Excerpted from chapter 2 of Nobody's Perfect: Living and Growing with Children Who Have Special Needs, by Nancy B. Miller, Ph.D., M.S.W., with "The Moms": Susie Burmester, Diane G. Callahan, Janet Dieterle, & Stephanie Niedermeyer

Copyright © 1995 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Surviving is what you do to keep going when you are feeling completely helpless because something totally out of your control has taken away your child's equal chance at life.

When you first learned that your child was going to need special medical, educational, or therapeutic interventions, you probably felt pretty overwhelmed. You had something new and frightening to deal with, and you had to begin adapting to an uncertain future. The first stage of your adaptation is called Surviving. Everyone Survives in different ways.

What Is Surviving?

Surviving Is Different for Everyone

You may have learned your child would have special needs even before he was born--through prenatal diagnosis. You may have learned your child was going to have special needs abruptly and traumatically at birth or as the result of an illness or injury. Or you may have learned about your child's special needs gradually, one anxious step at a time as your child may have showed signs that something was not going right. You may have noticed delays in learning or development, unusual behavior patters, or repeated medical problems. You may have adopted your child with the knowledge that she would be at risk for or have special needs, or you may have married into a family to become the step-parent or an adoptive parent of a child with a disability. You may be a foster parent for children with special needs.

It may not matter if this is your first child, your only child, your natural child, or if you have a boy or a girl. It may not make a difference if you are a young parent, an older parent, a single parent, or if you plan to work or stay at home.

The nature of your child's special needs and their severity don't make them any easier or harder to deal with. Having a specific diagnosis may not make it harder than just knowing your child is "at risk" or is "slow to develop." When and how you learned your child has a problem doesn't make the process of adaptation easier or harder; the attitudes of your extended family, your cultural group, or your religious beliefs may make adaptation easier or harder. There are no "right" ways of getting through this initial stage. You Survive in your own time and your own way.

Diane: They told us she would have some paralysis. But all the professionals were so positive. They said this has happened but things can be done. She may never walk, but she can use a wheelchair. We were trying to be positive. I never thought, "Why me?" I knew we were starting down a long road; we had a lot of questions that couldn't be answered then. All we could do was to take things a day at a time.

Janet: Sometimes I fantasized about running away. Starting over with a false name. In each fantasy, I would escape to a different place and imagine living there--Paris, Tahiti, even Antarctica sounded appealing. No one would ever find me again. Those thoughts lasted only moments, but they were coping mechanisms that somehow got me through.

Stephanie: Having a child made me feel more responsible, and she inspired me. Emma couldn't do anything but lie there and smile as I sewed clothes for her and made a quilt and dolls. We had no clue as to her potential, and there was no use worrying about that. I was her mother one day at a time.

Susie: Those beginning months still terrify me to think of them because there is so much I don't remember but raw fear. I was frightened all the time. I remember a mom saying she wanted to go to the bathroom or go for a walk or go somewhere where she wouldn't feel constantly frightened about her child, but there was no place.

When you become aware that your child has a problem, is developing a problem, or is at risk for a problem, you begin to deal with this information in two ways--you cope and you react.

Surviving is Coping

Coping is doing what you have to do one problem at a time. Sometimes you may feel like you are trying to empty a flooding boat one bucket at a time. You may have to make decisions without feeling very informed or confident. You have to deal with specialists in fields you've never even heard of who give recommendations you don't understand and with interventions that are said to be necessary. You may barely cope with all this, or you may handle it all very well, possibly even better than you would have guessed.

When you are thrown into your new role as the parent of a child with special needs, you usually don't know anything about developmental delays, chromosomal abnormalities, cerebral palsy, seizure disorders, hearing impairments, learning disabilities, openings in the spine, or cleft palate--just to name a few. You might know something about developmental milestones--that your child would sit up at about 6 months and walk at a year or so. You know there will be some problems (after all, nobody is perfect) like sleeping problems, changes in your lifestyle, and increased expenses. Your expectations are to send your child to preschool, to see the pediatrician for regular checkups, and to struggle through toilet training and the "terrible 2s." Little did you know.

In less than a year, the four mothers in this book were collective experts on gavage feeding, suction machines, cleft palates, club feet, gastronomy tubes, hospital admission procedures, insurance forms, tracheotomies, heart monitors, breast pumps, Pavlik harnesses, chromosomal abnormalities, shunts, orthopedic and neurological surgeries, blood tests, EEGs, and so forth. They had consulted with obstetricians, pediatricians, neurologists, orthopedists, gastroenterologists, cardiologists, nursing specialists, genetics counselors, social workers, nurses, emergency room technicians, lab technicians, physical therapists, occupational therapists, early intervention teachers, and many more professionals.

Coping is dealing with problems and getting by. Coping always feels like you are just keeping up with what you have to do, with little energy for getting ahead of your problems. This is because, while you may be coping with everything, you are using most of your energy to deal with your emotional reactions to your situation.

Surviving Is Reacting

Reacting drains your energy and diminishes your feelings of control over your life. You have no sense of direction over this turn of events in your life. You are trying to figure out what's going on and what to do next. Your reactions may range from confusion to fear to incompetence and may be accompanied by feelings of grief, anger, guilt, and helplessness.

Even if you have no uncomfortable or negative reactions to the fact that your child has special needs, there are many other aspects of this experience that you may not have expected that may frustrate and disappoint you. You may find that the services your child needs are not readily available, that family members or friends may not initially support you, or that your child's problems are more extensive than you anticipated. Later, as you move beyond Surviving (and you will), you will react in different ways with a greater sense of self-confidence and control. But, in the beginning, you feel more emotionally fragile and vulnerable and you often react with surprise, shock, and sorrow as you begin to realize that nobody is perfect.

The Reactions of Surviving

The reactions described below are normal and often necessary. They are not "bad," "wrong," or "weak." They are the way many people feel upon hearing sad or frightening news. You may have experienced all of them or none of them. But anyone who tells you that you "shouldn't" have any of these reactions has not been where you are. No one has the right to judge how you feel. The reactions are temporary, although some stick around longer than you'd like. Most of the feelings get resolved or fade as you find yourself ready to move on and as you begin to feel you have control of your life once again.

Shock

Surviving begins with a state of shock. Shock is numbness, disbelief, and disorientation. If you are in shock, everything may seem "unreal." Shock is a normal reaction to a traumatic or major loss--be it death, disaster, or diagnosis. It is a devastating blow to be told that your child may be prevented from growing up with a healthy, working body; an intelligent, creative mind; and the same hopes and expectations to marry, have children, and be as self-sufficient as any other member of society.

Shock is a physiological reaction to protect your body and mind from being overwhelmed. (You can't "decide" not to feel shock. Your body will feel it anyway.) During a state of shock, your reaction times are often slowed; you may think you're losing your memory (or your mind); you may find yourself experiencing extremes in areas such as eating and sleeping; and you are at higher risk for accidents and injury.

Bodily Stress and Symptoms

Fatigue

You may be feeling tired from lack of sleep, restless sleep, or the worries you are carrying around inside you. You may want to collapse from unending fatigue--to crawl under the covers and stay there forever. You go through the motions, making it until nighttime again, and trying to keep going. The only thing you look forward to is sleeping.

Physical Symptoms

You may experience headaches, lightheadedness, stomachaches, chest pains, loss of appetite, lack of sexual interest, and other physical symptoms while you are Surviving. Stress can cause physical problems or make them worse. Even if you think they are caused by stress, physical symptoms are real and must be taken seriously.

Feelings of Weakness, Fragility, and Vulnerability

You may feel weak, fragile, and vulnerable with unpredictable emotions and behavior. You may cope well some days and then burst into tears in a grocery line. Not only do you feel helpless about your situation, but you can't even predict and control your own emotions and behavior. You may break a fingernail and dissolve into tears and think that maybe you are losing it and going over the edge.

Susie: I could evacuate a planeload of people, but I fell apart when Betsy spilled her apple juice.

Grief and Loss

Grief

You may feel grief for the loss of a dream about your child, yourself, your spouse, and your family. Your expectations and fantasies about your child's future are thrown open to doubt, and in their place you may have fear and confusion. You grieve for your child who deserves the same chances in life as anyone. You grieve for what your child may never be able to experience.

Feelings of Helplessness and Aloneness

Surviving is an intensely personal journey. You may not be sure what to say to people, and you don't know what they expect from you. If you are fortunate, you can talk about your feelings with your partner, a friend, or a family member. But there is a part of it that is only yours and that you must deal with alone. Sometimes it is hard to know when and how to turn to others for support.

Diane: I kept waiting for the alarm to ring and wake me up. It was like being in a fog--nothing to grab onto; I couldn't even see where I was going, and I felt so alone, even though I knew others were out there somewhere who would help me through this.

No one can totally understand what this is like for you. Sometimes you may feel like a helpless, incompetent victim. You may feel drained and lifeless, yet that you must keep going. And, when you're at your weakest, you often have to be strong for others.

Janet: I knew I was strong enough, but I didn't want to be. When I told my mom this was a tragedy, she said, "This isn't a tragedy. It's hard, but it will get better." She told me how proud of me she and my dad were. She told me how well I was handling this difficult time. Well, I was tired of handling it.

Sadness

Sadness is a normal emotional reaction to events, thoughts, stories, or memories that remind you of a loss. You may feel sad about changes you are having to make in your life or thoughts about what your child may not be able to do, or how you will tell the news to your friends and relatives. Sadness comes and goes and sometimes lingers, and you may cry at unexpected moments.

Diane: When Catherine was 8 months old, I contacted the Spina Bifida Association and visited a mom with an 11-year-old girl. We went to their house, and the girl was walking around with braces and crutches. She went to regular school, lived a normal life, and was attractive and friendly. But all I could see was the crutches. I really tried to hear about the normal stuff, but I was so sad that all I could think about was that she couldn't walk like other kids. The mom said, "You'll get past this. The hardest part is the surgeries."

Depression

Depression is a chronic mood state that may affect your eating or sleeping (too much or too little). You may have no energy and feel as though you are moving through a cloud of gloom. Some depression is a normal part of grieving and loss, but prolonged depression is a signal to get professional help and get it soon

When you are sad, you know it will pass; depression feels like it will stay forever. When you are sad, you can usually carry out daily routine through your tears; when you are depressed, you may not even get out of bed.

Janet: Ryan was 10 months old and I was getting housebound. If Chris didn't push me to go out, I'd just sit there. If my family hadn't taken us places, I wouldn't have gone. I was so depressed, I avoided doing anything. I knew there was more to life than this, but I was focused on Ryan. Chris didn't say much. He'd fix dinner and I'd say, "I'm not hungry'" and he'd say, "Well, you can't not eat forever. You can't be sad forever. Besides, look how cute Ryan is."

Confusion and Fear

Confusion and Chaos

While you are still adjusting and adapting, wishing for things to settle down and for some peace and quiet, you may find your life filled with doctors' appointments, sleepless nights on surgical floors, and sleepless nights at home. And you are always vigilant--watching for signs from your child that the problem really isn't there at all, that it somehow went away during the night. You may feel that you must keep going--you're not sure where, or why, or for how long, but you're afraid to stop.

Uncertainty and Ambiguity

You may experience uncertainty and ambiguity about what is wrong, what to do next, and not having much control over anything. In the beginning, it is frequently hard for professionals to tell you the cause of your child's problem, the extent of disability, and what kind of interventions will be effective. No one can tell you how it's all going to turn out.

Janet: For about a year, the other Moms called me Miss 409. Everything was so uncertain about Ryan, so keeping a meticulous house became almost an obsession.

Fear

You may experience fear for your child's health, for your child's development, and for how this will affect your family. You are afraid your child will need more from you than you will be able to give. You may be afraid your marriage can't weather this challenge. If you are a single parent, you may be afraid this is too much to handle on your own.

Fears may race through your mind about whether you can afford this, what your insurance will cover, whether you will be able to keep working, and how you will find the right services for your child.

Diane: My major feeling was fear. Fear for my child and her future. Fear that I couldn't handle this--and I didn't even know what it was I was having to handle.

Preoccupation with Your Child

You may be preoccupied with your child with special needs to the extent that you are unable to take care of anyone else, including your partner, your other children, and yourself. You are so concerned about your child that she comes first, and you resent anyone who might suggest that you take a break, go out for dinner, or do something "fun" for yourself.

Susie: One day I looked in the mirror. I didn't look so good. Was this the person who used to like to go out in public, who was fairly gregarious at parties? I felt so beaten up. Every time I turned around there was another medical crisis or relatives were coming over and I felt like I had to look strong. My clothes were hanging on me. I didn't look like what I had been. I was a totally different person inside, and it was beginning to show on the outside.

Worrying

You may worry about the future, about what to do next, about doing the wrong thing, or failing to do the right thing. You worry about your partner, your other children, and whether to have more children. You worry about money, insurance, medications and their side effects, and that your child will get sick or won't get well. You can't sleep because of your worrying and that worries you. And you worry that you worry too much, but you can't shut off your brain, and that worries you, too.

Asking Questions that Appear to Have No Answers

Life seemed so simple before. You never asked questions like "Will my child be 'normal'?", "Will he be able to walk (or talk, or think, or see, or hear)?", "Will she be okay if she isn't able to walk (or talk, or think, or see, or hear)?", "What will his life be like as an adult?", "What if something happens to me?", "Am I doing enough?", and a lot of questions that begin with "Why."

Janet: How could God let a totally beautiful act of love result in such tremendous problems for Ryan? After all, we had planned for this baby. We purposefully created a life and then in an instant, everything you believed your whole life was brought into question.

Guilt and Self-Doubt

Guilt

Feeling responsible for your child's problem is one way of trying to understand what went wrong. It's taking the blame because if someone can be blamed, at least you'll have an explanation. And for the mother who carried the child, who is more likely to be at fault? You may remember your pregnancy--how you worried if you were doing everything right. What guilty little secrets do you carry that you fear have caught up with you? Skipped your vitamins? Should have stopped working sooner? Was it working at that computer screen? Maybe it was the day you went to your friend's house and they had just sprayed for termites. The "shoulds," "what ifs?", and "if onlys" go on forever.

If guilt is familiar to you, you probably feel guilty about having many of the other feelings described here. Some parents feel guilty about feeling angry and about feeling fragile--and about feeling so guilty.

Susie: The guilt was a whole other thing. I knew I must have done something. I must have taken something, drunk something, eaten something, breathed something, or exercised too much. What did I do? It had to be me. I was her mother. There was no doubt in my mind. I was at fault.

Stephanie: The doctor told us her condition was the result of a chromosomal abnormality, and they had no idea what caused it. I felt so guilty. I can't believe it, but I actually asked him if it was the tuna sandwich I ate while I was pregnant. That stupid tuna sandwich had haunted me. When he said the problem occurred right at conception, I felt a surge of release from all that guilt.

Self-Absorption, Self-Pity, and Self-Doubt

There are so many questions you are trying to answer about what happened, what you might have done to prevent it, whether you have the ability to take good enough care of your child, and what to do next for your child, your family, and yourself. And you may feel very sorry for yourself--even if it doesn't last long and even if you never admit it. Your self-esteem may hit rock bottom for a while.

Janet: Self-esteem? When I heard the word I had to go look it up.

Shame and Embarrassment

In the history of human societies, the continuity and strength of a cultural group often depended on its members being healthy and able to contribute to the everyday economic needs of the group. Giving birth to a child who might be a liability to the group--sometimes because of a disability and sometimes if the child was the wrong sex--brought shame to the family. In some cultural and religious groups today, there continue to be feelings of shame and embarrassment when a child is born with a disability. In some countries today, children with disabilities are hidden away or institutionalized, with few, if any, services available to the children or families.

Old traditions and attitudes change slowly, and in some families in our society, feelings of shame persist. A child with a disability is seen as defective, flawed, and a disgrace to the family name and reputation. In some groups, there are traditional cultural or religious beliefs that explain the causes of disabilities, often adding to feelings of guilt and shame in the family.

People you don't know (and sometimes people you do know) may ask you questions or make comments about your child's appearance or behavior that make you uncomfortable or embarrassed. Some discomfort is natural when this is all new to you. You may not yet know how you feel about having a child who looks or behaves like a child who has a disability.

Anger

Anger can take many forms. You may feel a general "Why me?" anger, or it may be more specifically directed at someone--the obstetrician, the delivery team, the hospital staff, the person who gave you the diagnosis, the person who didn't give you the diagnosis, your partner, or your child.

Resentment and Envy

Resentment and envy are forms of anger. Some parents resent their friends or relatives who have "typical" children. They find it hard to be around other parents who compare brands of diapers or complain about teething. They become aware of a shift in priorities and feel out of sync with people they have been close to for years.

Susie: I didn't think I was allowed to get angry.

Janet: I remember thinking that life isn't fair. We're brought up to think if we do good, life will repay us. So, therefore, if something like this happens, I must have done something wrong. And that made me angry because I thought of all the things I did right during my pregnancy, and look what happened to my son.

Diane: I got angry at the doctors because no one told me the normal things like how much Catherine weighed. Their focus was totally on her problem, and no one put it into any perspective for me.

Blaming

Blaming allows some sense of control if you can find someone who made this happen. It gives you someone to be angry at--whether it's your child's other parent, your obstetrician, or the hospital staff. Sometimes specific blame is clear; there are cases of malpractice and negligence. In most situations, however, there is no one to "blame."

Feelings of Betrayal

You entered parenthood with the expectation that life was pretty much fair and that you would have a child that wouldn't be perfect, perhaps, but close to it. You felt as entitled to that as anyone, and it may feel like a promise that has been broken or a trust that has been betrayed.

Janet: I re-read some parts in the pregnancy books to see if I had skipped a chapter. I soon found I hadn't skipped a thing. People don't often write about true sad things that happen unless there is a happy ending or unless the situation is over. For me, it was just beginning, except I didn't know what "it" was.

Denial

Denial is a protective device that our minds use when we are not ready to deal with a problem or its implications. The two kinds of denial are chosen denial and unconscious denial.

Chosen Denial

Chosen denial is characterized by "if I ignore it, maybe it will go away" thinking. It may be a creeping feeling that "something is wrong," but since your pediatrician said not to worry, great. You didn't want to believe it anyway, and no one else has mentioned it. You may even have a pretty good idea of what "The Real Truth" is, but you're not in the mood or a state to deal with that right now (thank you very much), and you will deal with it when you have to. You may say, "Today is Tuesday, and I have too much to do to dwell on this problem, so it will not exist until Wednesday."

Stephanie: It's the Scarlett O'Hara school of thought: "Tomorrow is another day."

Susie: It's appropriate and healthy to screen out the stuff that's hard to deal with. You don't have to vanquish every single challenge.

Janet: And you'll deal with what you have to. What's the rush?

Stephanie: It's easy for someone on the outside to say you're denying--as if you're blocking it all out.

Diane: You always know it's there. Sometimes you just have to take a break from it.

Unconscious Denial

Unconscious denial occurs when you look at the facts and really believe they aren't true or when you call them something else. Sometimes denial is very useful, but it may be harmful to your child if it results in the delay of a needed medication or other intervention.

Some parents deny a little; others deny a lot. It's easier to deny a problem if you can't see it. It's easier to deny if you hang around people who help you deny by minimizing the problem. It's easier to deny if you call it something else.

Susie: I would say, "She's not mentally retarded; she has a developmental delay." A delay sounded like she would catch up, and that's what I wanted to believe. Retarded was permanent, and I wasn't ready to deal with that yet.

You may see all sorts of signs that your child is not half as bad off as others have reported. Other people, such as friends and relatives, may unwittingly reinforce your denial by not saying anything. They may suspect there is a problem but are afraid to be the first one to say anything and want to protect your feelings.

Easing the Surviving Process

You may find yourself in this most unpleasant stage of Surviving for weeks or months. The feelings described above may come and go at expected or unexpected moments, they may linger; or they may enter your mind and quickly pass away. You may not experience some of them at all.

Understand that Your Feelings Are Normal

Sometimes you may need to let it all hang out, to weep, to yell, and to feel very sorry for your child and for yourself. Knowing that these feelings are a normal part of the process can help you as you meet other parents in your situation. It increases the "honesty factor" when you don't have to present a facade that you are feeling great and have "it" all under control.

Remember, everyone is different. Some parents adapt easily; others carry feelings of anger or sadness for many years. For many parents, this stage occurs in fits and starts--a real roller coaster ride with no predictable pattern and no easy formulas.

Life does go on, and as you are able, you move along with it. In the meantime, know that the process of Surviving is normal and necessary and that you will pass through it. If you feel "stuck" with any of the feelings or if they are unbearably intense, you may need some extra help. There are professional therapists and counselors who can be supportive, nonjudgmental listeners and offer suggestions for easing your pain.

Make Time for Yourself

You may have been thrown off balance, and of course you are going to feel bewildered, confused, annoyed, and whatever else comes to mind until you regain some sense of control over your life.

As you understand what's going on, you can learn to anticipate when you may be thrown off balance again, plan ways to prevent or lessen some of the discomfort, and find ways to take care of yourself during the process. If you don't take care of yourself, you can't take care of anyone else very well. Some of the ways to take care of yourself may include the following:

• Make time to be alone--to grieve, to heal, to think, and to rest your mind.
  
  
• Make time to be with your partner to nurture your couple relationship.
  
  
• Make time to be with your other children and keep their lives in balance.
  
  
• Make time to be with friends who understand and support you.
  
  
• Make time to exercise, to have fun, and to keep your own sense of balance.

Use Your Supports

It's often tempting to shut other people out of your life and to feel that you have to carry out your responsibility alone. You may want to close the drapes and stay inside--maybe forever. But try not to reject the people who are reaching out around you. Relatives, friends, neighbors, and coworkers often want to be there for you, but don't know what to do and don't want to impinge on your privacy. This may be an uncomfortable time for others, and they may need you to help them feel comfortable and useful. You may need to tell them what you need, what to do, and how to help.

Consider joining a parent support group. Initially, some parents find it difficult to share their situations with others, and some parents find that listening to other people's problems is too painful. Connecting with other parents who understand (better than anyone else ever will) what you are going through, feeling their support, sharing resources, and problem solving with them can be one of the most important steps you ever take.

Turning Points from Surviving to Searching

At some point, you will notice that several things begin to stand out very clearly.

1. You know you need a sense of direction--a focus. You need some goals.
   
   
2. You are tired of just coping with each problem that comes up.
   
   
3. You know you have to get assertive, get some information, and do some work.
   
   
4. You can no longer just react. You have to take action that has purpose.
   
   
5. You feel a new energy and sense of purpose.
   
   
6. You care about how you look.
   
   
7. You realize it could have been worse. The world did not end.
   
   
8. You are becoming aware that you have to be your child's advocate.
   
   
9. Your priorities about what and who are important in life may begin to change.
   
   
10. Your values about what is important in life may begin to shift in new directions.

How and when do these realizations occur? Sometimes they are gradual, sometimes dramatic. Some people need to hit bottom before they can break free. You may see a turning point in your child's progress; you may be influenced by the words of someone important in your life; or your own convictions may win out over the advice and predictions of professionals.

Janet: One day I sat on the couch all day. I envisioned what it would be like if I went back to work--laughing, talking with friends, bringing home a paycheck, getting things for the house. I saw myself as I was--staying at home, taking Ryan to 550 doctors, cleaning the house, being alone. By the end of the day, I knew I had to go back to work. It was the best thing I ever did.

Susie: Six weeks after Betsy was born the relatives were visiting. I was serving coffee and cake and holding our daughter up and serving more coffee, and the whole time I was dying a death inside. My aunt, a little teeny woman 80 some years old, came up to me and said, "My dear, this too shall pass." That was one of the most important things ever said to me. At that moment I knew that things may not be okay, but they would be different. And that part I could control.

Turning points signal the end of the Surviving stage. Life does go on. You are no longer a passive victim, able only to react to your situation and to others around you. You are able to find new energy, direction, and purpose and to begin taking action instead of only coping with problems as they occur.

This does not mean that all the feelings disappear and you are free of them forever. Some will linger and some will re-appear, but you will handle them differently as you know what they are about. This is because in this process, in your continuing growth and development, you will become better acquainted with your strengths and your weak spots, and you will be better able to control how you react to future situations.

When you have regained a sense of control over your emotions (and you will), and have gained a sense of direction (and you will), you will have gained a new perspective about life and you will have new priorities and challenges. You will know you have Survived.

Being in a state of Surviving doesn't last forever. It just seems that way at the time.