Parenting Children with Disabilities: Discover the Gift that is Yours

Research about parenting children with disabilities has often focused on the negative aspects, such as family disruption and stress. But there's evidence that researchers have overstated the negatives and overlooked the positives. While families with disabled children do experience challenges, new research suggests that when they have good support, they're as vibrant and healthy as families without disabled children.^6,12

Researchers are increasingly looking for and finding the joys, learning, and growth experienced by families with a disabled child.⁸ As researchers study families that have adapted well to this challenging situation, they're communicating a more positive view and providing more resources for families to adjust and stay strong.^8,12

To be a mother or father is a sacred calling, full of challenges and joys. Every child is unique and special, and every child needs a mother and father who will love, teach and encourage. As a mother or father of a child with a disability, recognize the great challenge and opportunity that is before you—and discover the wonderful gift that is yours.

Defining "Disability"

The Institute on Disability and Rehabilitation Research defines eight categories of disability:⁶

• Mental Retardation: Significantly below average intellectual functioning (below 70-75 IQ). May be mild, moderate or severe.

• Physical Disabilities: Physical limitations that interfere with school attendance or learning to the degree that special services, equipment, training, or facilities are required. Does not include children whose primary disability is visual or hearing impairment.

• Communicative Disorders: Speech and language impairment.

• Emotional/Behavioral Disorders: Behaviors severe enough to diminish educational performance.

• Giftedness: High capability in intellectual, creative, artistic, or leadership capacity or in specific academic fields to the extent that the abilities can't be fully developed by ordinary school services.

• Hearing Impairments/Deafness: In hearing impairment a person can hear enough to process information from sound, usually with the help of aids. In deafness the person has little hearing even with aids and can't use hearing to gain information.

• Visual Impairment/Blindness: In visual impairment a person can read large-print books or read with the help of magnifying devices. In blindness, vision is so impaired that a person must learn to read Braille or use audiotapes and records.

• Learning disabilities: Normal intelligence but substantial academic difficulties, creating significant discrepancy between expectations for performance and actual performance. Not a single condition. May occur with behavioral problems.⁶

Grieving: A Natural Process

Every parent hopes to have a healthy child. Finding out a child is disabled can be excruciating. Parents should not feel guilty when they feel this deep pain and disappointment. A period of grieving is natural as a parent learns to accept and cope. According to Hamner and Turner, grieving is "the process by which an individual can separate from a significant lost dream".⁶ As parents come to accept their child's limitations, they need to understand and accept their own limitations as well.⁶

Parents may experience several forms of grieving, all in their own individual way:⁶

• Denial: Parents might deny for a time that a disability is permanent or minimize its severity. Denial buys time to gain the internal strength and external support needed to cope.

• Anxiety: Worry, apprehension, and fear are a normal response to this situation. These feelings help parents restructure attitudes and mobilize them to action.

• Guilt: Feelings of guilt usually take three forms: (1) feeling one caused the disability; (2) feeling the disability is punishment for some misdeed committed in the past; or (3) feeling generalized guilt simply because the disability exists. Parents usually can't will these feelings away. They diminish over time as parents realize they are not responsible for the disability.

• Depression: Anger turned inward causes depression. If parents recruit good support, their anger will lessen and the depression will lift.

• Anger: Most people's internal sense of justice is offended when their innocent child is born with a disability. The anger that sometimes follows can be frightening. It can show up as aggression, overprotection, or over-punitiveness toward the child.⁶ Parents with severe anger should seek help.

Blessings of Parenting a Child with Special Needs

Parents report many challenges with a disabled child, with an acute emotional adjustment when they first discover the disability. But over time many come to believe their families are blessed because of their special child. Husbands and wives say their marriage relationship is strengthened, and many families say they're closer and have become more compassionate, tolerant, sympathetic, flexible, and selfless.¹² According to Hamner & Turner, "Each disability brings its special challenges and rewards to parents".⁶

With time, families can move past merely accepting their situation and begin to appreciate its positive aspects.¹² When they share the positives with other families, they can strengthen and encourage themselves and others.

Attributes Successful Families Share in Common

Scientists and therapists are eager to find out why some families cope well with severe stress while others fall apart at the smallest difficulty. They're discovering that those who cope best have several characteristics in common. They recommend the following based on their findings:

• Keep your marriage strong. The sudden news that your child has a limitation is traumatic for both of you. Now is the time to come together, not come apart. Share your feelings and brainstorm solutions. Life's challenges are more bearable when a loving husband and wife work through them together. Many parents report their relationship with their spouse as their greatest resource. The Family: A Proclamation to the World states that a "husband and wife have a solemn responsibility to love and care for each other . . . to help one another as equal partners" in their sacred responsibilities as mother and father (¶ 6).¹³A strong marital bond also helps children cope. According to the Proclamation, "Children are entitled to be reared by a father and mother who honor marital vows with complete fidelity".¹³ With the foundation of a loving relationship and stable family life, parents are better equipped to help all their children.⁵

• Recognize the particular strain on Mom. Research consistently shows that mothers are the primary caregivers in the home.⁸ The demands are especially great on a mother caring for a child with a physical or mental disability. Marital satisfaction is a strong predictor of how well she will cope with the situation.⁸ The father's support, both in action and in words, is critical to her ability to function well as an individual, a wife, and a mother.⁶ While mothers primarily nurture children and fathers primarily provide for and protect their families, husband and wife need to "help one another as equal partners" in their sacred parental responsibilities.¹³

• Adapt roles as needed. No two families are alike. The Proclamation reminds us that "disability, death, or other circumstances may necessitate individual adaptation" (¶ 7).¹³ Families should creatively work together to adapt roles, alter schedules, or change work responsibilities to their unique circumstances.

• Stay positive and have realistic expectations. Parents who report a positive family experience also report a positive view of their child with a disability. They focus on their child's strengths, not on their limitations. They recognize their child's potential for growth and encourage his or her development. One study found that families coping well with a special needs child maintain a positive attitude, have realistic expectations of their child, and are less preoccupied with negative thoughts.¹⁴ The following list of principles can help parents maintain a positive attitude and realistic expectations.

• Your child can't help it. Remind yourself that the problems your child is experiencing come from a special need he or she can't control, not from a personality trait.

• Anxiety makes things worse. Recognize overanxiety and deal with it. It's natural to be concerned about the future of your child, but excessive anxiety can get in the way of making good decisions.

• Your child will grow up at his or her own rate. It isn't helpful to compare one child with another or to pressure a child to keep up with his peers. Parents must recognize that their child will grow and learn at his own rate. Goals should be realistic. If expectations are too high, you and your child will be disappointed and lose motivation.

• Help your child maintain self-confidence. Accept your child as she is. Allow her to feel unconditionally loved because of who she is—not what she achieves.

• Finding the root cause won't change the situation. Parents often want desperately to know what caused their child's disability. While this information can be helpful, the present and future are more important. If your priority is to accept your child and her needs rather than understand what went wrong, you'll be better able to provide educational and emotional support.

• Avoid negative thinking. It takes energy to stay in negative thinking about a difficult situation. Use your energy for positive action.

• It's not your fault. At times you may feel you're to blame for your child's difficulty. You might think you've let him down in some way. Others may reinforce these feelings by making insensitive comments about how you might manage your child differently. Have confidence that you understand your child best. No one is to blame for his limitations.

• Celebrate your child's strengths as they emerge. Take pride in your child's strengths and positive characteristics. Emphasize what she can do rather than what she can't. Encouraging her helps her recognize her abilities and develop healthy self-esteem.¹¹

• Turn to your religious faith for strength. The Proclamation teaches that "successful marriages and families are established and maintained on principles of faith, prayer, repentance, forgiveness, respect, love, compassion, work and wholesome recreational activities".¹³. According to Dollahite's review of the literature, "religious beliefs, practices, and communities can provide meaningful and helpful resources for [parents] to help them become or remain committed to providing increased care for the child".² Many families report that their faith in God gives them hope during times of grief and sorrow.² They also say they receive a gift of strength as they encounter life's daily challenges. One study of fathers found that belief in a divine plan helped them find meaning in their situation, which in turn helped them get through and sometimes rise above discouraging challenges.² Many parents see their child as a divine son or daughter of God and feel it a blessing to be entrusted with a special needs child.¹⁰ These parents often report feeling that their child was sent to them for a special purpose. Some believe that in the afterlife their child will receive a perfect body and mind. Parents can draw hope and strength from knowing that theirs is a "sacred duty to rear their children in love and righteousness, to provide for their physical and spiritual needs, to teach them to love and serve one another, to observe the commandments of God and to be law-abiding citizens wherever they live".¹³

• Actively seek support. You don't have to face a challenging parenting situation alone. The Proclamation teaches that "extended families should lend support when needed" (¶ 7). But you have to ask. And you might need to educate relatives, friends, or neighbors about your child's disability. Many are anxious to help and only need you to teach them how. Research has found that when parents let family, friends, and professionals help, they have a much easier time adapting to the stress of having a child with a disability.⁷ You also don't have to reinvent the wheel. Many programs and services can help. One study showed that families were healthier when they actively sought social support, information, and professional help instead of waiting for it to come to them.⁸ Be sure you talk to doctors, schools counselors, and religious leaders. Let neighbors or friends who've experienced what you're going through recommend a service, website, or professional. Support is out there, not only for your child, but also for you. The greater the social support, the lower the stress on your family.⁶ Parents who report having a positive parenting experience make contact with other parents of children with similar difficulties. According to Peck, "a support group may help dissolve any feelings of isolation; parents will discover others who share similar worries and understand their feelings".¹¹

• Increase understanding and love among siblings. Having a sibling with a disability can present unique challenges for children. Attention and energy can sometimes become too focused on the special needs child. Be sensitive to needs of your children who are siblings to a special needs child. Allow them to talk freely with you about their feelings.One study found that children in this situation struggled most with the day-to-day stressors like the inappropriate behavior of their special needs brother or sister.⁹ The Proclamation says that "parents have a sacred duty to . . . teach [their children] to love and serve one another".¹³ Parents should help all their children understand a sibling's disability and teach them how to help. Discuss ways to handle difficult situations. Encourage them. Praise them when they're kind and helpful. And don't forget to set limits for your children—with disabilities and without.

• Encourage self-determined behavior and resiliency. Self-determination is the ability of an individual to make his own choices based on knowledge, beliefs, values and skills. Resiliency is the ability to hold up under stress, overcome adversity, and gain better self-mastery and self-esteem (Hamner & Turner, 2001, p. 363). Parents can do two important things to help each child become more self-determined and more resilient – "modeling" and "interacting" (Field & Hoffman, 1999, pp. 40-41).(1) Modeling: Children tend to watch their parents and follow their example. They observe how you react and adapt to stressful situations and will likely act similarly. They recognize when you speak out for their needs to schools and doctors. They notice when you problem solve and are willing to seek information. Parents "can serve as important role models for their children as they demonstrate positive adaptation to life's challenges".⁴ Evaluate the example you're setting for your children. Make sure your attitude and behavior are setting a strong, resilient example.(2) Interacting: You understand and know your children's strengths and weaknesses better than anyone. Use that understanding to create an individualized learning environment.¹¹ It is very difficult to learn a new skill unless you practice. Children can practice self-determined and resilient behavior as they interact with family members on a daily basis. You can provide positive learning opportunities for your child to:
  
  • make choices
  • express opinions
  • explore potential options
  • take appropriate risks
  • learn from their consequences⁴

You can also:

• allow for private time to develop autonomy
• give honest positive feedback
• provide opportunities to develop social skills (i.e. communication, negotiation, and conflict resolution)
• help build self-awareness and self-esteem through empathetic listening⁴

• Be an advocate. Studies show that parents who report coping well with their special needs child also report advocating for their child. Advocating means speaking up with teachers, doctors, and specialists to make sure your special needs child gets good care. Learn all you can about your child's disability. Research the programs and services available to you. Make sure you understand what's happening with your child so you can evaluate what doctors, specialists, or teachers tell you. If you have negative experiences with these professionals, know your options and seek out alternatives.Become familiar with your rights and responsibilities under the Education for the Handicapped Act (Public Law 101-476), the Individuals with Disabilities Education Act (IDEA) (Public Law 101-476), and the IDEA Amendments of 1997 (Public Law 105-17). Parental rights include the following:

1. 1. Children with special needs are entitled to a free, appropriate public education in the least restrictive school setting possible.
   2. Parents will be notified when the school wants to conduct an evaluation of their child for potential special education, wants to change their child's education placement, or refuses an evaluation or a change in placement.
   3. Parents may request an evaluation if they think their child may need special education services.
   4. Parents should be asked by their school to provide "informed consent."
   5. If parents disagree with the outcome of the school's evaluation, they can obtain an independent evaluation.
   6. Parents may have their child tested for special education needs in the language he or she knows best.
   7. Parents may review all of their child's records and obtain copies of these records.
   8. Parents must be fully informed by the school about all of the rights provided to them and their child under the law.
   9. Parents may participate in the development of their child's Individualized Education Program (IEP) or, in the case of a child younger than four years old, the development of an Individualized Family Service Plan (IFSP).
   10. Parents may participate in all IEP or IFSP team decisions, including placement.
   11. Parents may request an IEP or IFSP meeting at any time.
   12. Parents may request a due process hearing or voluntary mediation to solve problems with the school.
   13. Parents should be kept informed about their child's process just as often as parents with children without special needs.(http://eric.ed.gov/).

Make protection of your child's rights a priority. The Education Resources Information Center provides a parent brochure on the Rights and Responsibilities of Parents of Children with Disabilities. Below are suggestions to protect your child's rights.

1. 1. Develop a partnership with the school and share relevant information about your child's education and development.
   2. Ask for clarification of any aspect of the program that is unclear to you.
   3. Make sure you understand the program specified in the IEP or IFSP before agreeing to it or signing any forms.
   4. Discuss with your child's teacher how your child can be included in regular school activities.
   5. Monitor your child's progress and periodically ask the school for a report.
   6. Discuss with the school any problems that occur with your child's assessment, placement, or educational program.
   7. Keep records.
   8. Join a parent organization. See http://eric.ed.gov/

Additional Reading

Berk, L. E. (2001). Awakening children's minds. New York: Oxford University Press, Inc.

Carroll, J. S., Robinson, W. D., Marshall, E. S., Callister, L. C., Olsen, S. F., Dyches, T. T., et al. (2000). The family crucibles of illness, disability, death, and other losses. In D. Dollahite (Ed.), Strengthening our families: An in-depth look at the proclamation on the family (pp. 278-292). Salt Lake City, UT: Bookcraft.

Hamner, T. J., & Turner, P. H., (2001). Parenting in contemporary society. Needham Heights, MA: Allyn & Bacon.

http://www.nichcy.org/ (Website for The National Information Center for Children and Youth with Disabilities. This site provides information on disabilities and health-related issues; national/state organizations and resources; special education rights and programs; parent material and more).

Written by Christina Jackman, Research Assistant, edited by Stephen F. Duncan, Professor, School of Family Life, Brigham Young University.

References

1. Dollahite, D. C. (2003). Fathering for eternity: Generative spirituality in Latter-day Saint fathers of children with special needs. Review of Religious Research, 44(3), 1-18.
2. Dollahite, D. C., Marks, L. D., & Olson, M. M. (1998). Faithful fathering trying times: Religious beliefs and practices of Latter-day Saint fathers of children with special needs. The Journal of Men's Studies, 7, 71-93.
3. Dunst, C. J., Hamby, D., Trivette, C. M., Raab, M., & Bruder, M. B. (2000). Everyday family and community life and children's naturally occurring learning opportunities. Journal of Early Intervention, 23, 151-164.
4. Field, S., & Hoffman, A. (1999). The importance of family involvement for promoting self-determination in adolescents with autism and other developmental disabilities. Focus on Autism and other Developmental Disabilities, 14, 1, 36-41.
5. Gavidia-Payne, S., & Stoneman, Z. (1997). Family predictors of maternal and paternal involvement in programs for young children with disabilities. Child Development, 68, 701-717.
6. Hamner, T. J., & Turner, P. H., (2001). Parenting in contemporary society. Needham Heights, MA: Allyn & Bacon.
7. Krauss, M. W. (1993). Child-related and parenting stress: Similarities and differences between mothers and fathers of children with disabilities. American Journal of Mental Retardation, 97, 393-404.
8. Li-Tsang, C. W., Yau, M. K., & Yuen, H. K. (2001). Success in parenting children with developmental disabilities: Some characteristics, attitudes and adaptive coping skills. The British Journal of Developmental Disabilities, 47, 61-71.
9. Olsen, S. F., Marshall, E. S., Chipman, S., Bingham, J., Buchanan, M., Mandleco, B. L. (1999). Daily stressors and coping responses of siblings of children with special needs. Contemporary Perspectives on Family Research, 1, 311-328.
10. Olson, M. M., Dollahite, D. C., & White, M. B. (2002). Involved fathering of children with special needs: Relationships and religion as resources. Journal of Religion, Disability & Health, 6, 47-73.
11. Peck, D. (2002). What's the problem? A guide to running a problem-solving workshop for parents/carers of children with language and communication difficulties. Support for Learning, 17, 39-43.
12. Sandler, A. G., & Mistretta, L. A. (1998). Positive adaptation in parents of adults with disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 33, 123-130.
13. The First Presidency and Council of the Twelve Apostles of The Church of Jesus Christ of Latter-day Saints. (1995, November). The family: A proclamation to the world. Ensign, 102.
14. Yau, M. K., & Li-Tsang, C. W. P. (1999). Adjustment and adaptation in parents of children with developmental disability in two-parent families: A review of the characteristics and attributes. The British Journal of Developmental Disabilities, 45, 38-51.

Research about parenting children with disabilities has often focused on the negative aspects, such as family disruption and stress. But there's evidence that researchers have overstated the negatives and overlooked the positives. While families with disabled children do experience challenges, new research suggests that when they have good support, they're as vibrant and healthy as families without disabled children.^6,12

Researchers are increasingly looking for and finding the joys, learning, and growth experienced by families with a disabled child.⁸ As researchers study families that have adapted well to this challenging situation, they're communicating a more positive view and providing more resources for families to adjust and stay strong.^8,12

To be a mother or father is a sacred calling, full of challenges and joys. Every child is unique and special, and every child needs a mother and father who will love, teach and encourage. As a mother or father of a child with a disability, recognize the great challenge and opportunity that is before you—and discover the wonderful gift that is yours.

Defining "Disability"

The Institute on Disability and Rehabilitation Research defines eight categories of disability:⁶

• Mental Retardation: Significantly below average intellectual functioning (below 70-75 IQ). May be mild, moderate or severe.

• Physical Disabilities: Physical limitations that interfere with school attendance or learning to the degree that special services, equipment, training, or facilities are required. Does not include children whose primary disability is visual or hearing impairment.

• Communicative Disorders: Speech and language impairment.

• Emotional/Behavioral Disorders: Behaviors severe enough to diminish educational performance.

• Giftedness: High capability in intellectual, creative, artistic, or leadership capacity or in specific academic fields to the extent that the abilities can't be fully developed by ordinary school services.

• Hearing Impairments/Deafness: In hearing impairment a person can hear enough to process information from sound, usually with the help of aids. In deafness the person has little hearing even with aids and can't use hearing to gain information.

• Visual Impairment/Blindness: In visual impairment a person can read large-print books or read with the help of magnifying devices. In blindness, vision is so impaired that a person must learn to read Braille or use audiotapes and records.

• Learning disabilities: Normal intelligence but substantial academic difficulties, creating significant discrepancy between expectations for performance and actual performance. Not a single condition. May occur with behavioral problems.⁶

Grieving: A Natural Process

Every parent hopes to have a healthy child. Finding out a child is disabled can be excruciating. Parents should not feel guilty when they feel this deep pain and disappointment. A period of grieving is natural as a parent learns to accept and cope. According to Hamner and Turner, grieving is "the process by which an individual can separate from a significant lost dream".⁶ As parents come to accept their child's limitations, they need to understand and accept their own limitations as well.⁶

Parents may experience several forms of grieving, all in their own individual way:⁶

• Denial: Parents might deny for a time that a disability is permanent or minimize its severity. Denial buys time to gain the internal strength and external support needed to cope.

• Anxiety: Worry, apprehension, and fear are a normal response to this situation. These feelings help parents restructure attitudes and mobilize them to action.

• Guilt: Feelings of guilt usually take three forms: (1) feeling one caused the disability; (2) feeling the disability is punishment for some misdeed committed in the past; or (3) feeling generalized guilt simply because the disability exists. Parents usually can't will these feelings away. They diminish over time as parents realize they are not responsible for the disability.

• Depression: Anger turned inward causes depression. If parents recruit good support, their anger will lessen and the depression will lift.

• Anger: Most people's internal sense of justice is offended when their innocent child is born with a disability. The anger that sometimes follows can be frightening. It can show up as aggression, overprotection, or over-punitiveness toward the child.⁶ Parents with severe anger should seek help.

Blessings of Parenting a Child with Special Needs

Parents report many challenges with a disabled child, with an acute emotional adjustment when they first discover the disability. But over time many come to believe their families are blessed because of their special child. Husbands and wives say their marriage relationship is strengthened, and many families say they're closer and have become more compassionate, tolerant, sympathetic, flexible, and selfless.¹² According to Hamner & Turner, "Each disability brings its special challenges and rewards to parents".⁶

With time, families can move past merely accepting their situation and begin to appreciate its positive aspects.¹² When they share the positives with other families, they can strengthen and encourage themselves and others.

Attributes Successful Families Share in Common

Scientists and therapists are eager to find out why some families cope well with severe stress while others fall apart at the smallest difficulty. They're discovering that those who cope best have several characteristics in common. They recommend the following based on their findings:

• Keep your marriage strong. The sudden news that your child has a limitation is traumatic for both of you. Now is the time to come together, not come apart. Share your feelings and brainstorm solutions. Life's challenges are more bearable when a loving husband and wife work through them together. Many parents report their relationship with their spouse as their greatest resource. The Family: A Proclamation to the World states that a "husband and wife have a solemn responsibility to love and care for each other . . . to help one another as equal partners" in their sacred responsibilities as mother and father (¶ 6).¹³A strong marital bond also helps children cope. According to the Proclamation, "Children are entitled to be reared by a father and mother who honor marital vows with complete fidelity".¹³ With the foundation of a loving relationship and stable family life, parents are better equipped to help all their children.⁵

• Recognize the particular strain on Mom. Research consistently shows that mothers are the primary caregivers in the home.⁸ The demands are especially great on a mother caring for a child with a physical or mental disability. Marital satisfaction is a strong predictor of how well she will cope with the situation.⁸ The father's support, both in action and in words, is critical to her ability to function well as an individual, a wife, and a mother.⁶ While mothers primarily nurture children and fathers primarily provide for and protect their families, husband and wife need to "help one another as equal partners" in their sacred parental responsibilities.¹³

• Adapt roles as needed. No two families are alike. The Proclamation reminds us that "disability, death, or other circumstances may necessitate individual adaptation" (¶ 7).¹³ Families should creatively work together to adapt roles, alter schedules, or change work responsibilities to their unique circumstances.

• Stay positive and have realistic expectations. Parents who report a positive family experience also report a positive view of their child with a disability. They focus on their child's strengths, not on their limitations. They recognize their child's potential for growth and encourage his or her development. One study found that families coping well with a special needs child maintain a positive attitude, have realistic expectations of their child, and are less preoccupied with negative thoughts.¹⁴ The following list of principles can help parents maintain a positive attitude and realistic expectations.

1. 1. Your child can't help it. Remind yourself that the problems your child is experiencing come from a special need he or she can't control, not from a personality trait.
   2. Anxiety makes things worse. Recognize overanxiety and deal with it. It's natural to be concerned about the future of your child, but excessive anxiety can get in the way of making good decisions.
   3. Your child will grow up at his or her own rate. It isn't helpful to compare one child with another or to pressure a child to keep up with his peers. Parents must recognize that their child will grow and learn at his own rate. Goals should be realistic. If expectations are too high, you and your child will be disappointed and lose motivation.
   4. Help your child maintain self-confidence. Accept your child as she is. Allow her to feel unconditionally loved because of who she is—not what she achieves.
   5. Finding the root cause won't change the situation. Parents often want desperately to know what caused their child's disability. While this information can be helpful, the present and future are more important. If your priority is to accept your child and her needs rather than understand what went wrong, you'll be better able to provide educational and emotional support.
   6. Avoid negative thinking. It takes energy to stay in negative thinking about a difficult situation. Use your energy for positive action.
   7. It's not your fault. At times you may feel you're to blame for your child's difficulty. You might think you've let him down in some way. Others may reinforce these feelings by making insensitive comments about how you might manage your child differently. Have confidence that you understand your child best. No one is to blame for his limitations.
   8. Celebrate your child's strengths as they emerge. Take pride in your child's strengths and positive characteristics. Emphasize what she can do rather than what she can't. Encouraging her helps her recognize her abilities and develop healthy self-esteem.¹¹

• Turn to your religious faith for strength. The Proclamation teaches that "successful marriages and families are established and maintained on principles of faith, prayer, repentance, forgiveness, respect, love, compassion, work and wholesome recreational activities".¹³. According to Dollahite's review of the literature, "religious beliefs, practices, and communities can provide meaningful and helpful resources for [parents] to help them become or remain committed to providing increased care for the child".² Many families report that their faith in God gives them hope during times of grief and sorrow.² They also say they receive a gift of strength as they encounter life's daily challenges. One study of fathers found that belief in a divine plan helped them find meaning in their situation, which in turn helped them get through and sometimes rise above discouraging challenges.² Many parents see their child as a divine son or daughter of God and feel it a blessing to be entrusted with a special needs child.¹⁰ These parents often report feeling that their child was sent to them for a special purpose. Some believe that in the afterlife their child will receive a perfect body and mind. Parents can draw hope and strength from knowing that theirs is a "sacred duty to rear their children in love and righteousness, to provide for their physical and spiritual needs, to teach them to love and serve one another, to observe the commandments of God and to be law-abiding citizens wherever they live".¹³

• Actively seek support. You don't have to face a challenging parenting situation alone. The Proclamation teaches that "extended families should lend support when needed" (¶ 7). But you have to ask. And you might need to educate relatives, friends, or neighbors about your child's disability. Many are anxious to help and only need you to teach them how. Research has found that when parents let family, friends, and professionals help, they have a much easier time adapting to the stress of having a child with a disability.⁷ You also don't have to reinvent the wheel. Many programs and services can help. One study showed that families were healthier when they actively sought social support, information, and professional help instead of waiting for it to come to them.⁸ Be sure you talk to doctors, schools counselors, and religious leaders. Let neighbors or friends who've experienced what you're going through recommend a service, website, or professional. Support is out there, not only for your child, but also for you. The greater the social support, the lower the stress on your family.⁶ Parents who report having a positive parenting experience make contact with other parents of children with similar difficulties. According to Peck, "a support group may help dissolve any feelings of isolation; parents will discover others who share similar worries and understand their feelings".¹¹

• Increase understanding and love among siblings. Having a sibling with a disability can present unique challenges for children. Attention and energy can sometimes become too focused on the special needs child. Be sensitive to needs of your children who are siblings to a special needs child. Allow them to talk freely with you about their feelings.One study found that children in this situation struggled most with the day-to-day stressors like the inappropriate behavior of their special needs brother or sister.⁹ The Proclamation says that "parents have a sacred duty to . . . teach [their children] to love and serve one another".¹³ Parents should help all their children understand a sibling's disability and teach them how to help. Discuss ways to handle difficult situations. Encourage them. Praise them when they're kind and helpful. And don't forget to set limits for your children—with disabilities and without.

• Encourage self-determined behavior and resiliency. Self-determination is the ability of an individual to make his own choices based on knowledge, beliefs, values and skills. Resiliency is the ability to hold up under stress, overcome adversity, and gain better self-mastery and self-esteem (Hamner & Turner, 2001, p. 363). Parents can do two important things to help each child become more self-determined and more resilient – "modeling" and "interacting" (Field & Hoffman, 1999, pp. 40-41).(1) Modeling: Children tend to watch their parents and follow their example. They observe how you react and adapt to stressful situations and will likely act similarly. They recognize when you speak out for their needs to schools and doctors. They notice when you problem solve and are willing to seek information. Parents "can serve as important role models for their children as they demonstrate positive adaptation to life's challenges".⁴ Evaluate the example you're setting for your children. Make sure your attitude and behavior are setting a strong, resilient example.(2) Interacting: You understand and know your children's strengths and weaknesses better than anyone. Use that understanding to create an individualized learning environment.¹¹ It is very difficult to learn a new skill unless you practice. Children can practice self-determined and resilient behavior as they interact with family members on a daily basis. You can provide positive learning opportunities for your child to:
  
  • make choices
  • express opinions
  • explore potential options
  • take appropriate risks
  • learn from their consequences⁴

You can also:

• allow for private time to develop autonomy
• give honest positive feedback
• provide opportunities to develop social skills (i.e. communication, negotiation, and conflict resolution)
• help build self-awareness and self-esteem through empathetic listening⁴

• Be an advocate. Studies show that parents who report coping well with their special needs child also report advocating for their child. Advocating means speaking up with teachers, doctors, and specialists to make sure your special needs child gets good care. Learn all you can about your child's disability. Research the programs and services available to you. Make sure you understand what's happening with your child so you can evaluate what doctors, specialists, or teachers tell you. If you have negative experiences with these professionals, know your options and seek out alternatives.Become familiar with your rights and responsibilities under the Education for the Handicapped Act (Public Law 101-476), the Individuals with Disabilities Education Act (IDEA) (Public Law 101-476), and the IDEA Amendments of 1997 (Public Law 105-17). Parental rights include the following:

1. 1. Children with special needs are entitled to a free, appropriate public education in the least restrictive school setting possible.
   2. Parents will be notified when the school wants to conduct an evaluation of their child for potential special education, wants to change their child's education placement, or refuses an evaluation or a change in placement.
   3. Parents may request an evaluation if they think their child may need special education services.
   4. Parents should be asked by their school to provide "informed consent."
   5. If parents disagree with the outcome of the school's evaluation, they can obtain an independent evaluation.
   6. Parents may have their child tested for special education needs in the language he or she knows best.
   7. Parents may review all of their child's records and obtain copies of these records.
   8. Parents must be fully informed by the school about all of the rights provided to them and their child under the law.
   9. Parents may participate in the development of their child's Individualized Education Program (IEP) or, in the case of a child younger than four years old, the development of an Individualized Family Service Plan (IFSP).
   10. Parents may participate in all IEP or IFSP team decisions, including placement.
   11. Parents may request an IEP or IFSP meeting at any time.
   12. Parents may request a due process hearing or voluntary mediation to solve problems with the school.
   13. Parents should be kept informed about their child's process just as often as parents with children without special needs.(http://eric.ed.gov/).

Make protection of your child's rights a priority. The Education Resources Information Center provides a parent brochure on the Rights and Responsibilities of Parents of Children with Disabilities. Below are suggestions to protect your child's rights.

1. 1. Develop a partnership with the school and share relevant information about your child's education and development.
   2. Ask for clarification of any aspect of the program that is unclear to you.
   3. Make sure you understand the program specified in the IEP or IFSP before agreeing to it or signing any forms.
   4. Discuss with your child's teacher how your child can be included in regular school activities.
   5. Monitor your child's progress and periodically ask the school for a report.
   6. Discuss with the school any problems that occur with your child's assessment, placement, or educational program.
   7. Keep records.
   8. Join a parent organization. See http://eric.ed.gov/

Additional Reading

Berk, L. E. (2001). Awakening children's minds. New York: Oxford University Press, Inc.

Carroll, J. S., Robinson, W. D., Marshall, E. S., Callister, L. C., Olsen, S. F., Dyches, T. T., et al. (2000). The family crucibles of illness, disability, death, and other losses. In D. Dollahite (Ed.), Strengthening our families: An in-depth kook at the proclamation on the family (pp. 278-292). Salt Lake City, UT: Bookcraft.

Hamner, T. J., & Turner, P. H., (2001). Parenting in contemporary society. Needham Heights, MA: Allyn & Bacon.

http://www.nichcy.org/ (Website for The National Information Center for Children and Youth with Disabilities. This site provides information on disabilities and health-related issues; national/state organizations and resources; special education rights and programs; parent material and more).

Written by Christina Jackman, Research Assistant, edited by Stephen F. Duncan, Professor, School of Family Life, Brigham Young University.

References

1. Dollahite, D. C. (2003). Fathering for eternity: Generative spirituality in Latter-day Saint fathers of children with special needs. Review of Religious Research, 44(3), 1-18.
2. Dollahite, D. C., Marks, L. D., & Olson, M. M. (1998). Faithful fathering trying times: Religious beliefs and practices of Latter-day Saint fathers of children with special needs. The Journal of Men's Studies, 7, 71-93.
3. Dunst, C. J., Hamby, D., Trivette, C. M., Raab, M., & Bruder, M. B. (2000). Everyday family and community life and children's naturally occurring learning opportunities. Journal of Early Intervention, 23, 151-164.
4. Field, S., & Hoffman, A. (1999). The importance of family involvement for promoting self-determination in adolescents with autism and other developmental disabilities. Focus on Autism and other Developmental Disabilities, 14, 1, 36-41.
5. Gavidia-Payne, S., & Stoneman, Z. (1997). Family predictors of maternal and paternal involvement in programs for young children with disabilities. Child Development, 68, 701-717.
6. Hamner, T. J., & Turner, P. H., (2001). Parenting in contemporary society. Needham Heights, MA: Allyn & Bacon.
7. Krauss, M. W. (1993). Child-related and parenting stress: Similarities and differences between mothers and fathers of children with disabilities. American Journal of Mental Retardation, 97, 393-404.
8. Li-Tsang, C. W., Yau, M. K., & Yuen, H. K. (2001). Success in parenting children with developmental disabilities: Some characteristics, attitudes and adaptive coping skills. The British Journal of Developmental Disabilities, 47, 61-71.
9. Olsen, S. F., Marshall, E. S., Chipman, S., Bingham, J., Buchanan, M., Mandleco, B. L. (1999). Daily stressors and coping responses of siblings of children with special needs. Contemporary Perspectives on Family Research, 1, 311-328.
10. Olson, M. M., Dollahite, D. C., & White, M. B. (2002). Involved fathering of children with special needs: Relationships and religion as resources. Journal of Religion, Disability & Health, 6, 47-73.
11. Peck, D. (2002). What's the problem? A guide to running a problem-solving workshop for parents/carers of children with language and communication difficulties. Support for Learning, 17, 39-43.
12. Sandler, A. G., & Mistretta, L. A. (1998). Positive adaptation in parents of adults with disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 33, 123-130.
13. The First Presidency and Council of the Twelve Apostles of The Church of Jesus Christ of Latter-day Saints. (1995, November). The family: A proclamation to the world. Ensign, 102.
14. Yau, M. K., & Li-Tsang, C. W. P. (1999). Adjustment and adaptation in parents of children with developmental disability in two-parent families: A review of the characteristics and attributes. The British Journal of Developmental Disabilities, 45, 38-51.