World Down Syndrome Day

Today is World Down Syndrome Day.  The date, 3/21, represents 3 copies of the 21st chromosome.

It comes at a great time this year, in light of the President’s recent faux pas.  (By the way, the best response to this that I have seen is from Sarah, an expert bowler and an eloquent blogger, who just happens to have 3 copies of her 21st chromosome.)

Down syndrome was named after Dr. John Langdon Down, who first described the condition.  The correct terminology is just that:  Down syndrome.  Not Down’s, or Down’s Syndrome, because Dr. Down did not have the condition (so we do not use the possessive form,) and “syndrome” is not capitalized because it is not a proper noun.  You may also see Down syndrome abbreviated online as DS or Ds.

Down syndrome is the most common chromosomal anomaly, occurring in approximately 1 in 733 births in the US.  However, as common as it is, there are less and less babies being born with the condition, because about 92-93% of mothers who receive a prenatal diagnosis of Ds choose to abort the baby.  This comes to about 65,000+ babies aborted each year due to a prenatal diagnosis.  I can’t tell you how much it saddens me that so many lives are lost.  I am sad not only for the babies, but also for the parents who are missing out on having an amazing child.  And, I am sad for Matthew, who will have less friends who are like him.  With fewer people having the condition, others will know less about it, there will be fewer resources for him and less research done about Ds.

When speaking about someone with Down syndrome (or really any other
disability), parents and individuals with the condition prefer it if you put the person first.  For example, “Matthew has Down syndrome.”  We would never say, “Our Down syndrome son,” because that lets the condition define him.  By now, you should know that Down syndrome definitely does not define our son, nor does it define any other person who has an extra 21st chromosome.  Each individual is just that . . . an individual, which is why we also avoid making “blanket” statements about people with Down syndrome.  Statements such as “They are always so happy,” are not only untrue, but offensive because they lump everyone with the condition into one category.  To be safe, just avoid statements that start with “They are . . . “.  I’ve come to really dislike the royal “they.”  Are we too picky?  Too sensitive?  I don’t think so.  As parents, we have to protect and stand up for our children.  Words are powerful, so we need to be careful how we use them.

By the way, there are over 200 families on a waiting list, wanting to adopt a child with Down syndrome.  If you think these children are not wanted, you are very, very wrong.  There are families waiting to welcome and love a little one with an extra chromosome.

We love you, Matthew, and wouldn’t trade you for the world!