Parenting Children with Disabilities: Discover the Gift that is Yours

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"Husband and wife have a solemn responsibility to love and care for each other and for their children. ‘Children are an heritage of the Lord' (Psalms 127:3)."

-The Family: A Proclamation to the World

Research about parenting children with disabilities has often focused on the negative aspects, such as family disruption and stress. But many researchers are now saying they've overstated the negatives and overlooked the positives. While families with disabled children do experience challenges, newer studies show that with good support they're as vibrant and healthy as families without disabled children.

Many parents, in fact, feel their families have been blessed because of their special child. They say they're closer and have become more compassionate, tolerant, sympathetic, flexible, and selfless.

Strategies for Adjustment and Coping

While each family experiences struggles unique to their child's disability and family situation, the families who report a positive parenting experience tend to share several characteristics in common. Researchers recommend the following based on their findings:

  • Allow a period of grieving. Every parent expects to have a perfect, healthy child. Disappointment can be acute when you learn your child has a physical or mental disability. You may experience feelings of denial, anxiety, guilt, depression, or even anger. Don't be ashamed of these normal reactions. A period of grieving is natural as you begin the coping process.
  • Maintain a strong marital relationship. For most couples, their spouse is their greatest source of strength and support. Learning your child has special needs can be traumatic for both of you. Discuss concerns and feelings. Be sensitive to the different ways you might react to the situation. Now is the time to come together—not apart. Keeping your relationship strong will increase your ability to adapt to your new situation. Life's daily challenges will become more bearable as you lovingly work through them together. A strong marital bond also helps your children cope.
  • Stay positive and have realistic expectations. Researchers say that families coping well with a special needs child keep a positive attitude, have realistic expectations of their child, and are less preoccupied with negative thoughts.14 Understanding the following principles can help you adopt these coping skills:
    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 calm yourself. 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/her own rate. Don't compare your child with another or pressure her to keep up with her peers. She child will grow and learn at her own rate. Keep goals realistic. If expectations are too high, you and your child will be disappointment and may lose motivation.
    4. Your child needs your help to maintain self-confidence. Accept your child as he is. Allow him to feel unconditionally loved because of who he is—not what he 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. Negative thinking makes the situation worse. It takes energy to stay in negative thinking about a difficult situation. Use your energy for positive action.
    7. You're not to blame. 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.
  • Turn to religious faith for strength. Religious faith and beliefs provide many families with strength, support, and hope during times of difficulty. Belief in a divine plan allows many fathers and mothers to find meaning in their situation and to rise above discouragement. Many parents see their special needs child as a divine son or daughter of God and believe it's a blessing to be entrusted with this special spirit in their home. They feel their child was sent to them for a purpose. You can draw hope and strength from knowing that you have "a sacred duty to rear [your] 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 (¶ 6).
  • Actively seek support. You don't have to face a challenging parenting situation alone. Join a parent support group where you can share experiences and worries with others in a similar situation. Educate relatives, friends, or neighbors about your child's disability and communicate your needs and feelings. Most will be anxious to help and only need you to tell them how. Also, you don't have to reinvent the wheel. Many programs and services can help. Actively seeking support can greatly decrease stress and anxiety for you and your family. Begin by talking with doctors, schools counselors, and religious leaders. You may even have a neighbor or close friend who can recommend a particular service, website, or professional.
  • 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 the needs of your children who are siblings to a special needs child. Allow them to talk freely about their feelings. Do your best to help them understand their sibling's disability. Teach them how to help when they see their sibling in need. Discuss together ways to handle difficult situations.
  • Enhance resiliency. Children learn by example. You can help them become more resilient by being a role model of resilient behavior. As you react in healthy ways, problem-solve, persevere, and adapt to stressful situations, your children will learn these same skills. They'll notice your strength as you advocate on their behalf to schools and doctors. Along with setting an example, give your children opportunities to practice resiliency skills, such as making choices and experiencing consequences.
  • 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. Evaluate what doctors, specialists, or teachers tell you. If they're not providing quality services, know your options and seek alternatives. Also, know your legal 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) http://www.eric.ed.gov/archives/disab1.html.

Conclusion

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.

Additional Readings

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. 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 Disabilities47, 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 & Health6, 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 Disabilities33, 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.