Special Education Resources

Parent Cory Moore, speaking directly to professionals, writes, "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." (Moore, 1993, p. 49)

Recognizing the central role of the family in a child's life, many service systems now provide assistance to parents and other family members using what is known as family- centered support principles (Shelton, Jeppson, & Johnson, 1989). Within this philosophy, the family's influence is recognized as primary, both because of its direct impact on the child's development and because the family serves as the link between the child and the outside world. Thus, you have the right to be fully informed and involved in decisions affecting your child and family.

Many of the books listed throughout this News Digest 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. Information also must be exchanged about the needs of your family and about ways to take advantage of helping patterns that already exist within the family. (Fewell & Vadasy, 1986) 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, weaknesses, and so on. To make an accurate diagnosis, determine appropriate therapy or other interventions, and understand both your child and the needs and resources of your family, the professional needs your perspective and unique insight.

The professional, too, has specialized knowledge to contribute -- that of his or her discipline. Often you must rely upon the judgment of the professional in matters that are critical to the well-being of your child, a position that may make you feel on unequal and uncertain footing. How comfortable you feel with the professional, how well you feel that individual relates to your child, and how openly he or she responds to your concerns and input will, in many cases, determine whether you continue to work with the professional or decide to seek the services of another.

Thus, there should be a mutuality in the parent/professional relationship. Both parents and professionals need to trust and feel trusted, both need to admit when they do not know or are wrong, and both need to negotiate with each other (Finston, 1990). Trust, respect, and open communication between parent and professional are, therefore, essential to building a good,working 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 suggest the name of a good speech or physical therapist, doctor, dentist, surgeon, and so on.
• 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" and "doctor-hopping" is necessary to feel certain you have explored every possibility and potential. As Irving Dickman (1989) says, "Shop. Hop. Hope" (p. 100).
• 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 (1980) 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" (p. 78). Peggy Finston (1990) 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" (p. 188).

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 (McBride, Brotherson, Joanning, Whiddon, & Demmit, 1992).

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.