Saturday, August 23, 2014

I AM WHO I AM

Sometimes, I think if you really knew me you wouldn't bother to read this blog. Sometimes, I feel like a fraud.  I portray myself as an independent person when, in realty, I am dependent on others for almost everything. 

I can no longer afford to keep Lucie. I have decided to give her away because it will be better for both of us. I will have the opportunity to meet the people who are taking her before I give her away.. The good news is that they will bring her to see me , I won't lose total contact with her. I am also about to lose my van. I will have to learn to get around using transportation services for the disabled. And, I am going to apply for Medicaid. I don't have a choice. With all these upcoming Changes in my life, my emotions are getting the best of me.

Why am I telling you all of this? You may think it's to get attention or sympathy. That could not be further from the truth. I am telling you this to.let you know that, if you are disabled,it's okay to be dependent on others for your daily needs. It doesn't matter how much or how little you can do for yourself, I have said this before, it's  how you think and feel about yourself that is important. There will always be people ready to point out your limitations. Focus on your strengths. As long as you have a brain and you can think, you have something to offer. Focus on the positive, not the negative.

A good cry is therapeutic.It's cleansing. It always makes me feel better. 

I may not be as strong as I'd like to be  I may not be as independent as I'd like to be. I am who I am/ I am a work in progress. I am doing the best that I can.









Friday, August 22, 2014

A CALL FOR CHANGE

One of my caregivers was fired for mentally abusing me. It's true, she used  threats and intimidation to, for lack of a better term, keep me in line. Threatening to call my family if I didn't go to bed when she thought I should, threatening to abandon me and asking if I wanted the police to come help me, threatening to drop me to the floor and call an ambulance if I didn't stand up when my knee was hurt. I knew the things she said were inappropriate, but I was used to it, used to her. I didn't want someone new i my home. On her last night, when those in the office heard her yelling at me and she was replaced, I began to wonder how many other clients she had treated this way? How many others had put up with her treatment as I had? How could the agency not have known?

Two weeks ago, I couldn't wake up a fill-in caregiver. Turns out, the caregiver could not hear well and that was the reason I had difficulty waking her up. Again, how could the agency not have known this? 

I know that agencies run background checks. I think more needs to be done. Perhaps monthly home visits by someone from an agency to make sure things are going well in the client's home. I had someone from my agency visit me after the caregiver had been fired . They wanted to make sure I was satisfied with the care I am receiving. Why did it take a caregiver being accused of abuse to have someone visit me  to ask how things were going in my home?

Why do many nursing homes smell of urine when you walk the halls? I suppose I am a hypocrite for asking this question because I have many carpet stains from Lucie's accidents and  caregivers use Fabreeze to try to hide any odor. Lucie is my dog. She's old and she is family, so I make allowances for her, but a health care facility should not have an odor. I  also know there are many accidents in nursing homes. I know of someone in a nursing home, who fell out of their wheelchair and broke their hip. I guess the reason is facilities are understaffed. Employees can't monitor all residents one hundred percent of the time.

There needs to be better monitoring of the staff who work in agencies and facilities. Don't wait until a crisis has occurred to put changes into effect.  I am  asking that those who work for agencies and facilities remember that the people they serve deserve to be treated  with dignity and respect. Those in charge should ask themselves,, Is this how I'd want to live? Is this how I'd want to be treated? If one person in charge would stop and ask themselves these questions, it would be be the first step towards a cycle of change.







Thursday, August 14, 2014

HAPPY BIRTHDAY LUCIE

Lucie will be fifteen years old  on August 18th. Her presence has helped me get through some of the most difficult times in my life.  In honor of her birthday, please take a moment to read my first diva blog post. It expresses what Lucie means to me. 

http://confessionsofadisableddiva.blogspot.com/search?q=for+the+love


Thursday, July 24, 2014

STRONG ENOUGH

I saw this quote on Facebook.   “You have to accept whatever comes, and the only important thing is that you meet it with the best you have to give.”― Eleanor Roosevelt

I saw a skilled nursing facility last week. Actually, it's the rehab section of a facility It is home to long term care residents in their thirties, forties and and fifties  Seeing it made it all so real to me. There were people who use power chairs, as I do, with various disabilities.The afternoon we visited, a jewelry vendor was there and residents were looking at what the vendor had to offer.  The young woman giving us tour was upbeat. We're a lively bunch," she said. She went on talking about activities such as movie night and bridge games, I told her that I was a write and I spend the majority of my time on my computer. That books, writing and being able to still volunteer at my library were the things that mattered the most to me.

There was no carpeting on the floors, except the lobby.. Walking past rooms.you could smell the faint odor  of urine  I was told later that some residents can't flush or forget to flush the toilet. The room itself looked like a hospital room complete with hospital furnishings. I was told I could bring my furniture, everything except my bed. The bathroom had no door on it, just a curtain because it's easier for the staff when they are assisting residents. I was upset and depressed when I left the facility.

I have a little time left in my house. I pray a better option comes along. I will stay in my house until the last possible day. I don't want to run out of money, but I also don't want to give up a normal life any sooner than Is absolutely necessary .I appreciate my family's assistance over the past four years. It has been invaluable to me. I hope they will continue to support me.

We all face challenges in life. We must be strong enough to face them. We must give them "the best we have to give." 








Monday, June 30, 2014

INDEPENDENCE IS ALL IN YOUR MIND

In a few months, unless there is a miracle  I will no longer be able to stay in my home. It is costly to have home care and my funds have been depleted. This week, I begin the process  of looking into skilled nursing facilities. I am grateful for my family's help to find the right place. I don't want to go on government assistance and end up in a Medicaid bed in a facility.

What scares me the most, other than leaving the only home I have ever known, is losing my independence and not being able to get out and  do the things I enjoy doing. Losing the ability to make decisions for myself.

I am dependent on others for assistance with almost every aspect of daily living. Yet, I think of myself as an independent person. I was talking to a friend last week, saying how I feared losing my independence if I went to a facility. My friend told me that independence is a state of mind. It's how you conduct yourself and how self assured you are. .If you act in a way that let's those around you know you deserve to be treated with respect and dignity, you will be. Independence should not be measured in terms of how much assistance someone needs, but rather, in how they think ,and their ability to make well thought out decisions. I have difficulty making decisions sometimes, but I am working on  sticking to a decision once I have made it.

There is so much I want to do. I want to still blog and try to help others through my writing. I would like to still contribute to the community by volunteering again. 

I must try to remember I am still the same person,. The only thing that's changed is my address. 








Saturday, June 28, 2014

D2K, WHAT A NIGHT

May 20th is Cher's birthday. However, the date has an additional significance for me now. It is the day I sprained my knee. I heard something crack in my knee as my caregiver was putting me back in my chair. Between the loud crack I heard, and the pain I felt, whatever had happened, I knew it wasn't good.

Perhaps you'll say my priorities weren't in the right place. Yes, I was worried about my knee, but I was also worried that the diagnosis would keep me from seeing Cher's Dressed to Kill Tour on June 4th. I'd had my my tickets since last October. I didn't want to miss a concert I had been waiting over nine months to see.

Thankfully, my knee was not broken. It was just badly sprained. Cher and D2K was still on.

 I'd been tweeting Cher and her friend Paulette daily in hopes of either meeting Paulette and or Cher.  I also have a friend on twitter who is friends with Paulette. I got the surprise of my life when I received an email asking the location of our seats. Every diehard Cher fan knows that if Paulette asks where you're sitting, it either means you are meeting one or both of them.

The weeks passed. My knee hurt, but I knew nothing would keep me from seeing Cher.

The morning .of the concert, I received an email from my friend on Twitter saying Paulette would definitely come by and say hello to us. Since I was on bed rest  until it was time to get ready for the concert, I called my friend, JoAnn who was going to the concert with me. "Paulette's coming by to see us," I told her. I still had hopes of meeting Cher too. Whatever happened, I knew it would be a night to remember. I sent JoAnn on a mission to get gifts for Cher.

Before I knew it we were on our way to the concert venue. It was exciting to see all the fans waiting to go inside. We found our seats and had only been there a few minutes when someone said, "Hi, are you Joanne? I'm Paulette." JoAnn had gotten a beautiful bouquet of white roses and pink lilies as well as a box of chocolate truffles because she'd read online that white roses and lilies are Cher's favorite flowers.. She likes chocolate too. Paulette told me Cher was busy backstage and a meet and greet was not possible that night. Paulette said Cher knew about me and that she would take my gifts backstage to her. We took pictures and then it was time for Paulette to go. She stopped to talk with other fans. As she was leaving.I heard her say, "Bye Joanne."

Cyndi Lauper sang many songs from her She's So Unusual album. The album is thirty years old this year. Cyndi really connects with the audience. What impressed me most was how she went out into the audience, shaking hands with as many people as she could.  Cher could not have chosen a better performer to open for her.

Cher Was amazing. From costumes, to songs, to special effects, Cher did not disappoint. I loved the entire show. I especially liked  the circus introduction to Gypsies, Tramps and Thieves. Cher singing The Beat Goes On and I Got  You Babe With Sonny. Watching her sing with a video of Sonny was very moving. Seeing her suspended and fly over the audience while singing I Hope You Find It was awesome.

Several days later, I received an email from Paulette saying how much Cher liked my gifts. I look at that email now and still can't believe it.

Thank you Jill, Paulette, JoAnn, Gary and Cher for giving me a night I'll never forget.








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Sunday, May 11, 2014

MY FURRY CHILD


I may not have any children, but yesterday I knew what it must feel like to be a mother I went out for the afternoon. Because Lucie is old and sick, and I was going to be gone a long time, I left Lucie with my neighbor. My neighbor loves Lucie and Lucie loves her. It’s not the first time I have done this so, I knew she’d be okay. 
Periodically, during the afternoon, I wondered how Lucie was doing. Was she barking too much? Was she crying to come home as she’d done in the  past? Was she having accidents in my neighbor's house? I tried to push these questions from my mind, but they kept coming back.
I couldn't wait to see Lucie. We even went to eat at a restaurant close to my house so we'd get home faster. When we got to my neighbor's house to pick Lucie up, my neighbor said she'd bring her over In a little while. It got later and later and my neighbor still had not brought Lucie home.

Finally, my neighbor called to ask if I wanted her to keep Lucie overnight. She knows my caregivers are not required to care for Lucie and my neighbor wanted to give my caregiver a break. I was not sure about this as Lucie had never been away from home overnight, but I agreed.

We had a thunderstorm during the night. I worried about Lucie because she's afraid of storms.

My neighbor called this morning. Lucie had done none of the things I had worried about. She had been the perfect dog.

Lucie is home now. Asleep on the floor next to my bed. Her presence keeping me company as I type this.

I expected her to want to jump into my lap, so happy to be home, but she barely acknowledged me. Perhaps it was because my neighbor had dog treats.

After my neighbor left, Lucie went to her spot in my room. She knew she was home.

I  realized yesterday was a lot harder on me than it was on Lucie. I was the one who was a wreck. She was fine. I know what's it's like to be a mother because a mother worries and wants their child to be able to handle being away from home. It doesn't matter if their child has two legs or is covered in fur. the feeling is still the same.

HAPPY MOTHER'S DAY.

 
 
 
 
 
 
 

Thursday, May 8, 2014

MY BUCKET LIST

I saw this story on the talk show KATIE this morning. http://katiecouric.com/2014/05/07/bens-bucket-list/ It's the story of nine-year-old Ben Pierce who is gradually losing his sight. They don't know when, but they know it's coming. His parents are trying to give  him as many experiences as they can, so that when the inevitable happens, Ben will always be able to see the experiences through his mind's eye. Katie Couric gave him a fun filled day in New York City as well as other surprises/

This story got me thinking. If we knew we were going to lose our sight or were told we had a terminal illness, what would we want to do or see? What would be important to us?

I started a bucket list once. There were only three things on it.

1. To have an article published in a magazine
2. To visit California again
3. To see Cher in concert again

My list isn't very long mainly because everything I thought of seemed inconsequential.


i depend on others all the time. so,  I think a good bucket list entry for me would be to try and help others in some way.

And because love dogs, I'd ,want to do something for all homeless, abused and neglected dogs. I would love to volunteer at the Humane Society because i can't give money, but i can give love, and that just as important.

Writing a bucket list motivates you to do things you may not have thought about doing before. Or, do something you have always wanted to do. It makes you think about what's really important to you.

I hope that Ben Pierce gets to do as many things as he can before his vision fails . He'll have plenty of pictures to view in his mind's eye. Plenty of memories.

 What's on your bucket list?






 


Tuesday, May 6, 2014

MY ADVENTURES WITH EMAIL

I like to be stay .signed in to my email account. As you know, I only type with one finger and staying signed in to my 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 sign in again, but that was no problem, I would just re-enter my password and every was fine. Until the past month.

Last 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, finally changed my password and thought everything would be fine.

It may not seem like much, but I enjoy composing and sending email on my Kindle. True, I type slower and have proofread really well because I make more mistakes, but I still 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 and eventually got lock out of my own account. Twice. I guess they thought I was trying to hack into my own account. 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, but they were no help.

I have switched email providers and things are fine with my Kindle and email. Now, 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 probably should have titled this post My Adventures With computers . I love \my laptop. it lets me keep 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 our the window.

I learned patience this last week. I have tremendous respect for those who can diagnose computer problems and fix them/

So, am I the only one who has these problems? if not, share your story with me. I'll feel so much better. 



Monday, April 28, 2014

THE BEST THEY HAVE

Last week I had a new caregiver for two days. This is always stressful for me as 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 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.

I learned a valuable lesson last week. 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.

Tuesday, April 15, 2014

A LONG, HARD ROAD

If you have read my blog from the beginning you know that I attended college and graduate school well before the passage of The Americans With Disabilities Act. When I started Meamec Community College, in nineteen seventy-six , offices for the disabled didn't exist. There was one man who was a counselor for the disabled. I went to him for awhile.  After I got into the Human Services Program, I no longer needed his assistance. I was responsible for taking my own 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 Bachelors 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. There wasn't a nurse available, so 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. 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 my Masters at Wash U. The credit counted for both degrees.

This post is titled A Long Hard Road. I wouldn't say at the first two schools the road was that hard, frustrating at times maybe, but not hard. The title definitely fits for Wash U. The school made it clear they didn't want me there. 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 that could actually get to the first floor from inside the door. Changes 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 and I was unable to go there as a result. 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, especially that last year. 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.

Some of this I may have written before. 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 has made 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.

It was a long, hard road, but I made it.

Monday, April 7, 2014

A DREAM IS A WISH FROM YOUR HEART

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. A good friend 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.


I have told you my "silly" dream. I'd like to hear some of yours. Leave me a comment here, Facebook or Twitter.



















Friday, March 21, 2014

GREEN IS MY FAVORITE COLOR

Tuesday March 26th is National Cerebral Palsy Awareness Day.I am re-posting my entry from last year as a reminder to all of you show your support of children and adults  with CP, not just next Tuesday, but everyday. Make green your favorite color too. 

http://confessionsofadisableddiva.blogspot.com/2013/03/cerebral-palsy-awareness-day.html

Saturday, March 15, 2014

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 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 to the meeting. 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 just 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 get upstairs and 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 house 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
  

Thursday, March 6, 2014

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 SPORTSCENTER with the goal of,one day being 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 

I am proud of 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. That's  what a friend of mine did when they heard about this story.  

Come on everyone. Tweet.


Saturday, February 15, 2014

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 everyday 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.  

In an effort 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 a valued member of the class.

You don't have to agree with me. .I was saddened by the fact that a 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!













Friday, January 31, 2014

TO COMMEMORATE THE Day

February 1, 2013 ny brother Bill passed away. I have thought a lot about him throughout the year and especially this past week. I still can't believe he is gone. I  wrote the following post on the day of his memorial service last year. I am reposting it as it is the best way I can think of to honor him and mark the one year anniversary of his passing.


Saturday, January 25, 2014

MY JOURNEY

My degree is in Social Work. If anyone had told me, when I was in college, that I would end up being the author of a children's book, a blogger as well as a columnist for a local newspaper, I would not have believed them. 

I wanted to be a Medical Social Worker. In graduate school, I did an internship at a local children's hospital. The hospital was sharing a social worker with another children's hospital that served children with disabilities.  My supervisor hoped I would be offered the position after graduation. Sadly, I had no work experience and since the hospital wanted someone with two years work experience, I knew I wouldn't get the job.

When it became clear to me that a position in social work would not be in my future I began volunteering in the data processing lab at the community college I had attended. Volunteering in the lab led to my developing classes in Word and Windows that I taught, on an individualized basis (part time) through the Continuing Education Department. I retired in 2005.

While I was teaching I audited a class in creative writing. I enjoyed the class and decided I wanted to try to write a romance novel in which the heroine had a disability and used a power chair. I was having difficulty finishing the novel. It just wasn't coming together. A friend, who taught preschool, asked if I would write children's stories for her class.  I began writing my Bianca Bear stories and, in 2010, my book The Busy World of Bianca Bear was published.

I began blogging by writing a blog featuring more of my Bianca stories. A year and a half ago, I started a second blog called Confessions of a Disabled Diva which focuses on raising disability awareness.

 I have been a contributor to the West End Word online for a year now. I am very pleased that my columns will now run monthly in their print edition as well. I will continue to raise awareness regarding the issues people with disabilities face  I hope you'll want to continue on my journey with me.

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Monday, January 13, 2014

I WANNA WATCH TV

Several weeks ago, I received a recorded phone message alerting me that my cable company was going to all digital programming effective January 14th. This meant that I would need a second digital box for the small TV in my kitchen. The message went on to explain my options for getting additional boxes. They could either (a) mail the box and installation kit to me and I would be responsible for installing the box or (b) I could pick a box up from one of their offices. I knew neither option would work for me.

I called the next morning. After listening to the friendly automated voice for several minutes, and getting nowhere, I was finally connected to an agent. The agent went through the same options I had heard the night before. I explained that I was disabled and was unable to install the box myself I told the agent I thought the installation should be free since it was something the company was forcing me to do. After several minutes of discussion the agent said they would make a notation and I would receive a free box for one year, free installation by a technician and a replacement remote for my larger TV. I was told to call to schedule the installation appointment.

Last week, I called to schedule the appointment. I told the agent what I had been promised the previous week. The second agent informed me that installation was thirty dollars.  The only way to get free installation was to have six or more boxes installed and a replacement remote would cost eleven dollars . I was very angry. (Last fall the company tried to charge me forty-five dollars when a technician had to come out because the cable wire fell due to wind. I refused to pay and the charge was waived.) It was finally agreed upon that I'd pay the one time thirty dollar installation charge.  I would get two new boxes and remotes. One box free for a year. Getting two new boxes meant I didn't have to pay for a replacement remote.

The technician cane out this morning. The technician had a problem with the installation and had to call the office for assistance.  Everything's working now, but it took a while. 

Not everyone is capable of picking up a kit and doing an installation. Even technicians have difficulty.  When someone is disabled or elderly and on a fixed income, I think charges for a tech to come out should be waived. TV providers charge enough. Watching TV may be the only enjoyment some people have.  Don't make it harder for them to get it.



Sunday, January 5, 2014

MY EDITORIAL

You may remember, back in November, I submitted an op-ed piece to the St.  Louis Post Dispatch, on the Cost of Living Adjustment for 2014. Last week, it was published.  If you'd like to read it click on the link below.

http://www.stltoday.com/news/opinion/columns/higher-increases-for-social-security-are-much-needed/article_36b81c48-c746-5ecb-8518-a3a68a8397cc.html

Many of my blog posts have the recurring theme of never giving of on your goals and dreams. The publication of my editorial signifies that I'm one step closer to achieving my goal of becoming a freelance writer. Never give up. You can achieve your goals.

Wednesday, January 1, 2014

HOPE

My wish for you in 2014 is that you have a year filled with hope and promise.  Hope that you will succeed in most, if not all, of your endeavors.and those that you don't, succeed at, you learn from. I hope the year is a year filled with more positives for you than negatives. Don't listen to people who focus on the things you can't do.  Focus on what you can do. Do your best, keep trying. Never give up hope that you will be successful in life.  You may not have a lot of money, but if you treat others with dignity, respect and are never judgmental, you will have achieved success more valuable than monetary wealth.

I hope the year holds the promise of good things for you. Never give up hope.  Never give up on your dreams. 

HAPPY NEW YEAR EVERYONE!