Imagine relying on assistance of another person to accomplish every single task you need to survive on Earth.  Usually, kids are pretty physically self-sufficient when they reach the age of four or five.  If all goes right, those physical capabilities last a lifetime.  Often, as people reach their senior years, they sometimes need more assistance again, but generally most people have at least 50 or 60 years where they’re physically able to take care of themselves.  For people with disabilities (born with or acquired) or health conditions, relying on other people to assist you with all of your basic needs can often seem overwhelming.

As I’ve explained in previous entries, cerebral palsy affects every part of my body.  I need complete assistance with all of my basic needs like toileting, bathing, and dressing.  My disability was caused from  complications during birth, so I’ve never known life any different—I’ve always needed quite a bit of help.  As a child, I guess I didn’t really realize how much assistance I required because it was never made into an issue.  My parents did all of my cares and we were a “normal” family.  I never went to any special camps or respite programs.  Family members took care of my sister and I occasionally while my parents went out to dinner or very occasionally on weekend get-a-ways.  Just like many other families do, we also had high school babysitters take care of us occasionally.  Though I didn’t realize it at the time because I was a kid, my parents had to do some extra training with them to ensue my needs would be met.  Those high school kids had to be pretty incredible people to agree to watch a kid with significant needs—I remember I loved the babysitters we had. 

When I first started school at the age of three, I was in Early Childhood programs, so there were lots of instructional assistants that helped all the students in the class.  When I entered Kindergarten, I was in a regular education classroom, so a one-on-one assistant was assigned to me to help me.  This person helped me with whatever I needed to succeed in school (getting books and equipment set up, taking notes, getting from one place to another, feeding, toileting—the list is endless).  I had some incredible assistants through the years.  I was amazingly blessed to have the same assistant with me second through twelfth grade.  That’s pretty unheard-of in today’s world.  We were very lucky that the district allowed us to stay together all the way through; we developed a very special relationship!  We are still close today.

Starting in junior high, a home health came in just for an hour or so after school just to get me off the bus, take me to the restroom, and give me a snack.  Like I discussed in a previous entry, this was the first time I had actual care aides taking care of me.  Though they didn’t really do many personal cares with me, I still had to develop a relationship with them.  Many of them were middle-aged woman, so they were like more babysitters to me, and I don’t mean that negatively.  Since they were older, though, looking back, that’s probably why I had very few problems with them.  They knew what needed to be done and understand the responsibility.  I still keep in touch some of them.

College was a whole different experience.  I obviously needed assistance with all my basic needs.  As I’ve talked about many times, the care agency I had in Whitewater hired a lot of students which was really cool.  Probably because I was young and a student as well I had very few problems with aides.  They knew what I needed and that I relied on them.  It rarely happened, but when there was a problem between a worker and I, the agency would often just take the person off of my schedule.  This was mainly possible because my friends would often pick up the shifts.  I admit I was probably a little spoiled down there!

When I moved to Oshkosh, the two agencies I had had a mixture of people working for them.  I then began to realize what I would be facing for the rest of my life.  It takes a special type of person to be a caregiver.  Some people have it and some don’t.  When I had problems with a person, the agencies would try to work the problem between us out.  Sometimes the intervention worked, but often it just made things worse.

Over the years, I’ve gotten much better at working with people.  Now that I’m hiring my own staff, I’ve realized that “good ones” are few and far between.  I’m not going to be friends with every person I hire and that’s ok.  I’ve learned that some people need to be told what to do and how to do it over and over.  Work ethnic widely varies, and professionalism is often lacking.  I have to have a lot of patience working with my staff as there’s a variety of personalities and attitudes.  It’s definitely a challenge.

Having to rely on others for assistance creates a unique lifestyle.  You have to be very patient; yet you have to be so organized.  I’ve realized that as frustrating as it is, this is something I’m going to have to deal with the rest of my life.  Admitting, sometimes I lose my cool on people who are trying to help, but I think everybody has moments of frustration—it’s part of life! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.