Advocacy, in terms of a special need, is hard work. It’s a skill that is developed with time, but it’s a vital skill for your child with special needs to learn at a young age. Why? Because as hard as it may be to grasp, you, as the parent, won’t always be with him or her to make sure that his or her needs are being met. Especially when they get to be my age and independent during their time away at college, they are their own best advocate and know their needs, at times, better than you do as their parent.
One of the most common questions surrounding the concept of self-advocacy is the question of age. How young is too young? My answer to that is simple. It’s never too early to teach your child the ins-and-outs of dealing with people, coping with the condition, and the art of being grateful for the services that they are provided.
The second, and perhaps the most important, question asked is that of how you teach self-advocacy. Admittedly, it’s not an easy concept to teach, but it’s an even harder concept to learn. So, three steps should get you on the right track to having an advocacy superstar!
Activate. Let your child take a small role in their care and management from a young age. Activate that interest within them by showing them what’s involved in drafting the IEP before the meeting, e-mailing the doctor to verify medication dosages, and preparing morning medications. Ask them, depending on age, how you should word e-mail or which medications they should take at the time. Give them an active role in the process of their own self care, and when self- advocacy transfers to the school setting, the fears and anxieties associated with asking questions to have needs met will be minimal. Just watch. They’ll start to want to help you manage their care, and some of your burden as the parent will be alleviated.
Believe. Let your child know that you trust him or her with understanding and knowing his or her needs. This comes with a warning, however. Believing may require your child to take risks that may cause them to fail, and you, as the parent, may look on in agony, but that’s the only way your child, just as anyone else, will learn right from wrong or will learn what works best in their situation and what might not work as well. By allowing these risks, you’re showing your child that you believe that they are capable of living a productive, happy, and healthy life while successfully managing their needs and their care. If you believe in them, they’ll believe in you!
Charge. Once your child is of age, and in most states, that means that they are fourteen, charge them with one new advocacy responsibility per year until the age of 18 or 21, depending on what is required of them. For the first year, many students run their IEP meetings with the assistance of the team, just as you do. You may need to assist with writing and making appropriate phone calls and other contacts, but ultimately, especially in the school setting, your child is the expert on his or her academic and social needs. The expression and vocalization of those needs and desires may be difficult; however, part of the road to advocacy is identifying the weak points for your child in an effort to strengthen them and creating and molding a self-advocate that can’t be shaken.
As always, if you can share any of your personal experiences with training your child to be the best self-advocate possible, feel free to sound off in the comments!
Editor notes: Erin is a college student with cerebral palsy who is passionate about advocacy, educational psychology, creativity among students with disabilities, and gifted students with disabilities. She is a regular blogger and social media activist and enjoys writing about her experiences as a young adult, twin, student, and future professional with a disability. Follow her on Twitter at @ErinRBreedlove