| Handling Life-Long Grief and Feelings of Loss |
2. Handling Life-long Grief and Feelings of Loss
Tools for Parents of Children with Special Needs
By: James J. Messina, Ph.D.
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HANDLING LIFE-LONG GRIEF AND FEELINGS OF LOSS
Parents of children with disabilities 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 disabilities 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 disability.
Birth and Preschool Years
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Event:
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Loss involved:
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1. High-risk pregnancy
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1. Loss of the anticipation of a healthy, non-eventful pregnancy
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2. Premature birth
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2. Loss of anticipation of a full-term birth |
3. Cesarean section
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3. Loss of anticipation of vaginal and/or natural delivery
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4. Low birth weight
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4. Loss of anticipation of a fully developed newborn
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5. Problem at delivery
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5. Loss of relaxed and joyful delivery
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6. Child kept in intensive care nursery
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6. Loss of chance to bond with child in natural environment
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7. Seeing child as fragile and on life support systems in the intensive care nursery
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7. Loss of anticipation of having a healthy newborn
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8. Child identified as "at risk" for a disability
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8. Loss of natural optimism and confidence in developmental milestone attainment
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9. Recognition that child seems "slow" in developing; others reassure you to wait, the child will catch up
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9. Sense of being misunderstood, or not believed which impact level of self-confidence
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10. Child diagnosed as having a disability
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10. Loss of natural optimism of having a non-eventful childhood shared with parents and extended family.
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11. Child involved in a variety of medical and rehabilitative services
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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
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12. Being informed that the disability has lifelong implications and consequences
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12. Loss of anticipation for text book rearing of child into adulthood
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13. Child's progress and reports from doctors and therapists reconfirms diagnosis of the disability
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13. Loss of hope that initial diagnosis was a mistake; loss of ability to deny the reality of the diagnosis
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14. Family, friends and associates reassure and/or avoid parents during this time
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14. Loss of pre-birth and/or pre-diagnosis support system upon which parents once relied
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15. Breakdown in couple's communication during this time
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15. Loss of the sense of "team," "support," or "confidence@ between partners
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16. Parents get contradictory "news" regarding diagnosis and/or treatment of child
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16. Loss of confidence and/or trust in helpers, professionals
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17. Ambiguity of the prognosis for the future; no clear answers of what exactly to expect
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17. Loss of the anticipation for the natural course of events to take place
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18. Transfer of child from one program to another
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18. Loss of security and comfort established in previous program
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19. Comparison of my child to another child of the same age and recognizing the delays in development
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19. Loss of anticipation that my child will be like other children in all things
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20. Involvement in a public forum where child's condition is discussed openly
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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
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Elementary School Years
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Event:
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Loss involved:
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21. Child enters public school at an early age
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21. Loss of anticipation of "normal" early childhood development and "normal" schooling process
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22. Child involved in Exceptional Education Program with staffing, evaluators, IEP, and conferences
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22. Loss of anticipation of "normal" parental involvement in the child's schooling
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23. Child responds emotionally to the separation from parent on entering school program or taking the "special bus"
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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
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24. School personnel reconfirm diagnosis and objectively assess the child's deficits and strengths
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24. Loss of fantasy that child's disability would improve or disappear by the time the child enters school
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25. Child is included into "normal" classes
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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 disability
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26. Child has health problems requiring hospitalization and/or surgery
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26. Loss of belief that the medical problems involved with the disability will improve or disappear once the child reaches school age
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27. Child continues to exhibit the effects of the disability; in fact, the effects become more evident, pronounced and more easily recognized by the untrained eye
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27. Loss of fantasy that child would be able to go through life without the disability being so obvious to the outside world
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28. Child's progress in school is slower than children of the same chronological age and the child may even experience failure in school
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28. Loss of anticipation of child experiencing a "normal" path through school
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29. Child takes a "special" bus and/or is placed in a "special" school or classroom
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29. Loss of anticipation that neither the child nor the family would have to be exposed to the "special" world of the exceptional student
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30. Child's progress continues to be slower than earlier predicted and/or expected
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30. Loss of anticipation that the child would be able to overcome the disability and become "normal" or "fixed"
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31. Child continues to require the physical care and support required of a baby or preschooler
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31. Loss of anticipation that child would progress developmentally as child progressed chronologically
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32. Child becomes heavier and taller and increased physical strength and exertion is required from caretakers
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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
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33. Child remains in an ungraded classroom environment
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33. Loss of normal benchmarks of progress, such as passing on to a different grade or class each year
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34. Child's yearly developmental goals sound similar to the ones set the year before
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34. Loss of anticipation that the child's IEP would reflect major developmental changes on a yearly basis
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35. Teachers seem to react coldly to the emotional concerns and burdens the parents are carrying in raising the disabled child
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35. Loss of emotionally supportive environment parent had when the child was in infant and preschool programs
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Secondary School Level
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Event:
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Loss involved:
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36. Child does not transfer into a "normal" junior or senior high school program
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36. Loss of anticipation of the "normal teenage years for the child
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37. Child still requires physical care and support similar to that of a preschool or elementary-age child
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37. Loss of anticipation that child would progress developmentally as he progressed chronologically
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38. Child does not consider or discuss career or college plans
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38. Loss of anticipation of normal teenage banter about career and higher education
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39. Child continues to fall behind in school and personnel talk about child remaining in school until age 21
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39. Loss of anticipation of child growing in normal teen years with a "normal' high school graduation
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40. School puts child into a transitional "prevocational" or vocational program
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40. Loss of anticipation that child would be able to go to college
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41. Child continues to struggle to learn basic academic work while in "high school" environment
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41. Loss of anticipation that the child would "outgrow" the disability
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42. Child is not capable of performing normal household chores or tasks
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42. Loss of anticipation that child would eventually grow up, move out on his own, and become independent
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43. Child requires parents to provide long-distance travel instead of being able to take a city bus or drive a car
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43. Loss of anticipation of child growing up and eventually becoming independent of the need for the parents to take him everywhere
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44. Child is not able to handle money or small purchases independently
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44. Loss of anticipation that child would be able to become financially independent
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45. Child is not able to tell time or plan daily activities without some guidance and supervision
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45. Loss of anticipation that child would be able to become self-sufficient
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46. Child begins to express personal emotional response to child=s own disability
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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
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47. Child chooses to terminate therapy or to return to full-time use of the wheel chair
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47. Loss of anticipation that child would want to be as "normal as possible," like the parents had been hoping for child
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48. Child rejects parents' plans for the child concerning schooling, work, or living arrangements
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48. Loss of anticipation that child would go along with the lifelong plans set for child by the parents
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49. Child struggles for acceptance with "normal" peer group at school and in the community
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49. Loss of desire to give the child an emotionally supportive environment, one in which he would not experience emotional trauma and rejection for being "disabled"
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50. Child graduates from high school as an exceptional student with a "special" diploma
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50. Loss of anticipation of a "normal" high school education and diploma for the child
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Adulthood
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Event:
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Loss involved:
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51. Adult child remains at home full-time, unemployment after graduation
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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
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52. Adult child is placed in a sheltered workshop or supported employment
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52. Loss of anticipation that child would be able to get a regular full-time job
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53. Adult child is dependent on parents for all activities of daily living after high school graduation
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53. Loss of belief that "others" would continue to care for the child over child=s lifetime, taking the burden off of the parents
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54. Adult child is placed in a group home or supervised living environment
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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
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55. Adult target child announces intentions to marry
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55. Loss of anticipation of "normal" marriage for child
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56. Married adult disabled person announces intentions of having children
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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
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At Any Age
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Event:
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Loss involved:
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57. Target child experiences the death of classmate or peer with disability similar to child=s disability
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57. Loss of anticipation that child can be spared the knowledge that child=s disability puts child in a high-risk mortality category
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58. Target child expresses sexual desires and begins to experiment sexually
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58. Loss of anticipation that disabled child was "asexual" and would never ask about or have to deal with personal sexuality or sexual development
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59. Target child experiences chronic or critical illness
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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
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60. Target child dies before the parents die
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60. Loss of anticipation that the child would outlive the parents
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Steps to handle the loss events resulting from having a child with a disability:
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 disability. Answer the following questions in your journal:
B. What feelings of loss did I experience during pregnancy (if I knew there was a problem)?
C. What feelings of loss did I experience during the delivery of my child with a disability?
D. What feelings of loss did I experience immediately following the birth of my child?
E. What feelings of loss did I experience:
(1) during the first three months
(2) the first through sixth months
(3) at six months to one year
(4) at one to two years in the life of my child with the disability?
F. What losses did I experience:
(1) during preschool
(2) elementary
(3) secondary school, and
(4) 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, by James J. Messina, Ph.D., 1992, Kendall-Hunt Publishing, Dubuque, Iowa ) Review the five stages of grief:
Denial:
We deny that the loss event has occurred. We ignore the signs of the loss event. We begin to use magical thinking, excessive fantasy, regression, withdrawal, and rejection.
Bargaining:
We bargain or strike a deal with God, ourselves, or others to make the loss 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.
Anger:
We become angry with God, ourselves, or others over our loss. 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.
Despair:
We become overwhelmed by the anguish, pain, and hurt of our loss. 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.
Acceptance:
We begin to reach a level of awareness and understanding of the nature of our ''loss'' event. 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:
B. How has my partner handled the loss events in the (1) pregnancy, (2) delivery, and (3) birth of our target child?
C. 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?
D. How have we helped each other cope with our losses?
E. How have we communicated our feelings?
F. How have these losses brought us closer together?
G. How do we handle our differences in grieving?
H. How well are we coping as a team with the loss events?
I. What does our joint response to these losses tell us about our relationship?
J. How willing are we to help one another cope?
K. 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.
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