Future Reflections January 1982, Vol. 1 No. 2

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LETTERS TO THE EDITOR

Scottsbluff, NE

I've been re-reading the first issue of the NFB Newsletter for Parents of Blind Children. That is an exciting beginning. My, how I wish that an instrument such as this had been available thirty-five years ago! It would have been a real source of strength and support to me as a parent of three blind children, and I'm sure Laurie Eckery's parents feel that way, too. Count on me to help keep it going and to tell others about it.

But I have to be honest--and say that part of my enjoyment was in seeing contributions from my kids. If this Newsletter had been available when they were younger, maybe no one would be impressed with their accomplishments today; and that would be neat if blindness were no longer feared and blind persons were accepted without question.

That's the stuff dreams are made of and this dream is becoming reality. Dream on!!

Sincerely,
Ruth Ireland

******

Columbia, MO

As a parent of a severely visually impaired nine year old child, I have had more than my share of communication problems with physicians. This past month my daughter spent ten days in the hospital and I was reminded again of how frustrating this problem can be.
As a parent, I felt in a bind. I needed the doctor, but I felt angry because he seemed to be doing nothing about her problem and appeared to be unconcerned. I didn't know what he was doing or what he planned to do. This uncertainty caused me to be very anxious, and I was already anxious about my sick child. I was afraid that if I made him angry he might take his anger out on my child or on me when we needed help. I am sure all parents of blind children have had similar problems and frustrations. Let me share a recent experience with you. I recently had a physician come into my daughter's hospital room after I had challenged him on an issue regarding my daughter's care. He told me, "I don't care about you or what you think. I am only concerned about your daughter." I felt intimidated and told him so. He threatened to refuse to handle my daughter's surgery.

Can you imagine his saying this to me! I pay the bills and I am responsible for signing all consent forms for medical and surgical procedures. Logically, I knew I was within my rights as a parent and consumer. However, I was worried that this disagreement would affect the care of my child. This incident caused an uncomfortable conflict. I was worried first about my child being sick, possibly needing surgery and possibly loosing all her newly grown hair (from recent radiation therapy); and now I was worried that my disagreement with the physician would affect her care. Besides, it was Christmas time and that is a hard time for a child to be sick.

Fortunately, the physician realized that I was genuinely concerned about my child and that my previous questions had not been answered. Communication started to improve. If I had not risked the questioning and his anger, I would have remained unaware of his thinking and plans. I would encourage parents of blind children to ask questions so that they are aware of what the physician plans for their child. Take a few deep breaths, try to relax, and use some of the suggestions below if they seem appropriate for you:

1. Be sure your questions are clear and specific. Practice asking friends and relatives before the visit to be sure the questions are clear.

2. Ask the question in a loud clear voice. Sound as if you expect an answer. Repeat the question if there is no immediate response.

3. Be sure all your questions are answered before the doctor leaves. Do not hesitate to walk to the door with him if he tries to leave before you are satisfied. My husband has been known to walk down the hall as fast as the doctor to get questions answered.

4. Be aware that as a parent you have every right to information about the plan for your child's options in treatment and the doctor's perception about the future health of your child. You may even ask to see your child's medical record.

5. To better coordinate medical care for your child with his school program, ask teachers if they have questions for you to ask the doctor.
Many times schools and physicians differ on what is best for your child. We had this problem when the teacher recommended physical
therapy for our daughter and the physician felt it was unnecessary. The parent has to make the final decision in matters such as this.
It is important that both the physician and school are aware of what is being done for your child. Ask the physician to send a summary
of his findings to your child's teacher (and you), for your child's records. I take my child's Individual Education Plan (IEP), to share
with the doctor.

6. If you find that you still cannot easily ask questions:
a. Give your written list of questions to the doctor to answer.
b. Take someone with you who will ask your questions.
c. Ask to talk to a nurse or social worker, and have them communicate your concerns to the doctor, or ask your child's teacher to help you.

Be sure to listen to the physician when he answers questions. Ask him to clarify words or ideas. Believe it or not, some parents do not listen to the doctor when he explains his plan for the child. Either they are afraid to hear what he is saying or they are uncomfortable and appear to be in a hurry to leave. Doctors with experiences like these feel that it is useless to talk with parents.

While listening to the doctor, it is a good idea to take notes so you can remember what was said. Talking to a doctor can be scary, one study has found that people remember only 25% of what the doctor said immediately after talking with him.

These are some of my experiences and suggestions for communication with doctors. I would appreciate opinions and further suggestions. I am sure I will have to be prepared to deal with this problem again in the future.

Annette M. Kobriger

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