I will never forget that night. We were at the dinner table when my then sixth-grader, JJ, had a revelation. He asked why he took the medications (after five years) that were lined up by his glass of milk. I took a deep breath and started to explain. “You have what is called autism.”
Understanding a Diagnosis
“Odd-ism? That’s why I am odd!” JJ said with a sigh of relief. “Can I live with it? Or, will it be a problem?”
“It’s called autism. You may have challenges…difficulties all your life, but you can live with it. You also have amazing gifts!” My heart was racing. I had hidden my son’s diagnosis from him since he was a toddler trying to digest it over the years. Our world had been turned upside down all consumed with an array of specialists, but my son knew no differently. We as parents tend to project our issues on our children. I am confident; comfortable in my own skin. Why had I hid my son’s condition from him?
I realized at that moment I was doing my son a disservice by not promoting self-awareness; self-advocacy. As hard as it was, I had come to terms that I would not always be around to protect my baby; the mama bear that I am. At that time, JJ became a part of his IEP team to help him understand who he is, his strengths and weaknesses, and to help develop an education plan to achieve success. Because of this process, JJ has become very resourceful.
Now that my son is a college graduate, I realize that self-advocacy has been the driving force to support independence. I encourage parents to make self-advocacy a goal in the IEP as soon as possible. Self-advocacy navigates life.
What is Self-Advocacy?
According to Wrights Law, “Know yourself, your needs and ‘how’ to get what you need.” If you understand your strengths and weaknesses, you better understand what you need. And be specific as to what tools are needed to achieve success. JJ understands that he is very visual and learns best by “seeing” than “hearing.” A computer assisted with JJ’s learning process since kindergarten and listed as a tool in his IEPs as part of his objectives to help accomplish his goals. Another young adult I know on the spectrum struggles with speaking, but can write his thoughts down and read aloud what he has written. Know “how” to communicate your needs.
According to the Office of Civil Rights, US Department of Education, “Know your rights and responsibilities.” You then can take advantage of the appropriate academic adjustments as necessary. For instance, colleges offer note-takers, tutors, auxiliary aids and services. Some offer substituting one course for another, modification in academic requirements, recording devices, extended time for test taking, adaptive software or hardware. Most colleges require documentation from a qualified diagnostician or medical doctor to verify the need. Because of JJ’s sensory-overload challenges, he requested a single dorm room supported by a letter from his medical team in which it was granted. Remember it’s important to know your rights and responsibilities.
“Always ask ‘why.’ Ask questions to connect everything to lead back to logic,” says JJ. Be a part of the team to decide what is best for you. Collaborate. Compromise. Stay calm. Be respectful. Can you live with the decision? If you can’t, then ask what’s next or offer a solution. Problem solve. In order to achieve success, know yourself, your specific needs and know how to communicate what you need. Self-advocacy navigates life.