World Down Syndrome Day!

I am SO excited because today is WORLD DOWN SYNDROME DAY!!

March 21st, 2012 marks the 7th anniversary of World Down Syndrome Day and for the FIRST time in 2012 this day will be officially observed by the United Nations!   

So why March 21st?

Well 3-21 symbolizes the three copies of the 21st chromosome present in people that have Down Syndrome.  So Ollie Faith has 47 chromosomes instead of 46 like me. 

Today I want to educate some people on what Down Syndrome means.

How often does Down Syndrome occur??    Anyone could potentially have a baby with Down Syndrome (although I like to think it's the lucky ones that truly receive this gift!)  The frequency of Down Syndrome occurring is about 1 in 733 births.  Moms older than 35 are at a higher risk of delivering a child with Down Syndrome, however most babies with Down Syndrome are born to younger moms because the younger population is having more babies.  It is estimated that 90% of pregnancies are terminated because of a prenatal diagnosis of Down Syndrome - which that number makes me sad.

How does Down Syndrome occur??    Basically it happens immediately.  The sperm has 23 chromosomes & the egg has 23 chromosomes & when they come together it forms a fertilized egg, or a baby with 46 chromosomes.  In the case of Down Syndrome either the egg or the sperm contains 24 chromosomes resulting in an extra copy of the 21st chromosome so the baby has 47 chromosomes instead of 46 - 3 copies of the 21st instead of two.  So nothing Jade or I did caused the extra chromosome.  It just happened to be there and the lucky one that stuck :)

How severe is Down Syndrome??  That question is not easily answered and I have been asked it several times, much to my displeasure.  No one can predict the cognitive abilities that people with Down Syndrome will have, especially as babies.  People with Down Syndrome are just like you and I.  I loved Science & Social Studies & excelled in those areas, and I was by no means a skilled volleyball player and I am socially shy.  One person with Down Syndrome may be wonderfully outgoing & social, but struggle with something like reading while another person with Down Syndrome may read at a higher level but struggle somewhere else in life.  Everyone is different and unique.  That is why we say people with Down Syndrome are more alike than different.

What are people with Down Syndrome like??   Well this question is easy to answer.  Again, they are just like you or I.  They have a full range of emotions.  They can be happy, sad, angry, stubborn, opinionated - they are not cookie cutter people.  They are not happy angels all of the time - this is a very very very common misconception that people say to me all the time.  Trust me, Ollie Faith is one happy little girl, but she's as stubborn and easily mad at her siblings when she doesn't get her way.

What does the future hold for people with Down Syndrome??  This question is again something so difficult to answer.  Thirty years ago babies with Down Syndrome were still pushed to be institutionalized in the United States.  As far as I know there was no therapy or very little therapy.  Inclusion & integration into the "real" world wasn't something very common.  However, I know of a 30 year old who lives on his own & does amazing things regardless of what society thought was the norm at that time.  He's not the only one - many people with DS hold jobs, have their own place, and some even get married.  Now, Ollie Faith, has in home therapy for physical, developmental, and speech weekly.  Inclusion & disability awareness is becoming a more talked about agenda.  People are pushing for disability rights.  In thirty years the world may be a totally different, and better place for Ollie Faith.  I am very hopefully that in 30 years Ollie will have more opportunities than ever before.

What are my plans for Ollie??    I for one do not have any set expectations for her and I plan to let her plan her own destiny.  Her future may contain a job, marriage, her own house, or living with me and yearly vacations to Disney which sounds great by the way.  No matter what her future holds, it is her future just like my other kids & I will allow her to captain her own ship & I will push her along toward those goals the best I can.  I plan to treat her, include her, integrate her, love her, and hold my ground with her the same as my two typically developing children. 

What are the common misconceptions of Down Syndrome or things that personally drive me bonkers??    First off, I hate Downs being used as an adjective - for example Downs baby, Downs child - you don't label other children as glasses girl or freckles boy.  I would prefer Ollie not have the word Downs placed before her name because of her diagnosis.  I want her to be viewed as a child first.  I now very much hate the word retarded.  It's thrown around so loose lipped in our generation & every time I hear it I literally want to puke or I feel like I'm stabbed in the chest - so please avoid that word around me or I will speak up.  I do not like it when someone tells me how amazing I am for keeping Ollie.  It was never an option in my mind for me to abort her and I do not deserve a metal for delivering her.  She is my child.  I am her Mom period.  I love her - and trust me I'm not any more amazing than most moms - yes I yell and say cuss words just like others do.  I dislike pity of any kind.  If you pity me because you view her as a life long burden, it's only because you don't know what in the crap you are talking about so get educated because I am blessed by a teeny tiny bundle of 47 chromosomes.

So I hope my blog today taught you at least one thing about Down Syndrome that you did not know.

 

Now I ask you, please share with me what you have learned from Ollie Faith about Down Syndrome.

I have personally learned SO much.  I have mainly learned that Down Syndrome is not something to be feared, especially if you are going to welcome a member of Down Syndrome into your family.  Please do so with open arms because you are about to get your life enriched big time!!