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  • Grief Over A Child's Disability

  • Grief Over A Child's Disability

    Managing Grief

    Families who have children with disabilities often experience different levels of grieving throughout the life of their child with a disability. Sometimes the feelings of grief can be overwhelming, but many parents comment that over time they have learned that grieving is a process that should not be perceived as bad or unusual. It is something that happens and needs to be dealt with over the course of time.

    The Grieving Process

    The grieving process felt when a family has a child with a disability is often compared to the grieving process for handling the death of a close friend or relative. Grief after death is divided into five stages:






    Although these are similar emotions that parents who have children with disabilities experience, the difference is that the parents don't necessarily feel these emotions in that particular order and often re-visit the cycle of emotions at many different times. Other emotions that may be felt are shock, guilt, mourning, and confusion. But because there is no funeral or other ritual, a sense of closer is not experienced. This makes acceptance harder to achieve. Acceptance becomes a process in itself; a process that involves learning how to compromise and cope.

    Another loss that family members feel is a loss of their self-identity. Parents often feel like they are known more as "Jimmy's Mom" or "the parent of Jimmy" rather than Mr. or Mrs. Jones. The same holds true for siblings. They, too, might be referred to as "Jimmy's sister or brother." Also, parents find that their lives are consumed with trying to help their child achieve their fullest potential while keeping the household running as usual, so there is a loss of many of the old freedoms once experienced.

    Grief After the Initial Diagnosis

    News of a child's diagnosis can be received in many ways. Parents may find out about a disability through a pre-natal test, at the time of the child's birth, when the child is a few years old and has not been making milestones, or as the result of an accident or illness. No matter what the diagnosis is or when it is given, all parents will initially go into a process of grieving. But in addition to coming to terms with the diagnosis, the parents are also wading their way through medical opinions and finding services and supports for their child. Sometimes this rush of activity into this new environment causes the family to unconsciously "put off" grieving until later. Once the dust settles and services are in place, the family wonders why they suddenly feel worse than before. What has happened is they finally have time to really sit back and look at their new situation. It suddenly sinks in.

    Grief During Times of Transition

    Once the family has adjusted to their child's diagnosis and a "new normal" has been achieved for family life, it might feel like the grieving is over. But senses of grief tend to return when the child enters various times of change or transition, such as:

    --transition to school-age services

    --surgeries or serious illnesses

    --inclusion into regular classrooms

    --becomes difficult to care for

    --becomes an adult

    --When the daily schedule is disrupted due to changes of the child's needs, the family is once again thrown into the grief cycle.

    Watching other children grow and develop can also cause parents to re-grieve. As their other sons or daughters accomplish academic achievements or make the school band or sports team, parents often think of the "what ifs" of their child with special needs. A trip to the park can spark grieving emotions when watching other children play. Some parents also feel times of grieving during holidays and on their child's birthday.

    The Child's Perception of Grief

    Yet another issue is how to help a child with a developmental disability understand and handle grief situations. There is no easy answer or a set of instructions on how to do this. Many factors need to be considered when planning on how to help the child handle grief, such as their cognitive abilities, their age, and their understanding of life and death. An important point to remember is that the greater the child's disability, the less likely that people will recognize the child's grief. In addition, because a child with severe disabilities may not react immediately to a loss situation, actions that may be misinterpreted as "acting out" at a later time might actually be a part of the grieving process. Many experts comment that grief responses, especially anger, can be displayed up to one year after the event.

    Examples of grief situations for children with disabilities may include the death of a friend or relative, when parents divorce, changes in home care providers (ex. nurses), or staffing changes of their teachers, therapists, and doctors. In all of these situations, people should provide honest answers for the child, listen to the child's questions, minimize change, try to have the child involved in decision making as much as possible, and seek bereavement counseling for any concerns.

    For parents of adopted children with disabilities, there are additional issues to consider, such as the child's possible issues of abandonment, separation, and loss of their natural parents. As the child gets older, these issues may become more and more apparent.

    Where to Find Help and Resources

    Dealing with grief is different for each family and each person within the family. Some people choose to deal with it personally while others prefer to seek counseling or support groups. Remember that many people, in addition to the parents, will experience grief: siblings, grandparents, other relatives, and friends.

    If you feel that the grieving won't go away, it might be helpful to seek professional counseling. When seeking a counselor, be sure that they are licensed and that their experience is in working with families who have children with disabilities. Remember that counseling is a process where the client and the counselor work together to get to a resolution. It is not a quick fix. Professionals who can help include psychologists, licensed professional counselors or certified counselors, and licensed clinical social workers.

    This information came from an
    Ohio Family Support Collaborative online article.

    *** Any law, statute, regulation or other precedent is subject to change at any time ***

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