Grieving When You Have a Child With Special Needs

How to handle this perfectly natural response to your new normal

by Christiane Manzella, PhD

Parents of children with special needs often have complicated feelings, thoughts, and responses about caring for their child, including love, anger, sadness, disappointment, and guilt. These are all part of the grieving process, which is a normal response to any significant change (not just a death).

When you learn that your child has special needs, you can experience profound shifts in your hopes, dreams, and expectations. You may also face tremendous challenges navigating your child’s care from diagnosis and intervention to advocacy and long-term planning.

The early stage of this process is grief from changed expectations. For example, you may be coming to terms with the loss of your child’s health, your child’s loss of functioning related to a specific condition, or the loss of the relationship you expected to have with your child.

Even though grief is addressed in self-help books for parents of children with special needs, sometimes parents don’t believe it’s acceptable to have these feelings and thoughts. Many feel intense shame and guilt about these complex emotions and find it hard to discuss them with family and friends without feeling like a “bad parent.” There can be subtle (and not-so-subtle) pressure from family and friends to make the best of the situation and “move on,” so parents often keep negative emotions hidden.

But having conflicted feelings is a normal part of adapting to having a child with special needs. And not addressing these feelings can distance you from loved ones and make you feel isolated and alone. In the world of grief counseling, this is called disenfranchised grief. That term describes grief and emotional responses to change and loss that aren’t considered legitimate or acceptable by society, or even by the person experiencing them.

When you and those around you don’t acknowledge your emotions, you may end up feeling isolated and overwhelmed, which can lead to rumination (feeling stuck in worrisome thoughts), anxiety, and loneliness. Rumination, in turn, is a known risk factor for depression. So although parents of children with special needs do not automatically become depressed, rumination has the potential to diminish your ability to cope and take action. Eventually, it can diminish your quality of life.

There’s no right or wrong way to grieve. But it can be helpful to know that it’s a process of evolving that enables you to make ongoing, progressive adjustments to life as it is now and ultimately create a new normal.

Here are a few ways to begin the healing process:

Know that your feelings, whatever they are, are normal. Parents are often relieved to know that feeling deeply disappointed, frustrated, and sad is part of the normal grieving process. It’s important to let yourself feel complex emotions as they come up.

Know that you are not alone. Connecting with other parents of children who have special needs will help you learn that you don’t have to hide your disappointment or go through challenges on your own. Hearing about others’ experiences will help lessen the stigma you may feel about your own complicated emotions.

Surround yourself with support. Keeping grief hidden can harm your overall quality of life and day-to-day coping skills. Find a safe person or place (such as a support group) to discuss your feelings openly.

Expect ups and downs. This is a process that will have many twists and turns. At times you may have a resurgence of grief, especially when other challenges arise. (For example, you may grieve when you become aware of a missed developmental milestone.) But knowing you’re not alone and understanding that your feelings of disappointment, shame, or guilt are perfectly normal can help you work through your grief and develop new coping skills that will improve your life and the life of your child.

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Christiane Manzella, PhD

Christiane Manzella, PhD, has been a therapist and grief counselor in New York City for more than 20 years. Dr. Manzella earned both her master's degree in clinical psychology and doctorate in counseling psychology from New York University and carried out her doctoral dissertation research at Beth Israel Medical Center hospice, with postdoctoral supervision in grief and bereavement work. She was named a Fellow in Thanatology: Death, Dying and Bereavement, awarded from the Association of Death Educators and Counselors (ADEC), and is completing the third year of a three-year term on their Board. 

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