Grieving special needs children and adults

June 14, 2:17 AMFamily Grief & Bereavement ExaminerCarol A. Ranney

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C Ranney

When there is a death in the family or in the peer group of a special needs child or adult, that person is very often forgotten in the planning of the service, the mourning rituals, funeral home visitation, and the other common aspects of grieving and mourning the death of someone loved.  Just as children are sometimes left out of these important experiences because “they’re too young,” they won’t/don’t understand,” or “it would be too upsetting,” special needs children and adults are also frequently forgotten mourners.

Contrary to what the general public may think, people of all ages who have exceptional needs still have their emotions intact, are generally aware of the people around them, and are also aware of the absence of these important people.  Even though the child or adult may not be verbal, be assured that they have their thoughts, their memories, their questions, and their sorrow.  If they are able to love, they are able to grieve, and if they are able to grieve, they need to mourn and to heal.

My youngest son, who is non-mobile and non-verbal with cerebral palsy, was nine when my middle son died at age 13.  Following that, he shared a room with my oldest son, who also had cerebral palsy.  When that son died in 2007, my youngest son at first only looked around the room, but with the passing of several days and being told that his brother was not coming back, he became more and more depressed.  For several months after that, he would have periods of inconsolable sobbing.  One day I had an 8x10 picture of his older brother and asked him, “Want to see your brother?”  From the huge smile on his face I realized that he had misunderstood.  I showed him the picture and he looked and looked at it, but his smile faded.

Only recently I showed him a picture of my middle son, who died now 13 years ago.  He stared at it for the longest time before a slow smile spread across his face.  After I hung it on the wall behind his wheelchair, he struggled to turn his head to see it until I turned his chair so he could continue to look.  Now both pictures are at eye level at the head of his bed where he can see them often.

When my oldest son died at age 31, one of the most touching parts of the memorial service was when a school friend from his special needs class of ten years before stood up and in tears, told of how much my son's friendship had meant to him.  Young people in special education often don't have the opportunities to make friends that other students have, so the friendships they have formed mean a lot.  It is important to acknowledge the loss when one of their peers dies, and to allow them to take part in the service and other rituals as much as they are able.

As a parent or long-term caregiver, you probably already have a very good sense of what your young or adult child understands, and the information that will be meaningful to them.  The basis of supporting anyone is to give them security, empathy, the information they need in a way they can understand it, and permission to grieve by talking, crying, or feeling sad.  You can empathize aloud with the non-verbal child or adult and put into words the emotions they are probably feeling.  Pictures of the loved one may help them remember and mourn; try to find those which are clear and close, to be sure they are recognizable.

Music is a universal language.  The music of bereavement will soothe, calm and comfort, no matter what the developmental level.  Some good CDs are two of harp music by Tami Briggs, Reflections on Grieving and Touched by Angels, and a CD of folk music for those grieving, Seasons by Dillon Woods.  Getting Through It is another peaceful and soothing vocal CD.  At Water's Edge is a DVD of nature scenes, accompanied by soothing music that will calm any troubled heart.

When you are close to a person with special needs, you “learn their language,” whether verbal or nonverbal.  You will know when you have connected, comforted, and helped to bring about healing and peace of mind to your loved one, and your reward will be to see the enhanced quality of life your child enjoys through being understood and being helped to mourn and heal.

Additional Resources:
Helping People with Developmental Disabilities Mourn

Lessons in Grief & Death: Supporting People With Developmental Disabilities in the Healing Process

Helping Adults with Mental Retardation Grieve a Death Loss