Parenting a Child with Special Needs (continued)

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 at: http://www.archrespite.org.

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 www.amazon.com and from www.specialneeds.com)

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 www.amazon.com or www.specialneeds.com.)

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. Kupper (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. (Quotation 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: www.specialneeds.com)

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 www.amazon.com or www.specialneeds.com.)

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.)

Publishers

Berkley Books
Penguin Putnam Publishing Group
405 Murray Hill Parkway
East Rutherford, NJ 07073
Telephone: (800) 788-6262
Web: www.penguinputnam.com

Communication Skill Builders
Attn: Customer Care
19500 Bulverde Road
San Antonio, TX 78259
Telephone: (800) 872-1726
Email: customer_care@harcourt.com
Web: www.psychcorp.com

Little, Brown
The resource listing "Little, Brown" as publisher is available through your local booksellers or booksellers on-line such as amazon.com. To help readers identify either a local or on-line bookseller, Little, Brown (through Time Warner) provides this address: www.twbookmark.com/where_to_buy.html.

NICHCY
P.O. Box 1492
Washington, DC 20013
Telephone: (800) 695-0285 (V/TTY)
Email: nichcy@aed.org
Web: www.nichcy.org

Paul H. Brookes Publishing
P.O. Box 10624
Baltimore, MD 21285-0624
Telephone: (800) 638-3775
Email: custserv@brookespublishing.com
Web: www.brookespublishing.com

Woodbine House
6510 Bells Mill Road
Bethesda, MD 20817
Telephone: (800) 843-7323; (301) 897-3570.
Web: www.woodbinehouse.com

by Patricia McGill Smith