Saturday, March 21, 2009

Today is Wold Down Syndrome Day!!!!

March 21st......3- 21 (ie three 21st chromosomes) what causes Down Syndrome.

Down syndrome
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Down syndrome Classification and external resources

From Wikipedia........

Down syndrome, Down's syndrome, or trisomy 21 is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome.

It is named after John Langdon Down, the British doctor who described the syndrome in 1866. The disorder was identified as a chromosome 21 trisomy by Jérôme Lejeune in 1959.

The condition is characterized by a combination of major and minor differences in structure. Often Down syndrome is associated with some impairment of cognitive ability and physical growth as well as facial appearance. Down syndrome in a baby can be identified with amniocentesis during pregnancy or at birth.

Individuals with Down syndrome tend to have a lower than average cognitive ability, often ranging from mild to moderate developmental disabilities. A small number have severe to profound mental disability. The incidence of Down syndrome is estimated at 1 per 800 to 1,000 births, although these statistics are heavily influenced by the age of the mother. Other factors may also play a role.

Many of the common physical features of Down syndrome also appear in people with a standard set of chromosomes. They may include a single transverse palmar crease (a single instead of a double crease across one or both palms, also called the Simian crease), an almond shape to the eyes caused by an epicanthic fold of the eyelid, upslanting palpebral fissures (the separation between the upper and lower eyelids), shorter limbs, poor muscle tone, a larger than normal space between the big and second toes, and protruding tongue. Health concerns for individuals with Down syndrome include a higher risk for congenital heart defects, gastroesophageal reflux disease, recurrent ear infections, obstructive sleep apnea, and thyroid dysfunctions.

Early childhood intervention, screening for common problems, medical treatment where indicated, a conducive family environment, and vocational training can improve the overall development of children with Down syndrome. Although some of the physical genetic limitations of Down syndrome cannot be overcome, education and proper care will improve quality of life.[1]

This is one of the nicer descriptions of T-21 (new abbreviation) uses the appropriate new terminology, cognitive disability versus retardation...... still lists all the horrible things that could be wrong (again I don't disagree with those)..... in fact I think my kiddos have some if not most of those things.

But it doesn't mention any of the positive, fun & somewhat irreverent things Eric & I have gotten to experience......

  • fierce love that does not matter what is on TV or we are having for dinner or how much money we mad or didn't make that day

  • an understanding that God does make "mistakes" though my children are not one of them (I am thinking TICKS...... feed the birds something else)

  • what unconditional love really is.....parents of typical children (which I know have 2 1/2.....decision still out on Emerson!) get some of this but my other five bring me so much and I found I have a lot more for them

  • how happy they have made my life with new friends, lots of things to do (I swear I have my own parking spot at the hospital & doctor's office) and occasionally I do feel like I went to medical school

  • I have learned about prejudice too...... didn't have a lot of experience with that before..... but people are either warm and accepting of my children or they are hateful....... can't look at them or make rude comments....... that is the hardest thing..... but there are lots more good ones than bad
  • how to have a lot of fun doing normal eating french fries or brushing teeth or sweeping the floor or doing laundry
  • that bouncing can be a whole family activity
  • that it is physically impossible for all of to go somewhere and all come home in exactly the same clothes

So here are a few photos of my kids........ doing what they do best..... being kids


Friday, March 20, 2009

Making Fun of People I Love

Here is a copy of the letter I sent our President this evening...... there are lots of other things I would like to say....... but I tried to keep it on point and not as rambling as I usually am.

Dear Mr. President Barack Obama,

I will likely be one of thousands (I wish millions) of letters you get regarding your comments about your bowling score last night on the Jay Leno Show.

I was proud to vote for you this past November. I was even prouder listening to your inauguration speech in January. I have watched you with your wife and children on TV, in the print media and I have fallen in love with your family and all you represent in America. But last night you not only made me angry. You set a horrible example for your children as well as other people and their children. You inadvetantly implied that making fun of the cognitively and physically disabled is allowable.

I am a very proud mother of eight children. I have five beautiful ones that we adopted with Down syndrome, as well as three biological children. All of my adopted little ones were adopted from the US foster care system. They represent several races and a lot of different abilities!

Your insensitive joke in front of millions of Americans implies that it is “ok” to make fun of this population. Most times I ignore or choose not to hear these harsh words (like retard, or short bus, or the Special Olympics) and other joking comments my friends, co workers, professionals and other people make in my presence or in the presence of my children. As long as these people do not do so with the intent to really harm my children or purposefully make the joke about them.

How can I do this…… well I chalk it up to ignorance and small world education and very little thought given to how this and other words really can affect people. However, you are brilliant man! You are not a sophomoric college student or a “Ben Stiller “type of character in a movie……. This is why I am ANGRY! MAD! HORRIFIED and SAD!

When you, Hollywood actors / TV personalities and other educated people make little comments (like last nights) even with no amount of disparaging intended toward my children, it shows all others it is OK!

Believe it or not, my biological five year old knows that people make fun of her because of her siblings, she doesn’t understand why she just cries and wants to understand what is wrong. And with your comment last night you gave them permission to continue to do this…. Because they heard a smart, articulate man…… our current leader….. say this so it is ok.

You spoke these words on April 11th 2008.
"We must build a world free of unnecessary barriers, stereotypes, and discrimination.... policies must be developed, attitudes must be shaped, and buildings and organizations must be designed to ensure that everyone has a chance to get the education they need and live independently as full citizens in their communities." -- Barack Obama.

I voted for you “not because you were the lesser of two” but because you were above what I have seen from most politicians in my lifetime. You had an agenda and given thought to the plight of the disabled. You do not see health care access as a privilege, your sense of humor is actually really amazing (most times) and you believe in really helping and changing America in a direction I feel we need to go~! (and we both have a daughter named Maliah….though I spell it right & a great Rainbow in our yard)

So please do the things you promised and show my children you care by reforming health care, making their education the best available, helping elevate poverty, and leading the USA in a better direction…… and remember the example you set…… and try not make a little girl cry because someone repeats you joke in front of her and she realizes that you (and the person repeating it) were making fun of her family!

Mom of Eight in Eureka, MO

Jane Leahy-Smith

Do I wish for a personal apology.....yes.......

Do I want him and his wife to help with the Special Olympic event on the 31st of the month for making America aware of how hurtful the word "RETARDED" or any variant is to some people.... would be a nice way to make up to a bunch of people who would all likely beat him at bowling (I know Colin can!!!!) Maybe he should get some bumpers.

Do I want a congressional bill making YOU TUBE to remove the horrible comments and videos some people post about adults and children with developmental disabilities....that would be nice

I am I will settle for ...... hmmm....ok ......I just want him to fix it so my kids can grow up and not have to worry about having to not have a job so they can have health care!