Coping with a Sibling’s Disability

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Volume 6 · Number 3 · June/July 1996 | Download PDF

by Linda Lee Ratto, M.Ed

Often the siblings in a family with a disabled child take second fiddle. This is not intentional but sometimes necessary, especially if the child with the disability needs acute care. However, it is most important to focus loving attention and set aside time for every family member — even during trauma.

My book, Coping with a Physically Challenged Brother or Sister*, details practical ways to help children cope with disability. The number one step is communication.

No matter what your child’s age, talking about a sibling’s disability is paramount. Understanding eliminates fear. Including siblings in the daily routines and treatment is a perfectly natural, practical beginning. Communication is fostered during shared experiences.

Our first child was born without a left hand. My husband and I decided to have more children to provide Courtney a ‘homemade’ support system — siblings who know and love her for all that she is. This presented a unique opportunity for me, an educator. I was entrusted with the most important role I could be assigned — that of teaching acceptance through understanding and love. Our two boys, Eric and Ryan, 1-1/2 and three years younger than their older sister, know more about prostheses and doctors because they’ve come along with Courtney. This personal connectedness has created a family team. We can discuss anything with knowledge and comfort.

Life-skills my sons have learned by joining their sister during medical visits:

  1. Any question may be asked, however small or large it seems.
  2. If a medical professional does not have an answer, we may expect to receive one in a reasonable time-frame or we will choose another to help us.
  3. Understanding treatments and procedures prevents fear.
  4. They feel included, part of a family unit that can face anything together.

The other number one step for best coping with a sibling’s disability is parent-understanding of the grief process.

Understanding Grief

Why have I listed two first steps? Why have I mentioned these in what may seem reverse order? Doesn’t understanding of the Grief Process come first?

Ideally, coping in a healthy way would be a process we all know well before we face a trauma or tragedy. Unfortunately, we are rarely taught how to deal well with life’s bumps. Often, we learn how to cope during a trauma or after it has subsided.

The healthy coping process is one based on the human condition of grief. Dr. Elisabeth Kubler-Ross was the first to enumerate the common steps people go through during a loss. Her work is based on the death of a loved one.**But her process can be plugged into all forms of dramatic change in one’s life. The six stages of grief as explained by Dr. Kubler-Ross are:

  • Shock
  • Depression
  • Anger
  • Acceptance
  • Denial
  • Hope

People who already have healthy coping techniques may go through these stages quickly. Others may linger in one or more stage. This is potentially unhealthy. Becoming stuck means one is not moving forward. Being stuck in a grief stage can damage the child. It is good to know what to expect when grieving, in order to learn how to deal with these common stages of emotion, and thus teach a child how to cope.

After understanding the six steps of grief, what next?

A good place to begin sharing coping skills is by allowing children to express the same emotions. Denying, avoiding or ignoring that a child feels angry, for example, is to stuff that anger back down inside the child. This causes unhealthy patterns to develop, such as staying angry for years.

Communication within the family about the disability experience is a major sign of respect for the child’s feelings. Helping a child identify and discuss feelings gives the entire family something to share.

Together is the operative word. Children flourish when they do not feel alone. In the midst of the early stages of a disability, sibling isolation is common. At times, the sibling of a child with a disability may want it too.

Imagine that.

But it’s true.

Why long for a disability? Attention. Loneliness. Wanting what is perceived as special privileges denied the nondisabled child. Missing school or having a treat after a doctor’s visit is a common pet peeve for siblings. The child who doesn’t have to miss school and go to the doctor still wants to, disability or not!

Easy Answers

Solutions? There are numerous uncomplicated and practical ways to help the child cope:

A. Bring the sibling and skip half a day of school. The education out of the classroom is worth the time. Take along an extra adult if necessary, to get the most out of your visit.

B. Talk to your children’s teachers. Plan to be a guest teacher. Let your children go to school together, share the disability, then have a snack. A reason to celebrate is born: a learning party!

C. Chat, chat, chat: but don’t pound your children’s heads with facts, numbers and conditions too complicated to grasp. Use the teachable moments that abound even in the busiest household:

During car-pool, bring up an issue the doctor has discussed.

While setting the table or cooking, ask what the child thinks of the disability the family is experiencing.

If and when anger arises, try talking it out, going back to the real issue bothering the child. The basis is often not the actual incident in which the anger surfaced.

Story-time, prayer-time, or a good-night moment are excellent times to get out feelings so everyone goes to sleep feeling relieved and loved.

I could go on with tips learned with my three children. But if we were meeting for the first time and had only five minutes, I’d share the above. Then I’d share a hug. That’s the other first step to living well with disability — loving care. Be healthy!

* Books written by Linda Lee Ratto, M.Ed.:

COPING WITH BEING PHYSICALLY CHALLENGED , ISBN# 0-8239-1344-9; written from the point-of-view of the person who is disabled.

COPING WITH A PHYSICALLY CHALLENGED BROTHER OR SISTER , ISBN# 0-8239-1492-5; from the sibling’s point-of-view.

These coping skills books are written on a grade 5 reading level and contain children’s and young adult’s stories on 90 disabilities and how to live well, day-by-day. As family references, these books are helpful in explaining medically-complex terminology and dealing with high emotions. (To order the two hardcover books, call: The Rosen Publishing Group, NY: 800-237-9932, $16 each including postage/handling.)

** On Death and Dying by Elisabeth Kubler-Ross; published in paperback; although this book discusses death, the grief process deals with most of life’s challenging situations, including those of health-related trauma such as amputation, and disease, and coping with dramatic change.

About the Author

Linda Lee Ratto, M.Ed. is a parent, educator and author. Two of her books are referenced in the accompanying article.