Advocating for special needs children By Mia TennenbaumPhoto courtesy of Mia Tennenbaum Author Mia Tennenbaum cuddles with Joseph, 7, Iyla, 2 weeks, and Eitan, 5.
Advocating on behalf of my now 7-year-old son has been an adventure. When the academic years arrived, they brought with them a variety of new challenges for our special needs child. Fortunately, as parents we have been able to work effectively with schools to get our child the services he needs. And finding the right services can truly help a special needs child thrive. Nothing is more rewarding than knowing you helped make it happen. Here are some tips on how to make the job of parent-advocate easier.
1 You are part of a team. Each special needs child is required by law to have an individualized education plan, or IEP, developed by a team of school staff and private specialists. Parents are an integral part of the team-not just someone brought in to listen. Parents often need to fight to get services from the school, because what is in the best interest of the child may not be in the best interest of the school's budget. But it is in everyone's best interest to find common ground and work together. Besides, thinking of yourself as part this larger team helps alleviate feelings of isolation and insecurity.
2 Know your rights. Education is customer-oriented and we need to become highly educated consumers to make sure our children are getting the services they are entitled to under the law. Contact the Illinois State Board of Education toll free at (866) 262-6663 or visit www.ISBE.net and request a free copy of the Parent's Guide: The Educational Rights of Students with Disabilities.
3 Become an expert. The more we know about our child's condition, disorder or diagnosis, the better an advocate we are. Contact experts on your child's disorder such as doctors, clinics, agencies or specialists. Use your library and read books, journals and articles about the disorder; make use of the Internet by finding Web sites of organizations that specialize in the disorder, or start with reputable sources such as the National Institute of Mental Health (www.nimh.nih.gov) or the American Psychological Association (www.apa.org). Remember some resources are more reputable than others. Dive into the materials and look for consistency. Don't just believe the first thing you read or hear.
4 Create a support structure. We need energy and encouragement, so we must surround ourselves with people who support us and make our lives easier. Educate friends and family to bring them into the circle of caring and responsibility and keep them up to date. Find a support group to meet other parents going through the same struggles. Seek professionals who can help reduce your stress. Also, don't forget the ones we love-nurture our relationships with a spouse or significant other to alleviate tension and bring balance.
5 Be exceptionally organized. File each document for easy future reference. For example, use an accordion-style file folder with several pockets. Label pockets with subjects such as: medical, IEP or IFSP (individual family service plan) meetings, evaluations, therapeutic services, research, insurance and billing.
6 Check emotions at the door. This is your child, of course you are emotional. But when you are a parent-advocate, emotion can often become an obstacle. Keep a cool, level head and express your wishes in a professional, respectable way. If you cannot handle doing this, find someone who can speak on your behalf. “You really need to be able to think and express yourself logically,” says Julie Raske, mother of a 7-year-old with severe early anxiety issues. “Whether it is with professionals or your own child, emotion only aggravates the situation and makes it more difficult to get anywhere in a productive way.”
7 Know the key players. As you learn the school's system, take notes on the names and titles of everyone you deal with. Learn what roles they play and how they might impact decisions about your child. This empowers you to hold people accountable. Learn the names of your legislators and congressional representatives as well. They are important advocates.
8 Take advantage of resources. Many communities offer free or low-cost services. Ask questions. Talk to school and local government officials. If no services are available, don't assume that means no money is available for those services. Talk to state and federal legislators. Every federal legislators' office has staff to research constituents' questions. What should be available? Ask around. Read the local paper. If you live in a community with little to offer, consider starting something with people who share similar interests.
9 Communicate, communicate, communicate. Communication in any form is one of the most important jobs of a successful parent-advocate. Liz Smith, mother of two children ages 13 and 15 with attention deficit and hyperactivity disorder, or ADHD, says, “My greatest advice on communicating with the school is to get everything in writing. Even the smallest change to an IEP should be addressed in writing. It can often be your only recourse should things not go as planned.”
Follow through with school professionals to give you a heads-up on any change in your child's behavior or mood. Provide administration with feedback to keep lines of communication open. Arrange for private practitioners to have direct contact with the school and keep everyone in the loop.
10 Trust yourself. We know our children best. If others' opinions conflict with our instincts, we can do some research. Get multiple opinions before giving in. Smith agrees, “Using your instinct is the key to being a successful advocate for your child. It is unsafe to place the school's, or anyone else's authority, over your own. If your initial instinct does not pan out, no decision is written in stone-you always have the right to change your mind.”
Mia Tennenbaum, mom of three, is a therapist and educator specializing in parent/family support and advocacy on the North Shore. She can be contacted at www.MiaSharon.com.