Children who are chronically ill, physically challenged, or who suffer from learning difficulties need our RESPECT, not our PITY. When we pity children, we feel sorry for them, indulge them and, in the process, actually show them disrespect.
When faced with children’s illnesses or birth defects, parents can easily lose sight of their children’s uniqueness and concentrate primarily on dealing with their medical “problem.” In our zeal to do the right thing, we can become oblivious to the ordinary developmental and emotional needs of our child.
But, isn’t having pity on people the same as having compassion for them?
No. When we pity people, we don’t really see them. We allow their illness, or their handicap, to blind us to their ordinary needs as human beings. When we have compassion for people, we understand them as individuals who have needs like us, not only those posed by their particular handicap.
PARENTING A CHILD WITH SPECIAL NEEDS
It is rare for parents of a child with special needs to know intuitively not to let their child’s “problem” dictate their parenting agenda. And then there are always those family members who are waiting to criticize us for not being more indulgent toward our “poor child!”
Parenting, the world’s most important profession, requires more than love; yet few of us have undergone any training for it, beyond what we experienced as children ourselves.
Parents of children who are chronically ill, or have special needs, characteristically question whether they are asking too much of their child or if they will damage them by making “unreasonable” demands. Adding to their “parenting dilemma” is the preferential treatment they must give their child with special needs. They ask themselves and worry about how that extra care and attention might be adversely affecting their other well children.
What is the source of this natural urge to indulge children with special needs? Our own unacknowledged feelings!
Guilt. In order to parent effectively, we (whether our children are healthy or have special needs) must first recognize and understand our own feelings. Should we remain blind to them, we will be more likely to rely on “pity” when deciding how to respond to our children.
It is natural for the parents of children who are born with a congenital defect, or who develop a chronic illness, to search for explanations about why such a tragedy befell them. “Did we do something to cause our child’s problem? Perhaps we could have prevented it? Should we have called the doctor earlier or not gone out the night of the accident?” The questions are endless and the guilt overwhelming. If, in addition, the problem is hereditary, or was caused by an accident for which a parent was responsible, the pangs of guilt become unbearable.
And with time, guilt burrows deeply and causes no end of suffering. Indeed, it often causes us to “compensate” for our imagined or real role in causing or, at least, in not preventing our child’s illness or impairment.
Omnipotence. While we do play a major role in the social and intellectual development of their children, we cannot take credit for ALL of our children’s positive achievements; some belong to them alone! Nor should we take upon ourselves all the blame for our children’s negative outcomes—physical, cognitive, or emotional. If we do, we will feel compelled to do everything to relieve our child’s distress, thereby depriving them of the opportunity to learn how to cope on their own. Children, whether they are physically and mentally well or impaired in some way, are unique human beings. We must honor that individuality, in all its splendor, and refrain from taking too much credit!
Anger. One can feel angry, without acting upon it. Anger, the feeling, is a natural human response. But many parents of children with special needs don’t even let themselves feel the anger that all parents experience toward their children. If we never feel anger toward our children, but repress it, how will they learn to handle that awful feeling? Well, they probably won’t and, as a consequence, will likely develop a passive-aggressive style of behavior that is manipulative and irritating! Raising children is difficult, regardless of whether they have special needs or not. Parental anger is natural. What is not acceptable, of course, is acting upon that anger by hitting or deriding our children!
And what happens to that anger that we repress? Psychoanalytic theory suggests that we “compensate” for it by becoming overly indulgent and concerned toward that which aroused our anger!
Below are the stories of two children with whom I have worked. One child (Avi) was indulged and pitied; the other (Shai), who had multiple medical problems, was treated like a child without problems.
Giving Priority to the Problem. Avi (21), the eldest of three children, was only eight years old when he began thrice-weekly dialysis treatments. Because of his illness, Avi is much shorter than his two younger sisters and looks and behaves like a nine- or 10-year-old boy. At 14, Avi became clinically depressed after an unsuccessful kidney transplant. His parents rarely set limits for him and indulge him excessively. When a younger sister recently fell in love with the tutor who came to Avi’s home several times a week, he demanded that they stop seeing one another. Their parents agreed!
Although Avi “completed” high school, his knowledge is limited; teachers demanded little because of his illness. He has no friends.
In the Dialysis Unit, Avi’s compliance is poor. He tries to shorten his dialysis sessions and complains about his treatment by the dialysis nurse, who sets very clear limits for him. “Only you don’t pity me!” he once shouted at her. When she asked who does pity him, Avi answered, “In school, my teachers took pity on me and excused me from classes and exams that were too hard for me. They let me come late because they knew I was sick. My parents also take pity on me. They give me whatever I ask for. My sisters have to give in to me because I’m sick! So why aren’t you considerate of me too?!”
Today, Avi does not look for work, despite having successfully completed a course in computer graphics. He refuses to follow his diet because, “I don’t like to limit myself.” Avi does not take responsibility for his behavior and is often in conflict with the staff.
Avi’s parents have consistently refused to learn how to set limits for their son. Today, Avi is an unhappy young man, who is socially isolated and actively disliked by those around him.
Giving Priority to the Child. Shai (10) has been blind since he was a toddler. When he was six, he underwent surgery to implant a CSF (cerebral spinal fluid) shunt (a tube that drains excessive fluid from the brain to the spinal cord). Shai underwent kidney transplantation at the age of seven.
Shai’s parents have assigned him household chores along with his siblings. He rides his bike in the yard, takes care of his own needs independently, and even goes to the movies. They do not make excessive concessions for him and have avoided giving him the feeling that he has special rights because of his problems. Shai’s mother reported that she expects Shai to clean his room by himself, “Otherwise, he won’t be able to find his things!” Shai is a regular member of his family, not the most important one.
When I asked Shai’s mother how a child with so many problems could be so “normal,” she explained that she and Shai’s father decided to make every effort to assure that their son would live as normal a life as possible.
Today, Shai is a happy, imaginative, intelligent and independent child, for whom the clinic staff wait with anticipation at the time of his monthly visit.
Shai is living testimony to the importance of not letting pity blind us to the needs and innate strengths of children with special needs.
As parents, we must be honest and recognize our unexamined feelings regarding our special children. We can expect to feel anger at our child with special needs, or at the universe, because it is a natural, human reaction. What we can throw away is the guilt and feelings of omnipotence that cause us to react in unnatural ways to our children. Guilt only causes problems and omnipotence is a kind of arrogance.
An added benefit of indulging our children with special needs less is having the time and energy to give a bit more prominence to the needs of our well children. They have been so understanding, but many have experienced a degree of emotional neglect.