Living with Siblings With Disabilities in Special Needs Families

Family And Disability – Special Needs Families

“Don’t Forget about Me!”

I have often mentioned the social-emotional journey toward the acceptance of a learning disability (LD) and shared information and resources that were intended to help adults work though the complex emotions that go hand in hand with having a child who struggles with learning. The feedback I received (thank you to all who wrote to share your first-hand experiences and to offer ideas for future discussion) reminded me how important it is to also recognize the experience of other family members, particularly siblings, whose lives are affected, often in dramatic ways, by living with an individual with LD.

Seeing the Forest Through the Trees

Raising children is a wonderful journey that has rewards and challenges every step along the way. Parenting children with special needs (whether they have health issues, problems with learning and behavior, and even exceptional abilities) is especially labor intensive. The attention and energy expended to meet these special needs and keep a healthy balance between home and school can be all-consuming and at times exhausting. As a consequence of this day-in and day-out juggling act, the feelings and needs of non-disabled siblings might be unintentionally overlooked.

Video: A Family of Brothers

Four brothers, two with learning disabilities, talk about how they support each other. Watch now >

Made possible by a grant from the Oak Foundation.

Being on “LD alert” 24/7 can be very tiring, and parental stress and fatigue alone takes a toll on siblings who continually have to figure out how they fit into the flow of family activity and emotions and how their needs for attention, approval and assistance can be met. With parents needing to devote additional time and resources to helping one child, the overall family dynamic is easily thrown off balance.

Siblings Have Feelings, Too

What could siblings be thinking and feeling as they watch their brother or sister struggle with learning? If they could find the right words, they might touch upon the very same emotions that were described by a psychologist in the 1940s who proposed a model of understanding human behavior. This ‘hierarchy of needs’ can readily be used to understand some of the emotions that need to be appreciated, understood and addressed by parents and other adults in order to help siblings cope with feelings of anger, jealousy, worry, guilt, and embarrassment that comprise their personal “baggage” as siblings and family members.

Physiology (having to do with comfort and the physical body)

  • “How come he gets more hugs than I do? And for things that are expected of everyone, like finishing homework!”

Safety (dealing with the need to be protected from harm)

  • “Why can’t he make his own sandwich? He just needs to be careful with the bread knife.
  • "What’s the big deal about him riding his bike to school?”

Belongingness and love (feeling attachment to others)

  • “It seems like she’s always the first one to get attention.”
  • “I’m always doing things for her; when was the last time she did something for me?”

Esteem (having your thoughts and actions valued by others)

  • “If you ask me, I’d tell you that you need to back off a little; you’re doing things for him that he should be doing for himself.”
  • “What about my report card? Pretty good, huh?”

Knowledge and understanding (seeking information)

  • “When will her LD go away?”
  • “Is she ever going to be able to do her work on her own?”

Aesthetic (deriving pleasure and triggering emotion)

  • “He’s got a great laugh, even though his sense of humor is weird.”
  • “I wish I knew how to really help him when he’s feeling down on himself.”

Self-actualization (having “peak experiences” that provide self-fulfillment)

  • “I know we’re very different, but we’ll always be there to support each other.”
  • “They said he couldn’t learn how to play guitar, and I taught him!”

Transcendence (connecting to something beyond yourself to help others)

  • “Everyone deserves to be appreciated for who they are and not just what they can do.”
  • “I know how important it is to spend time with him and his friends; they really look up to me and know that I will treat them with respect (even though they can be annoying and immature at times).”

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How can I raise a gracious loser?

While it’s perfectly natural for your child to be disappointed when she loses something she’s worked hard for, like the championship soccer game, it is important for her to learn to accept loss without feelings of bitterness or low self-esteem. A child who doesn’t learn to lose graciously has a hard time making friends and is often frustrated by failures. Here are some ways to encourage a sourpuss to sweeten up.

  • Play on your child’s sense of empathy. At this age, she’s starting to develop the ability to put herself in another person’s place. She can now begin to understand that getting angry when she doesn’t win hurts the feelings of the people she’s playing with. Ask her to think about how it would feel if someone got angry at her when she did something she was proud of. Tell her that it’s okay to be sad about losing, but she should try not to hurt others because of it.
  • Play cooperative games. Noncompetitive games eliminate winning and losing altogether and help your child learn what it’s like to play on a team. Try hitting a balloon back and forth, or play a game of Chinese checkers in which the idea is to get your marbles on her side and hers on your side at roughly the same time. As children get older, they will have to start playing with teammates to accomplish a common goal, and cooperative games give them a great foundation for this.
  • Emphasize effort, skill, and fun. It’s trite but true: “It’s not whether you win or lose but how you play the game.” Your job is to get your child to take this adage to heart. After she plays a game with a friend, ask, “Did you have a good time?” instead of “Who won?” Offer praise for anything done well, no matter how small it may seem. The more you can get your child thinking about developing the skills needed to be a good player — regardless of the outcome — the less important winning becomes.
  • Teach your child how to win and lose well. Show her what it means to be a good winner and a good loser. Tell her that good winners don’t brag about victories or make fun of another player’s skills. And help her become a good loser by giving her opportunities to lose as she plays against you. It seems harsh, but she’ll never learn the skill if she doesn’t practice it. Most important, don’t let her see you being a poor sport. Take your losses well, and always congratulate the winner.

If your child regularly “loses it” when she loses, you might need to take a break from game playing altogether. Turn the focus to other areas of her life that she can feel good about. And teach her that mistakes are okay by not reacting harshly when she makes one. For example, instead of getting angry about a bad grade in school, talk about what she can do to do better. In time, you should see some improvement.

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Parenting: Don’t Praise Your Children!

Let’s start with the purpose of praise: to encourage children to continue to engage in positive behaviors that produce positive outcomes. Now you can start to see the problems with “good job!” First, it lacks specificity. It doesn’t tell children what precisely they did well and without that information they can’t know exactly what they should do in the future to get the same outcome. Second, “good job!” focuses on the outcome rather than the process. If you’re going to be lazy with your praise, at least say, “Good effort!” because it focuses them on what they did to do a good job.

Unfortunately, many parents have been misguided by the “self-esteem movement,” which has told them that the way to build their children’s self-esteem is to tell them how good they are at things. Unfortunately, trying to convince your children of their competence will likely fail because life has a way of telling them unequivocally how capable or incapable they really are through success and failure.

The reality is that children don’t need to be told “good job!” when they have done something well; it’s self-evident. They do need to be told why they did well so they can replicate that behavior in the future to get the same positive outcome.

Research has shown that how you praise your children has a powerful influence on their development. The Columbia University researchers Claudia Mueller and Carol Dweck found that children who were praised for their intelligence, as compared to their effort, became overly focused on results. Following a failure, these same children persisted less, showed less enjoyment, attributed their failure to a lack of ability (which they believed they could not change), and performed poorly in future achievement efforts. Says Dweck: “Praising children for intelligence makes them fear difficulty because they begin to equate failure with stupidity.”

Too much praise of any sort can also be unhealthy. Research has found that students who were lavished with praise were more cautious in their responses to questions, had less confidence in their answers, was less persistent in difficult assignments, and less willing to share their ideas.

Children develop a sense of competence by seeing the consequences of their actions, not by being told about the consequences of their actions. The researchers Mueller and Dweck found that children who were praised for their effort showed more interest in learning, demonstrated greater persistence and more enjoyment, attributed their failure to lack of effort (which they believed they could change), and performed well in subsequent achievement activities. Rewarding effort also encouraged them to work harder and to seek new challenges. Adds the Clark University researcher Wendy Grolnick: “Parental encouragement of learning strategies helps children build a sense of personal responsibility for control over-their academic careers.”

Based on these findings, you should avoid praising your children about areas over which they have no control. This includes any innate and unalterable ability such as intelligence, physical attractiveness, or athletic or artistic gifts. You should direct your praise to areas over which your children have control-effort, attitude, responsibility, commitment, discipline, focus, decision making, compassion, generosity, respect, love, the list goes on. You should look at why exactly your children did something well and specifically praise those areas. For example, “You worked so hard preparing for this test,” “You were so focused during the entire chess match,” and “You were so generous for sharing with your sister.”

Particularly with young children, you don’t need to praise them at all. The best thing you can do is simply highlight what they did. For example, if your toddler just climbed a playground ladder for the first time, just say, “You climbed that ladder by yourself.” Their smile of pride will tell you that they got the message you wanted them to get, namely, “I did it!” Nothing more needs to be said.

As another alternative to praise, just ask your children questions. You can find out what your children thought and felt about their achievement, for example, “What did you enjoy most about your performance?” and “How do you feel about what you just did?” Allow your children to decide for themselves how they feel about their accomplishments, enable them to reward themselves for their own good actions, and encourage them to internalize what they observed about their own achievement efforts.

Or really go out on a limb and don’t say anything at all to your children. As I just mentioned, kids know when they do well. By letting them come to this realization on their own, they learn to reinforce themselves and they don’t become praise junkies dependent on you for how they feel about their efforts and accomplishments.

Here is my challenge to you. First, next time you’re at the playground or a youth sports competition, take note of what parents say to their children. I’ll bet you hear “Good job!” (or some variation) constantly. Next, monitor what you say to your children in the same situations. Then, erase “Good job!” from your vocabulary. We’ve already established how useless it is. Finally, start to praise your children in the healthy ways I just described. When you have broken yourself of the “Good job!” habit, you can then pat yourself on the back and tell yourself, “Good job!”

Parents Wonder: Why So Much Homework?

As the movement against excessive homework continues to grow, some parents say they’re drawing a line in the sand between home and school. Schools, in turn, are starting to rethink the role of homework and how it should be assigned.

If homework serves simply as busy work — proof that kids are “learning,” then that time is wasted, some say. Parents are sensitive to pressures on their children and want them to have down time when they get home from seven hours in school. If the work isn’t stimulating, then why do it?

“I just think that schools need to be a little more thoughtful about their policies for homework and work with the teachers to make sure that whatever homework that they do assign are rich, valuable experiences for the kids, and will actually be corrected,” said Jolene Ivey, mother of five boys in a discussion on NPR’s Tell Me More.

“The teachers have my kids for seven hours a day and when my kids get home I like for them to be able to do something else.”

“We’re teaching to the test, so a lot of the instruction that should be going on in the school environment is not there,” said Stephen Jones, an educator and a father. “Giving homework gives them an additional opportunity to give them work.” He doesn’t necessarily think that’s the worst thing, but he said homework should allow different learning styles to flourish so that it’s both more motivating and more fun for kids when they are at home.

Proponents of homework say that the ability to buckle down and focus on homework after a long day is a key skill that young people will need in college and beyond. If high schools don’t assign enough homework, graduates will be unprepared when they confront heavy work loads in college.

But Kenneth Goldberg, psychologist and author of “The Homework Trap,” argues that success in college is due more to self-confidence. He argues that homework highlights “under the radar” learning disabilities in children that make it much harder for some to finish work at home. One of his children struggles with homework on a nightly basis, leading Goldberg to conclude that homework batters the struggling child with negativity, challenging his self-confidence instead of nurturing it.

Goldberg has a few simple solutions to offer parents and teachers about how to avoid the homework trap and increase productivity. He promotes the idea of designating specific amounts of time to homework, regardless of whether the project gets done and then discussing a different set of expectations with the school.

He points them out in a Wall Street Journal article:

1. Time-bound homework. Just like school starts and stops by the clock, define homework as a fixed period of time. See what the child can do in a reasonable amount of time and work with that child on using the time well.

2. Reduced penalties. Zeros factored in 25 percent of the grade is too harsh of a penalty to alter behavior. Lesser consequences will prove more effective in both mobilizing the child and allowing the parent to approach the issue calmly.

3. Respect lines of authority. Teachers are in charge of their classrooms. Parents should tread lightly when it comes to telling them what to do. Parents are the people in charge of their homes; teachers should not tell parents how to organize their homes. Ultimately, when decisions are to be made about behaviors in the home (i.e. homework), the parent needs to be the one with the final say.

“Teachers should recognize that parents are the head of the home, teachers are the head of the classroom, and that homework is given with the permission of the parents,” Goldberg said.

For parents like Ivey, who want their kids to succeed in school, the homework conundrum has become inescapable.

“Homework is such a miserable experience in my life,” Ivey said. “The teachers have my kids for seven hours a day and when my kids get home I like for them to be able to do something else.”

How much homework does your child have and how do you get them motivated to get it all done?

Sleep requirements: A guide for the science-minded parent

What are your family’s sleep requirements?

Even the experts don’t know for sure.

The most surprising thing about sleep requirements is how little we know about them (Hunt 2003).

The official-looking charts we see published everywhere—-the ones telling us that adults need 7 hours of sleep, or that grade schoolers need 10 hours of sleep—-are based on how much time the average individual spends in bed.

The charts don’t tell us how much of this time is actually spent sleeping.

They don’t tell us how much variation there is between individuals.

And, because the averages are based on specific populations—-typically, middle-class European or American populations (e.g., Iglowstein et al 2003; Armstrong et al 1994; Roffwarg et al 1966)—-the sleep charts don’t tell us how sleep time varies across cultures.

Nor do sleep charts tell us how sleep has changed across historical periods.

Most importantly, the charts can’t tell us what your specific sleep requirements are.

Knowing how much time people spend in bed is somewhat helpful, but it doesn’t tell us if these people are getting the right amount of sleep.

As the National Center on Sleep Disorders Research has noted, we need new, large-scale, controlled studies that measure both sleep and biological outcomes (Hunt 2003). Unfortunately, such studies are uncommon.

Notable exceptions are recent studies focusing on behavior problems and obesity.

For example, a study of 297 Finnish families with children aged 5-6 years, researchers found that kids who slept less than 9 hours each day had 3-5 times the odds of developing attention problems, behavior problems, and other psychiatric symptoms (Paavonen et al 2009).

Another recent study tracked the development of obesity in young children.

In that study, researchers recorded the body weights and sleep habits of kids under five years of age. Then, five years later, they measured the kids again.

The study revealed a link between sleep loss and obesity. Kids who’d gotten less than 10 hours of nighttime sleep at the beginning of the study were twice as likely to become overweight or obese later on (Bell and Zimmerman 2010).

Moreover, researchers found that the timing of sleep mattered. When it came to reducing the risk of obesity, daytime naps didn’t help. For young children, the crucial factor was getting more than 10 hours of sleep at night.

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