Advocating for Your Child
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Avery was concerned because her 2-year-old daughter, Helen, was not walking. She had heard that blind children sometimes developed motor skills at a slower pace than children who were sighted, but now that Helen had turned 2, she felt that a professional who was knowledgeable about the development of children who are blind or visually impaired needed to evaluate her daughter. Avery realized that if she didn't make this happen, no one else was going to. With a little bit of research and networking, she found out that what Helen needed was an assessment from an orientation and mobility (O&M) specialist, an expert in teaching visually impaired children how to move about and travel on their own. Then Avery went to talk to Helen's early intervention coordinator, prepared to advocate on Helen's behalf.
The word "advocate" comes from the Latin word for "voice." Being your child's advocate means you are her voice when she is not able to speak up for herself. All parents advocate for their children, but because children who are visually impaired may have special needs and require special services, their parents may need to advocate for them in additional ways.
Like Avery, you need to consider taking on the job of making the necessary things happen for your child in all aspects of her life—educationally, medically, and socially—when she's too young to do this for herself. Although laws such as the Individuals with Disabilities Education Act (IDEA) provide for your child's education in this country, the reality is that there may be times when you believe your child would benefit from a specific service, professional consultation, equipment, or type of instruction that is not being offered to her. In those cases, you may need to advocate with school or medical personnel to make sure your child gets what she needs. This may take place in a meeting of your child's Individualized Family Service Plan (IFSP) team (or later with the Individualized Education Program (IEP) team) or directly with an administrator in your child's educational program or another professional. Your special knowledge of your child and the importance of advocacy—and your right to advocate—are recognized in the IDEA legislation, which identifies you as a critical part of your child's educational team.
Tips for Successful Advocacy
Regardless of the situation, the following suggestions can help you achieve what you want for your child when explaining her needs:
- Know your child. All children have strengths and needs. As a parent, you know your child's abilities and challenges more intimately than other people do. Be comfortable stating what you know to be true about your child. When you're dealing with professionals from whom you want services, be prepared to back up your views with medical reports or information, photographs, or video clips.
- Do your homework. Know your child's rights under the law. Also learn about the services, equipment, or instruction that you want your child to receive so that you can explain how they will benefit her. You can gather information from talking with others, reading books and articles, and visiting web sites. Make copies of relevant information for others to review. Try to formulate clear reasons for your requests.
- Build relationships. As your child's advocate, it is important for you to build relationships with others involved in her life—educators, doctors, nurses, occupational therapists, or anyone else providing services to her and your family. They will be more open to hearing your point of view if they already know and respect you.
- Attend meetings. When your child is young, IFSP meetings will involve you because early intervention teams especially focus on working with families. Once she is in preschool, her educational team can meet without you if you don't attend. However, you will be notified when a meeting is to take place. Try to attend these meetings. If the time is not convenient, it is important to notify the team and ask for meetings to be scheduled when you can be present. The meeting will then need to be rescheduled, and you will have made clear that you're a concerned parent.
- Acknowledge the viewpoint of others. Sometimes you and others involved with your child may have to "agree to disagree." It's important, though, that you hear each other out. Try to listen politely to the views of others and ask that they in turn listen to yours.
- Be persistent. If you're not comfortable with a decision that will affect your child, stand firm on what you're asking for and restate your position. Be polite but persistent. You need not feel pressured into making decisions. It's okay to tell people that you need time to think about something before agreeing to a course of action or signing a document that will have an effect on your child's education.
Being an effective advocate doesn't require specialized skills or extraordinary capabilities. Nor does it need to involve attempts to influence programs and policies—although many parents engage in this level of advocacy. It simply means making the case, in a focused and informed way, that something is important and needs to be done for your child.