Sunday, September 25, 2016


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


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.. 

, .

Monday, September 12, 2016


I don't know how to write about ABC's new comedy, Speechless, without making it personal. The pilot is streaming now at 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. 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


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.