## Monday, October 20, 2008

### October School Update

School is still going really well, I think we really made excellent choices when picking our curriculum. Of course we spent quite a bit of time researching our options and really focused on ones that seemed geared towards Gesserine's strengths.

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.

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

### Gesserine's Heart Surgery

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## Kansas City Star

Kansas City Star, The (MO)

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
Page: 14
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

### Life With Down Syndrome

As you all probably know, my daughter is only 6 (almost 7 years old) so I do not really know what the future holds for her. What I do know is that it offers her more than I ever dreamed it could when we first got the diagnosis that she had Down syndrome. There have been great advances both medically and socially that have allowed a person with Down syndrome to live a fulfilling life. One of those great achievements have been early intervention.

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.

Maybe she will be a fireman

A talented musician

Or even a Pirate.

Aye Mate!

## Wednesday, October 1, 2008

### What is Down Syndrome?

Some of you might not know this but October is Down Syndrome Awareness month and at this time support groups all across America will be having Buddy Walks to raise funds to support education, research and advocacy for people who have Down syndrome. Many people do not really know much about Down syndrome. I know that when my daughter was born I certainly did not. My knowledge of DS was limited to what I learned while watching Life Goes On which starred Chris Burke who has DS. Of course these days, people do not even know what that show is, let alone what DS is. All I knew was that people who had Down syndrome had intellectual disabilities (which wasn't how it was referred to at the time). I knew that they were now attending school with their peers, but I knew that it was tough because they were not on the same level as their peers. What I didn't know was that the mental aspect was only one of many conditions that accompany DS. Many people who have Down syndrome often suffer from heart defects, thyroid trouble, vision and hearing problems, and many other medical conditions. So just what is Down syndrome and how does having DS affect the life of the person who has it? While I will probably not be able to answer all your questions, let me at least start by sharing some basic information about Down syndrome.

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