“Oh, he’s a Downsy? He’s a Downs kid…a down syndrome baby. Is he a Down syndrome boy? That cute little downs kid! That Down syndrome girl…she just had a Downs baby! Was he abandoned because he’s a downs?”
I know that any parent of a child who’s rocking the extra chromosome is cringing right now.
Seriously, I’ve heard all of these and more! Before we had Lian, I really didn’t give much thought to these phrases and I probably used them a time or two, unthinking, unknowingly. I mean, what’s the big deal, right?
Are we, as parents of children who just happen to be blessed with that minuscule extra chromosome, are we being overly sensitive? Too demanding? Too picky?
Hmmmm….. Let’s just do a little experiment here. Let’s switch Down syndrome with something else.
“Oh, that palsy boy? What a cute, little, palsy baby! Oh, she’s a bifida kiddo. Did you know that Amy has a cancer brother, too? Yeah, she’s a cleft girl.”
No. We would respectfully say, “a little boy who HAS cerebral palsy, a little girl who HAS spinal bifida, Sally has a brother who HAS cancer, she HAS a cleft palate”. None of these things degrade the value of the person at all.
For example, above is a photo of Lian, who has Down syndrome, with his grandfather, who has cerebral palsy. Neither of these two men allow their condition to limit whom God has made them to be.
It’s called “people first” language or terminology. And, to be honest with you, I learned this AFTER we adopted Lian, but it makes SO much sense and I’m very grateful I learned it.
As parents of children who just happen to have special needs, it’s so incredibly important to us that you aren’t counting chromosomes and handing out labels before you first see our child as a person. He’s a person first. A person of value who isn’t defined by a diagnosis, and, in fact, has struggled to overcome, to fight for, and accomplish more in his short life than most of us will in a lifetime.
How we label people matters simply because society has so incredibly devalued the lives of humans who have Down syndrome.
Their lives are demeaned to the point that these tiny persons are routinely aborted, never given the chance to brighten the world with their sweet spirits and sunshine smiles. These children are routinely abandoned in many countries solely because of their chromosome count.
“For God sees not as man sees. Man looks on the outward appearance, but God looks on the heart.” I Samuel 16:7
So, the next time you see a parent of a child who is obviously blessing all around him with his cute wave, his husky boy hello…Just smile and allow his sweet spirit to lift your day.
I don’t want this defining question, “Is he a Downs kid?” to be the first thing Lian hears every time he meets someone new.
I want him to hear, “Wow, great signing, Lian! I hear that new word you’ve been working on for months! I love your smile! What a strong boy you are! Thank you for helping!”
And if you feel like you can’t possibly say anything nice, just move on. Please!
Because who he is isn’t defined by a chromosome. If you could just look past the label, you’d see a child with an enormous heart, sensitive to those who are hurting, ready to dole out hugs and light up the room with his smile. You’d see a little boy who reminds us to pray when we forget, who raises his hands to God in worship service when I’m too self-conscious to, who insists on praying for someone who is injured or sick. You’d see a little person who speaks to God as if they are best friends, who commands the rain to stop with all the audacity of being a beloved son of the King, who makes us laugh all day long.
He, and all of our beautiful children who just happen to have Down Syndrome…they are infinitely more than the label.
So don’t introduce them with the label first.