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Siblings of disabled face challenges
Filed under: Activities: Babies, Siblings, Health & Safety: Babies
Interesting piece in the New York Times about siblings of disabled children and the unique challenges
they face. The siblings of the disabled, are often embarrassed by their disabled sibling and then ashamed of those feelings. They may feel their parents have enough on their hands, so they try to be 'easy' children so as not to add extra burden to their parent's lives. Some children say they feel jealous of the attention their disabled sibling gets and so wish they were the disabled ones.
The article points out these complex emotions about disabilities are difficult even for adults to process, it's much more difficult for a child to do so. Also most support organizations deal directly with the disabled child and his/her parents, with siblings being lost in the shuffle.
The Arc's sibling support program, run by director Don Meyer, looks to open up honest discussion for these children. He's also published a book, The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs, with candid remarks from 80 children.
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ReaderComments (Page 1 of 1)
4-04-2006 @ 10:49AM
Cathy said...My 12-y-o daughter attends SibShops. They are a child's version of a support group and are run by adult siblings of special-needs people. She loves going to them and has learned that she is not alone in her feelings.
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4-04-2006 @ 10:59AM
Angelica said...I've never had very personal experience with disability. But in grade school I was a part of a group called 'Circle of Friends'. We essentially 'adopted' a student (with a handicap) and had weekly meetings just to talk, we would hang out at recess and have parties once every few months. We would also help with any 'difficulties' that other students would have with that particular classmate (the disabled classmate). Sometimes we would just explain the disability...sometimes we would help them get to know the person. Through it, I found that a lot of classmates were jealous (not of the disability) of the attention that the disabled student would receive. Even though I was only in about fourth or fifth grade at the time, I fully appreciate having that experience.
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4-04-2006 @ 11:11AM
ann adams said...Perhaps it's because Elcie is the oldest but so far so good with the sisters. They squabble but it's more about Elcie being a normal bratty (at times) 13 year old than anything to do with her disability.
I've had to remind them a few times of the things they can do that Elcie can't but for the most part they are both good. They take her to the store and for walks with them and they're willing to slow down so she can keep up when she's on her crutches. I have to caution them about doing things for her she could do for herself. We want her as independent as possible.
I imagine though with a child more "involved" than Elcie, the situation would be quite different.
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4-04-2006 @ 12:17PM
suburban misfit said...I've often thought about how my daughter feels, being the sister of such a quirky kid. My Christopher doesn't have "typical" special needs, but he has a sensory disorder and he has ADHD. He's always been way more than a handful, usually taking up most of my parenting time and skills. I often feel grateful that Sophie is so "easy", but I do wonder how much of her temperment has been shaped by sheer necessity.
There is a support group for siblings of special needs kids at their school. Perhaps I'll talk to the coordinator and find out if Sophie would be welcome (I don't know if the group is just for siblings of kids with more profound special needs).
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4-04-2006 @ 2:56PM
Anonymous said...Wow. That article really hit home. Thanks for posting it. My brother was born blind and I absolutely understand a lot of these issues. The article only began to touch some of the guilt I felt growing up and not being disabled. I wish there were support groups for us back then. It could have save me a TON of money in therapy.
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4-04-2006 @ 3:00PM
nancy said...Thanks for writing about this, Melissa, I'll have to read it. I'm currently pregnant with my second baby, and, because of my "advanced maternal age", realize the risk for potential chromosomal defects is somewhat higher. While I'm thinking positive and trying not to jump to any conclusions about the outcome of this pregnancy (I'm not having an amnio), I'm also reading more about having a disabled child such as Down Syndrome, etc., just in case. Doing some research has actually lessened my fears, and I am amazed at the strength (and support systems) of so many families out there!
My daughter is 2.5 years old, and to have a resource and information on how raising such a child could potentially affect her as well is invaluable... again, just in case.
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4-04-2006 @ 3:37PM
Susan said...We are struggling with this at our house right now. Our oldest son, who is almost six, has an autistic spectrum disorder; he has started speech therapy and is being evaluated by yet another neurologist, which involves a lot of taking him out of school for appointments and leaving my younger son with various friends and babysitters. Because we don't want our older son to feel bad about himself or his difference, we have been pitching his doctors appointments as special "play" times, which we thought was a very smart approach.
Until this morning, when my completely neurotypical three-year-old asked when it would be HIS turn to go "play" with the speech therapist.
It is hard, particularly with kids as young as mine, to make everyone understand what exactly is going on, and to make them both feel like we love them--if not equally than as much or in the way that they each need. I want them to remain close as they grow up; I don't want my older son to feel like he was a burden to us nor do I want my younger son to feel like he was shortchanged by his brother's needs. Mostly, though, right now, I just don't want to constantly feel like I'm failing someone.
This balancing act literally breaks my heart on a daily basis. Thank you, Melissa, for the heads up about this article.
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4-04-2006 @ 8:32PM
Michelle said...A big problem in our house is the guilt factor. Our son was born at 25 weeks, causing us to pull our 20 mos old daughter out of school and "abandon" her everday to visit the baby in NICU. I was having a hard time, because I felt like no matter where I was, I was "abandoning" one child to be with the other. OK. I got over that. Now, we are dealing with the developmental delays that can come along with being a micro-preemie. This includes multiple in-home therapists and specialists. Again, our daughter is having to sometimes take a back-seat. She responds to this by interrupting therapy sessions and acting out. She is contantly clamoring for my attention. I feel like I need to have 2-3 of me. She is intelligent and constantly needs stimulation and her brother needs hours of work each day. Daddy works ALL the time so I can stay home. It NEVER ENDS!
It is a daily struggle to try to make sure everyone gets what they need and I'm not always sure I'm successful! At least the rewards of hugs, kisses, grins and giggles are in plentiful supply, or else, I think I might have to jump off the roof! (J/K?!?)
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4-05-2006 @ 12:44AM
Missy said...I had a profound hearing loss as a child and had to be shuttled back and forth between audiologists and speech therapists (as a very young child). As the youngest, I think my middle sister already had issues with me but this really took the cake.
I really wish she'd had such a resource back then. Now we get along just fine but I'm sure it sucked back then having a "special" sibling.
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