I WANT TO BE WANTED

 Shhh. Don't tell anyone. My guilty pleasure is watching Dr. Phil show videos on Youtube. His guests fall into one of three categories for me. 

1. Those who are genuinely sincere and in need of his help.

 2. Those who are looking for their 15 minutes of fame. 

3. The guests that have me screaming, "Are you for real?" 

And, who can forget that egregious error in judgment Dr. Phil made when he told the girlfriend of a disabled man that she could be his girlfriend or his caregiver, but that she could not be both. There are numerous videos of inter-abled couples that debunk this myth, Dr. Phil. Take my advice, and check them out.

There are two things that Dr. Phil tells many of his guests that resonate with me. When he explains them to one of his guests I feel like he is speaking to me too.

Anger stems from, hurt, fear, and frustration. That is certainly true of me. I have been afraid since moving here. Fear of being reported and fear of new caregivers. fear that they won't listen. Fear of doing something wrong, fear that I will be treated as a body and not a person with thoughts and feelings. The worst thing caregiver can do is tell me that they don't care. I guess I should not speak out, but many just care about their job. I know this is the truth cuz they have told me.  

I appreciate that my needs are met. They provide good physical care. 

Hurt by the way I am viewed and spoken to by some of my caregivers.

Frustrated because my caregivers do not listen to me. They tell me not to tell them how to do their jobs. 

If I cry I am called a crybaby.According to Dt. Phill crying is not a sign of weakness. It is a sign that someone has been strong and that they are tired. They have endured. They have reached their 

  

I toured a second nursing home. It is a city in itself. The facility offers everything I could ask for. The bathroom is still a concern. I will have to use a Hoyer lift which scares me.

The staff was warm and welcoming. The place was bright, cheerful, and buzzing with activity.     The semi-private rooms were surprisingly large.

I am going to return in a week or two to spend some time at the facility. I am ninety-five percent sure that this facility is the right place for me. If all works out I plan on moving after the first of the year.  I will keep you posted.

No one ever wanted me here. I need to be somewhere where people want me around. A place where I can talk to the staff freely. A place where I am appreciated, not constantly told how much I get on the staff's nerves.

Some of the staff have told me that they did not care if I stayed or not. They did not care what I did. I get that, but did they have to tell me to my face?

I was blamed for staff leaving. I was blamed for causing most of the discord in this house. I was yelled at and cursed at more than I have ever been. I began to get migraines again. I can't take it anymore.

I was not your typical group home client. That's why this living situation did not work for me. The staff did the best they could. I did not do enough research before moving here. The failure is on me.

Please send positive vibes my way.  I pray that my concerns will be resolved. I am looking forward to the coming year. I look forward to beginning this new chapter of my life,.

.

 

A CP TEACHING MOMENT

 I am in elementary school. The loud unexpected buzzing of the fire alarm causes me to jump.  My heart is in my throat. I feel anxious, as well as a  little sick to my stomach,  from my startle response. We are taken out into the hall to the nearest exit. It was just a  drill. 

When I was in school the busses were not equipped with lifts. A board was put down. Those who could not walk were carried off the bus and put into our chairs. The bus attendant let the board fall with a loud bang.  I was on the bus waiting for it, holding my ears. Holding my made me feel better. Not sure why. Holding my ears did not stop me from startling. It just reinforced my nerd reputation. 

The bus attendant would unexpectedly exclaim, "POW!" He'd laugh hysterically when I jumped. I was confused. Didn't adults know better?

There was a short time in grade school when the milk cartons were triangular with a hole in the middle for the straw.  Any empty carton, when smashed, made a loud pop. My classmates loved popping the cartons. They also loved seeing me startle when they did. An added bonus. As you can imagine. during that time, lunch ceased to be a favorite part of my day.

My family loved the fourth of July. I regret that my startle response kept them from enjoying fireworks the way other families did. 

Fast forward to November of 2021. I am sitting at the kitchen table deeply engrossed in a Youtube video on my Kindle. I am, minding my own business, BOO!  I jump, my heart going into my throat, anxiety, making me feel nauseous. I look up. I ask the offender why they would do that?

They tell someone here, "I scared her ass."

When I try to explain about m, my heart jumping, etc. I am told they were just messing with me. They tell me I'm still living. They tell me I am carrying it too far. 

They are adults. Shouldn't they know better? The little girl inside of me still wants to know.

According to Microsoft Bing Although the Moro reflex typically lasts from birth to 3 to 6 months of age, this response generally remains into adulthood for those with cerebral palsy, due to the neurological differences present in those who live with the condition.

I still remember that day in my child psych class when I learned about the Moro reflex and CP. There was a name for it. It was not my fault. It was a part of my CP.

If I startle in front of you please do not make a big deal of it. It's nothing you did. I would love it if you would just pretend you did not notice it.

Please do not laugh. I am embarrassed enough.

Please do not make me startle on purpose for your own amusement. Doing so is mean-spirited. It is ablest as well.

Show empathy.

Show compassion.

How would you feel if someone made you Jump,  then laughed? 

Be kind.

Be understanding.

Be respectful.

Oh, and one more thing, ask me questions. If you want to know something about me or My CP. Be polite.  Start a dialogue. Maybe someday people will understand.

HAPPY THANKSMASYEAR

(And All Holidays In-Between)

As soon as the ghosts and goblins disappeared I could have sworn I heard the faint voices of carolers singing We Wish You a Merry Christmas. But, for me, the true sign that the holiday season has officially begun is the holiday Daisy Sour cream commercial. What exactly is a dollop anyway?

https://www.bing.com/videos/search?  Aww, just warms my heart. 

q=daisy+holiday+commercial&docid=607997310010275267&mid=D0CB1C8AC0028DD70F5AD0CB1C8AC0028DD70F5A&view=detail&FORM=VIRE

Turkeys are pricey this year. That's okay. Give me a turkey burger, a piece of pumpkin pie, and a libation or two, and all will be good with me. The most important thing is being connected to my family and friends via technology. 

I'll be lost in the ghosts of Thanksgiving's past. The good times. All the delicious food, my mom's last Thanksgiving when we raised our glasses to her. There was also the time when mom forgot the side dishes in the oven, probably because I called her for something minor, and the kitchen became a smokey haze, but I digress.

I am thankful for the roof over my head, the food on my table, and the care I receive. There are many not as fortunate as I am/

Thanksgiving weekend of 2016 I watched my first telenovela. If I am lucky I'll find another one. Or, maybe, a new Korean drama.  I know I will "travel" somewhere.

Christmas will be much the same as Thanksgiving. Quiet, I encourage you to remember those elderly and disabled folks living in long-term care and group homes. Send cards, call, visit. You might consider asking a nursing home if you could adopt a resident for the holidays  I knew many residents who were alone on holidays. I know they will appreciate a thoughtful gesture. I know they will appreciate being remembered.

The most important thing and I know I write this in my posts every year but if If you tell someone living in a nursing home that you are going to visit them it is important to keep your word. You may not mean to, but you let them down when you don't. I know life gets in the way. Just do the best that you can.

2022 will ring in with me wearing bifocals. There will be a changing of the guard. here. I pray the transition will go smoothly.

Usually, in my New Year's post, I list my goals as a writer for the coming year. I have been promised so many things related to my writing, that never materialized. I am disappointed and disillusioned that these promises were not kept. I will always write posts for this blog, but I am tired of getting my hopes up for nothing. 

I will write for myself. Hopefully what I write will be of interest to all of you too. I am done with trying to prove I am good enough, I write well. If people can't see that, that's their problem, not mine. My writing may be depressing but it's my reality.  I write my feelings. 

I hope there is something in my posts that you can relate to.

January2, 2022, I am giving up cocktails until Easter, April 16th. I will continue my exploration of veganism in the new year as well.

HAPPY THANKSMAS YEAR,  and all holidays in-between, from this golden girl on wheels.

LIFE'S A DREAM

I wish I could move away. Move to a place where no one had been briefed about me, no one has an opinion about me, no one's read my ISP or, knows anything about me. Not even my name until I told them.

A fresh start. An adventure. A clean slate.  Just me and a friend, for moral support, doubling as my PCA. That is the part I would not tell her until she agreed to go with me. Sneaky, aren't I?

I have watched YouTube videos of people with disabilities who've moved across the country, away from family and friends, to start a new chapter in their lives. I admire their strength, their fearlessness, and their courage. They face the unknown with excitement rather than fear.

I've researched. Southern California I love to research and learn. (Oops, my bad, I forgot to mention that I'd want to live in Sherman Oaks or Studio City.)

Southern California has an independent living center. I would reach out to them to find an accessible apartment, PCA services, and accessible transportation services for someone on government assistance. I'd ask if I could work for the center from home. I'd be a great asset as a writer for their newsletter.  https://www.scrs-ilc.org/?fbclid=IwAR0_zeA39N4Jg-VuKmsLII9IRm6hBrO7uUdgkuHjo3372-G3PfhyAGxZZ3A

I chose Southern California because it's a beautiful place with palm trees, warm weather, and every once in a while, maybe I'd get to see the ocean. I have amazing California memories. The Santa Monica Pier and The Farmer's Market are two of my favorites. I am sure both have changed a lot since I visited them many years ago. 

I am too old. (It's a fact.  I am getting bifocals in about three weeks. Nothing screams elderly more than bifocals.) I am too fearful. Fear has kept me from doing so many things. I am/was my own worst enemy.

To start fresh in warm, sunny California would be the best.

All of you reading this are probably shaking your heads thinking I am totally insane. You are wondering why I am wasting a post about a dream that will never become a reality? In all honesty, I can't believe I am writing a post that's so personal to me. I did not overthink it. I just began writing. This post is the end result. 

I am not stupid. I know there is no way I can move anywhere (except back to a nursing home.) much less Southern California. It's the planning, dreaming, and researching that keep me going during difficult days.

Then there is that little voice in my head that tells me, "probably not, but then again..." I should tell that little voice to shut up. I don't. I kinda like it. 

Dreams provide me an escape. That little voice in my head?  That's hope,

WHERE DOES IT END?

 When you are on government assistance the government owns you. The government decides everything from the amount of EBT you receive to whether or not you meet the criteria to receive a mobility aid.

 All group homes, in the State of Missouri, fall under the umbrella of the Department of Mental Health. 

I have resigned myself to the fact that everyone here knows my business, discusses my behavior, and this agency has the right to give me thirty days' notice if my behavior doesn't comply. I  have accepted that. I  am working hard. This placement has to work for me.

I am always told to be e the bigger person. I am older than the staff here. I am tired. It's getting old. I am  doing  my best to get along with the staff here 

My housemates show me what courage is on daily basis. Living in this group home has shown me how blessed I am. I hope my housemates know that they can always count on me to be their advocate.

I have a DNR. The Department of Mental Health will not allow my DNR to be enforced in this house. This means that if I stop breathing in this house the staff is required to perform CPR whether I want it or not. Outside of this house, my DNR will be honored.

I will visit my doctor. We will discuss a form revoking my DVR in this house. If I do not comply by signing the form. I will be given thirty days' notice by this agency. I shake my head. I ask myself, "Where does it end?"

I am tired of having care. Being pulled on, Using the Sara lift.  It's necessary. It's getting old. I am tired

Life is a gift. I have had an awesome one. I am ready for the stress of needing caregivers to be over. That is God's decision. He must still have something for me to learn. He must have something left for me to do.

The staff works hard. I am thankful for their care. Many go above and beyond for their clients.

As for the DMH I have one question.

Where does it end?

.,

JUST ONE MORE DAY

 With my mom, In our house, on a  typical Saturday. We'd go shopping. Then out to eat. For dessert? Ted Drews. What else? I'd say all of the things I have wanted to say for almost twelve years. The main thing I would tell her is how much I  love her.

With Lucie's warm little body snuggled against my hip letting me know everything is  okay as I fall asleep

With my family at Christmas. I miss our traditions, I know life goes on, but I guess I am stuck. The holidays are lonely here. The Pasta House Salad, ravioli, Bailey's with Fireball, Excitement as the presents are unwrapped, Laughter. I miss it all.

With the Buder Library staff. Quanda, The Amy's, and Ladonna/One more Friday volunteering at the information desk waiting for Leo and his wife to come in. Thank you, Jim, for giving me the chance . His wife had CP you see. He understood.

With the staff and residents of the nursing home before all my staff friends moved on in their life's journey. I would give anything for one more dinner of Chinese take-out, sometimes with wine, with my resident friends. We were a family, but I was too stupid to realize it then.'

Just one more day. Just one more. Please!

Time moves forward, not backward.

It does not matter how much I plead.

I have to deal with what is. 

My memories, however, are the key.

I feel safe. I feel happy. I feel loved.

For one more day.

'

REALLY?

World CP day passed without a word from me. I saw no point in writing a post. What more could I say? The message hasn't changed. Show your support. Wear green. Raise awareness. Blah, blah, blah.

I have never fit into the disabled community. My ideas are the opposite of the norm. I blame this on the fact that the majority of my accomplishments were achieved before the passage of the ADA. 

I achieved everything with the support of my mom, I just did what I had to do to continue my education after graduating high school. I knew the schools were not obligated to have resources for me. When I entered grad school my first advisor came right out and said the school did not want me.  He told me he would rather see me fail than help me. I got my MSW despite him. (Vocational rehabilitation deemed me unemployable. I created a part-time teaching position for myself. I did what I had to do to have a job.)

If a statement like that was made by a faculty member today there would be a lawsuit, mega news coverage, and the person who be screaming at the top of their lungs how their rights to higher education had been violated. They would be demanding to get the assistance they deserved. I knew I deserved nothing. I appreciated whatever assistance I was given. 

I am not saying you should not advocate for yourself to get what you need. By all, means do so. But society owes you nothing. Employees of a business do not have to stop what they are doing to assist you in filling out forms or reading said forms to you. Bringing someone with you is being independent. You are not disrupting a business. You are handling your needs yourself. 

I am disabled, but I am ashamed of the new generation of disability. They are so ready to shout ableism at the drop of a hat. A month or so ago I was called a lateral ableist by another disabled person on social media. First I googled it. I am old. We did not have those terms in my day. I had ableist views and I shared them. I did not know my views were ableist.

It's an oxymoron when people with disabilities say they are just like everyone else but the only thing they talk about is their disabilities. That's getting old and boring. Your disability is not who you are. It's a part of you. Like the color of your eyes. I voiced my opinion on social media. I got blasted for it.

When I meet someone I am interested in finding out if we share common interests. Books, music, movie, TV shows, and art are my interests. It does not matter whether they have a disability or not. Those are the things that matter to me. If a person has a question and is respectful I am happy to talk about my CP. I am not saying do not ever talk about your disability. Just balance it out.

The new generation of disabled needs to remember those who came before them. Those people with disabilities fought so that today most children with disabilities are mainstreamed.  They can have productive lives because of those who fought for basic human rights.\

I urge anyone reading this to watch the Netflix documentary Crip Camp to see true heroes of the disability rights movement. 

I have not written a post in quite a while. I did not think I had anything worthwhile to say. But I do. I, like many others, accomplished our goals when we had very few rights. Society did not accept us. 

.

The disabled of today do not have a clue, I do not want to identify with a community that does not respect different points of view. 

A lateral ableist. Really?