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The birth of a child with a disability, or the discovery that a child has a disability, can have profound effects on the family. In "You are Not Alone," the first article in this News Digest, Patricia McGill Smith offers the insights that she and others have gained through their own experience of having a child with a disability. In this article, we will provide additional information to support the life cycle, health, and well-being of the family when a member has a disability.

It is with a great deal of humility that we are even attempting to describe what the future may hold for you and your family. On the one hand, we want you to be as prepared as possible so you can negotiate the challenges that may await your family. On the other hand, we recognize that individual variation and differences are the rule when a child has a disability. Researchers often base their findings on group data-what happens to the majority of people in a circumstance. However, what might be "true" in a research sense may not be at all true for your family. Therefore, while we hope this article will guide you to sources that are helpful, take from our discussion only what you need.

The Journey

Growth is endless and our lives change and change us beyond anticipation. I do not forget the pain-it aches in a particular way when I look at Jessy's friends (her paid companions), some of them just her age, and allow myself for a moment to think of all she cannot be. But we cannot sift experience and take only the part that does not hurt us.¹

No parent wants his or her child to be sick, disabled, or harmed in any way. It is not an experience anyone expects to have; rather, it is a journey that is unplanned. The terrain families must travel is often rough in places. And yet, the majority of families are able to find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges that may accompany their child's illness or disability.

Many parents have described the progression-and pendulum-of feelings they experienced upon learning that their child has an illness or a disability. Patty McGill Smith touched upon many of these emotions in her article-shock, denial, grief, guilt, anger, confusion. The type of emotions parents experience, as intense and overwhelming as they may be, are also normal and acceptable. Stability does return, both to the individual and to the family. Parents begin to search for needed information. Many report feelings of personal growth that are often, in retrospect, astounding to them. One mother, reflecting on life after the birth of a child with spinabifida and other disabilities, says:

I have learned, and grown, more since Dylan's birth than any other time in my life. You learn patience, and you get to witness miracles that you otherwise would have been too busy to have noticed... You learn acceptance, you realize you have been wrong to judge, and you learn that there is a thing called unconditional love.²

Taken together, the many suggestions and insights offered by parents who have lived for years with the experience of disability in the family can provide parents who are new to the experience with much guidance and support. The remainder of this article will outline many of the ways that parents have helped themselves and those they love adjust to living with and caring for a child with special needs.

Access Information and Services One of the first things you can do that may prove enormously helpful, now and in the future, is to collect information-information about your child's disability, about the services that are available, and about the specific things you can do to help your child develop to the fullest extent possible. Collecting and using the information available on disability issues is a critical part of being a parent of a child with special needs. Fortunately, there is a great deal of information available on many disabilities and many disability issues.

Join a Group

Much of the information that will be helpful to you is in the hands, heads, and hearts of other parents like yourself. For this reason, it is worthwhile to join a parent's group. Some groups are organized around one particular disability (e.g., cerebral palsy, Tourette syndrome, Down syndrome), while other groups draw together parents who, irrespective of the disabilities of their children, have similar concerns, such as daycare, transportation, coping, or finding out about and supporting special education in their community. Within each of these groups, information, emotional and practical support, and common concerns can be shared. The power of this mutual sharing to combat feelings of isolation, confusion, and stress is a consistent thread running throughout the literature written by and for parents.

Our children had Down syndrome, seizure disorder, holes in the heart, premature birth, deafness, and cerebral palsy. I hated the repeat surgeries, but one mother wished her child had a condition that doctors could fix. I struggled with how to respond to strangers, but another mother wanted her child's condition to be visibly obvious so strangers would understand why she wasn't doing what other six-month-old babies did..It was powerful to simply congregate with other mothers whose babies had special needs, hear the variation in stories, see the experience refracted through the crystal of multiple identities.³

Parent groups aren't only for mothers, though. Don Meyer writes of running "fathers-only" workshops where fathers came together to exchange insights and trade war stories.

Often the din of the conversation was such that we were asked "to keep it down" by presenters in neighboring rooms. Fathers became so involved in talking to their peers that we sometimes needed to shoo them out of the room at the end of the meetings...All this from fathers who "don't say anything." Clearly these men have much to say, and much to offer one another.⁴

There are many ways to identify a parent group in your area. A good starting place is the NICHCY State Resource Sheet, which can help you identify groups in your state. The state parent training and information (PTI) center (which is listed on NICHCY's State Resource Sheet) is also a good resource.

Read Materials Written By (and for) Parents

You may also find it helpful to read many of the excellent resources-books, articles, Web sites-that are available on disability issues. Some are quoted in this publication. Others are listed on our disability fact sheets. Worth-while suggestions about what to read can come as well from talking to a local librarian, your child's teacher, or other involved professional; contacting a national, state, or local disability group; or talking to other parents of children with disabilities.

Find Out About Services

The search for available services is a challenge for families and one that continues as the child's needs change. Most of these services are made available because of legislation at the federal and state levels. For a quick read on the educational rights of children and youth with disabilities, NICHCY offers Questions Often Asked by Parents about Special Education Services and Questions and Answers about IDEA. These free publications are available in English and in Spanish on [the NICHCY] Web site or by contacting [NICHCY]. A few others [are listed] below.

Typically, there are many services available within communities, districts, and states to assist you in meeting the needs of your child with disabilities and your family. Families with a young child with disabilities (birth through the third birthday) should access early intervention services, which are designed to identify and treat developmental problems as early as possible. For school-aged children with disabilities, special education and related services can be important factors in addressing a child's educational needs.

Early intervention services. Early intervention services are designed to address the needs of infants and toddlers with disabilities as early as possible. These services can range from feeding support from a nutritionist in a hospital to developing a complete physical therapy program for an infant with cerebral palsy. However, these services are not just for the child with special needs. When framing the law describing early intervention services, Congress recognized that families are central in a young child's life. Therefore, the family's priorities, concerns, and resources are a major consideration when planning services for infants and toddlers with disabilities. The plan that is developed through this process is called an Individualized Family Service Plan (IFSP).

Parents, too, can benefit from early intervention services. As full members of the team developing the program for their child, they can learn skills that may be useful for a long time-skills in helping their child learn and develop, as well as skills in decision-making, planning, being of support to others, and influencing policy-making in their community.

The services themselves are offered through a public or private agency and are provided in different settings, such as your home, a clinic, a neighborhood daycare center or Head Start program, a hospital, or the local health department. Initial evaluation and assessment of your child will be provided free of charge. Services may also be provided at no cost, although this may vary from state to state. Some states charge a "sliding-scale" fee for services.

The NICHCY State Resource Sheet identifies the name and telephone number of your state's contact person for programs for infants and toddlers with disabilities.

Special education and related services

Through the mandates of two federal laws-the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973-each eligible child with special needs is guaranteed a free appropriate public education designed to address his or her unique needs. This education is planned by a team, including the parents of the child.

Thus, as parents, you are key participants in the team that determines what type of special education your child will receive. Together, the members of your child's team develop an Individualized Education Program (IEP), which states in writing the educational program that is planned for your son or daughter.

There are many books and Web sites that are particularly useful if you are seeking to understand and access special education services. If you're interested in reading more on the subject, ask us what resources are available. [NICHCY will] be pleased to connect you with the many books, articles, and Web sites on the subject. Material is also available from NICHCY [1-800-695-0285] to explain the special education process: [Parent's Guide to Accessing Programs for Infants, Toddlers, and Preschoolers with Disabilities*; Your Child's Evaluation*; Developing Your Child's IEP; Parent to Parent Support; Questions Often Asked by Parents about Special Education Services*; Questions and Answers about IDEA*; Related Services*; and much more. (*Also available in Spanish)]

Supporting and Empowering the Family

You're the Heart of the Family

Many factors can influence the well-being of a family. One factor is certainly the emotional and physical health of the parents. You, as parents, are definitely the heart of the family. You are the ones who deal with the issues associated with your child's disability-doctors, child care providers, family members, your child's school, the professionals who work with your child. You also maintain the household-working to pay the bills, shopping, cooking, cleaning up, taking care of other children. Is it any wonder that many parents of children with disabilities report times of feeling overwhelmed?

Therefore, it is very important for you, as parents, to take some time to care for yourselves as individuals: getting enough sleep, eating regular meals, taking a short walk, and doing the things that you really enjoy, even if you can only squeeze them in occasionally. As one mother relates:

I would sometimes retreat to my "tower" and pretend that I had no responsibilities other than to amuse myself with a good book or a soothing tape. The respite usually didn't last more than a half hour, and it was never enough, but it helped me break the "martyr" pattern of thinking I was required to live and breathe only for my children. In those brief moments of quiet reflection I could renew my sense of self and remember that I was important, too; that I was Kate, a person, with lots of abilities and interests that did not all coincide with my role as Mommy. I came to realize that a little selfishness is not a bad thing. If I could enjoy myself more, I could enjoy my children more.⁵

Many families will be single-parent families, but for those who are not, the relationship between the parents is a factor that can influence the family's well-being. When the parents' relationship is a strong and supportive one, it enriches family life for all members. Conversely, when there are problems in the relationship, the tension affects the rest of the family as well. This is stating what most of us already know-that marriages undergo change with the birth of a child, any child. But when a child in the family has special needs, this change may be even more profound. As Kelly Harland puts it, "[H]ow unexpectedly it all unfolds. One moment, you and your lover are singing along in bad Italian with Venetians in a crowded bar...red wine pouring out of nowhere. And the next minute, the two of you are filling out disability forms for your tiny son."⁶

Much of the literature written by parents discusses ways for parents to protect their relationship. One point emerges again and again, and that is the importance of making time for each other: meeting for lunch, getting away for a few hours together, sharing an activity. Talking to each other and really listening are also important-and conversations do not always have to revolve around the children in the family. Finding other topics to discuss can do much to revitalize parents and preserve intimacy between them. It is also important to recognize that there are times when one partner needs to have space. As one parent puts it, "Realize that you do not deal with this stress in the same way your spouse does. Let your spouse deal with it in their own way, and try to come to an understanding of your differences."⁷ Another parent shares, "At these lonely moments, the greatest gift was simply to let the other be."⁸

Sharing the duties of providing care is also necessary, although couples report that they often have to work hard at communicating in order to achieve the "we-ness" that goes behind teamwork. Many parents have found it is necessary and helpful to seek joint counseling. Through this process, they grew to understand each other's needs and concerns more fully and found ways of discussing and resolving their differences. As one parent says, "We steer a rocky ship, my husband and I...We have had to check in with the therapist, sometimes once a year, sometimes once a week. We've experienced a hard distance between one another from time to time, as Will in all his complexity takes over every spare second of our lives. We have hung on, though. Our hearts are bonded by something that goes even deeper than love."⁹

Brothers and Sisters

We know from the experiences of families and the findings of research that having a child with a disability powerfully affects everyone in the family. This includes that child's brothers and sisters. Many authors and researchers have written with eloquence about how the presence of a disability affects each sibling individually, as well as the relationships between siblings.

The impact, according to the siblings themselves, varies considerably from person to person. Yet there are common threads that run through their stories.¹⁰ For many, the experience is a positive, enriching one that teaches them to accept other people as they are. Some become deeply involved in helping parents care for the child with a disability. It is not uncommon for siblings to become ardent protectors and supporters of their brother or sister with special needs or to experience feelings of great joy in watching him or her achieve even the smallest gain in learning or development. Megan, age 17, says of her life with her brother who has Down syndrome:

Every day Andy teaches me to never give up. He knows he is different, but he doesn't focus on that. He doesn't give up, and every time I see him having a hard time, I make myself work that much harder...I don't know what I would do without Andy. He changed my life...If I had not grown up with him, I would have less understanding, patience, and compassion for people. He shows us that anyone can do anything.¹¹

In contrast, many siblings experience feelings of bitterness and resentment towards their parents or the brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents' energy, attention, money, and psychological support flow to the child with special needs.¹² As Angela, age 8, puts it, "[T]here are times when I sit down and think, 'It's not fair!'"¹³

And many, many siblings swing back and forth between positive and negative emotions. Helen, age 10, whose sister has severe mental retardation and seizures, begins by saying that she's glad to have a sister with special needs. "It has opened my eyes to a world of people I never would have known about."¹⁴ But she also says, "Sometimes I wish I had special needs. I think that a lot when Martha gets ooohed and aahed over and nobody even thinks about me."¹⁵ And then in the next breath, Helen says, "Another thing is that it really makes me mad when kids slap their chest with their hands and go, 'I'm a retard!' It made me so mad!"¹⁶

The reaction and adjustment of siblings to a brother or sister with a disability may also vary depending upon their ages and developmental levels. The younger the nondisabled sibling is, the more difficult it may be for him or her to understand the situation and to interpret events realistically. Younger children may be confused about the nature of the disability, including what caused it. They may feel that they themselves are to blame or may worry about "catching" the disability. As siblings mature, their understanding of the disability matures as well, but new concerns may emerge. They may worry about the future of their brother or sister, about how their peers will react to their sibling, or about whether or not they themselves can pass the disability along to their own children.¹⁷

Clearly, it is important for you to take time to talk openly about your child's disability with your other children, explaining it as best you can in terms that are appropriate to each child's developmental level. As Robert Naseef remarks, "Just as parents need information, so do siblings, on their level."¹⁸

If you're concerned about sibling issues, let NICHCY put you in touch with resources that can help you open up the lines of communication and address the needs of your nondisabled children. You may also find there is a support group available to your children, which can provide an "excellent outlet" for siblings to share their feelings with others in a similar situation.¹⁹ The Internet also offers the possibility of connection and sharing. Visit the area of NICHCY's Web site called Zigawhat! to identify disability-related Web sites that all your children can enjoy or appreciate.

Your Child with Special Needs

Much of how you raise your child with a disability will depend on your family's personal beliefs about childrearing, your child's age, and the nature of his or her disability. An important point to remember is that most of the regular child-raising issues will apply-children with disabilities will go through the usual childhood stages. They may not go through stages at the same age, at the same rate, or use the same words as children without disabilities, but they are children and kids are kids.

We, as parents, may believe that all children should be treated the same, but in practice that is usually not the case. Why? Because anyone who has been around children, even infants, knows they have different personalities and react differently to similar situations. We encourage and coax the shy child and set limits for the rambunctious one. We tell the loud ones to be quiet and the quiet ones to speak up. We offer different activities to the child who loves to paint than to the one who wants to play ball. Children just are not the same-but they should have the same opportunities.

Among their opportunities should be the chance to assume increasingly greater degrees of responsibility and independence. There may be many ways in which your child can help himself or herself or other members of the family, including doing chores around the house. You will need to consider what these activities might be, given your son or daughter's disabilities and capabilities. As you expect and encourage your child to assume responsibility, his or her sense of pride and competence will also increase.

Conversely, to not expect or encourage your child to contribute to self-care or household matters may send the message that he or she is not capable of helping. Dependence is fostered instead. As one mother insists, "Let him do things for himself. Don't baby him. My father-in-law noticed how Chrissy can manipulate people very well...[His] comment was, 'Boy, he wouldn't walk anywhere if he could find someone to carry him all over.' Yup. That's why we don't carry him!"²⁰

Of course, the nature and severity of your child's disability may affect how much he or she is able to participate in household duties and so on.

Peggy Finston remarks:

The issue, then, for each of us is what is a "realistic" amount of normality to expect from our child? If we expect too much, we run the risk of rejecting him as he is. If we expect too little, we will fail to encourage him to do the most he can with himself. There is no one answer for all of us, or even for all of us dealing with the same condition. The best we can do is to realize that this is an ongoing question that we need to consider.²¹

Another issue that may concern you is what (or whether) to tell your child about his or her disability. As with siblings, the child with special needs may also have a need for information and perspective about what makes him or her different.

Now my hug becomes tighter, closer. I feel my breath in his tousled hair.

"Will, do you ever wonder why you get so scared when something comes out of the blue, why it upsets you so much?" He sniffles. "Yeah."

I hesitate. I'm feeling terribly warm. I never wanted to introduce my child to the label someone else created for him. And yet an instinct tells me it may help him....²²

This is how Kelly Harland describes the conversation she had with her son when she told him about his disability, autism.

And now he's still. He has calmed down. He's listening.

...And silence, as I try to imagine where to go next. Maybe I'm all wrong. Maybe I should never have used that word. But an odd rush comes over me. It feels like, with this tentative back-and-forth, we've suddenly crashed through some floodgate....Has Will known for awhile that he has a problem; has he been waiting for his mom to explain it to him? There is in all this talk something for both of us to hold onto, maybe in this one moment a way to quell the terror, or even rise above it.²³

As your child grows and matures and especially as he or she edges into young adulthood, it may be very helpful for him or her to be able to discuss the nature of the disability. This includes what special accommodations he or she needs in order to succeed in school and other settings. You may wish to involve your child in his or her own IEP meeting, which can teach your child useful skills like self-advocacy, expressing personal interests and goals, and being involved in making decisions that affect his or her life. In fact, by law, whenever your child's transition to life after high school is going to be discussed at an IEP meeting, your child must be invited to attend the meeting. NICHCY offers A Student's Guide to the IEP (and a technical assistance guide for parents and school personnel) to help students learn about the IEP process, themselves and their disability, and how to take part in planning their own education. The two guides are available by contacting NICHCY directly or by visiting our Web site.

Grandparents (and the Rest of the Family)

Grandparents are often greatly affected by the birth of a child with a disability. "They face the double grief of their grandchild's disability and their own child's pain."²⁴ It is important to remember that they will need support and information, too. (This is true for other members of the family as well.)

Therefore, your parents and other members of the extended family need to be given opportunities to get to know your child as a person and not just a person with disabilities. Help them to understand your child's strengths and needs, help them to accept him or her as part of the family. Allowing family members to become involved with your child may also allow you some much-needed time away from the responsibilities associated with caring for a child with special needs.

Care Givers

All parents, at some time, will probably seek child care. For families with a child who needs more supervision or specialized assistance, child care may be difficult to find-or feel comfortable with. However, even if you do not work outside the home and do not need regular child care, you may benefit greatly from having child care on a periodic or even an ongoing basis. This will give you time to take care of personal matters, enjoy some leisure activity, or be relieved of the constant need to care for a child with a disability or chronic illness.

You may also benefit from respite care, a system of temporary child care provided by people familiar with the needs of children with disabilities. "Temporary" can range from an hour to several months, depending on the respite care provider and the needs and desires of the family. Many respite care providers have undergone specialized training and can knowledgeably care for children whose needs may range from close supervision to medical care. Respite care can be provided to infants, teenagers, or adults with special needs. In some cases, the respite provider may be able to provide care only for the child with the disability; in other cases, care may be available for siblings as well. Respite care generally differs from daycare in that it is not available on a daily basis to allow a parent to return to the work force.

To find out more about respite services, contact the ARCH National Respite Network and Resource Center. ARCH operates the National Respite Locator Service whose mission is to help parents locate respite care services in their area. Call the Locator Service at (800) 773-5433 (toll free), or visit the ARCH Web site.

Although many parents initially may feel reluctant to leave their child with special needs in the care of someone else, those who have tried it give ample testimony to its value in restoring their energy, sense of humor, and perspective.

Working with Professionals

Over ten years ago, parent Cory Moore, speaking directly to professionals, wrote:
We need respect, we need to have our contribution valued. We need to participate, not merely be involved. It is, after all, the parent who knew the child first and who knows the child best. Our relationship with our sons and daughters is personal and spans a lifetime.

²⁵
This sentiment echoes throughout the parent literature and in the hearts of parents everywhere. Not surprisingly, many of the materials written by parents for other parents offer insight into how you might work together with professionals for the benefit of your child and family. The best relationships are characterized by mutual respect, trust, and openness, where both you and the professional exchange information and ideas about the best care, medical intervention, or educational program for your child. Both you and the professional need to speak clearly about issues and listen carefully. Indeed, both of you have important expertise to share.

You, for example, have intimate knowledge of your child with special needs. You live with and observe your son or daughter on a daily basis and can contribute invaluable information about his or her routine, development, history, strengths, needs, and so on.

The professional, too, has specialized knowledge to contribute-that of his or her discipline. Often you must rely upon the professional's judgment in matters that are critical to the well-being of your child.

Thus, there should be a mutuality in the parent/professional relationship. This can take time to develop and may require effort from both parties. To that end, many parent writers suggest:

• If you are looking for a specialist with whom you can work well, ask other parents of children with disabilities. Often, they can recommend a good speech or physical therapist, doctor, dentist, or surgeon.
• If you don't understand the terminology a professional uses, ask questions. Say, "What do you mean by that? We don't understand."
• If necessary, write down the professional's answers. This is particularly useful in medical situations when a medication or therapy is to be administered.
• Learn as much as you can about your child's disability. This will assist you with your child, and it can help you participate most fully in the team process.
• Prepare for visits to the doctor, therapist, or school by writing down a list of the questions or concerns you would like to discuss with the professional.
• Keep a notebook in which you write down information concerning your special needs child.This can include your child's medical history, test results, observations about behavior or symptoms that will help the professional do his or her job, and so on. (A loose-leaf notebook is easy to maintain and add information to.)
• If you don't agree with a professional's recommendations, say so. Be as specific as you can about why you don't agree.
• Do whatever informed "shopping around" is necessary to find a doctor who understands your child's needs, is willing to work collaboratively with other medical professionals, and with whom you feel comfortable.
• Measure a professional's recommendations for home treatment programs or other interventions against your own schedule, finances, and other commitments. You may not be able to follow all advice or take on one more thing, feeling as Helen

Featherstone did when she wrote, "What am I supposed to give up?...There is no time in my life that hasn't been spoken for, and for every fifteen-minute activity that has been added, one has to be taken away."²⁶ Peggy Finston points out that "most professionals won't be familiar with the sum total of our obligations and will not take it upon themselves to give us permission to quit. This is up to us. It's in our power to make the decision."²⁷

In conclusion, it is important that the parent/professional relationship empower the parent to be a full participant in information-gathering, information-sharing, and in decision-making. However, it is ultimately up to you to decide what role(s) you want to take in this process and what role(s) you need help with. It is helpful to know that families do, indeed, choose different roles in relationship to professionals. Some parents want to allow professionals to make most decisions about their child, others want to serve as an informant to the professional, some want veto power, and some parents want a shared role in the intervention with their child.²⁸

You are also free to change your mind about the role or level of involvement you may want or be able to assume regarding your child's services. You may find that you choose different roles at different times for different purposes. Be as direct as possible about what you want or don't want to take on in this regard.

Summary

In this News Digest, we have looked at many of the issues facing you as parents of a child with a disability. Learning that your child has a disability or illness is just the beginning of the journey. At times, you may feel overwhelmed by the challenges associated with disability and by the strength of your own emotions. And while you may feel alone and isolated, there are many supports available. Other parents can be invaluable sources of help and information. Services are also available through public agencies that can assist your entire family-early intervention services for infants and toddlers and educational services for preschoolers and school-aged children. Having access to information and supports may be critical in maintaining a stable and healthy family life.

We urge you to read, to talk to other parents who have a child with a disability, to talk with each other and with other family members, and to reach out for assistance when you need it.

We conclude with the words of Clare Claiborne Park, as she reflects upon the experience and emotions of being a parent of a child with disabilities.

This experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson of Sophocles and Shakespeare-that one grows by suffering. And that too is Jessy's gift. I write now what fifteen years past I would still not have thought possible to write; that if today I was given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands-because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.²⁹

References

1 Park, C. (1982). The siege: The first eight years of an autistic child with an epilogue, fifteen years later (p. 320). Boston, MA: Little, Brown. (A sequel to this classic parent book, called Exiting Nirvana, was published in 2001 and continues the story of Jessy into adulthood.)

2 Hickman, L. (2000). Living in my skin: The insider's view of life with a special needs child (p. 211). San Antonio, TX: Communication Skill Builders.

3 McDermott, J. (2000). Babyface: A story of heart and bones (p. 197). Bethesda, MD: Woodbine House.

4 Meyer, D.J. (Ed.). (1995). Uncommon fathers: Reflections on raising a child with a disability (p. v). Bethesda, MD: Woodbine House.

5 McAnaney, K.D. (1998). I wish: Dreams and realities of parenting a special needs child (2nd ed.). Sacramento, CA: United Cerebral Palsy Associations, Inc. (Quotation from page 22.) (Available from Amazon and from Special Needs)

6 Harland, K. (2002). A will of his own: Reflections on parenting a child with autism (p. 33). Bethesda, MD: Woodbine House.

7 Hickman, L. (2000). Living in my skin: The insider's view of life with a special needs child (p. 246). San Antonio, TX: Communication Skill Builders.

8 McDermott, J. (2000). Babyface: A story of heart and bones (p. 155). Bethesda, MD: Woodbine House.

9 Harland, K. (2002). A will of his own: Reflections on parenting a child with autism (p. 33). Bethesda, MD: Woodbine House.

10 McHugh, M. (2002). Special siblings: Growing up with someone with a disability. Baltimore: Paul H. Brookes.

11 Meyer, D. (1997). Views from our shoes: Growing up with a brother or sister with special needs (p. 89). Bethesda, MD: Woodbine House.

12 Lavin, J.L. (2001). Special kids need special parents: A resource for parents of children with special needs. New York: Berkley Books.

13 Meyer, D. (1997). Views from our shoes: Growing up with a brother or sister with special needs (p. 21). Bethesda, MD: Woodbine House.

14 Ibid, p. 41.

15 Ibid.

16 Ibid, pp. 41-42.

17 Lavin, J.L. (2001). Special kids need special parents: A resource for parents of children with special needs. New York: Berkley Books.

18 Naseef, R.A. (1997). Special children, challenged parents: The struggles and rewards of raising a child with a disability (p. 144). Seacaucus, NJ: Birch Lane Press. (A revised edition of this book was published in 2001 and is available from Paul H. Brookes.)

19 See references 10 and 12 above.

20 Hickman, L. (2000). Living in my skin: The insider's view of life with a special needs child (p. 239). San Antonio, TX: Communication Skill Builders.

21 Finston, P. (1990). Parenting plus: Raising children with special health needs (p. 72). New York: Dutton. (This book has gone out of print, but may be available in a local library, a university library, or through booksellers such as  Amazon and from Special Needs.)

22 Harland, K. (2002). A will of his own: Reflections on parenting a child with autism (p. 57). Bethesda, MD: Woodbine House.

23 Ibid, pp. 57-58.

24 Naseef, R.A. (1997). Special children, challenged parents: The struggles and rewards of raising a child with a disability (p. 157). Seacaucus, NJ: Birch Lane Press. (A revised edition of this book was published in 2001 and is available from Paul H. Brookes.)

25 Moore, C. (1993). Maximizing family participation in the team process. In L. Küpper (Ed.), Second National Symposium on Effective Communication for Children and Youth with Severe Disabilities: Topic papers, reader's guide, and videotape (pp. 43-54). McLean, VA: Interstate Research Associates. (Quota-ion from page 49.) (Available from NICHCY by special request.)

26 Featherstone, H. (1980). A difference in the family: Life with a disabled child (p. 78). New York: Basic. (Available from:  Special Needs)

27 Finston, P. (1990). Parenting plus: Raising children with special health needs (p. 188). New York: Dutton. (This book has gone out of print, but may be available in a local library, a university library, or through booksellers such as  Amazon and from Special Needs.)

28 McBride, S., Brotherson, M.J., Joanning, H., Whiddon, D., & Demmit, A. (1992). Implementation of family centered services: Perceptions of professionals and families. Unpublished manuscript, Human Development and Family Studies, Iowa State University, Ames, Iowa. (This document is not available.)

29 Park, C. (1982). The siege: The first eight years of an autistic child with an epilogue, fifteen years later (p. 320). Boston, MA: Little, Brown. (A sequel to this classic parent book, called Exiting Nirvana, was published in 2001 and continues the story of Jessy into adulthood.)

Source: National Information Center for Children and Youth with Disabilities
News Digest 20 (3rd Edition)
by Carole Brown, Samara Goodman, and Lisa Küpper
Page last modified or reviewed on January 24, 2014

New Harbinger Publications (NHP): What is worry, and how does it differ from anxiety?

Chad LeJeune (CL): Anxiety involves fight-or-flight arousal. This is a natural, "hard-wired" response that all animals have. Its purpose is to help us to respond to a crisis or problem that is right in front of us, an immediate threat. Worry is a verbal process, unique to humans, where we use our minds as a time machine, traveling into the future to encounter problems and threats that are not here yet. What makes worry different from simply planning for the future is that we are triggering this fight-or-flight response. Since the crisis has not yet arrived, and may never actually show up, this arousal can hang around for long periods of time. This can lead to health problems, difficulty getting things done, relationship stress, and other troubles.

NHP: What is the difference between worrying and caring?

CL: While worrying about someone or something may indicate that we care, worrying and caring are not the same thing. Worriers often confuse the two. For example, consider a mother who worries about her adult daughter, and expresses this by calling her several times a day. She might explain her behavior by saying something like "I only call because I care about you." However, if the primary function of the calls is to reduce the anxiety that the mother is feeling, this is worrying, not caring. When we are caring for someone or something, we are doing the things that support or advance the best interests of the person or thing that we care about. Caring has an impact on the outside that may or may not reduce the anxiety on the inside of the worrier.

Consider the difference between worrying about your houseplants and caring for your houseplants. If you are away from home for a week, you can worry about your houseplants every single day and still return home to find them brown and wilted. Worrying is not watering. Similarly, the mother who calls her daughter several times a day, even when the constant calls interfere with the daughter's ability to get things done and cause friction in her marriage, is worrying about her daughter, but failing to care for her as well as she might.

NHP: It is natural to worry about certain things. At what point does worry become excessive?

CL: Yes, occasional worry is natural. This is especially true when we are undergoing major life events or transitions. Worry only becomes a serious problem when it becomes a way of life, causes health problems, or interferes with our relationships or ability to get things done.

Some people find that much of their waking life is consumed by thoughts of all the things that could go wrong. The result of all the fight-or-flight arousal that accompanies these thoughts can include muscle aches and pains, stomach problems, fatigue, difficulty concentrating, and trouble sleeping. The irritability and edginess that come with frequent worry can have a negative impact on relationships, too. Excessive "checking in" or reassurance-seeking can become a problem in relationships. Constant worry can leave you feeling emotionally depleted and depressed. For some, these problems are compounded by drinking or the use of other drugs in an attempt to "turn off" the worry.

Worry can also affect how productive and effective you are in pursuing your goals. Worry about the future interferes with problem-solving and decision-making in the present, and often leads to a pattern of avoidance and procrastination. Worriers may be active, engaging in nervous or "antsy" behavior, but they are often not very productive.
NHP: What causes chronic worry?

CL: Worry involves two things, both of which are natural and helpful in the proper context, which come together in the worrier to wreak havoc. The first is our ability to imagine the future and plan ahead. This is a marvelous gift to mankind and has allowed us to accomplish amazing things. The second, is our ability to take control of and respond to our environment. We do this with the help of the fight-or-flight response. This too is an amazing benefit that has helped us to survive as a species. When these two things come together, however, and we are trying to control and respond to imaginary events in the future, we get into trouble. For the chronic worrier, there is often limited awareness that this is what is happening. Because they believe that the worry is helpful or productive (despite evidence to the contrary), it becomes a habitual response.

NHP: In chapter one you talk about some of the ways that worry helps us. What are some positive functions that worry serves?

CL: Actually, that chapter is about some of the ways that we believe worry helps us. It's this belief in the helpfulness of worry that is the problem. The Worry Trap defines worry as non-productive thinking that is in fact not helpful by nature. Worriers often confuse worry with more helpful processes like planning or problem-solving. If we are indeed planning or problem-solving, we are coming up with actions that we can take. When we are engaged in worry, the only outcome is more anxiety.

When we confuse worry with planning, we are like a small child in the kitchen with a mixing bowl. The child throws some flour into the bowl, tosses in a few eggs. He adds water and some sugar and stirs it all up. If we ask him what he's up to, he'll say "I'm making cookies." It looks like he's making cookies, but if no cookies come out of this process, is he really making cookies? Similarly, the worrier says "I'm planning", and much of what she does looks like planning. But if no plan comes out of this process, is she really planning? Or is she worrying?

NHP: Could you explain what acceptance and commitment therapy (ACT) is and how it can be used to treat chronic worry?

CL: ACT is a treatment approach developed by psychologist Steven Hayes and his colleagues that is gaining recognition as an effective treatment for a wide range of problems. Emerging evidence from both mental health and basic psychology research suggests that treatment approaches that primarily emphasize changing our internal experience may not only have limited effects, but may even make some problems worse. ACT is one of several new approaches based on acceptance and mindfulness of the present moment. These approaches have been shown to be useful in treating anxiety, depression, substance abuse, eating disorders, trauma, couples' distress, and personality disorders.

The essential components of ACT include letting go of the struggle to control unwanted thoughts and feelings, being mindfully aware of the present moment, and committing to a course of action that is consistent with what you value most in life. In this way, ACT is about both acceptance and change. It is the acceptance of the thoughts and emotions that accompany a difficult but valuable act that allow you to take that action. As applied to the problem of chronic worry, acceptance of the uncertainty of the future and anxious thoughts and feelings about that uncertainty, allow you to focus more clearly on the present and to take the steps that move you closer to the life you truly want to live.

NHP: In chapter six you discuss the concepts of "content" and "context." Could you explain those concepts and the distinction between the two?

CL: When we experience strong emotions, there is a tendency to respond as though we are our emotions. This is even reflected in our language when we say things like "I am anxious." The truth is, even at its strongest, anxiety is just one aspect of your experience. As such, it is something separate from the "You" that is experiencing it. You are not anxiety any more than you are the screen of this computer. The anxiety, the computer, and the words on the screen are all the "content" of your experience. As the experiencer, you are the larger "context" for this experience. An increased awareness of the separate nature of your self (context) and your experience (content) can make it easier to accept whatever the content is at a given time. While content is constantly changing, the context (you) endures.

This is like the difference between a movie theater and the movie that is playing there. You may not like the movie that you're watching, but next week there will be a different feature. The theatre remains the same, no matter what is on the screen. The Worry Trap uses mindfulness training as well as other techniques to help you to move toward perceiving anxiety as just another aspect of your experience. The exercises help you to shift from operating at the content level of awareness to the context level, recognizing that you are the theater, not the feature film.

NHP: What is the LLAMP approach and how can it help a chronic worrier?

CL: The Worry Trap presents a five-step model to guide you through learning the component skills of acceptance and commitment therapy and applying them to the problem of worry. It starts by interrupting the fight-or-flight response and the accompanying impulse toward controlling your thoughts and feelings, and goes on to help you accept your thoughts and feelings and focus more on the present-moment. Finally, it guides you in taking actions directed by your values rather than by worry.

The five steps are contained in the acronym LLAMP:

• Label "anxious thoughts"
• Let go of control
• Accept and observe thoughts and feelings
• Mindfulness of the present moment
• Proceed in the right direction

The step-by-step instruction and exercises allow you to practice and develop each component as an individual skill. With practice, the steps begin to flow one into another, so that applying LLAMP becomes a fluid process. Labeling certain thoughts as "anxious thoughts" is a cue to Let go of the control response, which makes room for Acceptance and Mindfulness of your thoughts, feelings, and experience in the present moment, which allows you to Proceed with valued, purposeful action.

Reproduced with permission by New Harbinger Publications, Inc.
The Worry Trap, Chad LeJeune, PhD

Visit New Harbinger Publications

Page last modified or reviewed on January 24, 2014

by James Lehman, MSW

When you have a child who acts out and is disrespectful or disruptive, it's easy to compare him to the so-called "good kids" who never seem to get into trouble or give their parents grief. Many people feel hopeless about the possibility of ever teaching their child to "magically" become the kind of well-behaved member of the family they envisioned before they had him.

It's actually the learning process associated with consequences that changes the behavior.
The truth is that good behavior isn't magic - you can't just wave a wand and turn your child into who you want him to be. Rather, good behavior is a skill that can be learned, just like carpentry, teaching or nursing. I believe three of the most important skills for children to learn as a foundation for good behavior are: how to read social situations, how to manage emotions, and how to solve problems appropriately. If your child can learn to master these three tasks with your help, he will be well on his way to functioning successfully as an adult.

Skill #1: Reading Social Situations

The ability to read social situations is important because it helps your child avoid trouble and teaches him how to get along with others. If he can walk into a classroom, lunchroom, playground or a dance, read what's going on there, and then decide how he's going to interact in that environment in an appropriate way, he's already halfway there. So if your child sees a bunch of kids who usually tease and bully others, the skill of reading social situations will help him stay away from that group, rather than gravitate toward it.

Parents can help their kids develop these skills by getting them to read the looks on people's faces at the mall or a restaurant, for example. If your child can learn to see who looks angry, frustrated or bored, two things will happen: the first is that he will be able to identify how people might be feeling. Secondly, he'll learn that he should try to identify other people's emotions. Both are integral in learning how to read social situations.

Skill #2: Managing Emotions

It's critical for your child to learn how to manage his emotions appropriately as he matures. Managing your emotions means that it's not OK to punch a hole in the wall because you're angry; it's not OK to curse at your dad because he took your iPod away. Children need to learn that just because they feel bad or angry, it does not give them the right to hurt others.

Ask the Right Questions

If your child calls his little sister a nasty name, it's your job to first sit down and ask, "What did you see going on that you thought you needed to do that?" Not, "How did you feel?" but "What was going on?" You'll find that usually this type of behavior is generally self-centered. Perhaps your child's little sister is getting more attention, or she's watching a show, and he wants the TV, or she's playing with the video games, and he wants to play them. When your child does not know how to deal with that situation, and he becomes nasty or abusive, it's time for you to step in and put a stop to it. And I think you should very clearly state, "Just because you're angry, it doesn't give you the right to call your sister a nasty name." That's an important, direct way of teaching the skill of managing emotions.

What Giving Consequences Does (and Doesn't) Accomplish

I believe that consequences are part of accountability. In other words, your child should know that if the inappropriate behavior happens again, he will be held accountable. Saying that, I don't think people change simply because they're punished or are given consequences. Although parents often focus on them, consequences alone are not enough. Rather, it's the learning process associated with the consequences that changes a child's behavior. So it's the part of your child's thinking process that says, "Next time I'm upset, if I call Sarah a name, I'm going to be punished. Instead, I can just go to my room and cool down."

Here's the truth: you can punish kids until the cows come home, but it's not going to change their behavior. That's because the problem is actually not the behavior - the problem lies in the way kids think. This faulty thinking then gets externalized into how they behave. If you punish them for the behavior and neglect to challenge the way they think about the problem - or discuss what their options are for dealing with that problem effectively in the future - then really, what are you doing? You're punishing your child, but he hasn't learned anything and he's not going to do anything differently. In fact, he's probably just going to do it again when you're not looking.

"What Will You Do Differently Next Time?"

I think it's very important that you talk to your child about what he can do differently the next time he feels angry or frustrated. This tool is something I developed as part of The Total Transformation Program, and it's an important way to focus on changing your child's behavior. When you use this technique, it encourages your child to come up with other things he or she might do instead of using ineffective behavior. By the way, when you have this talk with your child, it should be a pretty businesslike conversation - it's not all smiley and touchy feely; it shouldn't be abusive or negative, either. Stick to the facts and ask, "What can you do differently next time?"

Skill #3: Teach Problem Solving Skills

There's No Such Thing as "Good Kids" and "Bad Kids"

I believe that the kids who are labeled "good" are children who know how to solve their problems and manage their behavior and social life, and the kids who are labeled "bad" are kids who don't know how to solve those problems. A child is often labeled "the bad kid" when he's developed ineffective actions to solve the problems that other kids solve appropriately. So this child may turn to responses that are disrespectful, destructive, abusive, and physically violent. In my opinion, there's no such thing as good kids or bad kids; there are simply kids who have learned effective ways of solving life's problems, and kids who have not.

As they develop, children have to continually adjust their problem-solving skills and learn new ones. For instance, for a three year old, being told "no" is the biggest problem in her life. She stomps her feet, she throws a tantrum. Eventually, she has to learn to deal with that problem and manage the feelings associated with it. And so those tasks continue for five-year-olds who have to deal with the first day of school and for nine-year-olds who have to change in gym. They continue for 12- and 13-year-olds when they're at middle school, which is a much more chaotic environment than they have ever faced before.

I've devoted much of my career to dealing with kids who behaved inappropriately, all the way from kids who were withdrawn and depressed to kids who were aggressive and acted out physically. I believe a key element in helping children change their behavior is for parents to learn techniques where they help their child identify the problem he/she is facing. Together, you look at how to solve problems and come up with other solutions. So talk to your child about the problem at hand and how to solve it - not just about the emotion your child is feeling.

Children with ADHD and other behavioral disorders are particularly vulnerable to low self-esteem. They frequently experience school problems, have difficulty making friends, and lag behind their peers in psychosocial development. They are more likely than other children to bully and to be bullied. It is important that parents make themselves aware of their children's concerns and respond to them in positive, consistent, and supportive ways.

In the end, there is no magic solution to good behavior. The secret is really in teaching kids how to solve problems; good behavior is simply one of the fruits on that problem-solving tree. Your goal as a parent is to give your child the tools to learn good behavior. It's never too late to get these tools, but know this: if your child can't read a situation in the ninth grade and doesn't know how to respond, reacts by getting aggressive, and then gets into trouble, how do you think they are going to handle it when they're an adult and their boss tells them something they don't want to hear? That's why it's important for you as a parent not to "wish away" the bad behavior but to start teaching your child the skills he/she needs to change the behavior for good.

Good Behavior is not "Magic"-It's a Skill: The Three Skills Every Child Needs for Good Behavior reprinted with permission from Empowering Parents. For more information, visit the Empowering Parents website.

Author: James Lehman is a behavioral therapist and the creator of The Total Transformation® Program for parents. He has worked with troubled children and teens for three decades. James holds a Masters Degree in Social Work from Boston University.
See the Total Transformation website.
Page last modified or reviewed on January 24, 2014

It is amazing what things men commit to memory, for example, key statistics for the Atlanta Braves or Chicago Bulls, specifications for next year's Corvette, or lyrics to songs from 20 years ago. However, how many dads can answer even simple questions about their children, who are as important as anyone or anything in their lives?

Here are some questions fathers can ask their children. Some may be easy, some are not, but this is not just trivia. These questions provide a marker for how aware a father is of his child and his or her world. A healthy awareness will help in so many areas of fathering. It can be as simple as going out for a soda and asking about his child's friends at school and what they like to do together. This should not turn this into an interrogation. A child can tell whether the questioner is genuinely interested or simply collecting data that may be used against him or her later. It is simply to get to know more about the various aspects of the child's life. Some examples of appropriate questions include:

• Who is your child's all-time hero?
• What is your child's most prized possession?
• Who is his or her best friend?
• What causes your child to lose sleep?
• What were your child's greatest achievements and disappointments in the last year?
• What is your child's favorite meal?
• What would your child like to do when he or she grows up?
• If your child had $20 to spend, what would he or she buy?
• What does your child most like to do with you?
• What is the most important thing you need to discuss with your child in the next 6 months?

Even for the most aware fathers, these questions may serve as a wake-up call. After asking such questions, a father may decide he needs to sit down with his child and find out more about what makes him or her tick. It could lead to a great discussion about who he or she is and hopes to become. Fathers also should listen to their child's friends, teachers, coaches, and, especially, their mothers. All of these people see a different side of the child, and they will give dads insights they would have never noticed on their own.

Canfield, K. (n.d.). Practical tips for knowing your child [On-line]. Available: http://www.fathers.com/articles/articles.asp?id=103&cat=23.
Source: Adapted from The Importance of Fathers in the Healthy Development of Children
Child Welfare Information Gateway
http://www.childwelfare.gov/pubs/usermanuals/fatherhood/append_e_5.cfm

Reviewed by athealth on February 8, 2014.

You know the type:

He leans on your desk, glares, and says loudly, "just how long is it going to take me to get some help around here?"

She comes over from next door whining: "Are you folks ever going to clean up your yard? You know, your place is the only one on the block that..."
He calls your business and demands immediate service, an extra discount, and extended terms. "...And if you can't help me, I want to speak to the owner."

She can't wait to corner you at the open house: "Did you hear about Fred and Betty?" she hisses. "Wilma told me that they..."

What is a "difficult person?" Anyone who doesn't behave as expected. We do, after all have some unwritten "rules" about appropriate behavior in our society. Be fair; wait your turn; say "please" and "thank you"; talk in conversational tones and volume... Difficult people ignore those mores, or act as if they are exempt - often while they expect you to live by the standards they're flaunting. They're usually loud, intrusive, impolite, thoughtless, selfish, and, well, difficult!

Here is a summary of guidelines and procedures which can help when you're confronted with a particularly difficult person or situation:

• Your efforts ought to be directed at solving a substantive problem, not "taking care of" a difficult person. If you insist on one "winner," there probably won't be one. (And if there is, it may not be you!)
• De-escalation of loud voice and angry gestures is usually best accomplished by modeling: lower your own level of emotional behavior and you'll probably affect the other person's actions.
• Your approach to these situations should be your own as much as possible - a good fit with your natural style. All the ideas here are legitimate - but only some will work for you.
• Preparation in advance is a big help. Learn deep breathing and relaxation techniques, cognitive restructuring, assertive skills. A confrontation is not the time to start practicing!
• If you're going into a situation where it's likely you'll confront a difficult person, set up some ground rules in advance to cover typical problems (e.g. time limits for talkers in a group meeting).
• If there are particular individuals in your life who are predictable problems, you can practice methods which are custom designed for responding to them.
• Get to know yourself and your own triggers for emotional response. As someone said, "Get to know your own buttons, so you'll know when they're pushed!"
• So-called "I-messages" really can help - take responsibility for your own feelings without blaming the other person.
• Acknowledging the other person's feelings while seeking a resolution is usually helpful. ("I can see you're really upset about this.") But be especially careful not to patronize or come off sounding like a too-empathetic Rogerian counselor.
• It's not often possible to solve a situation on the spot. Look for a temporary way out so you can seek a solution in a calmer moment.
• Remember, you do have some options for action. Any of them can cause you more trouble with a difficult person if you become a manipulator, so apply them sensitively - but firmly - and with the main goal of getting on with your life.

Adapted from Your Perfect Right: Assertiveness and Equality in Your Life and Relationships (Eighth Edition),
Robert E. Alberti, Ph.D. and Michael L. Emmons, Ph.D.
Available at online and local bookstores or directly from Impact Publishers
PO Box 6016, Atascadero, CA 93423-6016
http://www.bibliotherapy.com/
Phone 1-800-246-7228.

Reviewed by athealth on February 8, 2014.

When you hear about children killing other children, you may think, "I don't know a single child who could do such a thing." However, too often the daily news confirms that children and teens can be violent, even deadly. As parents, families, teachers, and members of the community, what can we do to help children cope with angry feelings - from frustration to rage?

Some young people turn to violence, because they do not see other ways to endure what they are feeling at that moment. They may not anticipate the repercussions of their violence.

These tips may help when you recognize a child who is withdrawing or exploding over everyday frustrations:

• Listen to what the child is saying about his or her feelings and be willing to talk about any subject. Young people today are dealing with adult problems such as love, sex, relationships, failure and rejection. Unfortunately, their minds and bodies simply are not ready for these stresses.
• Provide comfort and assurance. Tell the child that you care about his or her problems. Show confidence in his or her ability to tackle life's ups and downs.
• Tell the child that everyone experiences anger. Tell him or her about the last time you felt really angry and how you dealt with that anger in a positive way.
• Encourage the child to shift gears - to spend some time doing things he or she really likes to do - playing sports, walking someone's dog, or reading a book. A different activity can refocus thoughts and help alleviate some of the angry feelings.
• Teach basic problem-solving skills. When upsetting situations arise, the child who has practiced these skills will be more likely to think through the consequences of different actions and will, ultimately, make a better choice than violence.
• Look at how you handle your own anger. Are you setting a good example? Would you want to be imitated by a child who admires you?
• Acknowledge good behavior. When a child deals with his or her anger in a positive way, praise the positive choice. Take every opportunity to reinforce strengths. Build the child's awareness of his or her own talents and abilities.

Sidebar:Children with ADHD, ODD, and other behavioral disorders are particularly vulnerable to low self-esteem. They frequently experience school problems, have difficulty making friends, and lag behind their peers in psychosocial development. They are more likely than other children to bully and to be bullied. Parents of children with behavior problems experience highly elevated levels of child-rearing stress, and this may make it more difficult for them to respond to their children in positive, consistent, and supportive ways.

If none of these approaches seems to work, and the child stays angry or withdrawn for a long time, seek help. Talk to your family doctor or pediatrician. Together, you may decide that your child and family need help from someone with more mental health training.

Knowledge Exchange Network

Reviewed by athealth on February 8, 2014.

Myth 1: Sleep is a time when your body and brain shut down for rest and relaxation.

No evidence shows that any major organ (including the brain) or regulatory system in the body shuts down during sleep. Some physiological processes actually become more active while you sleep. For example, secretion of certain hormones is boosted, and activity of the pathways in the brain needed for learning and memory is heightened.

Myth 2: Getting just 1 hour less sleep per night than needed will not have any effect on your daytime functioning.

This lack of sleep may not make you noticeably sleepy during the day. But even slightly less sleep can affect your ability to think properly and respond quickly, and it can compromise your cardiovascular health and energy balance as well as the ability to fight infections, particularly if lack of sleep continues. If you consistently do not get enough sleep, eventually a sleep debt builds up that will make you excessively tired during the day.

Myth 3: Your body adjusts quickly to different sleep schedules.

Your biological clock makes you most alert during the daytime and most drowsy at night. Thus, even if you work the night shift, you will naturally feel sleepy when nighttime comes. Most people can reset their biological clock, but only by appropriately timed cues-and even then, by 1-2 hours per day at best. Consequently, it can take more than a week to adjust to a dramatically altered sleep/wake cycle, such as you encounter when traveling across several time zones or switching from working the day shift to the night shift.

Myth 4: People need less sleep as they get older.

Older people don't need less sleep, but they often get less sleep or find their sleep less refreshing. That's because as people age, they spend less time in the deep, restful stages of sleep and are more easily awakened. Older people are also more likely to have insomnia or other medical conditions that disrupt their sleep.

Myth 5: Extra sleep at night can cure you of problems with excessive daytime fatigue.

Not only is the quantity of sleep important but also the quality of sleep. Some people sleep 8 or 9 hours a night but don't feel well rested when they wake up because the quality of their sleep is poor. A number of sleep disorders and other medical conditions affect the quality of sleep. Sleeping more won't alleviate the daytime sleepiness these disorders or conditions cause. However, many of these disorders or conditions can be treated effectively with changes in behavior or with medical therapies.

Myth 6: You can make up for lost sleep during the week by sleeping more on the weekends.

Although this sleeping pattern will help relieve part of a sleep debt, it will not completely make up for the lack of sleep. This pattern also will not make up for impaired performance during the week because of not sleeping enough. Furthermore, sleeping later on the weekends can affect your biological clock so that it is much harder to go to sleep at the right time on Sunday nights and get up early on Monday mornings.

Myth 7: Naps are a waste of time.

Although naps do not substitute for a good night's sleep, they can be restorative and help counter some of the impaired performance that results from not getting enough sleep at night. Naps can actually help you learn how to do certain tasks quicker. But avoid taking naps later than 3 p.m., as late naps can interfere with your ability to fall asleep at night. Also, limit your naps to no longer than 1 hour because longer naps will make it harder to wake up and get back in the swing of things. If you take frequent naps during the day, you may have a sleep disorder that should be treated.

Myth 8: Snoring is a normal part of sleep.

Snoring during sleep is common, particularly as a person gets older. Evidence is growing that snoring on a regular basis can make you sleepy during the day and more susceptible to diabetes and heart disease. In addition, some studies link frequent snoring to problem behavior and poorer school achievement in children. Loud, frequent snoring can also be a sign of sleep apnea, a serious sleep disorder that should be treated.

Myth 9: Children who don't get enough sleep at night will show signs of sleepiness during the day.

Unlike adults, children who don't get enough sleep at night typically become more active than normal during the day. They also show difficulty paying attention and behaving properly. Consequently, they may be misdiagnosed as having attentiondeficit hyperactivity.

Myth 10: The main cause of insomnia is worry.

Although worry or stress can cause a short bout of insomnia, a persistent inability to fall asleep or stay asleep at night can be caused by a number of other factors. Certain medications and sleep disorders can keep you up at night. Other common causes of insomnia are depression, anxiety disorders, and asthma, arthritis, or other medical conditions with symptoms that become more troublesome at night. Some people who have chronic insomnia also appear to be more revved up than normal, so it is harder for them to fall asleep.

Adapted from Your Guide to Healthy Sleep
National Heart, Lung, and Blood Institute
NIH Publication No. 06-5271

Reviewed by athealth on February 8, 2014.

Antidepressants are prescription drugs used to treat depression and a variety of other psychological conditions such as anxiety, panic, posttraumatic stress disorder (PTSD) and obsessive compulsive disorder (OCD). Some depression drugs are also used to treat medical conditions (e.g. some tricyclic antidepressants are given for chronic pain).

Here is a list of helpful information about antidepressants (not in order of importance).

• Antidepressants help correct chemical imbalances in your brain by affecting certain brain chemicals called neurotransmitters, which are responsible for sending messages between nerve cells. Neurotransmitters are responsible for different functions in the body. For example, some antidepressants help alleviate depression by increasing the neurotransmitter, Serotonin which plays a role in a variety of functions such as mood, appetite, sleep, memory and sexual behavior. Other antidepressants increase the neurotransmitters, Norepinephrine and Dopamine. Norepinephrine manages functions in the sympathetic nervous system (e.g. fight or flight response, blood pressure, heart rate and concentration) while Dopamine plays a part in emotion, learning, motivation, pleasure, memory, movement and other roles.
• There are basically three major types of antidepressants. The different categories of antidepressants differ in terms of the neurotransmitters affected and the process involved in increasing these neurotransmitters.Selective Serotonin Reuptake Inhibitors (SSRI) - SSRIs (e.g. Zoloft, Lexapro, Prozac, Paxil, Celexa) are the most commonly prescribed antidepressants. SSRIs increase the amount of Serotonin by hindering the process involved in eliminating Serotonin (which is called Reuptake). After Serotonin is released from a nerve cell, the Reuptake process removes any Serotonin that is not used. Since the re-absorption of Serotonin is blocked, the level of Serotonin is increased.

  Tricyclic Antidepressants (TCA) - TCAs (e.g. Elavil, Nortriptyline) increase Seratonin, Norepinephrine and Dopamine by also blocking the Reuptake process (the removal of these neurotransmitters). Because of more adverse side effects, TCAs are prescribed less often than SSRIs.

  Monoamine Oxidase Inhibitors (MAOI) - MAOIs (e.g. Nardil, Marplan) inhibit the action of an enzyme called monoamine oxidase, which breaks down certain neurotransmitters. As a result, the amounts of Serotonin and Norepinephrine are increased. MAOIs are less prescribed than SSRIs and TCAs because of possible severe side effects and drug interactions. They are often used to treat depression that has not responded to other depression medications.

  There are other antidepressants that don't fall in any of the above categories, which affect a different combination of neurotransmitters. For example, Wellbutrin is a Dopamine and Norepinephrine Reuptake Inhibitors (DNRI), which increases both Dopamine and Norepinephrine by blocking the removal of these two neurotransmitters.

• Be patient when working with your doctor. It often takes several tries to find the right antidepressant. A doctor will select the most appropriate antidepressant based on your symptoms, the antidepressant's potential side effects, your medical conditions and any medications you're taking. Because of the many antidepressants on the market today, doctors have many options to choose from. So don't worry if the first antidepressant is not working well for you.
• Antidepressants are not a quick fix and take time to work. They often take several weeks (or more) before positive results are noticed. Because everyone's brain chemistry is different, antidepressants will affect individuals differently.
• Each antidepressant will have its own particular side effects. Many side effects are temporary and will go away once your body adjusts to the medication. Ask your doctor about the typical side effects, how long they may last, and when you should contact your doctor.
• Don't stop antidepressants too early. If you do, the chances of re-experiencing depression are increased. For most people, it is not necessary to take antidepressants for the rest of your life. Many individuals take antidepressants for six months to a year or more.
• The beliefs that antidepressants will change your personality or not allow you to feel are myths. If you truly need antidepressants, they should make you feel better and not worse. If you feel any of these concerns, talk to your doctor. You may be on the wrong medication or dose.
• Antidepressants are not habit forming (addictive). Often people cope with depression and other problems in less healthy ways such as using alcohol or illicit drugs. Taking depression medication is a healthier alternative with less negative consequences.
• Don't stop taking antidepressants without talking to your doctor first. For example, some SSRIs (e.g. Paxil) which are short-acting (stays in the body for a short period of time) may cause withdrawal like symptoms if they are stopped suddenly or dosage is reduced too quickly. If you stop or reduce certain SSRIs suddenly, you may experience SSRI Discontinuation Syndrome which is characterized by flu like symptoms such as nausea, chills, diarrhea, fatigue, headache, vomiting and dizziness. See a doctor if you start to experience these symptoms.
• There has been recent concern about using antidepressants with children. Short-term studies have shown that children using antidepressants have an increased risk of suicidal thinking and behavior in the first few months of treatment. Children should be closely monitored when beginning antidepressants or changing dosage. Likewise, adults who have depression (or other psychiatric conditions) and a history of suicidal behavior should also be closely watched.

Dr. Joanne Chao is a psychologist practicing in California and is the editor of Depression Help Resource, a website providing information about antidepressants, treatment options and depression related articles and resources.

Reviewed by athealth on February 8, 2014.

What is Tourette syndrome?

Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.

The early symptoms of TS are almost always noticed first in childhood, with the average onset between the ages of 7 and 10 years. TS occurs in people from all ethnic groups; males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics or transient tics of childhood. Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.

What are the symptoms?

Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocalizations might include repetitive throat-clearing, sniffing, or grunting sounds. Complex tics are distinct, coordinated patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, or twisting. Simple vocal tics may include throat-clearing, sniffing/snorting, grunting, or barking. More complex vocal tics include words or phrases. Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as punching oneself in the face or vocal tics including coprolalia (uttering swear words) or echolalia (repeating the words or phrases of others). Some tics are preceded by an urge or sensation in the affected muscle group, commonly called a premonitory urge. Some with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge or decrease the sensation.

Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics, for example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished. even suicide. It is important to learn to identify whether or not a client's reactions to and expressions of anger are a problem.

What is the course of TS?

Tics come and go over time, varying in type, frequency, location, and severity. The first symptoms usually occur in the head and neck area and may progress to include muscles of the trunk and extremities. Motor tics generally precede the development of vocal tics and simple tics often precede complex tics. Most patients experience peak tic severity before the mid-teen years with improvement for the majority of patients in the late teen years and early adulthood. Approximately 10 percent of those affected have a progressive or disabling course that lasts into adulthood.

Can people with TS control their tics?

Although the symptoms of TS are involuntary, some people can sometimes suppress, camouflage, or otherwise manage their tics in an effort to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed. Tics in response to an environmental trigger can appear to be voluntary or purposeful but are not.

What causes TS?

Although the cause of TS is unknown, current research points to abnormalities in certain brain regions (including the basal ganglia, frontal lobes, and cortex), the circuits that interconnect these regions, and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication among nerve cells. Given the often complex presentation of TS, the cause of the disorder is likely to be equally complex.

What disorders are associated with TS?

Many with TS experience additional neurobehavioral problems including inattention; hyperactivity and impulsivity (attention deficit hyperactivity disorder - ADHD) and related problems with reading, writing, and arithmetic; and obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors. For example, worries about dirt and germs may be associated with repetitive hand-washing, and concerns about bad things happening may be associated with ritualistic behaviors such as counting, repeating, or ordering and arranging. People with TS have also reported problems with depression or anxiety disorders, as well as other difficulties with living, that may or may not be directly related to TS. Given the range of potential complications, people with TS are best served by receiving medical care that provides a comprehensive treatment plan.

How is TS diagnosed?

TS is a diagnosis that doctors make after verifying that the patient has had both motor and vocal tics for at least 1 year. The existence of other neurological or psychiatric conditions[1] can also help doctors arrive at a diagnosis. Common tics are not often misdiagnosed by knowledgeable clinicians. But atypical symptoms or atypical presentation (for example, onset of symptoms in adulthood) may require specific specialty expertise for diagnosis. There are no blood or laboratory tests needed for diagnosis, but neuroimaging studies, such as magnetic resonance imaging (MRI), computerized tomography (CT), and electroencephalogram (EEG) scans, or certain blood tests may be used to rule out other conditions that might be confused with TS.

It is not uncommon for patients to obtain a formal diagnosis of TS only after symptoms have been present for some time. The reasons for this are many. For families and physicians unfamiliar with TS, mild and even moderate tic symptoms may be considered inconsequential, part of a developmental phase, or the result of another condition. For example, parents may think that eye blinking is related to vision problems or that sniffing is related to seasonal allergies. Many patients are self-diagnosed after they, their parents, other relatives, or friends read or hear about TS from others.

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[1] These include childhood-onset involuntary movement disorders such as dystonia, or psychiatric disorders characterized by repetitive behaviors/movements (for example, stereotypic behaviors in autism and compulsive behaviors in obsessive-compulsive disorder - OCD).

How is TS treated?

Because tic symptoms do not often cause impairment, the majority of people with TS require no medication for tic suppression. However, effective medications are available for those whose symptoms interfere with functioning. Neuroleptics are the most consistently useful medications for tic suppression; a number are available but some are more effective than others (for example, haloperidol and pimozide). Unfortunately, there is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms. In addition, all medications have side effects. Most neuroleptic side effects can be managed by initiating treatment slowly and reducing the dose when side effects occur. The most common side effects of neuroleptics include sedation, weight gain, and cognitive dulling. Neurological side effects such as tremor, dystonic reactions (twisting movements or postures), parkinsonian-like symptoms, and other dyskinetic (involuntary) movements are less common and are readily managed with dose reduction. Discontinuing neuroleptics after long-term use must be done slowly to avoid rebound increases in tics and withdrawal dyskinesias. One form of withdrawal dyskinesia called tardive dykinesia is a movement disorder distinct from TS that may result from the chronic use of neuroleptics. The risk of this side effect can be reduced by using lower doses of neuroleptics for shorter periods of time.

Other medications may also be useful for reducing tic severity, but most have not been as extensively studied or shown to be as consistently useful as neuroleptics. Additional medications with demonstrated efficacy include alpha-adrenergic agonists such as clonidine and guanfacine. These medications are used primarily for hypertension but are also used in the treatment of tics. The most common side effect from these medications that precludes their use is sedation.

Effective medications are also available to treat some of the associated neurobehavioral disorders that can occur in patients with TS. Recent research shows that stimulant medications such as methylphenidate and dextroamphetamine can lessen ADHD symptoms in people with TS without causing tics to become more severe. However, the product labeling for stimulants currently contraindicates the use of these drugs in children with tics/TS and those with a family history of tics. Scientists hope that future studies will include a thorough discussion of the risks and benefits of stimulants in those with TS or a family history of TS and will clarify this issue. For obsessive-compulsive symptoms that significantly disrupt daily functioning, the serotonin reuptake inhibitors (clomipramine, fluoxetine, fluvoxamine, paroxetine, and sertraline) have been proven effective in some patients.

Psychotherapy may also be helpful. Although psychological problems do not cause TS, such problems may result from TS. Psychotherapy can help the person with TS better cope with the disorder and deal with the secondary social and emotional problems that sometimes occur. More recently, specific behavioral treatments that include awareness training and competing response training, such as voluntarily moving in response to a premonitory urge, have shown effectiveness in small controlled trials. Larger and more definitive NIH-funded studies are underway.

Is TS inherited?

Evidence from twin and family studies suggests that TS is an inherited disorder. Although early family studies suggested an autosomal dominant mode of inheritance (an autosomal dominant disorder is one in which only one copy of the defective gene, inherited from one parent, is necessary to produce the disorder), more recent studies suggest that the pattern of inheritance is much more complex. Although there may be a few genes with substantial effects, it is also possible that many genes with smaller effects and environmental factors may play a role in the development of TS. Genetic studies also suggest that some forms of ADHD and OCD are genetically related to TS, but there is less evidence for a genetic relationship between TS and other neurobehavioral problems that commonly co-occur with TS. It is important for families to understand that genetic predisposition may not necessarily result in full-blown TS; instead, it may express itself as a milder tic disorder or as obsessive-compulsive behaviors. It is also possible that the gene-carrying offspring will not develop any TS symptoms.

The sex of the person also plays an important role in TS gene expression. At-risk males are more likely to have tics and at-risk females are more likely to have obsessive-compulsive symptoms.

People with TS may have genetic risks for other neurobehavioral disorders such as depression or substance abuse. Genetic counseling of individuals with TS should include a full review of all potentially hereditary conditions in the family.

What is the prognosis?

Although there is no cure for TS, the condition in many individuals improves in the late teens and early 20s. As a result, some may actually become symptom-free or no longer need medication for tic suppression. Although the disorder is generally lifelong and chronic, it is not a degenerative condition. Individuals with TS have a normal life expectancy. TS does not impair intelligence. Although tic symptoms tend to decrease with age, it is possible that neurobehavioral disorders such as depression, panic attacks, mood swings, and antisocial behaviors can persist and cause impairment in adult life.

What is the best educational setting for children with TS?

Although students with TS often function well in the regular classroom, ADHD, learning disabilities, obsessive-compulsive symptoms, and frequent tics can greatly interfere with academic performance or social adjustment. After a comprehensive assessment, students should be placed in an educational setting that meets their individual needs. Students may require tutoring, smaller or special classes, and in some cases special schools.

All students with TS need a tolerant and compassionate setting that both encourages them to work to their full potential and is flexible enough to accommodate their special needs. This setting may include a private study area, exams outside the regular classroom, or even oral exams when the child's symptoms interfere with his or her ability to write. Untimed testing reduces stress for students with TS.

What research is being done?

Within the Federal government, the leading supporter of research on TS and other neurological disorders is the National Institute of Neurological Disorders and Stroke (NINDS). The NINDS, a part of the National Institutes of Health (NIH), is responsible for supporting and conducting research on the brain and central nervous system.

NINDS sponsors research on TS both in its laboratories at the NIH and through grants to major medical institutions across the country. The National Institute of Mental Health, the National Center for Research Resources, the National Institute of Child Health and Human Development, the National Institute on Drug Abuse, and the National Institute on Deafness and Other Communication Disorders also support research of relevance to TS. And another component of the Department of Health and Human Services, the Centers for Disease Control and Prevention, funds professional education programs as well as TS research.

Knowledge about TS comes from studies across a number of medical and scientific disciplines, including genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication), epidemiology, neurophysiology, neuroimmunology, and descriptive/diagnostic clinical science.

Genetic studies. Currently, NIH-funded investigators are conducting a variety of large-scale genetic studies. Rapid advances in the technology of gene finding will allow for genome-wide screening approaches in TS, and finding a gene or genes for TS would be a major step toward understanding genetic risk factors. In addition, understanding the genetics of TS genes will strengthen clinical diagnosis, improve genetic counseling, lead to the clarification of pathophysiology, and provide clues for more effective therapies.

Neuroimaging studies. Within the past 5 years, advances in imaging technology and an increase in trained investigators have led to an increasing use of novel and powerful techniques to identify brain regions, circuitry, and neurochemical factors important in TS and related conditions.

Neuropathology. Within the past 5 years, there has been an increase in the number and quality of donated postmortem brains from TS patients available for research purposes. This increase, coupled with advances in neuropathological techniques, has led to initial findings with implications for neuroimaging studies and animal models of TS.

Clinical trials. A number of clinical trials in TS have recently been completed or are currently underway. These include studies of stimulant treatment of ADHD in TS and behavioral treatments for reducing tic severity in children and adults. Smaller trials of novel approaches to treatment such as dopamine agonist and GABAergic medications also show promise.

Epidemiology and clinical science. Careful epidemiological studies now estimate the prevalence of TS to be substantially higher than previously thought with a wider range of clinical severity. Furthermore, clinical studies are providing new findings regarding TS and co-existing conditions. These include subtyping studies of TS and OCD, an examination of the link between ADHD and learning problems in children with TS, a new appreciation of sensory tics, and the role of co-existing disorders in rage attacks. One of the most important and controversial areas of TS science involves the relationship between TS and autoimmune brain injury associated with group A beta-hemolytic streptococcal infections or other infectious processes. There are a number of epidemiological and clinical investigations currently underway in this intriguing area.

Source: National Institute of Neurological Disorders and Stroke
NIH Publication No. 05-2163

Reviewed by athealth on February 8, 2014.

What Is A Toxic Relationship, and Could You be in One?

No important, ongoing relationship is totally without friction. In all good families, marriages and friendships, some degree of conflict, disagreement and disappointment is the rule. One of the hallmarks of emotional maturity is to be willing and able to really stick with important others during difficult times. However, it's fair to say that some relationships are toxic. Regardless of attempts to work through problems, the friction and conflict are so severe that one or more people in the relationship continue to be hurt. Such a relationship leaves at least one person stranded in an emotional desert.

The awareness that a relationship may, in fact, be destructive can be obscured by blinders of hopefulness and denial. Most people do not want to see or believe that their parents, spouse, children or friends are harmful to them. This kind of denial may last a lifetime, or it may give way to an increasingly clear but painful awareness that the relationship is not healthy. Partial denial, combined with partial awareness, "Oh my God... I can't believe this!" is not uncommon. The initial awareness is sometimes followed by the desperate attempt to fix things or to slip back into denial.

When there is no fix, and the reality can no longer be denied, a second source of despair can set in: loss. It is both a loss of the other person as a meaningful source of love or support, and the loss of an ideal. The ideal may be a highly valued belief or hope that parents can be loving, that a spouse can be faithful, or that a friend can be trusted. The dawning reality of an unhealthy relationship can puncture our ideals and hurt like hell.

Concerned friends may offer "supportive" statements, such as "Well, he wasn't good for you. It's better that you're no longer in that relationship." These observations may be true "objectively," but that doesn't neutralize the pain of lost hope.

Painful relationships develop for many reasons. Sadly, there are times when people hurt people out of meanness; they intentionally use, abuse and damage the other person. At the same time, many harmful, toxic interactions have nothing to do with the desire to cause pain. The troubles may be largely due to a person's own emotional woundedness, stressful lifestyle, mental illness or addiction to alcohol.

Toxic relationships need not imply that the people involved are bad. Rather than a matter of people being good, bad, right or wrong, it's more often a lack of fit. One person's style simply doesn't mesh with the other. Or maybe there was a good fit or "good chemistry" at some point, but with time, the people have grown and changed. The relationship isn't the same. This is not a crime. It's just one aspect of human nature, and blaming has no helpful role, but it can be toxic all the same.

Adapted from Survivors: Stories and Strategies to Heal the Hurt
Dr. John Preston
Available at online and local bookstores or directly from Impact Publishers, Inc.
PO Box 6016
Atascadero, CA 93423-6016
http://www.bibliotherapy.com
Phone 1-800-246-7228.

Reviewed by athealth on February 8, 2014.