Stages of Grief and a Child with Special Needs

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Recent life circumstances has me examining grief and and its relationship to loss. Grief is a normal feeling that we all experience in reaction to loss and can be a deep and intense feeling of sorrow. But I wanted, or perhaps needed to understand the various stages of grief. Although my current circumstance is not connected to my child with special needs, I certainly went through much of this many years ago when my daughter was only two. I hope that this information can be useful to other parents who are just beginning their special needs journey.

In 1969, Elisabeth Kubler-Ross is the doctor who initially presented a model of grief that contained five stages. At that time the loss was death, but loss can be felt in many different ways. Parents who discover that their child has a special need experience a loss–a loss of what could have been but will never be. The grief from this loss will go through the same stages as the grief from any other kind of loss.

Kubler-Ross’ five stages and how they can apply to parents of children with special needs are:

1. Denial - When you discover that your child has a special need your first reaction can be denial. We all have known parents who get stuck in this stage and never want to admit that their child has a problem. Unfortunately for these children, their issues are either never addressed or addressed too late.
2. Anger – When you get past the  denial, you can become angry. The anger may be directed at your child, at a spouse, or to the world in general. Rationally, you know your anger is misplaced, but emotionally you don’t know what to do with it.
3. Bargaining – Through the process of handling grief, you may begin to bargain with God or a higher power. You may try to make a deal–if I do this, then my child will get better.
4. Depression – As reality sets in and you realize that your child has a special need that is permanent and lifelong, depression may set in. You begin to realize that your child will not be cured and special needs will forever be a part of your and your child’s life.
5. Acceptance – Not all parents can get to this stage. Acceptance is acknowledging who your child is and recognizing her skills and gifts.

You do not have to experience these stages in order, nor do you have to experience all of them. You can move among the stages and spend different lengths of time in each. You can also be in more than one stage at any particular time. The stages are more of a guide to what parents may experience when learning that their child has a special need.

Melody Beattie, a self-help author, agrees with Kubler-Ross’ five stages of grief, but adds two more: obsession and guilt.  Obsession refers to the need to tell your story over and over again. It can be very important and part of the healing process to have other people hear your story. It is crucial that others do not try to fix you or the problem, but rather, just listen and let you heal.

It is typical for parents to feel guilt when they have a child diagnosed with a special need. Guilt refers to blaming yourself and trying to determine what you did wrong.  Rationally you may know that you didn’t do anything wrong, but emotionally you still blame yourself.

Coping with feelings that come with having a child diagnosed with a special need is a personal experience for each parent. Family and friends can be supportive through the grieving process, but it is an individual journey. It’s important that parents allow themselves to go through this process and feel what they feel. The hope is that by working through the process and coming to acceptance, parents will obtain great joy in seeing their child with all her special and unique gifts.