Dec
8
Marriage and Down Syndrome
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This is always a big controvery about mentally handicapped adults getting married. Most people at some point in their life want to share their life with someone and the disabled are no different. However, when two people are similar in their problems it causes conflict. Especially if those adults think they can raise a family the issues become great.
It depends on the degree of the Down Symdrome or Mental Retardation. There are certain levels of IQ such as trainable or educable and I do believe the latter has to be an IQ of at lease 70 the trainable I am not sure about.There is really no reason if two adults who care about each other and want to share a life should not under other supervision. If a Down Syndrome adult is going to work at Publix for instance and he or she have a campanion thats works they also why should they not share a life. If they are capable of a job no matter how menial why not a life with someone. The world is cruel enough if one is not beautiful, smart, wealthy so imagine what it is like if you are not even normal! To have someone to converse with no matter what level is a great thing to behold.
My father has a business in Martin County which is located near a Publix. He says there is a Down Syndome couple that work in the store that he always sees going to work together. They hold hands while walking slowly and he is deeply touched.In this world we all need someone in our corner no matter how small the corner may seem to others.
My mother tells me the story of my Uncle who had friend by the name of Joan who he adored. They used to go to dances together it was so touching it would bring my mother to tears. One night he wanted to borrow my mother’s evening bag for Joan and she did not want him to take. He actually became angry and told her she was a selfish witch who had everything and Joan had nothing! The point being although he was mentally handicapped as well he saw himself as her protector. Needless to say she gave him the purse.
The moral to this blog is no matter what we look like or whatever our abilities evyone wants someone to share a life with. Also to be able to belong and be accepted is what most humans long for in life. So if marriage is important it should be allowed to take place.
Dec
8
Sarah Palin
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Sarah Palin running for Vice President brought a lot of attention to Down Syndrome children. It was very touching to see her husband and children holding her little son while she was campaigning with John McCain. The love and acceptance they brought to the national spotlight was inspiring to other parents of disabled children. If she had won the nomination I have no doubt of the good works that would have come out for all handicapped children. It does however, bring out the seriousness of the situation and how do parents really make it through.
It also brings to light the reality of a working mother with a family let alone a special needs child. I know wer are told as women we can have it all but it is not quite that simple. Of course in Mrs. Palin case she is privelged in the sense of a political life where she would have more than the usual help. Also she seems to have a supportive husband and family so life would be easier. For the average mother it is not so a mentally disabled child is extremely demanding and can wear down the most patient among us. Along with the mental challenges there are physical ones as well for Down Syndrome children are plaged at times with hear and lung illnesses. Anyone reading my blogs would know about my Uncle and he was sick quite often. Eventually it was a stroke caused by a hole in his heart that prematurely killed him in his early thirties.
What does this have to do with Sarah Palin? It is not her per se but working mothers in general. Some woman with disabled children have to work they have no choice. However, does someone reaching for a very demanding position have the time and devotion for this kind of motherhood? It is not for me to judge either way and she was in office before this child was born. They also knew they were going to have a Down Syndrome child and chose to still go on so I have to admire their tenacity and wanting to do the right thing. The baby is just that an infant and there are many years to go and much love and happiness but also heartache.
My grandmother was a stay at home Mom and financially comfortable yet it was still demanding with my Uncle. My mother as the oldest used to help with a lot and became his second caregiver because she loved and protected him. It was never easy however and was ongoing.
So what is the right thing to do I do not have an answer but it will be interesting to watch if Sarah Palin continues in national politics. Also it would be good for the country to have attention brought on this subject.
Dec
6
alzheimers and down syndrome
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Alzheimer’ disease, a degenerative neurological disorder which characterists are progressive memory loss, strong personality changes and loss of motor skills has a connection to Down Syndrome. People with the latter are much more likely to develop Alzheimer’s they live later in life than the general public. However, Down Syndrome adults have a slow mentality anyway so it is hard to tell. About 25% of individuals with Down’s will have Alzheimer over the age of 35 as opposed to the general public which is about 5-10% of adults over the age of 65. It is very hard to tell the difference after a certain age in the mentally handicapped but very sad and hard to watch.
Psychologists often use questionaires answered by family menbers or caretakers to detect early dementia. Personally I am not sure what the need for all this is for the systems in the end are similar. What I find interesting is that a brillant and successful person can get Alzheimer’s at an older age with no warning when they are younger that it will be their fate.
Anyone following my blog knows about my Uncle Stephen, my mothers brother. What they do not know however is my grandmother (Stephen’s mother) had Alzheimer’s and died of it three years ago. She was at a relatively young age when it started early 60’s and had this awful disease for fifteen long years. It is a better that my uncle died at thirty-two just before my grandmother developed this illness. He would have gone crazy if she were not able to take care of him for he loved her deeply.
Doctors and researchers have found here are certain genes on Chromosome 21 may predispose individuals to carry Down Syndrome and Alzheimer’s. So we really do not know if my grandmother carried this gene which caused both awful diseases in our family or where it came from. My mother always says she is lucky to healthy and alive!!
Dec
6
group homes
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When a Down Syndrome and or mentally retarded child reaches adulthood their options in life are limited. Sometimes they stay with their parents forever but that is not always possible. They may have much older parents or ones who cannot always carry the burden and care. This is where group homes come into play and are very important in the world of the mentally disabled.
The group home concept is really quite simple in logic but not always in reality. A single family purchased by the state or private donations is turned into a home for the mentally disabled. It has a house mother or father who oversees the occupants and provides basic care and guidance. I believe they are limited to no more than six or seven people at one time. I am not sure if they have to be of the same sex or not depending on the laws. The ages run from about twenty-one and can go as old as fifty something.
The occupants usually work in some kind of sheltered workshop although in Florida Public’s market seems to be a employer of the handicapped. As a sideline I applaud the store for their efforts in giving the less foruntate a chance in life. They are either driven or at times may take a bus to work with their lunch and work regular hours. In the evening the meals are prepared with the help of the house person and eaten together as a family. So life goes on in a least a stable way for the homes residents.
Some one may be curious as to how these homes are paid for on a daily basis. It is not easy nor simple and if the parents of the adult can help out they usually do in what ever capacity they can. My Uncle Stephen lived in one for a few years in his twentys and not because my grandmother did not want him. She felt he should have some independence from her to make him stronger and she was correct for he used to cling to her. He only lived about a half hour away and twice a week she brought him home for dinner or took hime out. Sometimes he slept over on a weekend and of course he just loved that!
Nov
29
Special Olympics
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The special olympics unoffically got its start in the summer of 1962 when Eunice Shriver hosted Camp Shriver in the backyard of her home in Maryland. She is the sister of the late President John F.Kennedy and known for her charity for the disabled. She promoted the concept of involvement in physical activity and competition among people with intellectual disabilities.
Before this camp however she was instrumental in setting up the Joseph P. Kennedy Jr. Foundation to help improve the life of people with disabilities and find ways to prevent it. This foundation was set upt in the 1940’s to honor her brother who was killed in World War II.
Camp Shriver became an annual event and other new ones were formed around the United States. By 1969 the Foundation supported 32 camps around the country and the global Special Olympics was started in 1968.After this period there were more than 300 camps established and it grew beyond the Kennedy Foundation. I also want to mention that the Kennedy family had a mentally retarded daughter and sister which you never heard too much about.
The first International Special Olympics Games were opened in Chicago during July of 1968 with 1000 athletics with intellectual disabilities from 26 states and Canada. They competed in various hockey and swimming events.People with mental retardation can be great competitors and put their heart and soul in their work.
Special Olympics today attracts 2.5 million athletes from 180 countries around the world. The event is a wonderful thing and in a world of smug and over paid athletics is quite refreshing.
On a personal note my uncle Stephen which I am sure you already know, tried out for the Olympics on a local level. He was a great swimmer for my grandparents always encourage him to better himself. My mother tells me how touching it was to watch the competion and it would make her and my grandmother cry. So eveyone deserves a chance in life no matter what the issue.
Nov
22
Chris Burke
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Chris Burke is an actor with down syndrome. He wa born on August 26, 1965 in New York.His parents were told to institutionalize him when he was born but they decided against it. They chose to raise him at home and nuture his talents. They wanted him to follow his dreama and become an actor even tough it was unlikey for a child with Down Syndrome.In school, many were surprised how healthy and bright Burke actually was. Public schools wre not catering to studenst with disabilities in the early 1980’s, so Burke was sent to the Don Guanella School; in Pennsylvania where he grduated in 1985. After graduation he worked as an elevator operator and did volunteer work. Burke took acting classes at the Don Guanella school and got his first acting job in the ABC movie “Desperate”.Next came is most famous role in Life Goes On. His character “Corky” was the main role. The TV show was about the Thacher Family, whose son “Corky” had Down Syndrome. Much of the show examined the challenges of a family whose child had Down Syndrome. The Thacher Family wanted Corky to interact with “normal society” after years in special ed classes and chose to enroll him in public high school. In the series , Corky eventually got a job as an usher in a movie theater, found a girlfriend with Down Syndrome and got married.
Nov
22
WHAT IS DOWN SYNDROME ?
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Everyone has probaly seen a Down Syndrome child or adult. They have certain features such as slanting eyes, a flatter face and usally a sweet expression. However they are first and foremost human beings just like the rest of us.Their limited intellectual ability is due to an extra choromosome 21. There are approximatley 3000-5000 children born each year with this disorder. It effects about 1 in 1,000 births and about 250,000 are affected.
Children born with Down Syndrome are usally smaller with possible physical illness such as heart disease. Their mental developments are much slower as well. The majority of children with this condition function in the mild to moderate range of mental retardation. However, some children are not retarded at all and function in the borderline to low average range and others may be severely retarded. It is very important too have a caring and loving home evironment to have a positve effect on the child’s life.
Many theories have been passed around as to what casues Down Syndrome. Some believe that hormonal abrormalities, viral infections or gentic predispostion may be the cause for improper cell division resulting in this disorder. It is a known fact the risk of having a child born with Down Syndrome increases with older age of the mother. It is an interesting fact that more than 85% of babies with this illness are born to mothers under 35 years of age. Some reports say that older fathers are also responsible for the handicapped births.
At one time children with Down Syndrome did not live to their teenage years. One of the reasons being various infections taht would not topple a normal person had devasting effects on these children. A lot of children also had serious heart defects which could not be taken care of easily. Today different medications and improved health care can control these problems. So many a person with Down Sybdrome can live to 50 years old or longer.
There however, is no cure for this affliction or a way to prevent it and a person born this way will have it all their life.
Sep
29
communication/dancing
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I just read a blog about Andy, a boy with Down Syndrome who loves to dance. Dancing is a form of communication for Andy. I wish i had a spirit as free as his. Andys mother was told that most children with Down syndrome LOVE to dance. She was correct. Andy started dancing before he could even walk. Andy is actually a great dancer, he dances at proms,weddings,where ever. Most of us should learn from Andy, think of all the stress we could possibly release on a daily basis if we just cranked up the music and let loose once in a while. Andy and others with Down Syndrome may have trouble communicating(speach,hearing,expression) but are able to express themselves throught dancing or music. i suppose music may let us know if one is feeling happy or sad, content or frustrated. Now that I think about it, Stephan had a great love for music, I dont recall him dancing often, but he did spend hours in front of his record player singing and rocking back and forth to some of his favorite music. what a set of lungs he had !! The blog about Andy actually brought tears to my eyes, for both Stephan and for Andy. It was very touching and the pictures that Andys mother posted are beautiful. Maybe singing out loud was Stephans way of communication, although he certainly didnt seem to have to much trouble expressing himself by speaking either. He was very outspoken and opionated, maybe to much sometimes !!
Sep
21
Down Syndrome
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My Uncle Stephen was a special person despite his handicaps. Under the care of a loving family he became strong and in his own way smart. He learned to speak Spanish and could beat almost anyone in his bowling league even though he was not strong of statue. He was also a champion swimmer and loved family vacations at the shore.
I felt growning up that I was older than him and with my Mom learned to protect him from a sometimes cruel world. Believe me it was not always easy or fun and I felt sorry for my grandmother with ongoing responsiblility towards Stephen.
I probaly did not mention that I had another uncle my Mom’s brother Bob who was 3 years younger than her. I quess as a middle child with a brother with special needs and a strong willed older sister he did not have a chance. However he adored Stephen and was very saddened by his death as we all had been. In honor of him I have the Special Olympic lisense plate on my car and have for years. It makes me feel as if I am doing something good to help people with handicaps. When I go to Publix they at times have Down Syndrome people working as baggers and the store where we live has Michael who occaisonally helps with carry out. He trys to be friendly and talkative and breaks my heart for his effort but at least he is given a chance to be part of life.
Sep
16
Down Syndrome
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People with down syndrome hold a special place in my heart.My mothers younger brother Stephan was born with downs syndrome. Stephan was a very important part of my life, unfortunately he passed away when I was in eigth grade. He had the ability to touch me and others around him in a unique and sweet way. My mother always said he made her a better and more compassinate person than she might have been without him in her life.
Stephen was 17 years old when I was born and according to my parents waited not to patiently until I was born and would sit for hours watching me sleep and wanting to hold me. It worried my mother and father sometimes for even though he was gentle in his enthusiam he would almost crush me close to him.
During that period my grandfather was quite ill and passed away when I was just 14 months old and devasted Stephen and in a very touching and emotinal way. However my grandmother remarried a couple of years later and he had such a impact on people, my step grandfather started to do volunteer work at the sheltered workshop where Stephen went after school was over for him and Gil worked there 1 day a week.
As I started to grow up and realized he was different it did not change my feelings toward him. I was always taught to be loving, kind and to accept others who have various handicaps placed upon them in life through no fault of their own .So in many ways he made me a better person also.
Another thing that occured to me as I grew up my mothers stepfather Gil had a son the same age as Stephen. While they were the exact same age Kevin was a junior at Darthmouth and later went on to Harvard med. There was never any difference in the way the two boys were treated in regard to respect and love. My mother still says she had the greatest admiration for Gil for that reason.
I do not want anyone to think it was all great for there were many times Stephen would act up in public and I wanted to crawl into a hole. He was always with us as a family and was mainstreamed in the world.