Parenting a Child with a Disability Study Books Used in Class Research Paper

Introduction

Disability among children has grown in figures as more kinds are discovered and new technologies give evidence to certain needs of a child’s development and growth. Most families in the past have been distressed and at a loss for whom to get help or how to handle their child with a disability. The paper will tackle raising a child with a disability with emphasis on parenting.

Discussion

Upon learning that their child has a disability or a chronic illness, parents begin a journey that takes them into a life with strong emotion, difficult choices, interactions with many different professionals and specialists, and an ongoing need for information and services (News Digest, 2003).

Some parents compare this as having a “black sack” pulled down over their heads, blocking the ability to hear, see, and think in normal ways. Other parents described the trauma as “having a knife stuck” in their hearts (Smith, 2007).

It is understandable that no parent wants his or her child to be sick, disabled, or harmed in any way as no one expects to have a journey that is unplanned. But the majority of families find the strength within themselves and among their circles of support to adapt to and handle the stress and challenges with regards to their child’s illness or disability (Brown et al, 2007).

There are different disabilities among different children. The kind and severity of disability also differ in experience of grief and ways of coping. Families can have children with similar disabilities but cope very differently depending on their own situations, finances, and the support they get from the community (CYH, 2007).

When a child in the family has special needs, Krahl (1989) suggested that the changes in the marriage relationship are greater and more demanding (p. 11). Parenting a special needs child create stress and conflict between the parents. Fathers and mothers may react differently to the disability. Lamb (1976) suggested that mothers may respond emotionally while fathers focus more on the future and the long-term concerns of the child.

Anyone or both parents may experiencing grief and may feel alone if the other parent seems not cooperative (Featherstone, 1980). Decisions must be made about the child’s care, and parents may not agree. The sheer demands of parenting can leave each partner exhausted and drained Krahl (1989) wrote, “With all the time you must spend with and for your child, it’s easy to forget to take time for your mate…You can easily lose track of what your mate is thinking, feeling or doing as you concentrate on keeping up with family routines,” (p. 12).

Parents, at most, will probably seek child care. For a child who needs more supervision or specialized assistance, child care may be difficult to find or feel comfortable with. Families who use child care regularly report that it “not only gave us something to look forward to but also broke time down into pieces we felt we could handle,” (Callahan, 1990, p. 175).

Child care generally falls into several categories, ranging from the care provided by relatives, neighbors, or friends who help out. More specialized care may be provided through daycare facilities/providers, respite care services, and nurses/medical specialists. Each family needs to determine its own level of need at any given time. The type of child care will depend upon a number of factors: the nature of your child’s disability, the cost involved in the care, and the length of time for which the care will be provided. A child that requires more supervision or attention than normal but does not need specialized medical care per se, may have a relative, family friend, or a responsible babysitter to occasionally take care of the child.

Daycare can be important for the well-being of children with disabilities as it presents an opportunity for them to socialize with other children providing same opportunities as other children.

The partnership between parents and daycare providers is important especially when the child has a special need. Research showed that preschool and child care centers have the most success in integrating children with disabilities when staff accepts and value diversity with the children they serve (Peck, Odom, & Bricker, 1993).

Many service systems provide assistance to parents and other family members using what is known as family-centered support principles (Shelton, Jeppson, & Johnson, 1989). The family’s influence is recognized as primary due to direct impact on the child’s development and because the family serves as the link between the child and the outside world. Thus, parents have the right to be fully informed and involved in decisions affecting the child and family.

Information must be exchanged about the needs of the family and about ways to take advantage of help or support that already exist within the community. (Fewell & Vadasy, 1986) The parents and the professional need to discuss issues. They also need to trust and feel trusted, admit when they do not know or are wrong, and negotiate with each other (Finston, 1990). Trust, respect, and open communication between parent and professional are essential to building good working relations.

Advocates suggest parents to have expectations about what their child with disabilities can achieve in the future and encourage their child to develop as much independence as possible, in consideration of the nature and severity of the disability (Dickman, 1993).

Conclusion

It is important that the parent/professional relationship empower the parent to be fully empowered through information about what they can do as well as how they can get available support and help with regards to raising their disabled child. It is up to the parent/s to decide on what role/s they want to take in this process.

In the end, the commitment and knowledge of the parents must be encouraged to be of use for the maximum benefit not only of the child but of the whole family and its members. The child, disabled or not, after all, is a member of the family and of the community that deserves what others may have.

Ref

1. Parenting a Child with Special Needs: News Digest 20 (ND20)3rd Edition, 2003.
2. You Are Not Alone: For Parents When They Learn That Their Child Has a Disability by Patricia McGill Smith.
3. The Unplanned Journey: When You Learn That Your Child Has a Disability by Carole Brown, Samara Goodman, and Lisa Küpper.
4. Parenting and Child Health: Children with disabilities. Web.
5. Kid Source On-Line: Parenting A Child With Special Needs: A Guide To Readings And Resources. Web.
6. Krahl, R. (1989). Rebuilding your dream: Family life with a disabled child. Iowa City, IA: University of Iowa.
7. Lamb, M.E. (1976). Fathers and child development: An integrative overview. In M.E. Lamb (Ed.), The role of the father in child development. New York: John Wiley and Sons. (This book has gone out of print but may be available through your public or university library.)
8. Featherstone, H. (1980). A difference in the family: Life with a disabled child. New York: Basic Books.
9. Cernoch, J. (1989). Respite care: A gift of time. NICHCY News Digest, Number 12, 1-12.
10. Callahan, C.R. (1990). Since Owen: A parent-to-parent guide to care of the disabled child. Baltimore, MD: John Hopkins University Press.
11. Peck, C.A., Odom, S.L., & Bricker, D.D. (1993). Integrating young children with disabilities into community programs: Ecological perspectives on research and implementation. Baltimore, MD: Paul H. Brookes.
12. Shelton, T., Jeppson, E., & Johnson, B. (1989). Family centered care for children with special health needs. Washington, DC: Association for the Care of Children’s Health. (A third edition of this book, published in 1994, is now available.)
13. Fewell, R.R., & Vadasy, P.F. (1986). Families of handicapped children: Needs and supports across the life span. Austin, TX: Pro-Ed. (This book has gone out of print but may be available through your public or university library.)
14. Finston, P. (1990). Parenting plus: Raising children with special health needs. New York: Dutton. (This book has gone out of print but may be available through your public or university library.)
15. Dickman, I.R. (1993). One miracle at a time: Getting help for a child with a disability (rev. ed.). New York: Simon & Schuster. (This book has gone out of print but may be available through your public or university library.)
16. 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, Iowa.