How I'm Finding Independence Through Personal Care Aides

March is Cerebral Palsy Awareness Month. I’ve lived with this disability my entire life. As with most human beings in this journey called life I’ve needed help; however, I require more help than most. When I was younger my parents were my main source of support. In certain circumstances they still are, although as I’ve gotten older I’ve learned to depend on others more to help me live more independently. At first it helped slowly, but as I’ve gotten older I’ve flourished. Here’s the story of the assistance provided for me throughout my life.

When I was a young pup, I shared an aide with my best friend who had autism. At first I didn’t understand why, but as I’ve gotten older I’ve realized it was the only way to “kill two birds with one stone.” It wasn’t until junior high that I had my own aide. Usually the transfers were rough; nobody really knew how to handle me. It was even rougher because I had to use the bathroom a lot and I had a number of accidents, because the teachers thought I was faking it. High school was totally different though. After my case manager saw me working well by myself, she decided fewer aides were a good thing. For the first time in my life, I was all by myself. Luckily for me, I proved myself worthy, but college was a totally different monster, at least in the beginning.

In college I struggled with having at least 50 accidents my freshman year. It was really damaging to my self-esteem. My aides helped out, but some of them were greedy and wanted more hours. I didn’t get the help I needed until I found Sarita and Larisha. Sarita is my second mother, a source of inner strength wisdom, kindness and growth. Often when I didn’t want to eat the crappy dorm food, she’d bring me chili or collard greens she cooked from home. When she first started working, she had recently lost her son, but she remained a source of strength and courage for me, always making sure I was clean, had a full tummy and “never sweated the minor things,” her favorite quote. Larisha had a calm coolness about her I really appreciated, always balancing relentless energy with a tranquil serenity. It also helped that we had the same taste in music, and I’m sure my dad and mom really appreciated her favorite saying, “Cleanliness is next to Godliness!”

I also would hire friends to be my aides. I hired Steve, Chris and JB. Steve is my best friend and somebody I could always depend on, whether he was lifting me back into bed if I fell or taking me to go swimming or to the movies. Steve was always there and continues to be there today. Chris was another really good friend and we always had a good vibe. He was also there when I needed him and we would play video games and talk about girls and just shoot the breeze. Lastly, JB was my “good dude” who never had any experience as an aide, but shined brightly anyway. I’m thankful for all of them.

As I’ve moved back in and out of my house there has been an adjustment period. When I first moved back, I was reliant on college kids in the morning to help get me up and get me going. Due to time constraints the assistance was for only an hour. Now that I live by myself I have an individual who comes from 6:30 to 9:30 in the mornings and 7 to 10 at night and 8 to 11 on the weekends. It gives me more time to be by myself and think about what I’m going to eat or what I’m going to do for the day. My aides have been helpful and caring and I’m grateful they are there for me.

My experience with aides has been a long and winding road from a shared aide to having an assistant of my own. I’m learning how to manage my aides independently, and I wouldn’t trade it for anything else in the world!