Today is the day we use to raise awareness for Down syndrome. This particular day (3/21) was chosen because it is the 3 copies of the 21st chromosome that causes Down syndrome. On this day, we don our blue and yellow shirts, pull on our crazy, mismatched socks, and head out to participate in random acts of kindness. We do all of this to advocate for our children, siblings, cousins, friends, and acquaintances who have Down syndrome. Our hope is to show the world who these people are: people who are smart, people who are kind, people who have dreams, people who are more like us than they are different.
Why the crazy socks you may ask? There are a couple of different reasons. One is because when chromosomes are stained and lined up in a karyotype, they resemble pairs of colorful socks. A second reason is because if you saw a person on the street wearing mismatched socks, you might ask them why. This gives us a chance to tell you that we’re advocating for people with Down syndrome.
Today, our first World Down Syndrome Day with Ava, we went out to a park and enjoyed the sunny weather with some of our friends from our local Down syndrome group. One mom brought some blue and yellow balloons (the colors used for Down syndrome awareness), and we all sat on our blankets and shared stories and basked in the adorableness that is our children.
A few facts about Down syndrome: 1) There are three types: Trisomy 21, mosaicism, and translocation. The most common is Trisomy 21 (95% of cases), which is when one parent’s 21st chromosome gives two copies instead of one (this is what Avalynn has). Mosaicism (1% of cases) is when some cells have an extra 21st chromosome and others do not. This one tends to be a little more difficult to diagnose. Translocation (4% of cases) is the only type of Down syndrome that is hereditary. 2) About 1 in every 700 babies in the U.S. is born with DS, and while the chance of having a baby with DS is increased for women over 35, 80% of these babies are born to women under 35 because their fertility rates are higher. 3) People with Down syndrome have cognitive delays, but it is not on a spectrum like Autism. Most cases are mild to moderate, and it can be compared to one person being great at dancing while another is fantastic in math. Each person with Down syndrome has different strengths and weaknesses, just like you and I. 4) The life expectancy of people with DS has risen from age 25 in 1983 to age 60 today. This can be attributed to the fact that we have educated ourselves on the condition and embraced it. Most states offer free early intervention for children ages birth to three years in order to give these children the best start possible. Years ago, if children were born with Down syndrome, they were put directly into an institution which made it difficult for them to successfully develop. 5) People with Down syndrome can go to college! They can have jobs! There is a nonprofit organization called Ruby’s Rainbow which grants people with DS scholarships to attend college. They are currently wrapping up their 3/21 pledge to raise $100,000 by the end of today. Go here if you would like to donate and help them reach their goal (or even exceed it)! (Some facts were taken from the National Down Syndrome Society at http://www.ndss.org)
Avalynn is now 7 months old! And today she proved that she could sit up by herself for minutes at a time! She continues to amaze me with how great she’s developing. She’s so attentive to everything and everyone, and I can tell she really focuses on what she’s trying to do. Still no attempt to crawl as of yet (it’s obviously not something she’s interested in), but she is starting to show frustration at being stuck in one place. So hopefully she’ll feel motivated soon (as soon as she starts crawling, I’m probably going to be begging her to just stay put *eye roll*).
This kid brings me all kinds of joy. She is responsible for all of my smiles, all of my giggles, and my complete lack of sleep (moms, you know the struggle). I am so glad to live in this day and age where I can plan for her future and know our dreams for her can be accomplished. To live in a world that can accept her and love her and help her thrive. The people out there advocating for her rights and inclusion have turned my question marks into periods. For all the times I’ve wondered, “Will she be able to do that?” The answer is, “Yes. She. Can.”