As published in Preemie Parent Connection, November 1996, Vol. 1, Issue 5
NOTE: Although this article was written to address the issues faced by children who have a sibling with a disability, much of the information also applies to children who have a premature brother or sister in the hospital or being followed on a precautionary basis.
Families whose composition is made up of children both with disabilities and without are faced with additional issues and concerns. The relationships formed between siblings are often the longest relationships of our lives. As parents we want to be sure that the relationships between our children are not hindered by the differences that exist between our children individually as well as the differences that exist between our family and other families in our community.
Children who have a sibling with a disability have a great need for information. They wonder about the cause of the disability including why the sibling has it, what made him "get it", what the future will hold, if future siblings will have it too, and whose at fault? Children also wonder if their sibling with the disability is in pain because of the handicap and if their sibling has the same feelings and thoughts as they do. Other concerns about the sibling may include wondering if there is a cure for the condition, if it will improve, and if he/she will outgrow it. Questions may arise about treatments available and their outcomes.
The need for siblings to have information goes even deeper as the child gets older. Older siblings are usually unclear about what their parents expect of them in their relationship with their brother or sister. They begin to wonder about their parent's feelings and problems regarding their parent's time begin to arise. Issues also develop about how and what to tell their friends about their brother or sister and his or her disabilities. The issue of being ashamed and teased almost always needs to be faced.
Community reactions and responses become the center for communication, too. Your child may wonder what happens in the special education classes. All families with a disabled person have to deal with people staring -- or the thought that people are staring. Concern may also arise about people taking advantage of your child's sibling and he may begin to wonder if his brother or sister will have his or her own friends.
Children also have to deal with their many emotions. They may be confused and ashamed to talk about their complex feelings. They may feel that they are "bad" because they sometimes feel as if they hate their brother or sister and yet, feel extreme love for them after only a short time has passed. They may feel ignored and unimportant because their sibling gets so much more attention even though they understand why he needs the extra attention.
Each of these concerns need to be addressed as they arise, however, silent questions rarely get answers. And without answers, many children create their own explanations which are seldom correct. Children need encouragement to ask their many questions. They may not openly ask questions to protect their parents from the pain or because they fear their parents may break down emotionally. Another fear that often prevents children from asking questions about their special sibling is the fear that their parents will reject them because of the questioning.
Here are some tips to help your children attain the information they need regarding their sibling with a disability:
Actively Listen. When your child approaches you with a question, immediately stop what you are doing and give your full attention to your child. Allow plenty of time and respect for the question.
Be Honest and Sincere. Answer your child's questions with complete honesty and sincerity. If you don't know the answer to the question, say so. Suggest that you seek the answer together and plan to visit your local library together or take your child with you to your next appointment with the professional that can provide the answer to your child's question.
Keep It Simple. When answering your child's question, keep in mind the age of the person you are talking to. Don't provide too much information but be sure not to be too simplistic either. After giving your answer ask, "Do you undersand?" and "Do you want to know more?" This gives your child the opportunity to either end the conversation or pursue it.
Provide Balanced Information. Be sure you do not just relay the negative or just the positive side of the situation. This goes along with being honest in your answers, be sure to show a clear picture.
Follow Up. A few days after the conversation, bring up the discussion again and ask if any new questions have arisen. Giving your child a few days to 'digest' the information may give him time to think of more questions.
By Sandra M. Peters as published in Preemie Parent Connection, September 1997
Jimbo held the back door open exuberanting patience more like an adult than the 4 1/2 year old he was. As I helped Emily (2 1/2) walk in her Gait Trainer tothe door, Jimbo watched his little sister struggle with each step. "Mom," he started, "I wish Emily could walk like I do."
Simply, I answered, "I do too, Honey." But not quite so simple were the emotions that rushed through my chest and head. I felt the double edged daggerpenetrate the center of my heart and then quickly twist. Instantly, I grabbed the knife and pulled it back out! For just as having a child with a disability has completely enriched me as ahuman being, it, too, has already made her big brother a more compassionate, understanding, patient, tolerant, and loving person.
I truly feel as though I was "chosen" to be the mother of a child with a disability. Not only has God given me the gift of two wonderful little people to raise, but He has also given me the gift of insight. But, I wasn't given the gift of insight ofliving in a world where there are people with disabilities until I was nearly 30 years old. Jimbo, on the other hand, has received this gift at the age of two, when his sister was born 10 weeks early. Just as I have learned the enumerable lessons of ABILITY, for example, my son will grow up with these lessons as a given.
Although I do worry about the many different effects Emily's cerebrals palsy and all the special appointments, equipment, and necessary time, will affect Jimbo, what really comes shining through is all that my little man knows at his young age. Jimbo's vocabulary not only includes words like "shingles", "ridge cap" and "rubber roofing" because Daddy is a roofer, but he also regularly uses words like "physical therapy", "Gait Trainer", and "protection response". One day my Mom's friend commented on how well Emily was doing at sitting on the floor and holding herself up. Jimbo turned to the friend and matter-of-factly informed our friend, "She's using her protection responses."
When we all got out to the patio, Jimbo took it upon himself to get behind Emily and put his foot on the back lower bar of the Gait Trainer and began doing my job. "Take a step, Emily" his sweet little voice instructed. Emily grinned and obeyed. "Good girl. Now take another step." Jimbo's words flowed with love and hope as he moved the Gait Trainer with his foot just enough to accomodate Emily's little step. I watched in awe and observed no errors in his practices. I wondered "If he is doing this at four, what will he be like as an adult?" If I must say so, I do believe that my goal to raise my son to be a good husband and father will be fulfilled -- but mostly on behalf of his sister.
Should I have taken time to discuss Jimbo's expression of emotion "I wish Emily could walk like I do"? To me, the definition of family is those whose lives are so intimately entwined that heartaches and joys are shared on a daily basis regardless of how trivial or life altering. Jimbo simply expressed what each of us feels --we each wish Emily could walk like we do --but that doesn't mean we can magically make it happen and it doesn't mean that we can ever change the fact that we each DO wish that she could. What it does mean is that each of us have been individually blessed by God to be a part of each others lives on the most intimate and important level. We are approaching the turn of the millineum and yet felle the bond taken for granted by families in days gone by. "I do too, Honey" was all I needed to say.
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