Click for
printer friendly
version

EMPOWERING PARENTS

OF PERSONS WITH DISABILITIES:

ISSUES AND SKILLS

 

 Paper Presented at the Annual Conference of the

Deaf-Blind Multihandicapped Association of Texas (DBMAT)

 

 Camp Jon Marc, Meridian, Texas

October 13, 2001

 

by

Ed Hammer, Ph.D.

The source of personal power is the feeling that you have a choice. In those times when you felt hopeless and helpless the cause of those feelings were from a loss of personal power and the reaction to that feeling of loss. Notice that it is the feeling of having a choice that is key here. We always have another choice, it is just that at times we donít feel that we have another choice. You may not be aware of your other choices. That comes from practicing looking for your other choices. To paraphrase Forest Gump, "...choices are like Kleenex, when you take one out of the box, another one just pops up." How many choices do you get? As many as you need. Our task is to begin to look for the other choices. They are there, we may not know to look for them. It is learning to look beyond the immediate to find other options, choices, or possibilities that give the individual a sense of empowerment.

Empowerment does not come from an external source. It comes from within. No one can give it to you unless you are ready to look at your own empowering behaviors and act upon them. Have you ever encountered a person who was beaten down, helpless, filled with despair? That person has surrendered access their internal power source. They have forgotten that they have the choice of not being a victim and of being a equal participant. All of us have, at one time or another in our life, slipped into being powerless. The ones who do something about that state of powerlessness are the ones who intuitively or even purposefully decide that their life will not be lived as a victim. You have made that choice in the past, now bring the choosing to be powerful to your consciousness and learn to select being powerful whenever you become frustrated, upset, or someone else tries to take away your power.

You may ask, "Why would anyone actually choose to be powerless?" There are several barriers to choosing to be empowered that require discussion. The first is stress. Stress in life is often viewed as a negative. The pressures of living in the present day are complex and challenging and the stress of having to address these challenges on a daily, almost moment by moment basis, is often numbing. However, there is an insight into life that comes from studies of the importance of stress in everyday living( see Hans Selyeís book The Stress of Life). The underlying idea is that stress keeps a person changing and living. This implies that a living human being cannot stay still and constant, there must be change and movement in order to keep the human organism alive. The very idea of being alive embodies the concept of change and change involves the concept of stress to urge change. The twenty-five cent word that is related to this idea is entropy, meaning a flowing energy that cannot be measured by observation. Apparently there is a need for some level of stress in our lives to keep the energy flowing.

Then the issue must be: How can an individual keep stress at a level that is manageable and does not overwhelm or numb daily functioning? The first response to that question is to realize that life includes stress and that stress is important to life. To keep stress levels in a comfortable zone, there are several suggestions worth considering:

 

1. Recognize the stress before it becomes a problem. If going to your childís school creates stress, recognize this before going to the school. Set a limit of how much this is going to be a problem and when that limit is reached, do something to address how very stressful this is for you. It is all right to tell school personnel, "this is very stressful for me and I want to talk about 3 of the 10 items you want to discuss." Then talk about those items and come back (when you are less stressed) to address the remaining items or those items that you feel you can handle. You donít have to give up your control over the amount of time or the number of items discussed. You have that power.

2. Re-state the stress as an opportunity. Take a moment to experience the more negative feelings and then move on. Yes, it bothers you but if you focus on your reaction and being bothered, you miss the opportunity to look at the problem from a different viewpoint. Recognize that this is stressful and that you have the choice of how much the event will bother you. Then start to look for options, opportunities or choices that you may have overlooked. How does what is happening give you a new opportunity to address a problem? Maybe you want an intervener for your child in school but the school says that they will not provide it. Instead of feeling defeated, look into ways that you can create the same level of support for your child in school. Perhaps other students would like to learn about how to help your child. It may be that students from the high school who are expecting to go into teaching and Special Education would benefit from learning how to help your child in school. It may be that the retired senior citizens in the community are looking for volunteer projects and would welcome coming to school (at no cost to the district). It may be that there is a "foster grandparent" program available that would have a person come into the school for a certain number of hours or minutes a day. Look at the possibilities.

3. Expect the unexpected and have a plan to recognize it, do something about it, and build a support network to help you. There are stresses that are usual: the line at the grocery store, the wait in the doctorís office, the news that your in-laws are coming for the week! These are stressful or potentially stressful events that you already have learned to cope with and have developed a plan of how you will NOT allow them to get under your skin and bother you. Other stresses are less predictable but can be addressed with the same response as those that are usual. You already have the coping skill, use it in other situations. Learn to have an alternate plan. Learn to have limits and when those limits are reached, go take care of yourself. Learn to be aware of your power and events that can erode your power. To sound like a broken record, you do have a choice.

4. Explore ways to keep your self excited and hopeful. If you have set a goal of "fix it" when you ask for help for your child. Look at that goal. Is it going to be "fixed" by any one? Look at the reality. Donít place pressure on yourself to be "Super Mom" or the fighter for your childís services. Spread the pressure around: to the physician, to the school, to your spouse, to the family, to your community. It is when you feel isolated and alone that your power begins to get washed away. What do you want your life to look like? What are your goals for the next 3 months, the next year, the next decade? Have a dream. Have a plan, and set goals that lead you toward what you want, need, and like.

When you give yourself the opportunity to set goals that are realistic in your own framework and have the feeling that you can choose how to reach those goals, you will begin to be able to take care of yourself and to know that you can cope with new challenges. You can give yourself the level of control you want in a situation and in doing so, you can transform stress from a source of numbness and confusion to a manageable part of everyday life.

The second barrier to being empowered to be the person you want to be is anger. When you get locked in anger you often feel powerless, helpless, and hopeless. Anger is often viewed as a negative feeling. However, in the mental health business that I work in, anger is viewed as a positive. Consider this: You really cannot be angry about something unless you care about it. You are not angry about who drives down the street in Dallas or El Paso. Right? It is not at the top of your list. When you begin to feel angry, look at the degree to which you care about what happens. The more angry, the more you care about outcome and the more fearful you are about outcome. Anger and fear are also the same emotion, just the opposite end of the same stick. Show me a person who is angry and I will show you a person who fears something. Show me a person who is fearful and I will likewise show you a person who harbors anger. That is how we work with anger management in the mental health field: fear and anger, anger and fear.

There is a lady from Michigan State University who lectures on anger management. I am sorry that I have forgotten her name, but she talks about the Anger "A" and gives a very clear picture of the way that anger enters lives and affects us. The Anger "A" breaks down the components of anger into a more clearly sequenced way. Figure 1 on the next pages explains anger in terms of normal human behavior and one that is helpful when recognized as a message from within ourselves. It is well known that anger is associated with a physical response called "flight or fight" that is an alerting system within the brain that warns us of danger, hazards, or getting hurt. It is also known that our personal patterns of feeling anger and expressing anger are learned. So, there is a brain-based response and there is a learned response. The learned response is in place by age 8 years in most people.

The reason that anger is a barrier to feeling empowered is that when anger starts, we have a fear that we will lose control. Loss of control keeps anger and the expression of anger a problem for many people. The message that they learned was that if you have a little anger expressed, it is like having a balloon suddenly release all the air inside it: you will become totally angry, consumed by anger, and be out of control. So it is important to recognize that anger is a physical response, that we learn how to deal with it, that is includes some degree of fear, loss of control, and becoming powerless. Then we can begin to look at how each of us handles anger and how we can learn to use it as a positive feeling.

 

 

The   ANGER    "A"

 

A                       Anger is what is seen on the outside but it covers:
                                                  Fear,    Loss,   Betrayal
                               Anger is a smoke screen covering something else
                               (a problem, a past experience, a prediction...)

 

N                       Needs: If your needs are not met, some type of anger
                                related to physiology will emerge (needs are determined
                                by genes, hormones, protective responses -fight or flight)

 

G                       What is Going on?   Use your observant ego by pulling
                                above the event and looking at what is happening

 

E                       Experiencing...what are you experiencing in a sensory
                               capacity?  How do you make sense out of what you are
                               feeling, hearing, seeing, touching, smelling or your gut is telling
                               you?  Sensory experiences create a "CASE FILE" from all of
                               life experiences and then screens current experience through past
                               experiences ( i.e. fear of loss, betrayal, or disappointment)

 

R                       Reason and Reality - when feelings accelerate over thinking
                               one type of anger happens.  When thinking accelerates over
                               feeling, another type of anger happens.  What is your pattern?

 

  Source: Ed Hammer, Ph.D., Functional Resources, 3905 Huntington Drive, Amarillo, Texas 79109,806-353-1114

==================================================================================

TYPES    OF    ANGER

First degree anger:

emotionally being upset (may happen at least every 20 minutes during the day)

Usually we wait and it goes away

Effective ways to deal with 1st degree anger: Training to listen to ďanger alarmsĒ

and what bothers you...what triggers your anger?

Second degree anger:

keeps coming back (may be triggered by events, persons, or situations)

Has a problem underneath that is not being addressed

Attack the problem, not the person

               Check out the relationship...what is it that you want? Donít take it out on others (kick the cat pattern)

                          Effective way to deal with 2nd degree anger: Consult with another to find the real problem

Third degree anger:             Could be life threatening, shown through intolerable rage

Begins to pervade everything in life, always angry, never satisfied

Shows in body posture, body language, tone of voice

Effective ways to deal with 3rd degree anger: Needs someone outside the loop to find problem

(Usually deals with loss, betrayal, disappointment, or fear)

 


Where do you first feel your anger?

 

Stomach - internalized feelings

that are not expressed

 

Legs - Body urging flight

 

Arms/neck - Body urging fighting


Concepts of anger advanced by Alfred Adler:

1. anger has to do with birth order as to how you react to the trigger,

2. previous body experiences (being hurt, punished for expressing feelings, etc.) affect how you react to the trigger,

3. the degree to which you have learned to pull yourself above what is happening and looking down on the event also determines how you react to trigger(s).

Build upon your anger to get things done, use the energy that anger brings out to set goals and get what you want, what you need, and what you like

Source: Ed Hammer, Ph.D. Functional Resources, 3905 Huntington Drive, Amarillo, Texas 79109,  806-353-1114

 

 

 The final barrier to being empowered has been presented on many occasions as "Parental Needs." This list was proposed by a wise parent who also happened to be a professional. Her name is Dr. Natalie Barraga. Dr. Barraga stated that there are certain needs that a parent of a person with disabilities has that must be recognized and met if affiliate services are to be successful. Yes, it is important to recognize the parentís needs. If these are ignored, parents become isolated, locked into negative feelings, and stuck in a cycle of despair. The list by Dr. Barraga is as follows with comment added to her list:

Parents need:

Emotional Support and Understanding - What this means is that parents need to know that their feelings are normal human reactions and not craziness, being out of control, being responsible for something that they did not wish or intend, or any of a variety of feelings that hit parents of persons with disabilities as the parents try to navigate the service delivery system. Parents do not need to be told, "now, now, there, there everything will be all right..." Everything will not be all right. Parents did not ask to be in the business of disability services. Parents did not plan to have all the problems that they encounter in trying to raise a child with chronic problems. Parents need to know that they can feel any feeling and that there are people who will be there for them as they work through their feelings.

Parents need:

Information and facts - Parents have a right to know that the professional does not know! Parents enter the field of disability services in mid-stream. They have every right to assume that the system is in place and that professionals know exactly what to do and how to fix the problem(s). It seems to help parents to have a notebook or folder to keep information in. They do not have to read it. Just having information that the parent can handle gives a sense of control and a feeling that they have the same information as everyone else. It also means that the parents need to feel that they are part of a team, as an equal participant, and that parents and professionals can work together. Too often, it seems, professionals give the impression that they know more about the child than the parents.

Parents need:

Active Participation in Planning - Remember, Dr. Barraga made this list before there were federal laws to provide education to all children. Parents want to be part of the process of providing services, not passive recipients of the process. I am often ashamed at IEP meetings I attend. Typically there are many, many professionals (sometimes one side of the room is filled) and the parent or parents (often seated opposite the professionals). I call these IEP meetings "big poker games" where each person has their cards dealt and each card is played in a ritual fashion. The outcome is already known, there is no discussion or exploration. It is "get-em-in, get-em-out." This is not the intent of the federal law, but these types of meetings sometimes take on an "us" and "them" format. Parents need to be part of the team. They have valuable information about the individual with disabilities. They are the only ones who will be with the person who is disabled throughout the course of education, rehabilitation, and lifetime living. Parents come in contact with every professional, professionals do not come in contact with each other or past agency providers. I think we have to help parents become empowered by discussing how they want to participate and what their goals are for the family member.

Parents need:

Self-needs - Parents need to realize that they have a life separate from their childís condition. I worry when a family starts to be known as the "deaf family" or the "blind family." Parents need to remember that they married for several reasons - for love, for sharing, for intimacy, for sex, for lifetime bonding. When a couple encounters disability in a family member, these reasons for marriage become blurred. Parents need to remember that they have a sex life and that every parent, EVERY PARENT, wants time away from their children. It is all right to have a weekend just for the couple, even when your mother says, "How dare you leave that poor child with a babysitter." If self-needs are not met, the couple starts to pull apart and the marriage falls apart.

Parents need:

Thorough and dynamic understanding of their role - Very quickly it needs to be pointed out that this does not mean that the parents must become SUPER MOM or SUPER DAD. What this means is that it is all right for parents to have limits. It is all right not to have 84 hours a day spent trying to do everything for the child with disabilities. When the speech therapist says "...do 10 of these at night," the OT says "...do 12 of these" and the PT says "...do 45 of these" it is all right for the parents to say, "I hear what you are asking but I do not have the energy to do that right now." It is all right to have boundaries

Do the best you can with the energy you have available. As you become more comfortable in participating on the team, realize your unique contribution(s). Offer these to the professionals as an equal participant in the services your family member needs.

Parents need:

Present and future expectations - Parents want to know what the future holds for them and their family member with chronic problems. Too many professionals address a slice of time (birth to 3, early childhood, transition, 18 to 21 years). This sausage of services is not always linked. Often the parent must be a pioneer every September when school starts. It means getting the new teacher up to where the old teacher was. It means "helping" the school personnel understand the child with disabilities. It means starting all over, time after time after time. Where does it lead? Why doesnít early intervention flow without interruptions into public school? Why doesnít elementary school tie into middle school? Why is high school often a rush toward getting out of school, no plans, no future, no commitment? Parents need the big picture, and not just what is available but what could be available? If these parents needs are not met, or at least acknowledged, then the parent is at risk for getting stuck in feeling powerless, hopeless, and helpless.

When the individual feels that they have choices, even if the choices are not immediately evident, then it is possible to begin to define the life you want. This means that each person defines the life that they want and begins to set forth to determine what happens to their life. This means being an active participant, not a passive recipient of what happens. This means having or developing a network of support. Remember, we are only as strong as our resources. You always get another chance and there is always another choice.

 

 

 


[Back]

 

 Copyright (c) 2000-2004 Functional Resources Inc. All rights reserved.
webmaster@winfssi.com