Children With Disabilities: Understanding Sibling Issues

"Where is Marianne?" by Patty McGill Smith

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National Information Center
for Children and Youth with Disabilities

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I have a daughter named Marianne. She is 14 years old and so pretty. Marianne may giggle constantly, and then sometimes grow very somber. She is a fantastic young lady of whom I am so proud. She plays soccer and basketball; she can cook and clean; and she has sensitivities far beyond her age. Several trophies line the shelf in her room, and she recently won a scholarship for high school.

Yes, Marianne can do all kinds of things, and she is in and out of love every other week. While so much she does is so normal, there are some other things about Marianne and her life that are unusual.

Marianne was three years old when her sister, Jane, was born. The next two years in Marianne's life are a blur in my memory. Yet, I can recall vividly what happened to Jane during that time. You see, Jane was born with a disability. We did not confirm her disability until she was 14 months old. Those first 14 months were filled with apprehension, concern and crying, and the fussing and fretting of a demanding little baby. The next 12 to 14 months, the months after the diagnosis, were filled with more concerns, confusion, distress, dismay, and heartbreak.

I wonder where Marianne was during those two and a half years. What was she thinking during that time and what was happening to her?

If you don't have a child with a disability in your family, you can't imagine the impact this event has upon the entire family. So much of family life -- the emotion, time, and concern -- is focused on the child with the disability. After that, parents are consumed with coping and survival. There is so much to think about: medical treatment, another opinion, insurance, money, weariness, and wondering why it happened to you. There just is never a convenient time to consider the Mariannes of the world.

It was difficult or impossible at the time to see the situations in which the siblings were being slighted. The slights were not intentional and there was no lack of love. When Marianne and her older sister, Patricia, were four and five years old, respectively, I enrolled them in dance class. This was one of the first realizations I had as a parent that they were not getting as much time, energy, and effort as their little sister with a disability. After that, I can recall making a conscious effort to change things. I remember how important it became that their costumes for the dance recitals were all that they should be. I remember sitting the children down and saying, "Jane takes more of Mommy's time and energy. It isn't that I love her more; it is just that she needs more. You see, she needs more car rides for her doctor visits and evaluations, and more time for her programs. So it ends up that she gets more of my time." Do you suppose that Marianne, her sister, and her brothers who were older were able to accept those kinds of ideas? I don't know.

I do know that at some point in those early years things did change. Gradually, all the children became involved in assisting with Jane's programming. It was great fun to see members of the family join in to help. When Jane began to respond to their teachings, the children taught all the harder. I remember when my oldest son, Mark, taught Jane to "give me five." I remember telling teachers that our household had become a household of speech therapists. "Watch my lips" must have been uttered a hundred times a day; everybody was trying to get Jane to continue to develop her speech patterns. All these things were done in a light and joyful way that made them lots of fun. I, however, look back and wonder if it was too much for them? "How was Marianne being affected?"

I think about other things, too. I remain amazed by the enormous difficulty of motivating normal children to do their best when so much time and effort goes into the development of the child with the disability. What a disappointment when the grades of the siblings come home and they are not all A's. You know they could all be A's, and yet, how do you motivate the normal children to work to their full capacity? I didn't know then, and I don't know today. Then there was the overemphasis on the accomplishments of the child with the disability. Were the accomplishments of the normal siblings similarly heralded? I don't think so. Yet, my Marianne and all the rest seemed to be happy children.

What about the resentment when Jane was learning tasks? It never seemed as though she kept up. Jane, as well as the rest of the children, had assigned tasks around the house and yard. Yet, wasn't it easier to get the older kids to do a job than it was to have Jane do it? I think so. What about the time I gave to teaching the older children skills? Was equal time given? I don't think so. I remember the summer we taught Jane to clean her bedroom. It had been Marianne's job to teach Jane the finer points of room cleaning, but Marianne didn't want to do it. Do the normal siblings become resentful? Does this resentment create other troubles? I think so. Will Jane ever catch up and be able to fully meet the family's requirements of its members? I don't think so.

Is having a child with a disability going to adversely affect the development of the children who have no disabilities? Each family needs to consider this possibility and work to avoid inadvertently hurting the ones we love.

Have I personally ever gotten an answer to this question? Indirectly, yes, for despite all the uncertainties, my children have grown and matured into adults of whom I am proud. However, Gene, my oldest son, gave me what was perhaps the most direct answer I am sure I ever got to an unasked question. When he left home for college, he wrote me a letter. In this "lonesome" letter, in which he expressed his longing for family and friends, he spoke of all his brothers and sisters. Of Jane he said, "... and Jane, well Jane is probably the greatest blessing to us in the world."

Did he mean that he was glad that she was born with a disability? Quite the contrary. He was saying that Jane and her needs had brought us together as a family. It was true; Jane had been a focal point around which we all rallied. We worked as individuals and as a family to help her. Jane had become a total family effort.

Over the years, as a family, and as individuals we have had many successes and some setbacks. Yet, we know none of us has to be alone. We know how to pull together as a family, to love, support, and share -- something we learned how to do a long time ago with Jane.

A Final Word

It is important for parents, siblings, and professionals to utilize the positive resources discussed here in order to cope with a variety of special circumstances, and to adapt them to meet individual needs as they change. Together, family members, as well as professionals, must strive to accent the "abilities" of disabilities, not only for a brother or sister with a disability, but for the entire family.