31 for 21 - Day 15 - A Little Bit Pregnant

Shameless.  Right?  My hope is that today's title will suck you in and get you to read this entire post and help spread education and awareness.  Before we get to being a little bit pregnant, this week's Cowgirl Up! National Down Syndrome Awareness 31 for 21 contest winner is Miss Emily O.  My husband drew the name out of all the comments this week and Emily O. will be receiving a $10 Starbucks card along with a copy of Amy Julia Becker's new book A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny.  Congratulations, Emily!


I thought that blogging about Down syndrome for 31 days in a row would be really, really hard.  There are definitely days that I'm struggling to figure out what to write, but usually it's more a struggle to sit down and find the time to try and put something meaningful together.  Some days the material just comes to me.  Today was one of those days.

I received a phone call from a woman I have never met and don't know.  She had some questions about a pre-school and at one point in the conversation she said, "You have a son with a mild case of Down syndrome, right?"  


Here is my disclaimer-- I did not know very much at all about Down syndrome before I was pregnant with Joey.  I was incredibly ignorant and I completely and totally own and acknowledge that ignorance.  In this journey with Joey I am reminded again and again of how little people know about Down syndrome.  As we go along this journey I feel I am getting better and better at being an advocate.  And by advocate, I mean someone who tries to help educate in a loving and meaningful manner without making other people feel ashamed or uncomfortable.  So when I share these stories, I hope you understand the spirit in which I share them.  I hope that others find the humor and irony in every day life.


Much like I have finally figured out what to say when people tell me that those who have Down syndrome are "such" happy people (my new response is: "That is a total myth.  Individuals with Down syndrome experience a wide range of emotions.") I now know my response when people  ask me how "severe" Joey's Down syndrome is.  


My response to this most likely well-meaning woman (I try to believe that most people are coming from a good place-- it just makes it easier to believe that.  I also believe that sometimes when there is a topic that we don't know very much about we sometimes say the "wrong" thing without even meaning to) was, "Actually Joey has total Down syndrome.  You either have it or you don't.  Just like you can't be a little bit pregnant, you can't have a little bit of Down syndrome." 


In my effort to be more mature, more loving and less judgmental I also went on to tell her that until a year ago I knew very little about Down syndrome, but that people who have DS are just like other people and have a wide range of abilities.


This is what Joey thought about having a "mild" case of DS. . . 

Below are some very basic and straightforward facts about Down syndrome.  I found this great description on Tori Spelling's blog this week, which features a birth story by her friend Lisa.  Lisa's son, Blake was diagnosed with Down syndrome after he was born.  I LOVE the title of Lisa's guest blog-- it is called "Down But Not Out".  Check it out here.  Below is a very cool illustration of the chromosomes that each of us carry.  A person who has Down syndrome has 3 of the 21st chromosome, which you will notice, is the smallest chromosome. 

Some Down Syndrome Facts

I.    Trisomy 21 occurs when three copies of the twenty-first chromosome is created instead of only two. This results in the person possessing 1 extra chromosome (47 chromosomes instead of 46).

 

A Karyotype of a Boy with Down syndrome. A Karyotype is an organized profile of a person's chromosomes.

II.    Down syndrome is the most common chromosomal disorder in the world. Approximately 1 in every 733 babies is born with Down syndrome, representing approx. 5,000 births per year in the United States.

III.    Approx. 6 million people in the world and more than 400,000 people in the United States currently live with Down syndrome.

IV.    Down syndrome occurs at conception, so nothing in the pregnancy can cause Down syndrome to occur. Neither parent is the “carrier” of the extra chromosome. It is a completely random genetic “error”. It is caused by an error in cell division called nondisjunction. Researches do not know why this occurs.

V.    80% of babies born with Down Syndrome are born to women under 35 years of age.

VI.    Children with Down syndrome can have mild to moderate impairments (physical and/or cognitive) but it is important to note that they are more like other children than they are different.

VII.    The average person with Down syndrome can live to be upwards of 60-years-old.

VIII.    Most children attend their neighborhood schools, some in regular classes and others in special education classes. Some high school graduates with Down syndrome participate in post-secondary education (University or College). Many adults with Down syndrome are capable of working in the community and living alone, but some require a more structured environment.

Remove your fears, questions and prejudices about people with Down Syndrome by taking the time to educate yourself.

National Down Syndrome Society: http://www.ndss.org/.

Finally- here are some photos of Joey eating his new favorite breakfast.  He has graduated from yogurt (which he still enjoys on a regular basis) to cinnamon waffles with butter on them.  Umm... delicious!  His progress with eating different textures is one of the things we have been working hard on every day and we are so proud of his progress.  This little boy amazes us every single day.