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Special Needs Siblings Have Special Needs, Too!

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Updated on Dec 16, 2008
“Help! I will have a house full of relatives this Christmas. I know exactly what will happen and I don’t know what to do about it. Everyone will shower lots of attention on my daughter with special needs and basically ignore her younger sister. It makes me so mad! Any ideas?” – Mom of a child with developmental disorder
 
“My five-year-old son had to go to the hospital and I stayed with him. His older sister was so angry at me for leaving her that she wouldn’t even look at me when she came to visit the hospital. What can I do to get her over her anger?” – Mom of a child with cystic fibrosis
 
Special needs kids face plenty of special challenges and so do their siblings. According to Don Meyer of SibShops, much of the medical world is focused on the affected child and siblings are often forgotten. Don points out that brothers and sisters are too important to ignore because they will be in the life of the special needs child long after parents and other caregivers are gone.
 
So how can parents nurture the sibling relationship, take care of the affected child and manage to squeak in a little time for parental self-care? It’s not easy, but understanding a little bit about relationship dynamics and having a good parenting toolbox can go a long ways.
 
When healthy children live with a special needs sibling, whether that child has psychological, neurological or medical problems, they naturally have an understandable potpourri of feelings that swirl within depending on the situation, the family culture and their mood at the moment. Such feelings may be love, resentment, protectionism, feelings of helpfulness and hopelessness interspersed at times with “just wishing my sister would die!”
 
Surprisingly, although children “lean” toward one feeling or another, parents consciously or unconsciously validate certain feelings and those are the feelings that become most habitual or primary.  In our book “Parenting Children with Health Issues,” we note that there are various ways parents, without realizing they do so, validate dysfunctional or unhappy feelings in the healthy sibling. We can look at one example here:
 
Understandably, parents may vibrate feelings of guilt about the time and energy they must spend on their special childThis encourages blame in the healthy sibling. So a mother might respond to an upset sibling with: “Paul, honey, I’m sorry, but Nate needs a lot of my time right now.” Especially if this is said with a tone of slight plead, the response of most healthy siblings will be, “Well, it’s not fair! You should be spending more time with me!”  How different this is than when the parent says, with love and understanding, “I understand that you’re frustrated. And I appreciate your understanding about the time Nate is taking right now. Not every kid could handle it so well. Thanks.”
 
When confronted with a child’s upset feelings, there are two common mistakes parents make: They validate the child’s upset by responding with too much sympathy or defensiveness or they invalidate the child’s feelings by dismissing their concerns. The solution? As shown in the example above, respond with empathy and acceptance of the child’s feelings while not giving approval of “acting out” behaviors and giving the child the “you-can-cope message.”
 
One of the best gifts a parent can give any child is the ability to cope well with the challenges life throws their way. As adults, we know that life will always have problems and frustrations but it is how we handle them that will ultimately determine the quality of our lives. 
 
When children have the experience of coping well with problems, they are confident and they take responsibility for their lives. It is too easy for siblings of disabled kids to take the victim position: “If it weren’t for John’s illness, my life would be easier” or “If it weren’t for Susie’s disability, I’d be happy,” etc.
 
There are a number of ways that parents can help the healthy siblings of a special needs child to cope:
  1. Parents need to spend some individual time with the healthy child. Parents may need to play tag-team to do this. Even a quick dinner at McDonald’s can be a time of important one-on-one connection.
  2. Expect (with great appreciation) that the healthy child will help with some of the necessary routines concerning their brother and sister and other jobs around the house. Chores are an important way for all kids to contribute to the family and human beings love what they contribute to. But be sure to pay a child for special duties above and beyond what is usually expected and keep expectations reasonable.
  3. When and if the child expresses negative or angry feelings listen with acceptance, not necessarily approval. Everyone needs time to vent and wants his or her feelings to be accepted but that doesn’t mean parents have to agree with the content of the complaint. Words that show acceptance without necessarily agreeing with the feelings are: 
“Thanks for letting me know how you feel”

“I appreciate your telling me these things.”

“I can understand that you feel that way….”

  1. After listening, questions may help children move toward resolution:
       “How long do you think you’ll be upset about….?”
       “What is your plan for handling…..?”
  1. Special needs children may require more than average physical contact from their parents and siblings are sure to notice. Make sure you give the healthy child equal touch, hugs, and eye-contact.
  2. Be sure siblings are getting accurate information about the disability or disease. Where there is a lack of information, kids often fill in the gaps with misinformation or they might blame themselves for causing the problem.
  3. It is helpful to educate extended family members, schools contacts and close others about the siblings’ special challenges and needs. But be sure to talk this over with the sibling first- especially an older child. Make a plan together ahead of time about the best way to handle those family members who are coming for the holidays! This will reduce stress and hard feelings.
  4. Make the effort to find out what your children need as individuals; there many good books on personality styles. By becoming aware of your child’s personality style, you will be more able to respond effectively to the behavioral or emotional challenges that come up.  You might think that the sibling who is spending time all alone in his room with his books is depressed- and that might be the case. Or it might be that your child is an analytical introvert who simply prefers books to people!  Take the time to understand who your children really are.
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