Nadiene: An Extraodinary Girl

A children's short short story about a girl with cerebral palsy written in 4/2001

Meet Nadiene

To say that you will never meet someone with a disability is like saying that you will never meet an African American, Hispanic, or Asian American. These days it is just not possible to get through life without meeting a person like Nadiene.

You see Nadiene is eight-years-old and has Cerebral Palsy. She had something similar to a stroke (where oxygen to the brain is cut off for a brief time) at or before birth, which damaged parts of her brain. Therefore she uses a wheelchair because her motor coordination is not as well-developed as her classmates. She goes to a regular public school class each day. The school has had to make a few accommodations. The school is somewhat old but the accommodations where made under the 1990 Americans with Disabilities Act (ADA) federal law. The school was able to make the necessary reasonable changes with the help of federal aid.

Nadiene is a kind, caring person and more than anything loves to make friends. She has a hard time though because many of the students are scared of her wheelchair. The wheelchair helps her lead as much a normal life as she possible can. The friends she does have have learned that the wheelchair is like her legs. Nadiene’s friends find it fun to watch Nadiene do trick turns with her wheelchair.

Cerebral Palsy: The Disability

Ok now that you know a little bit about who Nadiene is as a person, let me catch you up to date on her disability. Cerebral palsy is a blanket term for those who have had brain damage at or before birth. The newborn with cerebral palsy suffers from lack of motor abilities and possibly mental defects. Cerebral means having to do with the brain and palsy means paralysis. Therefore those who have this disability have some lack of ability to do something. Motor coordination and or lack of muscle is usually what distinguishes them from a crowd. Just remember though that even that is not a foolproof way to know. The only way to know for sure is by asking.

There is no one cause of cerebral palsy. Unfortunately, premature babies are the most at risk for acquiring the disability because they are not fully developed when they are born. Nadiene was born at 30 week. The basic thing to remember is that lungs are one of the last organs to develop so that when a baby is born earlier than 36-weeks there is a likelihood of some damage to the brain and/or other organs. The good news is that doctors know much more than they do even when Nadiene was born. Technology keeps improving as the doctors learn more about the brain.

When Nadiene was born she was immediately placed in an incubator to keep her warm and to allow her to get more oxygen to her lungs and brain. She also had special tubes that fed her because she had not learned the behavior of sucking which newborns usually learn instinctually. Her parents and brother and sister were allowed to see Nadiene for very brief amounts of time each day. Her Mom would come during her lunch break. Nadiene's Mom had to go back to work to pay the medical expenses that were rising fast due to her daughters condition.

Her mom considered the times during her lunch hour very special. These times were the one time from which she had to bond with her daughter. She read somewhere that bonding with a sickly newborn was important to both the newborn and the parent. She would sing lullabies and pray during these times.

The faith of the family is strong and the church community was active in the care and well-being of Nadiene. There were several women who would come hold Nadiene during the times in which Nadiene’s mom could not get away from her job as an Office Manager. The pastor and other clergy would also come and pray with the family in regards to Nadiene’s health and safety.

Just as no two people are the same, neither are any two people with cerebral palsy. The reason is because the damage to the brain is never the same. There are many kids and even adults like her all around the world. She knows a lot about her disability and loves to share the information with others so ask her some day. Don’t assume you know her if you have never talked to her.

Many people with disabilities are very open to talking about their disabilities when approached. The thing many of them dislike the most is when people assume that they are dumb just because they walk funny or sit in a wheelchair. Once you get to know the person they may even freely give you information regarding their particular disability.

Nadiene is prone to having older people come up to her family and say “How sad, I’m sorry.” Nadiene thinks, ‘What are they sorry about? Did they bump into my bags? No!’ What they are sorry about is simple: ‘They are sorry I am this way.’ This is a usual occurrence for her and her family. Yet they have learned to deal with the disability and have gone on with their lives. The fact that Nadiene has a disability does not even enter their minds anymore.

Yeah, occasionally Nadiene thinks ‘Why Me?’ but she moves on quickly. She knows that there is some reason why she was chosen as the disabled one. There is a purpose that she will fulfill. Right now she is only thinking of the beach party she has been invited to this coming weekend.

Therapy & Surgery

She does have to go to therapy on Wednesdays for conditioning and sees her leg doctor quite frequently. She hates therapy because ‘it hurts.’ The way they must stretch the muscles can be very painful. She also practices her walking every night and has exercises she must do with her parents help to keep her muscles from tightening up too tight. She has also been in and out of the hospital a couple of times so that the doctor can do surgery to lengthen (or cut) the tendon in her ankles and knees. The doctor does this because her legs don’t grow like yours do. She has always loved the attention she gets there at the hospital. Flowers, candy, stuffed animals – the works. She feels like a queen for a few days.

Therapy and surgeries will continue for another eight or nine years depending on when she stops growing. The therapists are even saying that she should continue therapy for the rest of her life so that her muscles do not tighten up. The more limber the muscles in her limbs the better off she will be in getting around in life.

Family Life

Nadiene lives in a family with a mom and dad, as well as a brother and sister. The family has regular outings together. They go to the park and have picnics on the grass where she and her siblings like to roll down the big grassy hill. She also likes to go down the slide with the aide of her brother who holds her upright.She likes the slide because it zig zags down a man-made hill and has a dragon's head at the bottom.

After a day at the park, they either go get an ice cream cone or go to a movie. Her favorite movie is The Little Mermaid®. She thinks that Eric is handsome and recently received the movie for her birthday.

The other thing the family likes to do on particularly warm day is walk along the beach. She has a specially made stroller with ribbed wheels to handle the sand and shells. Sometimes when the water is warm her parents take her out of the stroller for a quick wade in the water. Her parents hold her hands and swing her through the water as the waves come crashing down on the wet sand. Nadiene loves that the best.

If there are not many people on the beach she gets out of her stroller and sits in the wet sand with a beach chair to support her and she digs for sand crabs. She likes to let the crabs crawl through her fingers. ‘They tickle,’ she says.

Nadiene’s disability does not stop her. She lives as normal of a life as anyone her age. Her family has always treated her as they would any other member of the family. She usually has friends over on the weekends. Her plans are to become a social worker and help others less fortunate than herself.

Church

On Sundays, she likes to go to Sunday School and the church service. Nadiene says ‘I feel accepted for who I am here. They care about me as a person not as a cripple.’ Her parents and siblings are partially credited here because they have educated the teachers and the congregation of their church regarding cerebral palsy and disabilities in general.

Nadiene is also an active acolyte in the church’s service. The sanctuary is set up especially for her and several other older adults that use walkers and wheelchairs. The candles she must light and extinguish during and after the service are lowered to a level she can reach. She finds the help she gives in the service rewarding.

Around the church there are special ramps she uses to get around the steps. Law now requires the ramps. Many years ago it was up to the individual and family to figure ways around these obstacles. There were and still are a few places that discriminate against persons with disabilities. It was not until 1970 that it became mandatory by law for new and renovated buildings. Otherwise the disabled person has to hope that the owner of the building cares enough to accommodate the person with a disability. Smaller rural towns are even worse for that reason. Nadiene’s parents chose to live in dense urban area. All of this is not to say that there are not persons with disabilities in rural towns.

School

Did you know there is a Nadiene is in your best friend’s class? That’s right, she goes to the same school as you. She loves to learn and has a great capacity for taking in what she sees and reads in class. She is 8-years-old, yet she is in the regular class with other able-bodied students her age. She gets better grades than her best friend who does not pay attention in class. Nadiene’s favorite subjects are reading and spelling. She is not too good at Math but gets by quite well. She loves science projects, though.

She is like you! Her favorite activity at school is 4-Square. I bet you did not know that because you have never asked. Next time you see Nadiene, ask her to play, I am sure she would love to play. She will even teach you how to play if you don’t already know how.

After school she goes to her sitter’s and does her homework. After she finishes her homework she loves to play Sorry™ with the other kids at the sitter’s. She is also a member of Brownie Scouts and goes on most of the outings with the scouts.

After School Activities: Horseback Riding

Nadiene is also a member of a therapeutic riding club in nearby town. She goes horseback riding every week on Tuesday afternoons and Saturday mornings. Did you know that just last week she entered a horse show and won top prize for her division and got a trophy. She belongs to a special club that works with her and the degree to which she is able to do things. She usually has a side walker. She is now considered a more experienced rider and can steer her own horse with accuracy.

A few of her friends in the club can walk and some even have speech impairments. All of them have a disability of one sort or another. There are mental and physical disabilities that the horseback riding club has as members. No one is treated unfairly or different than the next. Just as no two people are the same, neither are disabilities the same.

Nadiene has tried all different many different types of riding styles and finds that she likes the Western saddle the best because it fits her snuggly and she does not have to worry about slipping to one side as often. The side walker is often needed only to make sure her foot stays in the stirrup and to run their finger down her back to straighten the back. She has told them that she would rather have them do that then be told in front of the whole group of riders in her class, she says that embarrasses her.

Endnote

Nadiene is a fictitious character but is based on the author's real life experiences. There have been some changes to the character herself but most of the encounters and experiences are real. There are many people that are not sure how to act when coming face-to-face with someone with a disability.

The article is meant as a starting point to learn what to do if you were to see some one with cerebral palsy and or any physical disability. To learn further about cerebral palsy and other disabilities I suggest you start by using the internet search engines and typing in cerebral palsy, physical disabilities, and or disability in general. You may also find numerous books on the topic at your local library.

Have fun learning more and if you want to contact me please feel free to e-mail me at [e-mail].