A Brother's Story
In 1866, the medical superintendent of the Earlswood Asylum for Idiots in London, Dr. John Langdon Haydon Down, published a paper describing some of the characteristics of Down Syndrome, which today bears his name. He reported Observations on the ethnic classification of idiots, that established the eponym, and misguided the following generations of scientists and physicians. His diagnosis of idiocy became a self-fulfilling propesy, for most patients languished in institutions lacking adequate educational and medical programs. Now more than one hundred years later, we refer this condition as Down Syndrome, and have higher expectations both medically and educationally for these children.
Down syndrome is a chromosomal disorder affecting about 1-1000 live births and usually causing delays in physical and intellectual development. These delays are due to the presence of additional genetic material in the cells. Instead of having 46 chromosomes in each of their cells, a person with Down syndrome has 47 chromosomes. The extra chromosome is a number 21 which may come from either the egg or the sperm. It is thought that during cell division of a sperm or an egg, the number 21 chromosomes do not separate properly. Thus, one cell will have an extra number 21. Therefore it is also called Trisomy21. Approximately 95% of cases of Down Syndrome cases are Trisomy 21.The other 5% cases are called Translocation and 3% of the cases are called Mosaicism. With increased maternal age, the incidence of occurrence of Down Syndrome birth increases but 80% of these children are born to women under the age of 35. Down Syndrome is not related to race, nationality, religion or socio-economic status.
Down Syndrome individuals have characteristic (phenotype) features so usually one can recognize the Syndrome by looking at the person. They have slanted eyes, short (pug) nose, small ears, open mouth, and short neck. They are usually short with a protuberant abdomen and an awkward gait. The degree of mental retardation varies from normal to mild to moderate to severely retarded. It makes me mad that just this little chromosome causes such a big problem.
There are a lot of myths about Down Syndrome. The literature of Down syndrome has exaggerated the homogeneity of this population, despite the evidence for increased variation of many characteristics. The belief is in limited variability, and that people with Down syndrome reach a cut off point in adolescence, beyond which further development is not possible. This myth of Down Syndrome uniformity has persisted for a variety of reasons because until quite recently, there has been relatively little systematic research done. Of the many stereotyped characteristics, mental deficiency has been given so much emphasis. This is wrong. That is just like saying that someone is dumb because of their race, and then trying to make it a fact. Over the years, advanced medical science, improved educational systems, considerably greater social acceptance of people with disabilities in the community, and continuous efforts of the NDSC (National Down Syndrome Congress ) and the NDSS ( National Down Syndrome Society) working toward the goal of normalization of this population, has almost deinstitutionalized patients with Down Syndrome in the USA. In fact, there is a waiting list for the adoption of these children in the USA. Today Down syndrome children are in inclusion educational systems with typical peers from elementary through high school.
There is so much more to these children than their disabilities. They can teach us things that we never knew. They might not be as bright as some of us, but they can be more caring and loving than us. I know this for a fact because my brother has Down Syndrome. He might not be a genius, but he is not dumb. I have always noticed how he always thinks of everyone else before himself. He cares about everyone and tries hard to be like his older brother. He isn't just a bump on a log either. He is probably more involved in activities than most students are at our school. He is a freshman in the same school where I am a senior. He plays four instruments: violin, piano, clarinet, and bass clarinet since 4th grade and is good at them. He is in high school orchestra, band, and choir. He is at red belt-black tip level at Tae Kwon Do, (Martial arts) and has won medals in state championship tournaments. He does alpine skying, swimming, and runs track with normal children. He uses the computer very well for his homework and writes E-mail to his friends, teachers and families who live abroad. He lives life just as a normal child would. It is just harder for him to deal with math concepts, money, and time. That is because of that one little extra chromosome which affects the part of most of the Down Syndrome individuals brain that deals with intellect, speech and memory . To me it does not seem fair at all !
I wanted to let you know Mrs. Cranston that I wrote this paper from scratch. I decided to write about this subject because I was with my brother the other day and I realized that next year I will be going away to college and I won't be there for him. I started to feel bad, but then I thought that I shouldn't really feel bad because that is what most people do. He can take care of himself. People don't understand Down Syndrome, so I felt I should somehow start to tell others. I love my brother and I am very proud of him for what he is.
Individuals with Down syndrome as well as with other disabilities are first individuals. They have feelings, desires and dreams just like normal individuals. Their parents and families have to work very hard to advocate for them. They deserve the same rights as a normal person to live in a community. It takes extra time, kindness, and consideration to understand their disability. If the teachers, medical professionals, and the community they live in, follow this simple rule, the lives of Downs Syndrome individuals can be much richer and the lives of all the normal people will be richer for taking the time to know someone like my brother.