Your child and his challenges often seem like the center of your whole life. So it may seem like they should be important to everyone else, too. But that’s not realistic. The reality is that many of the service providers, medical professionals and educators you deal with on behalf of your child have a lot of other challenges and responsibilities. In a sense, you are competing with those other challenges and responsibilities. To get the care, services and help your child needs, you must win their attention to your child’s cause. You must advocate, or speak up, for your child.
At first, you may be uncomfortable speaking up and talking with professionals about your child’s needs. That is OK. For many of us parents, it was difficult at first. But we learned how to do it because we knew our children needed us to “step up.” And you can learn how to advocate for your child, too.
You care for your child so you know him best. You know what makes him happy, and you know when he is unhappy or sick. You know what he likes and doesn’t like. You also know when something might be wrong or a plan isn’t going well. Being the expert on your child is important. Doctors, teachers and therapists need you to help them understand your child’s needs.
Partners Resource Network (PRN) is a non-profit agency that operates the Texas statewide network of Parent Training and Information Centers (PTI's) funded by the US Department of Education, Office of Special Education Programs (OSEP). The Texas PTIs help parents understand their rights and responsibilities under the Individuals with Disabilities Education Act (IDEA) and participate as team members in planning services for their children. PRN offers workshops and assistance on a variety of topics related to disabilities and special education.
Vela (Austin, Texas and surrounding areas) is a nonprofit organization that serves to create a community where all families of children with disabilities thrive. VELA gives parents the knowledge, empowerment, resilience and community needed to become their child's greatest advocates.
1. Gather information—Learn about your child’s disability, read books and articles, attend conferences and consider joining a parent support group in your area. Get comfortable with medical and education terms and acronyms (Words formed from the first letters of words; for example, IEP stands for Individualized Education Program).
2. Ask questions—Ask the medical, therapeutic and educational professionals you deal with lots of questions. And don’t be afraid to ask for clarification if their answers are confusing or complicated.
3. Communicate effectively—Be prepared for all meetings and appointments. Put your concerns and progress updates in writing and be ready to share. Be clear, calm and direct when speaking. Listen and take time to think about information that is discussed or shared with you. Take lots of notes.
4. Bring documentation or data—Documentation or data will help your case more than bits and pieces of things you pull from your memory. Present your documents or facts in an orderly and readable format.
5. Be persistent, but polite—Remember, your child is one of many others. So you often have to be persistent to get what he needs. You may need to learn how to be more assertive for your child than you have ever been for yourself. But you also need to build and maintain relationships with the service providers and educators who will help your child. That means being persistent AND polite. You may feel angry inside sometimes. It’s OK to feel that way, but letting anger and aggressiveness out can work against you and damage those important relationships. Don’t take your anger out on the people who you are trying to get to help your child. Instead, “kill them with kindness.” It will work much better in the long run.
6. Stay calm—This is a marathon, not a sprint. Losing your patience and your composure at every setback only makes things harder on you and your child. You may feel like stress and worry are motivators. They are not. Stress and worry are destructive. The more stress and worry you can eliminate, the more effective an advocate you can be for your child. The reality is difficult enough—don’t let your own negative thinking make it worse. Focus on what you can control, not on what you can’t.
Adapted from the National Center on Learning Disabilities, "How Parents Can Be Advocates for Their Children.”
Growing roots is now called Vela.