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Margie Ryerson, MFT, is an author and a marriage and family therapist in Orinda and Walnut Creek. Contact her at (925) 376-9323 or margierye@yahoo.com.
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If you are a family with a child with special needs, most likely you experience intense physical and emotional demands. You need as much help and understanding from family, friends, community and school services as possible. In addition, your other children will often need special attention as well. Here are some considerations for helping them:
1) Explain to your other children exactly what the child with special needs is experiencing (and will experience), so there are no misconceptions or unnecessary worries. Keep updating them, since conditions and treatment will vary over time.
One 11-year-old sibling I saw developed a school phobia because she worried that her sister with leukemia would die when she was at school. She needed frequent reassurance and information about her sister's condition, and a promise that if there was an emergency, her parents would pick her up from school.
2) Have open communication with your children so they can comfortably discuss their concerns, worries and frustrations with you. Check in with them regularly, even if they seem annoyed that you are doing this. Let them know that you welcome discussion of any worries and feelings.
3) Protect your children as much as possible from your own worries and anxieties. Your children need reassurance that you are handling what is necessary, and that you are confident and competent, even if you have to fake it sometimes for their sakes. Unfortunately, some parents "let it all hang out" with their children, and necessary boundaries become eroded. If siblings are too involved, they can develop symptoms such as obsessive-compulsive disorder, an eating disorder, self-harm, excessive anxiety, depression, underachievement in school, substance abuse - the list goes on and on. Your other children need to be free to feel less responsible and less emotionally involved than you are. They need to be able to live their own lives.
4) Explain how siblings can help out, but don't create too much of a burden for them, which can lead to resentment. Have your child with special needs pitch in to help as much as possible
5) While you want to have appropriate expectations for your child with special needs, don't set your expectations too high for your other children.
Annie, age 19, grew up with an older sister with severe learning disabilities. She thought her sister, Alison, got off easy while she felt pressure from her parents to perform well in sports and academics. Annie developed an eating disorder, bulimia, as a way of coping with her resentment and accompanying guilt for feeling the way she did. Whenever she tried to express her frustrations to her parents, they would tell her to just be happy that she didn't have Alison's problems.
6) If you see your other children setting goals that are much too high for themselves - or developing perfectionistic tendencies, perhaps to compensate for a sibling's inability to perform - be sure to intervene and try to provide some guidance.
7) Try not to automatically get involved in your children's disputes. First see if they can work things out themselves; otherwise you may tend to try to protect and defend your special needs child too much at the expense of your other children.
8) Encourage each child to have his own interests, friends and activities, and not to pursue something solely because he wants to please you.
Trevor had a physically disabled brother. He signed up to play football in high school even though he didn't like it very much. Trevor's father and grandfather had both played in college, and his father expressed hope that his son would continue the family tradition. Trevor knew his father was already disappointed that only one of his sons would be able to follow in his footsteps. He felt duty-bound to fulfill his father's hopes and to compensate for his brother's disability.
9) Make time to spend individually with each child and to participate in their activities. Give each child enough personal parental attention so that they won't try to obtain your attention in negative ways. As one wise parent noted, "When I spend individual time with my children, I can more easily be a different kind of parent to each of them, depending on their personalities and needs."
10) Take advantage of school, community and other resources for your children that offer emotional support. An excellent resource is Donald Meyer's Sibling Support Project (www.siblingssupport.org). The organization offers books, training, workshops, online support, and sibling support groups.
Keep in mind that if they are well-supported emotionally, your children with a special needs sibling can develop special strengths. Many of these children demonstrate empathy and compassion starting at a young age. In addition, they are often very loyal and accepting of others because of their experiences with their sibling.
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