Thursday, June 10, 2010

So, what do you know about Down Syndrome? Not much? Me either. Here are some basics from the National Down Syndrome Society (taken from

"• Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

• Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.

• Down syndrome occurs in people of all races and economic levels.

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

• 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.

• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

It should be referred to as Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it."

So there you have it, Down Syndrome 101. I will share more with you as I learn more myself.

I got in touch with a parent from the Down Syndrome Association of Central Kentucky today. She has a 4 year old girl with DS who is already reading! I am going to meet her at her house next Friday. We had a great talk, and I am looking forward to our visit next week. She gave me some leads to get started with physical and occupational therapy through a state program that Levi automatically qualifies for and has given me insight on how to go about getting EARLY intervention started and fighting any suggestions of waiting until he is older to get started. I am already thankful for our friendship and her support. I look forward to meeting the other parents in the group, too. Monthly meeting start again in September, but they will have some other functions this summer. There is a picnic this Sat. but we aren't supposed to have Levi out and about yet. Too bad we'll miss it, but there will be plenty more activities to attend in the future.

Adam is spending the night with Grams and Grandpa tonight. I felt so bad about him leaving b/c I feel like I can't give him the attention he needs right now, but he had a blast and was happy to leave us to go see his beloved Grandpa. Before Connie was even ready to leave, he was walking around the house, waving both hands in the air, saying " you" to me & Wes. He was ready to go! I am so glad he has such a great relationship with them and has bonded so well. It is good for him, for them, and at times like this, it is good for us, too!



Leah said...

Thanks for sharing that info. LOVE all the pictures as always! :)

Cicely said...

Hey April First steps is a great early intervention program. Kerri Covington used to provide Pt services through first steps.She would be great if she still is a provider for them. All services come to your home. I worked for them for several years and can help you through the meetings and your rights if you need it. Just let me know!

Rene said...

Thank you for sharing the info about DS. Just take each day one at a time and enjoy your beautiful children. Love the pictures of Adam and Levi. You look beautiful as always with your two boys.