EMAIL FRUSTRATIONS

I only type with one finger. Staying signed in to my email account is a lot easier for me. I have had the same email provider for a very long time and never had an issue. Periodically, I would have to sign in again, but that was no problem, I would just re-enter my password. Everything was fine. Until this past month.

I was prompted to verify who I was by retyping my password. I did. I was told what I had typed was incorrect. I tried several times. I changed my password and thought everything would be fine.

I enjoy composing and sending emails on my Kindle.  I type slower and have to proofread them really well because I make more errors. I like to sit at my kitchen table and send emails. That proved to be a problem because when I tried to enter the new password on my Kindle my email provider wouldn't recognize it.

I tried every password I'd ever used. Eventually, I got locked out of my own account. Twice. I guess they thought I was a hacker. I found a toll-free number, called, and was going to explain my situation, but all I got was a busy signal. I envisioned a future of being locked out of my own email account once a month forever. I was very frustrated. I called my internet service provider. They were of no help.

I have switched email providers and things are fine with my Kindle and email I have a problem with an update not installing. I'm thankful that I have family and friends to assist me with computer issues.

I love my laptop. it allows me to stay in touch with friends and family, play games, and do research for stories. But when there is a problem I sometimes feel like throwing it out the window.

I have tremendous respect for those who can diagnose technical computer issues and fix them.

YOU ROCK!!!

Last week I had a new caregiver for two days. This is always stressful for me as I do not adapt to change well. I have had the same three caregivers for several years. .They are used to me and I am used to them. We work well together.

When I have had a new caregiver in the past, the agency has allowed the new caregiver to stop by my home so that one of my regular caregivers can show them how to transfer me as well as other things that need to be done for me. This was not done last week, although I was assured by the agency that the new caregiver could perform the type of transfer I needed. I was told by the office, "She's the best worker we have." I prayed that she was

The caregiver would not take direction from me at all. She would not do a transfer where she would assist me in standing up and I pivoted. She lifted me up out of my chair and placed me on the toilet.  I told her again and again she'd hurt herself if she continued to physically pick me up as she was doing. Sure enough, by the end of the day, she was complaining that her back hurt.

A person who's disabled knows what works best when someone is assisting them. Caregivers should be open to taking direction from their clients. And, clients should be open to trying new ways of doing things.

If you are a temporary caregiver, ask your client if there is anything they'd like for you to do. Please don't use the excuse of, "I'm just filling in. I don't know the routine," then watch TV and make plans for the weekend on your phone. A client's house needs to be clean. it doesn't matter if your a temporary caregiver or not, the client's needs still need to be met.

 Never fail to appreciate your caregivers. Never take them for granted. I have three of the best caregivers. They help me and Lucie in any way they can. We'd be lost without them.

A LONG, HARD ROAD

When I started Meramec Community College, in nineteen seventy-six, offices for the disabled didn't exist. There was one counselor for the disabled. I went to him for a while. When I enrolled, in the human services program, I no longer needed his assistance. 

I was responsible for taking my class notes (I transcribed them from a tape recorder.) and making sure I was given extra time if I needed it when taking tests.  

There were no automatic doors and elevator buttons were out of my reach which meant I was always waiting for someone to either open a door or push a button for me. The college did have a campus nurse who helped me to the bathroom during the day. My time as a student at Meramec was one of the happiest in my life. The faculty and staff supported and assisted students with disabilities long before it was required by law.

I obtained my bachelor's degree in human services from Fontbonne University. I was the first student ever to use a power chair. A ramp was put in at the entrance to one of the buildings. I had to find someone to assist me during the day. The secretary from student services helped me whenever I needed it. 

By the time I got to Fontbonne, I had discovered carbon paper. On the first day of class, I would go up to someone, introduce myself, and ask if they'd mind using the carbon paper so I could a copy of their notes. I made some good friends in the process too. 

I was in a dual enrollment program with Fontbonne and The George Warren Brown School of Social Work at Washington University. I was only on campus at Fontbonne for a year because, in my senior year at Fontbonne, I began working on my master's at Washington University The credit counted for both degrees.

 I wouldn't say that Meramec and Fontbonne were difficult schools, frustrating at times maybe, but not hard. The title of this post definitely describes my years at Wash U. The school made it clear they didn't want me as a student.

My first advisor said he'd rather see me fail than help me. I registered early so that all my classes could be moved to the only two classrooms on the first floor. A ramp was put in so I could get to the first floor from inside the door. Accommodations were made in one of the restrooms to accommodate my chair The first year I could get to the student center. The second-year construction work was being done I was unable to safely get there. In between classes, I was in a little room used by part-time faculty I studied because there was nowhere else to go. I was isolated and alone most of the time, that last year. In my last semester, I took four of the most difficult courses because my first advisor failed to tell me about them. They almost did me in. A dean tried to put me at the end of the line for graduation, but my second advisor intervened.

I think it's important to remind young people with disabilities things weren't always the way they are now. Services weren't provided. Schools could tell you they didn't want you. You had to find ways to get what you needed on your own. Sometimes I think the ADA makes it too easy. I'm glad I had to find ways to get the things I needed on campus myself. I think it made me stronger.

KEEP ON DREAMING

I have been having difficulty coming up with meaningful blog posts topics. I thought about writing about getting a new laptop and my struggles in going from Windows XP to  Windows 8.1. I wrote approximately two paragraphs and was bored, so I knew you would be too. I thought about writing about how professional my caregivers were in getting Lucie and me to a safe place in my house during the storms last week. But then I remembered I'd been there and done that. I even thought about writing about updating my resume, but who wants to read about something as mundane as that?

Then, I had an idea. Cher will be making a stop in St. Louis in June during her Dressed to Kill Tour or as she calls it her, "Farewell, Farewell Tour." I'm going to try to get a letter to her. One of Cher's friends is on Twitter. I plan to tweet her daily in hopes of getting a reply. 
I figure her friend will either reply or block me. I couldn't write about that. No one would take me seriously as a writer. You'd all stop reading my blog immediately

What I can write about is that dreams don't always have to be sensible. Sometimes you can go after something just because you want to. Because it would make you happy. So what, if people think your dream is silly. It's not their dream, it's yours. I encourage you to dream outside of the box once in a while. Your dreams don't always have to change the world. Sometimes all that matters is that they are important to you.

"Just remember that without our dreams we'd be dead. "  Grace told me that.

I plan to make the concert the best night I have had since my mom died. if I am able to get a letter to Cher, it will make it even more special.

LISTEN TO YOUR MOTHER

This past Tuesday I had the privilege of auditioning to be part of a national show celebrating mothers and motherhood in the form of the spoken word. The show is called Listen To Your Mother. It is performed in thirty-two cities across the country. https://www.eventbrite.com/e/2nd-annual-listen-to-your-mother-st-louis-tickets-10716877469

When I submitted my piece for consideration I did not think I'd be chosen to audition. Needless to say, I was overwhelmed when I was selected to be part of this amazing show. Sadly, I didn't think it through very well. Arranging caregivers and hours would have been too difficult especially on the day of the show, so I declined the offer. I want to thank Ellie, Laura, and Naomi for allowing me to audition and for thinking my story was good enough. I wish things could have worked out differently. .I encourage all of you to get tickets for the show on May 10th. You won't be disappointed.

It was suggested to me that I post my submission piece here. Since it will soon be four years since my mother's passing that seemed like a good way to mark the upcoming anniversary of her death.

SHE NEVER GAVE UP

My mother was a hard worker. Raising three sons and a daughter with a disability was no easy task. Along with doing all the things a mother is responsible for, she also worked with my father in our family’s grocery store. My father worked hard to provide for us but did little around the house. It was a different time. Men weren't as enlightened as they are today. They didn't know it was okay to help with household chores. My grandmother helped as much as she could by babysitting me and doing some of the cooking. Even with my grandmother’s help, my mother still had a lot on her plate. She never complained.

Once my parents learned I had Cerebral Palsy there were doctor visits and physical therapy sessions. My physical therapy was to be done at home too. I’m sure mom was tired by the end of the day, but she did my limb stretching anyway. She never complained.

When I was seven I joined the Girl Scouts. Mom would leave the store and meet my bus at a stop along the route so that I wouldn’t be late for the meetings. She never complained. And, when I was eleven, I was in Shriners Hospital for over three months. Mom only missed one day visiting me and on the day she was unable to visit me in person she sent a card.

In 1970 my father died. It was an unimaginable loss to our family. My two oldest brothers were grown and out of the house. I was twelve and my brother Bob was fifteen. Mom still had to put us through school. I’m sure she was scared and wondered how she’d do it. She never complained. She got a job at my school after having volunteered there. My brother and I both got our degrees.

My mother did what she had to so that we had what we needed and most of the things we wanted. It didn’t matter if she had to get up before six in the morning so that she could drive me to my college classes and make it to work on time. Or that she had to spend her entire Sunday afternoon typing the final draft of a term paper I’d written. I only type with one finger and it was before the age of computers. She did it and never complained.

Mom broke her hip after falling when she got up because I had to use the bathroom. She managed to go upstairs to get a crutch and try to help me. She couldn't and I had to call 911. When the paramedics arrived the first thing she said was, “My daughter has to go to the bathroom. Would you help her?" They did. When she was diagnosed with colon cancer in 2005, she showed the same spirit. Mom did well after surgery and we thought she’d beaten it, but in 2009, the Cancer returned. Even after being placed on Hospice, Mom tried to do as much around the e as she could as well as making sure caregivers did everything for us the way she would have done it. When she couldn't do things herself anymore she supervised.

My mother passed away on March 30, 2010. She was almost ninety-two years old. She taught me to work hard and never give up.

Happy Mother’s Day Mom, I love you

ONE TWEET AT A TIME

I saw this story on our local news this morning

http://www.ksdk.com/story/news/2014/03/04/fort-zumwalt-south-get-andrew-honerkamp-on-espn-sportscaster-twitter/6030551/

It's the story of how students at a local area high school organized a twitter campaign to help a fellow student realize his dream of being on ESPN'S Sports Center. Andrew's goal is to be a sports broadcaster. What makes this story unique is that their classmate, Andrew Honerkamp, has Cerebral Palsy. He is unable to participate in sports but loves to watch them 

A big shout out Andrew's classmates for supporting him and trying to make his dream a reality. I have no doubt that it will happen. I am happy that Andrew has such a support system in his classmates and school.

This story illustrates why inclusion and mainstreaming are so important to children and young people with disabilities. Not only for academics but for socialization and acceptance as well. When I was in high school we were not given many positive messages. We were not encouraged to dream or set goals for ourselves because I doubt our teachers thought we could achieve them. I'm so glad it is not that way today.

I encourage anyone with a twitter account to tweet at #ANDREWONSPORTSCENTER and show your support for Andrew. If you don't have a twitter account, sign up. 

The top 10 reasons that Andrew should on ESPN;

 ttps://www.ksdk.com/article/news/local/classmates-share-top-10-reasons-why-andrew-should-be-on-espn/282205986

Come on everyone. Tweet.

HAPPY BIRTHDAY COLIN

Imagine being a young boy with disabilities that cause you to act out in class. Your classmates don't like you. You eat lunch in an office at school every day rather than having another student be forced to eat lunch with you. And, when your mom asks you about celebrating your birthday with a party, you tell her there is no point because you have no friends. This is the case for Colin.  

To have others send positive messages and birthday wishes to her son, his mom created this Facebook page https://www.facebook.com/Coliniseleven Collin is now receiving messages from all over the world.  Great news. Why then, does it bother me?

This is 2014. I thought children would have been taught a little more about compassion and accepting others for who they are. Children need to be taught and shown by example that we are all unique and special people with gifts to offer the world. 

Before I attended my first Girl Scout meeting the troop leader prepared the girls for my arrival the following week. I don't know what she told them, all I know is that my time as a Girl Scout was one of the happiest times in my life. The girls accepted me without question and always found a way to include me in whatever they were doing.

The last time I wrote a post on inclusion http://confessionsofadisableddiva.blogspot.com/2012/11/inclusion-is-beautiful-thing.html I received comments about how difficult it can be to have a child with special needs in the classroom. That it took time away from the other children. I know teaching is a difficult job. You have large classes of students who all need and deserve the best education possible. All I'm suggesting is that if children have a classmate with special needs perhaps teachers could have a lesson on compassion and acceptance. so that a child with special needs can feel they are not a valued member of the class.

.I was saddened by the fact that Colin's mother had to create a Facebook page to ensure that her son would receive birthday wishes for his birthday on March 9th. I hope you'll all wish Colin a happy birthday. I hope that next year a Facebook page won't be needed, I pray that he'll have friends to celebrate his birthday with.

HAPPY BIRTHDAY COLIN!