3 DAYS AND COUNTING

September 5th, if things stay on schedule,  I will find out whether or not I have been approved for community-based housing.

I am both excited and scared. I am excited because I will be able to roll out of this facility. I never believed I belonged here. If I am approved that means The State of Missouri does not think that I belong here either. That will be extremely gratifying to me.

If I am approved I will have to manage on my own. I hope the state will assist in moving my things. I will also need to learn to live on very little income. That is what scares the most. I have to make this work. If it doesn't, I will end up back in a facility with any chance of getting out lost to me forever.

I know living in community-based housing will be better than living in a facility. Instead of having to share aides with thirty-nine other people the maximum number of people I will have to share an aide with is four. I am sure that I will not have to worry about missing my transportation if I  want to go out. I will not have to worry about wetting the bed.

I will not have to worry that I will have a male aide My case manager has documented my preference.

I am concerned about how everything will come together. The main thing I am concerned about is not having Wi-Fi. If I lost the ability to write and access the internet I would not know what to do with myself.

I hope that I have lots of visitors. I hope that my family has time to come visit me too.

Living in a facility has been the most difficult experience of my life. I have also learned a lot from the experience. I have learned to be more patient. I have learned that arguing will not get me anywhere. It makes people not want to help me. It gave me a negative reputation here. I am grateful for the lessons I have learned

I try not to think about how I will feel If I am not approved for placement.As I said in a previous post, If I am forced to have a roommate I will not survive.

Thank you, family, and friends on Facebook and Twitter. I would also like to thank the staff here who are rooting for me. Your support and/encouragement mean more than I can say.

 Please continue to send good vibes. Please continue to pray for me. 3 days and counting...

Stay tuned.

IT'S GONNA BE A GREAT DAY

The past, two mornings. I woke up. I pushed my call light. Someone came

I didn't have to begin calling ' Can someone help me, please? I don't want to have an accident. I am about to wet the bed." I didn't hear a nurse getting morning meds ready outside my room. I did not have to wonder why she did not ask someone to help me. Or, why she did not help me herself. I pushed my call light. Someone came to assist me.

One morning I missed breakfast because an aide left me in bed on my shower day. She returned after half an hour. By the time I got my shower They were cleaning up in the dining room by the time I got there. The staff got me my cereal, yogurt, and raisins. I ate breakfast. They cleaned up around me. Today was my shower day. I pushed my call light button. Two people came. They helped me to the bathroom. My aide got me in the shower. I was up, dressed, and ready to begin my day. I had plenty of time before breakfast started.

Being helped the past two mornings so I didn't have an accident is a HUGE deal to me. My aides, the past two mornings, have been kind and understanding. They did not just walk past my door.  They did not come into my room, turn off my call light and tell why they could not help me. They did not make me beg for help.

There are good people here. People who care. I want to thank them for helping me. I hope they know what a difference they made in my day.

A WEIGHTY ISSUE

My mother took care of me until she was eighty-seven years old. The reason she was able to do that was that I kept my weight down.  We had sweets and chips in the house. I just watched how often I ate them.

When I arrived at this facility I weighed approximately ninety--seven pounds. Everyone kept telling me to eat. I was underweight. It took a while until I was able to get above one hundred pounds. I was proud of being able to keep my weight down.
I am ashamed to admit that I looked down on other residents here because of the foods they chose.to eat. Didn't they know that all those carbs and sweets they were consuming would cause them to gain weight Didn't they know that if they gained weight it would be more difficult for the aides to assist them?  Didn;t they care about their health? I couldn't understand.

I understand now why residents eat the way they do. I understand because I am eating more too, specifically, desserts. Sweets make me feel better. Eating them helps me cope with stress better. I still try to eat healthily.  I eat mainly salad and fruit. The only difference is that I don't deny myself dessert anymore. If I want something sweet, I eat it. My weight (so far) is still okay.

One of the side effects of the anti-anxiety medication I am taking is weight gain. Now, I am stressing about medication that is supposed to help alleviate stress. It is a vicious cycle!

I know I cannot eat this way forever. I will just enjoy it while I can. I hope someday I will be living somewhere that is less stressful.

Until then...

Does anyone have any cake?

MAYBE SOMEDAY

Ableism is defined as discriminating against a person with a disability in favor of an able-bodied person 

Inspiration Porn is defined as being inspired by someone just because they have a disability. When I was young these terms did not exist.  The first time I heard them I was confused. I did not understand what the terms meant.

When I was growing up I never thought about being proud of my disability. I was disabled. I had CP. I wasn't proud of it. I wasn't ashamed of it. It was part of me. It wasn't who I was. I knew that, inside, I was just like everyone else. The difficult part was getting everyone around me to see me that way.

Before I entered The George Warren Brown School of Social Work my mother was told, by The Dean of Admissions, that the school did not want me. .GWB had to accept me because I met the qualifications for admission. My first advisor  told me that he "would rather see me fail than help me."  I didn't make a big deal of it.  I got rid of that advisor. I was determined to prove the school wrong. I did.

I have been told twice, by The Office of Vocational Rehabilitation, that I am unemployable. Again, I am determined to prove that wrong.

I guess I view things differently than the majority of disabled people. The ADA has opened many doors for people with disabilities.   However, a part of me thinks it is sad that people with disabilities won't have the experiences I did in seeking to get an education and find employment. Those experiences  made me a stronger person,

I have been patted on the head, both literally and figuratively, more times than I can count. I have been spoken to condescendingly and ignored. It is not right, but when you are disabled, (sometimes). you have to deal with it.

Ableism and Inspiration Porn have always existed. The only difference today is now they have names and definitions. I don't think that I will ever truly be thought of as equal by society.  There will always be people who will view me as different. In a  perfect world that wouldn't be the case. The world isn't perfect. I am different. I need services and assistance that others don't. That's not a bad thing. That's just how it is.

I try to live the best life I can. I keep pushing forward toward my goals. I continue to advocate and raise awareness through my writing.  

Maybe someday the world will be perfect. Maybe someday we won't need terms like Ableism and Inspiration Porn.  Maybe someday everyone will look at me and not see my wheelchair. Maybe someday everyone will really see me.  Maybe someday.











  

BELIEVE

I had a care plan meeting with the staff here. My case manager was also present. She asked about my needs.  She asked if the staff thought I would be able to live in community-based housing. All agreed that, with the proper supports in place, I would.

I had to answer eight pages of questions. This was an assessment of my skills and abilities. A few of the  questions were "What is bleach used for?"  "How would I find a job?"  I was asked to calculate the correct change, in my head, after a purchase had been made. (The one thing I could not do.) Except for calculating change, I think I did well.

My case manager returned two days later. She asked me some more in-depth questions. Gathering information for my plan. My plan must be submitted and approved. She hopes it will be approved before she retires at the end of September. Another case manager will take my case at that time. My profile will be sent out to various agencies/. Hopefully, a spot in community housing will be found for me.

She asked what the one thing was that I would like to do if I am assimilated back into the community. My answer was. ""I know I won't have much money, but  I'd like to go out to dinner,"  I  told her I wanted to have some type of part-time so I would have a little extra money. She asked about my hopes and dreams. My hope is to be released from this facility. My dream is to be a paid freelance writer. All this really means is that I just want to feel like myself again. I haven't for a very long time.

I have to keep my eye on the prize. I have to stay positive. I have to keep moving forward. I have to believe.

CELEBRATING A MILESTONE

Five years ago, today, on July 7, 2012,, I wrote my first Confessions of a Disabled Diva blog post. I didn't remember the date until it showed up in my news feed on Facebook.  Five years, 190 posts. This blog began as an experiment. I wanted to see if I could write something other than children's stories. I wanted to see if I could write a blog that adults would want to read.

My first post was about Lucie. I knew writing about her would be easy for me. Everyone knew how much she meant to me. She meant even more after my mom passed away. I wanted people to know just how special Lucie was.  I rolled up to my desk and began typing. When the post was finished, I'd written a post titled "For the Love of Lucie." https://confessionsofadisableddiva.blogspot.com/2012/07/for-love-of-lucie.html The post described in detail what a doggie diva Lucie was. Lucie and I went through some tough times together. her companionship was invaluable. I think of her every day.

I kept writing. I wrote about everything from struggles with caregivers to Cher. I wanted people to know what my life was like. I wanted people to know what it is like to be dependent on other people for almost everything. I always tried to end with a positive message. I always tried to give my readers something to think about.

I  have always been an advocate for people with disabilities. In 2014, when my life changed forever, I became an advocate for people in long-term care communities as well. I began blogging about how conditions were here.  How understaffing effects resident care. People need to know what life is like in a facility on a daily basis.  How will conditions ever improve if people aren't made aware of the issues residents face? Changes are happening at this facility. I hope the changes will be positives ones. I hope the changes improve the quality of life for those of us who live here.

I am trying to find an alternative living situation. Cerebral Palsy is a developmental disability. I must work with the Department of Mental Health. I have reactivated my case with them. I will be getting a case manager to assist me. Whatever happens, I will take my readers on the journey with me.

Writing this blog is therapeutic for me. If I write a post and publish it, I feel better because my voice is being heard.

Five years. 191 posts now. I hope my message of hope and perseverance has made a difference.

Thank you to those of you who have supported this blog for the past five years. Here's to five more.

IT'S WHAT GOD CALLED HER TO DO

Sondra Barker is the new assistant activities director here. She believes in doing "whatever God calls her to do."

Besides raising her own threes children, Sondra raised her nephew from the age of six until he was twenty. She is now raising her fourteen-year-old granddaughter as well as her ten-year-old grandson. To ensures that her grandson would not remain a ward of the state, Sondra, and her husband took foster parenting classes.

They learned CPR and their home was inspected to make sure it was safe. Even their pets were scrutinized.  Sondra and husband were required to make sure that their pet's vaccinations were up to date. About a year after they had become his foster parents, they petitioned the court to become his legal guardians. The judge praised Sondra for taking such good care of her grandson. They were granted full custody. Because of his grandmother's love and support, her grandson will never have to worry that he will become a ward of the state again.

Sondra credits two sisters, Effie and Elsie, for inspiring her interest and compassion for the elderly. They were her babysitters when she was eight or nine years old. Effie and Elsie taught Sondra to love Lawrence Welk. I have a feeling that her memories of Lawerence Welk bring back fond memories of Effie and Elsie too.

Sondra tells the elderly, "If you have a story to tell, tell it to a young person."She tells young people, "Listen to an older person. Listen to their stories. You can learn a lot."

Sondra loves to sit and offer comfort to people when they are passing away. She will hold their hand or sing to them if they are afraid. Sondra believes there are two times when we are the closest to heaven. When we are born and when we are dying. Both times Jesus and the angels are in the room with us.  Once, When she was doing nails at a facility, a lady asked to come to her room and do her nails. By the time Sondra got there, the lady had died. Sondra still did the lady's nails because that was her last request. She received an award for honoring the women's request.

When Sondra was a nurse's aide, in the sixties, she did what she was told to do. She didn't complain. She had compassion for the people that she cared for.

Sondra has worked at a number of facilities in the activities department. When she was a director she was sent to school. She has her chauffer's license. She is also a deputy. Sondra can register people to vote.

Before taking the position of assistant activities director here, Sondra had been a lunch lady at a school near her home. She liked that job very much. She applied for the position of activities director here She was offered the assistant director position. When she walked into this facility she knew that it was where God wanted her to be.

I wish there were more people like Sondra working at this facility. I wish there more people like Sondra in the world. She the most selfless and compassionate person I have ever met. She makes resident's lives better.by doing what God calls her to do.