Lecture Series Notes

Families: Friend or Foe

Presented by Sarah Trester and Cheryl Etherton

Sarah and Cheryl shared with the participants how life experiences affect parents and families.  When you meet a parent/family remember the following:

Parents/Families in many cases are just tired of fighting to get services;

Parents/Families often carry a history of rejection, disappointment and isolation with them;

Parents/Families may find it hard to trust new workers;

Parents/Families have made many adjustments to their son and/or daughter’s special needs;

Parents/Families can have well-defined, usually very practical, priorities;

Parents/Families child’s future as well as their own is a major concern;

Parents/Families self-sacrifice has been significant and largely unappreciated;

Parents/Families are typically deeply committed to their child.

In addition, parents and families lives have been changed forever when they are told that their child has a disability. Receiving such a message can produce overwhelming emotions of shock, disbelief, anxiety, fear and despair. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent (and family) must experience the process of grieving. (Author anonymous)

Elizabeth Kubler-Ross, M.D. was a psychiatrist and the author of the groundbreaking On Death and Dying which identified the 5 overlapping stages of grief and do not always have a specific order. The stages are denial, anger, bargaining, depression and acceptance. Parent/Families may find themselves dealing with the stages of grief throughout developmental life milestones that typically each person experiences.

The stages of the grieving process as noted above are described as:

Stage one: Many families experience shock and denial that their family member has a disability. Sometimes these family members express feelings of sadness, confusion and helplessness. Denial can protect the family from the initial shock but can be a detriment if it is not addressed.

Stage two: During this stage, family members often look for miracle cures. They often attempt to change reality or bargain for a different one. This stage is an extension of the previous stage. Many parents are still denying or truing to avoid their child’s disability.

Stage three: As parents realize that their child will not improve significantly parents may develop anger.  Anger may be directed toward someone or something. There may be anger at God, or at oneself, or one’s spouse for having produced the child. This anger could also be projected onto professionals for not healing the child (doctors) or for not helping their child make significant learning gains (teachers). Through experiencing anger, families may reconnect with a new sense of fairness and justice.

Stage four: At this stage, the family may experience depression or feelings of shame, guilt, hopelessness, and anxiety as they realize the overwhelming burden of responsibility they have to face. Depression should be seen as a normal and necessary feeling of the grieving process.

Stage five: When parents begin to understand and appreciate their child as s/he is, it might be said that parents have reached a sense of acceptance.

What Families Really Want

From Daily Living Programs

For Their Family Members with Mental Retardation

1.       Safety and health

2.       Cleanliness

3.       Personal respect and acceptance

4.       Maintenance of skills

5.       A pleasant daily experience

6.       A realistic amount of growth and development

7.       A dependable routine

When families and human service workers work together as a team, these things are achievable and rewarding for all involved. 

Ways that life experiences may have effected parents/families

 of adults with mental retardation:

1.    They are tired of fighting to get services.

2.    They have a history of rejection, disappointment and isolation.

3.    It is hard to trust new workers.

4.    They have made many adjustments to special needs.

5.    They have well-defined, usually very practical, priorities.

6.    The future is a major concern.

7.     Their self-sacrifice has been significant and largely unappreciated. 

8.    They are deeply committed to their child.