PREREQUISITES OF A PARENT ADVOCATE: I. Love Your Child Unconditionally. Advocating for a child with special needs begins in the child's home- life and with the attitudes and relationships between the child and his or her family. The most effective parent advocates are the ones who unconditionally love and accept their children. The happiest and most gratified parents are the ones who love their children without their love being dependent upon expectations, limitations, and qualifications, because these parents are less subject to disappointments and are able to enjoy and have more fun with their children. Perhaps, what is most important is that the happiest and most productive of all children are the ones who reap the benefits from the unconditional love that they receive from their families. Once parents get over the initial shock that their child has been identified with special needs, it will benefit both the child and the entire family to focus on ways to enjoy the child and to help the child feel loved and happily integrated within the family structure. II. Find A Good Support System. One of the most difficult challenges that parents face in becoming effective advocates is learning to overcome their own feelings of pain and frustration, especially when their child is not receiving the services that are crucial for the child's development. Some parents hurt so deeply, they consider it easier to retreat from the problem rather than confront it. However, prolonged withdrawal not only can lead to depression and anxiety, but no one, especially the child, benefits. Parents can seek support from local agencies, such as Arc (Association of Retarded Citizens), Learning Disabilities Association, and other child advocacy and parent support organizations. Many parents also find support and comfort from their religious beliefs and communities. However, whether it is with a pastor, priest, rabbi, physician, teacher, counselor, professional child advocate, or friend, a parent needs to find a receptive listener with a good ear, and one who responds with a compassionate and understanding heart. It is especially helpful for parents to make friends with a professional or parent who is knowledgeable about the etiology of the condition of their child. Ideally, once a parent locates other local parents of children with similar disorders, a support group in their community is organized. Parents of children with special needs often can provide each other with a great deal of support and understanding, because they share similar frustrations and challenges. Parents can also serve as excellent advocates for each other at meetings with professionals. After all, who potentially can better understand the complex needs and problems of rearing a child with special needs than another parent? III. Seek Training And Information. The more parents understand about their children's conditions and needs, the better able they are to advocate for them. Training and information provide parents with knowledge and understanding that can lead to productive action. Equipped with facts and information concerning the needs of their children give parents credibility and legitimize their requests for better services. What types of training are beneficial for parents advocating for children with special needs? 1. Parenting a child with special needs in the home. 2. Knowing how to access appropriate services for your child. 3. Learning the laws, procedures, and benefits that concern educating and servicing children with special needs. 4. Working with professionals and agencies. 5. Writing an IEP (Individualized Education Plan) for your child. 6. Organizing a parent group. 7. Writing for grants and organizing fundraisers. 8. Setting goals for your child. 9. Speaking at public meetings. 10. Organizing workshops and forums. 11. Working with legislators. 12. Working with the media. 13. Preparing for your child's future (vocational training and options, wills, trust funds, guardianships, group homes and residential issues.) Where can a parent go to find advocacy training? Local branches of city or county school systems, Arc, Association for Learning Disabilities, child advocacy commissions, and other agencies that advocate for or serve exceptional children often sponsor parent leadership training programs, and should be able to provide referrals and information about where other parent workshops are held locally. Also, conferences opened to the public providing general information about children with special needs, may also offer workshops or seminars on parenting and advocacy. It is especially important for parents to attend conferences and workshops that provide information about their children's special needs, particularly when there are professionals in attendance. Many professionals have discovered that they can learn a great deal from parents. The exchange of information between parents and professionals can play an important role in maximizing children with special needs. IV. Look At The Big Picture. To look at the big picture is to acquire an attitude of caring, compassion and awareness toward other individuals with developmental disabilities and their families. When parents are dealing with issues that directly concern their children, it is difficult to maintain a feeling of detachment and to not take things personally. Looking at other exceptional children and their families will remind parents that they are not alone. It can also help to remove some of the personal feelings that can interfere with the performance of an advocate. Looking at the big picture also legitimizes the need to change procedures and rulings regarding improved services for children. It is much more likely to convince authorities that they need to change or add specific services for a particular population, rather than for a single child. Also, many parents feel that looking at the big picture helps them to become better parents, and in general, better people. It develops qualities of selflessness and sensitivity to the needs of others and to the community at large. It is very comforting to be part of an effort that helps improve services and the quality of life for many people. V. Be Optimistic. Optimism and faith help the parent sustain fortitude, patience, endurance and a healthy attitude. Unconditional love inspires volition, motive and drive. A good support system helps the parent cope. Training and information provide knowledge and understanding which can lead to productive action. Looking at the big picture leads to a positive attitude and often, to positive results. Optimism and faith help sustain fortitude and endurance. PARENTS & PROFESSIONALS WORKING TOGETHER There are numerous materials available that offer suggestions to parents on how to work with professionals. The book, The Futures of Children, by Nicholas Hobbs states: "You are the primary helper, monitor, coordinator, observer, record keeper, and decision maker for your child. Insist that you be treated as such. It is your right to understand your child's diagnoses and the reason for treatment recommendations, and for educational placement. No changes in his treatment or educational placement should take place without previous consultation with you. Your success in getting as well informed as you will need to be in order to monitor your child's progress depends on your ability to work with the people who work with your child. You may encounter resistance to the idea of including you in the various diagnostic and decision making processes. The way you handle that resistance is important. Your best tool is not the angry approach. Some of your job will include the gentler art of persuasion. Stay confident and cool about your own abilities and intuitions. You know your child better than anyone else could. You are, obviously, a vital member of the team of experts." To help parents of children with special needs attend meetings for their child's IEP (Individualized Education Plan) or other meetings that serve the purpose of evaluating, negotiating, planning for or obtaining appropriate services and programs, here are some suggestions to help the meetings go smoother and be more productive: 1. Be prepared. Plan a strategy. Before the meeting, confer with the professionals and other individuals whom you plan to meet with about the agenda, length of the meeting, purpose and who will facilitate. Unless, the meeting has a pre-arranged agenda, you have the right to make suggestions in planning the agenda. Be sure that the agenda will provide you with the time you need to ask your questions and express comments and concerns (which should be written down on paper and brought to the meeting.) 2. Never go into a meeting with a group of professionals alone. Bring your own professionals and others (preferably those who are familiar with your child's needs) and will support and advocate for you and your child. Don't be afraid to bring too many people. The more people who are there on your side, the better. 3. Keep records. Keep a notebook and write down notes at all meetings. At every meeting, begin your notes with the meeting's date, time, place, the participants' names and its purpose. Also, write down goals, objectives and decisions discussed during the meeting. These notes can be used as important references and proofs for future meetings (i.e., when a professional fails to keep a promise.) 4. Never go into a meeting feeling angry and vengeful. Although, at times it may be tempting, refrain from use of name-calling, insulting remarks, inappropriate language, hostile hand gestures, shouting and other actions that can later (and most likely will) be used against you. Remember that the meeting is about getting your child's needs met--not settling a vendetta. 5. Stay focused on the purpose of the meeting. Too often the clash of personalities or non-productive conversation dominates the discussion and the child's needs are no longer the focus of the meeting. 6. Be firm! Be persistent! Be audacious! Stand up for what you believe to be just and fair. It is a very effective skill in knowing how to be persistent, while at the same time, not showing anger. It is an acquired skill, because demonstrating firmness while staying cool-headed doesn't come easy to most people. But it often brings successful results. 7. Be polite. For the same reason that we teach our children to be polite, we will find that we will get along much better with the people that we deal with when we display good manners and courtesy. Parents may feel that there are some professionals who simply don't deserve it. In some cases, that may be true. But in meetings of negotiations, consultations, and conflict resolutions, the display of good manners can help strengthen the unity of the group. People will usually respond kinder, have a greater respect for and pay more attention to those who demonstrate courtesy. Again, it is the skill of a wise negotiator who can learn to make demands...politely. 8. Ask questions. Different states use different terms and labels, such as, IEP, IFSP, EMH, TMH, B-EH, and they can be very confusing to a parent who is unfamiliar with the lingo. It is advisable for parents to learn the jargon before the meeting, but when professionals use language that a parent is unfamiliar with, the parent should stop the discussion with an IDU (I Don't Understand!) 9. Take control of the meeting, but don't dominate the discussion. The most successful meetings are those that produce results from group consultation and collective decision-making. While it is very important that you say what needs to be said, it is equally important to listen to what the other participants need to say. 10. Reward yourself. Parents often find these meetings stressful and depressing. Plan ahead to go out to a nice lunch with your friends following the meeting. Or go home and soak in a bubble bath. Whatever, do something nice for yourself. If you followed the above suggestions, you deserve it! 11. Follow-up on the decisions made at the meeting. Write a letter to the professionals and thank them for the meeting. Remind them of the positive decisions that were made and request a follow-up meeting, if it is needed.