From Emotions to Advocacy

One of the books I have found helpful in my own education is From Emotions to Advocacy by Pam and Pete Wright. Learning the law is only one of the steps in becoming a champion for your child-you also have to learn how to successfully advocate in a meeting when your stomach is in knots and you're on the verge of tears. I've spent years learning special education law-I know what my child is entitled to-but the minute they say something negative about her, I turn to mush. I can barely remember my name, let alone the provisions for obtaining a 1:1 paraprofessional.
So, I'm excerpting an article from Pam Wright below, and am including a link to the entire article so you, too, can try to learn how to secure a meaningful education for your child.

From Emotions to Advocacy: The Parents' Journey
by Pamela Wright, MA, MSW
Worry. Sadness. Fear. Guilt. Helplessness. Anger. Confusion. Disappointment. More worry.

Parenting has always encompassed difficult periods — times when parents feel concerned and confused — sleepless nights when they worry about how well they are fulfilling their responsibilities to their children. Raising a disabled child "ups the ante." Meeting the complex needs of the child with a disability can be extraordinarily difficult, frustrating, emotionally draining — and expensive!

Parents of disabled children understand one crucial fact—that only by obtaining an appropriate education will my child have a real opportunity to lead a fulfilling, productive life. Unfortunately, statistics about the outcomes of special education programs will not alleviate your concerns.

Researchers have found that most special education programs fail to confer adequate educational benefit to many of the youngsters they are designed to serve.

Emotions: Energy Source or Achilles Heel?

"The pure rage that stems from an unredressed injury can be more fearsome than that produced by the original wrong." (Gerry Spence, respected attorney-litigator and commentator on civil rights in America)

John sat on the couch in my office. His face reddened and his fists clenched as he talked about his son Chris and his contacts with the teachers and administrators at Chris’s school:

"My son is 13 years old and he still can’t add simple numbers. He can’t add 15 and 9. He can’t read either, and he’s been in special ed since he was six years old.

"This year they put him in regular classes with some sort of collaborative teacher-they say that’s how they teach LD kids at his school, and that’s all they can do. And now he’s failing everything—everything! Last grading period—four F’s and one D. The only thing he’s passing is Science."

As I sifted through several inches of disorganized documents that John brought to the meeting, John continued: "And when I complained that he isn’t learning, they told me it’s my fault because I’m not making him do homework! Do you know what a nightmare homework is? He’s exhausted when he comes home from school — where he hasn’t learned anything. Then he has to spend two or three hours doing papers. It’s a nightmare. A real nightmare . . .

I continued to skim through the documents — old standardized tests, letters from Chris’ teachers, school papers, report cards, IEPs from the first grade to the present — all mixed up. No current psychological or educational testing. John’s voice raised in anger: "Pam, you don’t understand. They lie. They blame kids for not learning when they are not teaching . . . And they are stupid. They can’t teach, they can’t do anything. They are morons! And I told the principal that when I met with him last week . . ."

Tragically, John’s case is not an isolated situation. This father’s frustrations and fears had driven him to explode and demean school personnel. His reaction — an angry outburst — gave him short-term relief from his intense feelings of frustration.

Did his explosion and insults lead to the development of a more appropriate educational program for his son? Of course not. Will it be more difficult for John to work effectively with school personnel in the future? Definitely. Will Chris be the ultimate loser? You bet!

The intense emotions experienced by parents often become their "Achilles heel" as they attempt to obtain an appropriate education for their child. When the local school system fails to provide the child with that critical "special" educational experience or offers "too little, too late," many parents are shocked and angry.

These parents feel betrayed by the one system which they had trusted to help with the difficult task of educating their [child with disabilities]. Once lost, trust is hard to regain. As Gordon, the father of a fourteen year old learning disabled boy erroneously diagnosed by the school district as "seriously emotionally disturbed," explained:

"One of the great tragedies of parental disillusionment is that even if we finally find a good educational program, we know that our child has been damaged by people within the school system. We don’t know how severe or enduring the damage will be. The feelings of betrayal are often so strong and bitter that there will never be any trust by the parents."

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There is an antidote to feelings of helplessness, hopelessness and despair.

As you come full circle, having experienced the denial, anger, guilt, and sadness that are the inevitable reactions of the loving parent, you will find that your emotions can be freed to use in a positive search for information and for solutions to the problems you face. You must transform your emotions into energy-the battle to obtain a good education for your child will be long and arduous. You need to conserve your strength and focus on what is important-obtaining an appropriate education for your child.

Becoming an advocate means becoming an expert. In the course of your journey, you need to learn all that you can about your child’s particular disabling condition and how this condition can be remediated.

You must learn about evaluations — psychological, educational, neuropsychological, psychiatric neurological—and what these evaluations measure. Depending upon your child’s unique problems, you may also need to learn about speech-language, physical therapy, and occupational therapy evaluations too.

In your advocacy journey, you will need two things-accurate information and support. This journey is more difficult if undertaken alone.

Join an Organization . . . or Two

It is essential that you join disabilities organizations that represent your child's disability. These organizations represent a rich source of information and support that is invaluable to parents, regardless of the child’s [] condition.

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Learn to use your emotions as a powerful driving force.

Understand that pity is a negative emotion — it is always destructive.

Our children can accept some blows from the system and survive. Ultimately, children grow and flourish by facing adversity — if they know that we understand them, support them, and believe in them!

Read the entire article here.