Sunday, June 30, 2013


The idea for this post this post came from this article on Yahoo.;_ylt=A2KJ2PbSI85RAnMAmmLQtDMD  After I posted the link on Facebook, a friend asked what my message in a bottle would be.

2113, a century from now, I am trying to imagine what things will be like. The first thing that came to mind is that space travel is commonplace for ordinary citizens.  People will be zipping around in space like the Jetsons, discovering other life forms and learning from them.

No more typing on computer keyboards or using voice recognition software.  You’ll be able to use a computer by just looking at the screen.  The computer will be able to complete tasks for you by reading your mind.

Okay, I may have gone a little too far talking about the computer.  Here's what I hope is happening a century from now. I hope that all major diseases like cancer have been eradicated so that no one has to suffer anymore.  Disabilities are   a thing of the past.  I hope that all the people of the world are at peace with each other.

If I put a message in a bottle and threw it in the Missippi River and watched it float away. Here's what my message would be:

Remember those who came before you.  Their struggles made life better for you. I was here.  I did my best.  I'm not perfect.  I tried, failed and tried again.  Try, do your best.  That's all you can do.  You'll be okay.


Thursday, June 20, 2013


It has been brought to my attention that my posts may be too negative.  I have been told I shouldn't write about things that happened in my childhood. It's in the past, so move on.  People have asked if anything good ever happens to me.

Of course, positive things happen to me.  The best thing that happened to me was being able to share my blog in two online newspapers and, it goes without saying, that the best thing to happen to me was being able to publish my children's book.  I'm blessed to have neighbors who look out for me.  During a recent storm, when my power was out, my neighbor gave me a flashlight with a button that is easy to press to turn the flashlight on.  It also has a beam of light that is big and bright.  My neighbor knows I get nervous during storms.  I go to my library three days a week.  Right now, I'm am signing people up for the adult reading club at the library.  I love doing that because it is a fun way to meet people.  I enjoy eating out when I can.  Several weeks ago, I went to Jilly's Cupcake Bar and Cafe.  I had a Twisted Pink Velvet Cupcake.  I didn't know cupcakes could be so delicious.  I can't wait to go back.  Why didn't I blog about any of these things?  Because I didn't think they had a message.  

I believe our experiences make us who we are.  I write about my experiences growing up because I want people to know what it was like for disabled people before the Americans With Disabilities act was passed.  Before the word inclusion existed.  It was a time when disabled children had very few rights. It was a time when we were segregated and had very little exposure to our able-bodied peers.  I wonder sometimes, especially at the school I attended, if we were even thought of as people by some of the adults who worked there.

When I write about something you might perceive as negative or depressing, the positive message to take away from it is, I got through a tough situation, I survived and I am sill trying to make a difference and live my life the best I can. 

That’s what I want children with disabilities to know.  Life is tough, when you have a disability, but you can get through anything.  You are just as good as anyone else.  You matter.  You deserve to be treated with respect and dignity.  Have faith in yourself.  When people tell you that you can’t do something, don’t listen to them. Keep trying.  If you’re striving for a goal that’s mean to be, it will happen.  If it doesn’t, come up with a new goal to strive for. The important thing is to never give up. I can't think of anything more positive than that.

Sunday, June 16, 2013


I was given a new caregiver last week.  I also changed my schedule.  I asked that the new caregiver start an hour earlier to make it less stressful for me.  I went over the changes with the office staff and thought everything was fine.

My new caregiver comes from the home of another client.  They leave that client's house at the time they are supposed to be arriving at mine.  The first night .they arrived ten to fifteen minutes late.  That wouldn't have been bad, except for the fact that earlier in the day I called the office to confirm that the new caregiver was coming and was informed that the new caregiver was with another client and would not be coming.  The office told me they didn't have anyone else to send.  When I asked what I should do, the staff member said they didn't know, but I’d better call somebody.  They suggested I call one of my other caregivers. I didn’t think it was my job to find someone.  I was told a little while later that the new caregiver would be coming after all.  The office got the schedule mixed up. When the caregiver was a few minutes late, I was afraid they weren’t coming because of what the staff had told me earlier.

When the new caregiver's shift ended, the next morning, they assured me they would come on time that night.  I didn't think I had anything to worry about.  I was wrong.  They didn't come at the agreed upon time.  I called the office.  The office had not heard from the caregiver, they had no idea where the caregiver was. They were not answering their cell phone.  The office was trying to get someone to come for me, but having no luck.  I  was frantic and so were they.

The caregiver finally arrived two hours late.  Their explanation was that their car battery had died.  Their cell phone was also dead so they were unable to let anyone know what had happened.  Things turned out okay.  It was, however, a night to forget.

There are two things that bother me.  I have been told the new caregiver needs more hours.  Why schedule clients in such a way that their times overlap and as a result, a caregiver can't help but be late to a client's house?  The answer is a sad one.  Money is more important than a client's well being.

Caregivers always manage to keep their cell phones computers and other devices charged when they are working for me.  If a caregiver knows they are going to be traveling on the highway at night, it is their responsibility to make sure that their phone is charged and ready for use in an emergency.

I didn't write this to cause trouble for myself.  I hope I have no repercussions from writing this post.  The incident happened; it was frightening   I think there is too much focus on what is best for the caregiver.  They need more hours, so let's give them as many clients as we can.  While my caregiver is now coming on time, what affect does it have on clients when schedules overlap? Do agencies think about the stress it may cause a client when a caregiver is late and the client has not been notified as to why?

I have been with my current agony for almost six years.  Nothing like this has ever happened before.  I pray it never happens again.  I know home care is a business and businesses need to make money, but let clients know that their concerns and wishes matter.  Don't forget you’re dealing with people’s lives.  People just like you. 

Saturday, June 1, 2013


With Memorial Day being the unofficial beginning of summer, many children will be heading off to camp.  From the ages of eight to approximately eighteen, I was no different.  I attended Camp Daniel Boone.  It was located near St. Charles, Missouri.

I went to camp with two of my friends.  I remember getting on the bus and not wanting to go.  You see, I never liked to be away from home.  Mom always thought that if I went with friends, I would have a good time.  And, she was right.  The problem was the camp director thought it would be a good idea for me to make new friends.  More often than not, I was put in a cabin with people I didn't know.  I only got to see my friends at meal time and sometimes during the evening programs. I was very unhappy and homesick.  The camp director would end up calling my parents to pick me up.  One time, insisting that my father come pick me up at night.  He didn't.

The years when I was placed in a cabin with my friends, I had a great time.  I just needed to be around people I knew.  I was (and still am) shy.  Shouldn't the camp director's focus been on making my experience at camp a happy one?  I could have made new friends while being with people I knew. 

My camp experience wasn't all bad.  I enjoyed swimming.  Even though I couldn't swim on my own, it was at camp that I used water wings instead of a plastic ring to swim.  What a feeling of freedom they gave me! I enjoyed making crafts too.  It didn't matter that I wasn't very good; I still enjoyed trying to make whatever the craft was.

When you're a child, adults always think they know what's best for you.  When you are a child with a disability, adults really think they know what's best for you. You can't force a child to make friends.  Maybe some children can adapt to being with people they’ve never met, I couldn't.  I wish the director of the camp had just allowed me to be with my friends every year.  I wish he would have been more I concerned about whether I was having fun, rather than being concerned about my making new friends. If fun had been his priority, I would have stayed the entire session every year. I would have been a much happier camper.