Changes

As this year comes to an end and a new one is about to begin, many changes can occur. This has already happened to me. One of my employees- my personal helper, who worked with me for eleven years, retired. At first, I was very nervous about this transition because I was so use to being with her every day and use to the ways she helped me with my daily needs, however it was getting difficult for this staff member to assist me with my daily activities, we both decided that the time had come to end our working relationship.

With the help of my bothers and the agency whom I use for this service, I was able to find new staff. I was very nervous during the hiring process, and unsure how everything would work out. I worked with the same staff member for many years and this was very scary for me. After some interviews, I found someone who I felt comfortable with. We have a lot in common and she has many great ideas for the different projects that I am working on.

Even though I was sad to see my long time staff leave, I am very happy with my new staff. Change is hard for me. However, I feel that this was a very positive change for me.

This has helped me learn that it is important to step outside my comfort zone. I have gained more confidence, and I feel this is improtant for all of us.

I wish you all a happy holiday and a new year full of happiness.

I have published my autobiography

I apologize for not posting in so long, but I have been a bit busy.  I wrote my autobiography and just had it published!  The title of it is “I May Have CP But it Doesn’t Have Me”  and right now it is available only through Amazon.com in print copies and Kindle. If you go to Amazon, just type in my name, or the name of my book and it will come up.  
In my book I talk about what it is like to have Cerebral Palsy and how I managed to have a pretty normal life anyway thanks to the love and support of my family and support people, and through my own stubborn determination.   Hope you will take a look.

A Lot going on

I have not posted here in a long time, and now I have many updates for you. Here is one. I am in process of writing my autobiography. I started it a couple years back, but I was not working on it faithfully. In August of this year, I signed up for a free online writing class. I found it very challenging and frustrating, so I decided not to continue with it.
I decided that I needed something to focus on, so I got going on the autobiography. I try to work on it every day, even if it is just for a little while. One of my staff is helping me out with editing it. Another staff is helping me look for places to self publish the book. I may go with Amazon, but I am quite a ways from that point.
Even though it is MY story, I feel it is very important to have help from my staff and family. Soon I will be sitting down with my brother and brother in law to find some pictures to put in it as well.
It’s bringing back a lot of good memories, and occasionally some not so good memories. I will keep you posted on my progress.

It’s Summertime

I am definately enjoying this summer more than last year.  In the spring I got automatic door opener installed.  Now I can go for walks the neighborhood without having to wait for someone to open the door for me.  Caitlin and and like to go for walks together.

In a couple of weeks I am going to take a week off for a “stay-cation” .  I will be doing a lot of things around here.  I will also be going to East Aurora to the famous Vidler’s 5 & 10 cent store.  I hear they have cool stuff.   I will also probably go to the lake for the afternoon.  Need to get my van detailed too.  It is a mess.

This morning I spent time working on job descriptions for my staff.  It took some time but It is now done.  Just another thing I have to keep on top of when I am “the boss”.

Had a great conference experience

The self advocacy conference was great.  Our workshop went very well.  Many people attended and had a lot of questions about moving out on their own.  They wanted to know a lot about hiring staff, and what we had then do with us.

I also helped a friend with a workshop about Self Determination.  I was really there if people had questions and my friend was not sure of the answers.  Self Determination is a process where I can spend my Medicaid money the way I want.  I was in a Day Hab for 18 years, and I grew out of it.  I was able to come up with a plan to hire my own staff and get my own van.  So, the medicaid money helps me pay for that, rather than the money going to pay for my time at Day Hab and paying their staff.

Going to a conference this week.

On Thursday and Friday, June 5th and 6th I am going to Batavia, NY for our annual regional Self Advocacy Conference.  Here we have workshops that are all about different topics dealing with Self Advocacy and disabilties.  My housemate and I are doing a workshop about living on our own.  We will be talking about the support that we have at home.  We will be talking about how we came to live in this house, and what we are doing to live here as independantly as we can.

I will add to this blog when we get back, and hopefully will have some pictures to share.  By the way, the video in one of my last blog posts has a lot of pictures from a past conference.   It will be a great experience, and I enjoy going every year.

Supervising Staff Can be a Challenge

Wow, what a couple of months I have had.   I am finding that this staff supervision thing can be interesting, to say the least.   Supervising staff can be hard enough, but when you are person with a disability who requires a good amount of personal care, that can make it even more of a challenge.  Because of the “forced intimacy” involved, it can sometimes be hard for me and my staff to separate from that closeness and for me to be taken seriously as a REAL supervisor.   Many people see a supervisor as the person in charge, someone who is in control, or sits behind a desk and gives direction.   But when the person you supervise is also in the role of caregiver, it is hard to define the roles.

I recently had to let a staff go, which was hard for both of us.  but I had to look out for my best interests.  When you are in my position, you do not have the luxury of j sitting back and casually looking for  a replacement.  I needed one ASAP.  Luckily my other staff helped me fill in the blanks in my schedule, so I had consistent services.

So, how does one manage being a disabled person, and a supervisor? I would ask the people around me to help me figure the best solutions to any problems that come up.  I am lucky that I do have the supports I need, and some good staff who are willing to pitch in when the going gets a little rough.

When a situation comes up where I need to act immediately, and cannot call someone for advice at that moment, I need to trust my own instincts and trust my own decisions.  Sometimes I try to think ahead of what possible scenarios may come up and think of a good solution.

I have a situation now where I may need to rearrange my weekend schedule a bit.  My plan is to sit down with the staff involved and see how we can best work out the situation.  I will keep you posted.

What I Didn’t Know Then…

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When I first was on my own, I realized that I had a lot to learn.  First, I was in charge of my own life, and making my own decisions about everything.  When I lived with my mom, she would help me make decisions, or would make household decisions without discussing them with me.   Now I have to make all of my decisions.  But I do have people who will help me along the way. 

Besides being in charge of my own life, I am in charge of my own staff.  I am their supervisor.  Being a supervisor is very challenging at times, but I am learning as I go along.  Supervising staff can be a challenge because sometimes I felt my staff was not used to taking directions from me, as a person with a disability.  Sometimes I thought they did not take me seriously.  I realize that a disabled person’s situation is unique because of many of us needing such personal care.  Sometimes , I think it is hard to separate the supervisor from “the patient”.   But I am learning to have more self confidence, and I realize that I can be in charge and keep the respect of my staff.  I respect them and all they do for me, as well.

When I was still living with mom, I did not realize how many day to day household responsibilities that she had, that I just took for granted.  I knew she had to go grocery shopping, but I did not realize how much groceries really cost.  The first time I did the shopping, I could not believe how much I had spent for what seemed like not a lot of stuff. But my staff person helped me realize that I had done well, because some of the things I bought would last me several weeks.   I had to look at the bigger picture.

Even remembering to buy household supplies, like dish soap, laundry detergent, paper towels is something I need to remember some times.  My housemates and I share the responsibility of buying household cleaning supplies, I just need to remember to take my turn too.   I should let you know here that we each buy our own food, but sometimes we put stuff together and share a big meal together.

Any Questions??

First post, part two.  I will be writing often about my experiences living on my own, and how I managed things.  If you ever have any questions for me, based on what you have read, feel free to post them in the comments, and I will take the time to answer them for you.