When I was first asked to contribute to this chapter, I reflected on the myriad experiences and feelings that have emerged as a result of having children with disabilities. This seemed too vast a topic to be captured in a few typed pages. The following is a brief glimpse into my thoughts and feelings about life with my three children. There is much more than facts or history about our lives. There is, of course, emotion—deep and undeniable—and there is poetry. There is the first shed tear of realization that my child will have a life that is more difficult than most. There is the happy smile of childhood shared with supportive therapists and teachers. There is the frustrated panic of adolescence, when social situations are hard and troublesome and the phone does not ring on Saturday night.
Learning about the disabilities of each of my children came at different times in their lives. The impact varied because of the timing of the news and the disability of each child. Benjamin was born on a warm June day in 1971. On the delivery table, the nurse turned the mirror away, and I didn’t understand why I couldn’t see the baby. Everything seemed to happen in slow motion. The physician held him up and announced that he was a boy, but there was a small problem. His right arm tapered from the elbow to a thumb-like digit for a right hand, and his left arm ended in a modified claw hand, having a center cleft halfway into his palm and syndactyl webbing between the outside fingers.
The nurse placed him on my tummy, and he peed a fountain all over the sterile drapes. She said, “That works,” which was comforting, but scary, because I considered that other things could be wrong. It was not until that night when I had him all to myself in the privacy of my own room that I felt the bifid femur of his right leg; the block at his knee that refused to let it extend; the very thin lower leg, which turned out to be missing the tibia; and the clubfoot. I discovered these problems one at a time. The sick feeling in my stomach was guilt. There must have been something that I had done wrong that had caused this. Even though I had followed all the doctor’s instructions, I must have missed something. What would everyone think? I must not be good enough to have a child.
Mick, my husband, and I were lucky to have a wonderful pediatrician whose first advice was exactly what we needed to hear. He told us not to withdraw from our family and friends (alluding to the feelings of shame and guilt that we had not overtly expressed). He told us to allow them to give us support—they would only want to help. The unspoken message that they would not judge us was very important.
And so we started on our journey of new experiences with orthopedic surgeons, prosthetists, genetic counselors, neurologists, urologists, internists, and pediatricians. Later came more professionals, occupational therapists, physical therapists, ENT (ear, nose, and throat) specialists, vision therapists, special education teachers, and psychologists. We searched for answers to “Why?” We searched for options to deal with the issues of discrepancies in leg length and hand function. We searched for resolution to our own feelings. But we were fortunate because, as husband and wife, we never blamed each other.
Mick and I started the journey together, and we have always turned to each other for support. Sometimes it was an “us against the world” attitude and a fierce, protective response that got us through the hard times. When joyous times came, they did so with the realization that it had taken all our efforts to get there. The reason that we have been able to deal with the problems and come out on top is that we have a commitment to each other and a deep faith in God. This statement is much too simplistic for the deep feelings of need, grace, and oneness that we have. This oneness has allowed us to go forward to meet challenges as they have come.
Another reason we have been able to go forward is that we see each of our children as a gift. They are grace without gracefulness. They are charm without all the social skills. They are fun with a sometimes struggling sense of humor. They are individuals who have enriched our lives and given us humility, wonder, and awe at their commitment to living, loving, and succeeding.
Gaining services and resources for our children has not come without pain, questioning, depression, and anger. It has been a struggle that has required persistence and patience. We faced the first barrier when we attempted to find the money to cover the costs of prosthetics for our son. When we were told that it would be better to amputate Benjy’s leg above the knee than to try to keep it and work through the lack of joints and musculature, we were also told about the costs of prosthetics. One of the first things our orthopedic surgeon told us was that we needed to find a source of funding, because prosthetics would cost more than a small house by the time Benjy was 16. I will not go into all the details, but parents have to be persistent if they do not know where to turn to find funds. The doctors have a few ideas, but they are not the best source of information in this area. Agencies and hospitals may have more information, but getting connected to the right person to gain the information is not an easy task.
In the search for money to cover the costs of prosthetics, we approached a well-known agency that worked with individuals who had physical disabilities. This agency had fund-raising campaigns that were earmarked for this purpose. After being told that providing prosthetics was not among its services, and because this was the third or fourth rejection that we had encountered, Mick broke down and joined me in some tears. We were then informed by the agency personnel that we had better pull ourselves together. This was our child and our responsibility, and we had better “face it.” Shame turned to anger as we left. I felt judged, and included in the anger was the fear that we would not be able to provide for Benjy. How could this man judge us? Why didn’t this administrator of an agency that provides services to children with disabilities and parents have more empathy for our situation? If he didn’t help, then to whom could we turn?
This experience made us more leery of asking for assistance. Luckily, the Shriners accepted our application, and they provided most of the funds for Benjy’s prosthetics until he turned 18. I do not want to think of what might have happened if we had not had their help. Dealing with financial issues created a new level of trauma that was added to our earlier pain. Because the Shriners helped with the finances for the prosthetics, we could focus our energy on education plans and homework and hope.
However, what we discovered from this process were the necessary and valuable aspects of networking. It was through work, friends, and family that we made contact with the Shriners. It was through people at school that we were put in touch with the local Special Education Regional Resource Center and became a part of the Parent Advisory Council. It was through many of the parents that we met in these places that we learned about the Ohio Coalition for the Education of Children with Disabilities. It has always been invaluable to us to be able to share with other parents who have similar feelings, frustrations, and breakthroughs. If it had not been for these people and these agencies, we would not have received the valuable personal, educational, and emotional support that we needed.
When my children were small, the feelings about their disabilities could be set aside for the new dream of having the brightest, cutest, most wonderful child with special needs. I dreamed of the well-spoken poster child. These dreams might have also been called denial and led others to believe that I was unaware of the true impact of my children’s problems. In truth, that may have been, but I chose to live with faith.
The feelings do not come from the big picture of the disability. They come from all the little incidents. For example, when Benjy was 12 or 13 months old, I took him out of a nice, warm tub of sudsy water and stood his chubby, slippery little nude body next to the tub so that he could hold on while I toweled him dry. He stood straight and tall on his left leg, but as I watched, he tried to bear weight on his useless, dangling right leg. He bent his left leg so that his right toes touched the floor, and then he leaned forward to see why he could not reach the floor with his right foot. It was a moment of revelation for me. Until that moment, I think that all the focus had been on me: my inadequacy, my problem, my pain. This was harder; it was too deep even for tears. This was Benjy’s life, his surgeries, his pain, and his inability to run swiftly through life. My role was and is to help and support him. Of course, every now and then, I have my own private pity party. However, it is not my pain that is the issue; it is theirs. Somehow, for me, there is a deeper pain in watching someone I love struggle than the pain I feel when struggling myself.
In our minds, Jessica, our second child, had no disabilities through her first 5 years of life. My dream was of a baby ballerina with grace and coordination. She did have four eye surgeries by age 5 (due to crossed eyes, muscle imbalance, and rotary nystagmus). During her preschool years, she attended a church-related preschool. At parent conference times, when the teacher would indicate problems or ask pointed questions about behaviors at home, I would justify Jessica’s performance by telling myself, or Mick, that every surgery sets a child back about 3 months.
When Jessica was old enough to go to kindergarten, we were called into a special conference in which we were carefully told that she was not ready to do so. I did not hear anything else that day. The impact of that statement and the carefully worded explanation was like an icy shower. It was almost as if I had awakened from a dream with a clear vision of how disabled and delayed my daughter really was. I felt guilty and ashamed. I am an occupational therapist, and I know developmental milestones. I had let my doctor and others calm my fears about delays in walking, ataxia, and fine motor challenges because I did not want to believe that this second child of mine could have more than visual impairments. I was in denial for 5 years, helped by well-meaning people who did not want to hurt me.
The night after Jessica’s conference, I received an answer to my prayer of “Where do I go from here?” I attended a presentation by Ken Moses, a psychologist and counselor who writes and speaks about parenting children with disabilities. I then experienced a new step on my journey. He spoke about the grief cycle and how we are grieving not for a lost child but for a lost dream. His discussion supported what I had been feeling and experiencing. The most important factor to me was the permission he gave me to feel the way I did. He emphasized how important denial is in helping us to deal with life-affecting decisions. He pointed out that denial buys us the time to gather our resources so that we can deal head on with problems.
Ken Moses also spoke about the importance of recognizing that anger gives us the energy to take action. Many times, my children’s disabilities required so many appointments, surgeries, exercises, prescriptions, Individualized Education Program (IEP) meetings, and other details that I was left with only enough energy to put one foot in front of the other. I ignored, or put on hold, things or decisions that I should have taken care of immediately. Often it was anger that got me off my duff and sparked my determination to get things done. I learned that anger can actually help as long as it is not turned inward or unleashed on others. I came away from this talk with a sense of relief. To have these feelings was normal, and I was not a bad person, mom, or therapist.
Some parents believe that the word “denial” should not be used to describe parents’ reactions to their children’s disabilities. Instead they assert that parents’ reactions are “hope.” Denial has been a word that has allowed professionals to make judgments about parental actions. They have used the word denial when parents are not following through on something recommended or are having difficulty accepting decisions about educational programs or medical diagnoses. Having been on both sides of the table, I understand the issues. I have what I think is a realistic view that the word denial is not going to go away. Also, the spring of anticipation and hope for each of my children’s futures cannot be erased by a word called denial. My hopes are real and if I choose to live with them, I don’t mind if someone calls them denial. I embrace my whole journey and all aspects of my children. I can wallow with the best of them, dig in my heels, and go in the direction that I believe is right—no matter whether someone thinks I am denying reality. I believe that parents “in denial” need to hold onto their hope and/or don’t yet have the resources they need to deal with their child’s disability. So, dear OTs, give them some!
I have also recently come to believe that the stage, or being, or phase called denial by some comes from fear as well as hope. I have been afraid that I would not do the “right” things for my children. I wanted so much to allow them to be and do their best. I wanted for them to have the “right” experiences. I wanted them to experience the “right” education. I wanted them to be in the “right” situations. I wanted them to see the “right” doctors. In two recent meetings as an OT, as I explained about sensory processing and reflexive movement patterns affecting their child’s ability to stay on task and to coordinate to perform motor tasks, both of the fathers cried. Each of them said that I was describing them, not their sons. They talked about their own experiences and how hard school had been for them. They explained how afraid they had been for their sons because of their own experiences. I told each of them how fortunate that his son had him for a father. Turning from being angry and defensive and letting go of the fears requires courage. Both of these fathers melted. What they heard was an explanation of their child’s differences but explained with a belief in their potential. What I offered were resources and hope. Sometimes the fear in the room is palpable. It is within our ability to restore the link to the melody of hope that lies beneath.
Mick says that he believes, regardless of the words, parents’ behaviors and attitudes are justified: “If the judgment word is denial, parents need that time to buy time to accumulate resources. If the word is hope, they need to be buoyed up out of some of the harsh realities. Empowerment of parents in impossible situations is a noble mission. As parents, we want to be powerful advocates and capable guardians. To do that, we need to be emotionally healthy and grounded in reality. We arrive at that point by working though the emotions associated with our disillusionment, our fear, our anger, and our denial to ultimately achieve acceptance and the feeling of victory at having arrived each time we encounter another in the endless series of emotion-filled transitions of life.”
Decisions are forced on parents. There are medical decisions, therapy decisions, educational decisions, second opinion decisions, and decisions made in the middle of the night and in the emergency room. Some decisions are avoided until the last possible moment. Decision making starts immediately with a diagnosis or with the search for a diagnosis. What doctor should we use? What hospital? What about insurance? How much intervention do we need? How much do we want? What will they think if we say no to this thing that they think is important for our family? Is it important?
When Jessica was in elementary school, we would wait for the bus together. Each morning while sitting on our staircase landing, Jessica and I spent 20 minutes practicing eye exercises. Some days it was easy; other days Jessica would complain, resist, and attempt to divert my attention from the task. One day, when she was 7 or 8 years old, we were doing her exercises and discussing her braces, her eye surgery, and her occupational therapy session scheduled for that afternoon. She wanted to know for the thousandth time why we had to do these things. I explained that we were trying to fix things so she would have an easier time of it. She suddenly looked up at me and asked, “Is there anything about me that you don’t have to fix?” I quickly named all of her gifts and attributes that I treasured. Later, as Jessica’s bus turned the corner, I was left sitting on the steps with emptiness and guilt. I also had a new insight into the impact of countless therapy sessions, surgeries, and home programs.
This incident also made me face another aspect of denial. There is an unavoidable fact that there are some aspects of disabilities that cannot be fixed. I became an occupational therapist so that I could help people and make things better for them. I truly believed (and believe) that I could help eliminate some problems, that I could help heal hurts, and that I could provide training so that people could be more independent. Once I saw Jessica’s problems, I was off and running. I wanted to make up for lost time. Fear drove me to leave no stone unturned if I thought that it would help Jessica get better. As a result of this revelation I stopped doing many of the recommended home programs. I found out that I needed to be “Mom” and others could be therapists. When professionals criticize parents for not following through on recommendations, I tell them that each family has its own story and now may be the time for re-grouping and just being the Mom instead of the scheduler, therapist, taxi driver, MD, or counselor.
Other than their child’s medical issues, qualifying for special education is one of the greatest traumas parents of a special needs child will encounter. It was obvious that Benjy had an orthopedic handicap. However, to qualify for special education, we had to go through an intake process. Benjy had to be tested, and we waited with bated breath. He did qualify, and Benjy attended kindergarten through third grade in a school that had an orthopedic handicap program. He was in a self-contained classroom for disabled children until third grade.
When attention turned to education instead of surgeries and therapies, we found that physical disabilities are more apparent than learning disabilities (LDs). Soon our priorities switched to cognition and classroom skill building. During that time, Benjy was retained in first grade because the teachers had decided that he had a LD. This evaluation provided another chance for the ever-present grief cycle to jump up and bite us. Acceptance of the physical part of the disability was almost in place. However, this new evaluation crushed my new dream of having the brightest, most socially adept physically disabled child. I went through an equally bitter (if not more so) period of blame. Once again, I also feared for his success.
When Jessica was tested, we requested the testing because the preschool had prepared us for the possibility that she would have trouble learning. The school said that it was too early to find a discrepancy, but we pursued it, and one was found. She qualified for the learning-disabled program. For each of the next 5 years, Jessica’s resource room moved from one school to another. This meant that each year, she had to adjust to a new building, new teachers, and new classmates. When Jessica was in fourth grade, we were told to take her to counseling because she was withdrawn and had no friends on the playground. Guess why? When she was in sixth grade, we moved to another district because it had neighborhood schools with special education resources in each building. There, too, the resource room for her particular grade level was not in the neighborhood school. She couldn’t win! She still struggles with feelings of not belonging.
When Benjy was in the third grade, Mick and I decided that he would benefit from being in the regular classroom for most of his instruction. We were a little ahead of the curve regarding inclusion, and our request received quite a response! In 1980, Benjy was a pioneer. That year was difficult for us because we decided to change priorities to allow the learning-disabled program to meet his needs instead of the orthopedic handicapped program. One of the most intimidating places in the world is a room full of educators, including heads of programs, psychologists, teachers, occupational therapists, and physical therapists, and the only people who believe that you are doing the right thing for your child seem to be you and your spouse. Allowing the school’s LD program to meet our son’s needs turned out to be the right decision, but I still get stomach cramps when it is time for an IEP meeting (even an IEP meeting in which I am the occupational therapist).
Mick and I always helped our children with their homework and school projects. I rationalized that their success with their schoolwork would help them achieve in life. Their work ethic for school was high. Unfortunately, because we provided continual support in completing their homework, they never had the opportunity to fail. It is now very clear to me that children have to learn responsibility for themselves and that failure is a vital part of the learning process. I wanted to cushion my children’s self-esteem by ensuring that they were successful in school. However, with the complex pattern of learning and growth, there is no clear path for children who have more challenges than most. Children with disabilities do need more help with schoolwork, but how much is too much? Lessons learned later are just as valuable, but they are more challenging because there is more at stake.
When we find ourselves making judgments about families, a red flag needs to go up. As was pointed out earlier in this chapter, each family has a different structure and different values. Decision making in each family is complicated and sacred. I know many people thought we were crazy when we decided to have a third child. Some were even brave enough to tell us so to our faces. Service providers held their breath, and educators looked for another Ball child in their classrooms. Having another child was a decision about which Mick and I prayed. This time in our lives was like a pause in a heartbeat, filled with hope and fear but also with the knowledge that we were in it together.
Alexander was born on a cold day in February of 1981. He had no physical problems, but he was just as colicky as the other two children. He walked at 9 months and never stopped after that. He was very busy. In preschool meetings, I was the one to point out discrepancies in Alexander’s progress. The teacher complimented me on being accepting, and I carefully informed her that I had been through this twice before and had not been as accepting then. I told her that that was okay, too. My children had not fallen off the face of the earth because it took time for me to face their delays. They were doing just fine, and parents need to be allowed to feel the way they do. However, that does not mean that professionals should not be honest with them!
Receiving sympathetic and respectful honesty from professionals is the only way to know I have all the facts before I make a decision. Honesty is a gift that you, as a therapist, give parents. It does not mean that parents will hear you, follow your suggestions, or even believe that you are always right. But your honest appraisal of the situation gives parents a piece of the picture and the truth that they need to help their child succeed. It helps if you take the time to listen to the parents’ dreams or if you help them put words to those dreams. Many times I could not even express my dreams because they were caught under the lump of fear deep in my soul. There were, and still are, weeks that I cannot deal with the long term. I can only take it one crisis at a time. There are days when I do not even know that I have a dream for my children. But there are other days when I clearly see the life that my children may achieve, and that is where I like to be.
Alexander has turned out to be gifted and learning disabled, with attention deficit disorder and dyslexia. Auditory and visual processing problems and sensory defensiveness completed the picture. His disabilities were identified between kindergarten and first grade, again at our insistence. Alexander continues to reverse letters as he reads and writes. He often reads the end of words first. At age 9, he wrote out, in bold letters on a T-shirt, a commitment to avoid drugs: “Lust say on.” Classic notes left for me on the kitchen counter often told me that his “homework is bone” or the “bog has ben out.”
Alexander’s disability has also been difficult for me and my husband. The feelings of loss and sadness that accompanied identification again resurfaced. Again I had to fight for services. I also had to watch him struggle through years of extra tutoring, vision therapy, and occupational therapy just to begin to decode words. Alexander has borne the burden of being the articulate, social child in the family. He has struggled with feelings of guilt that his disabilities are not as great as those of his siblings. He has received counseling to help him deal with these feelings as well as feelings of his own inadequacy.
However, part of Alexander’s disability was a gift for me. He always needed books read to him for school. When he could not get a particular book on tape or he needed to complete one in a hurry, I spent time reading with him. We have shared insights on comparisons of religions, how Native Americans smoke peace pipes, and how to save yourself if you become lost in the middle of a forest. It has been cherished time that would not have occurred if he had the ability to read on his own.
Recently I heard that old saying, “I’m playing the hand I’ve been dealt.” I think that applies to all of us. It seems to me that everyone has many sources of distress in their lives. We, as the parents of children with disabilities, often focus on the delays and the fears. We should be allowed to feel the feelings that are associated with this situation. However, I think that you’ll find that most of us are proud of our children’s accomplishments: learning to put on a prosthesis independently, learning to turn a somersault, or hitting the right key on the keyboard to match the computer screen.
There are some things our children will never be able to do, activities they choose not to attempt. Jessica has chosen not to pursue bike riding. Benjy has chosen not to alternate his feet on the stairs. Alexander has chosen not to read piano music. All of these things would be next to impossible for them, but I never told them they couldn’t do them. Parents are always in the position of encouraging the impossible. However, the reality is that it is the child who will ultimately determine what he or she can or cannot do. We have made and will make many mistakes parenting our children with disabilities, but we refuse to let their disabilities limit the possibilities.
I remember crying over The Velveteen Rabbit when I read it to the kids. It seemed that the problems of my children kept them from being “real” too. I knew that all the love I was showering on them could not change their physical makeup; however, I also knew that the love I was showering on them might help them cope with their “realness.” Benjy has told me that he will run in heaven, and I believe that. I also know that all three of them run in their hearts every day here, and that others seeing them are challenged to be more themselves.
As part of my job, I was asked to evaluate a student who had hands similar to Benjy’s “claw” hand. He had a hearing impairment, and the special education team met to determine how best to serve him in the school setting. When we sat down in the meeting, one of my colleagues made a comment about his hands. She said she couldn’t understand why his parents didn’t have his hands “fixed”—they looked so strange. I sucked in a breath and my heart pounded. I could not respond. I felt immobilized in my chair, without a voice. How did my colleague have the right to judge that the boy’s hands needed fixing? My pounding heart was accompanied by the resounding thought, “He has a right to those hands, his hands. He has a right to be different.” In part I had these feelings because I had evaluated his hand skills and knew that despite how different his hands appeared, he was able to use them skillfully. Only after the meeting was I able to express what I thought and felt. I realized that this person had made the comment because she thought that “fixing” his hands would take away the staring and teasing that always accompany looking different.
To express my feelings, I wrote my colleague a letter. In it I explained that my husband and I had made the decision to increase function in Benjy’s left hand when he was 7 months old, wishing it would look more like everyone else’s. It was hard to admit that I had those feelings. I told her that Benjy’s right arm, which we affectionately call “Super Pinky,” will never look like everyone else’s. I told her about the scars on his hand and the scars on his wrist from the site where the graft skin was taken. I talked about Benjy’s surgery allowing for a little stronger grasp but not full extension or flexion. I told her that the young man about whom she had commented had an adapted grasp for scissors and functional cutting skills.
My letter also explained that this is a bigger issue than hands; it is about attitudes. I see our roles as professionals who work with children who are different as teaching not only the children, but also everyone else. The message about our kids needs to be that different is not worse, just different. I know that people have the capacity to be open to difference. If we lived in a perfect world, all differences would be OK, and we would not feel that we have to fix them. However, we live in the ever-present face-lift, nose fix, and “Extreme Makeover” society. People are judged on their appearance. Part of our role as professionals is to learn to accept differences, particularly in appearance, and not to try to fix everything. Our job is to help others understand that different is not wrong. This is a very simplistic view of a complex problem.
When I told Benjy about the incident, he said, “That person is not cold. She just doesn’t know all the facts. If God wanted everyone to look like everyone else, He wouldn’t have made handicapped people. There have been times when I wanted to look like everyone else. True people are the ones who remember you for more than your physical side, and that’s what really matters. True people are able to look at you and not think you are different, but that you are unique.”
Benjy is now 31 and has married a young lady with spina bifida. He has a new diagnosis of spinal muscle atrophy. He is gradually losing function in his remaining leg. He and I are in denial about this, but we know that we have always taken one day at a time. He and his wife are working toward independence in all areas of their lives. Jessica is working in a grocery and has had several poems published. Alexander is a carpentry apprentice, married to a wonderful young lady, and has a beautiful daughter and a new son. As parents of children with disabilities, we continue to be very involved in our children’s lives beyond the usual time. My dreams for them remain the same as when they were small: that they will be happy, that they will be as independent as they can be, and that they will always have someone who loves them. As the kids have grown into adults, we have had to practice involvement and support—without control. We also continue to deal with emotions, because the disabilities our children have are for life.
In all stages and at all ages, families of people with disabilities value support and resources. If you take the time to hear a parent’s dream, you may hear the sound of laughter and tears. You may hear the strong heartbeat of anger or the resistance to a life that is less than it could be. As a therapist, you are a gift to the parents whose lives you touch. You have a solution to some of their frustrations. You can help uncover the hope. You have the opportunity to be as honest as you can be and provide them with the information they need to make decisions. You have the answer to some parent’s question.
Beth Ball is the mother of three children with disabilities. She is also an occupational therapist and has worked in the public school system for a number of years.