Saturday, December 31, 2016

IT'S A NEW YEAR , MAKE IT A GOOD YEAR

2016 is drawing to a close.We lost many talented people in the entertainment and music industry. Many police officers lost their lives in the line of duty. Many in our country were dissatisfied with the outcome of the presidential election. Instead of uniting, we were divided as a country. It made me sad.

I have been trying to work on changing my behavior. I am a very sensitive and emotional person. I have been, and am continuing to, work on controlling the way I react to people and situations. I try not fly off the handle.   I still make mistakes/. I am not perfect. I always apologize. All I can do is keep trying. I know I am improving.

With the help of The Starkloff  Disability Institute, I am working toward getting some kind of writing job that I can do from the facility. This is the first step in my plan to find a new living situation/ My resume is now completed. I may be physically dependent on other people, but, I am a proud person. I know I can't earn much, but I need have a job to feel productive and improve my self-worth.

 I learned that I angered the individual .who forced me from my house. It's true, I yelled, begged and pleaded to remain in my house. If by some remote chance you are reading this, please accept my apology. My whole life was taken away. I am sure, had you been in my position, you would have reacted the same way.

I keep busy. I am even learning Spanish online. People here just exist. I cannot do that. I want a life. For the first time in a very long time, I have hope that positive changes will happen for me in 2017.

I hope the country and the world will become more united in 2017. I pray that the incoming administration does not cut funding to programs needed by so many.

Thank you to my family for their continued love and support this past year. I love you all very much. To all of my readers, I hope the coming year brings many positive changes to your life. Thank you for taking life's journey with me.

HAPPY NEW YEAR. Make it a good year.



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Thursday, December 22, 2016

WE'RE ALL MISFITS

Did you ever stop to think about the lyrics of Rudolph The Red-Nosed Reindeer?  I never did. I just sang along with the the catchy little tune. I never gave the words a second thought. When I watched the television adaptation, that premiered in 1964, I didn't think about the significance of  Santa stopping in the Land of Misfit Toys  I didn't think about him giving the toys to children so they could love them.  I was  a kid.  It was an animated Christmas special. Santa was in it. That was all that mattered. 

I did at little research on Wikipedia. That is when I realized what an important message the song and story have.
 https://en.wikipedia.org/wiki/Rudolph_the_Red-Nosed_Reindeer

Delivering toys would not have possible without Rudolph. It was his blinking red noise that guided Santa's sleigh through the fog that Christmas Eve. The same Rudolph the other reindeer laughed at, called names and refused to play with. The reindeer with the shiny red nose that blinked saved Christmas.

Donner trained him. Santa believed in him. Santa gave a purpose. Santa celebrated the fact that Rudolph was different.  Santa looked past his differences and focused on his abilities..

Just like those misfit toys we are flawed and imperfect. It is those flaws and imperfections that make us who we are. We don't always have to fit in. It is okay to stand out. Be proud of who you are.

Rudolph is a great story for children with disabilities. Santa believed in Rudolph. He saw his potential, not his limitations.

Anything is possible. Like Santa in Rudolph,  you just have believe. Isn't that what Christmas is all about?










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Sunday, December 11, 2016

MY CHRISTMAS WISHES

When I was young, Christmas was about Santa, toys and decorations.Mostly decorations. 
I would beg my mom to let me transform our house into a winter wonderland. We had every Christmas decoration known to mankind,. Well, it seemed that way anyway. Closets were bursting. My mom finally had to tell people to stop giving me decorations because she had no more room to store them.

My brother put lights on the outside too.  No inflatable snowman or Santa for us. We had the big heavy plastic ones from when were were little. My brother worked hard on the house. When he was finished, ours was by far,the the best decorated house on our street.  Christmas was an exciting and magical time when my mom was alive.  My favorite  time of year. 

Christmas in a facility is just another day. Many residents have told me that. It is so important to have visitors not only during the holidays, but all through the year.. My wish for all the residents in long term care is that they may have lots of visitors  throughout the year.. No one should be forgotten. Everyone should have someone who cares about them. 

It's been almost seven  years since my mom died. I have not always treated my family with the respect they deserve. All I want this Christmas is for them to forgive me.  
I am not perfect. I screw up. I keep trying. I am becoming a better person. I appreciate everything that they have done and continue to do.for me. .I love all of them very much.  I am sorry.

My second wish is for the gift of hope.  Hope that I will be given a chance to live outside of this facility. I look forward to working with Paraquad and Starkloff Disability Institues to make my goal a reality.. If given the chance, I won't blow it this time.

My wish for the world is that someday, we are able to accept each other's differences.. That we live in peace.

My wishes are not things you can wrap with a bow.-They are the most important things I have ever asked for. 

I hope all of your wishes are granted this Holiday Season.







Wednesday, November 30, 2016

LAURIE BAKER'S OUTTAKES ARE THE BEST TAKES

Laurie Baker grew up watching Days of Our Lives.  She was just a fan like millions of others. Now, though, she is not only a fan, she is a reporter. Her internet radio show, Outtakes Interviews, is a hit with soap fans.  She has interviewed stars from all four soaps, but Days is still her first love. She gets the answers to questions that fans are dying to know the answers to. 

Laurie has attended major soap events like the 50th anniversary party of Days of  Our Lives. Her videos and photos of the gala were amazing.  I felt like I had attended the event with her.

I wanted to know more about Laurie and Outtakes Interviews. I emailed her some questions. Thank you Laurie for taking the time to answer them


What is your professional background?  Were you a journalist/ reporter?
I have not gone to formal journalism school…but I participated in a lot of writing and acting all throughout high school, college and my early years in New York City.  I think those experiences taught me quite a bit.  And I am still learning all the time.
How long how you been a soap opera fan?
I grew up watching DAYS OF OUR LIVES with my family.  But I really fell in love with the show around 1982 with Tony/Renee, Marlena/Roman and Liz/Neil.  DAYS was and is my main soap opera.  With the internet, it became easier for me to watch the other soaps.  In 2009, I began watching all the ones that were still around.  And now every televised soap has something about it that I’m in love.
Where did the idea for your outtakes interviews come from?  The concept is a unique one. you have combined your interest in soaps with reporting.
As the internet kept growing, there were websites that came along that were very inspiring to me.  “Daytime Confidential” and “We Love Soaps” were two of them that really would write good articles, have wonderful podcasts and do great interviews with soap opera actors.  And I said to myself, “I would love to do that.”  I am also a fan of “Inside the Actor’s Studio”.  I love to find out what makes actors tick…and so many soap opera actors are brushed off…although that form of acting under such high pressure with little rehearsal time is probably the hardest type of acting there is.  And I am interested in finding out their real insight into the characters they play.  I don’t particularly care for fluffy questions.  And I rarely ask about what will happen next on the soap opera because the actor would only get in trouble by answering anyway
Laurie interviewing James Reynolds and Bryan Dattilo from Days
  
Who was your first outtakes interview subject? Who has been your most memorable interview subject/experience?
James Reynolds (Abe from DAYS OF OUR LIVES) was the first actor to give me a yes.  We did an interview about a play he was doing at Cape May Stage in New Jersey.  I was nervous…and there were some tech problems with the first radio show, but James was gracious and wonderful about it.
It is hard to pick the most memorable because there have been a lot of interviews I’ve cherished.  The show with the all-time highest listen count I did was with Eric Martsolf (Brady DAYS) and Christian LeBlanc (THE YOUNG AND THE RESTLESS) where they were promoting a Christmas comedy event that they were doing together.  They were so wild and crazy!  It was hysterical.  There are some who were on my wish list from day one…and when I got them, it was terrific!  Matthew Ashford, Patsy Pease, Charles Shaughnessy, Thaao Penghlis and John deLancie (yes, all DAYS actors!) were a few that come to mind.
How do stars react when they learn you want to interview them?
Usually, it is either “Sure, let’s do it”; or no reply at all.
Have you ever had a star react negatively?
No.
Is there anyone you are dying to interview but haven't yet? 
Joseph Mascolo, Michael T. Weiss, Charlotte Ross, Roger Howarth, Kassie dePaiva and Peter Bergman.  I am sure there are more that I am forgetting!
What's it like to cover major events like day of days or days 50th anniversary?
The DAYS 50th Anniversary Gala was surreal.  It was like a dream where every actor you ever watched on the show was right there.  And I was like…do I want to talk to this actor who I’ve loved forever on my right?  Or this actor who I’ve loved forever on my left?  And meanwhile, Stephen Nichols, Ari Zucker, Eric Martsolf and others were all singing these terrific songs on stage.  So I was trying to film some of that…but I also wanted to socialize at the same time.  Not complaining…but truly a situation where there was too much of a good thing!
With doing interviews at Day of DAYS, I just try to focus on my love of DAYS OF OUR LIVES and the actors/characters involved.  And I try to go for questions that I am guessing fans would want to know about specifically for each character/actor.  Not anything too general or cookie cutter.  In the press room, they bring in two actors at a time to interview every ten minutes; so you have to be prepared and ready to go at a moment’s notice.
How long does the editing process take?
It truly depends on the interview itself.  Sometimes with audio, there are technical problems with volume or static that have to be edited out.  Video itself does not take as long, except for montages, etc.
What are your future plans for outtakes interviews?
I would love to do more interviews on site and on camera as opposed to long distance and audio.  But that is a matter of opportunity more than anything else.  Mainly it is just a matter of persistence, continuing to look for good guests and building up more audience.  I just hope to keep the momentum going!

Laurie with DAYS ultimate super couple, Stephen Nichols and Mary Beth  Evans


Links:
outtakesinterviews.com – Website
@LauriesOutTakes – Twitter
OutTakes Interviews on Blogtalkradio – Facebook page
outtakesinterviews -- Instagram



Monday, November 21, 2016

I AM THANKFUL FOR...

This past weekend was one of the worst weekends I have had in the two years I have been here. I won't go into detail, but under staffing, as I have said before, is a major problem here. Aides don't show u[. This leaves the staff that is here scrambling to fill the void. Or, aides don't come in on time. Either way, this leaves just one aide on the floor. If you are not a resident in that aide's assigned area, most of the time, they will not help you.

Sundays are the worst.  It is evident that a lot of aides are just here for a paycheck.  I know this is true because most of the time, when there are two aides helping me, they are taking to each about personal issues or other residents. Sometimes I wonder if they are paying any attention to me at all. I am not bashing this facility, I know the staff is doing the best they can to meet everyone's needs.

Wait. before you stop reading, there is a silver lining, I have an aide aide who is kind and caring. She does everything she can to make sure I get the best care. Here name is Tiffany. Tiffany works part time. When she is here I am up on time and all my needs are met. She is considerate. She treats me like a person. Tiffany listens.

I tried to nominate Tiffany for caregiver of the year, That is an award given by Voyce to a caregiver that goes above and beyond their care giving duties.  Unfortunately, I was too late. There is always next year.

Thursday is Thanksgiving. Tiffany is off. I am wondering who'll be here to help us. Will it be someone who is kind and listens like Tiffany? Or someone who is just doing their job for the money? I am praying for the former.

We need more aides here. We need more aides who listen and care. We need more aides like Tiffany.

This Thanksgiving I am thankful for Tiffany. She comes in on time. She does her job, She make life here better.

Wednesday, November 9, 2016

THE PEOPLE HAVE SPOKEN

Donald Trump will be the next president of the United States. I spent the majority of today wondering what that would mean for all of us with disabilities. And, yeah, I cried. 

My tears were born out of fear and frustration. Fear that funding will be cut on services people with disabilities need to allow them to live independently. /Frustration  that if the dire predictions of funds being come to fruition, I will never get out of here. Disabled Americans currently living independently, may be forced to live in nursing homes. .I don't wish my situation on anyone/ Disabled Americans deserve to keep the quality of life they now enjoy. 

If I lived in Great Britain, I would not have been forced out of my home. I have been told that in Great Britain, people with disabilities are treated with respect and dignity. They are treated just like everyone else. 

I have begun looking at my options. Currently, the state pays for just six hour of attendant care,  You can get up to eleven hours, but that's difficult/ People more disabled than I am are living in apartments with assistance. I deserve a chance too..I will continue to explore my options and learn how others manage  I don't need to be in a facility. After meeting other people with disabilities who live in the community, I believe that now more than ever. 

I am not angry. I am not going to rant and rave. The people made their choice. Now, we have to work together to make this country the best nation it can be.

I am just going remind the incoming administration that there are 57 million disabled Americans. We fight daily to be heard, to get the services we need and to be treated equally. 

All I am asking for is a chance. That all anyone with a disability wants. To be able to choose where and how we live, to be able to work so that we have a sense of self worth and can be proud of the contribution we are making.  

I have said all of this before. I pray funding is not cut. Cutting funding will mean that people with disabilities don't matter. But we do matter. I ask one thing of the incoming administration. Please don't forget about the disabled community.. Show us that we matter.


Friday, November 4, 2016

MY MICAH FOWLER INTERVIEW

Ever since the first episode of Speechless aired I have wanted to Interview Micah Fowler. Wait, that's
not entirely true. I should have said, ever since I wrote my first piece on the show last August, I have wanted to interview Micah Fowler.

I was amazed that there was going to be a show on network television about a family whose oldest son had cerebral palsy,  My disability. And, the show had actually hired an actor with CP to play the role of JJ. That was all I needed to hear. I knew I wanted to interview Micah for The Mac Wire.

I'd read an interview that two young men with CP had done with Micah for their blog. I emailed them to ask for suggestions on how to get my own interview. They said they tweeted Micah first.  Then they contacted his agents.

I tweeted Micah, telling him who I worked for and that I'd to interview him. I told him that I also had CP. It was hard saying all of that in 140 characters, but I did. I sent my tweet His reply came shortly after. "Contact my agents."

I wrote to his agents. I didn't get an answer. It took more than a month. Finally after Many emails from M.A. Cassata and me, we received a reply from a representative at ABC. I was asked to send five questions for Micah's consideration.

Okay, now I had the approval for an interview.What questions did I want to ask ? The Mac Wire is an entertainment website, not a disability site. I couldn't ask questions related to cerebral palsy or disability.

I asked him about the show, his fans, who he looked up to as an actor. his aspirations for the future and much more. . I hope you read my Mac Wire piece. If you missed it, check it out here. http://www.themacwire.com/tmw-exclusive-speechless-star-micah-fowler-on-acting-his-newfound-fame-and-the-importance-of-his-groundbreaking-role/ Micah gave very detailed answers.

Getting to interview Micah was important to me both personally and as a freelancer for The Mac Wire.  Anyone with a disability has challenges. Even though he has challenges, Micah is making a difference and hopefully, changing society's perception of people with disabilities. I wanted readers to get to know him as a person when they read my interview. I am extremely pleased because I think I accomplished my goal.

I am on a mission to make sure everyone watches Speechless at least once.You will find it to be extremely funny.  It is a show with themes everyone can relate to. Someone told me this week that it is one of the top five shows, I am happy that people are watching.Speechless. I hope more will tune in.

Thank you Micahfor taking the time to answer my questions. I wish you continued success. Thank you M.A. for not letting me give up on getting this interview.  It  was worth waiting for.



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Sunday, October 30, 2016

INCLUSION WORKS

October is National Disability Employment Awareness Month. The title of this post is this year's theme. There are approximately 57 million disabled Americans. We are the largest minority group.  

According to an article written for CNN Money, in July of 2015. " In the early 1990s, about half of disabled Americans were employed, according to Census data. Today that has fallen to just 41%. Some of the decline is due to an aging population. Older workers are more likely to have disabilities, especially physical ones." http://money.cnn.com/2015/07/26/news/economy/americans-with-disabilities-act-problems-remain/

Many disabled Americans. like me, want to work, but we are afraid of losing our benefits. There is no incentive to work because of the restrictions that have been placed on us by the government.

People with disabilities are more conscientious and appreciative than most non disabled workers. That is because we know that we must prove that we can do the job that we were hired to do. If an employer is willing to make the reasonable accommodations that may be necessary so that a disabled worker can do their job effectually, the employer will find that hiring someone with a disability is an asset to the job, rather than a liability.

The best example of the postie effect of inclusion in the workforce can be found on the television show Speechless. Instead of hiring a non disabled actor for the role of JJ DiMeo, The show hired Micah Fowler. As you know, Fowler, like the character he portrays, has cerebral palsy. He is a working actor on a hit sitcom. He is part of the cast. He is doing his job. He is contributing..

Micah has the largest trailer of any of  the actors on the show. His trailer has a ramp to accommodate his wheelchair. He also has his own makeup chair on the back patio of his trailer.

Inclusion works. .Just give us a chance.












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Thursday, October 27, 2016

SHE WENT TO VISIT THE QUEEN

American television viewers will remember Emma Samms from her 80's television roles  Fans first saw her in the short lived TV series, Models Inc.
Audiences remember her as  Holly Sutton, the con artist with a heart of gold on General Hospital. Holly won Luke Spencer's heart after his beloved Laura was presumed dead. Emma Samms made fans forget Pamela Sue Martin ever existed. She took over the role of Fallon Carrington Colby on Dynasty and The Colbys and made it her own.

In 1982, Emma co-founded The Starlight Children's  Foundation with her cousin, Peter Samuelson. Starlight has chapters in the United Kingdom, the U.S. Canada, Australia and  Puerto Rico. http://www.starlight.org/

Starlight is an non-profit organization. Its mission is to brighten the lives of seriously ill children. The organization partners with other non-profits and children's health organizations to accomplish its goal. Starlight lessens a child's fear by bringing entertainment, innovations in technology and education to them during their treatment or hospital stay.

Recently, Emma was awarded an MBE for her work with Starlight and other children's charities. She was made a  Member of the Order of the British Empire by Queen Elizabeth II at Buckingham Palace.  http://www.gloucestershirelive.co.uk/actress-emma-samms-receives-mbe-from-the-queen/story-29840301-detail/story.html

I met  Emma and her sister, Louise, in the 80's, when she played Holly on General Hospital. I never thought, when I wrote a fan letter to Emma that I would receive a reply.I received a hand written note from Louise. That note started a friendship between Louise and me.  Louise and Emma invited me to the studio for lunch when we were on vacation in California. I have some lovely memories of that day as well as the day I attended Emma's fan club luncheon and year or two later. 

Life got in the way. Louise and I lost touch for many years. I always tried to keep up with what Emma was doing. Thanks to social media, Louise and I have reconnected. I love hearing about her life and seeing her photos. Facebook has bridged the continent between us. Twitter helps me stay connected with Emma. She and I have something in common now. She is a writer too.

Congratulations Emma, on your well deserved honor. I loved seeing the photos.  I know that you will continue helping others and bring them joy. Louise, thank you for your friendship. Keep those photos coming. I am proud to call both of you  my friends. 

And, It all started with a simple fan letter.





   





Sunday, October 16, 2016

LET YOUR VOICE BE HEARD

October 15, 2016, marked the two year anniversary of my being forced to move into a facility. When I moved here, I was advised to embrace being here.  Two years have passed. Seven hundred and thirty days. I cannot embrace being here. It feels like a punishment.  I keep wondering what I did.   I wonder how long I will have to pay for my crime

Someone on Facebook, asked me to defend my reason for supporting Hillary Clinton. Senator Clinton has brought disability rights to the forefront of her campaign, She is the first candidate to endorse The Disability Integration Act http://www.adapt.org/main.diamain ,

The DIA was introduced by Senator Chuck Schumer. Its purpose is to ensure that people like me, who were forced to live in long term care facilities  or other institutions be given the supports and services needed so that they may be integrated back into the community. ADAPT a grass roots organization,works tirelessly to ensure that the rights and freedom of people with disabilities are protected,  

You can read Senator Clinton's statement regarding the DIA here: https://www.hillaryclinton.com/briefing/statements/2016/04/06/statement-by-hillary-clinton-on-the-disability-integration-act/

No one who is not sick and has a good mind should have to live with limited rights and freedom. I can get out, but getting transportation can be a hassle. Getting aides to cooperate  can be an even bigger challenge. I wish the state had contacted an independent living center about support services for me. Instead, they just dumped me here.  It's been two years. It feels like ten.

When I look in the mirror, I see a person with many challenges whose body has betrayed them. Recently, I visited the Starkloff Disability Institute.  http://starkloff.org/ Starkloff helps people with disabilities gain employment and be part of their community. I saw people with many more challenges than I have. I visited a gentleman's apartment. I learned how he manages caregivers so that he is safe. He works. He lives his life.I hope  Staekloff can help me too.

I have put my family through a lot. I have done and said things I am not proud of to get my way. I have asked for their forgiveness countless times. The have no reason to believe me now. I am truly sorry. I thank them for all they have done. I hope I will have their support as I begin my journey toward freedom. I don't know what will happen. I have to try. I don't want to die here.

The person on Facebook asked why they should vote for Hillary Clinton.. Donald Trump has mocked people with disabilities, insulted every minority group and spoken about woman as though they were less than human  He believes a woman's only purpose is to sexually satisfy men. 

I am not telling anyone why they should vote for one candidate or the other. The most important thing is to vote. Let your voice be heard.












Tuesday, October 4, 2016

I WANTED TO...

October 4, 2016 is Ballet Day at The Royal Opera House in London. A friend posted this video on my Facebook page. I was so moved by the video that I had to share it.  https://www.facebook.com/royaloperahouse/videos/10154170899857579

October 5, 2016 is World CP  Day/ 
According to their page on Facebook,"World Cerebral Palsy Day is a movement of people with cerebral palsy and their families, and the organisations that support them, in more than 50 countries. "

"Our vision is to ensure that children and adults with cerebral palsy (CP) have the same rights, access and opportunities as anyone else in our society. It is only together, that we can make that happen."


World CP Day seeks to "Empower people with a cerebral palsy to have a voice about changing their world."

The video of Charlotte realizing her dream of participating in ballet is a perfect example of what World CP Day is all about.  Inclusion and acceptance..

There have been positive changes.  We still have a long way to go before we are truly accepted. I constantly have to tell any new aide I have that there is nothing wrong with my mind. My limbs don't work the way they should. I hope the day comes when people truly see me as a person with abilities, not just someone with a  disability. I hope the the day comes when people with CP aren't forced to be in nursing homes just because they need care.

I wanted to write something profound. I wanted to write what this day means to me and everyone with cerebral palsy. .I wanted to, but I'm not. Instead, I am going to encourage you to watch the video of Charlotte. I am going encourage you to watch Speechless tomorrow night.  You can also catch up on episodes at.  http://abc.go.com/shows/speechless  Doing those two things will tell you so much more than I ever could.

HAPPY WORLD CEREBRAL PALSY DAY!











Sunday, September 25, 2016

IT'S SO RANDOM


Well, We are still not allowed to sit out in front and wait for our rides. I almost missed mine because I couldn't see. Another resident spoke up on  my behalf. I respect this resident because they understand how difficult living here is  It has been a hassle for anyone who uses Call-A-Ride. The facility cut down bushes. We can see from the inside now. This is not the solution we were hoping for, but there are more important things to worry about. I am just happy to be going out again.

The nurse I wrote about in my previous blog post, is a very good nurse. I like them. We have had no further issues. Maybe they were having a bad day. I am still nervous around certain residents, Aides and nurses are aware  They try to make sure no incidents occur.

I switched tables one night. I have decided to stay at my original table. The other table is made up of elderly  residents. We are all talking more at my table now. It has been nice. I go down to where the younger residents live. They have a secluded patio. I watch the birds. I have talked some.of the residents. Good conversation.

Last Thursday, on the way back from the library, we passed the strip mall where my mom  did some of her grocery shopping, we passed Ted Drews Frozen Custard ,a summer tradition for us. We passed my former doctor's office.  We passed the now vacant mall where we spent every weekend. Tears filed my eyes. I was very emotional. So many memories.

I will begin looking into other living situations soon. Exploring my options. I hear from people with disabilities, all the time, who read this blog. They tell me they got out of a facility. I can too. The difference is they were not hot lined. I have to try. A resident told me last week, there are two ways out of here, in a coffin or a body bag. I want roll out in my power chair with my head held high. I will have a viable plan before I contact my social worker. If it doesn't work out, at least I tried. I am labeled severely disabled. I have a mind. I can think. What makes me different from other residents here is there are things I want to accomplish. I hope I am given the chance.

Random thoughts. One common thread. I am alive. Things could always be worse. I am a survivor. 


Sunday, September 18, 2016

A GOOD NURSE



What qualities make a good muse or CNA? I always thought nurses were supposed to kind, caring and compassionate. And, do their best to make you comfortable. I was in the hospital in 2014. The staff did there best accommodate my needs. They didn't care how times I put my light on. I wish the same could be said about the nursing staff at this facility, or to be more accurate, on my floor. .

Friday night,a resident with Alzheimer's,blocked the path to my room. When I tried to pass the resident become agitated. They bumped my chair with theirs. A nurse was down at the end of the hall. I called for help. The nurse saw me, but did nothing.  The resident still refused to allow me to pass. They kept saying they had to get to their mother. 

I continued to call for help. Finally, the nurse came.  They took the resident back to their room.  I have one question.. I know the nurse saw me trapped in the hall, by the resident,. They heard me calling for help, Why didn't they come right away?

This nurse has told me that I get on their nerves. I guess it is because I  report things. I advocate for myself. Last week, the nurse told a CNA who left me in the bathroom, that I would tell. I do report incidents.  They have to be something major. I don't report every little thing. A month or two ago, when the nurse was putting me on the bedpan, I told them I wasn't on it well. They responded, "Jesus Christ, what do you want me to do?" I reported this to the administrator. The nurse came to me asking why I had reported them. They wondered what they had done.  I guess that's why this nurse thinks I report everything. The sad thing is I liked this nurse They are good at their profession. I wish they thought well of me too.

Saturday morning, a mentally challenged resident blocked my way into the dining room. They would not wait until I passed. I was trapped again. The resident began screaming at me. I called for help. There were severs in the dining room. No one came to help. The resident forced their way passed me. After breakfast, I told the weekend nurse what happened. , I said the resident screamed at me,and would not let me pass. Her screams caused me to jump. The nurse's response was the resident could not help it, maybe I shouldn't jump. I am unable to control my startle response.If my regular aide is here, they try to keep this resident away from me because this resident always ttys to prevent me from passing. After our conversation, the weekend nurse kept an eye on the resident too.

I don't sleep well. The bed is uncomfortable If I ask to be moved in bed too many times., the CNA's and nurse get annoyed. . One CNA told me, "We all know there is no satisfying you." My feelings were hurt. When I ask for help because my back and neck are hurting, I think they should move me until I find a comfortable position. That's what one nurse did a few months ago. I had a good night that night because the nurse took the time to help me.. I don't complain anymore, if I am uncomfortable. I do the best I can to get some sleep..

Last Thursday, my brother had to call twice to ask that I be taken to the bathroom. If my brother calls, things are done right away. If I ask, my light may be turned off without my needs being met for quite a while. Another problem is the stand up lifts don't always work because the batteries have not been charged. When that happens, the aides have go looking for a battery. That takes time too. This facility has needed new lifts for a while now. There are always problems with them, 

They used to tell me they had too many residents and not enough aides on the floor. Now, there are only nineteen of us in my section..  Nurses should be able to devote a little time to me. 
A social worker here, told me several months ago, my blogs are not always factual. I write my really here. The social worker is not here in the middle of the night when I have asked for help. I have been told to just go to sleep.

I didn't choose to be here, but at least for now, I am. I want to know that when I ask for help a nurse will not ignore or forget about me because they feel someone else's needs are more important than mine.

I apologize for the length of this post.  I didn't write it to cause any kind of trouble. I want to be treated with respect and dignity. I am thankful for the care and concern of my family.I could not make it here without them.. 


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Monday, September 12, 2016

A BIG DEAL

I don't know how to write about ABC's new comedy, Speechless, without making it personal. The pilot is streaming now at www.abc.com It is available until September twentieth.  The show premieres on September twenty-first. 

Ever since watching the pilot., I have wanted blog about it. I started a post many times. They all sounded like a review. That's not what I wanted to write. I hope you read the piece I wrote about the show for The Mac Wire a few months ago. http://www.themacwire.com/abcs-speechless-not-your-typical-sitcom/ Writing a post about the show became a big deal in my mind. I wanted my post to be the kind of post that would make people want to watch. I wanted people to know what an important show Speechless is and why some reviewers are calling it "groundbreaking television." I was putting a lot of pressure on myself.   I shut down. I didn't write anything.

There are two reasons, in my opinion, to watch Speechless. Viewers will gain insights into what's like to raise a child with a disability. They will see a mother's fierce determination to give her child the best life possible while struggling not to neglect the needs of her other children.

The second reason to watch is  Micah Fowler, the actor who plays JJ DiMeo on the show. Like his character, Micah Fowler has Cerebral Palsy.  How cool is that?  He knows what it is like to have CP. He brings a certain realism to the show that an able-bodied actor could not.  

If there had been a show like this when I was growing up, it would have shown me that people with disabilities can achieve things in life. When I was young, we were not told what we could, do, only what we couldn't.  Today we have Speechless and Micah Fowler  to send a positive message to young people with disabilities/

I hope you'll watch Speechless. I hope it will get people talking. I hope it gives people a new perspective. 

Watch the promo below. Then watch the pilot.

Speechless. It's funny/ It's real. It's a very big deal.














 





Monday, September 5, 2016

FREEDOM ISN'T FREE

The last week and a half have been very difficult here. Trouble began with my aide failing to get me up and showered so that I could eat and be ready for my Call-A-Ride van  at my scheduled pick up time. You must cancel Call-A-Ride three hours before they are scheduled to pick you up. You cannot cancel at the last minute. If you do, you get points against you. After a certain number of points you are not allowed to ride for two weeks. My aide had not yet arrived, I knew I would not make it to my van in time. I cancelled.

That evening, after dinner, I wanted to go sit outside in the front of the facility. The receptionist informed me that she couldn't allow to do that. I told her I would be right out in front. She could see me from her desk. She informed that she couldn't let me go outside by myself. The administrator and another staff member came and blocked my way out of the door. 

The administrator told  me that if I persisted in trying to sit out in front he would have to write me up for being non-compliant. I became angry. I voiced my feelings, telling the administrator, this facility had become like a prison. I apologized a few minutes later.   One the one had, I was embarrassed by my behavior. One the other hand, I felt I was advocating for myself. Thankfully, my behavior was not documented.

The new rules were put into effect after and elderly resident caused someone to fall out in front. This is the second accident this resident has been involved in.. They cannot be held responsible because they become confused

Why am I being penalized for the actions of another resident? I was not present at either of the accidents. And, If this is my home, why can't I sit wherever I choose to sit?

I understand that this facility is held accountable any time there is an accident. I understand that this facility is a business. I understand that this facility has to meet state guidelines. I understand that this facility has a resposibility to protect its residents.. It still feels like the new rules are a little extreme. I am not the only resident who feels this way. It has been a topic of meal conversation..

Last week, an aide gave up part of their break to go walking with me. We walked all over the grounds of this facility. It was the happiest I have been since moving here. Nurses were happy because I was smiling. It reminded me of summer evenings when I was at home. My caregivers and would go everywhere. When the aide told the unit manager what she had done, the aide was told she couldn't take me outside. I could go out on either of the two patios available to residents. My aide was repremanded for doing something nice for me. I don't understand.

Therre are good people here. My regularl morning aide makes sure I am up on time and ready to start my day.That means a lot to me.I appreciate the aide who took me walking. I felt free. That too, meant a lot to me. 

I understand the importance of rules and regulations. This facility supposed to be my home, I hope the rules will be bent a little in the future, so that we really feel that this is our homr not just an insitution. 


Wednesday, August 31, 2016

IT'S HIP TO BE SQUARE


I am sure you have heard the saying, "It's like trying to fit a square peg into a round hole" No matter how hard you try, the square peg just doesn't fit. This analogy fits my relationship with the other residents in this facility perfectly.

This fact was driven home to me,in the past few weeks .I have tried to be friendly with other residents, specifically, two residents at my table. These two residents consider themselves a couple here .Everyone knows them. If you see one of them you automatically expect to see the other.

When I began sitting at their table they made another resident uncomfortable because they ignored them. Their excuse was they could not hear them and they were weird, The resident moved. They told me I could stay. It was the other resident they'd wanted to .move. When the resident moved, things were fine. We ordered take-out at dinner and enjoyed a glass or two of wine.  My brother began barbecuing for us,  They got steaks and salmon burgers. They were happy. I was accepted.

The couple .always did a certain amount whispering. I also watched her feed him strawberries and touch the side of his face. Lately, it has gotten worse. Last week, he turned his back to me, in his chair, so I couldn't enter their conversation. And, when he was leaving the dining room one day, I offered to stay and keep her company while she ate. I was told,"You're not the right gender." I left without saying a word.

Residents here have always looked at me like I am from another planet because I write. I have a life outside of this place via my computer. I have goals. They don't understand me. I am tired of trying to fit in. That doesn't mean I am better than they are. I am just different.

I shared a lot with the residents at my table. I knew they were not as fortunate as I am. My family gets whatever I ask for. Someone told me the were just using me. I would hate to think that's true.

The other resident at our table doesn't care if they talk to them. After this week neither do I.

It is hard to live in this facility. My room and computer are my solace.

I used to enjoy sitting in the front of the facility. I could see the road in the distance. I liked  looking at the cars on the road. That symbolized freedom to me. There are new safety rules. We are not allowed to sit in front alone anymore.I don't want to sit on the back patio with other people.  I like to sit by myself. Just relax. Guess that makes me a square too.

I know what is important to me. I don't care what anyone thinks. I like who I am. And, you know what? It's hip to be square

















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Wednesday, August 24, 2016

SCOTT CLARKE MAKES PEOPLE SMILE ONE TOON AT A TIME

I have never met artist Scott Clarke in person. We became Facebook friends, in 2014, during Cher's Dressed to Kill Tour. 

I began seeing his toons on Facebook.  Scott's  toons are unique in that he adds a verse to his drawings. The verse may be a quote from the celebrity featured in the toon or a line from a movie they may have been in. Whatever the verse may be, it is always positive  and fun ..

Scott doesn't remember how old was when he started drawing. He remembers sitting next a girl, when he was in the third grade, who drew well. He coped some of her techniques. He believes all artists influence each other, no matter what age they are.  Being an only child meant he spent a lot of time alone. Drawing helped fill that time.

Scott's first drawings were of The Flintstones/ He liked the drawing style of Hanna Barbera. He even created his own versions of TV shows like Gilligan's Island and I Dream of Jeannie. As a teenager, he became fascinated with designer Bob Mackie and Cher. He began drawing his own versions of Mackie's creations for her. He/loves drawing Cher/ He has drawn over three hundred toons of her. He has drawn over  one hundred toons of Barbra Streisand  and three hundred of other stars.  He also has a greeting card line called Crabby Cards.

Scott has taken a few classes. He did not like the structure of a class. He likes to find his way on his own. If he needs direction, he'll ask.

Scott's celebrity toons started when he posted a toon of Cher on Facebook.  "People seemed to like it so I  dove into it!"

"The first toons I did were people/celebrities that were cartoonist in life, larger than life characters with incredibly recognizable characteristics. I still find those kinds the MOST enjoyable to do. Cher, Barbra, Dolly, Bette, Liza!!! All fabulous and FUN!"

Drawing a toon is not just about the drawing. Scott researches a celebrity by watching videos and reading the person's bio/ This helps him get to know artist as well the person/ It helps in the creative process .  It takes about twenty minutes for Scott to draw a toon. He may draw a toon and write the verse for it later. He draws and writes whenever the inspiration strikes him/.

Scott has never had a negative response to his art. Most celebrates are  flattered. He does his best to make his toons positive and flattering. Scott leaves negativity to the political cartoonists/ His goal is to make people happy, to inspire, entertain and to help people remember happy moments from the entertainment industry/

Scott has a list of celebrities he has yet to toon. His shining moment came last year, Cher used one of his toons on her birthday cake. Scott spoke to Cher on the phone/ She asked him to do a toon for her mom, Georgia. Georgia's happiness made Scott happy too.

Both Cher and Barbra have seen Scott's toons and they approve.

Scott also draws toons for various charitable organizations. A portion of the proceeds from Scott's Cher-toon bool are going to Cher's favorite charity, Children's Craniofacial Association. ccakids.org

The Barbra-toon and Cher toon books are just the beginning. More books are coming. Even coloring books, A portion of the profits will go to charity because to Scott that's giving two smiles in one.

Scott Clarke,is  making people smile one toon at a time.

 Barbra-toons  https://www.amazon.com/Barbra-toons-illustrated-tribute-Scott-clarke/dp/1535196629/ref=sr_1_1?ie=UTF8&qid=1472052174&sr=8-1&keywords=scott+clarke+barbra-toons

Cher-toons  https://www.amazon.com/Cher-toons-heartfelt-tribute-illustration-Clarke/dp/1535196327/ref=sr_1_1?s=books&ie=UTF8&qid=1472052418&sr=1-1&keywords=cher+toons

Crabby Cards  http://www.zazzle.com/crabbycards/products


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Monday, August 15, 2016

HOW DID I GET HERE?

Okay, maybe that is a rhetorical question, but it is one I ask myself a lot, late at night, as I wait for sleep to come. What could and should I have done differently? And, most importantly, what can I do to change my situation now?

I .accept the fact that it is my fault that I am here.  I didn't have the skills to manage caregivers, a house and a sick dog. Someone told me people with disabilities need to help  themselves. I agree. However, when you have been sheltered all of your life and had everything done for, as I had, you don't have a clue about how to manage your life/. At least I didn't.

The social worker who forced me out of my home only met me once. I  was not aware I had been hot lined until my family informed me five days before my life changed forever. Yes, I would have freaked out, but at least I would have been a part of the discussion concerning my life. I do not have a guardian, It was the social worker's job to inform me, not my family's. My family did everything they could to keep it from happening.

The social worker knew nothing about me, my life or what was important to me. They just did their job. They have been to see me once since I have been here. They offered to make it possible for me to play Bingo at a senior center. I declined the offer. They promised to return to discuss my options. They have yet to do so.

When you are as disabled as I am, other people always think they know what's best. They make the rules, but they don't have to abide by them.  I am sure that the social worker hasn't given me another thought. I am in a contained environment. That is all that mattered to them. Not my happiness or quality of life.

It's been almost two years. I still cannot believe this happened  to me.  Because of an anonymous phone call, the life I knew was taken away from me.

I am not supporting a candidate I am supporting disability rights. People with disabilities should help themselves. And, as a nation, we should help each other because anyone's life can change in an instant. No one is guaranteed a perfect future.

The things I want are simple:
To sleep in a comfortable bed
To be able to decide when, where and what I want to eat
To have privacy when I am in the bathroom (Last week someone from laundry came in.)
To be able to go out on weekends
To have my needs met. 
To not ht be forgotten
To know that I matter
Privacy and having choices are important to me.

I am so tired of being here. Tired of having to advocate for myself everyday.Tired of hearing staff complain about how hard their job is. That they can't  wait to go home. I'd like to go home too. And, someday, I will.

I have hope. I have to have plan that is safe and viable. It won't happen tomorrow. I deserve another chance. I know it will happen..

You all know how I got here. The question is, what do I need to do to get out?











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