Roanoke Conference, 2009
This workshop was presented by Chaplain Buster Stockman, father of Lindsay, a nine year old with trisomy 18, and of her older siblings Drew and Jordan. He and his wife Lynne have been active members of SOFT. He is the hospital chaplain at both a hospital and a convalescent center in Virginia. He received his Masters of Divinity in Pastoral Care and Counseling from the Southern Baptist Theological Seminary in Louisville, Kentucky, and received training in maternal/fetal grief counseling and in pastoral care.
This workshop was given to benefit parents, grandparents and friends of special needs children or anyone who has experienced the loss of a loved one. Grief issues regarding children with trisomy disorders have particular challenges related to the unique circumstances throughout the child’s life, slowed development, and early death. Support systems can be unhelpful or even harmful, because the people reaching out lack the expertise and experience necessary. With children with trisomy there are unique issues that require specific strategies to facilitate coping. Parents, by understanding what will work for them, can teach friends and family members to provide the positive support that will help them cope more effectively.
Chaplain Stockman explained that grief in its simplest terms is the emotional response to the sense of loss to which one has a personal and/or emotional attachment. Grief is a normal response to loss and typically the experience is common to others in the social environment. Supportive people are skilled to give support and are readily available. The loss is a one-time event. In contrast, complicated grief refers to less common loss, and fewer people are skilled or otherwise capable of providing helpful support. Complicated grief includes loss related to children who are unable to meet developmental milestones, have frequent medical emergencies and present a tenuous survival and uncertainty to their parents and siblings. Complicated grief is grief that extends into the future with new grief experiences occurring along the way. Having a child with disabilities, as well as having a child who died means facing losses in everyday experiences and at milestones, which serve as reminders of what the child will not accomplish. Grief can be invoked when seeing a healthy child, a homecoming, same age children, developmental milestones and rites of passage such as graduation, marriage, moving out of the house, and grandchildren, all reminders of what is not possible.
With complicated grief there are common emotions such as sadness, anger, shame, guilt, blame, confusion, panic, relief, freedom and joy, with no particular emotion wrong or abnormal. Different situations elicit different and even contradictory emotions. Complicated grief is a response to many different situations, so the needs of those trying to cope vary from time to time. Despite the fluctuating emotions, there are approaches people in the social environment can take to facilitate coping.
There are spiritual needs which should be met to help in the grieving process. There are different communities to which an individual belongs, and there are specific relationships within social structures. Social groups relate to work, religion, kinship, ethnicity, hobbies and interests, and common experiences. It is important within groups that there be acceptance of emotional expression without censure. People should not feel shame for having and expressing their emotions related to grief. It is essential that there be a welcoming and acceptance as an equal with “all that you are.” Being in a group in which the person is only tolerated or even avoided means more negative experiences and no opportunities for healing. It is important that the person experiencing complicated grief learn to look forward to events and experiences with others in the future without a sense of being overwhelmed by what awaits him. Positive interactions give indications that future encounters will also be helpful. Faith involves a perspective of believing that actions lead to positive outcomes. In contrast is a sense of failed faith that is marked by what did not happen despite what was done. It is important that grieving not preclude intimacy. It is in sharing one’s true self to others and not hiding from others a part of what is important that healing will happen. It is necessary that the person who is experiencing complicated grief feel valued by others and not feel that others’ perception is that he or she is a liability, a person who takes but does not give back.
The person struggling with complicated grief also has some responsibilities in interactions with others. It is important that the person knows the rules of the community, knows what to expect and has the resources to meet expectations and does not go into social situations without a sense of what is expected. There should be spiritual resources available. A personal assessment should be made to determine what needs are not being met and what can be done to make changes that will result in solutions. The best solution is to develop relationships with others who have experienced similar events and had similar emotions and are willing to share experiences and reactions. The SOFT conference allows opportunities for making connections with people who understand because of shared experiences. Conversations and support with changing circumstances can continue after the conference. It is often hard to build the relationships at home that will be helpful with complicated grief. A very good solution is one can work with and teach friends and family members to provide support through listening without giving advice, using clichés or making judgments about what should or should not be done, believed or felt. The person seeking support can direct interactions and give feedback on what is helpful and what feels detrimental. Active listening is essential if the person experiencing complicated grief is to share emotions that may not be experienced by friends and family members and the listener is to gain a new perspective. It is also essential that the counsel and support offered be heard and actively considered. There needs to be opportunity for reflection, response and questions in active listening. Making an appointment to talk can be helpful, but the others should have an easy way to decline without embarrassment. Those who give help should be rewarded for their help.
Finally, a good solution is to seek professional help. Talk therapy can be helpful. Therapists are trained to listen objectively and can offer insights that are useful in moving forward and feeling more hopeful and in control. Professional help has its limitations. Emotional support is not provided, and support comes after a request, and is not assertively offered. It is not spontaneous help in the context of friendship.
Participants were encouraged to make connections at the SOFT conference by filling out an information card and meeting with others with a similar situation. In speaking with each other and sharing their personal stories participants should find common threads. Each should commit to being assertive in supporting the others or not participate. Participants should agree if and when to stop. He also added that new families should not attempt to give support for older families.
Reviewed by Clarice Papillion and Pam Healey