In nineteen seventy-five, Elias Michael School held its first (and to my knowledge) only prom for high school students. Quite a big deal. It was held at an American Legion Hall. The hall was donated by the father of one of the students.
I had to ask someone to go with me. But who? I decided, with some coaxing from my mom, to call the brother of a young girl who was also disabled. Their parents were friends of ours. I nervously made the call. There was hesitation in his voice when I asked him if he'd go with me. I actually heard his father, in the background, telling him to take me. That should have been a sign to me that the evening would not go well.
The two things my date enjoyed about the evening were getting to drive my mom's car and the food that was served. We had nothing in common. He didn't like the band at the prom. He told me he preferred classical music. He didn't try to have fun. At eleven o'clock I asked him if I could go to be with my friends. He stayed at our table. The dance ended at midnight. I had fun for about an hour. The night was awful for both of us. I almost titled this post," A Night to Forget."
Everyone was so surprised I had a date. The teachers couldn't get over it. Their reaction made me feel self-conscious. As if I was too much of a nerd to get anyone to agree to take me to my prom.
What I remember most is getting ready for the night. My physical therapist, Jo Ann, coming over and doing my hair and makeup. The white dress I wore with the little orange and yellow flowers. My date arrived with a corsage My mom took our picture before we left. In my new dress, with my hair and makeup done, I felt pretty and special. Just like Cinderella.
it's prom season. I wanted to let you know what my experience going to prom was like. If you are a disabled teen girl attending their prom this year, I hope it's a night you'll always remember. A night where you feel a little bit like Cinderella too.
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This blog is meant to inform, entertain, and make readers think. I'm not an authority on disabilities or disability issues. I can only speak about my life experiences having Spastic Cerebral Palsy. I'm sure, if another person with Spastic CP, was asked to share their experiences, they would be totally different from mine. People are different. We all relate to things differently.
I appreciate the positive feedback. I enjoy reading your thoughts and ideas. I am not, however, qualified to offer advice. While I do have a degree in social work I'm not a licensed social worker or therapist.
I have not posted in several weeks because I couldn't think of a topic. I am beginning to have topic ideas. I will try to post. weekly again.
I never realized when I started writing this blog, what a big responsibility it would become. I want to write good thought-provoking posts. I owe that to everyone who reads this blog. Admittedlythat's hard to do.
If you read this blog and relate to something I have said or if a post gives you a new idea you hadn't thought of before, that's great. Nothing I write in this blog is meant to be taken as advice. This blog is just a place for me to express my thoughts and ideas.
March 30, 2010, was the day my life changed forever. That was the day my mom died. I should have posted this on the anniversary of her death. It is not just that day that's hard for me. That day, through Mother's Day, is a difficult time for me.
I wrote the following piece after Mom died. My sister-in-law read it at her funeral for me. I'm proud of it. It shows how committed my mom was to giving me the best life possible.
My mother dedicated her life to me. She was my sole caregiver until the age of eighty-seven. After we had help she was still overseeing everything, making sure my caregivers did everything the right way. We did not get twenty-four-hour help until last August. She was still assisting me at night, by herself, up until that time. Pretty amazing, when you consider she was ninety-one years old.
My mother made sure I didn’t miss out on anything I wanted to do. When I was little I wanted to be in the Girl Scouts. Mom would leave our grocery store to meet my school bus at a stop along the route and take me to my troop meeting. She didn’t want me to be late.
I was in Shriners Hospital for over three months when I was eleven. Mom visited me faithfully. The one day she was unable to visit she sent me a card.
After I graduated Mom drove me to job interviews. When I got a part-time job, she made sure I got there on time every day.
We went on a cruise to Alaska one summer. One of the side trips was flying over Glacier Bay in a little piper cub. I had trouble keeping my balance on the plane. I kept falling over. I was nauseous and scared to death. Mom loved it. She kept saying how beautiful Glacier Bay was. I had to take her word for it. I was too busy praying.
And, how many other eighty-one-year-old women can rock out at a Cher
concert? My mom did.
My mother was my caregiver, cheerleader, my sounding board, and my support system. Without her love and support, I would have accomplished nothing in my life. Thank you, Mom. I love you. I’ll miss you every day.
Being a caregiver is the most important job a person can have. It seems to me that sometimes many caregivers forget that. They come to work with their own agenda of taking personal phone calls and watching television.
I can't count the number of times rude comments have been made to me. Comments regarding my weight and the tone of my voice have been particularly hurtful.
The last instance was just two weeks ago. A caregiver blurted out that I was getting harder to handle. It wasn't the fact that she said it, it was the way she said it that was hurtful. I do all I can to keep my weight down. I'm well aware of the fact that because I'm unable to assist a caregiver very much when they are transferring me, that it may seem like I'm heavier than I actually am. I ask that my caregivers wear a back brace for their protection and mine. Some do, some don't. I have shown the caregiver who complained about my weight, ways to move me that are easier on her back. I have asked the caregiver to wear a back brace whenever she's assisting me. Things are much better now.
A caregiver once told me my voice was annoying. She told me she would record my voice on her phone so that i could hear just how annoying it was. When I reported this incident to the agency, the caregiver was replaced. The entire incident was caused because I'd reduced my hours and the caregiver wanted more hours. She got the hours she wanted. The caregiver was rewarded for her unprofessional behavior rather than being reprimanded.
I have had caregivers who didn't like to be awakened at night. And, they let me know it. If you are caregiver working nights, your job is to be there for your client, not just to sleep. Make sure you get a little rest before your shift begins.
I have written two other posts regarding caregivers. I didn't plan to write another because I don't want it to ever seem like I'm bashing home care agencies or the caregivers they employ. That couldn't be further from the truth. By writing about some of my experiences, over the past seven years, I'm trying to make things better for both the client and the caregiver.
Caregivers should remember to always speak to their clients in a kind and respectful manner. It's not a client's fault if a caregiver is tired or is dealing with personal issues.
Caregivers should keep cell phone use to a minimum when they are working.
If a problem occurs, the agency should find a solution, not just replace someone. It's hard getting used to a new caregiver. It is also hard for a caregiver to get used to a new client.
I've said in a previous post that my biggest wish would be that agencies allow clients to evaluate caregivers.
I've also said that caregivers work long hours sometimes. Home care is costly. Caregivers, however, are underpaid for what they do.
It's okay if a caregiver makes a few phone calls and watches a little television throughout the day. I want my caregivers to have a pleasant experience. But, caregivers should always make sure they talk to a client and check on them regularly to see if they need anything.
Caregivers should let their clients know they care. And, during the hours they are with a client, the client should be their number one priority.
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According to the United Cerebral Palsy Association's website www.ucp.org March is Developmental Disabilities Awareness Month. March 25, 2013, is National Cerebral Palsy Awareness Day.
Cerebral Palsy is a disability that's caused by the brain being damaged or not properly developed. Damage can occur before, during, or shortly after birth. Cerebral Palsy affects movement, coordination, and balance. In some cases, a person's speech is affected.
The three main types are:
Spastic Cerebral Palsy causes a person's arms and legs to be stiff. This makes it difficult for them to move easily. This the type of CP that I have.
Athetoid Cerebral Palsy causes a person to have involuntary movements. People with this type of CP cannot control the movement of their bodies.
Those who have Ataxic Cerebral Palsy have difficulty with balance and depth perception.
People with Mixed Cerebral Palsy have a combination of the types.
Actress/comedienne Geri Jewell was the first disabled person to be given a regular role in a television series. She played Blair's Cousin Geri on Facts of Life. She also has CP. I had the pleasure of having lunch with her when she came to Meramec to speak for their Disability Awareness Day. She was inspiring. I could relate to many of the things she went through growing up.
In 1998, Dr. Jan Brunstrom of St. Louis Children's Hospital, started the Pediatric Neurology Cerebral Palsy Center. She, too, has CP. Imagine having a doctor who truly understands what it's like to have your disability. It must be reassuring and a tremendous asset to a child's treatment
I would have given anything to have had role models like Geri Jewell and Dr. Brunstrom when I was young. Sadly, back then, there was no one to look up to. No one to offer hope. I'm so glad things are different today.
On March 25th please wear green to show support for those with Cerebral Palsy.
Everyone wants to be remembered. Everyone wants to know that they matter. Everyone wants to know they have contributed something to this life. I'll be fifty-six in a few weeks. I have been thinking about what my legacy will be.
I began writing children's stories for a friend who taught preschool. As a result, a little pink bear named Bianca Bear was born. She really is like my baby. I was very protective of her stories. So protective in fact, that when an editor told me that if I ripped the stories apart and re-wrote my entire manuscript, I'd have a better chance of getting a mainstream publishing deal. I couldn't imagine ripping my manuscript apart and starting over. I self-published. Good or bad, it was the choice I made. Bianca Bear is an example of what a true friend is. She's loyal, helpful, and supportive of her friends.
Fifty years from now, if someone stumbles across a copy of THE BUSY WORLD OF BIANCA BEAR, (or finds her blog online) I hope they don't think it's corny. The lessons in the book of friendship, bravery, sharing, and love are timeless. I hope they always remain relevant.
I started a blog for fun. I wanted to find out if I could write something that would interest people. T his blog's purpose is to inform and educate others on the issues and challenges people with disabilities face. I wanted to share a bit of my life with you as well. I have gotten many positive comments. This blog is the most important thing I have ever done. I'll keep writing about the things that are important to me personally, and issues that affect the disabled community. I hope you'll keep reading.
Fifty years from now, I hope all the barriers to disabled people leading full and productive lives have been broken. I hope people who read this blog will see how far people with disabilities have come.
I used to worry that I hadn't done anything that mattered. I know now that my writing contributes to my little corner of the world. This blog is my legacy.
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I have only had one paying job in my life. The rest of the positions I've had have been volunteer positions. Even my teaching job began with my volunteering in the data lab at Meramec. I have volunteered as a teacher's aide, peer consultant and, now, at my library.
It makes me sad if I hear a caregiver say, "that's not in my job description," if I ask them to do something that would help me, but is not technically part of their duties. Most of the time they do what I ask, but let me know they are not required to do it.
Helping others in any way you can is important. Volunteering is important. I love my volunteer job as a greeter at my library. I answer questions, give directions, help patrons find books or just talk to people. The staff has been very supportive and accepting of me. I feel I belong there. I have missed days this winter. When I miss, I always try to make up some time. I know the library appreciates my help. I want to thank the staff for making me feel so welcome.
I understand making money is important. People need paying jobs to provide for themselves and their families. I'm determined to become a freelance writer. I won't stop until I achieve that goal. But, for now, I''m happy volunteering at the library.
My passions are books and writing. The library is the perfect place for me. Find something you are passionate about or find a place where you can make a difference. Give a little of your time. You'll be surprised at how good you 'll feel.
Currency is not always monetary. Currency can be just a smile after you have taken the time to talk to someone lonely. Maybe you're volunteering at the library and you help someone find a book they've been looking for. Their appreciation is your currency. .I think anytime you help someone and know you have made a difference in their lives, the good feeling you get is currency enough.
Money is important but, money isn't everything.
