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Winter 2003 Table of Contents
Versión Español de este artículo (Spanish Version)

Becoming Your Child's Best Advocate

By Mary Zabelski, President, National Association for Parents of Children with Visual Impairments (NAPVI)
Reprinted with permission from Awareness, 2002 Special Double Issue.

Editor's Note: Awareness is published quarterly by The National Association for Parents of Children with Visual Impairments, Inc. To become a member or to order any of NAPVI's publications, contact them at P.O. Box 317, Watertown, MA, 02471-0317, 1-800-562-6265, www.napvi.org  or napvi@perkins.org .

As your child passes through the educational system, you will need to acquire knowledge and information about the educational issues facing him or her. As a matter of fact, you will need to become your child's "best" advocate. You will find yourself working on behalf of your child, to make sure that the specialized educational services, guaranteed in the federal laws, are actually available in your state or local school district. We want our children to reach their full potential. To do this, they much have equal access to the classroom materials like their sighted peers. In a perfect world, all of the specialized services that the educational and civil rights laws entitle our children to receive, would always be available and easily obtainable. In this real world of ours, the full range of necessary services may not be available unless you actively work on acquiring them or "advocating" for them.

As your child's advocate, you may have to deal or bargain with your child's school district or local school to acquire the necessary services. Services mean the specialized teaching from the special education teacher, vision teacher, orientation and mobility instructor, and other related therapies (e.g., occupational therapy, physical therapy, speech therapy). You may find that you need to arrange for or "negotiate" for services through discussion and settlement of terms with the local educational personnel. Sometimes the services are not readily available and you will have to present your request in writing or through meetings with the educational staff, special education administrator of the district or the principal. The parents' role becomes critical to the success and positive educational experiences that can occur. More importantly, your involvement in decision-making is the key to developing a positive and meaningful educational program for your child.

You may think that the professionally trained teaching staff automatically knows what is best for your child. This is not necessarily the case. Remember, most pre-school, elementary and high school teachers have no training that helps them to understand what modifications and accommodations students who are blind or visually impaired, deaf-blind or multi-disabled, might need to properly access their textbooks and materials like their classmates. Remember that you have more information about your child's medical issues and the visual/medical diagnosis than the school personnel do.

It is important to recognize that the regular classroom teacher may not be familiar with your child's visual disability and how to provide the specialized services your child needs. When discussing the need for specialized services, the regular classroom teacher and the special education or vision teacher should be present. You may want to ask for a meeting to discuss these issues before the formal IEP meeting.

If your child has problems in school because of the lack of specialized services or a need for a change in services, you will need to speak up and negotiate for them. IEPs should be developed jointly, between school personnel, service providers and parents.

When my blind daughter was in the lower grades, I wanted her to develop the skills that would help her to be independent as she got older. I knew that she had to learn how to travel independently, learn to take care of her belongings, dress appropriately and develop friendships with the other students. I wondered what kind of job she could hold as an adult, considering she was "blind". You as the parent, may be thinking about these issues, but the regular classroom teacher is generally not trained to look ahead. Many skills that are necessary will not be taught in the school your child attends. You should discuss these skills with the special education teacher and other therapy staff, so that you can work toward these objectives in school and at home. Each one of our children has a different area of strength and need. We can help them if we think about what skills they need to develop for future success in the real world, and advocate for the services to help them attain these skills.

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Last Revision: August 25, 2003