My son Mattie was born with Down Syndrome. He is 4 years old and is an absolute JOY almost all the time! I’ve often thought about how blessed we are as a family to have been given the Gift of Mattie.
Mattie was born with 2 holes in his heart and baby leukemia. He’s been poked and prodded repeatedly, but through it all, he never, ever loses his smile. Sure, there are tears, but very often after he is poked and prodded he can be seen hugging the technician that just drew his blood with a big smile on both faces!
I’ve learned more from Mattie than he’ll ever be able to learn from me in his lifetime. We have our challenges as a family, but through it all Mattie just keeps on smiling.
As Thanksgiving approaches, Mattie is a big reason for why we are so thankful. He’s happy, healthy (the holes in his heart have closed & the baby leukemia is gone), handsome, and has taught me the importance being positive about everything.
I received the document below from someone last year and I wanted to share it with you, so that you may get an understanding of the life of someone with Down Syndrome. If you know someone with Down Syndrome, then you will get it immediately. If you don’t know someone with Down Syndrome, you’re in for a treat!
Happy Thanksgiving!
———————————————————————————–
Dennis McGuire, PhD, Adult Down Syndrome Center of Lutheran General Hospital – Park Ridge, Illinois
This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original.
If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.
Development of the
Adult Down Syndrome Center
Before beginning, let me provide a little history. NADS, as the oldest Down syndrome parent organization in the country, had many members who had teen and adult age children. These families found there were few health or social services available to them. Sheila Hebein, Executive Director of NADS, was determined to develop resources for these individuals and their families. She recruited the Center’s Medical Director, Dr. Brian Chicoine, and myself to help develop and then run the Center, and we continue to have a very close working relationship with NADS.
Why us? Brian had some experience in his medical practice with persons with disabilities, but he also did not have a great deal of contact with people with Down syndrome. One could say I also had led a sheltered life. Sheila’s son, Chris, was probably the first person with Down syndrome I had ever met. Still, Sheila seemed to know this would work. The good thing about our lack of experience was that we were able to listen to the families and the people with Down syndrome without any preconceived ideas, assumptions, or biases.
We learned quickly that the families are the experts with regard to their sons and daughters-because they had to be. We view the information we have gathered from families as a repository of their wisdom. We hope this paper will be helpful to families who are searching for ways to improve the lives of their sons and daughters
————————————————————————-
What would happen if people with DS ruled the world?
If people with Down syndrome ruled the world:
* Affection, hugging and caring for others would make a big comeback.
* Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.
* All people would be encouraged to develop and use their gifts for helping others.
* In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.
* People would be refreshingly honest and genuine.
* People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”
* We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.
* However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and …can they dance! (and by the way, who needs a date… “Just dance”).
* Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning. (Many people love it so much, they will chase the band down at the end of the night, begging them to continue.) Perhaps, too, part of the reason they love weddings so much is not just because of the food and dancing, but because in many cases the rules against hugging are temporarily suspended. This may give people a little piece of what I experienced in Argentina. Whoa! Can you imagine what the world would be like with so much affection unleashed?
* People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.
* People with Down syndrome have a reputation for “talking to themselves.” When conducted in a private space, self talk serves many adaptive purposes.
* It is a wonderful means to ponder ideas and to think out loud. It allows people to review events that occurred in the course of their day. It allows people to solve problems by talking themselves through tasks. It allows them to plan for future situations. It is also helpful in allowing people to express feelings and frustrations, particularly if they have difficulty expressing their feelings to others. There is even evidence that athletes who do not have Down syndrome use self talk to motivate themselves. Certainly people without Down syndrome talk to their computer (particularly when it crashes), and likewise many people talk out loud when driving in Chicago. (Of course they may also make odd gestures as well; not recommended if long life is one of your ambitions.)
* Order and Structure would rule
* We have heard that many people with Down syndrome are stubborn and compulsive. Now, I know what many of you are thinking…“Did you really have to bring that up?” I’m sorry, but—we do. What we hear is that quite a few people have nonsensical rituals and routines. They can get stuck on behaviors that can drive family members a little crazy.
* Despite the irritations, there are also many benefits to these “obsessive compulsive tendencies.” We actually have termed these tendencies “Grooves” because people tend to follow fairly set patterns, or “grooves,” in their daily activities.
* What are the benefits of Grooves? Many people with Down syndrome are very careful with their appearance and grooming, which is especially important since they often stand out because of their physical features. Grooves also increase independence because most people are able to complete home and work tasks reliably when these tasks are part of their daily routine. (And while they are not fast … they are very precise.) For many with Down syndrome, grooves serve as a way to relax. Some people repeat a favorite activity in a quiet space, such as writing, drawing, puzzles, needlepoint, etc. Grooves also serve as a clear and unambiguous statement of choice (very important for people with language limitations). This may even be a way for teens with Down syndrome to define their own independence without getting into the same rancorous conflicts with parents as many other teens.
* So given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how:
* Schedules and calendars would be followed.
* Trains & planes would run on time.
* Lunch would be at 12:00. Dinner at 6:00.
* Work time would be work time.
* Vacation would be vacation.
* At the Center, our receptionist, Shirley, will often have people at her desk pointing to the clock or their watches. Obviously, she hears about it when we don’t take people back at their appointment time, but she also found that some people refuse to go back early: “Nope I am not going at 9:45, my appointment is at 10:00,” nor does going over into the lunch period work. I am sure all of you have similar stories.
* But there is much, much more:
* People would be expected to keep their promises.
* Last minute changes would be strongly discouraged (if not considered rude and offensive).
* Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).
* Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).
* The “grunge look” would be out, way out.
* “Prep” (but not pretentious) would be very big.
* In the world of Down Syndrome, there would be a great deal more tolerance for:
1. Repeating the same phrase or question
2. Use of the terms “fun” and “cleaning” in the same sentence
3. Closing doors or cabinets that are left ajar (even in someone else’s house)
4. Arranging things until they are “Just so.”
* Despite their compulsions and grooves, people with Down syndrome rarely have the really ‘bad habits’ that so many of us have. In fact, out of approximately 3000 people we have seen at the clinic, we have not seen any drug addicts or gamblers and just two alcoholics and a very small number of smokers. However, we think that pop may be a common addiction in the world of Down syndrome, and of course some people are incurable savers and hoarders of just about everything, but especially paper products and writing utensils. Because of this, I could see maybe a Betty Ford Center for pop addicts and extreme paper hoarding.
* The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.
* At the Center, we frequently hear about pace, or how fast or slow people move. Quite often these issues are discussed in disparaging terms by harried and frustrated family members. In this world, people with Down syndrome have a reputation for having two speeds, slow and slower.
* Therefore, in the world of Down Syndrome:
* Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.
* Here and now would command a great deal more respect than it currently does.
* Stopping to smell the roses would not be just a cliché.
* Work would be revered, no matter what kind, from doing dishes to rocket science.
* We have consistently seen respect and devotion to work by people with Down syndrome. This is such a strong characteristic for many that they don’t want to stay home from work even if feeling ill. Perhaps more importantly, they value any kind of work.
* Therefore, if people with Down syndrome ran the world:
* Speed would be far less important than doing the job right.
* Work would be everyone’s right, not a privilege.
* However, we think there would probably be no work conducted during the time that “Wheel of Fortune” is on TV.
* All instruction would include pictures to aid visual learners.
* Many studies have shown that individuals with Down syndrome have deficits in auditory memory. If they cannot remember verbal instruction, they may be considered oppositional or less competent in school, home, or work environments. Despite this, they have exceptional visual memory-they are visual learners. If they see something once, they can usually repeat it. They also have an exceptional memory for facts and figures of interest (favorite celebrities, movies, music, sports teams, etc).
* If people with Down syndrome ran the world:
* School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.
* Counselors would be able to use visual mediums to help solve problems.
* What About News?
1. Weather would be the only essential news item
2. News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?
* What About Bad News?
1. If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”
* What About “Behaviors”…
1. …and terms such as (the ever popular) “Incident reports,” “Outbursts,” “Unprovoked outbursts” (one of our all time favorites), and of course “Non compliance”?
* We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Brian Chicoine and I both figure that we would have been on major psychotropic medications long ago if we had people writing up incident reports on us.
* We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people.
* Therefore if people with DS ran the world:
1. Anger would only be allowed in special sound proof rooms.
2. Trained negotiators would be available to everyone to help deal with any conflicts.
* The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”
* What About Self Expression?
1. Art and music appreciation would be BIG.
2. People would have time to work on paintings and other art projects.
3. Acting and theatrical arts would be encouraged for all.
4. Dancing
5. You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight … absolutely.”
6. The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.
* People would be encouraged to get married several times to have more weddings for more music and dancing.
* Richard Simmons and John Travolta would be national heroes.
* Music
1. Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)
2. Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)
3. John Travolta would be the biggest star.
* Television
1. Classic TV hits would be very BIG and take up at least half the TV schedules.
2. “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.
* Wrestling would be very Big.
* “Life Goes On” would also be very Big and replayed regularly.
* Movies
1. There would be fewer movies, but they would be replayed over and over.
2. Movie theaters would allow people to talk out loud to tell what happens next.
* No Secret Agents
* People would not hurt the feelings of others and they would also not lie or keep secrets.
* Therefore there probably would be no secret service agents, spies, or terrorists.
The purpose of this article is to give back some of what we have learned to the families and people with Down syndrome who have come to the Adult Down Syndrome Center and who have been so giving and open with us. If people understand more of the special talents people with Down syndrome have, they may be more able to help them use and develop these talents to improve their lives. We also wanted to reassure families of younger children with Down syndrome who are concerned about their child’s future that there is much to be optimistic about.
Sylas Michael
Joshua Ezekiel (aka Zeke)
Sunday, November 29, 2009
some recent message board posts
just a little capsule of some recent message board postings to have for the future.
i had blood drawn for quad screen, but the lab did the wrong test and never tested for down syndrome. i remember being outraged and calling the doctor to scream at her and demand another test. it was 1 day too late. i remember pacing the front lawn calling my husband at work to tell him what had happened and how much the lab sucked and all that jazz. it was the pregnancy hormones talking, because i was over it by the end of the call with him, and never thought about it again. until the moment sy was born and a specialist came over to tell me he had down syndrome before i ever got to hold him. that specialist ruined my first moments with sylas, but the rest of our lives with him could've been ruined by that silly test all those months prior. in hindsight, i'm SOOOO glad we didn't know, and i'm so glad we didn't become one of the 92% abortion statistics. back then, i don't think i would've been strong enough to have had him, but i would have missed out on the best thing that's ever happened to my world.
i am fortunate to live in an area where we receive PT, OT and a teacher weekly, plus a ST every other week. i must say, i love all of our therapists to death, but if i HAD to choose only 1 at a time, it would 100% hands down be sy's teacher. at sy's 1 year eval, he was 40% delayed in physical and feeding/occupational, which i believe is pretty normal for normal-functioning babies. however he was only 9% delayed cognitively. the norm in the ds world is that most kids don't walk until they're 2 or more, and the norm with ALL babies is that the brain develops 80% in the first 3 years of life (lifespan of EI). if the body will catch up in development and the brain "won't" (so to speak), it would be my number-one area to develop. my son took awhile to warm up to his teacher because he saw her only every other week, but he's been seeing her weekly for about 6 months and he can't wait to see her every week. she basically plays with and talks to him the whole time, but now that he's stronger, we play while kneeling, sitting, standing, etc., so he does get a little PT, and she works with his motor skills too in game play.
i had blood drawn for quad screen, but the lab did the wrong test and never tested for down syndrome. i remember being outraged and calling the doctor to scream at her and demand another test. it was 1 day too late. i remember pacing the front lawn calling my husband at work to tell him what had happened and how much the lab sucked and all that jazz. it was the pregnancy hormones talking, because i was over it by the end of the call with him, and never thought about it again. until the moment sy was born and a specialist came over to tell me he had down syndrome before i ever got to hold him. that specialist ruined my first moments with sylas, but the rest of our lives with him could've been ruined by that silly test all those months prior. in hindsight, i'm SOOOO glad we didn't know, and i'm so glad we didn't become one of the 92% abortion statistics. back then, i don't think i would've been strong enough to have had him, but i would have missed out on the best thing that's ever happened to my world.
i am fortunate to live in an area where we receive PT, OT and a teacher weekly, plus a ST every other week. i must say, i love all of our therapists to death, but if i HAD to choose only 1 at a time, it would 100% hands down be sy's teacher. at sy's 1 year eval, he was 40% delayed in physical and feeding/occupational, which i believe is pretty normal for normal-functioning babies. however he was only 9% delayed cognitively. the norm in the ds world is that most kids don't walk until they're 2 or more, and the norm with ALL babies is that the brain develops 80% in the first 3 years of life (lifespan of EI). if the body will catch up in development and the brain "won't" (so to speak), it would be my number-one area to develop. my son took awhile to warm up to his teacher because he saw her only every other week, but he's been seeing her weekly for about 6 months and he can't wait to see her every week. she basically plays with and talks to him the whole time, but now that he's stronger, we play while kneeling, sitting, standing, etc., so he does get a little PT, and she works with his motor skills too in game play.
Monday, October 12, 2009
Great Article!
A Mathematician's View
Fighting Ignorance with Knowledge and Logic
by reasonmclucus
Thursday, Sep 17 at 1:14 am
Down Syndrome Doesn't Stop Eagle Scouts
EMAIL | PRINT | COMMENT | SHARE
Lucas Wondra has achieved something only about 4 % of those who enter scouting achieve. He has achieved the rank of Eagle Scout.
His achievement is particularly significant because the 16-year-old Hutchinson (Kansas) High School student has the genetic disorder Down Syndrome. Lucas is one of many who are demonstrating that individuals with Down Syndrome can be productive members of society. Maybe they are not capable of performing brain surgery or becoming professional athletes, but then neither are the vast majority of the rest of us.
Individuals with Down Syndrome have an extra copy of chromosome 21 , a condition called trisomy 21, which can cause physical and mental disabilities because having three copies of some genes interferes with the normal operation of cells and development. Down Syndrome children may not be geniuses, but many of them are able to attend classes with other students instead of being limited to special education classes as was once the case.
The cause of the extra copy of the chromosome is unknown, but it is known that an extra copy may be received from one of the parents or the extra chromosome may appear during the embryonic stage of development resulting in some cells with the extra copy and some with only two copies of chromosome 21. The possibility of an extra chromosome developing in embryonic cells is a major reason why embryonic cells may be unsafe to use in treating human disorders Lucas isn't the first Scout with Down Syndrome to earn the rank of Eagle Scout. For example, Adam Townsend of Mesquite, Texas, became an Eagle Scout on June1, 2009. A. J. Trueblood of Lakeland, Florida, became an Eagle Scout in August, 2006. Clayton "Trey" Henderson of Ridgeview High School in Orange Park, Florida, became an Eagle Scout in April, 2006.
Down Syndrome scouts have to meet the same requirements as other Eagle Scouts if they are physically able to do so. A. J. Trueblood didn't even mention that he had Down Syndrome on his application.
Lucas is unable to swim so he substituted a 20 mile hike. He also completed five 10 mile hikes. I don't know if I even hiked 20 miles when I took basic training in the army, although it sometimes felt like 20 miles.
Lucas is physically unable to speak but can communicate using sign language and a PDA with voice software. He used the PDA to communicate with a congregation while serving as a chaplain's aide including offering a thought for the day and leading in the Lord's Prayer.
Many of those with Down Syndrome never had the opportunity for achievement that these Eagle Scouts had because their mothers listened to ignorant, prejudiced doctors and others who persuaded them to have abortions. Many share the prejudiced (or is it bigoted) view of Nicholas Provenzo that "a person afflicted with Down syndrome is only capable of being marginally productive (if at all) and requires constant care and supervision."
Provenzo obviously doesn't understand what those with Down Syndrome can do. I wonder how many of those who think Down Syndrome individuals cannot do anything had the drive to become Eagle Scouts.
Perhaps the lamest argument for aborting Down Syndrome babies has been suggested to students on more than one occasion by University of North Carolina Chapel Hill Professor Albert K. Harris. "In my opinion, the moral thing for older mothers to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does. The brain is the last organ to become functional."
"I know somebody who had a child like this, and it ruined their life," he said. Down Syndrome babies do require more time and effort than some other babies, but that doesn't mean they should not have the opportunity to be born and live.
Active "normal" children may actually require more supervision than Down Syndrome children because they may be physically able to get into dangerous situations faster than Down Syndrome children.
Potential parents who are concerned that a child with Down Syndrome might require more of their time should reconsider the decision to become parents. Down Syndrome isn't the worst thing that can happen to a child.
A child could be afflicted with a fatal form of cancer or Muscular Dystrophy. A child might be severely injured in an accident or abducted.
A child might require greater effort from parents because of hyperactivity or autism. A "normal" child may decide to get involved with drugs or gangs.
These and many other problems that can occur with children can adversely affect families, but the problem isn't with the children. Major illness of the death of a child from any cause potentially can destroy a family if parents start playing a blame game. The problem in these situations is with parents who cannot accept adversity.
Sue Thomas was born in May, 1950, and was a normal child until she suddenly lost her hearing at 18 months. The "experts" told her parents that she would never amount to anything and should be institutionalized. Her parents ignored the advice and made sure that she had the opportunity for as normal a life as possible including attending school with children who could hear.
At the age of 7 she became the youngest Ohio Champion free style skater in history. In 1979, she became part of an elite FBI surveillance team. In 2002 a tv series Sue Thomas: F.B. Eye debuted based on her career, although many of the episodes dealt with the type cases facing the FBI at the time of the series rather than cases from the 80's. The Gospel Music Channel is bringing that series back on September 14.
Some people try to define others by what they cannot do instead of what they can do. Lucas Wondra, Adam Townsend, A.J. Trueblood and Clayton Henderson have done something I couldn't have done when I was their age. They have become Eagle Scouts.
I was a Cub Scout, but my family moved to another town when I was in the 6th grade and I never became a Boy Scout. Even if I had participated, I doubt that I could have fulfilled the requirements for an Eagle Scout because I was the stereotypical "98 pound weakling" in high school.
I cannot play a musical instrument like Sarah Itoh who has Down Syndrome and who was playing the clarinet by the time she was11 years old. She is an accomplished public speaker who particularly enjoys telling audiences how she enjoys Special Olympics. At her age I had enough trouble just repeating lines in a church Christmas play.
We all have different abilities and disabilities. We can do some things that others cannot do and they can do some things that we cannot do.
Sue Thomas responded to her loss of hearing by learning to read lips. That skill got her a job as an FBI agent because she could what other FBI agents could not do. She could tell what a suspect under visual surveillance was saying without the need to plant a microphone near him.
We don't know the full potential of what individuals with Down Syndrome can do because for many years people just labeled them "retarded" and assumed they couldn't do anything. Maybe none of the Eagle Scouts mentioned will become an astronaut like Eagle Scout Neil Armstrong or a movie director like Eagle Scout Steven Spielberg. However, drama student and cheerleader Clayton Henderson might become a successful actor like Joseph "Chris" Burke who has Down Syndrome and was a star of the successful tv series "Life Goes On.."
How many of us could star in a tv series?
Some people claim that Down Syndrome children cost to society in the form of government programs that have assisted them. I doubt seriously all Down Syndrome individuals together have cost society nearly as much as Bernie Madoff.
Any my comment:
This is one of the best articles I've read in my entire life. I have a son with Down syndrome, and I did not know until birth. Most people who don't know him would say, "that's unfortunate" or "I'm sorry" or "oh how sad". But I must say, in my son's 14 months of life, he has completely changed the way I view the world, he has humbled me, he has shown me who my real friends are and has brought me so many new ones. People are drawn to him wherever we go. He is doing everything a "normal" 14 month old is doing save walking, but his legs will catch up. He is happy and opinionated and stubborn and cuddly, just like other babies. And he's all ours.
I had a quad screen done when I was pregnant, and I remember explicitly the day the OB called to tell me the lab had screwed up the test and not tested for Down syndrome. I remember calling my husband to cry and scream. I remember having a sense that something wasn't right, but I also remember the moment of calm thereafter. There was never any discussion from my doctors about Down syndrome other than that conversation and I never gave it a second thought.
When he was born, naturally I went through a period grieving, but I jumped right on the horn with Early Intervention, and he started services at 6 weeks (so the state funds it... it's not like he's couch potato who can't get a job and gets food stamps instead). Having educated myself was what got me through that first few months. Watching my son achieve is a true blessing. He's growing at a different rate and in a different way than his older brother, but it's so beautiful to just watch him go!
Had the quad screen been done correctly and had it shown a higher instance of Down syndrome in the baby, chances are he might not be here now. And that, my friends, would've been unfortunate.
Fighting Ignorance with Knowledge and Logic
by reasonmclucus
Thursday, Sep 17 at 1:14 am
Down Syndrome Doesn't Stop Eagle Scouts
EMAIL | PRINT | COMMENT | SHARE
Lucas Wondra has achieved something only about 4 % of those who enter scouting achieve. He has achieved the rank of Eagle Scout.
His achievement is particularly significant because the 16-year-old Hutchinson (Kansas) High School student has the genetic disorder Down Syndrome. Lucas is one of many who are demonstrating that individuals with Down Syndrome can be productive members of society. Maybe they are not capable of performing brain surgery or becoming professional athletes, but then neither are the vast majority of the rest of us.
Individuals with Down Syndrome have an extra copy of chromosome 21 , a condition called trisomy 21, which can cause physical and mental disabilities because having three copies of some genes interferes with the normal operation of cells and development. Down Syndrome children may not be geniuses, but many of them are able to attend classes with other students instead of being limited to special education classes as was once the case.
The cause of the extra copy of the chromosome is unknown, but it is known that an extra copy may be received from one of the parents or the extra chromosome may appear during the embryonic stage of development resulting in some cells with the extra copy and some with only two copies of chromosome 21. The possibility of an extra chromosome developing in embryonic cells is a major reason why embryonic cells may be unsafe to use in treating human disorders Lucas isn't the first Scout with Down Syndrome to earn the rank of Eagle Scout. For example, Adam Townsend of Mesquite, Texas, became an Eagle Scout on June1, 2009. A. J. Trueblood of Lakeland, Florida, became an Eagle Scout in August, 2006. Clayton "Trey" Henderson of Ridgeview High School in Orange Park, Florida, became an Eagle Scout in April, 2006.
Down Syndrome scouts have to meet the same requirements as other Eagle Scouts if they are physically able to do so. A. J. Trueblood didn't even mention that he had Down Syndrome on his application.
Lucas is unable to swim so he substituted a 20 mile hike. He also completed five 10 mile hikes. I don't know if I even hiked 20 miles when I took basic training in the army, although it sometimes felt like 20 miles.
Lucas is physically unable to speak but can communicate using sign language and a PDA with voice software. He used the PDA to communicate with a congregation while serving as a chaplain's aide including offering a thought for the day and leading in the Lord's Prayer.
Many of those with Down Syndrome never had the opportunity for achievement that these Eagle Scouts had because their mothers listened to ignorant, prejudiced doctors and others who persuaded them to have abortions. Many share the prejudiced (or is it bigoted) view of Nicholas Provenzo that "a person afflicted with Down syndrome is only capable of being marginally productive (if at all) and requires constant care and supervision."
Provenzo obviously doesn't understand what those with Down Syndrome can do. I wonder how many of those who think Down Syndrome individuals cannot do anything had the drive to become Eagle Scouts.
Perhaps the lamest argument for aborting Down Syndrome babies has been suggested to students on more than one occasion by University of North Carolina Chapel Hill Professor Albert K. Harris. "In my opinion, the moral thing for older mothers to do is to have amniocentesis, as soon during pregnancy as is safe for the fetus, test whether placental cells have a third chromosome #21, and abort the fetus if it does. The brain is the last organ to become functional."
"I know somebody who had a child like this, and it ruined their life," he said. Down Syndrome babies do require more time and effort than some other babies, but that doesn't mean they should not have the opportunity to be born and live.
Active "normal" children may actually require more supervision than Down Syndrome children because they may be physically able to get into dangerous situations faster than Down Syndrome children.
Potential parents who are concerned that a child with Down Syndrome might require more of their time should reconsider the decision to become parents. Down Syndrome isn't the worst thing that can happen to a child.
A child could be afflicted with a fatal form of cancer or Muscular Dystrophy. A child might be severely injured in an accident or abducted.
A child might require greater effort from parents because of hyperactivity or autism. A "normal" child may decide to get involved with drugs or gangs.
These and many other problems that can occur with children can adversely affect families, but the problem isn't with the children. Major illness of the death of a child from any cause potentially can destroy a family if parents start playing a blame game. The problem in these situations is with parents who cannot accept adversity.
Sue Thomas was born in May, 1950, and was a normal child until she suddenly lost her hearing at 18 months. The "experts" told her parents that she would never amount to anything and should be institutionalized. Her parents ignored the advice and made sure that she had the opportunity for as normal a life as possible including attending school with children who could hear.
At the age of 7 she became the youngest Ohio Champion free style skater in history. In 1979, she became part of an elite FBI surveillance team. In 2002 a tv series Sue Thomas: F.B. Eye debuted based on her career, although many of the episodes dealt with the type cases facing the FBI at the time of the series rather than cases from the 80's. The Gospel Music Channel is bringing that series back on September 14.
Some people try to define others by what they cannot do instead of what they can do. Lucas Wondra, Adam Townsend, A.J. Trueblood and Clayton Henderson have done something I couldn't have done when I was their age. They have become Eagle Scouts.
I was a Cub Scout, but my family moved to another town when I was in the 6th grade and I never became a Boy Scout. Even if I had participated, I doubt that I could have fulfilled the requirements for an Eagle Scout because I was the stereotypical "98 pound weakling" in high school.
I cannot play a musical instrument like Sarah Itoh who has Down Syndrome and who was playing the clarinet by the time she was11 years old. She is an accomplished public speaker who particularly enjoys telling audiences how she enjoys Special Olympics. At her age I had enough trouble just repeating lines in a church Christmas play.
We all have different abilities and disabilities. We can do some things that others cannot do and they can do some things that we cannot do.
Sue Thomas responded to her loss of hearing by learning to read lips. That skill got her a job as an FBI agent because she could what other FBI agents could not do. She could tell what a suspect under visual surveillance was saying without the need to plant a microphone near him.
We don't know the full potential of what individuals with Down Syndrome can do because for many years people just labeled them "retarded" and assumed they couldn't do anything. Maybe none of the Eagle Scouts mentioned will become an astronaut like Eagle Scout Neil Armstrong or a movie director like Eagle Scout Steven Spielberg. However, drama student and cheerleader Clayton Henderson might become a successful actor like Joseph "Chris" Burke who has Down Syndrome and was a star of the successful tv series "Life Goes On.."
How many of us could star in a tv series?
Some people claim that Down Syndrome children cost to society in the form of government programs that have assisted them. I doubt seriously all Down Syndrome individuals together have cost society nearly as much as Bernie Madoff.
Any my comment:
This is one of the best articles I've read in my entire life. I have a son with Down syndrome, and I did not know until birth. Most people who don't know him would say, "that's unfortunate" or "I'm sorry" or "oh how sad". But I must say, in my son's 14 months of life, he has completely changed the way I view the world, he has humbled me, he has shown me who my real friends are and has brought me so many new ones. People are drawn to him wherever we go. He is doing everything a "normal" 14 month old is doing save walking, but his legs will catch up. He is happy and opinionated and stubborn and cuddly, just like other babies. And he's all ours.
I had a quad screen done when I was pregnant, and I remember explicitly the day the OB called to tell me the lab had screwed up the test and not tested for Down syndrome. I remember calling my husband to cry and scream. I remember having a sense that something wasn't right, but I also remember the moment of calm thereafter. There was never any discussion from my doctors about Down syndrome other than that conversation and I never gave it a second thought.
When he was born, naturally I went through a period grieving, but I jumped right on the horn with Early Intervention, and he started services at 6 weeks (so the state funds it... it's not like he's couch potato who can't get a job and gets food stamps instead). Having educated myself was what got me through that first few months. Watching my son achieve is a true blessing. He's growing at a different rate and in a different way than his older brother, but it's so beautiful to just watch him go!
Had the quad screen been done correctly and had it shown a higher instance of Down syndrome in the baby, chances are he might not be here now. And that, my friends, would've been unfortunate.
Monday, June 29, 2009
it makes me mad
a random posting on a message board has enraged me. i can NOT believe some people are being cut out of therapies for their kids.
my response/thoughts... i have absolutely no experience with being denied therapies for sy, but GO GET 'EM, TIGER!!!!!!!!!!!!!!!!!!!!!!!!!!!! seriously, best of luck to you... you will be in my thoughts. it's just plain messed up that, due to a recession that will not last your child's lifetime, they feel they need to cut therapies which WILL LAST A CHILD'S LIFETIME and ultimately determine their strengths vs weaknesses. seriously, like my son's silly tv show says, "keep trying, don't give up". :)
my response/thoughts... i have absolutely no experience with being denied therapies for sy, but GO GET 'EM, TIGER!!!!!!!!!!!!!!!!!!!!!!!!!!!! seriously, best of luck to you... you will be in my thoughts. it's just plain messed up that, due to a recession that will not last your child's lifetime, they feel they need to cut therapies which WILL LAST A CHILD'S LIFETIME and ultimately determine their strengths vs weaknesses. seriously, like my son's silly tv show says, "keep trying, don't give up". :)
Monday, June 15, 2009
Has it been a year already?
and here i thought i'd post like all the time...
sylas' first birthday is in 3 weeks, and i haven't thought about this time last year in quite awhile. i remember sitting around crying and reading "gifts" over and over. i remember feeling paralyzed. i remember thinking why me, what did i do to deserve this? i remember wondering what would my baby ever be able to do? and i'll tell you what... it's a year later and i have NO TIME to sit around and wonder... i have a talker, a straw-drinker, a solid food eater with 2 teeth, a roller, a squeaker, a screamer, an army-crawler, a cheerio thrower, an attention-hog and the sweetest little cooer and laugher in the world... certainly not what i thought i'd have this time a year ago. our baby is just like his big brother in every way... in fact, the only way he's different is his T-21.
sylas' first birthday is in 3 weeks, and i haven't thought about this time last year in quite awhile. i remember sitting around crying and reading "gifts" over and over. i remember feeling paralyzed. i remember thinking why me, what did i do to deserve this? i remember wondering what would my baby ever be able to do? and i'll tell you what... it's a year later and i have NO TIME to sit around and wonder... i have a talker, a straw-drinker, a solid food eater with 2 teeth, a roller, a squeaker, a screamer, an army-crawler, a cheerio thrower, an attention-hog and the sweetest little cooer and laugher in the world... certainly not what i thought i'd have this time a year ago. our baby is just like his big brother in every way... in fact, the only way he's different is his T-21.
Subscribe to:
Posts (Atom)
