The PALS Present!

Sporting their PALS shirts!

Rockin' to the music! You go!

They danced to several musical numbers and did a great job, you could tell that they were really enjoying it and appreciated the applause!


In my home town of Cedar Hills, Utah the annual Family Festival was held on Friday July 26, 2008. It was a great time to watch the parade, play on the blow up toys, enjoy the different events, eat, and most of all watch the kids from PALS perform! I am so glad that the city I grew up in helps these wonderful people develop and cultivate their skills and allows them to perform. Most of them are very outgoing and I even got to meet a few of them! Thanks Cedar Hills for letting them present their show. What an inspiring group!

Check this out

Here is a story about a family who chose not to abort their child who was tested for DS while in the womb. There is also a brief bit about a family who chose to abort their child. This is a very touchy subject, yet it intrigues me. There is a lot to learn from this! Follow this link:
http://www.cnn.com/video/#/video/health/2008/04/05/rowlands.down.syndrome.cnn?iref=videosearch

Myth vs. Truth

I found this very interesting article and many of the myths I have heard. I hope that you take the time to read this so that you are aware of the myths and truths about DS. Become educated about these special people!


Myth: The condition is called Down syndrome because of the appearance of people who have it.
Truth: The condition was identified by a 19th century English physician named John Langdon Down (it was simply his last name).
Myth: Down syndrome is rare.
Truth: Down syndrome is the most common genetic condition, occurring (approximately) in one of every 800 to 1,000 births, or approximately 5,000 births per year in the United States alone. Down syndrome affects more than 350,000 people in the United States.
Myth: Old parents are the cause of Down syndrome.
Truth: No one "causes" Down syndrome. During conception, an occurrence takes place resulting in an extra 21st chromosome. 80% of children born with Down syndrome are born to women younger than 35-years; however, the incidence increases with the age of the mother.
Myth: People with Down syndrome are severely mentally impaired.
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of cognitive delay and are definitely able to be educated.
Myth: Most people with Down syndrome live in institutions.
Truth: Today, while growing up, people with Down syndrome reside at home with their families and are active participants in educational, vocational, social and recreational community activities including sports, camping, music and art programs. Individuals with Down syndrome socialize with people with and without disabilities. Adults with Down syndrome have jobs and may live in group homes, in their own homes, and other independent housing arrangements.
Myth: Parents will not find much support as they raise their child with Down syndrome.
Truth: In almost every community of the United States, there are parent support groups and community organizations directly involved in providing services to families of individuals with Down syndrome.
Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome are included in regular academic classrooms in schools across the country. Sometimes students are integrated into specific courses, and sometimes they are fully included in the regular classroom for all subjects. The degree of mainstreaming is based on the abilities of the individual; but the trend is for full inclusion in the social and educational life of the community.
Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else.
Myth: Adults with Down syndrome cannot get married.
Truth: People with Down syndrome date, socialize and form ongoing relationships, and many do marry.
Myth: Down syndrome is not curable.
Truth: Research about Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

http://www.indianadsf.org/about_down_myth.cfm

The Memory Keeper's Daughter

I have recently read this book and it is remarkable! I would have to say that DS children are probably some of my favorite people on the earth. It is so fun to get to know, serve and love them! They are a joy to everyone's lives and they are fun to be around. The Memory Keeper's Daughter, however, is set in the year 1964. This is the time when it was still appropriate and acceptable to send these children to institutions. The caption about this book reads:

"This stunning novel begins on a winter night in 1964, when a blizzard forces Dr. David Henry to deliver his own twins. His son, born first, is perfectly healthy, but the doctor immediately recognizes that his daughter has Down syndrome. For motives he tells himself are good, he makes a split-second decision that will haunt all their lives forever. He asks his nurse, Caroline, to take the baby away to an institution. Instead, she disappears into another city to raise the child as her own. Compulsively readable and deeply moving, The Memory Keeper's Daughter is a brilliantly crafted story of parallel lives, familial secrets, and the redemptive power of love."

How do you feel about institutions? Should we still send these children with disabilities there? Would they learn more? If you were the nurse in this book, would you have taken the baby to the institution or kept the baby like she did?

Can these children with special needs do anything they want? Should they be allowed to participate in typical schools, sports or other groups? What are your thoughts or concerns with including those with disabilities?

To test or not to test?

by Fox News Health

A test that can detect Down syndrome from the blood of pregnant women, which would be the first reliable noninvasive prenatal test for the chromosomal disorder, has raised the prospect of routine screening for the condition for every expectant mother who wants it.

The experimental procedure, developed in Hong Kong, has been shown to diagnose 90 percent of Down’s syndrome cases in a small trial, while also correctly identifying 97 percent of fetuses that do not have the condition.

If its accuracy can be improved and it is validated in larger patient trials, which scientists believe should take three to five years, it would transform prenatal testing for Down’s.

At present this is provided only for women at high risk of having a Down’s baby because the current procedure is invasive and can cause a miscarriage. It requires amniocentesis or chorionic villus sampling (CVS), which involve inserting a needle into the womb to remove amniotic fluid surrounding the fetus, or a small piece of the placenta.

If you had the choice, would you want to know if your baby has Down Syndrome? If you found out that she does, what would you do about it?

http://health.blogs.foxnews.com/2008/06/23/down-syndrome-test-poses-ethical-questions/

Trisomy 21

What is Down Syndrome (DS)? Many people are not sure what DS is, yet it is a very prevalent syndrome around the world affecting all races and genders. Down Syndrome or Trisomy 21, is a chromosomal disorder affecting the 21st pair of chromosomes. This is where, rather than being the typical 2 chromosomes, there are 3 at the 21st pair as shown above. “Down syndrome occurs in one out of every 733 live births, and more than 400,000 people in the U.S. have this genetic condition” (http://www.ndss.org/). There are certain characteristics of those with DS including: flattened facial features, protruding tongue, small head, upward slanting eyes, and unusually shaped ears. Other characteristics that may not be as noticeable are: poor muscle tone, broad, short hands with a single crease in the palm, short fingers, and excessive flexibility (www.mayoclinic.com/healthy/down-syndrome).