ShareWIK.com

On the evening news recently, there was a feature story about a five-year-old boy with Down’s syndrome.  He is a clothing model for Nordstrom’s and other high-end fashion stores. In addition to being completely adorable, his parents commented on how completely “normal” he is. Children and adults with intellectual disabilities are indeed normal and share all the feelings, wishes, and desires as do people without disabilities. This includes grief and loss.

No two persons experience a disability the same way just as no two persons experience loss the same way. The personality of the person, their support systems and life experiences determine their grief reaction and how best to help meet their needs.

Persons with intellectual disabilities experience a number of losses that often go unrecognized. Most do not get a driver’s license, get married or have children. Some live with their parents into adulthood, and when their aging parents die they may need to move into a new home, which becomes yet another loss. In addition, many people with intellectual disabilities experience a history of disenfranchised grief. He doesn’t understand death, don’t worry about him.

Communication problems contribute to this misunderstanding.  There may be expressive and receptive language limitations. Feelings are often expressed through changes in behavior such as “acting out” or withdrawing.  Helping the person identify and express feelings may be challenging. Modeling feelings and/or utilizing art and music for self-expression can be beneficial. 

Attending the funeral and/or visitation (even if special arrangements need to be made to go early or late), participating in rituals if possible and visiting the cemetery aid the grieving process.  When death is impending, anticipation and preparation through looking at pictures or a field trip to the cemetery or funeral home can be highly effective.

For persons with intellectual disabilities, the grief journey may be different but the road is the same.  Support and understanding by normalizing and validating their feelings is just as important in assisting them to successfully move through their  journey as it is for everyone else. 

To read more about hospice, grief and this population, here is a link to a recent article Finding Their Voice: Helping the Person with Intellectual Disabilities Grieve that I co-authored with Rex Allen, MA, Grief Support Services Manager, Providence Hospice of Seattle in National Hospice and Palliative Care’s NewsLine Magazine (December 2011).

Diane Snyder Cowan is the mother of two grown daughters and a national leader in using music in grief therapy, as well as the director of Elisabeth Severance Prentiss Bereavement Center of Hospice of the Western Reserve in Cleveland, Ohio.   She is a regular ShareWIK.com columnist. To learn more about Diane, visit her blog.

Read other Diane Snyder Cowan columns here.

©2012  ShareWIK Media Group, LLC