

How to Begin

Once you choose a book, your group can plan to read one chapter a week and discuss it at the next meeting. Books by Pete and Pamela Wright and also our book, have a lot of important information and ideas for parents, so it is important not to try to cover too much in one meeting. The weekly discussion could also include a brainstorming session about how you can use the information from that chapter to improve your child’s experience in special education.

Here’s an example: In Chapter 11 of Parents Have the Power to Make Special Education Work, we write about transition planning and graduation. This is a topic that even parents of middle schoolers need to start thinking about, since effective transition planning should begin in the IEP meeting preceding a student’s entering ninth grade.

In this chapter, we explain why planning ahead is important, and we discuss the details of transition planning and services. We also describe what we call “the graduation game,” which is how some school districts give inflated grades and overly optimistic progress reports to ensure that a student will graduate easily and on time. Many parents don’t understand that for schools, graduation ends their obligation to provide special education services, so there is a great incentive to graduate students, whether they are prepared for the next step in their lives or not. We end the chapter with eight points describing what parents can do to prepare for transition planning and graduation. This section can be a good starting point for a group discussion.

Some Book Suggestions

You may already be thinking of some books that you would like to read and discuss in your book club (Parents Have the Power to Make Special Education Work is a good place to start!), but in case you would like some suggestions, here are a few of our favorites, and why we like them (we’ve provided Amazon links to these books for your convenience only; we have no financial interest in selling them):

  • From Emotions to Advocacy by Pam Wright and Pete Wright. The Wrights are in the forefront of helping parents understand and deal effectively with special education. This is one of their best books for parents. The Wrightslaw web site is likewise one of the best Internet resources for parents.
  • Writing Measurable IEP Goals and Objectives by Barbara Bateman and Cynthia M. Herr. This is a clear and concise guide to one of the most important parts of the IEP. It contains useful examples that you can follow.
  • Straight Talk About Psychological Testing for Kids by Ellen Braaten and Gretchen Felopulos. This book provides clear explanations of how psychological testing works and how testing can identify specific learning disabilities. The authors go into the issues of interpreted scores, deciphering jargon-filled reports, and making sure that a report contains useful recommendations. There is also a discussion of how to choose the right professional to conduct tests.
  • How To Compromise With Your School District Without Compromising Your Child by Gary Mayerson. This is an engaging and candid text, written by a special education lawyer who is also the parent of a child with special needs. The book is full of first-hand accounts of dealing with school districts. Many of these accounts read like verbatim descriptions of encounters we have had with our school district, illustrating how the problems in special education are universal.

Coming Together to Increase Your Power

These are just a few examples of books that you may find helpful in increasing your understanding of special education and advocacy for your child. By reading and discussing such books with other parents, we think you will find that there really is strength in numbers and discover a great source of emotional support. We hope this idea will work for you!

Judith Canty Graves and Carson Graves

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Parents As Equal Participants in Team Meetings

equal participant 2 textThere is a lot of misunderstanding about the role of parents at Team meetings. In our conversations with other parents and in too many online sources, there is frequently a misconception that IDEA gives parents an equal voice with school personnel in deciding what services or educational placement their child needs. The phrase that is most often cited is “equal participant,” which many parents assume means that the school must accept their suggestions at Team meetings.

The Opportunity to Participate, Not Decide

While IDEA does require that parents be “afforded the opportunity to participate” in all Team meetings [34 C.F.R. § 300.322 (a)], the right of participation is not the same as the right of decision making. The law, in fact, only requires schools to schedule meetings so that parents have the opportunity to attend and for schools to consider any information (such as independent evaluations) or concerns that the parents bring to the meeting. “Consider,” however, does not mean “accept.”

IDEA is clear that the school has the ultimate responsibility to ensure that a student’s IEP includes the services and placement needed for a free appropriate public education (FAPE). Because the law makes the school responsible, the law must also give the final decision on what constitutes FAPE to the school. If parents disagree with the school’s decision, the law provides a due process remedy, either through mediation or a hearing.

Unfortunately, pursuing due process rights can be expensive, time-consuming, and have an uncertain outcome. This means that short of going to mediation or a hearing, you must arrive at Team meetings prepared to be as persuasive as possible in advocating for the services and placement you feel are necessary for your child.

What Can You Do?

Some recommendations we have are:

  • If the Team won’t agree to all your suggestions, try to come to a mutually agreeable compromise. Remember that your goal is to achieve the best possible result for your child’s education, not to “win” a contest with the school.
  • Have a relative or trusted friend attend the meeting as a note taker so that all important agreements are recorded and the subject of a follow-up letter to your special education liaison. This will prevent later misunderstandings about what was agreed to. You can record a Team meeting, assuming your state allows this, but our experience is that this is not always the best option. (See Recording Team Meetings, Not That Simple)
  • Become familiar with any federal or state law that might impact the service or placement you want to have included in your child’s IEP. Sometimes school personnel and administrators aren’t familiar with the laws that regulate special education. A citation, gently delivered, can work wonders in breaking down uninformed resistance. If the resistance is intentional, making the Team aware of the law will work toward your advantage before a hearing officer, if it comes to that.

The bottom line is that thoughtful preparation is the best way to become “more equal” in helping your child obtain an appropriate education.

Judith Canty Graves and Carson Graves

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Interview with Michael Brian Murphy, author of “NLD From the Inside Out”

NLDFIO3 Real Cover2We are pleased to let our readers know about a new book, NLD From the Inside Out, by author Michael Brian Murphy. We believe that this book, just published by Jessica Kingsley Publishers, will be an invaluable resource for teens and adults diagnosed with Nonverbal Learning Disability as well as their families, therapists, and teachers.

The author spent most of his years in the public school in special education, not sure why he was there. His diagnosis was the ambiguous “non-specified learning disabilities,” and he felt that his teachers regarded him as “different” from the other students without understanding why. It wasn’t until he was a young adult that he received a specific diagnosis of Nonverbal Learning Disability or NLD.

This diagnosis led him on a quest to better understand himself and write about NLD to help others, first as an undergraduate student at Clark University, majoring in Psychology, then as a graduate student in Hebrew College as a Master of Arts in Jewish Studies, and now as the author of this book, which has been updated and revised from earlier editions. Mr. Murphy writes with an authentic voice and with great compassion, wisdom, and humor. He understands NLD from first hand experience and explains it in detail. He also shares stories from others in the NLD community to give the reader greater insight into how people live with it. Most of all, he offers advice on how to live a satisfying and productive life. This book is an inspiration to us and we hope it will be an inspiration to you as well.

Recently, we interviewed Michael Brian Murphy to find out more about how this remarkable book came about.

The Graves: Michael, congratulations on the third edition of your book! We enjoyed reading it and feel it will be a great resource for anyone who has NLD or wants to understand it better. Can you tell us a little about your reasons for writing about Nonverbal Learning Disabilities?

Michael Brian Murphy: Thank you very much! As you alluded to in the introduction to this article, I had been in SPED since first grade after my teachers noticed that I was “different,” and I spent the first 2/3 of my life in SPED or equivalent, knowing that I had some kind of learning disability but not knowing exactly what it was. I was 24, almost 25, when I first found out I had NLD. I had actually gotten a previous diagnosis of “Social Emotional Processing Disorder,” but all the notes on that one said “…but see the research on Nonverbal Learning Disabilities,” so I did.

The Graves: You write that your research shows that NLD does not need to be a permanent condition. Could you elaborate on this?

Michael Brian Murphy: When I conducted the survey for the First Edition, I had participating NLDers self-report to what extent they showed various symptoms at ages 6, 10, 14, 18, 22, 26, and 30. What I found was that not only was there a lot of change in how these symptoms manifest over time, but that they change at different rates. Some symptoms just seem to be stuck at “poor” or “fair” no matter what, some improve steadily over time, and some don’t seem to have any regression pattern whatsoever. But the ones that really surprised me were the symptoms – in particular, self-esteem, holding authority figures in esteem based on rank, ability to show empathy, and ability to trust others – that started off “good,” worsened over time, and improved once again, sometimes rapidly, once the NLDer turned 18. I suspect this may have more to do with being in school than with NLD itself.

The Graves: Several chapters of your book are based on interviews with others, like you, who have also been diagnosed with NLD. What common ideas and experiences did you find and did any of the responses surprise you?

Michael Brian Murphy: Between the surveys for the first and third editions, as well the initial interviews, plus my own experiences, about half of the book is based on qualitative data. Having NLD myself, the answers themselves given were not unexpected, but what was really surprising was their emotional power: the sheer level of righteous indignation, uncensored confession, anger, sadness, pride in accomplishments, and oftentimes outright snarkiness. That’s a LOT of untapped feeling. But you know what? When you’ve lived your entire life going through a series of therapists, doctors, and other assorted adult authority figures who don’t “get” you, and now you start talking to a fellow NLDer, this is “therapy” that actually works, and we end up healing one other.

The Graves: You write about the importance of finding a community where those with NLD feel valued and where they belong. Can you share some tips on how readers can find these communities?

Michael Brian Murphy: Well, a lot of the old chat rooms and forums from the late ’90s (NLD on the Web, NLD In Common, nlda.org, etc.) are now either inactive or defunct. Many of the older blogs (Weird Not Stupid, One Foot On The Spectrum, Odd Girl In, Socially Unaware, The Odd Bird, and many more) are still online, but not very active. Now it seems that all the “big names” in the NLD field are on a Facebook group, plainly titled NLD – Non-verbal Learning Disorder.

The Graves: Is this the kind of book that you and your parents needed when you were growing up? What are you hoping that your readers will gain from reading this book?

Michael Brian Murphy: Yes, I have heard time and again from many parents of NLDers (my own mother included) that they wish they had this kind of a book when their NLD kids were growing up, since it not only tells them (both parents and children) what to expect, but what approaches to reward and punishment don’t work, how to listen to each other, and how to approach changes in routine – whether major or minor – diplomatically, so that the NLDer feels he/she is actually heard. What I hope readers will gain is more understanding, and that each and every symptom of NLD is neurologically based. We are NOT making this stuff up.

The Graves: What kind of feedback have you received so far from your readers?

Michael Brian Murphy: Mostly, the feedback from parents has been mixed between praise and requests for more advice, help, and referrals. From the NLDers themselves, there’s also been praise, but more often relief: finally, someone not only understands them, but has written a book to get the adults in their lives (mostly parents) to understand them as well. So far, I’ve received hundreds of communications from 37 (and counting) countries, so the word is getting out! I really appreciate you inviting me to speak to your readers, thank you.

Judith Canty Graves and Carson Graves

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Levels of Performance and Your Child’s IEP

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An IEP is your child’s roadmap to an appropriate education. No map can help you, however, if you don’t know your starting point. That is why the IEP must contain objectively measured assessments of your child’s abilities before it can be an effective educational roadmap.

There are two places where clear descriptions of your child’s current level of performance should appear in an IEP:

  1. In the curriculum and other educational needs sections of the IEP to describe overall abilities in both academic and functional performance.
  2. Before each IEP goal to indicate current ability in the skill being addressed by that goal.

This information is critical to developing an IEP that accurately assesses strengths and weaknesses and develops goals that are specific to your child’s individual needs.

Overall Academic and Functional Performance

The 2004 re-authorization of the special education laws, IDEA-04, requires that an IEP contain a description of a student’s “present levels of academic achievement and functional performance,” generally known by the acronym PLEP,* although some professionals use the acronym PLOP, or the tongue twisting PLAAFP.

The PLEP describes how the student’s disability impacts his or her overall progress in academic as well as in social-emotional and behavioral areas. Having this information helps your Team identify the appropriate types of instruction and accommodations needed for your child to make effective progress in school.

In describing the general academic curriculum, the PLEP should indicate which specific subject areas, such as English Language Arts, Science and Technology, Mathematics, or Social Studies, are affected by your child’s disability. For each area there should be a description of your child’s current performance in the classroom, such as a listing of recent grades or a summary of your child’s classroom behavior, e.g., “He does not complete homework consistently and assignments are handed in late, or not at all.” The purpose is to indicate how your child’s disability affects progress in the subject area.

For non-academic performance, the PLEP serves the same purpose in describing how your child’s disability affects areas such as social-emotional, adapted physical education, behavior, or extra-curricular activities. The PLEP should include details on specialized instruction, methodology, modifications, and accommodations the student needs to receive in each area.

Importance of Objective Data

It is important that the PLEP reflect the available testing data and diagnosis, and describe how your child’s performance can be objectively analyzed. We have seen many IEPs use only subjective methods, like teacher observations, for determining current student performance, even when testing data was readily available. While classroom observation can be helpful, the PLEP should not rely on it exclusively.

Assessments for IEP Goals

Whereas the PLEP describes how a disability affects a student’s overall academic and non-academic performance, each IEP goal should be preceded by a description of the student’s current ability in the specific skill area covered by that goal. Simply put, if you want to create a realistic and attainable goal for a skill, you first have to know your starting point.

Knowing how far a student is below grade level, for example, helps answer the questions about what kind of specialized instruction is needed and how intensively it should be given. A student who is three years below grade level in math will need more intensive math instruction than one who is only a year below grade level.

The most effective way to determine the current level of performance of your child is through testing. In reading, the Woodcock-Johnson Test or Wechsler Individual Achievement Test (WIAT) are considered good indicators. In non-academic areas, a psychological evaluation can indicate social-emotional or behavioral performance, and a test of fine or gross motor skills can indicate occupational or physical therapy performance. More general assessment methods, such as the completion of a reading skills class or participation in a sports activity, can also be helpful.

Quality of the Assessment Affects Quality of the Goal

There is a definite relationship between the quality of the assessment and the quality of the goal. We have noticed that the less objective the assessment, the more vague and ineffective the goal. In IEPs where the current level of performance for a skill is simply an anecdotal description of behavior without any objective data to back it up, the resulting goal is often so vague that there is little, if any, chance of the student achieving it. In our book we give actual examples of many vague and hard-to-measure goals. In almost every case these goals were preceded by performance assessments that were equally vague.

What You Can Do

  1. Make one of the first agenda items at your annual IEP meeting to identify and describe your child’s current abilities in both academic and social-emotional areas. Focus on how well he or she is accessing the general curriculum. Don’t rely only on grades, however, as in most schools grade inflation makes them an inaccurate yard stick.
  2. Make sure that the IEP contains an accurate description of your child’s disability(ies) and, if you are comfortable including it, the most current diagnosis. If necessary, update this information each year during the annual IEP review.
  3. Before writing a goal, make sure that you and the rest of the Team have a good understanding of your child’s current level of performance in the skill being addressed by that goal. The best descriptions of performance come from objective data found in the most recent evaluations. While anecdotal descriptions can be useful to supplement testing data, do not rely on them exclusively.

When working with your school’s IEP Team members keep the focus on identifying your child’s current ability to access the school curriculum. Only then can the IEP effectively address goals and include the necessary services, accommodations, and modifications needed to obtain the appropriate education that is your child’s right.

Judith Canty Graves and Carson Graves

Parts of this article are adapted from Chapter 6 of Parents Have the Power to Make Special Education Work, published by Jessica Kingsley Publishers.

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* The acronym comes from the language in IDEA-97, which specified that the IEP include a statement of the student’s “present levels of educational performance.” While the language in IDEA-04 changed to include both academic and functional performance, most people still use the old acronym.

Special Education Etiquette

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Special education can be both rewarding for parents and a source of frustration when things don’t go the way they should. While some experts believe that conflict between parents and schools is normal and inevitable,1 it is too easy to become frustrated with the special education system and take it out on the individuals in the system you encounter most often.

The Individual is Not the System

It can be unfair, however, to confuse the individual with the system. Teachers and other professionals who choose special education as a vocation usually do so out of a genuine interest in helping students and can be as frustrated by the system as parents. Whenever you are tempted to display your anger and frustration, our best advice (paraphrasing investor Warren Buffet), is to remember these two rules:

  1. The special education experience is not about you, it is about your child.
  2. Never forget rule number one.

What we mean by this is that no matter how many violations of the special education law the school commits and no matter how angry that makes you, do not take the situation personally. Always do your best to maintain a cordial relationship with the people who are teaching your child, providing services to your child, or administering the program your child attends. You need their help for your son or daughter to get an appropriate education.

Seek Appropriate Remedies, Not Confrontation

Confrontation only makes school personnel defensive and less cooperative and puts your child in the middle of an uncomfortable situation. To quote one expert: “Unless you are prepared to remove your child from public school forever, you need to view your relationship with the school as a marriage without the possibility of divorce.”2

If necessary, you can seek remedies for problems in a due process hearing, but if you do, the hearing officer will want to know that you first have made every effort to cooperate and try reasonable suggestions that school personnel offer. It is fine to point out problems and seek to negotiate solutions, but if you go to a hearing with a history of confrontation and lack of cooperation, that will inevitability be factored into any judgement the hearing officer makes.

What Can You Do to Maintain an Appropriate Relationship?

In short, there is no downside to being polite, even if you feel that the courtesy is not reciprocal. To that end, we have the following suggestions to help you maintain an appropriate relationship with school personnel:

  1. Treat the people working with your child as you would like to be treated. What you perceive as lack of cooperation may be the result of being overwhelmed by having to work with too many students or being hamstrung by lack of resources, rather than an intentional slight. It doesn’t help to be rude or dismissive of people who are doing their best in less than ideal circumstances.
  2. Don’t assume that school personnel understand all the details of your child’s disability. Be willing to spend some time educating Team members about your child’s particular needs. Sometimes parents mistake a lack of understanding as a lack of cooperation.
  3. Prioritize what is most important for your child’s education and do not make a habit of complaining about small procedural errors or trying to control all the details of your child’s school life. Save your energy and credibility for the important problems. Ask yourself if you would rather be angry or get appropriate services for your child.
  4. Find a forum other than a Team meeting to express anger or frustration. Use a spouse or trusted friend for animated discussions about things you feel the school is not doing appropriately. A trained advocate can be a good sounding board for your concerns as well as a source of advice for how to proceed when you encounter roadblocks.
  5. Keep an open mind at Team meetings and consider all suggestions thoughtfully, even ones with which you might disagree. If you find a discussion over a disagreement becoming too heated, or if a Team member starts to lose emotional control, ask for a short break or, if necessary, ask that the meeting be reconvened at a later date.
  6. Even if your school is not following the letter of the special education laws, your job is to insure that your child gets the help he or she needs, not to point out the school’s failures, or worse, try to get the school to admit its failures. School districts, like all bureaucracies, will hardly ever do that. To this end, concentrate on the solutions to problems, not on the failure that might have caused the problem.

None of this means that you have to accept improper behavior from school personnel or not stand up for the rights of your child. Your goal is to create a positive working environment in which you can advocate for your child and successfully negotiate for appropriate services and supports.

Judith Canty Graves and Carson Graves

The above article is adapted from Chapter 2 of Parents Have the Power to Make Special Education Work.

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1. Wright, Pam and Pete Wright, From Emotions to Advocacy, Second Edition, (Hartfield, VA: Harbor House Press, 1999), p. 41.
2. WrightsLaw, “Parent/School Relationship: Marriage Without the Possibility of Divorce.

Response to Intervention Falls Short

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Last year we wrote about how RTI (Response to Intervention) was being used by some schools to delay, or even prevent, students from being evaluated for special education services (Gatekeeping 101: Response to Intervention). Now it appears that even when used as intended, RTI isn’t achieving the goals that educators promised.

In this followup article, we highlight a recent study sponsored by the U.S. Department of Education that details how students receiving RTI instruction are actually falling further behind grade level rather than catching up. We also have some suggestions about how to proceed if your child is offered RTI instead of special education services.

The Background

RTI was written into the reauthorization of IDEA (the Individuals with Disabilities Education Act) in 2004 as part of an attempt to make the goals of IDEA, which address the unique needs of individual students, more closely conform to the No Child Left Behind Act, which attempts to raise standards for all students uniformly.

Our earlier article explains how the intent of RTI was to screen every student at the elementary school level (ideally in kindergarten or first grade) to identify those who were struggling and, through a standardized series of increasingly more supportive services called “tiers,” bring them up to grade level in basic skills like reading and math. Rather than use the program as it was intended, however, we documented how some schools were using RTI to divert students away from becoming eligible for individualized (and more expensive) special education services.

“Practice Falls Short of Promise”

Adding to our concern about the misuse of RTI as a substitute for special education has come even more discouraging news from a 2015 study sponsored by the U.S. Department of Education that evaluated RTI practices as they are applied to elementary school reading instruction. As described in an article in Education Week magazine, this study examined over 20,000 students in 13 states and found that first grade students who received RTI actually performed worse than a similar peer group that did not. Instead of catching up to grade level, the students receiving RTI lost the equivalent of one-tenth of a school year. To quote one of the study’s authors: “[T]his turns out to be what RTI looks like when it plays out in daily life.”

Why is it Failing?

The Education Week article offers a few insights into what is going wrong:

  • Schools are using RTI “as a kind of general education substitution for special education.” This was the concern we highlighted in our earlier article on special education gatekeeping.
  • Schools are not adequately evaluating students for learning disabilities before initiating an RTI program. Many schools don’t perform any evaluations prior to RTI and therefore don’t know if the interventions they are using are even suitable for the students they are attempting to help.
  • Schools implementing RTI are not clearly separating the broader goals of general education instruction and the more narrowly focused goals of RTI instruction, implying a confusion as to what the program is actually trying to achieve.
  • The RTI instruction in the study was found to be rigid and standardized for all students. In looking at RTI for reading, for example, the study found that the instruction focused on phonics and not reading comprehension, regardless of the individual student’s needs.

In short, RTI, for all its good intentions, is a only a theory without empirical validation. It remains to be seen if this is because the program is inappropriately designed, or if schools are unable or unwilling to implement it appropriately.

What Can You Do?

Like the school we wrote about in our previous article on RTI and gatekeeping, if you are told that your child must first try RTI before the school will consider an evaluation for learning disabilities and special education, consider the following:

  • Very few states have defined any criteria for moving from RTI into special education. If you want to try RTI first, get a written statement from your school describing the criteria for transitioning from RTI to special education. This should include a timeline of how long RTI will be attempted, a definition of the progress expected, and what objective and measurable standards will be used to measure that progress.
  • If you do not feel that RTI is appropriate for your child, it is your right to request an evaluation for eligibility for special education in all areas in which you suspect a disability. The regulation is 34 CFR § 300.309(c), the authorizing statute is 20 USC § 1412(a)(3). The only requirement is that your request must be in writing. The Office of Special Education Programs (OSEP) has warned schools that they must not use RTI to delay or deny “a full and individual evaluation” for special education eligibility.
  • RTI is not a way to diagnose a specific learning disability. You may learn important information about your child through the RTI process, but only an appropriate evaluation performed by a qualified professional can determine the presence of a qualifying disability.
  • RTI and special education are not mutually exclusive. The school can evaluate your child for a learning disability at the same time that your child is receiving RTI instruction. There is an excellent guide for parents on the Wrightslaw website that explains the RTI process in more detail.

As with every other aspect of special education, you need accurate and objective information about your child’s strengths and weaknesses provided by an evaluation. Even though RTI instruction may be high quality and research-based, can it meet your child’s unique needs? Meeting these needs through an individualized education program is your child’s right under IDEA.

Judith Canty Graves and Carson Graves

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