Death of a Special Needs Child
When a child has special-needs that require constant caretaking, the supportive family finds itself defined by the unconditional love it gives and receives. When the child dies, the family suffers not only the loss of the child, but the loss of an intense and focused way of life. Suffering from this compounded grief, parents need support to find ways to redirect the constant love, energy, and attention given their child for what may have been a short time or many years.
The Unique Grief of Parents When a Special-Needs Child Dies
The grief that follows the death of a special-needs child comes not only from the emotional bond shared, but also from the influence the child had on the lives of the parents and family. By necessity, the families of special-needs children lead lives that are—to a greater or lesser degree—different from those of society’s mainstream. Since the relationship with the child is unique, it follows that the grief process will also be unique.
Parents often feel grief when they first learn their child is disabled—feelings born in the ashes of hopes and dreams of what will never be. Depending on the depth of a parent’s expectations, this grief can be devastating.
Parents often feel resentment and anger during the child’s life. Being stripped of dreams for the child’s future may lead to feelings of resentment. Anger can result from the constant caretaking and worry that go hand in hand with having a special-needs child. The daily struggle to make a child’s life as fulfilling as possible often takes its toll.
The onslaught of guilt is normal. During the lifetime of a special-needs child, it is common for parents to feel guilt over not having enough time to develop a satisfying and deep relationship with the child’s siblings or time to spend nurturing the spousal relationship. By necessity, a disabled child’s needs take precedence over just about any other aspect of family life. Other forms of guilt may arise when questioning the source of the condition that disabled the child. Many parents worry that they are somehow responsible or were the source themselves. It is important to remember that guilt is an emotion—it doesn’t have to make sense or be logical.
After a child dies, parents may agonize over the fact they didn’t see the death coming—or that they did anticipate the death but didn’t do enough to save the child. Most parents of a special-needs child are aware that the child may suffer an early death and do all they can to prevent or delay it. But when death does occur, parents often second-guess themselves with questions like “Why didn’t I sense that my child’s death was so near? If I had, maybe I could have done something more!”
When the child dies, parents sometimes feel a sense of release and even relief. This, too, can bring feelings of tremendous guilt. I loved my child they may think. How can I feel relief that he or she is dead? Stepping back and looking closely at these feelings, parents may realize that psychologically it is normal to feel a sense of relief that the child is no longer in pain, and that the huge responsibility to protect the child from harm has ended. Guilt can sometimes be lessened by remembering how much of the parents’ lives were devoted to assuring that the child experienced the best life possible.
During their child’s lifetime, parents often feel isolated. Most parents of special-needs children find the average parent cannot understand the depths of despair, joy, love, and sadness that are an integral part of living with a disabled child. These feelings of isolation, of not being understood, often continue after the child’s death. Though the parents’ sorrow may be overwhelming, friends, acquaintances, and even some family members might express thoughts such as, “I know you must feel happy your child is in a ‘better place’ and isn’t in pain any longer,” or “I know how much you loved him, but your life was never your own. Now you can go out at night or even take a vacation without feeling guilty.” Although certainly well-meaning, remarks such as these which cause pain come from an ignorance of the family’s special love for this child.
Grief and pain may not be validated by those who cannot understand that sharing life with a special-needs child has huge rewards that accompany the work and worry. Discussing the rewards experienced as a result of sharing life with a disabled child may be met with blank, uncomprehending stares. Only others who have experienced a similar lifestyle may be able to understand.
Parents of special-needs children tend to develop a strong sense of protectiveness and responsibility, and in return receive unconditional love. It is normal for all parents to assume the difficult and sometimes overwhelming responsibility of protecting and watching over the safety of their children. For a non-special-needs child, this responsibility is most concentrated in the child’s younger years. The intense desire felt by parents to keep their special-needs child safe, however, does not diminish as the child ages. It goes on and on. It is, in part, this endless need to nurture that forges the tensile bonds of love and caring, creating a family with a central focus that is, by necessity, the special-needs child. It is the death of the child and the abrupt loss of this focus that compound the grieving process.
Addressing Support Needs for Families
The pain of a family grieving the loss of a special-needs child may be best shared with and validated by someone who understands the unique lifestyle the family has led, someone who can connect with a statement such as, “I feel pain every time I look at the empty place where we always stored his wheelchair.” The Compassionate Friends welcomes as members any family experiencing the death of a child, and those suffering the loss of a special-needs child are warmly included. For those who have access to and are comfortable with the Internet, there are online support groups for families whose special-needs child has died. Intense love, pain, and grief can be shared with others hundreds or thousands of miles away.
Where Do Special-Needs Families Go from Here?
Families that have experienced years of intense personal and loving one-on-one support for a special-needs child suddenly find themselves with an emptiness in their hearts. Yet the need to give unconditional love continues. Where do they go to put these nurturing skills to work? What do they do now?
If one is physically and emotionally able, spending time as a volunteer caregiver with those who are sick or lonely is one way of reaching out with love to others in need. Grieving parents often discover that when they help someone else, they receive benefits in equal measure.
Schools and facilities for the handicapped offer opportunities for volunteers whose “loving” skills are extraordinarily developed.
Unfortunately, there are many special-needs children who do not have families. Great courage is required to consider giving a home to another special-needs child after suffering the death of one so beloved, but this is an option that can be carefully weighed, knowing that the giving of unconditional love allows the return of unconditional love.
The current printing of this brochures was sponsored by
the Mesa-Tempe, AZ Chapter of The Compassionate Friends
in loving memory of all our children
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