Still at home

This is the last week in May and we are still at home. My brother got me a camera and microphone for my computer. Now I can video chat with my friends and take part in meetings. I have reconnected with some friends. I think that I have talked to more people this way and I had before. A few of my good friends have been talking weekly and are going to start a blog about our friendship.

Also, my brother got me a robot cat and I just love my new friend. My new friend meows, purrs and rolls on her back. For this reason, I named my pet Floppy. I just love her. Floppy is a lot of company.

Thanks to my brother, he made staying home more enjoyable for me. Although, I still miss going out everyday. Hopefully, it won’t be long before we can get back to our lives.


Stuck At Home

I have been at home for about a month now because of the cornavius and it has been  hard.    I am used to going out everyday to therapy and to my volunteer job.

My therapies and some of my volunteer job meeting have been on Zoom. I enjoy seeing my therapists and friends over the ccomputer.

I can’t get Zoom on my computer because I don’t have a caamera and microphone on my computer but my staff has been letting me use theirs.    My brother ordered both of these features on Amazon for me,  and they should be here in a week or two.

My roommate,  Cait is with her parents until things get better.    I really miss her.  My other roommate,  Beck is here with me, and I am really glad about that.

I don’t know what I would do without my computer.    It has been my outlet to the world.

Like everybody else, I just want things to get better so,  we can get back to our lives.


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 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.