It’s hard growing up with Cerebral Palsy, wanting to be just like everyone else!
This story is about Lydia. Lydia is 23 and I have known her since she was just 18. A beautiful young lady with a charismatic personality and a smile that makes you smile. Lydia lives with her Mother and Father. She has an older sister who has moved out and is married. Last year her and her husband had their first child.
Lydia is very often sad and frustrated. We talked about her life in school. She was integrated into a regular school system. She attended school with children without a disability. I thought this would have been a good thing… but no. Lydia said the other students were not mean and some even helped her a little but what she hated the most is no one wanted to talk to her… no one wanted to be her friend… she was very lonely.
Lydia can use her hand somewhat more than most people with Cerebral Palsy. She cannot walk and her speech is very difficult to understand for most people. She has a communication device but she does not like to use it. Her parents treat her as if she is still a child. It seems they don’t want her to feel the feelings all young adults feel. Lydia is “Boy Crazy!!”
Lydia has had boyfriends who also have a disability. But she wants to date boys who don’t. I have heard her desperate attempts at finding a nice young man to date. To meet someone who is not disabled is very difficult for most disabled people. Lydia try’s dating website and “MySpace” to meet men. Everyone worries she may be taken advantage of by some of them.
Lydia wants to fall in love, make love for the first time, get a job, move out of her parents house, get married and have children… live happily ever after!! She thinks dating is easy if you are not disabled… I tell her that is not true. The things she goes through, boys not calling when they say they are going to, not liking her as much as she like them and so on… is something all women who are dating go through…
I see her in a big hurry to find a man… she is now 23.. still so young. There is a lot of time to find your true love. Looking around at her friends here… many are alone all of their lives, she feels a sense of urgency… she worries she will become one of them in twenty years. She may. It is very difficult for people with Cerebral Palsy to meet people. Most have extreme limitations on where they can go and very few have the opportunity to socialize. I am hoping as the community is becoming more educated about disabled people that things will change. I can see a future where we all can reach out and help offer some ways to open up their worlds to them..
Hang in there Lydia, the world is changing slowly… hopefully sooner than later.
Sunday, July 19, 2009
My Best Friend Niki
My Best Friend Niki
Niki and I became instant friends six years ago. She has Cerebral Palsy, since birth. Niki was born in Philadelphia, 43 years ago. She is a beautiful black woman who has achieved many things in her life despite her disability. She has many piercing’s and tattoos. She lives with her nineteen-year-old son in a three-bedroom apartment. Niki has attendants, who come in and help her with things like cooking, shopping, laundry, house cleaning, showering, getting dressed, and eating.
Niki walks on her knees at home and uses a manual or electric wheelchair, (affectionately named “The Beast”), when she goes out. She went to college and earned a degree in business and owns two businesses.
We traveled to Sacramento and participated in the writing of SB1270, (Senate Bill 1270, for the rights of the disabled), in 2007 and 2008. We have given speeches to many different people regarding self-employment for people with disabilities. In January of 2008, we started a community website for disabled people that is similar to “MYSPACE” called www.able2beme.com .
Niki and I have traveled many places together, both for business and pleasure. We took a trip to Philadelphia, Penn., where Niki was born, for a week in 2007. While we were there she met her biological father and his family for the first time. She stayed with relatives and we met with the web designers of our web site. We had a great time and we are going back in 2010 for her family reunion.
Niki and her son Brandon have traveled to Oregon with me to visit my parents. We went camping with my family in Oregon one summer. We took a trip to New Mexico to visit a good friend of Niki’s that moved there. We enjoy traveling to my hometown of Redding, Ca. to visit my sister and brother-in-law. On those trips we always go to the casinos and gamble (hopefully win!!)
We like to listen to music and dance and go out to clubs and events. Everyone in my family loves Niki and she is very close to my five grandchildren, my children and my parents, (she and her son are part of the family!). Being around Niki has been wonderful for my grandchildren. They don’t see her disability and are openly comfortable around anyone in a wheelchair or with a disability. Seeing the way they see no difference in people makes me wonder why our community is not more forthright in bringing people with disabilities into our schools, to help to educate our young against discriminating or feeling uncomfortable around people with disabilities. Even my small grandchildren are eager to help feed Niki, sit and play with her, talk to her and care for her.
My life is so blessed to have her as my good friend. I thank God every day for opening my life to such a special friend… I love you Niki!!
I met a true friend named Charles
I met a true friend named Charles… born in New York /city with Cerebral Palsy.
When I met him he was 42 years old. He lay prone in his wheelchair and had to have both his hands tied down due to the severe, involuntary spastic movements of his arms.
Charles could speak some words that were not only difficult for him to say but also very difficult to understand. He mainly communicated with yes’s and no’s, happy and sad facial expressions. When Charles was having a good day his smile lit up the room and my heart. He enjoyed reading (listening on the computer) about the New York Yankees…. He also like to watch WWF wrestling and wanted to read about current wrestling news.
Charles used a device called a clicker to navigate on the computer. A large button connected to a keyboard using special programs allowed Charles to do spelling and mathematics. The program would ask him to spell or do math (his favorite!), then slowly highlight the answer choices. When the correct answer was highlighted Charles would move his chin to click the button and make his choice. He also worked with his communication device which was very similar, yet progress was slow he enjoyed the freedom of communication.
Charles lived with his elderly mother in an upstairs apartment. He had to be carried upstairs and his wheelchair was left down stairs because it was too big for the small apartment. He spent his time at home in bed.
I quickly became his friend. When he was uncomfortable or his hand were not tied the way he liked them he would find a way to communicate to those he was with, asking them to bring him to me so I could retie his hands and arms for him. We spend much of our time together talking about why he was sad.
Charles wanted to move out of his mother’s home and into a group home, he loved her dearly but as she grew older she was having a harder time caring for him. Family members would come over to help but he felt like a group home with others like him was where he wanted to live. He wanted to go on trips and have friend like the other people he knew with Cerebral Palsy. He wanted a girlfriend, to go out to a movie, go out to eat and other things his friend did. Many people with Cerebral Palsy, even those with supportive families, move out of their home when they become adults, just like anyone else without a disability. They either move on their own with the help of assistants or to a group home.
His mother had Conservatorship of him and did not want him to leave her. Conservatorship of a disabled person… is a person becoming responsible for the collection, preservation and investment of the incapacitated person’s property. They must use the property for the support, care and benefit of the protected individual. A conservator has a duty of loyalty and may not use any of the protected person’s assets for personal benefit. They have total control over their lives and make all decisions for them.
It was a sad fact of Charles life that he would never be able to move, unless his mother passed away. Many people tried to talk her into letting him go to a group home. Telling her it would be good for both of them to enjoy their lives. She would not hear of it… this idea was not an option.
I new Charles for four and a half years and loved him dearly…. He passed away at age 43 in 2008 from heart failure…. I lost a dear friend that day, I will never forget. My life was blessed to have had he wonderful opportunity to become your friend… Rest in Peace Charles….
When I met him he was 42 years old. He lay prone in his wheelchair and had to have both his hands tied down due to the severe, involuntary spastic movements of his arms.
Charles could speak some words that were not only difficult for him to say but also very difficult to understand. He mainly communicated with yes’s and no’s, happy and sad facial expressions. When Charles was having a good day his smile lit up the room and my heart. He enjoyed reading (listening on the computer) about the New York Yankees…. He also like to watch WWF wrestling and wanted to read about current wrestling news.
Charles used a device called a clicker to navigate on the computer. A large button connected to a keyboard using special programs allowed Charles to do spelling and mathematics. The program would ask him to spell or do math (his favorite!), then slowly highlight the answer choices. When the correct answer was highlighted Charles would move his chin to click the button and make his choice. He also worked with his communication device which was very similar, yet progress was slow he enjoyed the freedom of communication.
Charles lived with his elderly mother in an upstairs apartment. He had to be carried upstairs and his wheelchair was left down stairs because it was too big for the small apartment. He spent his time at home in bed.
I quickly became his friend. When he was uncomfortable or his hand were not tied the way he liked them he would find a way to communicate to those he was with, asking them to bring him to me so I could retie his hands and arms for him. We spend much of our time together talking about why he was sad.
Charles wanted to move out of his mother’s home and into a group home, he loved her dearly but as she grew older she was having a harder time caring for him. Family members would come over to help but he felt like a group home with others like him was where he wanted to live. He wanted to go on trips and have friend like the other people he knew with Cerebral Palsy. He wanted a girlfriend, to go out to a movie, go out to eat and other things his friend did. Many people with Cerebral Palsy, even those with supportive families, move out of their home when they become adults, just like anyone else without a disability. They either move on their own with the help of assistants or to a group home.
His mother had Conservatorship of him and did not want him to leave her. Conservatorship of a disabled person… is a person becoming responsible for the collection, preservation and investment of the incapacitated person’s property. They must use the property for the support, care and benefit of the protected individual. A conservator has a duty of loyalty and may not use any of the protected person’s assets for personal benefit. They have total control over their lives and make all decisions for them.
It was a sad fact of Charles life that he would never be able to move, unless his mother passed away. Many people tried to talk her into letting him go to a group home. Telling her it would be good for both of them to enjoy their lives. She would not hear of it… this idea was not an option.
I new Charles for four and a half years and loved him dearly…. He passed away at age 43 in 2008 from heart failure…. I lost a dear friend that day, I will never forget. My life was blessed to have had he wonderful opportunity to become your friend… Rest in Peace Charles….
Friday, July 10, 2009
Clouded is my Mind By Miranda Lingerfelt
Clouded is my Mind
By Miranda Lingerfelt
Sometimes I wonder, will I ever be free?
To be the person I want to be?
Will I ever find the real me?
I’m, twisted and tangled. Mangled in a web of painful emotions. I’ve been cursed by an evil potion. With everyday that passes by, I ask myself, why? I’m a web of painful emotions barely going through the motions. My soul slashed with a knife. What a miserable life.
Every night, I lay me down to sleep, I cry. No matter how hard I try, I can’t escape this gut wrenching pain, driving me insane.
Trapped in a black hole, tortured by screams, silent as the darkness ensnared, writhing me, my pain Why can’t anyone see? What a nightmare this is? Doesn’t anyone care? This is so unfair!
All the dreams I once had, drifted away. I am slowly drowning
in a sea of broken dreams. No one hears my screams. It seams there’s nothing left to say.
What have I done so wrong? In this world, do I belong? I’m a bird locked in a cage. Consumed by remarkable rage. With broken wings, I can sing or fly no more.
The pain, too difficult to endure. My soul’s slowly dying. I know, I must keep trying.Someone set me free. My dreams, lost in a sea of misery. Upon me, shine a light, repair my lost sight.
I’m blind, clouded in my mind. I’ve cried so many years poisoned by a world engrossed with wickedness inside me. I feel a horrifying sickness. All I want is to smile; it’s been a long while. But I can’t seem to wake from this nightmare. Please someone show me they care, set me free! Relinquish me, unfurl my wings.
Allow me to sing.
Only then will I fly happy and free.
Thursday, July 9, 2009
What is Cerebral Palsy?
Cerebral palsy (CP) is a term compassing a group of conditions that cause physical disability in human development. Normally it is a non-progressive motor, non-contagious physical disabilityhuman development.
Cerebral refers to the cerebrum, which is the affected area of the brain. Palsy refers to disorder of movement. It is caused by damage to the motor control centers of the developing brain. Cerebral Palsy can occur during pregnancy (about 75 percent), during childbirth (about 5 percent) or after birth (about 15 percent) up to about age three.
Cerebral palsy is actually a group of permanent disorders of the development of movement and posture, causing activity limitation. The motor disorders of cerebral palsy are often not the only disturbances. There can be problems with sensation, perception, cognition, communication, and behavior problems.
There is no cure for CP. Doctor offer the treatment and prevention of complications arising from CP's effects.
I won’t bite you!!
Six years ago I started working as an Instructor, teaching computers, the internet, emailing and business practices to students with a disability called Cerebral Palsy.
I now see both sides of life that many people will never see…. I want to share it with you and give you something you cannot buy and something some people never get their entire lives..
We have all seen someone who is in a wheel chair, maybe they drool, face and body contorted, speech is difficult or they can’t speak. They look so different from the people we usually see. They may not smile at you because they cannot, but there may be a smile inside for you…There may have someone with them who is helping them, pushing their wheel chair, helping them communicate, feeding them or taking them to the restroom.
We feel sorry for them, uncomfortable looking at them, we look away, we feel afraid, we think we could never live like that, we think we would rather not live at all, we are curious about them and their lives…
I have become friends with many people who have a disability. My life and my family’s lives have changed for the best, including my parents, children and and my grandchildren.
My students and I talk about many things…many want you to know them like you would anyone else you meet… "don’t treat me special.." "don’t feel uncomfortable around me, I know I look different from you but we are the same inside."
My body doesn’t look the same as yours and it doesn’t work they way it should, my voice may never be heard… But I think and feel much the same as all of you who are afraid of me..
"I wish I could walk.. I want to be able to talk, I want to go out on a date, I want to fall in love, I want to drive a car, I want to eat with a knife and fork and chew my food, I want to use the bathroom by myself, I don’t want to drool, I want to get married and have children, I want to have a job and make money, own a home, live a happy life and grow old, the same as everyone else... like you. Are you SURPRISED to hear this???
My life is very hard work… but like you I have to do the best I can with what I have been given.
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