By Jeremy Sicile-Kira
Our contributor, Jeremy Sicile-Kira, is the focus of this issue of the eBulletin. Jeremy received a grant from the Autism Research Institute this year to document his experiences with his new in-home support staff, JameyLee Nuss and Matthew Murphy, while they participated in the AGI Online Residential/Daily Living Course. Jeremy shares his perspectives regarding direct support and his long-term plan to live in his own home here.
"Thanks for the Online Support Course"
Dec 14, 2014
Having well-trained direct-support providers is frankly the key to having a successful life for me and others like me. Two new direct-support providers who joined my team nicely had the opportunity to take the online AGI Residential/Daily Living Support course. They learned more about autism then I could kindly teach them.
Basically the AGI course gave them a really firm foundation for understanding why I was the way I am. The course justly explains key elements about how to figure out why we act the way we do and how to best support a person with autism of different abilities. General information about autism is not always nicely explained in training given by organizations who hire staff to support people like me or other types of autism. Often training for support staff is about legal, medical, safety and health issues. They may train on how to handle behaviors, but not about why we have those behaviors.
True self-determination is the ability to be able to make your own decisions and make dearly important and less important decisions about your life. This could be as simple as choosing what kind of cereal you want to eat or as important as choosing where you want to live. Basically, for someone like me who has movement differences and sensory challenges and uses Augmentative and Alternative Communication (AAC), it is very important that support staff have an understanding and belief in self-determination. My support staff who went through the AGI training had a better grasp of self-determination than before they started working with me.
My seasoned staff learned about self-determination by listening to my mom and reading what I and others had written. The new staff following the course and learned faster and more completely how self-determination in reality applied to my life and how it meant they had to learn all the best ways to support me.
I am very grateful that my two new staff members had this opportunity. They learned how to insure that my dearly-needed supports were in use. Having plans is the most important support. The staff help me to schedule my time so I have work, chores, learning, and social activities. Mixed in to my schedule are strategies to help me stay regulated. My mother in the past helped with this scheduling; now well-trained staff can help me build my own schedule. Having a plan means believing that I know how to prepare myself mentally for the day. Having a plan is important to avoid stress and anxiety.
The very kind support staff behave better when they have an understanding of what causes difficulties for me. My hope is that I won't much need very much support someday in the future, and that I can become more independent. The AGI course gave the new staff a better understanding of techniques to help me learn how to physically move my body to learn and do functional living skills. My body gets stuck. This means that when I try to move it does not respond to my command.
The staff made conversational remarks about the course and I could tell they were learning more and improved every week. I noticed that their confidence grew as their knowledge did. When staff feel comfortable, I do as well. The staff understands how to best support me when I experience anxiety and PTSD. Frankly nice staff make me feel safer when I'm out because I know they can help me stay calm. My comfort level goes up when I feel safe.
My mom does not need to train new staff who took the AGI course about autism, only about Jeremy-specific training that I want my support staff to have. Truly I feel more happy knowing that when I move out to my own place there is a program that can help with training new staff.
About the Author
Jeremy Sicile-Kira is a writer and painter. He serves as a Young Leader of the Autistic Global Initiative. To learn more about Jeremy, visit http://www.jeremysvision.com/.