Perky Pink and the Wild Wheelchair
Perky Pink and the Wild Wheelchair
CHAPTER ONE
MY BIRTH
HEAVEN'S VERY SPECIAL CHILD
A MEETING WAS HELD QUITE FAR FROM EARTH
“It’s time again for another birth”
Said the angels from above,
This special child will need much love.
“His process may seem very slow,
Accomplishments he may not show
And he’ll require extra care
From the folks he may meet on the down there
“He may not run, laugh, or play
His thoughts may seem quite far away
In many ways he won’t adapt
And he’ll will be known as handicapped.
“So let’s be careful where he’s sent
We want his life to be content.
Please, lord, find the parents who
Will do this special job for you.
“They will not realize it right away
The leading role they’re asked to play
But with this child sent from above
Comes stronger faith and richer love.
“And soon they’ll know the privilege given
In caring for the gift from heaven,
Their precious charge, so meek and mild
Is heaven’s very special child.
(Unknown author)
I was born on July 5, 1971 at 5:20p.m weighing 6lb 3oz. It was a complicated birth. I always have had a hard life and I still do. My mom was over joyed because I was her first daughter, after three boys in a town called Lancaster, Wisconsin in Grant County. My doctor was Harold Carey and my nurse was Betty Stolymer.
My name is Kathy Jo Pink. I was named after both of my grandmothers (Catherine Rena), Elizabeth Ertz, and Catherine Weist.
But, there was something definitely wrong with me. At the time of my birth, I couldn’t cry, breathe or suck. When I was three days old, the doctors decided to move me to a larger hospital, two hours away from our home. This caused a great amount of stress on my parents because they were finding themselves driving four hours every day to be with me and my parents had three other children. There I was put into the infant intensive care. They have three stages. When a baby is first put in there, they start at three and progress to stage one. Well, I never left stage three. The doctors thought I would be a vegetable the rest of my life. They suggested that I should be placed in an intuition as soon as I was old enough. My parents wouldn’t give up as long as there was the slightest hope. So, they decided to take care me at home. I was released from the hospital to go home for the first time, when I was three weeks old. This was a great understanding because I had to be fed by a complicated process called gavage feeding which took one to two hours per feeding. This goes into the nose right into the stomach. My parents had to be careful because if it got into me lungs. I would have died. I had to eat five times a day. Most of my aunts are nurses and my immediate family helped out a lot in those days.
Anyway, I was baptisized twice because they didn’t think I would make it. My godparents are Don (decrease) and Catherine schindler. The first celebration took place in the Lancaster hospital. The second one was at the church. We were (and still are) catholic’s. The date was July twenty-fifth. Those attendinding were my parents and my three bothers. Terry, Tim, Tony. It took place at St. Clements.
CHAPTER TWO
MY EARLY YEARS
On, November forth of that same year, when I was four months of age. The doctors discovered that I had cerebral palsy, (see the feeling chapter) but they weren’t sure and so they didn’t tell anybody. The next January, my mom asked the county nurse if it could be cerebral palsy. Finally, when I was three and a half years old, I was diagnosed with cerebral palsy.
So, are you asking what cerebral palsy is? Cerebral means a part of the brain and palsy means jerky movements. It is know as the horrible crippler. It is a birth defect which occurs before, during, or shortly after birth. Although anybody can get cerebral palsy, anytime in his or her life due to a serious illness or accident. Cerebral palsy is a disorder of the central nervous system resulting in very poor motor abilities. Cp stands for cerebral palsy. More then 600,000 people have cp nationally, and 600 people have cp locally. Cp is neither hereditary nor contagious. Cp can not be cured. Someone who has it can’t get ride of it. Some people, who have cp only, have minor disadvantages. For example they with a slight limp. Other people, who have cp, have difficulties reading, walking, moving, hearing, and communicating. It can also be involved with intellectual development. As a result of me having cp, I can’t walk, talk, or feed my self, dress myself, take my self to the bathroom, drive, chew very well, any other little things that I don’t want to write about. Although, I can eat finger food by myself, dress a little of my self and take my self to the bath room if nobody is around to help me. Those things I can do. But they take me a long time to do. As far as eating. When I was six months of age, I returned to a different hospital in Madison because my mom got wore out with my feedings. Then, they made everything a solid and I was spoon feed everything.
When I was four years old, I was selected to be one of the cp poster children. Mike walker was the other cp poster child on with me that year. The highlight of that year was being on the CP Telethon which was held over WMTV Channel 15 in Madison. My Mom got me a Winnie-The-Pooh dress to wear on the telethon. This is when where I got my very first push wheelchair. Before this, I used to have a buggy or somebody would have to carry me. The Lancaster Song Spinners performed that Sunday and
They put me on stage when they were performing. My parents and I attended the Easter Seal parent institute at camp wawbeek, in Wisconsin dells, when I was four. For a week, therapists, speech pathologists, psychologists and social work. There, they could see my every day problems. There were twelve other children who had cp who attended this institute. Our parents all shared with each other. This is where I was introduced to my first communication device, bliss symbols. Bliss symbols are a Canadian picture language. So, I could “talk” without knowing how to read.
I used to go to a CP Clinic in Madison every six months. I also went to the Shriners Hospital for crippled children in Chicago iIllionis.
I had speech ,OT. (Occupational therapy) and PT (Physical Therapy) thru my senior year of high school. I had speech twenty minutes every school day, OT two times a week , and PT a half hour a week at the local hospital.
CHAPTER THREE
MY SCHOOL YEARS
I went to Day Care for children with disabilities in Mt. Ida and Early Childhood in Plattville. Both towns are neighboring towns from Lancaster. I still remember both drivers from both schools.
When I entered kindergarten, I went to the Regular Lancaster Community Schools and I graduated from twelfth grade there. In school, I had to have an aide. That year, I had Mrs. Wilcox for a teacher and Mrs. McLean as my aide. I went in the morning. That year, we had a circus and I was a class clown (not a class clown either. I rode my bike which my Dad leaned about at the Easter Seal Institute and he has fixed up several bikes for me since. I used to to have a walker (like little babies do) and I got around with that in grade school until I got too big for it.
When I was in first grade, my teacher was Mrs. Chadd and my aide was Mrs. Massey. I can’t remember when I got my first electronic communication device called an Auto-Com. It was operated by a magnetic handpiece. I programmed my own vocabulary. The Auto-Com had 128 squares with 59 levels.
In second grade, my teacher was Mrs. Broihan and my aide was Mrs. Bender. That year, I made my First Communion at church. I had my first boyfriend.
In third grade, my teacher was Mrs. Stead and my aide was Mrs. Cohen. I was in a movie called, “Handicapped Children And Their Families, The winning Generation.” It aired on Channel three in Madison.
I’m not going to go in to my other grades like I have been doing up to this point, however, I am going to write about the hi-lights. I didn’t pass fourth grade the first time around, but, I did the second time around. At that time, I was put in the EMR Room (Educational Mentally Retarded) which I didn’t really belong). I belonged in the LD Learning Disability) room.
I had to ride to and from school with the really mentally challenged kids for six long years. I didn’t really like that one bit.
When I was in the fifth grade I got my first electric wheelchair. An electric wheelchair gives me the freedom to move around on my own. I had to learn how to drive it and it did what I wanted it to. As another result of having cp, I used to drool a lot. When I was about to enter Jr. High, I had an operation to stop me from drooling. It was a success! But, I had to be on a clear liquid diet for a month. I got so week that I slept from feeding to feeding.
In high school, I joined Special Olympics. For Special Olympics, I was in bowling and wheelchair races. I got a blue every time. I got a lot of other awards, when I was in school.
When I was a freshman in high school, I kept getting these spells. They looked like seizures, but they weren’t. This happened every day at school. Finally, in December, I was put in the UW hospital in Madison. I can remember this because my friend’s uncle was getting married that Saturday and I was put in the hospital that Wednesday before. The condition was called paroxysmal chorecathetosis with some ballismatic component and the doctors put me on two different medications called valium and ditantin. They really didn’t help. Anyway, I went to the wedding not feeling good at all. When I would have these I felt unloved.
At the end of my freshmen year of high school, I received my apple gs computer and my very first voice synthesizer! When I first heard my voice synthesizer, I felt happy and shocked and I thought wow, this is cool, man, you know.
On October third 1988, I gave my first oral speech alone with the help of my computer I got the end of my freshmen year of high school. I spoke to my parents of EEN children and other interested people. Herbert Grover, the state superintendent was an attended.
In the spring of 1989, CESA 3 (cooperative education service agency) nominated me for the w-case award. Wisconsin council of administrators for exceptional children.) On September fifteenth heard that I won, but I wasn’t presented this until June of the next year. Releases were supposed to be made to the local papers and they weren’t.
When, I was a senior in high school, I got a new communication device called a touch talker. It had minspeak and word strategies in it. Minspeak is the most widely vocabulary encoding system. When I graduated from high school, I walked with my assistance from my senior aide. My wheelchair never enters the gymnasium. I walked everyday of that year to practice for the big event.
Chapter FOUR
College
For the school years of 1990-91 and 1991-92, I went to southwest Wisconsin technical collage in Fennimore. Fennimore is another neighboring town of Lancaster.
The first year, I majored in data entry (which at the time I hated it and was doing that for a living.)
During the spring semester, I took an accounting class and I really liked it. I liked it so well that I returned that next fall majoring in accounting.
Chapter FIVE
Attendants
The rest of my school aids were Mrs.Eck, Ms, Furuseth, Mrs., Mendez, Mrs. Hochmuth, and Mrs., Stefflug. Mrs. Eck was so funny! I was and still am Mrs. Mendez’s adopted kid.
My collage attendants were Shelia Williams and Liz Ladwig. They were both my age.
In the summer of 1987, I got connected with homeward bound. Homeward bound sends home care providers to people’s homes that need help. Some of my providers from homeward bound have been, Anna, Sue, Theresa, Kathy, Jessie, Heather, Judy, Paulette, Cheryl, Shelia, Liz, Ruth, Brenda, and Pam. Anna was my first provider and I just loved her. She was older. We did visiting people in a nursing home, library, ect, some of my other favorite providers were Theresa, and Paulette. They both were older and they both took quite a bit of personal time with me every time they would work with me, which is what I really needed.
I can’t remember when I got my next communication devices called Liberator and Pathfinder. They had the Minspeak application program in them. I can’t remember what the Liberator had in it wheiter it was Word Strategy or Unity. The Pathfinder has Unity in it.
CHAPTER SIX
Feelings
I have been putting off writing this chapter because I know it will be difficult to write. Are you asking your self hoe dose she like being a person living with a disability? Well, I really hate it and I think it really stinks a lot. So, I have decided to dedicate a whole chapter of this book on this subject.
First of all, because I have a disability, I have depression and thought a lot about suicide. I thought about ending my live by stopping feedings, shooting, or cutting myself, or taking an overdose of any kind of medication and holding my breath.
But, I have been working with a counselor since 1992. It is starting to help. Within that time, I have worked with five Mental Health Counselors. Their names are Edith, Jane, Ruth, Gina and Pat. In May of 1994, Gina sent me to a mental hospital because I was sad all the time, really suicidal, couldn’t sleep for weeks.
It was in Boscobel which is about 45 miles from Lancaster. I can remember the day when I was admitted. The gang was getting together that night for Betty’s birthday party. But I had a choice to go to the party and go to the hospital the next day. It was a hard decision to make. But, I did it and made it thru. Betty came to the hospital to see me the day before I came home. During her visit I learned that she was having hearing problems. They put me on Prozac, an antidepressant. That did not help me any. I can remember this one morning in that hospital; I was put in restraints because I was running into people and other things with my wheelchair. We had a meeting that morning in hope of getting out that day. Well I didn’t get out that day.
About a week later I got home, I went to a doctor from Madison about my seizures, he took all my medicine away from me and I have not had any problems since! (Knock on wood!!!)
I was put in Boscobel one more time and in Dubuque, Iowa several of times for Mental Health Reasons. In Dubuque, they have classes, you have to take before you get out to help you to feel better.
Chapter seven
Computers / Internet
I don’t know, but it was sometime in the 1990-1992 time frame, we got hooked up to the Internet at home. It was like a God-send! I didn’t feel as depressed like I was.Then, I found about ACOLUG (augmentative Communication On-Line Users’ Group and Cereal Palsy ListServs. I have several of e-mail addresses. They are kathyjpink@hotmail.com , KathyJoPink@gmail.com , and perkpinkperky@yahoo.com .
Chapter Eight
I’m only going to write about my paying jobs. In the summer of 1989, I was employed by social services thru the JPTA program (job partnership training act.) it was between my junior and senior years of high school. I took the JPTA class in the spring of my junior year. Then, I had to go to a JPTA class every Monday that summer.
I worked at social services that summer on Tuesdays and Thursdays. Ruth Wagner was my attendant there at work. I had three supervisors there. Their names were Shirley Davies, Alene Siss, and Mary Grab Bobltoz. At social services, I worked on my computer writing case notes on clients, articles for the agency newsletter, and stamped envelopes, etc. I cant ever forget this woman by the name Jean Lind. Jean and I became close that summer I worked there. We used to have lunch together which I needed a good friend that understood what I was going thru with my feedings and jean smiled at me every lunch time. (Thanks jean)
For the years of 1992-2008, I have worked for pioneer communication he in Lancaster. It’s a branch off the local telephone company. We type the telephone books. I worked in my home and if questions or problem, I could call in. my boss is Jane Schneider. I started on a computer program called PC- file and then I used “yellow magic”. Why the change, you may ask. It’s because the pc-file, everything had to be typed from scratch and with yellow magic, we can just update the books every year without retyping everything from scratch. I quit because I had Carpel Tunnel Symptoms.
I also worked for Southwest Opportunity Center in Lancaster. It is a place where people with disabilities work. I, first, went on outings with them. Then, I went once a week from nine to three and did only ½ hour of shredding work.
Now, I work for Copper. I write their newsletter. I am the Editor and Chief!
Chapter Nine
Family
My family consists of a father, mother, and three brothers. My dads name is Joe. He used to work at grant-Lafayette co-op (rea) but, my dad along with three other people got offered early retirement. If they didn’t take it their jobs could have been eliminated. Now he is doing several odd jobs for a lot of different people.He also drove School Bus for a while.
My moms name is Shirley mae. There are two Shirley pinks. The other one is my aunt. My mom is an extra help math teacher at winskill elementary school is in Lancaster.
All three of my brothers are engineers. Their names are Terry, Tim, and Tony. Terry and his wife live in California with their two girls, Marie and Shannon. Tim and his wife Cindy have four kids. Their names are mike, Dave, Karen, and christen. They live in Iowa. Tony lives in Milwaukee, Wisconsin and he married Sue. They have three children. Their names are Adam, Steven, and Lindsey.
Chapter Ten
Friends
Some of my dearest friends consist of Karen Latham (decreased)Teresa Vodak, Joyce Kelly,(decreased) and her Family, Joan Brackett, Don (decreased) and Betty Guinn, Maurice and Martha McClean, Lavon Marrow, Jean Lind, Rosa Ropers, Leah Strader, Mary Jane Hermsen, Ruby Jahnke, and Pat Hammes.
I first met Karen when she was a nurse at the Lancaster Community Schools. I don’t remember much back then. I was in Kindergarten with Julie (her daughter) at that time.
Quite a number of years past…
In 2000, I was having a very hard time wanting to live. Karen sent me a cute card with a cat on it.
It was on November 8, 2000. When I out-of-the blue, first called Karen. The first time, she hung up because she thought it was a prank call because I have a disability called Cerebral Palsy, I am severly handicapped (can’t walk, talk, or feed myself) To talk I have a communication device and I use a speakerphone . so, that is how we talked on the phone about every day until I moved to La Farge last July. She told me over about Eric and that saved me several of times.
At That point on we became dear friends. She would come to visit me once a month, when I was still living in Lancaster. We would play Kings corners.
. Teresa is my age. She also has cp. Teresa has an unforgettable smile! We met in the cp clinic. She lives in Madison.
Joyce and family are the first real friends I had. We met when I was nine or ten. I went to school with Ronda, Joyce’s granddaughter. One day Ronda invited me to her house for the first time. She didn’t tell anyone in her family that I was a person living with a disability and boy they were surprised! I have been there many times since. (I think that’s what contributed to my depression.) They live in beetown which is a neighboring town by Lancaster. Joyce has a sister named Ella Blackbourn. Ella and Joyce told me, right to my face everyday for several years that I would be able to walk and get over my cp later in live and boy they were wrong. (never do that to somebody else.) They were also afraid to feed me.
There is a group with Don, Betty, Maurice, Martha and LaVon in, that always chum around together. We have picnics and play cards together. Don and Betty have now moved to Iowa. Martha used to be my aide when I was in kindergarten. In 1993, LaVon lost her husband suddenly due to heart attack.
For more information on Jean, see the employment chapter.
According to a report, as a result of me having cp, some of my parents friends changed but new ones took their place. Most of the people have found it frightening or afraid of hurting me or doing something the wrong way. I’m exposed so much in the community that now nobody seems to notice my disability in our community.
I would like to deciate a poem to between the people that I mentioned at the beginning of the chapter.
Every moment we are together, I’m learning something and that knowledge becomes a permanent part of me. Though my feeling will be different a year from now or ten years from now, part of that is difference is YOU. Because of you, I’m a different person and the person I will grow to become, with or without you by my side will have gotten there partly because of you. If you were not in my life, I could not be who I’m right now nor would I be growing in exactly the same way. Much what I grow toward, and change within myself, has to do with what I respond to in you, what I learn from you, what I understand about my feelings in the dynamics of our relationships.
I do not worry about about our future together since we have already touched each other and affected our lives on so many levels that we can never be totally removed from each others thoughts. A part of me will always be you, and a part of you will always be me. That much is for certain, no matter what else happens.
Chapter Eleven
Easter seals
Wawbeek
A place to experiment and try new things,
A place to express yourself and spread your wings.
A place to renew friendships from the past,
A place to make new ones that will last
A place to get wild or just sit and sigh,
A place where we laugh and sometimes cry,
A place to put yourself to the test,
A place where nobody is second best.
A place you’re not pressured to make grade
A place lasting memories are made
A place we find whatever we seek
A place that we know as camp wawbeek
A special place for special people
Some of us have wheelchairs
Summer, since I was eight, I attended camp wawbeek, whenever I could. It is near the Wisconsin dells. Camp wawbeek is for people that have physical disabilities.
At camp wawbeek, after every meal , we sit around in the dinning hall to sing songs. After that, someone tells us what the activities are until the next meal. Some of the activities are swimming, arts & crafts, nature, dances, cookouts, and campout. Whenever we go off the main camp grounds, we usually go in a big long wagon.
Every year, the last night at camp is vary emotional for everybody. Everybody gets dressed up and we have banquet and a dance. The cooks always fix a delicious meal.
The main camp ground, at camp wawbeek, is called “the hill” which includes the dorms, dining hall, pool, castle, and the nature nook. A person can roam the hill with their electric wheelchair, while off of the hill is a totally different stoy.
My first year at wawbeek, I will never forget. I met Maggie (Margaret Langer). She has spinia bifida. We were in the same group that year. Our counselor was named Ann. Groups are arranged so that the care needed is equal. Over the years, I have met a lot of good friends at camp wawbeek. I cant forget this person named Mary Whalen. She also has spina bifida, like Maggie.
I will never forget this particular day. My group was off of the hill and my counselor was having some time off. My counselor didn’t leave anything that said I needed to be fed. So, when it came to meal time, they sat everything in front of me and said “eat” “or something like that”. I said “feed me because I cant feed myself. This went on for a half hour. Finally, when I was about in tears, wanting to come home or at least call home, they said okay we will feed you, but if you can feed your self you will be in big trouble. To this day there has never been an apology.
In the early years of me going to camp wawbeek, the staff would end the session by singing a song called “remember” at the end of our last meal together. That song broke everybodys hearts because all of us would cry.
Established in 1992, Easter seals developed a respite and recreation (or r&r) (respite for families and recreation for people that have disabilities.) this was initially established to serve only people with severe disabilities and who needed one to one care. In the fall of 1994, Easter seals expanded the acceptance criteria of this program to include people with various disabilities. I have went a number of times. One session I kept going to the bathroom. But, nothing would come. So, my counselor quit putting me on and I had numerous of accidents that session.
Easter Seals is a very important organization to me. It’s an organization where people cpme together where we can act crazy and explore our feelings and love each other wheither in not we are a person just living with just a disability.
Chapter Twelve
Poems
I started the first chapter of this book with poem called “heaven’s vert special child”. It is one of my favorites. In this chapter, I going to write a few more of my favorite poems about people who have disabilities.
Just for today
Just for today I will live through the next 12 hours and not try to tackle all of live’s problems at once.
Just for today I will improve my mind. I will learn something useful. I will read something that requires concentration.
Just for today I will be agreeable. I will look my best
Just for today I will not fined fault with a friend, or relative. I will not try to change anybody but my self.
Just for today I will try to keep a secret. If anybody finds out, it wont count
Just for today I will have a program. I might not follow it exactly, but I will have it.
Just for today I will do to things I don’t want to do, just because I need the discipline.
Just for today I will believe in myself. I will give my best to the world and feel confident that the world will give its best to me.
Difficult times in life can help us grow
There are times when we cant explain the difficulties we face
But one thing is certain there are some difficulties that shape us for a lifetime
And some that leave us only momentarily changed some of us will search deep within our souls for the answer we may or not find but in that searching we may find that the difficulties we face will diminish and we can come accept not only what we’ve come though.
But the pain we’ve experienced, as well (we all have problems some more that others.)
Beatitudes for friends of
People with disabilities
Blessed are you who take the time to listen to our hesitant speech, for you help us know that if we persevere we can be understood.
Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find a heaven of relaxation.
Blessed are you who stand beside us as we embark on new and untied ventures, for our failures will be outweighed by the times we surprise ourselves and you.
Blessed are you who never bid us to “hurry up”
Blessed are you who do not snatch the task from us hands, and do them for us, for often we need time rather then help
Blessed are you who ask for our help, for our greatest need is to be needed.
Blessed are you who by all of these, assure us, that what makes us is not in our physical impairment, not in our wounded nervous systems, but in our god given self which no infirmity can confine.
Without my chair
I’m trying to get through
But I can’t get through
Chapter Thirteen
Interests & hobbies
My favorite sports are swimming and bowling. Believe it or not, I can walk on water alone! It’s amazing isn’t it? Since I can’t walk alone on land.
Are you asking yourself, how can she bowl? Well, they have a wheelchair ramp at the local bowling alley. Somebody puts the ball on the ramp and I push it down the alley.
I collect angels. I used to have three shelves full of them in my bedroom when I used to to live .
Chapter Fourteen
Pets
We have had two dogs. The first one was named max. we had max for a long time until he died. Max was tony’s dog, but I adopted that dog. Our second dog was named lady. I got lady as a collage graduation gift from gary and chris. (he’s a person living with blindness and she, now work in the Boscobel hospital.) we didn’t have lady a year , when we gave her away. I was gone for the day, that my mom and dad gave lady away. I was heartbroken when I had heard the news. Although, I knew it was coming.
Now we have cats and beef cows. The cats came from Shelia Williams. WELL Shelia gave me only one cat and that cat had off-sring.
Chapter Fifteen
Educating The Public
There are four things that need improvement regarding people who happen to have any disability. The first is that society must accept us as we are. We don’t like it when people are staring at us or mocking our movements . Some people with disabilities can’t help the ways we move. Please don’t talk behind our backs. We prefer you ask questions about our disabilities rather than staring at us or mocking our movements We have feelings just like everybody else. The second area of concern is making people with disabilities a part of society . You can help (if you want). If you want to be friends with us (people with disabilities), talk to us, allow us to be active in your group, spend time with us. Life is mor eenjoyable knowing we all have friends. Thirdly, allow people with disabilities to do things by ourselves . We will ask if we want / need your help. The last area of concern is getting more accessible facilities for people who have disabilities.
Families who have a member in their family living with a disability can be very difficult . They face many additional challenges . According to a report that Tony wrote due to me having CP, caused many changes in our family and this caused my family to make adjustments . My parents went through a denial stage.
Trying to understand Cerebral Palsy is very difficult because its sufferers do not share the same symptoms . I remember this sufferer of CP, Dawn Rosenow. We went to high school together for a couple of years. She had O.T. and P.T.. Finally, I asked why she was getting therapy and they told me that Dawn had Cerebral Palsy
CP is a frustrating condition . some sufferers are locked inside themselves. Others have to be cared for like a baby, yet, they have good minds. Still others are unable to walk, some unable to talk, and others can’t control when they have to go to the bathroom.
Chapter Sixteen
Summer Day Camp
When I was younger, there was a Day Camp for kids that had Developmental Disabilities. For a week out of every summer, there used to be a day camp at the fairgrounds in Lancaster. It was five days then it got cut down to four.
The daily schedule consisted of: swimming, singing/music, crafts, games, rest/quiet time, and lunch. The camp ran from 9-3 every day that it ran. My Mom was in charge of the singing/music part and we would have that the first thing every morning of day Camp. Then every year, on the last afternoon of day camp, we would put on a music program for the parents and my Mom was in charge of that every year
Linda and Jean were in charge of this camp. At Day Camp, I met Geraldine (Geri) Mezera, a very good friend of mine. She also had Spinal Bifda like Mary and Maggie. Geri and I used to be campers together . Then, Geri became a counselor . After that, I became a counselor finally.
Chapter Seventeen
Clubs that I have been in
I have been in a number of clubs. I was in 4-H. In 4-H, I took foods and nutrition , crafts, exploring, self-determined, plants, happiness is, adopt-a-friend projects. For the Adopt-a-friend project, I adopted Mary Ready. She lived in the Lancaster Living Center before she died.
Then, I was in SADD (Students Against Drunk Driving) . I didn’t do much in that group because that was my freshmen year of high school and I had a lot of problems that year.
I was in job club andSouthWestern Wisconsin Writter’s Club. The job club met every Wednesday. It started out meeting at the Liberty Apartments in Platteville. (Liberty Apartments are apartments for people with disabilities. I thought about living there at one time.) Job Club is for people with disabilities that have jobs. Writers’ Club usually met twice a month.
Chapter Eighteen
Cornerstone
I used to to go to Cornerstone to let my mom have a break. Cornerstone had eight to ten different Group Homes for people with disabilities (in a two county radius of Grant and Iowa Counties) to live in. I never was a full-time resident there. I stayed there as respite. Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home.Respite programs provide planned short-term and time-limited breaks for families and other unpaid care givers of children with a developmental delay and adults with an intellectual disability in order to support and maintain the primary care giving relationship. Respite also provides a positive experience for the person receiving care.
The people who lived or stayed at Cornerstone had to go to Dayservice. Dayservice was in Dodgeville which is 45 minutes directly away from Lancaster. Why I said directly is because I used to go to Dayservice once a week, regardless if I was at respite or not. They would get me in a van at seven A.M. and they would run their route. (Like a School Bus Route.) At Dayservice, there were classrooms that you were automatically assigned to. There were classes that you had to take in the morning like Current Events, math, and computers. In the afternoons , we would have fun and play games, Once a week, everyone that was good, would go on an outing . My first and most favorite outing was Pizza Hut and Wal-Mart. Some other outings were going to movies , and going bowling. .
I had a boy friend named Aaron at Dayservice. Although , he had another girlfriend (they were engaged to get married). Anyway, after Aaron and I got out of Cornerstone, he would come to my home once afternoon a week to play cards with me.
Chapter Nineteen
Copper
On July first, 2009, I moved to a Copper Adult Family home named The Nathan Garret Home. I like everything, but, my three housemates. Coppers have eight to ten different homes in La Farge. La Farge is about 1-1/2 hours away from Lancaster.
We have music every Tuesday and every Tuesday, in the summertime , we have music-in-the-park. Every Christmas season , we put on a Christmas Program. The first year, that I was there, I played “Jingle Bells”on a piano keyboard .
The day after Father’s Day, 2010, I moved to Serenity Hills 2, which is another one of Copper’s Homes. I like it better here.
On October 1, 2010, I got an Echo-2, communication device. It has Minspeak application program and Unity in it.
Author: Kathy J. Pink
MY BIRTH
HEAVEN'S VERY SPECIAL CHILD
A MEETING WAS HELD QUITE FAR FROM EARTH
“It’s time again for another birth”
Said the angels from above,
This special child will need much love.
“His process may seem very slow,
Accomplishments he may not show
And he’ll require extra care
From the folks he may meet on the down there
“He may not run, laugh, or play
His thoughts may seem quite far away
In many ways he won’t adapt
And he’ll will be known as handicapped.
“So let’s be careful where he’s sent
We want his life to be content.
Please, lord, find the parents who
Will do this special job for you.
“They will not realize it right away
The leading role they’re asked to play
But with this child sent from above
Comes stronger faith and richer love.
“And soon they’ll know the privilege given
In caring for the gift from heaven,
Their precious charge, so meek and mild
Is heaven’s very special child.
(Unknown author)
I was born on July 5, 1971 at 5:20p.m weighing 6lb 3oz. It was a complicated birth. I always have had a hard life and I still do. My mom was over joyed because I was her first daughter, after three boys in a town called Lancaster, Wisconsin in Grant County. My doctor was Harold Carey and my nurse was Betty Stolymer.
My name is Kathy Jo Pink. I was named after both of my grandmothers (Catherine Rena), Elizabeth Ertz, and Catherine Weist.
But, there was something definitely wrong with me. At the time of my birth, I couldn’t cry, breathe or suck. When I was three days old, the doctors decided to move me to a larger hospital, two hours away from our home. This caused a great amount of stress on my parents because they were finding themselves driving four hours every day to be with me and my parents had three other children. There I was put into the infant intensive care. They have three stages. When a baby is first put in there, they start at three and progress to stage one. Well, I never left stage three. The doctors thought I would be a vegetable the rest of my life. They suggested that I should be placed in an intuition as soon as I was old enough. My parents wouldn’t give up as long as there was the slightest hope. So, they decided to take care me at home. I was released from the hospital to go home for the first time, when I was three weeks old. This was a great understanding because I had to be fed by a complicated process called gavage feeding which took one to two hours per feeding. This goes into the nose right into the stomach. My parents had to be careful because if it got into me lungs. I would have died. I had to eat five times a day. Most of my aunts are nurses and my immediate family helped out a lot in those days.
Anyway, I was baptisized twice because they didn’t think I would make it. My godparents are Don (decrease) and Catherine schindler. The first celebration took place in the Lancaster hospital. The second one was at the church. We were (and still are) catholic’s. The date was July twenty-fifth. Those attendinding were my parents and my three bothers. Terry, Tim, Tony. It took place at St. Clements.
CHAPTER TWO
MY EARLY YEARS
On, November forth of that same year, when I was four months of age. The doctors discovered that I had cerebral palsy, (see the feeling chapter) but they weren’t sure and so they didn’t tell anybody. The next January, my mom asked the county nurse if it could be cerebral palsy. Finally, when I was three and a half years old, I was diagnosed with cerebral palsy.
So, are you asking what cerebral palsy is? Cerebral means a part of the brain and palsy means jerky movements. It is know as the horrible crippler. It is a birth defect which occurs before, during, or shortly after birth. Although anybody can get cerebral palsy, anytime in his or her life due to a serious illness or accident. Cerebral palsy is a disorder of the central nervous system resulting in very poor motor abilities. Cp stands for cerebral palsy. More then 600,000 people have cp nationally, and 600 people have cp locally. Cp is neither hereditary nor contagious. Cp can not be cured. Someone who has it can’t get ride of it. Some people, who have cp only, have minor disadvantages. For example they with a slight limp. Other people, who have cp, have difficulties reading, walking, moving, hearing, and communicating. It can also be involved with intellectual development. As a result of me having cp, I can’t walk, talk, or feed my self, dress myself, take my self to the bathroom, drive, chew very well, any other little things that I don’t want to write about. Although, I can eat finger food by myself, dress a little of my self and take my self to the bath room if nobody is around to help me. Those things I can do. But they take me a long time to do. As far as eating. When I was six months of age, I returned to a different hospital in Madison because my mom got wore out with my feedings. Then, they made everything a solid and I was spoon feed everything.
When I was four years old, I was selected to be one of the cp poster children. Mike walker was the other cp poster child on with me that year. The highlight of that year was being on the CP Telethon which was held over WMTV Channel 15 in Madison. My Mom got me a Winnie-The-Pooh dress to wear on the telethon. This is when where I got my very first push wheelchair. Before this, I used to have a buggy or somebody would have to carry me. The Lancaster Song Spinners performed that Sunday and
They put me on stage when they were performing. My parents and I attended the Easter Seal parent institute at camp wawbeek, in Wisconsin dells, when I was four. For a week, therapists, speech pathologists, psychologists and social work. There, they could see my every day problems. There were twelve other children who had cp who attended this institute. Our parents all shared with each other. This is where I was introduced to my first communication device, bliss symbols. Bliss symbols are a Canadian picture language. So, I could “talk” without knowing how to read.
I used to go to a CP Clinic in Madison every six months. I also went to the Shriners Hospital for crippled children in Chicago iIllionis.
I had speech ,OT. (Occupational therapy) and PT (Physical Therapy) thru my senior year of high school. I had speech twenty minutes every school day, OT two times a week , and PT a half hour a week at the local hospital.
CHAPTER THREE
MY SCHOOL YEARS
I went to Day Care for children with disabilities in Mt. Ida and Early Childhood in Plattville. Both towns are neighboring towns from Lancaster. I still remember both drivers from both schools.
When I entered kindergarten, I went to the Regular Lancaster Community Schools and I graduated from twelfth grade there. In school, I had to have an aide. That year, I had Mrs. Wilcox for a teacher and Mrs. McLean as my aide. I went in the morning. That year, we had a circus and I was a class clown (not a class clown either. I rode my bike which my Dad leaned about at the Easter Seal Institute and he has fixed up several bikes for me since. I used to to have a walker (like little babies do) and I got around with that in grade school until I got too big for it.
When I was in first grade, my teacher was Mrs. Chadd and my aide was Mrs. Massey. I can’t remember when I got my first electronic communication device called an Auto-Com. It was operated by a magnetic handpiece. I programmed my own vocabulary. The Auto-Com had 128 squares with 59 levels.
In second grade, my teacher was Mrs. Broihan and my aide was Mrs. Bender. That year, I made my First Communion at church. I had my first boyfriend.
In third grade, my teacher was Mrs. Stead and my aide was Mrs. Cohen. I was in a movie called, “Handicapped Children And Their Families, The winning Generation.” It aired on Channel three in Madison.
I’m not going to go in to my other grades like I have been doing up to this point, however, I am going to write about the hi-lights. I didn’t pass fourth grade the first time around, but, I did the second time around. At that time, I was put in the EMR Room (Educational Mentally Retarded) which I didn’t really belong). I belonged in the LD Learning Disability) room.
I had to ride to and from school with the really mentally challenged kids for six long years. I didn’t really like that one bit.
When I was in the fifth grade I got my first electric wheelchair. An electric wheelchair gives me the freedom to move around on my own. I had to learn how to drive it and it did what I wanted it to. As another result of having cp, I used to drool a lot. When I was about to enter Jr. High, I had an operation to stop me from drooling. It was a success! But, I had to be on a clear liquid diet for a month. I got so week that I slept from feeding to feeding.
In high school, I joined Special Olympics. For Special Olympics, I was in bowling and wheelchair races. I got a blue every time. I got a lot of other awards, when I was in school.
When I was a freshman in high school, I kept getting these spells. They looked like seizures, but they weren’t. This happened every day at school. Finally, in December, I was put in the UW hospital in Madison. I can remember this because my friend’s uncle was getting married that Saturday and I was put in the hospital that Wednesday before. The condition was called paroxysmal chorecathetosis with some ballismatic component and the doctors put me on two different medications called valium and ditantin. They really didn’t help. Anyway, I went to the wedding not feeling good at all. When I would have these I felt unloved.
At the end of my freshmen year of high school, I received my apple gs computer and my very first voice synthesizer! When I first heard my voice synthesizer, I felt happy and shocked and I thought wow, this is cool, man, you know.
On October third 1988, I gave my first oral speech alone with the help of my computer I got the end of my freshmen year of high school. I spoke to my parents of EEN children and other interested people. Herbert Grover, the state superintendent was an attended.
In the spring of 1989, CESA 3 (cooperative education service agency) nominated me for the w-case award. Wisconsin council of administrators for exceptional children.) On September fifteenth heard that I won, but I wasn’t presented this until June of the next year. Releases were supposed to be made to the local papers and they weren’t.
When, I was a senior in high school, I got a new communication device called a touch talker. It had minspeak and word strategies in it. Minspeak is the most widely vocabulary encoding system. When I graduated from high school, I walked with my assistance from my senior aide. My wheelchair never enters the gymnasium. I walked everyday of that year to practice for the big event.
Chapter FOUR
College
For the school years of 1990-91 and 1991-92, I went to southwest Wisconsin technical collage in Fennimore. Fennimore is another neighboring town of Lancaster.
The first year, I majored in data entry (which at the time I hated it and was doing that for a living.)
During the spring semester, I took an accounting class and I really liked it. I liked it so well that I returned that next fall majoring in accounting.
Chapter FIVE
Attendants
The rest of my school aids were Mrs.Eck, Ms, Furuseth, Mrs., Mendez, Mrs. Hochmuth, and Mrs., Stefflug. Mrs. Eck was so funny! I was and still am Mrs. Mendez’s adopted kid.
My collage attendants were Shelia Williams and Liz Ladwig. They were both my age.
In the summer of 1987, I got connected with homeward bound. Homeward bound sends home care providers to people’s homes that need help. Some of my providers from homeward bound have been, Anna, Sue, Theresa, Kathy, Jessie, Heather, Judy, Paulette, Cheryl, Shelia, Liz, Ruth, Brenda, and Pam. Anna was my first provider and I just loved her. She was older. We did visiting people in a nursing home, library, ect, some of my other favorite providers were Theresa, and Paulette. They both were older and they both took quite a bit of personal time with me every time they would work with me, which is what I really needed.
I can’t remember when I got my next communication devices called Liberator and Pathfinder. They had the Minspeak application program in them. I can’t remember what the Liberator had in it wheiter it was Word Strategy or Unity. The Pathfinder has Unity in it.
CHAPTER SIX
Feelings
I have been putting off writing this chapter because I know it will be difficult to write. Are you asking your self hoe dose she like being a person living with a disability? Well, I really hate it and I think it really stinks a lot. So, I have decided to dedicate a whole chapter of this book on this subject.
First of all, because I have a disability, I have depression and thought a lot about suicide. I thought about ending my live by stopping feedings, shooting, or cutting myself, or taking an overdose of any kind of medication and holding my breath.
But, I have been working with a counselor since 1992. It is starting to help. Within that time, I have worked with five Mental Health Counselors. Their names are Edith, Jane, Ruth, Gina and Pat. In May of 1994, Gina sent me to a mental hospital because I was sad all the time, really suicidal, couldn’t sleep for weeks.
It was in Boscobel which is about 45 miles from Lancaster. I can remember the day when I was admitted. The gang was getting together that night for Betty’s birthday party. But I had a choice to go to the party and go to the hospital the next day. It was a hard decision to make. But, I did it and made it thru. Betty came to the hospital to see me the day before I came home. During her visit I learned that she was having hearing problems. They put me on Prozac, an antidepressant. That did not help me any. I can remember this one morning in that hospital; I was put in restraints because I was running into people and other things with my wheelchair. We had a meeting that morning in hope of getting out that day. Well I didn’t get out that day.
About a week later I got home, I went to a doctor from Madison about my seizures, he took all my medicine away from me and I have not had any problems since! (Knock on wood!!!)
I was put in Boscobel one more time and in Dubuque, Iowa several of times for Mental Health Reasons. In Dubuque, they have classes, you have to take before you get out to help you to feel better.
Chapter seven
Computers / Internet
I don’t know, but it was sometime in the 1990-1992 time frame, we got hooked up to the Internet at home. It was like a God-send! I didn’t feel as depressed like I was.Then, I found about ACOLUG (augmentative Communication On-Line Users’ Group and Cereal Palsy ListServs. I have several of e-mail addresses. They are kathyjpink@hotmail.com , KathyJoPink@gmail.com , and perkpinkperky@yahoo.com .
Chapter Eight
I’m only going to write about my paying jobs. In the summer of 1989, I was employed by social services thru the JPTA program (job partnership training act.) it was between my junior and senior years of high school. I took the JPTA class in the spring of my junior year. Then, I had to go to a JPTA class every Monday that summer.
I worked at social services that summer on Tuesdays and Thursdays. Ruth Wagner was my attendant there at work. I had three supervisors there. Their names were Shirley Davies, Alene Siss, and Mary Grab Bobltoz. At social services, I worked on my computer writing case notes on clients, articles for the agency newsletter, and stamped envelopes, etc. I cant ever forget this woman by the name Jean Lind. Jean and I became close that summer I worked there. We used to have lunch together which I needed a good friend that understood what I was going thru with my feedings and jean smiled at me every lunch time. (Thanks jean)
For the years of 1992-2008, I have worked for pioneer communication he in Lancaster. It’s a branch off the local telephone company. We type the telephone books. I worked in my home and if questions or problem, I could call in. my boss is Jane Schneider. I started on a computer program called PC- file and then I used “yellow magic”. Why the change, you may ask. It’s because the pc-file, everything had to be typed from scratch and with yellow magic, we can just update the books every year without retyping everything from scratch. I quit because I had Carpel Tunnel Symptoms.
I also worked for Southwest Opportunity Center in Lancaster. It is a place where people with disabilities work. I, first, went on outings with them. Then, I went once a week from nine to three and did only ½ hour of shredding work.
Now, I work for Copper. I write their newsletter. I am the Editor and Chief!
Chapter Nine
Family
My family consists of a father, mother, and three brothers. My dads name is Joe. He used to work at grant-Lafayette co-op (rea) but, my dad along with three other people got offered early retirement. If they didn’t take it their jobs could have been eliminated. Now he is doing several odd jobs for a lot of different people.He also drove School Bus for a while.
My moms name is Shirley mae. There are two Shirley pinks. The other one is my aunt. My mom is an extra help math teacher at winskill elementary school is in Lancaster.
All three of my brothers are engineers. Their names are Terry, Tim, and Tony. Terry and his wife live in California with their two girls, Marie and Shannon. Tim and his wife Cindy have four kids. Their names are mike, Dave, Karen, and christen. They live in Iowa. Tony lives in Milwaukee, Wisconsin and he married Sue. They have three children. Their names are Adam, Steven, and Lindsey.
Chapter Ten
Friends
Some of my dearest friends consist of Karen Latham (decreased)Teresa Vodak, Joyce Kelly,(decreased) and her Family, Joan Brackett, Don (decreased) and Betty Guinn, Maurice and Martha McClean, Lavon Marrow, Jean Lind, Rosa Ropers, Leah Strader, Mary Jane Hermsen, Ruby Jahnke, and Pat Hammes.
I first met Karen when she was a nurse at the Lancaster Community Schools. I don’t remember much back then. I was in Kindergarten with Julie (her daughter) at that time.
Quite a number of years past…
In 2000, I was having a very hard time wanting to live. Karen sent me a cute card with a cat on it.
It was on November 8, 2000. When I out-of-the blue, first called Karen. The first time, she hung up because she thought it was a prank call because I have a disability called Cerebral Palsy, I am severly handicapped (can’t walk, talk, or feed myself) To talk I have a communication device and I use a speakerphone . so, that is how we talked on the phone about every day until I moved to La Farge last July. She told me over about Eric and that saved me several of times.
At That point on we became dear friends. She would come to visit me once a month, when I was still living in Lancaster. We would play Kings corners.
. Teresa is my age. She also has cp. Teresa has an unforgettable smile! We met in the cp clinic. She lives in Madison.
Joyce and family are the first real friends I had. We met when I was nine or ten. I went to school with Ronda, Joyce’s granddaughter. One day Ronda invited me to her house for the first time. She didn’t tell anyone in her family that I was a person living with a disability and boy they were surprised! I have been there many times since. (I think that’s what contributed to my depression.) They live in beetown which is a neighboring town by Lancaster. Joyce has a sister named Ella Blackbourn. Ella and Joyce told me, right to my face everyday for several years that I would be able to walk and get over my cp later in live and boy they were wrong. (never do that to somebody else.) They were also afraid to feed me.
There is a group with Don, Betty, Maurice, Martha and LaVon in, that always chum around together. We have picnics and play cards together. Don and Betty have now moved to Iowa. Martha used to be my aide when I was in kindergarten. In 1993, LaVon lost her husband suddenly due to heart attack.
For more information on Jean, see the employment chapter.
According to a report, as a result of me having cp, some of my parents friends changed but new ones took their place. Most of the people have found it frightening or afraid of hurting me or doing something the wrong way. I’m exposed so much in the community that now nobody seems to notice my disability in our community.
I would like to deciate a poem to between the people that I mentioned at the beginning of the chapter.
Every moment we are together, I’m learning something and that knowledge becomes a permanent part of me. Though my feeling will be different a year from now or ten years from now, part of that is difference is YOU. Because of you, I’m a different person and the person I will grow to become, with or without you by my side will have gotten there partly because of you. If you were not in my life, I could not be who I’m right now nor would I be growing in exactly the same way. Much what I grow toward, and change within myself, has to do with what I respond to in you, what I learn from you, what I understand about my feelings in the dynamics of our relationships.
I do not worry about about our future together since we have already touched each other and affected our lives on so many levels that we can never be totally removed from each others thoughts. A part of me will always be you, and a part of you will always be me. That much is for certain, no matter what else happens.
Chapter Eleven
Easter seals
Wawbeek
A place to experiment and try new things,
A place to express yourself and spread your wings.
A place to renew friendships from the past,
A place to make new ones that will last
A place to get wild or just sit and sigh,
A place where we laugh and sometimes cry,
A place to put yourself to the test,
A place where nobody is second best.
A place you’re not pressured to make grade
A place lasting memories are made
A place we find whatever we seek
A place that we know as camp wawbeek
A special place for special people
Some of us have wheelchairs
Summer, since I was eight, I attended camp wawbeek, whenever I could. It is near the Wisconsin dells. Camp wawbeek is for people that have physical disabilities.
At camp wawbeek, after every meal , we sit around in the dinning hall to sing songs. After that, someone tells us what the activities are until the next meal. Some of the activities are swimming, arts & crafts, nature, dances, cookouts, and campout. Whenever we go off the main camp grounds, we usually go in a big long wagon.
Every year, the last night at camp is vary emotional for everybody. Everybody gets dressed up and we have banquet and a dance. The cooks always fix a delicious meal.
The main camp ground, at camp wawbeek, is called “the hill” which includes the dorms, dining hall, pool, castle, and the nature nook. A person can roam the hill with their electric wheelchair, while off of the hill is a totally different stoy.
My first year at wawbeek, I will never forget. I met Maggie (Margaret Langer). She has spinia bifida. We were in the same group that year. Our counselor was named Ann. Groups are arranged so that the care needed is equal. Over the years, I have met a lot of good friends at camp wawbeek. I cant forget this person named Mary Whalen. She also has spina bifida, like Maggie.
I will never forget this particular day. My group was off of the hill and my counselor was having some time off. My counselor didn’t leave anything that said I needed to be fed. So, when it came to meal time, they sat everything in front of me and said “eat” “or something like that”. I said “feed me because I cant feed myself. This went on for a half hour. Finally, when I was about in tears, wanting to come home or at least call home, they said okay we will feed you, but if you can feed your self you will be in big trouble. To this day there has never been an apology.
In the early years of me going to camp wawbeek, the staff would end the session by singing a song called “remember” at the end of our last meal together. That song broke everybodys hearts because all of us would cry.
Established in 1992, Easter seals developed a respite and recreation (or r&r) (respite for families and recreation for people that have disabilities.) this was initially established to serve only people with severe disabilities and who needed one to one care. In the fall of 1994, Easter seals expanded the acceptance criteria of this program to include people with various disabilities. I have went a number of times. One session I kept going to the bathroom. But, nothing would come. So, my counselor quit putting me on and I had numerous of accidents that session.
Easter Seals is a very important organization to me. It’s an organization where people cpme together where we can act crazy and explore our feelings and love each other wheither in not we are a person just living with just a disability.
Chapter Twelve
Poems
I started the first chapter of this book with poem called “heaven’s vert special child”. It is one of my favorites. In this chapter, I going to write a few more of my favorite poems about people who have disabilities.
Just for today
Just for today I will live through the next 12 hours and not try to tackle all of live’s problems at once.
Just for today I will improve my mind. I will learn something useful. I will read something that requires concentration.
Just for today I will be agreeable. I will look my best
Just for today I will not fined fault with a friend, or relative. I will not try to change anybody but my self.
Just for today I will try to keep a secret. If anybody finds out, it wont count
Just for today I will have a program. I might not follow it exactly, but I will have it.
Just for today I will do to things I don’t want to do, just because I need the discipline.
Just for today I will believe in myself. I will give my best to the world and feel confident that the world will give its best to me.
Difficult times in life can help us grow
There are times when we cant explain the difficulties we face
But one thing is certain there are some difficulties that shape us for a lifetime
And some that leave us only momentarily changed some of us will search deep within our souls for the answer we may or not find but in that searching we may find that the difficulties we face will diminish and we can come accept not only what we’ve come though.
But the pain we’ve experienced, as well (we all have problems some more that others.)
Beatitudes for friends of
People with disabilities
Blessed are you who take the time to listen to our hesitant speech, for you help us know that if we persevere we can be understood.
Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find a heaven of relaxation.
Blessed are you who stand beside us as we embark on new and untied ventures, for our failures will be outweighed by the times we surprise ourselves and you.
Blessed are you who never bid us to “hurry up”
Blessed are you who do not snatch the task from us hands, and do them for us, for often we need time rather then help
Blessed are you who ask for our help, for our greatest need is to be needed.
Blessed are you who by all of these, assure us, that what makes us is not in our physical impairment, not in our wounded nervous systems, but in our god given self which no infirmity can confine.
Without my chair
I’m trying to get through
But I can’t get through
Chapter Thirteen
Interests & hobbies
My favorite sports are swimming and bowling. Believe it or not, I can walk on water alone! It’s amazing isn’t it? Since I can’t walk alone on land.
Are you asking yourself, how can she bowl? Well, they have a wheelchair ramp at the local bowling alley. Somebody puts the ball on the ramp and I push it down the alley.
I collect angels. I used to have three shelves full of them in my bedroom when I used to to live .
Chapter Fourteen
Pets
We have had two dogs. The first one was named max. we had max for a long time until he died. Max was tony’s dog, but I adopted that dog. Our second dog was named lady. I got lady as a collage graduation gift from gary and chris. (he’s a person living with blindness and she, now work in the Boscobel hospital.) we didn’t have lady a year , when we gave her away. I was gone for the day, that my mom and dad gave lady away. I was heartbroken when I had heard the news. Although, I knew it was coming.
Now we have cats and beef cows. The cats came from Shelia Williams. WELL Shelia gave me only one cat and that cat had off-sring.
Chapter Fifteen
Educating The Public
There are four things that need improvement regarding people who happen to have any disability. The first is that society must accept us as we are. We don’t like it when people are staring at us or mocking our movements . Some people with disabilities can’t help the ways we move. Please don’t talk behind our backs. We prefer you ask questions about our disabilities rather than staring at us or mocking our movements We have feelings just like everybody else. The second area of concern is making people with disabilities a part of society . You can help (if you want). If you want to be friends with us (people with disabilities), talk to us, allow us to be active in your group, spend time with us. Life is mor eenjoyable knowing we all have friends. Thirdly, allow people with disabilities to do things by ourselves . We will ask if we want / need your help. The last area of concern is getting more accessible facilities for people who have disabilities.
Families who have a member in their family living with a disability can be very difficult . They face many additional challenges . According to a report that Tony wrote due to me having CP, caused many changes in our family and this caused my family to make adjustments . My parents went through a denial stage.
Trying to understand Cerebral Palsy is very difficult because its sufferers do not share the same symptoms . I remember this sufferer of CP, Dawn Rosenow. We went to high school together for a couple of years. She had O.T. and P.T.. Finally, I asked why she was getting therapy and they told me that Dawn had Cerebral Palsy
CP is a frustrating condition . some sufferers are locked inside themselves. Others have to be cared for like a baby, yet, they have good minds. Still others are unable to walk, some unable to talk, and others can’t control when they have to go to the bathroom.
Chapter Sixteen
Summer Day Camp
When I was younger, there was a Day Camp for kids that had Developmental Disabilities. For a week out of every summer, there used to be a day camp at the fairgrounds in Lancaster. It was five days then it got cut down to four.
The daily schedule consisted of: swimming, singing/music, crafts, games, rest/quiet time, and lunch. The camp ran from 9-3 every day that it ran. My Mom was in charge of the singing/music part and we would have that the first thing every morning of day Camp. Then every year, on the last afternoon of day camp, we would put on a music program for the parents and my Mom was in charge of that every year
Linda and Jean were in charge of this camp. At Day Camp, I met Geraldine (Geri) Mezera, a very good friend of mine. She also had Spinal Bifda like Mary and Maggie. Geri and I used to be campers together . Then, Geri became a counselor . After that, I became a counselor finally.
Chapter Seventeen
Clubs that I have been in
I have been in a number of clubs. I was in 4-H. In 4-H, I took foods and nutrition , crafts, exploring, self-determined, plants, happiness is, adopt-a-friend projects. For the Adopt-a-friend project, I adopted Mary Ready. She lived in the Lancaster Living Center before she died.
Then, I was in SADD (Students Against Drunk Driving) . I didn’t do much in that group because that was my freshmen year of high school and I had a lot of problems that year.
I was in job club andSouthWestern Wisconsin Writter’s Club. The job club met every Wednesday. It started out meeting at the Liberty Apartments in Platteville. (Liberty Apartments are apartments for people with disabilities. I thought about living there at one time.) Job Club is for people with disabilities that have jobs. Writers’ Club usually met twice a month.
Chapter Eighteen
Cornerstone
I used to to go to Cornerstone to let my mom have a break. Cornerstone had eight to ten different Group Homes for people with disabilities (in a two county radius of Grant and Iowa Counties) to live in. I never was a full-time resident there. I stayed there as respite. Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the home.Respite programs provide planned short-term and time-limited breaks for families and other unpaid care givers of children with a developmental delay and adults with an intellectual disability in order to support and maintain the primary care giving relationship. Respite also provides a positive experience for the person receiving care.
The people who lived or stayed at Cornerstone had to go to Dayservice. Dayservice was in Dodgeville which is 45 minutes directly away from Lancaster. Why I said directly is because I used to go to Dayservice once a week, regardless if I was at respite or not. They would get me in a van at seven A.M. and they would run their route. (Like a School Bus Route.) At Dayservice, there were classrooms that you were automatically assigned to. There were classes that you had to take in the morning like Current Events, math, and computers. In the afternoons , we would have fun and play games, Once a week, everyone that was good, would go on an outing . My first and most favorite outing was Pizza Hut and Wal-Mart. Some other outings were going to movies , and going bowling. .
I had a boy friend named Aaron at Dayservice. Although , he had another girlfriend (they were engaged to get married). Anyway, after Aaron and I got out of Cornerstone, he would come to my home once afternoon a week to play cards with me.
Chapter Nineteen
Copper
On July first, 2009, I moved to a Copper Adult Family home named The Nathan Garret Home. I like everything, but, my three housemates. Coppers have eight to ten different homes in La Farge. La Farge is about 1-1/2 hours away from Lancaster.
We have music every Tuesday and every Tuesday, in the summertime , we have music-in-the-park. Every Christmas season , we put on a Christmas Program. The first year, that I was there, I played “Jingle Bells”on a piano keyboard .
The day after Father’s Day, 2010, I moved to Serenity Hills 2, which is another one of Copper’s Homes. I like it better here.
On October 1, 2010, I got an Echo-2, communication device. It has Minspeak application program and Unity in it.
Author: Kathy J. Pink