From Angst to Advocacy

Good News, Bad News

You take your child to the doctor because he is not feeling well. There are very specific questions and concerns that you would like to have addressed. After repeated examinations (perhaps by a number of different specialists), different kinds of testing and lots of discussion, you learn that your child has a condition that is not going to go away (bad news) but for which there is an effective course of treatment (good news). Your emotional barometer has gone from "What, me? Worry?" to "Don't forget to breathe," and you know that in due time, your head and your heart will be back in sync with each other, and you will be able to reflect upon your experience in a thoughtful manner and even provide information and comfort to others who you meet who might be on a similar journey.

Now think back to the first time that you heard the words "learning disability" (or related terms like dyslexia, auditory processing disorder, executive function deficit...) in the same breath as your child's name (or someone else you love), and no doubt a surge of emotions will remind you how stressful an experience this was for you and your family. What are some of these emotions? Are they part of the "normal" way people deal with stress? Are they always "bad news" or can they provide a framework for capturing this emotional energy and redirecting it on the path from angst to advocacy? Read on.

A Hierarchy of Feelings 

In the early 1940s, a psychologist named Abraham Maslow began writing about a system or model of understanding human behavior known as a Hierarchy of Needs. His theory was that particular emotions could help individuals to better understand their motivation, attitudes and behaviors. Maslow clustered emotional needs in the areas of:

• Physiology (having to do with comfort and the physical body)
• Safety (dealing with the need to be protected from harm)
• Belongingness and love (feeling attachment to others)
• Esteem (having your thoughts and actions valued by others)
• Knowledge and understanding (seeing information)
• Aesthetic (deriving pleasure and triggering emotion)
• Self-actualization (having "peak experiences" that provide self-fulfillment)
• Transcendence (connecting to something beyond yourself to help others)

Maslow's basic position was that as a person moves down the list from more primitive and basic needs to more complex and altruistic needs (benefiting others as well as one's self), he is increasingly better at coping with new and potentially stressful situations.

Climbing the LD Ladder

Borrowing from Maslow's Hierarchy of Needs, the following is a list of feelings and needs that are shared by parents of children with learning disabilities (LD):

• Networking ("I'm ready and available to help you; let me share my family's journey with you and let's brainstorm together about how to be the best advocate for your child's needs.")
• Knowledge and Information ("I know that, with hard work and lots of support, my child will be OK. I also know where and how to find good information about LD.")
• Fear of the Future ("How will my child be able to succeed after high school and in the workplace? Is college in the picture? What choices do we have?")
• Anxiety (This is all so new. Am I doing enough? Are we doing the right things?")
• Resolve ("OK, LD is real, it's not going away, and let's get on with the business of problem-solving and overcoming barriers to learning.")
• Alienation ("The fewer people we tell about this the better; let's keep it within the immediate family and just the minimal number of people at school who need to know.")
• Guilt ("Maybe I should have seen this coming. Could I have prevented my child from having a learning disability in the first place?")
• Inadequacy ("I feel so incompetent. There is so much to know, so many new terms and procedures, so much responsibility to get it right.")
• Fatigue ("I just want this to go away; I don't even know how to think about it.")
• Helplessness ("Now what do I do? Who do I turn to? Who can I trust to help?")
• Rage ("This is not fair! How did this happen? I am furious that this is happening to me!")
• Grief ("Oh no! This can't be happening to us; nothing will ever be the same.")
• Listen ("I hear what you're saying, and I'm trying to understand what it means.")

Think of these items as rungs on a ladder, starting from the very first time you recall mention of LD with regard to your child (the bottom rung). Then extend upward toward the point where you are not only an active and informed partner with your child's school service providers, but also a firm and effective advocate for your child and a source of information and resources for others as they climb their own ladders toward success in school and in life. Remember — not everyone's ladder is the same, and not everyone climbs in the same way. Make note of the different rungs as you think about your feelings and experiences, peer upward toward the rungs that await you, stop along the way to reflect where you've been, make sure that you are feeling secure in your place, and traverse this ladder with honesty and optimism.

Additional Resource

LDsuccess.org is a Web site that shares research about key factors ("success attributes") that contribute to success for individuals with LD in a practical and easy-to-understand way. While focusing on self-awareness, proactivity, perseverance, goal-setting, support systems, and emotional coping strategies, there is much insight to be gained from this site about how individuals cope with the impact of LD.

Sheldon H. Horowitz, Ed.D. is the Director of LD Resources & Essential Information at the National Center for Learning Disabilities.