Loss+Related+to+Having+a+Child+with+a+Developmental+Disability

=Chronic sorrow and loss in relationship to developmentally disabled children: Finding the Joy=

By: Sarah Hall

media type="youtube" key="0fNf8SCS1ow" width="425" height="350" Alana Finding the Joy


 * Alana is a You Tube video that showcases how one family found the joy. Sadness can be lessened when joy can be found.**



"Based on this literature review, chronic sorrow can be defined as a normal grief response associated with the ongoing living loss that is permanent, progressive, recurring, and cyclic in nature. Although parents grieving a living loss may experience symptoms of depression, such as guilt, sadness, or frustration, chronic sorrow is not clinical depression." **From "An Eviden****ced-Based Approach For Supporting Parents Experiencing Chronic Sorrow" by J. Gordon**

====Perryman (2005) describes the states of grief related to having a child with a developmental or physical disability. The research supports that the states are not linear (Kubler-Ross, 1997). Parents typically cycle between the stages depending on the current circumstances. It is also noted that two parents of the same child will not necessarily be in the same stage (Moses, 1987)====
 * The loss related to having a child with a developmental disability, a chronic health condition, or both needs to be addressed because parents often feel isolated, alone, and their grief is cyclic. Social workers should have a basic understanding of their loss so they can help the parents accept their loss and find the joy in what their children can do rather than constantly feeling their children are some how less than they should be. **

**Perryman's States of Grief:**
In this stage parents refuse to believe that there is a problem. They typically do not believe the diagnosis and can refuse to cooperate with treatment. Some parents go so far as to not allow the school to place the child in a special education class because doing so makes the diagnosis more real. According to Moses (1991) the function of denial is to allow the parents to "buy time". Having a child diagnosed with a developmental disability or chronic health condition is an overwhelming event. Denial gives tha parents time to process what is going on and can lead to a positive outcome. It is important to recognize when denial begins to cause problems. Such would be the case when parents refuse appropriate school placements, or refuse to give the child needed medication. In this stage parents begin to panic about what the diagnosis/disability means. They want to learn everything possible and tend to become experts in knowing what their child has and what it means for the family. According to Moses (1991) the function of anxiety is to motivate the parents into action. Anxiety helps to perpare the parents for the more challenging times ahead. The parents can sometimes become overly protective during this stage. In this stage the denial breaks down and parents often become angry, questioning why did this happen to their child. Some individuals actually experience the diagnosis as a "betrayal" by God. Anger helps to challenge the parents to find a new understanding of what is fair. "Anger helps to facilitate an internal diaglogue and propels the parents toward a new philosophy." (Perryman,2005,p.602) 4. **Guilt and Bargaining** Parents may blame each other or themselves for not taking better care of the pregnancy. Parents may feel guilt if they did not want the pregnancy from the start. Blaming oneself when one clearly did not cause the disability is described as "complicated guilt". According to Moses (1991) the function of complcated guilt is to allow the parents to believe that everything happens for a reason. Moses ( 1991) believes that this helps the parnets to being to form a new definition of normal and can move the parents toward developing an understanding of the meaning of the diagnosis during atime of chaos. Depression is seen as a normal response when a parent is faced with having a child that has a developmental disability. It is also described as the most "dangerous to the sustained relationship between parent and child" (Perryman. 2005, p.604). Depression is deemed "dangerous" because it can cause serious issues for the child. The parent and child may not bond. The parent could become so hopeless that he/she is no longer able to care for the child. Moses (1991) suggests that the function of depression is to raise questions about the individual's self worth. Depression can lead a parent to recognize that they are a strong, capable person, even though they are powerless to cure their own child. (Moses, 1991) Some researchers suggest that "acceptance" is not possible and perfer to use the term "acknowledgement". In this stage the parents understand their child's diagnosis and are knowledgeable about how to care for the child. While this is not a life they would have chosen, they accept it.
 * 1) ====**Denial**====
 * 2. Anxiety**
 * 3. Anger**
 * 5. Depression**
 * 6.Acknowledgement and / or Acceptance**

//**I offer "Finding the Joy" to this stage. I have found that parents who have a developmentally disabled child can and do "find the joy". I believe the message here is the ability to recognize that all individuals are unique and different. Finding the joy is about celebrating the unique accomplishments of the indivudals who are developmentally disabled, whether that is learning to hold a spoon, or ride a bike. While everyday can be a struggle, finding the joy helps "center" parents and allows them to carry on in the face of adversity.**//


 * Primary Loss:**
 * The primary loss is the loss of having a developmentally disabled child.**
 * Secondary Losses:**
 * The secondary losses related to having a developmentally disabled child include the loss of having a typical family, the loss of free time, the loss of friendships because people typically shy away from people who are different than them. The loss of a normal routine is also common. Relationships are often strained because of the daily stressors that affect the family.**

**Grief Related Stressers and Processes:**

 * **Grief Oriented Stressors:** || **Grief Oriented Processes:** ||
 * **1.Sadness over the loss of not having a “normal” child.**


 * 2.Anger over “why” this has happened to your child.**


 * 3.Guilt** || **1.Feelings of depression, crying, withdrawing from family and friends. Seeking out a therapist when needed.**


 * 2.Questioning “why” God allowed this to happen. Questioning your faith.**


 * 3.Questioning if you had anything to do with or cause the child’s problem. Wondering if you could have done anything differently to prevent the problem**. ||

**Life Oriented Stressors and Processes:**

 * **Life Oriented Stressors** || **Life Oriented Processes:** ||
 * **1.The challenge of trying to understand your child’s diagnosis and what it means: treatment options, prognosis, dealing with medical professionals.**


 * 2.Having to deal with insurance coverage and limitations while you are trying to obtain the best care for your child.**


 * 3.Dealing with not knowing what your child will or will not be able to do. Having to make plans for who will provide for your child when you die.**


 * 4.The challenge of having to try and maintain a "normal" family routine for the siblings of the developmentally disabled child.**
 * 5.Dealing with depression.** || **1.Internet searches to educate yourself about diagnosis, prognosis, finding the “best” doctors for your child.**


 * 2.Learning your medical insurance benefits, calling insurance companies to make sure medical services are covered.**


 * 3.Setting up legal documents that outline who can and will care for your child when you die.**


 * 4.Asking for help from other family and friends when you need it. Setting up carpools, organizing daily therapy appointment/doctor appointments.**
 * 5.Seeking out a knowledgeable therapists when needed.** ||

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References: Costantino, M. (2010). Parenting children with disabilities: Navigating through the storms. //Journal of Creativity in Mental Health//, //5//, 87-92. Cameron, S.J., Snowdon, A., & Orr, R.R. (1992). Emotions experienced by mothers of children with developmental disabilities. //Children's Health Care//, //21//(2), 96-102. George, A., & Vickers, M. H. (2006). Chronic grief: Experiences of working parents of children with chronic illness. //Contemporary Nurse//, //7//(23), 228-242. Teel, C. S. (1991). Chronic sorrow: Analysis of the concept. //Journal of Advanced Nursing//, //16//, 1311-1319. Kearney, P. M., & Griffin, T. Between joy and sorrow: Being a parent of a child with a developmental disability. Moses, K. (1991). The impact of childhood disability: The parent's struggle. //Cornelia de Lange Syndrome Foundation//. Perryman, H. P. (2002). Parental reaction to the disabled child: Implications for family courts. Fanily Court Review, 43(4), 596-606. Rogers, C. (2007). Disabling a family?: Emotional dilemmas experienced in becoming a parent of a child with learning disabilities. British Journal of Special Education, 34(3), 137-143. Wikler, L. (1981). Chronic stresses of families of mentally retarded children. //Family Relations//, //April//, 281-288.