For parents, it can be hard to imagine what an independent adult life is going to look like for their child who has a disability. It is difficult because parents may have to wait until late into the teenage years to fully understand the limitations and abilities their child has. My family and I had to go through the same process of waiting.
When I was little, it was very difficult for my parents to picture me as an independent woman. “What is she going to be able to do” and “what type of help will she need?” they asked. The answers slowly revealed themselves throughout middle school and high school. There were some things I did need help with, for example, going to the restroom, feeding, dressing, and other personal care tasks. However, there were times when it was clear that I wanted to be independent and the fact that I had the ability made my family and I feel fortunate. So, as freshmen year of college approached my family and I outlined times of the day I would need help. The times I needed help were getting up in the morning, breakfast, lunch, dinner, and helping me with my bedtime routine. So, here is what my personal care attendant schedule looks like now:
8:00am-2pm: Kim gets me dressed, feeds me breakfast, takes me to work, feeds me lunch, drives me home
5:00pm: Depending on the day, Jen or Laura come and feed me dinner and I may ask them to help me with errands depending on how long they are scheduled to stay.
11:00pm: My roommate who is also an assistant puts me to bed.
Depending on what hours my assistants want, I oftentimes have to sacrifice some privacy or time to myself. It is understandable that they don’t want to drive for just one or two hours, they may want more. The relationship with a person with a disability and their assistant is unique. They have to have empathy for one another. In my eyes, the parent’s job is to oversee that everything is fair and right. For example, the person with the disability should never be abused in any way. However, the assistant should be respected and should never do something out of guilt such as working more hours without notice.
I hope this helps parents see possibilities for their child to be independent. I realize the definition of maximum independence is different for everyone, however, I hope my story gives parents hope and an idea of what lies ahead for their child which is their definition of maximum independence.