Ruth Swenson, chairperson of the legislative committee of the Parents of Blind Children Division of the NFB, has been collecting materials from various sources (such as Pilot Parents) regarding parents rights, the Individualized Education Program (I.E.P,) process, and tips for handling I.E.P. and other school conference meetings. She put some of those ideas together with her own specific comments for parents of blind children, and came up with the this list of suggestions.
Ruth Swenson, by the way, has unique credentials. She is blind and multiply handicapped; she is the mother of a blind, learning disabled teen-ager; and she is a liscensed attorney. Law, however, is a second career. Her first career was as a special educator of retarded children.
Ruth has been active in the National Federation of the Blind for many years and currently serves as the president of the NFB of Arizona. She is also part of our Parents Division Network of parents and blind adults who are willing to share information and experiences about raising a blind child. Her phone number and address are: (602) 892-4344; 311 West McNair Street, Chandler, Arizona, 85224;
SUGGESTION#1: Ask a friend or advocate to be with you for moral support and help.
SUGGESTION #2: Remind yourself of those
things you have a right to expect as a
1) The right to be there discussing a very important concern--your child.
2) The right to function in a role of parent as you do for all your children.
3) The right to expect people to view your handicapped child as a child first, with the same basic needs as any other child.
4) The right to ask for and receive clear explanations from people whose actions affect your family.
5) The right to air your concerns without criticism or intimidation.
6) The right to say "I don't know" or "I don't understand".
7) The right to refuse inappropriate requests or pressure without feeling guilty, selfish, or ignorant.
8) The right to "shop around" for the kind of professional advice you respect.
9) The right to encouragement in the difficult job of rearing your child.
SUGGESTIONS #3: Be knowledgable about
your legal rights.
1) Know as much as you can about your legal rights under federal and state statutes. Knowledge gives confidence.
2) However, do not feel you have to know everything. Even if all you know is that Public Law 94.142, the Education of All Handicapped Children Act, gives you and your blind child some rights and protections (and you don't even have to know what those rights are), you already know more than most people -- including the professionals.
SUGGESTION # 4: Be knowledgeable about blindness and know what you want for your child. Again, knowledge brings confidence. The National Federation of the Blind can help you learn about blindness and what you should expect of, and for, your blind child. Don't feel guilty, however, if you are still not sure about some thoings. None of us ever know it all. We can only do our best under the circumstances we are given.
SUGGESTION #5: If there is tension,
learn to tune in on yourself and others
every so often throughout a meeting to
rate the tension level. If possible,
ask a friend who is present to signal
you if you show undesired signs of
Manage tension physically by trying
one or more of these ideas:
1) Take several deep breaths ;
2) Tense and relax some muscles, such as arms or legs;
3) Stand up and stretch;
4) Ask for a one to two minute break;
5) Find someone in the room who looks relaxed and try to model them;
6) Shift your attention to some physical activity (have coffee, write notes, etc.).
Manage tension verbally by:
1)Momentarily shifting the topic;
2) Saying something humorous ;
3) Saying out loud that you do feel tense;
4) Asking for the meeting to be rescheduled if you feel sure you won't be a productive contributor.
SUGGESTIONS #6: If you missed an opportunity
to say something.
l)Write yourself a note to use later.
2) Take a break and discuss the matter with a friend.
3) Bring the incident up anyway, during or after the conference.
4) Write a letter to the conference coordinator immediately after the meeting.
5) Plan to bring it up at another conference (and practice the statement you wanted to make before you go).
SUGGESTION #7: If someone has just made
a provoking statement, you choose to:
1) Ignore it and continue.
2) Use silence and a direct gaze to underscore the comment's inappropriateness.
3) Label the comment for what it is in a calm voice (good luck) and express your feelings about it.
SUGGESTION #8: If there is conflict,
stop the meeting and reschedule for a
later date. Decide in the meantime what
your approach should be:
1) Peaceful coexistence.
2) Compromise (sounds fair, but it is not always the more reasonable solution, because it can be a way of avoiding or postponing dealing with a problem).
3) Direct problem-solving.*
4) Filing a formal complaint.
5) Requesting a due process hearing.
* Steps in Direct Problem-Solving
1) Define the problem. Leave out any expression of how you feel.
2) Collect information to support your statement, such as other professional opinions, papers showing past performances, letter showing your ef forts to correct, etc.
3) Express the need for change. Find out whom to talk to, invite a friend or advocate, and come prepared with a well practiced statement, background information, and suggestions for possible ways the problem could be solved.
4) Work to help make changes. Join with others, such as the National Federation of the Blind and the NFB Parents of Blind Children Division, to work on common problems and concerns. If we all contribute some time and talent, we can get more done with less effort than if we try to go it solo.
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