|December 1998 Issue||
Our heartfelt thanks to Tamara Rampold for organizing our 2nd annual picnic, a clown was present to entertain children and adults alike. All age groups were represented from Madelyn Harner, 6 months, to Jackie Droste, who also attended our picnic last year. Our web site was mentioned in Early Intervention, the quarterly newsletter of the Illinois Early Childhood Intervention Clearinghouse, Vol. 12, Issue 3, p. 5, and in Down Syndrome News and Update, A publication of The Down Syndrome Educational Trust, Vol. 1, No. 2, October 1998, p. 96.
STARnet Illinois Region IV Workshops
Parent Liaison. A parent liaison is a support for you and your family and a bridge from you to the professionals If you would like contact with a Parent Liaison call Debbie Douglas at Child and Family Connections: 1 (888) 594-8364 or 257-8909.
Play Pals. Eight-week session starting in November. Location: St. Anthony's Wellness Center, Alton Square Mall. Various day and evening sessions for three age groups:
Natural Ties' mission is to increase awareness of the need for full participation in college communities by creating friendships between young adults with and without disabilities. The long-term goal of Natural Ties is to change the way the mainstream society perceives and interacts with individuals with disabilities. Natural Ties uses one-on-one friendships to open the doors to mainstream organizations, and the change their attitudes, behavior, and ultimately the policies, of mainstream individuals and organizations. The St. Louis chapter has an e-mail at: email@example.com and their mailing address is P.O. Box 19739, St. Louis, MO 63144-9739. To find out more about developing a new friendship and making communities more inclusive, contact:
Natural TiesResearch on aging looking for families to participate in study. The Center on Aging at Bradley University in Peoria, Illinois is conducting a nationwide study of families that have an adult (22 or over) son or daughter with Down syndrome or other form of mental retardation living at home. The study will examine both the positive and negative aspects of living with an adult son or daughter who has a life-long disability. The researchers are looking for a thousand families to interview. The study costs nothing, and will be conducted over the telephone. All information will remain confidential. Please consider contributing your input into this valuable research.
To find out more or to participate call 1 (800) 244-4470. The project coordinator is Dottie McKenney. The director of the Center on Aging is Dr. Rachel Pruchno.
Family Fights School District over Music Therapy. St. Peters parents want the treatment included in the special education of their 5-year-old girl by Diane Toroian, St. Louis Post-Dispatch, July 15, 1998, p. B1 - B5.
For two years, Colleen Reichert and her husband, Craig, have been demanding that the Fort Zumwalt School District include music therapy in Bridget's education. They are taking their case before a state panel next month and have filed a complaint with the Department of Elementary and Secondary Education. They say the district is violating the Individuals with Disabilities Education Act, which says school districts must provide for a "free and appropriate education."
Music therapy has been just like magic potion. Bridget will always have disabilities, but this will be the difference between whether or not she will speak and read," said Reichert.[...]
Bridget was born with Down syndrome but was not diagnosed as autistic until she was 5 - almost two years after she first showed symptoms.
"Her language was developing normally, but then it started to go away. We wouldn't get the kisses and the eye contact. She was holding her head down a lot", said Reichert. "We knew something wasn't quite right, but the one thing she did do was continue to sing."
This Marriage Must Stand... Through Ups and Down by Eric Adler October 3, 1998. All content © 1998 The Kansas City Star
It's the song Jim chose for Jodi. Jim Mason and Jodi Zimmerman, who stand face-to-face and hand-in-hand at the altar at this Sept. 12 wedding.
He: 28, short and round in his white tie and black tux. She: 31, short and not as round in her lace and satin gown.
Jerry Daily, the pastor, asks Jim to repeat after him. Staring into Jodi's eyes, Jim speaks carefully in a gentle voice barely louder than a whisper. "In the name of God, I, Jim, take you, Jodi, to be my wife..." No one thought this would ever happen.
Jim? Married? Jodi? Married? To each other?
"I thought I would have a child living with me the rest of my life," Ann Zimmerman says of her daughter. Marian Mason concluded the same about Jim. Both Jim and Jodi were born with Down syndrome. It's what their mothers thought the physical and mental limitations of the syndrome demanded. And for generations, doctors thought so, too.
They were wrong.
In the decades since Jodi and Jim were born -- let alone in the 100-plus years since British physician John Langdon Down described the mental retardation, short stature and other characteristics of the chromosomal disorder that now bears his name -- virtually every notion about the abilities of those who possess Down syndrome has changed and is changing still.
Jim and Jodi's marriage, one of the few like it to occur in the Kansas City area, is evidence of how much.
"In the name of God," Jodi says at the altar, "I, Jodi, take you, Jim, to be my husband, to have and to hold from this day forward, for better, for worse, for richer, for poorer..."
On to self-sufficiency
Indeed, although marriages among persons with Down syndrome are still rare, advocates for the developmentally disabled say they are increasing. They applaud the trend.
Because while being born with an extra chromosome creates limitations, it doesn't keep one from falling in love.
Jim and Jodi's parents see the issue more simply.
"They deserve to be happy like you and I," Ann said.
Down Syndrome Newsletters Articles
Premature aging in persons with Down syndrome is a researched fact. In this study, the authors wanted to find out if women with Down syndrome experienced the onset of menopause earlier than women without Down syndrome, but with mental retardation.
In examining 157 women with Down syndrome and 187 with mental retardation and without Down syndrome, all age 40 or over, the authors did find evidence of earlier onset of menopause. The presence of treated thyroid disease with Down syndrome did not alter the finding. In the sample, the onset of menopause for women with Down syndrome was 47.1 years. Whereas, for the women with mental retardation and without Down syndrome it was 49.3 years. The current estimated age for onset of menopause for women without mental retardation is 51 years.
Therefore, women with Down syndrome did experience the onset of menopause approximately four years earlier than most women. I believe that further study regarding health parameters of aging and aspects of women's health is warranted in persons with Down syndrome.
Beloved of Amon by Shenouda Mamdouh - Documentation Unit, Training and Studies Department - Seti Center, Caritas - Egypt. E-Mail: firstname.lastname@example.org, URL: [removed].
With great joy, Samia returned home to announce that she was two months pregnant. She has been married for a year after a love story. Mahmoud looked at his wife feeling that their marriage would finally be crowned with a baby. Mahmoud was still not able to adapt to the idea of being a father, he used to be light and free, a pleasant person loved by everybody. He liked to travel and to live his life in full.
As time passed and friends congratulated, he really began feeling like a father. Sometimes he was scared by this coming responsibility, other times he would stare at his wife, thinking "When would the remaining pregnancy months conclude". He was desperately awaiting for the birth of the child, feeling that a piece of him was coming to life.
Many worries tormented him. It won't be easy for my child, he said to himself, with unemployment and bad financial status of the country. Mahmoud was working as an accountant in the National Insurance Company, he earned LE120 ($35) a month. He transformed his small car into a taxi and worked in the evenings to increase his revenue. Since extremists led terrorist actions against foreign visitors, his revenue dropped to half. He could barely survive with his wife. How would he afford school costs, health expenses? Two years ago all people were dreaming for their children to be physicians. Now he didn't seem to have special dreams for his child. He sometimes wished that his son or daughter would be famous and work in the valley emerging in the south where another Nile River was dug in the desert at Toshky. He guessed that plenty of chances were there to make money.
Samia on the contrary, wanted a daughter. A girl that would help her in the house work. In our world she said only women can understand each other. Although some husbands were tender, female friends remained the closest. Samia's mother never trusted men she used to say: "You that trust men are trusting water in a sieve". She wished that sometimes her daughter would act as a sister or even mother. At times of pain, she would feel and understand her. About marriage, Samia's mother used to say: "A man's shadow is better than a wall's shadow". She said also that raising girls was easier than raising boys.
Samia had 3 brothers and 7 sisters. A girl would tell small secrets to her mother: Relations to classmates, teachers and neighbors and in teenage she would tell her about young men she likes. The mother would then bear the role of leading her child through the right path and finding a suitable husband for her. That should be in the first half of her twenties. Smiling at these thoughts, she would feel the baby moving in her womb. Once again she would stare from the window at the children playing in the street. Although she dreamt of a tender daughter she wanted a brave one, like those who lived in the beginning of the century and led women freedom acts. She asked herself: "Why wouldn't my daughter become a famous writer like Naguib Mahfouz who won the Nobel Prize or Boutros Ghali who was secretary of the UN?" Samia always admired Mrs. Tatcher, former Prime Minister of UK.
The remaining months flew quickly. At 4:00 in the morning, Samia woke up with fast and strong labor and woke Mahmoud telling that she would give birth soon. He called the physician who advised them not to panic and to get soon to the hospital. In his small taxi they drove onto the hospital. Soon the physician arrived cheerful as usual, he reassured them. Samia was in real pain, "Take care of our baby", she said, she felt she might die. Mahmoud, although stressed tried to smile and comfort her before she entered the operation room. Few minutes later, the physician came out to tell that delivery would be by cesarean sectioning as natural delivery was not possible. Although knowing that some physicians do that just to get triple the fee of natural deliveries, Mahmoud consented, he wouldn't spare any help for his beloved Samia.
53 minutes later, the nurse announced that his daughter was born. Although he wanted a boy, he felt overjoyed. A bed on wheels took Samia anesthetized, to another room. At night, plenty of friends came to congratulate at the hospital. Both Mahmoud and his wife decided to call their child "Mariam" a name that was easily accepted by all people and also a distinguished one as Mariam is the Arabic name for Mary who is the mother of Jesus venerated by both Christians and Moslems and also an Ancient Egyptian name: Meri-Imn means the beloved of the god "Amon".
Mariam was a beautiful child. In the evening following her birth all members of the family gathered at the hospital to congratulate. Since her birth, Mariam was an active person. The first days were harsh (as usual), her parents were unable to sleep most of the night because of her crying. One year later, Mariam was quieter but Samia noticed that she was not able to talk as children usually do in her age. One night, she got very ill that her temperature reached 39 c, Mahmoud was very worried, he called Dr Atef who rendered a visit soon. At 7:00 p.m. he arrived asking about Samia's health and the baby. He gave medicines and told them to keep her warm and giver her hot drinks with lemon. He requested some tests and promised a further visit. A week later, Mariam had recovered, the doctor came again, Mahmoud's brother in law and his wife were visiting, they presented some chocolate, kissed Samia and left.
The door closed, the doctor sat consulting the test documents in his hands for few moments, rose up, looked to the child and firmly said: "As far as I see from the tests and analysis added to my personal observation, your daughter is mentally retarded, she shall never be normal, she shall barely walk talk and acquire some few skills in longer periods. Such children die early and have problems during their whole life. They are sensitive to any diseases and get easily ill. It is not worth to spend any money or go to physicians, there is still no treatment in the whole world, it is God's will and you should not oppose it". Stuck by the surprise, they didn't seem to understand a word, the woman looked at the doctor and simply asked: "What does that mean?". The doctor said: "In brief your daughter would never be able to learn, study or live a normal life she is retarded and medicine still didn't discover any treatment, in medical terms we call it Down syndrome". He rose quietly, said: "excuse me" and left the room. At the door, he looked at them for a moment then he decidedly left and closed the door.
Left in the silence, they were astonished, looking at nothing but the air. Samia looked at her child and broke in tears. Mahmoud took his wife in his arms trying to comfort her.
In fact, they didn't know how to react. They had never imagined having a handicapped child. As believers in God, they thought it might be a damnation from Him as the doctor said. They might have done something wrong. Samia felt all of a sudden that Mariam was a stranger, she preferred keeping her in her small bed.
The following days, were too harsh for the family, Samia couldn't express any kind of tenderness towards her child. Although trying to hide it, Mahmoud was depressed too, he used to drive the taxi till very late at night, to avoid staying at home. In a few weeks, the family spirit dropped. In his work, his colleagues knew it, they wanted to help him but couldn't, now he knew that Mariam wouldn't be able to enroll in a normal school and would have no future. Special Education schools were very expensive and he could not afford them.
The family lived then in a flat in Omraneya Suburb, a somehow rural place, in a small 2 floor building in a narrow path. Although all were poor people, many of their neighbors were friendly and helpful. Since her child's birth, many women neighbors visited Samia to help her in cooking and raising her child. Specially Om-Samir, mother of 3 children who was living next door. Om-Samir visited Samia at noon every day, they drank a cup of Turkish Coffee together. Om-Samir, although illiterate woman, was very entertaining. She always talked about the price fluctuations of vegetables and fruits, her own ways of cooking many specialties and the problems encountered in raising her children.
As time passed, they became good friends. Mariam was growing physically but very retarded in talking, walking and all skills that normal kids acquire early. Instead of leaving her child at home, Samia took Mariam to the market with her. She met women and saw men sitting in the café just at the corner of the street. She heard them whispering, sucking their lips and shaking their head: "What a pity!!". All day long some children (rather young devils) played in the street under their balcony, addressing the young Mariam standing there, they would often sing to make fun of her and laugh or they would sing a song of aubergine vegetable which is known to be symbol of madness. It is true that Samia shouted at them, but they would always return. Their parents prohibited them from playing with Mariam thinking that they could be contaminated or beat by this (stupid) girl. Samia and Mahmoud were feeling a real humiliation, they visited many physicians and kept asking: "Why... why did we get a handicapped child, why did all our dreams collapse, what wrong did we do?" and they never found the answer,
One morning, drinking her cup of coffee, Om-Samir told Samia them that while she was going to the market this morning, she met a mother accompanied by a handicapped child, she talked to her as she needed to ask about a street and soon they became good friends. To tell the truth, Samia thought Om-Samir was a real amazing woman! very sociable who can easily become friend to any person. Her way of talking impressed her partner. This lady told her about a free meeting at the school in the neighborhood, all mothers gather for consultations and training with specialist from a humanitarian center for the mental handicapped called Seti as far as she remembered.
Om-Samir finished her cup of coffee, opened her bag and said with pride: "I got the schedule and phone numbers for you". Telling that to her husband, Samia discovered that he knew about it as it was advertised some years ago at the mosque where he prays.
Not really expecting too much, in the designated evening Mahmoud and Samia got to the school where the training took place, they were received by Mrs. Hadia, a middle aged lady mother of Amany a 20 years old Down Syndrome girl. Hadia explained that she came few years ago as volunteer and now she was leading the whole project. She was trying to reach all people to talk about the importance of caring for the mental handicapped to integrate fully in the society. She had Amany with her, a beautiful fair-haired Down Syndrome girl. Amany was working at sweets' a factory and was earning a weekly salary.
Knowing that they were Moslems, Mrs. Hadia explained that God created people different, she told them that difference was part of life, some people were black, others were white, some were tall others were short and people are differently skilled and gifted. She said: "Unless you have faith in your child, unless you believe she is equal to other children, there should be no hope".
They were impressed by the children and the mothers they saw. Returning back home, they began changing their attitude towards Mariam. Samia felt that she deprived her child from maternal love, she felt very guilty and wanted to do anything to compensate her.
In the weekly meetings, specialists were teaching the mothers songs, dances, sports and ways of educating their children, they tended to analyze the behavior of children and adopt a scientific way to rehabilitate them rather than criticize the children. They had strong faith that all children have hidden capabilities, it was our own fault as parents if they grew up hiding them.
In the beginning Samia was amazed by this new world. She was impressed by the different people she met and the new friends, she was happy to share her concerns with mothers who would feel and understand her. With time, she became more realistic. Life that once appeared too bright to her, now tended to be more natural. She felt that it strengthened her. She could easily face problems now. More important she could open her ears and heart to new comers to the school. Often, while drinking coffee with Om-Samir she would tell her about the center and Om-Samir's 3 children began coming regularly as volunteers to help the mothers in training the handicapped children in the center.
A few years later, Mariam began talking, she participated in many sport races. Samia began helping other children than her own. Some children were more handicapped than Mariam, she began acquiring experience in training them which she later transferred to new comers. Those were golden years for her, she felt that it changed the meaning of her whole life. "Now there is a mission to accomplish" she said. In summer, the whole group of parents and children traveled to Fayed in a summer camp with specialists to train children depend on themselves. Samia was now very interested in acquiring a lot of information both from mothers and specialists. She was worried about her child who was almost beginning the adolescence period. How should she transfer necessary information on sexual education? She was really stuck!
Later Mahmoud too got very interested and committed, he bought many psychology books and books about different types of Mental handicap. The last day of March was a big celebration of children birthdays. After it was concluded, a one-week course on sexual education for the handicapped was announced. To subscribe she should pay 40LE ($10), The problem was that she should go to the main branch of the center which is far away from home. Although she had a great need and desire to attend the course, her child was growing and needs her more. She was no more light as she used to be in earlier days to go out of home in the morning twice a week. Alone at home, she was thinking about that when somebody knocked at the door. It was Om-Samir. She was carrying a big bag: "It is the season of Mango, lower prices and best quality" she said "I brought 5 kg for you and 5 for me" Samia asked her to sit and shared her concerns with her. "Don't be fool my dear" said Om-Samir "you just leave Mariam with us and go attend the course, I heard that many specialists and university professors are teaching there, don't miss the chance. As for Mariam she shall be as my daughter".
The same night, Samia decided to enroll. At the scheduled day, she left Mariam with Om-Samir and went to the course. She rarely went out of Omraneya Suburb and said that she was born and lived all her life there, as a fish died out of the water, she wouldn't survive out of Omraneya. She left leaving home early and was one of the first students to get to the center. It was not hard to find out the location, situated in a 4 floors building inside "College de la Salle", this big center was flourishing with more than 120 workers. Entering from the door, she saw a young man whose face showed he was handicapped, he was presenting tea and coffee to people with a gentle smile. She was amazed that she met many handicapped workers there more than she had seen in her whole life.
The first lecture they had was with a specialist called Violette, an Egyptian lady having two mental handicapped daughters. She welcomed them with humor and asked mothers about their names and the names and age of their children. Some university students were also attending the course. She began talking about different human life stages and the different sexual manifestations during these stages. She emphasized that many times parents by their false habits cause sexual problems for their kids. During the break they were served tea and biscuits. All mothers were friendly, some discuss what they were told at lectures while drinking tea, others were just laughing and enjoying the break. After the two sessions of the day, she returned home to tell with great joy what she saw.
Since Samia began attending activities she felt like another person, her ways of dealing with Mariam were better, which helped her to develop quickly. Her way in arranging the house, in cooking and in everything has changed. Her view of life was no more the same. During the following years she attended courses in Preliminary assessment of the mental handicap, Language Stimulation, Developing Basic Skills, Behavior Management, Non-Verbal Communication, leisure and play, Manufacturing Low-cost Toys, Working with families, Montessori Method of teaching reading and writing, Voluntary work and Institution Rehabilitation for severely handicapped and many other general courses.
Now Mariam is a young beautiful blond girl. She has a full schedule all week. She makes needlework and knitting and the center sells it on her behalf in its yearly Fate. She attends the social club and does also some jogging. In her free time she reads some simple illustrated books. Samia found that her daughter likes modern Egyptian music. Her favorite singer "Mustafa Amar" is really a good singer. Next year Mahmoud will retire from his work as director of the credit department at the Insurance Company. He is not worried about his child. His only worry is that left with nothing to do, he shall spend a lot of time at home after being busy all the time.
A friend of mine once visited me at my office in Seti Center, he saw many mothers and children and came to me very impressed: "You are doing a great service to needy people" he said "It is the first time of my life I see it". I realized at once that I got used to my job and forgot the mission to which I was committed one day. Therefore I decided to describe the world where we are living in a short story to keep before my eyes a symbol of the mission to which I dedicated my life.
"Beloved of Amon" is a compilation of years of experience of many workers in different departments of Seti Center Caritas Egypt. Although Samia and Mahmoud are not real people, all their story as written was lived by many families served by the center.
The story shows the real difficulties faced by the person with mental handicap in his/her life in the Egyptian society and part of the role Seti is taking in order to solve them.
Thanks are due to Essam Francis (Head of the Care and Rehabilitation Department and of the Vocational Training Division) who enriched the story with many elements, the CBR (Community Based Rehabilitation Team) namely Sarah Zakaria and Neama Mohsen who described the sexual Education lecture, Thanks also are due to Mrs. Mariam Habib at the Reception and Assessment unit who told the experience of many years of her service to parents. To Hossam Saad my boss who revised the content and made many valuable remarks which improved the story line and Nevine Samir who revised the style. I hope you enjoyed it.