Archive | July 2016

A Poem For Today

I have been feeling a little lonely lately and I wrote a poem about it.  I hope you enjoy it.

 

I Wonder 

The midsummer sun beams down on my porch,

As I look into the backyard desert. I summon the

Loud silence. Nobody to visit. My neighbors are

On rest. I’m leaning on my walker, gazing into

The land beyond.

 

Is this what happens when you get older with a condition?

Solitude? Isolation from your world? Or is this temporary,

And will I attend a lavish banquet later? Will I have more

Adventures later? Will the Prince come or is this it? Will

I have a Cinderella wedding or will I be a maid?

 

And I say. Please, let me turn Prince Charming’s head.

He’s the one I want to be with. I would sift through the wind

And rain for him. I wonder what he would be like if it did work out.

 

Now I sit here and wonder if I am a slave for life,

One that can’t go to the ball? One that will never

Wear a glass slipper or dance with Prince Charming?

Or will I see that everything is possible and will he

Come for me on his white horse and live with me happily

Ever after?

 

And I say. Please, let me turn Prince Charming’s head.

He’s the one I want to be with. I would sift through the wind

And rain for him. I wonder what he would be like if it did work out.

 

Now all the pretty girls are getting married and settling down.

And my life is clouded with rain and dense fog because I don’t

Have a crown yet. They are all getting ready for the ball with

Their dates. And I’m sitting home with my dog thinking,

“I hope a better wind is coming as the lonely howls of wind cease.”

 

And I say. Please, let me turn Prince Charming’s head.

He’s the one I want to be with. I would sift through the wind

And rain for him. I wonder what he would be like if it did work out.

 

Life With A Movement Disorder

Have you ever wondered what life with a movement disorder is like? I wouldn’t call it debilitating, but I would say it’s certainly annoying. I can only speak from the prospective of having Choreathetoid Cerebral Palsy. I can’t explain what all movement disorders are like. But I will try to portray what an average day is like with my same disorder.

I get up every day, wishing I had the full ability to take care of myself. I can dress myself, but I need assistance with my personal care. I would say I have about sixty percent of my hand function on a good day. On a bad day, well, it’s down to like forty percent. These are estimated figures. I don’t know what the actual figures are mathematically.

Eating and drinking. I can’t feed myself or sip a drink independently at all, which is very frustrating because I would love to go to lunch with friends and talk over coffee. It’s very hard to adjust to a new person feeding me because certain methods make me uncomfortable. It’s also harder for me to drink because I don’t have the ability to drink without chin support.

My movements can affect my ability to communicate. I know what I want to say. It’s just that when I am moving so excessively, I feel like I can’t communicate. I have tried Eyegaze and that didn’t help. As my grandfather would say, I’m a square peg in a round hole. He would argue that occupational therapy was the hardest for me because I didn’t fit in the traditional methods it taught because of my movements. I would always argue that speech therapy was the hardest because I didn’t have great control of my oral muscles.

Walking isn’t that bad. I would say that I have eighty percent of my walking ability. That’s really good because when I walk, I don’t have the world’s greatest balance. My movements aren’t tremors. They are just an inconvenience to life.

How do you help someone with a movement disorder? The short answer is you just have to be patient with them. There are some medications to help them calm down, but that’s a tough question. Movement disorders can be treated with exercise and therapy, but as a caregiver, you just have to be patient with them.

Anything Is Possible With The Right Mind-Set

Perhaps I should start off with a reminder that things are not as bad as they seem for people with disabilities as they really are. What do I mean?

Take Karen for example. Karen is wheelchair-bound, has cerebral palsy and multiple other conditions. She doesn’t want to finish school because she can’t use her hands and is embarrassed by her movements. She’s assisted by an augmentative communication device and tracks words with her eyes. Karen also has a lot of trouble eating and is on a feeding tube. She also isn’t as worldly as other kids her age are. She just wants to sit home and watch television.

Now take me. I never had a feeding tube. I’m graduating St. Thomas Acquinas College in December and trying to go back for my paralegal certificate. I can walk and talk somewhat and I have some hand usage. Should I feel like I can’t do anything? You know, I once thought that I was the only one on Earth that couldn’t talk. That is, until I started to meet more and more people. Another thing is that I used to see myself as having severe cerebral palsy. Today, I see my cerebral palsy as mild to moderate. I had to train myself not to feel like I can’t take care of myself. I guess the mind-set to have when it comes to any disability is that you’re not dealing with it alone. There’s always someone worse than you.

When I was younger, I had a friend that felt bad for himself for his condition. He was always moaning. His mother wouldn’t encourage him to overcome his problems. From that quick story, it can be concluded that a parent’s attitude can change how a child with a disability views him or herself. And that’s the key. Growing up, my family would always encourage me never give up, try new things and don’t let people put you down. If everybody followed that rhetoric, they would make a lot of progress.

An Old Friend

I guess I should start with the Forest Gump quote: “Life’s a box of chocolates. You’ll never know what you’re gonna get”.

Let’s back up five years. I was working on an inventory project at Museum Village and there were different groups doing this project. We had to catalog twenty-five thousand different artifacts and then, the museum would decide what to keep and what to sell. In my group, there were two college students and they were fantastic to me. They would talk to me and we just got along so well. I never thought I would see either one of them again.

Fast forward five years. Now, sitting home alone gets lonely. I lost contact with one of the guys I worked with. He was into landscaping and I was wondering if he got his degree and started working. I went to my support group last night and I was offered a seat near a short-haired guy in a wheelchair. We greeted each other and I asked him his name. He gave me his name. Something sparked me. I asked him if he worked at Museum Village. He said yes. I start freaking out, body moving. I asked what happened. He had meningitis. He was diagnosed with it twice and the second time, his uncle who was a surgeon amputated his fingers and toes due to poor blood circulation.

Be kind to people with disabilities. You never know what could happen to you. People get paralyzed in accidents, get sick or a number of other things. You just can’t assume that you’ll be the way you are for the rest of your life. Our health can change and we just don’t know when or how it will. We need to respect people with disabilities because we just don’t know what could happen to us.

 

An Article to Share

This morning I got a request from Ability Home Pro to share one of their articles.  They promote accessibility services to people that need ramps or stairlifts in their home.  This article is about how to accommodate a loved one or anybody that needs help with daily activities.  Please share this article with people you know and let’s help senior citizens stay safe at  home.

http://abilityhomepros.com/the-caregivers-guide-to-understanding-and-prioritizing-aging-in-place-accommodations/

 

Thank you

A Story For Today

Here is a short story that I wrote in my high school Creative Writing class.  I thought that I would share it with you.  Enjoy!

 

The Lesson 

It was the beginning of September and school had begun. The leftovers of a dry, sticky summer still lingered in air. Young Grace Thompson, like all the other schoolchildren in the Northern Wyoming town of Lensbrook had been getting excited about going to first grade until there was trouble.

“How was school today, Grace?” asked Grandma as she entered their one-story house. She switched off the radio.

“Horrible. Nobody treated me fairly.” Grace said pulling a chair out and sitting down for lunch. The sun beamed down on her long, brown hair.

“What do you mean that they didn’t treat you fairly?” inquired Grandma as she sat next to Grace, her purple dress shined in the sun exposing its rips and tears.

“They ignored me at recess and when we were telling about ourselves at Circle Time, I said that I live with you and not my parents. I also said that we were very poor. They all didn’t like that, so I was left out.”

“Just ignore them and they will stop after a while.”

Weeks went by and Grace tried to stop and correct many of the children in her class from making fun of her about her family. She tried explaining to them that she is from a very poor family but she didn’t care about that or not having parents. She was thankful enough for her grandparents. Nothing worked.

“Did you straighten everything out with the children in your class?” asked Grandma when Grace came out on the patio.

“I tried to but they will not listen to me, Grandma.” Grace spoke with a sense of hopelessness.

“You’ve been in school having trouble with these kids for five weeks. It’s time for Grandpa and I to say something to your teacher. What’s her name again?”

“Mrs. Clementine.”

“Well, we’ve decided to go up to the school and talk to her about this tomorrow morning.” Grandma gently patted Grace’s bony thigh.

Just then, Grace’s grandfather appeared on the porch. He was a tall, slender man with a frail face. His calloused hands reached for the porch swing and seated himself next to Grace.

“How was school today, Grace?” he asked.

Grace told him about how the kids were ignoring and making fun of her. After hearing her story, Grandpa took a deep breath and said, “Well, I’m sure Grandma told you this, but we’re going up to school to talk to Mrs. Clementine about this tomorrow. Don’t worry, Grace. The kids will learn their lesson.”

Question filled Grace’s eyes as she asked, “What’s that?”

“Treat others the way you want to be treated.”

The morning sun shone brightly on the schoolhouse and all the kids were at recess. Suddenly, a black 1924 Ford Model T, about ten years old pulled up in the driveway. Grace’s grandparents strutted up the cement walkway towards the door where Mrs. Clementine greeted them.

“Hello, my name is Mrs. Clementine. Are you Grace’s grandparents?” inquired a young, tall woman. Mrs. Clementine had blue eyes and straight, brown hair, which was tied in a ponytail. She extended her slender arm towards each of Grace’s grandparents

“Yes we are.” Grandpa said, shaking her hand. “Grace says that she is feeling left out by her classmates. Is this true?”

“Yes. They tend to exclude her from a lot of activities.” Mrs. Clementine replied.

“Grace also said that the kids make comments about her not having parents and her coming from a poor family.” Grandma spoke up, agitated. “If it is true, would you please correct them? Yes, we are not wealthy and Grace does live with us, but that shouldn’t affect her socially. Many might not be wealthy either the way our country is right now.”

“I understand.” Mrs. Clementine thought for a while then said, “I’ll make sure to correct their behavior.”

“Thank you, Mrs. Clementine.” Grandpa said, shaking her hand. Grandma did the same. Then, they got in the car and went home.

Mrs. Clementine returned to the schoolhouse and said, “Class, when Grace tries to play with you, please don’t leave her please don’t leave her out. Treat people the way you’d want to be treated.”

After that day, Grace made many friends. Nobody left her out again.

My Experience At the Movies

So I faced, not a fear exactly, but something that I have been putting off for a long time.. I went to the movies for the first time in ages and saw The Secret Life of Pets. Oh my goodness! It was so cute. The idea of what our pets do when we are gone is hilarious. It matches the saying, “When the cat is away, the mice will play”. I know I am not a critic like Kevin McCarthy is, but this animated movie really entertained me. I felt bad when Max tried to get Duke home to his owner and he wasn’t there. That must have been so heartbreaking. And they threw in a little romance between Max and Gidget, which was cute.

Going to the movies with my aide was very relaxing. I haven’t gone in years and I enjoyed myself. I did the sensory screening and it wasn’t too bad. Now I hope to see Finding Dory. Facing a fear or anxiety isn’t always easy. It takes effort and determination to face one and that’s what I need to do. I didn’t watch too much television growing up and now I’m behind the times. But nevertheless, I will catch up. Don’t do this to yourself. Paying attention to entertainment is crucial for everybody in this day and age. Everybody, including children, needs that basic understanding of what’s going on around them.

Small Things in Life Make the Difference

Like many people with disabilities, I have dreams and aspirations that I wish I could achieve. They may be small, but they are still things I wish I could do. Here are some of the things I wish I could do:

 

  • Hold a cup of coffee
  • Volunteer at my local riding facility
  • Cook
  • Write
  • Sew
  • Use my cell phone
  • Comb my hair
  • Brush my teeth

 

The list goes on and on. I pray that more advances in medicine come out and help more people with disabilities achieve dreams like mine. I even hope that more people with mental illness get the help that they need. It is sad to see that a disability can’t be cured, but I hope that one day, science will advance so much that a disability will be cured.

Reflection on my Therapeutic Past

You know, I have been pondering this question a long time. What was my favorite rehabilitation facility growing up? You know, I was in a lot of different rehabilitation facilities and they all did me a lot of good. I did Camp Jawonio and that was fun. But I really liked my therapeutic riding center, my therapists in Westchester and my rehabilitation hospital. They really helped me a lot. And, of course, I really must thank all of my early therapists that gave me a leap in life. They put me on life’s right path and I am grateful for that.

I must also thank my grandparents and family for pushing me to do my best. Without them, I would probably be wheelchair-bound. And now, I am trying to graduate St. Thomas Acquinas College, get a plan for the next few semesters and move to be on my own. Of course, it won’t come together overnight, but I’m just getting together an itinerary for myself. I will keep you posted as to how things go.