We have a great group of local families working on full communication for their kids using RPM and other forms of typing like Facilitated Communication. We meet in various settings and this week some parents met at our house and we asked James and his friend Huan to share thoughts with the group as well as answer questions in a panel format. Huan is 18 and is a close friend of James. His public school setting is very difficult, so people in our community are working on getting some much needed change in the district. James feels strongly with Huan that a full, mainstream education is a right that is being denied many people with autism so they spent some time discussing this with the group. James opened the meeting with the following statement and some of his other comments are below as well.
My Journey to Myself.
I began my journey 2 years ago with Soma. Then Elizabeth. Then Shannon. Occasionally, I remember that fall of 2013. I remember how hard it was, the grunting, and the hope. That Christmas I wrote letters to each member of my family, my first true words to my siblings, but it took days. Now I attend a homeschool group with my best sidekick, writing literary analyses. I also fit in clothes, go to Awana, have real friends, and I typed this whole thing in under 30 minutes on a Friday afternoon. These pale in comparison to becoming who I am independent of autism. Shannon listens and guides me on my journey because I am more than autism, I am James.
Parent Question: What is the best way to deal with people or therapists who talk to you like you are a baby?
James: They will learn when I tell them my thoughts. If they don’t listen, they will never get it. It’s not worth my energy.
General discussion of school settings where students with low verbal autism are not respected:
James: I don’t want to go to (public) school but others do so it is important we help. Huan is the warrior, we need to help him.
Parent Question: How and when did you learn to spell?
James: I taught myself out of boredom. I was always trying to prove to myself I was there.
Parent Question: What do you think of the current definition of autism that states it is primarily a disorder marked by social deficit? Do you think that might change?
James: My body betrays my thoughts. People react to what they see, but it is a motor disorder not social (disorder).
Parent Question: Explain the role of the person who holds the letter board for you. How is different than typing on a keyboard independently.
James: I need the independence but love and need the person.