Down syndrome 101

A good high-school friend of mine just contacted me because her sister is about to have a baby.  The baby is going to join the extra-chromosome club, and may also have heart defects which will require surgery.  For them, and in honor of Down Syndrome Awareness Month, this post will address some of the basics.

First and foremost, every child is a cause for celebration – no matter what his or her chromosomes.  What do you say when a baby with Down syndrome is born?  How can you help the family?  The same things you would do for any other family:  Say, “Congratulations!”  Bring a meal or a gift.  Tell them how adorable their new baby is – and leave off any qualifiers.  If you say, “He’s the cutest baby with Down syndrome that I’ve ever seen!” it tells the family that his diagnosis is first on your mind.  Instead, just say, “He is adorable!”  Trust me, the family knows their child has Down syndrome.  What they need to know is that you love them, and their new baby unconditionally – and that to you, the diagnosis is far overshadowed by the miracle of a brand-new beautiful life.

For more information for friends and family, read this other mama’s great post, “What to Say When Your Friend’s Baby has Down syndrome.”

For babies with health or heart problems, the baby’s health is, of course, the only concern.  Nothing else matters until the baby is healthy, so please don’t even think about or mention developmental milestones, therapies, or anything else until the baby is healthy!  Having a child in the hospital undergoing and recovering from major surgery is incredibly taxing and stressful – so ask what would be most helpful for the family.  Bring food, help with siblings, or offer to help with the laundry and household chores that always pile up when we’re distracted by other things.  And, please don’t be offended if the family doesn’t return a phone call or answer a message during this time.  They have a lot going on, and may choose to update friends and family via a phone chain, blog, or other messaging system.

For some basic background information on Down syndrome, start with this post.  But, in case you don’t click on the link, here is the most important part:

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.

Recently, someone told me, “I used to work with a Downs.”  I wanted to say, “Oh, we had an elkhound when I was growing up, and he was stubborn, too. … oh, what?  You were talking about a PERSON?” But, I knew that her intent was not to offend, so I let it go.  But, please avoid referring to people by their diagnosis.  You would never say, “I once knew a cancer,” or “I worked with a diabetes.”  It is especially important for people who are still fighting to be recognized as people in the first place.

For more on language, and why we use it carefully – especially avoiding the “R-word,” click here.

Just remember, we are More Alike than Different


One thought on “Down syndrome 101

  1. Whose sister? Anyone I know? Glad to hear Matthew is feeling better! We’ll be praying for Jesse and his doctors for his procedure this Friday. Love you!

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