Down syndrome….did you know?

I’ve been chewing on this post for a while now…..

Not really sure how to go about addressing a few things that are very much a part of our life now…

Life with a little one with Down syndrome….

But if I were in your shoes, I would want to know….

So I’m going to share….

I’m sure I won’t remember all the things that have run through my mind but I’ll do my best.  Might I offend some of you?  Maybe, but that is not my intention.  It’s to educate.  So that you’ll know concerning our sweet Neely and so you’ll know as you interact with other people with Down syndrome.

First things first….Neely has Down syndrome.  It is named after Dr. John Langdon Down who first described a set of common characteristics back in the 1800’s.

It is not “Down’s syndrome”, although in some countries I think they use that term.  Here, we say Down syndrome.  Have I used that terminology in the past?  Yep…even here on our blog.  But now I know. 🙂

Neely is not a “Downs baby“.  When Neely was in the NICU, I heard that term over and over and didn’t really think anything of it.  I even used it myself. But in the short time that Neely has been our precious little girl, I have learned that the fact that Neely has Down syndrome does not define her.  It is not who she is.  She is a little girl, who happens to have Down syndrome.

In the beginning, people often said “She doesn’t even LOOK like she has Down syndrome!

Hmmm……she DOES have Down syndrome, she DOES look like she has Down syndrome and that is A-OK with me!!!  She is beautiful!!!  Just like all the other precious faces I see of the children and adults that have Down syndrome.  Those are gorgeous faces to me!  They remind me of my Neely!  But you know what else?  Some days she reminds me of Ellie….sometimes she looks at me and I would swear it is Ethan looking back at me….when she’s grumpy, she reminds me of her Daddy (I Love You Bryan!)….she looks like all of us at different times….and I love it! Nothing wrong with looking like you have Down syndrome!

The “r-word” is offensive to me as the mother of a child with an intellectual disability.  It should be offense to you as a human being.  Has the word always been a “bad” word?  No…for years and years it was used as a legitimate medical diagnosis.

Then people started using it as an insult….as a put down.  Adults use it…parents allow their children to use it….you know how you take the power out of the “r-word”…stop using it.

When we had Neely, we heard CONGRATULATIONS from almost every person we knew!  Our friends and family were so excited for us, as we welcomed our newest addition.

Were some of you probably afraid for us?  Probably.

Were some of you probably unsure of what her diagnosis meant?  Probably.

Did some of you feel sorry for us? Probably.

If you know of someone, who has given birth to a baby with Down syndrome or received a prenatal diagnosis….don’t say “I’m sorry”.  In most cases, the parents are unsure, afraid, grieving but they are blessed to have a child.  They may be overwhelmed at that very moment…but they want to know that you join them in being excited about the new addition to their family!

Don’t assume…

Don’t assume that a Down syndrome diagnosis is due to ANYTHING that the mother did or did not do prior to their baby’s birth.  Simply untrue….

Don’t assume that all babies born with Down syndrome are born to mothers of “advanced maternal age”…don’t you love that PC term!  🙂 Don’t be so surprised when you see a young mom with a child with Down syndrome! Young women typically have more babies, therefore the percentage is lower.  Women of AMA typically have less children, therefore the percentage is higher.  Certainly we have an increased chance…but know too that it is not impossible for young moms to give birth to a child with Down syndrome.

Don’t assume that all babies, children and adults with Down syndrome are happy, happy, happy all the time!  I assure you that little Miss Neely can be quite unhappy!  I read something that a parent wrote about the emotions of someone who has Down syndrome.  She said that when they are happy they are extremely happy!  And when they are upset, mad, etc. it’s often at the extreme too! Our little ones experience a wide range of emotions just like your little ones do.

The last one, I’ll mention, I’m kind of torn about…..people comment on this all the time and I don’t want to hurt anyone’s feelings…just want to share…

Neely is small for her age.  She was born at a typical birth weight but has continued to grow very slowly.  This is very often the case with a child that has Down syndrome.  In the beginning, we struggled to get Neely to eat well and to gain weight.

It really made me want to cry when people would comment on how BIG she was getting when I knew she was barely gaining or even losing weight. I feel better about her size now because she is gaining a little at a time.  I know that some people don’t see her everyday so maybe it appears she is getting bigger by leaps and bounds.

Maybe what I mean to say is to be sensitive to things that parents are struggling with.

If feeding and weight gain is an issue, that is probably not the best topic to point out in their child.

If a parent is struggling with the fact that their child is not meeting certain developmental milestones, it’s probably not the best time to share your infinite wisdom about how quickly your child rolled over, sat up, crawled etc.

We are great with the way God has made our sweet Neely.  We know that she will do things in her own time and we are not going to rush her…just help her be all that we know she can be.

Do you have a question?  Maybe wonder if something is appropriate or not?  I would love to answer any questions you might have.

Please know that having a child with Down syndrome is new to us too!  We are learning and educating ourselves as we go.  We want to help you navigate the journey as our friends and family.

We Love You! And are so thankful that you love our little Neely Jane!

Here’s a sweet video of her working on her babbling! Enjoy!

Until next time,

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