My son is 14 years old and has a disability. I got involved in disability rights advocacy when he was about two. An amazing friend and mentor helped me get involved in advocacy at the state level. She also helped me learn about the education system. I credit a lot of my son’s success to her. Through advocacy, I learned about his rights as a person and student.
One of the most important things I learned was presuming competence. My son uses a communication device to talk. Before he used his communication device, he didn’t speak. We truly didn’t know what he could understand.
He did not have expressive language. We relied a lot on his body language and gestures. Most importantly, we always presumed competence. We believe he understands what is going on around him. We believe he is capable of learning beside his peers.
We believe he can form meaningful relationships. We have enabled him to live a meaningful and inclusive life. We have done this by always presuming competence. He is included in both school and community.
Another important idea I learned was the idea of self-determination. Teaching people with disabilities about self-determination is so important. It teaches them that they need to be involved in making decisions about their own life. This idea encourages people to advocate for themselves.
People with disabilities should be setting their own goals. They should be doing activities they want to do. They should be living the life they want to live. Self-determination is about deciding what you want and going for it!
I was recently reminded of the beauty of self-determination. My friend—mentioned above—has an adult daughter with a disability. My friend was in the process of planning a celebration of life for her mom. In the midst of it, her daughter decided she wanted to paint a picture for her grandma’s table.
My friend didn’t have time and told her they’d have to do it later. Instead, my friend’s daughter called an important adult in her life and asked for help. The painting got made in time and sat on the table at the celebration of life.
This story is a true testament to the importance of presuming competence. It is also a story of true self-determination. My friend’s daughter knew what she wanted. She knew what was important to her. She missed her Nanny and wanted to make a painting for her. She took the skills she had been taught all her life, and she found a way to get help.
This is what having a meaningful life is all about. All people deserve to make their own choices. All people deserve to do what they want. All people deserve to do what they love. It is most certainly about having a life worth living.
Building Self-determination is one of the most valuable things for any child to learn as they grow up.
Autism is a very tricky diagnosis that can affect speech. My son was somewhat verbal throughout his early years, although he did quite a bit of pointing and gesturing. From the early days, we’ve come a long way.
Categories: Family Support