Wednesday, December 31, 2008
Hygiene: You would think that since public schools spend tons of money on health and fitness classes that its graduates would at least have basic hygiene skills, unfortunately that is not the case. Don't get me wrong there are times when I run to the store and I am certainly not looking my best and could use a good shower myself. I mean, who doesn't have to rush to the store in the middle of scrubbing the toilets and floors? I know I certainly do. However there are some people that you can tell really need to learn some basic hygiene habits. Pride in appearance is something lacking these days. Not pride in expensive clothes, but in cleanliness and neatness.
Manners: My daughter has been saying things like "please" and "thank you" before she could even speak! (she used sign language before she could talk) They are part of her daily vocabulary and while she is not perfect, she knows when to use her manners. When she gets a sticker or cookie at the store she always tells them "thank you." Yet I watch other kids rush over, grab their loot with the only words out of their mouths being "I want a cookie!" You seldom seem to hear an excuse me or I am sorry at the store either. Walking down those ever crowding isles often leaves little room for one cart let alone three or four. It never ceases to amaze me how many people shove their way past without uttering the simple phrase "excuse me" or "sorry" when they have actually bumped your cart or gotten in your way.
Respect: People seem to have little respect for anyone else that may be around them. They will use foul language with no regard for who might hear. No one seems to feel it is inappropriate to speak like that around children let alone other adults. No, I don't get easily offended or put off, but there was a time when people understood that you were to show some sort of respect for other people and watch your mouth in public. The grocery store is not an appropriate place to tell sexual jokes or cuss out your kid (not that there is ever an appropriate time for that)! Kids these days do not seem to think about anyone else other than themselves. They run out and buy the most offensive clothes they can find to purposely show that they don't care. Don't even let me get started about how they won't pull up their pants or button up their blouses!
Hygiene, manners and respect are important social skills but it is obvious that there is no guarantee that going to school is going to teach a person that skill. In fact the problem seems to be that parents believe it is the school's job to teach their children these skills when in fact these are things children learn by example. Proper social skills must not only be taught in the home by the parents, but they need to be used in the home by the parents or you are losing a fighting battle. If you don't use proper hygiene, it is not very likely that a health class in school is going to teach your child to have good hygiene. They have already learned bad habits at home and one class is usually not enough to break them. If you use foul language all the time and show no respect to others around you, your child is going to do the same, even at school. Parents need to step up and start teaching their child proper social habits, because it is obvious that schools alone can not get the job done.
While schools have good intentions and try to teach some of these things, the fact of the matter is that schools often fail to do it. Yet most homeschool children seem to have great manners, are very polite and are very well groomed. For some reason this makes people think that there is something "wrong" with them because of it! This is actually the way the children are supposed to behave!
Think about it for just a moment. What about the school environment represents anything you do in adult life? At what point do you spend your day surrounded by 20 people your exact age from your own neighborhood? At what point are you forced to eat lunch with or shower with your employees on a daily basis? How is spending five days a week there necessary to learn how to function in the work place?
No, schools are not necessary for learning proper social skills. The only thing needed to learn proper social skills is to live in a society and interact with it. It doesn't have to be at school, it can be anywhere. It seems to me that a trip to the store is the best place to start teaching those skills to your children. That is what I have done with my daughter. Each trip to the store is a lesson in behavior because I do not let her get away with being rude or disrespectful while we are there. So the next time you worry about children lacking proper social skills remember to leave where they go to school out of the equation. I guarantee you those kids that annoy you the most in public places probably go to school anyway which blows your theory about homeschooling and socialization out the water. Instead make it your goal to teach your own child proper social skills, because believe me, if you don't do it, no one else will.
Monday, December 22, 2008
Rom 14:5, 14 One man considers one day more sacred than another; another man considers every day alike. Each one should be fully convinced in his own mind...Therefore let us stop passing judgment on one another. NIV
So whether a Christian celebrates it is a religious holiday or chooses not to, we should not judge them for it. These are what Romans 14:1 refers to as "disputable" matters and allows us freedom in choosing what we do.
On a personal level we celebrate Christmas with some of the secular traditions of exchanging presents and putting up a tree. We do share the nativity story with my daughter at this time of year. What we do not do is say this is Jesus' birthday, because there is no evidence to support that it is. We do not get on the "keep Christ in Christmas" campaigns because we are not convinced that Christ was ever in it. We do not do Santa Claus because we do not care to lie to our child. But mostly we do not judge how others celebrate or refrain from celebrating this holiday. We pray that they give us the same respect in return.
With that said here are a few of the "Christmas" things we did for homeschool.
Because of how I feel about Christmas I never know what parts of it to focus on or not so I did not do many crafts, but in Sunday School we did do a simple nativity scene craft from First School Preschool activites and crafts. She made a glitter Christmas tree and Christmas Card at the library story time as well.
What we did do was bake some cookies. Since presents are being given at Christmas I want my daughter to think of giving as much as receiving. Since I am not talented when it comes to "making" gifts I figured we would bake cookies to give away. Now I realize that I am not talented at baking either! I admire all those homeschool mothers who have oodles of homemade goodies on their blogs. I was lucky to pull off some sugar cookies myself. It took two tries to get this to work and it was an exhausting process but in the end we made some cookies to give to family and friends for Christmas. Since I may not ever attempt this again, here is proof that we did it once!
We checked out several books from the library. I found these two particularly good because of our views on the holiday. It shows why these items are part of a Christian celebration of the birth of Christ. It allows the child to understand that these traditions are not part of the Bible but that they, like any other resource we have, can be used to help explain it.
The Star of Christmas is a Veggie Tale Movie that is really good. My daughter loves it. Our AWANA kids watched it this year too.
The other video my daughter really loved was the Beginner's Bible Series "The Story of The Nativity." She loves all the movies in this series.
My daughter has been counting the days until Christmas on her calendar every day. She had a party with our Down Syndrome support group which she really enjoyed and she is looking forward to opening her presents. She also knows that this time of year we celebrate when Jesus was born. She does not say it is Jesus' birthday, but she knows that this is the time of year when people choose to celebrate that wonderful event.
That is how we choose to teach some of the materials for this season. We had our final school day on Friday and will not be back to school until January. So until then, we pray (no matter how you celebrate the day) that all of you may you have a Merry Christmas and a Happy New Year.
Friday, December 12, 2008
This is one of the greatest challenges of teaching a child with special needs. Most children seem to grasp certain abstract concepts pretty easily, but we have to find ways to teach them to our children. Some of it just does not come naturally and more often then not, when a child does not pick up the concept it is assumed that it is beyond their reach. I, however, do not always believe that to be the case. I am sure Gess can grasp the concept of what this all means, but it is going to take time, patience and dedication to get it done. I am off to find those hands on activities to help teach my daughter that she needs her eyes to know what color something is, or to read the words on the paper and wonderful things like that. So, what would be a week long lesson in the senses for some children is probably going last a month or more for us. That is alright, we will have lots of fun doing it.
I will be spending a couple of weeks researching ideas and planning some lessons and then probably after the first of the year we will start really delving into each of the senses. It may take some time, but we will accomplish our goal. I will keep you posted as to what activities I find that seem to work. In the meantime please feel free to share any activities that you have used or just ideas that come to mind. That is why I am here, so we can share and learn from each other!
Thursday, December 4, 2008
We have cards 0-9 in three different colors. Green for the units, blue for the tens and red for the hundreds (which is the same color as the corresponding blocks). She draws one of each card and places it below the appropriate house. Then, starting with the units she places that many blocks in the house. (They call the ones units for the sake of accuracy and to avoid confusion. It is explained that one is a counting number which tells us how many, and units is the place value to tell us what kind)
When we have all the units in place we go on to the tens.
Then of course next is the hundreds.
Now we have all the houses in place on Decimal Street.
Math U See wants you to do three things: build it, say it and write it. This allows the child to use their eyes, ears and hands to learn. If your child does not write well yet you can either write it for them, have them use stickers or as I do, let them attempt to write it even if it does not come out well. When we use the workbook, I let Gess attempt to write the numbers copying what I write on the board. For this, I usually do the writing.
After we have built the number we work on saying it. I ask Gess how many units there are, and have her tell me and we do the same for the the tens and then the hundreds. As she tells me I write the number down on the chalk board. Then I ask her what the number is called. (She has learned that while we build the number starting with the units, when we say it we start with the hundreds.) At this point her response is generally "two hundred, four tens, four." While she says it incorrectly I actually love this answer because it shows that she not only knows what the number is, but why it is called that! I find that completely amazing!
In the videos and the materials they do explain that the "ty" at the end of tens numbers (such as sixty, seventy, etc) actually means "tens." So, to help Gess learn it correctly I write the appropriate response under the number and help her as she says it. She is starting to get better at it and sometimes will now say "two hundred forty two" like she is supposed to. Below is how I present the number to her. Remember I wrote each number as she told me how many of each place value there was. When I asked her how many units and she said four, then I wrote the four in that place, etc.
Another thing I do to practice is give her random numbers and ask her how many tens are in it, or how many hundreds, units, etc. It just thrills me that she always knows! She has also counted the amount of units that are on the tens and hundreds blocks so she understands why they are called that.
Math U See also comes with a video that is for the teacher to view to see how to present each lesson, but they say that you can view it with the students as well if you want. Gess loves watching the videos and on more difficult lessons like this it is good for her to watch them more than once. She always asks me to watch the video, so I know she likes them. We are going to be reviewing the lessons on tens to help reinforce the way to properly say the word. As it stands now though, she seems to grasp the place value of units, tens and hundreds. There is nothing like putting your hands on a lesson to implant it in the mind!
Wednesday, November 26, 2008
We checked out two books from the library, the same two as last year as I thought they were both very good. The first book, "The First Thanksgiving" by Jean C. George which was about just that, the first Thanksgiving. It was very detailed and beautifully illustrated. It is long so it took us a few days to finish it.
The second book was shorter and Gess was able to help us read it. It was called "Thanksgiving Day" by Gail Gibbons and is also about the first Thanksgiving but then it shares how people actually celebrate the holiday today. I liked that because it helped my daughter to identify the story of Thanksgiving with the events and activities that she partakes in on that day.
Since Gess is a very visual and hands on learner, sometimes just reading and looking at pictures are not enough for her to grasp the concept, so we watched some Thanksgiving videos as well. The History Channel has some videos and other information about Thanksgiving, but I didn't see the video that we had especially liked in the past. However, it has a good one that explains how we came to celebrating this holiday every year on the last Thursday of the month. You can find their resources here: The History of Thanksgiving
The other video we watched was from BrainPOP. It is an awesome educational site, but it does cost money. However, they usually feature many of their items for free and each holiday you can usually see their video related to it without having to pay. We watched the one on Columbus Day last month and this month we watched the video about Thanksgiving. When the video is over you can take a quiz which can be graded or is just for fun. Gess and I watched the video and took the quiz together to see how much of it she retained.
We have a few sites that we use for crafts. This year we used Enchanted Learning. It is another site that is only partially free but so far I haven't found anything that I needed that had to be purchased. The fee, though, is only like $20 for the whole year, so the price is very reasonable. It may be something I use when Gess gets older and has more worksheets. Anyway, they have great craft ideas and this year we made a "Thankful Turkey." To download the template does cost, but I just figured that part out. We focused on Psalm 118:1 "Give thanks unto the Lord for He is good" and placed that verse on the turkey. In each feather Gess listed something she was thankful for. Her first one was "games." Well, she is a kid! The other feathers were prayer, God, mom and dad. Here is our finished project.
There are several other good sites with craft ideas. Someone recently shared a great blog about crafts with me called Art Projects for Kids. Its the blog of an elementary school art teacher who shares her activities. It is also a great resource!
Well, that is how we studied this holiday. Let us not forget that this day is a time to give thanks. There is so much to be thankful for and as I close I will share just a few of the things that I am especially grateful for this year.
I am thankful for:
My salvation. Even though I am a sinner Christ still chose to die for me and give me eternal life. Nothing is more precious to me.
Our freedom. What a joy to live in a nation where I am free to live and believe as I choose. Freedom is something we take too much for granted. I pray that people realize that freedom is more valuable than any commodity the government can provide for us.
My husband. I am thankful for a man who loves me and is always there for us each and every day. My life would be much emptier without his love and support.
My boys. My boys who are grown are taking on more responsibility each day and it blesses my heart to be a part of their lives. I am especially grateful that they still love talking to and spending time with mom!
My daughter. Her very existence is a blessing to me, but having her healthy and so eager and able to learn continues to amaze me. I am thankful that she is doing so well.
My mother. Having lost my father last holiday season I am grateful that my mother now lives close and is able to share those days with us.
My siblings. We have not always been close but over the last few years we have been reconnecting. I pray that we will continue to do so.
My new house. I am thankful to live in a larger house. I feel so blessed to have been able to move into it and truly love it!
Our riches. According the world, I would not be considered rich by any means but in reality every American actually is. Yesterday we were at McDonald's, a food we often get tired of. I thought, how blessed we are that we have so much to eat that we have the luxury of being tired of food!! How blessed that we have cable TV, two cars and two computers. So many people consider these things as necessities, but they certainly are not! I am grateful that we are able to have so much when others around the world have so little.
Friday, November 14, 2008
Wise Words for Moms
So, back to the whining issue. Ginger has a kit called "No More Whining" and in it are two books and a "no whining" watch. The "No More Whining" book is the parent guide for the kit explaining how to handle the situation and use the other tools involved. The second book is called "Whining Will" and is about a little boy who comes whining to his mother because he is thirsty. In the story the mother tells him she is not going to give him anything when he is whining. She explains that the Bible says we should use self-control, not whine. So she gives him the "no whining" watch and he goes away and waits for the watch to beep three minutes later. When it does he comes back to his mother and asks her for a drink using his manners and self-control. Its that easy!
In the kit you also get a watch. After reading this story "Whining Will" to your child you implement the same technique when your child displays their undesired behavior. It really does work and rather quickly I might add. I remember in the seminar Ginger Plowman said it usually only takes about a week for the behavior to change and that was pretty much our experience as well. Of course it only takes a week for the behavior to initially change but there are times when it will start to creep back in again. At that point you just use the watch again. We have actually not had to use the watch in quite some time, not even with the move! A gentle reminder seems to do the the trick anymore, but its nice to know its there if we need it.
Gess never had a problem taking the watch, but she hated to put it on. She hates anything on her wrist or in her hair for very long. So for kids with sensory issues like that you can still implement the procedure, just take them to their room and put the watch on their dresser while they wait on their bed for it to beep. Gess would always bring me the watch when it was beeping. If they play with it too much they can stop the timer, but having to keep starting over again is usually enough incentive to learn to leave it alone. For a special needs child I think it is a great tool to help them visually see what is going on in any "time out" situation. In fact, they are not really in time out, rather they are waiting to try again, but they now have a tool that gives them assurance that they will get that second chance. It also offers the consistency needed to make any discipline program successful.
When the watch beeps the children are gently cued that their time is up and they may now ask for the drink (or whatever they were wanting) again using their manners. Of course, there were times when her watch beeped and I had to remind my daughter what it was she wanted to begin with! She would forget that she had just "demanded" a drink or something. Regardless, she still managed to learn to use her manners and self-control in those situations. No, she doesn't always do so 100% of the time, but she now understands that manners and self-control are the desired behavior in those circumstances and most importantly she understands why. Using our manners and self-control are the way in which we demonstrate to others that we love them!
Sunday, November 9, 2008
I also had issues with my computer. First it just quit working, so we took apart our media center computer and installed my drives and video card in it. My video card was not pleased and demonstrated by torching itself. (I am serious, it literally caught on fire. There WERE flames involved!) So, we put the media center card back in and tried that. However, my software demanded too much from that tiny case and it kept overheating and shutting down. Finally my husband intalled all of that back into my old case and I am up and running again. I have had access on other machines, but it just isn't the same as working on my own machine. Now we just need to finish building my husband's new machine so we can have a media center again. One thing at a time!
Gess has also had her 7th birthday! We had a small celebration with just her grandparents and a close friend attending (her brothers were working). She still had a lot of fun. The biggest surprise was the swing-set. We needed a larger yard for her to have one and now we finally do. She loves it already. I do realize it is getting cold, but we are not opposed to zipping up some coats and getting out doors regardless!
We have been managing to get in school through all of this. I really love her classroom area and having all of her school stuff handy right there. It makes life so much easier. She has adjusted to the move well, but she did have some things to get used to. She will still ask to "go to another house now" (meaning "the other" house of course) but is asking less than at first. Our first night here she stood by the door and said "we go home now". It was so sad and cute at the same time. I think she does like her room and the house though and I know she loves the yard a whole lot more. I am very happy and thankful for it all. It has been a blessing but has kept me busy. I hope next week to start sharing some more resources with you all again.
Monday, October 20, 2008
Reading: Most of it had been review because she already knew her letter sounds, but since we were starting with a new approach I didn't want to start in the middle. I also wanted to emphasis the sounds making sure Gess said them correctly. This last week though we began working on word blends which was something new. We started with Sa, Se, Si, So, Su. For the first time Gess was listening for more than just the first letter of the word, she had to listen for the first blend. We spent the whole week on just these beginning blends and by the end of the week she was doing pretty good recognizing the proper blend. Now we will begin adding letters to the end of the blend. She is getting good with her worksheets and can do some of them on her own now.
Remember, even though she is just now learning phonics, she has been reading by sight for a few years now. Her sight vocabulary is awesome and her ability to sound out new words on her own is amazing. Now granted its not all that consistent and she still gets many wrong but that is sometimes because the words have letter sounds she has not yet been taught such as long vowels, ph, sh, th, etc. Well, we began the Book-It Reading Program this month which is sponsored by Pizza Hut. The kids must read so many books or pages each month and if they do it they earn a free personal pan pizza. Gesserine's goal is that she must read 12 books a month. Before you panic like my mother did, realize these are early level one reader books. However, this last week she read Mr. Brown Can Moo, Can You! This was the longest book she has ever read on her own. It was awesome! Not only could she read it but making the sounds in it are so helpful for speech! So far she has read 8 books and I am sure she will be earning her pizza soon!
Math: So far it has still been pretty much all review too. She has had to build, say and write numbers 0-9. She is sometimes given the number to build, other times she has the item built and has to give the number. She has also had to recognize and count, rectangles, triangles, and circles. Her counting at that level is great. I was also going to work on dice spotting so she could recognize numbers 1-6 without having to count them. There was no need. She can already do that! Whether its on dice, a worksheet or an object, she can easily recognize small numbers. We have a couple more weeks of review type skills and then we will be introducing new material! We will be learning place values! I am so excited. She really loves doing her Math and always says "Math U See" when its times. She also likes watching the DVD with me that introduces each new section. We have also introduced some addition to her even though its not yet in her workbook since she plays computer games that require it. We make our own math problems with objects and I will be sharing that activity in the future.
Writing: I ordered and received her new Handwriting Without Tears curriculum. We have only had the chance to do it for one week, but it went really well I think. We are working on letters that begin in the top left corner. We started with F and this week we do E. She is also getting better at writing her name. If only she could master that pesky "s." Her G and E though are awesome! I am encouraged that she will have all her capitals mastered soon and maybe even begin learning how to make those smaller ones. Not only does HWT have a hands on approach that is very helpful they also have workbooks geared towards helping with consistency. They also have many other teaching ideas and strategies that help special needs learners. Notice how in her workbook she was able to trace every other letter. They say, "In books where children copy a whole line of letters, the letters get progressively worse because they're copying from their own copies. Children get better results if they practice with a model for each copy. The workbook has a model letter in every other gray block, and children write just one letter beside the model. The result is better letters." That sure explained our problem with Gess. Her first letter would be great, but by the end it was hardly recognizable! Here is a picture of her workbook page.
Notice that the top shows them how to make the letter with blocks and then on a chalkboard slate. She has those and does that before using the workbook. The slate and mat even have smiley faces in the corner to help them know where to begin the corner starting letters. Then they have them make the letters in gray blocks. This is shaded to resemble the slate they are familiar with using. It all transitions them to writing on paper. This is a great tool for them to learn proper letter size and works better for Gess than typical preschool writing tablets. Last year they had much larger areas to make their letters, but Gess, as you can see, is finally able to make her letters stay in the smaller blocks. Her motor skills are improving, and we will be getting lots of good practice with this material.
Science: We have reviewed basic colors and shapes but have also learned about finding them and using them in our world. She is now learning the concept of things like big and little, rough and smooth, soft and hard, narrow and wide, etc. She has taken two Science quizzes so far and got a 94 on each of them! Of course her exams were oral which is how we do her lessons as well.
Social Studies: She has also had one quiz in Social Studies for which she also scored a 94! It too was an oral exam. So far she has learned ways in which we communicate with others, how God has made her special and cares for her, about our family and what they do. Now we are learning about manners and being polite and kind. Next we are going to learn about communicating with sound.
She finally started AWANA and finished her beginning Gate book! While she did really well playing the games, doing the memorizing and staying with her class, after about 45 minutes she was done. That seems to be about the key timing for her in any group activity. So anyway, I tried keeping her there with me in the office at that point, but that didn't go well so from now on I just leave and take her back home to daddy. I hope by the end of the year that she might be making it to the end though.
Her ballet class is still going really well and we will be able to sit in next month and watch them! I can't wait for that! We have done some art, though that is one of my weaker areas, however I found a great blog to help with some ideas for it: Art Projects for Kids. She is improving her cutting and gluing skills as well and we are still doing speech activities on a regular basis. That sums up this month's school update.
Monday, October 13, 2008
April 28, 2002 Surgeon with a heart Pediatric specialist make an art form of a science
Author: TIM JANICKE; The Star Edition: METROPOLITAN
Section: STAR MAGAZINE
Article Text:Two-month-old Gesserine Sevedge lies spread-eagle across the operating table - a wee bulge covered with a blue surgical drape and surrounded by towering adults in sterile garb: nurses, technicians and an anesthesiologist.And a surgeon with a pneumatic jigsaw. With several quick buzzes, Gary K. Lofland unzips her chest through a window in the blue fabric and inserts a stainless-steel frame to pry apart her sternum. Inside pulses a heart the size of an infant's fist. Within minutes 13 plastic tubes radiate from Gesserine's chest cavity. Each tube, connected to a vein or artery or to the heart itself, begins carrying blood pumped from a heart-lung device, called a perfusion machine. A line on the computer monitor dips, then goes flat. Her heart has stopped. Time for Gary Lofland to go to work.An elite group Lofland, 51, is the chief of thoracic and cardiovascular surgery at Children's Mercy Hospital. Since his arrival in 1997, the number of heart surgeries here has more than doubled, to about 500 per year. Mortality rates have dropped to between 1 percent and 2 percent - the national rate is about 3.5 percent. Lofland specializes in pediatric cardiac surgery. The maladies he fixes are almost all birth defects: holes inside the heart, deformities, transposed arteries and other things with long medical names that seem hard to explain - and repair. "There's 12 to 15 pediatric heart surgeons among the elite in the nation, and Gary's one of them. It's a very small group," says James St. Louis, an assistant professor of pediatric surgery at Brown University in Providence, R.I. He spent six months at Children's Mercy last year in what Lofland calls "finishing school." "The reason I went to Kansas City was because of the volume of congenital cardiac cases," St. Louis says, "and because of the national reputation of Gary Lofland among heart surgeons."A must-stop-destination Next year Children's Mercy will unveil the Center for Congenital Heart Disease, a hub for all of the hospital's cardiac resources. Surgeons, cardiologists, nurses, perfusionists and database employees will occupy the new department. Four new operating rooms are also under construction. Lofland's group moved into the new fourth-floor headquarters earlier this year. He plans to hire a biologist to do basic cell research, too, in hopes of finding new ways to heal hearts. "We're on the cutting edge now in terms of practice," he says. "I want this place to be a must-stop destination for anyone from around the world involved in pediatric cardiovascular services. When cardiac surgeons come to a meeting in this country, I want them to have to visit Kansas City to make their visit complete." Lofland's reputation has been boosted by his academic credentials, too. The author and co-author of scholarly research, he took over in January as editor of Progress in Pediatric Cardiology, an international medical journal published in Amsterdam.Days and nights Lofland doesn't sleep much or eat often. He's up at 5 every morning, unless he exercises. Then he hops out of bed at 4 to run or use his treadmill. (He's 6 foot 3 and 195 pounds, though he vowed to drop to 185 by the time this story was printed.) Breakfast consists of juice and some vitamins while taking a quick peek at the Weather Channel or checking sports scores. By 6 or 6:15 he's at the hospital, prowling the intensive care unit, checking on the children he operated on the day before. At 6:45 he'll meet his surgical team for official rounds, checking on all of their patients. He usually leads, striding ahead of the pack to the next patient. On most Mondays through Thursdays, he's in surgery for the rest of the day, each procedure lasting two or three hours, each day bringing two or three surgeries - and sometimes four or five. He'll do rounds in the afternoon and catch up on paperwork, usually going home between 6 and 8 p.m. Then he eats, often for the first time that day. Bedtime is 9:30 or 10, unless he's worried about an unstable patient. He says he'd rather stay up until midnight or so if he has to take a call or go back to the hospital; if he gets awakened, it's hard to go back to sleep. Of course this doesn't leave much time for hobbies or relaxation. But Lofland says he's used to work. He began working summers full time when he was 12 or 13 and also worked 40 hours a week while in medical school. "Why do you need a hobby when you can be an artist and a scientist and a clinician all at the same time? It's fun and it's challenging," says Richard Hopkins, chief of cardiothoracic surgery at Brown University and Hasbro Children's Hospital in Providence. Hopkins went to med school with Lofland, was later a colleague at Georgetown University and is now a peer and friend. Lofland's schedule doesn't really leave him time to hobnob in Kansas City society, and his name rarely appears in the newspaper, though he says he contributes to local charities. His administrative assistant, Arta Williams, says Lofland is intensely organized and demanding - but unfailingly pleasant and polite. "He always thanks you for everything," Williams says. "Before he leaves for the night, he always tells me thank you for the things I did that day. He's always been nice to me - very, very kind."Meeting of the minds It's 7:20 a.m. on a Friday, a day reserved for meetings with peers as well as patients; usually no surgeries are scheduled. Twenty-three medical experts pack a darkened, narrow conference room in the interior of Children's Mercy. There's an informal pecking order here. Lofland sits at the front table in chair No. 1. His team of nurses and a surgeon occupy the table behind him. Cardiologists and nurses fill the seats around them. Standing on a platform, surrounded by computer gear, a cardiologist narrates as the group studies big-screen monitors on the front wall. Red and blue splotches, depicting blood flow, pulse across the monitors. There's sound here, too, whooshes of blood coursing through arteries, veins and heart chambers. The group studies the EKGs, echocardiograms, angiograms - even old-fashionedX-rays. Every Friday morning after rounds, the cardiologists describe the symptoms and diagnoses for their patients, and Gary Lofland decides whether his surgery will fix the problem. Today's subjects: seven children, from 2 months old to 10 years, with congenital heart defects. It's easy for a layperson to drown in medical jargon during this conference: Cyanosis. Stenosis. Resection. Fenestration. Aortic regurgitation. Afterward, Lofland strides purposefully down the hall. Inside the examining rooms the jargon takes on faces: patients he'll meet later in the operating room.He'll fix it Lofland politely knocks on the door of an examining room and steps inside. The room is beige, but it's set off with a colorful, geometric border. Institutional but cheerful. Inside sits Bryce Huffmaster, 18, chin in hand. He's had a heart valve replaced twice, but his body is rejecting the valve, again. Lofland sympathizes but quickly explains that the problem can be corrected by using a different kind of valve. He says the new proceduredure has been proven to be more successful. The mood is glum, but Lofland promises to repair the problem. Inside door No. 2 sits Lori Sevedge, holding her 2-month-old baby, Gesserine. Born with Down syndrome, Gesserine has a hole in her heart. Lofland, in low, dulcet tones, explains that he'll fix it. Lori smiles as Lofland gives Gesserine a perfunctory chuck under the chin. Behind the third door sits Michelle Dulle and her husband, Michael. She's pregnant, and cardiologists have already figured out that her baby needs a heart operation. Michelle and Michael anxiously lean forward, holding hands, fingers intertwined, listening intently to Lofland. By the time he finishes explaining how the operation will work, the pair are grinning and then laughing. Lofland's manner soothes. "He made me feel like everything was under control - he seems to know his job," Sevedge says. "He's to the point. He was focused on what he was doing, and he was focused on her."'Don't worry about it' Lofland's soothing approach impresses doctors, too. Laura Fitzmaurice is division chief of emergency medical services for Children's Mercy. An emergency room doctor who still pulls regular shifts, she's seen the gamut of medical problems. She'd also known her whole life that she had a congenital heart defect, nothing that had ever been a problem. Until she began to get short of breath and to wheeze. Her cardiologist said she needed surgery and suggested the Mayo Clinic. More than anyone, Fitzmaurice knew this would be a serious operation - her chest would be opened and her heart stopped while a hole was closed and a muscle removed. She wanted to know for sure that surgery was necessary. So she asked Lofland if she should go. "The first thing he said was, 'I can do that. Don't worry about it. I can fixthat,' " Fitzmaurice says. "He has a persona that is very calming - it makes you relax. He does instill confidence; he lets you know that he can handle it." So rather than leave town for surgery, Fitzmaurice opted to stay in Kansas City and have her surgery at Children's Mercy. Lofland's unflappable and unpretentious style convinced her. "He's also very humble," she says. "He doesn't come across as somebody that has a big ego. He makes it seem like he's sewing up a cut - almost like an everyday thing. He doesn't make it seem like he's God or anything."His Virginia home It's 5 a.m. on a glorious spring Saturday. Gary Lofland eases out of bed, dresses and heads out the door to his white Dodge four-wheel-drive pickup. He rattles down a winding lane, stopping a few miles away at the country store. He drinks a cup of coffee and drives back. By the time he gets home, Jan, his wife of 23 years; son Kiernan, 14; and daughter Glennis, 12, will be awake. Or maybe not. At least, he says, he "won't feel as guilty about starting the tractor" and getting to work. Jan's a master gardener, so he'll spend the day moving dirt or turning ground for her. He'll says he'll stop sometimes to toss the football with Kiernan. Or go down the lane with Glennis to pick up the trash that's accumulated in the ditches. Maybe chop firewood for winter. The Loflands live in a Colonial brick house perched on a bluff above the river. The James River. In Virginia. Oh, sure, during the week, he's settled in an apartment near Crown Center. But he and Jan, a registered nurse, decided in 1997 that he'd work in Kansas City and that the family would stay in rural Crozier, Va., outside of Richmond, where he last practiced. They thought their children would benefit from the stability of staying in their schools. And the arrangement lets Lofland pull the long hours he thinks are necessary for his job. "It has let me focus entirely on the development of this program," Lofland says. He often flies home on weekends, or the family comes to Kansas City. Lofland says he finds time to talk to Jan "eight or nine times a day on the phone." He calls often enough that Glennis simply answers, "Hi, Daddy!" when the phone rings. Last year Children's Mercy hired a second heart surgeon, James E. O'Brien Jr. Until then, Lofland says, he was always tethered to the hospital. It was hard to relax when he went home to Virginia. "Now, when I'm there," he says,"I try to focus on being there. Because I know that things are under control and well-managed here."Fascination with anatomy Lofland was born in Sussex County, Del., a shipbuilding community, but he traces his Irish lineage back to 1690 in Virginia. His father was an undertaker, though he says his parents shielded him from the technical aspects of the funeral business - embalming, for instance. His father's anatomy books got him interested in medicine. By the time he was 12 he had a "fascination with anatomy" and decided to become a doctor. He got his medical degree from Boston University, then hopped around the country and the world, working for the public health service in Montana, as a resident at Duke University, for a year at the Hospital for Sick Children in London, and back at colleges in the United States. At the Medical College of Virginia, he performed "50 or so" heart transplants, an operation that Lofland describes as "really not all that exciting or challenging" compared to what he's doing now. His current work, he says, is "like starting out with a heart kit and trying to make something that actually works." Before he came to Kansas City he was the sole surgeon for the Center for Congenital Heart Disease in Richmond, Va., and a professor at Georgetown University. In Virginia he operated on children and adults. "I did the adult practice for relaxation," he says half-jokingly.Hitting the ground running Keith Ashcraft says he pursued Gary Lofland. Ashcraft, who retired from Children's Mercy in 1999, was surgeon in chief. He wanted the hospital to have a full-time cardiac surgeon - and he wanted it to be Gary Lofland. Until then Lofland had seen Kansas City only as he passed by on the interstate. After Ashcraft finally lured him for a visit, Lofland says he saw "unlimited potential." "I saw a hospital that was bound and determined to be the nicest children's hospital in the country. I found an extraordinarily competent group of people that accomplished things without any pomp." So he loaded up and moved. With his father, Joseph, driving one car and he and Jan driving another, they left Virginia at 4 a.m. on a Sunday and drove straight through to Kansas City, arriving about midnight. The next morning he went to work, performing heart surgery on two priority cases that had been waiting for his arrival. "It's called hitting the ground running, and we've been running ever since," Lofland says. Fred Burry, executive medical director and senior vice president of Children's Mercy, says, "Gary brought to the program an intensity and vision. He wanted to build a program that would not be outshone by any program in the United States." As to how much that costs the hospital, Burry will only say "a lot." Lofland says he made his financial arrangements confidential as a term of employment. Other surgeons and experts in the field say that a top, nationally regarded surgeon such as Lofland would make $750,000 to$1 million a year, or more. "One of the keys about compensation is that very high-performing people who have considerable expertise can command considerable compensation," Burry says.Legendary concentration Lofland deftly slices open the heart of Gesserine Sevedge, gingerly probing the inside until he can find the hole in parts of the top and bottom, left and right of her heart - all four chambers. Scientifically it's called atrioventricular septal defect. It's quiet in the operating room. Blood pulses through the perfusion machine; the ventilator whispers, pumping air. Lofland murmurs orders to the nurses, perfusionists, anesthesiologist and assisting surgeon. His concentration is legendary. "He is the most focused surgeon I know," says St. Louis, the Brown University professor. St. Louis says that in other operating rooms, the surgeon sometimes plays music; sometimes voices are raised. Sometimes the noise distracts. But not in Gary Lofland's OR. "If you notice, in his operating room, it's quiet; there's no music blasting," St. Louis says. "People are focused on their jobs." Before he begins cutting on any patient, Lofland says he's considered all the options, considered all possible outcomes. "I go step by step through many of these operations the night before," Lofland says, "before I go to sleep." Under the snarl of plastic tubes tethered to the heart, Lofland performs an intricate ballet of incisions and suturing to repair young Gesserine's heart. He describes it as "rearranging the three-dimensional geometry of the heart." Then he checks for leaks. As he begins removing the tubes from the perfusion machine, blood begins to flow naturally, allowing little Gesserine's heart to start beating again. He's in and out in about two hours. Lofland uses wire sutures to pull the baby's sternum back together. Pam Dennis, Lofland's first assistant, sews up the chest while Lofland marches off to the intensive care unit to brief personnel on Gesserine. As he walks, he talks. "That," he says matter-of-factly, "is infinitely more difficult than a heart transplant."Art and science "I pride myself on being a surgeon," Lofland says, explaining that there's something else that takes over beyond brains and dexterity. "What we do is an art form as much as a science. I can't draw. I can't paint. But I understand the three dimensions of the heart. It's important to me to take something that's difficult and make it look routine." In a rare moment, Lofland sheds a little of his characteristic humility: "Sometimes I come out of surgery and think: There's only a handful of guys that could do that." Tim Janicke is the photo editor for Star Magazine. To reach him, call (816) 234-4791 or e-mail firstname.lastname@example.org.For more information To find out more about the Center for Congenital Heart Disease or about Children's Mercy Hospital, call the hospital's community relations department at (816) 346-1370 or consult your pediatrician. Caption:
On the cover: Gary K. Lofland wears special headgear with a light and a television camera when he performs heart surgery at Children's Mercy Hospital. A magnifier is attached to each lens of his eyeglasses.Gary K. Lofland listens as cardiologists describe the symptoms of their patients. In this weekly conference, Lofland decides which patients will benefit from open-heart surgery.During this operation, 2-month-old Gesserine Sevedge's heart has been stopped. Lofland (right) gingerly reconstructs the tiny heart with the assistance of Eric Sandwith (left), a cardiac surgery resident at Mid-America Heart Institute at St. Luke's Hospital.Bryce Huffmaster (center) underwent heart valve replacement when he was 14 and 16. Now he is 18, and the valve is failing again. Lofland explains how he will replace it with a new one that should be permanent. At right are Huffmaster's father, Leon, and mother, Jeanie.Lori Sevedge holds 2-month-old Gesserin! e during a consultation with Lofland. Gesserine's surgery was successful. She had been lethargicnow, her mom says, she's energetic and makes baby sounds, "laughing and cooing."Michelle and Michael Dulle talk about their unborn child's heart problem. After the baby, Jonathan, was born Feb. 20, doctors decided he could get by without open-heart surgerythey snaked a catheter into his heart to repair a closed valve.Above: Unlike personnel on the periphery of the operating room, Lofland must scrub carefully and wear sterile gloves before he operates. Below: The myriad tubes that reach out of Gesserine's chest are routed to a machine that circulates and adds oxygen to her blood.Because he lives in an apartment nearby, Lofland can walk to and from work. He also has a home in Virginia, where his wife and children live.Photos (9, color)TIM JANICKE/The Kansas City Star Copyright 2002 The Kansas City Star Co.
Record Number: 10176872
Monday, October 6, 2008
It used to just be assumed that a person with Down syndrome could not really learn or adapt well and therefore they were never given an opportunity to do so. They have since learned that not only are they able to learn but sometimes there are medical reasons for some of their delays. For instance part of their speech difficulties are sometimes due to hearing loss and their reading delays actually appear worse than they are when the child suffers from poor vision. Because they now know these facts children with Down syndrome are screened at a very early age to catch these sorts of problems and correct them before they hinder learning and development. Gess had tubes put in her ears at about age 1, not because she had ear infections but because the canals in her ears were so small that they were not draining and therefore it made it more difficult for her to hear. They also screened her vision when she was only a year old. She did not need or begin to use glasses until she was four but these two things alone have tremendously affected her ability to interact with her surroundings let alone assist in her learning. Those are just two examples of how early intervention has improved the quality of her life.
There are programs to assist families with early intervention. In Kansas it is called Birth To Three. Once you enroll they help to not only check for hearing and vision loss but also offer occupational, physical, and speech therapy. They help provide you with all the resources you need to give your child the best start possible. I am a strong advocate for early intervention programs for children that have delays or challenges such as Down syndrome. I have found this tool an invaluable one in our life and thank the great ladies who visited our house each month (often more than once a month). They were the ones who taught me how to teach my daughter to do things that come naturally to most children such as rolling over, sitting up, crawling, walking and even eating. (Yes, Gess did not eat or drink by mouth for the first year of her life!)
Children with Down syndrome are also being mainstreamed into public school and other programs and they are finding that they adapt and do really well. Integration is not only helping our children but when its done at an early age it helps to curb stereotypes and bigotry that often occurs. When you have always known a child with Down syndrome to you there is nothing "strange" about them. I love watching Gess interact with other children. Young kids just accept you however you are. If they can keep that perspective as they get older the world will be a better place.
Of course some of us also choose to home school children with special needs and that movement is on the rise. While we realize that integration and socialization with peers is important we also find that being able to fully individualize their educational program gives them the greatest level of success. In either case our goal is to teach our children skills that will help them to live as independently as possible when they are older. And many are doing just that.
Adults with Down syndrome are starting to attend college and get jobs to help provide for themselves. I keep learning of or reading about some other person with Down syndrome who has done something great. Karen Gaffney seems to be my favorite. She went to college and is a certified teacher's aid! She is also a great swimmer and was the first person with DS to swim across the English channel as part of a relay team and recently swam solo across Lake Tahoe. She has a swimming camp for children with special needs which encourages them to get into shape and challenge their own abilities. What a great story of hope she offers us all!
What does the future hold for Gesserine? I don't know. What I do know is that I am not going to do anything to limit her options. If she has a dream I will encourage her to chase it even if others say it is impossible. There may be things she will not be able to do and we will accept that if and when that limit comes. Until then the sky is the limit and Gess is my inspiration. Whenever you think life is unfair or complain that you hate life remember that there are many who had greater obstacles to overcome and instead of complaining about it they smile. They find life fulfilling why can't we? Maybe its because we are the ones limiting ourselves? That's something to think about anyway.
For now Gess, like any other child, will continue to form her dreams and we will encourage her.
A talented musician
Or even a Pirate.
Wednesday, October 1, 2008
First of all, you might want to know why it is called Down syndrome. Down syndrome (not Down's syndrome) was named for John Langdon Down an English physician who was not the first one to recognize its characteristics, but was the first one who classified them as a distinct condition.
Down syndrome occurs in 1 out of every 733 births and over 400,000 people in the U.S. have it. 80% of children with DS are born to women under the age of 35, although the incidences of birth do increase with the age of the mother. "People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. " The most common traits are low muscle tone, upward slanted (almond shaped) eyes, and small stature. While all will have some cognitive delays most will have IQ's that only fall into the mild to moderate range of intellectual disability.
Down syndrome is a genetic disorder in which a person with DS will have 47 chromosomes instead of the usual 46. The most common form of Down syndrome is trisomy 21 (which is what Gess has) which is named such because it is the 21st strand of her chromsomes that has the extra one giving her three, rather than the usual pair. They believe it does this because the cell does not separate from either the sperm or the egg at or before conception and the extra chromosome is then replicated into every other cell in the body. About 95% of all cases of Down syndrome will be due to trisomy 21. The other less common forms of DS are mosaic (where some of their cells have 46 and others have 47) and translocation (where part of the 21st chromosome breaks off and attaches to another one).
There is a genetic test which will determine if your child has Down syndrome as it is not the type of condition which is diagnosed by looking at the symptoms alone. (If you want any assistance you can't get it without this test) They will draw some blood and look at the cells and will be able to see the condition. My daughter's test looked something like this. Notice how each chromosome is in pairs except for the 21st which has three.
So now that we know what Down syndrome is, what does it mean for the future of a person who is diagnosed with DS? In my next blog I will share both the positive and negative aspects of such a diagnosis. As you probably realize I will certainly be emphasizing the positive for I do not believe that the diagnosis of DS means that a life is not going to be fulfilling. Of course some of us may have to change the definition of what a "fulfilling" life must contain. I know I certainly had to readjust some of my priorities, but having done so has not only improved my daughter's life but my own as well! Life is what you make of it. That applies to every one of us with or without DS. At any rate, I hope you now have a little better understanding about what Down syndrome is. If you want to learn more visit the link below:
National Down Syndrome Society - About Down Syndrome
Thursday, September 25, 2008
Thursday, September 18, 2008
Her Beginning Steps to Reading Program is really great although at this point it has been all review. We haven't gotten into word blends yet, we are just learning the sounds letters make. While Gess is reading extremely well, she mostly reads by sight. She knows her phonetic sounds and she has successfully sounded out some words and makes some good tries with others. Still we haven't quite gotten into blending sounds very much and she can't do that in any consistent way, but we are getting there! So far we have just gone over her short vowel sounds (which we knew from last year) but this time she really seems to be getting the differences between them. She always could tell A from the others, but lets face it people, it isn't that easy to tell the difference between a short I or a short E sound in the middle of word, especially when you have slight hearing loss in one ear, but she is starting to get it. She can definitely tell you what sound each letter makes or what sound you are making if that is all you are doing, its putting it into practice at the start of a word that is more difficult, but she can do it fairly well! This is the part of the day where she has the most seat work but she likes it. Its still pretty interactive where she will have to listen for answers and then write the correct letter or match objects and such. They also have some worksheets that require cutting and gluing to help reinforce the concept and she loves those.
I am just introducing the concept of spelling by having her play Boggle Jr. While we are learning that letters make sounds and will soon be doing blends, since she has learned most of her words by sight I am just now starting to show her how those words are spelled, emphasizing the need to break it down to sound it out. Yes, we are doing this backwards from the way most people approach reading but it is working for us and that is all that matters.
We are loving Math U See as well. She has her green unit blocks and can build any numbers 0 - 9. She could probably build them larger, but that is all we have done so far. Their method is to have the child build it, write it, and then say it. So for example, she will have 10 squares and a number beside it and have to put that many blocks there. After she puts the correct number of blocks in the spaces she removes them and colors in the corresponding squares. It really is helpful for her to use her hands to build it first, she loves that part. Then she traces the number and says it. There are some that just have pictures that she has to count and it will have the choice of two answers. She traces the correct one and crosses out the other and we say this is "seven" it is not "six." Now this too is all review, she can recognize and build up to almost 20 but we are starting from a 0-9 number system instead of a 1-10 which will be a bit different but does make a lot of sense. Here is one of her finished pages.
I got her Bible, Science, and Social Studies workbooks from Christian Light Education and they are pretty basic. For Bible it just has the story with a coloring or activity sheet for her to do. That is simple enough and is followed with prayer. That is how we start each day. We have started in Genesis and so far have learned about the creation, Adam, Eve, the garden, and Cain and Abel.
I alternate Science and Social Studies each day. These books have some fill in the blanks and I usually do that writing for her or let her answer with a letter instead of a word. For instance to answer which picture is big or little she wrote in L or B. She doesn't always write the letter well but its good practice. When they ask her questions where they want her to draw an answer I usually have her go and actually find something instead. For instance they wanted her to draw something that had each shape it in. That meant she was supposed to draw four pictures one for a circle, square, triangle and rectangle. Well her writing skills won't handle that so instead she went and found me things with those shapes and I just wrote down what she brought me. This makes it a more hands on experience and lets her move around a bit. It also makes it a lot more fun. We do that sort of thing so much that she now stands up when I get the book out because she knows its a time when she gets to move around. So even when we are just reading from the books sometimes she does that standing up. There is nothing wrong with doing a lesson on your feet instead of in your chair! So far in Science we have learned about how colors, shapes and sizes help us to sort and learn about objects. For instance they used a banana to tell how its different colors let us know if it is good to eat (green is not ripe, yellow is good, brown is rotten). In Social Studies we are learning about our families and different ways in which we communicate.
We are also using Handwriting Without Tears but I did not get this years curriculum because I did not think she was ready for it yet. She was still struggling with last years. Well, she sure has matured a bit over the summer and our activities seem to be strengthening her motor skills because she is doing a pretty good job of keeping the letters in the lines. So the other day I went ahead and ordered the latest books and we will start fresh with them when they come in. In the meantime she is getting some practice while doing her other workbooks and we are using her blocks to make the letters we study each day in her reading program. She then writes it on the chalkboard. I am anxious to get the new materials in though!
We also go the library every Monday and of course there is Ballet on Tuesday. I also have a ladies bible study that I attend each week so that gets her a couple hours of playtime with other kids (some ladies have kids under 5 and some also homeschool and have kids her age and older). We try to get the park as often as we can (I am so glad it finally stopped raining so that we can) and Grandma babysits her on Friday afternoons while I do some volunteer work at an afterschool youth center in town. I hope to one day eventually bring her there with me.
I plan to enroll her in AWANA at church but she has such a hard time waiting for her turn during game time and stuff that I am waiting until things calm down a bit. The first few weeks are pretty hectic. I know she will do good with the memorizing, I just want to make sure they have enough hands to handle her (she has a tendency to wander off). They of course encourage me to bring her on in, I just want to make her transition in as smooth as possible. For those who do not know much about AWANA it stands for Approved Workman Are Not Ashamed or something like that and it is a Bible club that encourages bible memorization. They earn awards every time they get so far in their books and they have uniform vests that they wear and such. I got really excited when I found out that they offered help for children with special needs! For the younger kids they have all the verses shortened to make it easier for them to memorize. They have it so you can get some labels and print the shorter verses up and just place them over the original verses inside the book. Once I saw that I knew that Gess could not only attend and have fun, but be able to do the work too! For the older kids they have a leaders guide that helps the leader find ways to make their inclusion a success.
I tried to get her into Brownies but apparently no one else in our town with kids her age are interested. There is no Brownie troop at this time. I even offered to lead if they found others to join but I guess they had no luck. Maybe when she gets older she can start up in Girl Scouts.
So that's where we are at after one month of school. I am having a blast preparing my lessons each week and teaching them each day. Gess is just a sponge, she loves to learn when you offer the information in a fun and interactive way. Once she puts her hands to something it generally sticks with her!
Wednesday, September 10, 2008
Down Syndrome Parents: Palin Is Role Model
(CBS) .. --> sphereit start -->When Sarah Palin was four months pregnant with her fifth child, she received life-changing news: her baby had Down Syndrome. Today, five-month-old Trig is one of 400,000 Americans living with Down Syndrome. And the Palins' decision to have the baby has made her a role model to the parents of some 5,000 children born with the genetic disorder each year.
While most Americans hadn't heard of Sarah Palin before she became John McCain's running mate, she was well known to many parents of children with Down Syndrome, CBS News anchor Katie Couric reports.
"Gov. Palin went through the same thing we did," said parent Sharon Vopal. "Same prenatal testing; same screening."
Advances in prenatal testing mean more and more expectant parents are finding out earlier. And for some, the reality is too grim to bear.
"Forty percent of babies with Down Syndrome are going to be born with congenital heart disease," said geneticist Robert Marion. "Every baby with Down Syndrome has developed mental disability. A small minority grow up to be independent."
Marion says the vast majority of women who receive a prenatal diagnosis terminate their pregnancies.
"That is such a personal decision and it shouldn't be colored by anything that the doctor says to them about the diagnosis," Marion said.
But that isn't always the case, according to Vopal, who lives in Basking Ridge, N.J.
"I knew right away when she [the doctor] walked in," Vopal said.
Sharon and her husband Jim were expecting twins when tests revealed that one of them has Down Syndrome.
"What did she recommend? Did she say what your options were?" Couric asked.
"She said, 'You're early enough along in your pregnancy that you can terminate,' and in our case, since it's twins, the term she used was 'selective reduction,'" Vopal said.
But Jim is Catholic, and while Sharon is not, they're opposed to abortion - just like Gov. Palin.
"After telling her that we would not terminate, nothing else was discussed," Vopal said. "No information. No resources. No help. No advice. They gave Jim a business card for us to call a genetic counselor, if we chose to. And they led us to a side door."
Katie Couric's Notebook: Down Syndrome
The Vopals' experience is a common occurrence, says Amy Allison, executive director of the Down Syndrome Guild of Greater Kansas City.
"What we have found historically is that physicians are giving biased information when they're presenting prenatal diagnosis," Allison said.
According to a 2005 survey of nearly 1,300 parents of children with Down Syndrom, a majority reported that the doctors "did not tell them about the positive potential of people with Down Syndrome."
So advocacy groups like Allison's have embarked on a campaign to educate physicians and, in turn, expectant parents about the genetic disorder.
Through a program called "Changing Lives," parents of children with Down Syndrome go directly to doctors and present their version of Down Syndrome 101, giving advice on how to break the news.
"Families can walk out their doors feeling isolated and alone, or they can walk out feeling like they've got a support system," Allison said.
And often, the supporting cast steals the show.
One Down Syndrome teen, Jack Murphy, said: "I want people to know about me - that I'm outstanding, outrageous, smart and intelligent and I know I'm good looking."
The Vopals have now had their twins, and they hope - as the rest of the country learns more about Sarah Palin - Americans also learn more about Down Syndrome.
"She made her choice and we made our choice and other people will make decisions that are best for them," Jim Vopal said... --> sphereit end -->