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Handling Life-Long Grief and Feelings of Loss

Chapter 2. Handling Life-long Grief and
Feelings of Loss
Tools for Parents of Children with Special Needs
By: James J. Messina, Ph.D., CCMHC, NCC, DMHCS

Parents of children with special needs experience grief or loss feelings over the entire life time of their children. This grief is felt more acutely at the points of transitions in their children's lives.  It is imperative that parents recognize that this is a normal phenomenon and that it is best for them to prepare themselves in advance when such transitions are to occur.

What follows is just a sampling of the different transitional events in the lives of children with special needs to compare and recognize what grief-loss events you have already experienced and what future loss events are involved in having a child with a special need.

 Birth and Preschool Years
 Loss involved:
 1.  High-risk pregnancy
 1.  Loss of the anticipation of a healthy, non-eventful pregnancy
 2.  Premature birth
 2.  Loss of anticipation of a full-term birth
 3.  Cesarean section
 3.  Loss of anticipation of vaginal and/or natural delivery 
 4.  Low birth weight
 4.  Loss of anticipation of a fully developed newborn
 5.  Problem at delivery
 5.  Loss of relaxed and joyful delivery
 6.  Child kept in intensive care nursery
 6.  Loss of chance to bond with child in natural environment
 7.  Seeing child as fragile and on life support systems in the intensive care nursery
 7.  Loss of anticipation of having a healthy newborn
 8.  Child identified as "at risk" for a special need
 8.  Loss of natural optimism and confidence in developmental milestone attainment
 9. Recognition that child seems "slow" in developing; others reassure you to wait, the child will catch up
 9.  Sense of being misunderstood, or not believed which impact level of self-confidence
 10. Child diagnosed as having a  special need
 10.  Loss of natural optimism of having a non-eventful childhood shared with parents and extended family.
 11.  Child involved in a variety of medical and rehabilitative services
 11.  Loss of privacy, loss of personal time, loss of anticipation of natural course of events for child and  loss of post birth plans for parents
 12.  Being informed that the special need has lifelong implications and consequences
 12.  Loss of anticipation for text book rearing of child into adulthood
 13.  Child's progress and reports from doctors and therapists reconfirms diagnosis of the special need
 13.  Loss of hope that initial diagnosis was a mistake; loss of ability to deny the reality of the diagnosis
 14.  Family, friends and associates reassure and/or avoid parents during this time
 14.  Loss of pre-birth and/or pre-diagnosis support system upon which parents once relied
 15.  Breakdown in couple's communication during this time
 15.  Loss of the sense of "team," "support," or "confidence" between partners
 16.  Parents get contradictory "news" regarding diagnosis and/or treatment of child 
 16.  Loss of confidence and/or trust in helpers, professionals
 17.  Ambiguity of the prognosis for the future; no clear answers of what exactly to expect
 17.  Loss of the anticipation for the natural course of events to take place 
 18.  Transfer of child from one program to another
 18.  Loss of security and comfort established in previous program
 19.  Comparison of you child to another child of the same age and recognizing the delays in development
 19.  Loss of anticipation that your child will be like other children in all things
 20.  Involvement in a public forum where child's condition is discussed openly
 20.  Loss of privacy, feeling that use of child's condition is a form of exploitation; embarrassment over openly exposing the emotional turmoil involved in your life
 Elementary School Years
 Loss involved:
 21.  Child enters public school at an early age
 21.  Loss of anticipation of "normal" early childhood development and "normal" schooling process     
 22.  Child involved in Exceptional Education Program with staffing, evaluators, IEP, and conferences
 22.  Loss of anticipation of "normal" parental involvement in the child's schooling    
 23.  Child responds emotionally to the separation from parent on entering school program or taking the "special bus"
 23.  Loss of anticipation of child being able to stay home with mother and siblings until kindergarten time.  It appears to be too "tough" on the child and makes the parents confused and guilt-ridden
 24.  School personnel reconfirm diagnosis and objectively assess the child's deficits and strengths
 24.  Loss of fantasy that child's special needs would improve or disappear by the time the child enters school
 25.  Child is included into "normal" classes
 25.  Fear of loss of supportive, caring, and understanding teachers and classmates and fear that child will experience discrimination and/or verbal harassment because of the special need
 26.  Child has health problems requiring hospitalization and/or surgery
 26.  Loss of belief that the medical problems involved with the special need will improve or disappear once the child reaches school age
 27.  Child continues to exhibit the effects of the special need; in fact, the effects become more evident, pronounced and more easily recognized by the untrained eye
 27.  Loss of fantasy that child would be able to go through life without the special need being so obvious to the outside world
 28.  Child's progress in school is slower than children of the same chronological age and the child may even experience failure in school
 28.  Loss of anticipation of child experiencing a "normal" path through school
 29.  Child takes a "special" bus and/or is placed in a "special" school or classroom
 29.  Loss of anticipation that neither the child nor the family would have to be exposed to the "special" world of the exceptional student
 30.  Child's progress continues to be slower than earlier predicted and/or expected
 30.  Loss of anticipation that the child would be able to overcome the special need and become "normal" or "fixed"
 31.  Child continues to require the physical care and support required of a baby or preschooler
 31.  Loss of anticipation that child would progress developmentally as child progressed chronologically
 32.  Child becomes heavier and taller and increased physical strength and exertion is required from caretakers
 32.  Loss of anticipation that the lifelong care of the child would not be so great of a burden on the parent and loss of anticipation that the child would become self-sufficient
 33.  Child remains in an ungraded classroom environment
 33.  Loss of normal benchmarks of progress, such as passing on to a different grade or class each year
 34.  Child's yearly developmental goals sound similar to the ones set the year before
 34.  Loss of anticipation that the child's IEP would reflect major developmental changes on a yearly basis
 35.  Teachers seem to react coldly to the emotional concerns and burdens the parents are carrying in raising the child with a special need
 35.  Loss of emotionally supportive environment parent had when the child was in infant and preschool programs
 Secondary School Level
 Loss involved:
 36.  Child does not transfer into a "normal" junior or senior high school program
 36.  Loss of anticipation of the "normal teenage years for the child
 37.  Child still requires physical care and support similar to that of a preschool or elementary-age child            
 37.  Loss of anticipation that child would progress developmentally as he progressed chronologically
 38.  Child does not consider or discuss career or college plans
 38.  Loss of anticipation of normal teenage banter about career and higher education
 39.  Child continues to fall behind in school and personnel talk about child remaining in school until age 21
 39.  Loss of anticipation of child growing in normal teen years with a "normal' high school graduation
 40.  School puts child into a transitional "prevocational" or vocational program
 40.  Loss of anticipation that child would be able to go to college
 41.  Child continues to struggle to learn basic academic work while in "high school" environment
 41.  Loss of anticipation that the child would "outgrow" the special need
 42.  Child is not capable of performing normal household chores or tasks
 42.  Loss of anticipation that child would eventually grow up, move out on his own, and become independent
 43.  Child requires parents to provide long-distance travel instead of being able to independently take a city bus or drive a car
 43.  Loss of anticipation of child growing up and eventually becoming independent of the need for the parents to take him everywhere
 44.  Child is not able to handle money or small  purchases independently
 44.  Loss of anticipation that child would be able to become financially independent
 45.  Child is not able to tell time or plan  daily activities without some guidance and supervision
 45.  Loss of anticipation that child would be able to become self-sufficient
 46.  Child begins to express personal emotional response to child's own disability
 46.  Loss of desire to have child fully accept his problems without having to go through the emotionally laden grief response the parents have already experienced
 47.  Child chooses to terminate therapy or to return to full-time use of the wheel chair
 47.  Loss of anticipation that child would want to be as "normal as possible," like the parents had been hoping for child
 48.  Child rejects parents' plans for the child concerning schooling, work, or living arrangements
 48.  Loss of anticipation that child would go along with the lifelong plans set for child by the parents
 49.  Child struggles for acceptance with "normal" peer group at school and in the community
 49.  Loss of desire to give the child an emotionally supportive environment, one in which he would not experience emotional trauma and rejection for having a special need
 50.  Child graduates from high school as an exceptional student with a "special" diploma
 50.  Loss of anticipation of a "normal" high school education and diploma for the child
 Loss involved:
 51.  Adult child remains at home full-time, unemployed after graduation
 51.  Loss of belief that "others" would take care of the lifelong needs of the child seeing to it that the child is gainfully employed
 52.  Adult child is placed in a sheltered workshop or supported employment 
 52.  Loss of anticipation that child would be able to get a regular full-time job
 53.  Adult child is dependent on parents for all activities of daily living after high school graduation
 53.  Loss of belief that "others" would continue to care for the child over child's lifetime, taking the burden off of the parents
 54.  Adult child is placed in a group home or supervised living environment
 54.  Loss of belief that the parents would be able to physically, emotionally, and financially care for the child at home for the rest of his life
 55.  Adult target child announces  intentions to marry
 55.  Loss of anticipation of  "normal" marriage for child
 56.  Married adult child with special needs announces intentions of having children
 56.  Loss of anticipation that parents would no longer have to "worry" about child once he became an adult.  Loss of anticipation of being "normal" grandparents
 At Any Age
 Loss involved:
 57.  Target child experiences the death of classmate or peer with special need similar to child's special need
 57.  Loss of anticipation that child can be spared the knowledge that child's special need puts child in a high-risk mortality category
 58.  Target child expresses sexual desires and begins to experiment sexually
 58.  Loss of anticipation that child with special need was "asexual" and would never ask about or have to deal with personal sexuality or sexual development
 59.  Target child experiences chronic or critical illness
 59.  Loss of anticipation that all the problems are behind the parents; that there would never again be anything as bad as the early years
 60.  Target child dies before the parents die
 60.  Loss of anticipation that the child would outlive the parents
Steps to handle the loss events resulting from having a child with a special need:
Step 1: In order to deal with grief you must admit to yourself what loss events you have experienced in having a child with a special need.  
Answer the following questions in your journal:
  • What feelings of loss did I experience during pregnancy (if I knew there was a problem)?
  • What feelings of loss did I experience during the delivery of my child with a special need?
  • What feelings of loss did I experience immediately following the birth of my child?

What feelings of loss did I experience: 
  • during the first three months
  • the first through sixth months
  • at six months to one year
  • at one to two years in the life of my child with the special need?

What losses did I experience: 
  • during preschool
  • elementary
  • secondary school, and 
  • during the adult years of my target child's life.

Step 2:
 Once you have identified the losses, identify how you handled the five stages of grief for each loss. (Refer to Tools for Handling Loss on 
Review the five stages of grief:

We deny that the loss event (diagnois of the special need) has occurred. We ignore the signs of the loss event.  We begin to use magical thinking, excessive fantasy, regression, withdrawal, and rejection.

We bargain or strike a deal with God, ourselves, or others to make the loss (diagnosis of the special need) go away. We promise to do anything it takes to make this loss go away. We agree to take whatever extreme measures are needed in order to make this loss disappear. We begin to shop around, gamble, take risks, sacrifice. We lack confidence in our efforts to deal with the loss and look elsewhere for answers.

We become angry with God, ourselves, or others over our loss (diagnosis of the special need). We become outraged and incensed over the steps that must be taken to overcome our loss. We pick out ''scape-goats'' upon whom to vent our anger, e.g., the doctors, hospitals, clerks, helping agencies, and rehabilitation specialists. We begin to use self-­blaming, switching blame, blaming the victim, aggressive anger, and resentment. Anger is a normal stage. It must be expressed and resolved. If it is suppressed and held in it will become ''ANGER-IN,'' leading to a maladaptive condition of depression that drains our emotional energy.

We become overwhelmed by the anguish, pain, and hurt of our loss (diagnosis of the special need). We can begin to have uncontrollable crying, sobbing, and weeping spells. We can begin to go into spells of deep silence, morose thinking, and deep melancholy. We begin to experience guilt, remorse, loss of hope, and loss of faith and trust. We need support to assist us in gaining the objectivity to re­frame and re-group our lives after this loss event. If we are not able to work through our despair, we risk experiencing events in our life such as mental illness, divorce/separation, suicide ideation or attempts, an inability to cope with the aftermath of our loss event, rejection of the family member who has experienced the ''loss'' event, detachment, poor bonding, and/or unhealthy interaction with the parties involved in our loss event.

We begin to reach a level of awareness and understanding of the nature of our ''loss'' event (diagnosis of the special need). We can now describe the terms and conditions involved in our loss, fully describe the risks and limitations involved in treating or rehabilitating the ''loss'' feelings involved, problem solve the issues involved in coping with our ''loss,'' test the concepts and alternatives available to us in dealing with this loss, and handle the information surrounding this loss event in a more appropriate way.

We begin to use rational thinking, adaptive behavior patterns, appropriate emotional responses, patience and self-confidence. We can be growing in acceptance and still be experiencing denial, bargaining, anger, and despair. We need support from others to gain objectivity and clarity of thinking in order to come to full acceptance. Those who have experienced similar losses form effective support groups.

After reviewing the five stages of grief, return to Step 1.  Identify the stages of grief you have experienced for each loss event, A through E.

Step 3:
  Now consider how your spouse or partner has handled these loss events. Answer these questions in your journal:
  1. How has my partner handled the loss events in the (1) pregnancy, (2) delivery, (3) birth of our target child and (4) diagnosis of our child as having a special need?
  2. How has my partner handled the loss events in the various stages of our target child's life? What stage of grief is my spouse in for each loss event?
  3. How have we helped each other cope with our losses?
  4. How have we communicated our feelings?
  5. How have these losses brought us closer together?
  6. How do we handle our differences in grieving?
  7. How well are we coping as a team with the loss events?
  8. What does our joint response to these losses tell us about our relationship?
  9. How willing are we to help one another cope?
  10. How important is our ability to cope in regard to our target child's welfare?

Step 4:
 Record any loss events for which you and your partner have yet to reach full acceptance.
 For these unresolved loss events, work through Tools for Handling Loss to gain acceptance of them. Know that this will take time and that you may need to work with a support group or a professional to accomplish this.

Step 5:  
If you have been unable to resolve your depression and grief, return to Step 1 and begin again.