Awhile back I forward on a wonderful post by a another mother of a precious little girl named, Rowenna. The blog talked about not referring to children with the diagnosis of Down Syndrome as “Downs Child” or “Down Child” or any other way where the diagnosis is the child and not something the child has.
Simply put, you wouldn’t call a child with chicken pox “Chicken Pox Kid”, an over weight woman as “Obese Woman” or a boy with cerebral palsy “CP boy”. These diagnosis don’t make the individual. The individual HAS the diagnosis.
That being said, after posting this particular blog, I received a comment from a friend of mine from Mabel’s Labels who mentioned a situation she was in where a mom of a child with Down Syndrome was head counting her kids and said “now, where’s my little downsy? oh, there he is”… ARE YOU KIDDING ME?!?!?!?
My friend commented that she was very taken back. She has experience with autism and made the comment that she has never heard anyone use the “hey, where’s my little autistic” phrase.
My biggest frustration with having a child with Down Syndrome is society’s genuine ignorance to these individuals, their capabilities and inturn how to change these perceptions. To have a parent call her child that in a public forum makes me sick to my stomach.
Person first. Diagnosis last. It’s not complicated; just common everyday respect.
This past weekend I had the privilege of meeting another family of a child with Down Syndrome while out celebrating Canada Day in true Club 21 style at the Goderich Canada Day Parade.
Please understand, this family is very supportive and excepting of their child and his diagnosis but still some family members are using inappropriate language. Referring to having “one of those kids” or “Downs kids” etc.
I have two big problems when I find myself in these situations. First, I get so hung up on the language they are using that I can’t hear the actual conversation. Even though I know they are trying to support our kids, their choice of words is so insulting and segregating that it negates all that they are trying to say. Second, I don’t know how to begin to correct their error without insulting them because again I realize in this case there is no ill intent. Give me a blog to vent on, fine. Let me rant on twitter, great. But put me face to face in a situation that’s supposed to be fun and positive and I clam up.
Teaching “People First Language” is great and very important but how do you have that conversation in a face to face situation without insulting the uneducated speaker?
And for all those parents who should know better, I challenge you to choose your words carefully. You never know who may be listening.
Researchers have shown that it takes two positive comments to offset one negative, and some believe the ratio should be 5-to-1 for loved ones, spouses, parents, children, etc.
We seem to have a built-in bias toward negative information and negatives increase disproportionately over positives. That’s why personal insults or criticism hit us harder and stay with us longer.
However, Monday morning I awoke to an avalanche of support. People thanking me for writing my truth. People who were proud, could relate and were relieved to hear they weren’t alone.
Close to two hundred of people read my blog. A huge amount left comments. Words of wisdom, support and thanks.
I was over-whelmed. I was thankful. I was happy with myself for publishing it when I truly wanted to send it to the trash. I was proud.
Then I showed it to a loved one. Someone important in my life. Someone I look up to. Someone I trust. Their reaction was unexpected. It shocked me.
I was lost. I was hurt. All the positives my friends had been saying all day were gone. Dust. Worthless. Irrelevant.
The sad part was that the person didn’t “say” anything. They just said “huh.” and shrugged it off.
Silence. Nothing…. “Huh.”
Silence – it’s a powerful tool. Almost more powerful than a negative in that it leaves the receiver at a complete loss as how to read the reaction.
Silences leaves you second guessing and, because of the “bias towards the negative”, always believing the worst.
People think I am strong. I am not.
I spiraled. I went right back to regretting the post. I went right back to feeling like I never should have walked in that room. I went right back to believing that the whole thing was a mistake.
I went home that night afraid to hear my husband’s thoughts. I knew he had not read it yet. He knew the topic and had seen some of the feedback but he hadn’t actually read it yet. What was he going to think. Would he be silent?
Lucky for me, he is a wonderful support. He was proud and just as positive as the hundreds of others. And, although I still have a knot in my gut stewing the sadness that one response created, somewhere in all of those research documents it must show that a husband’s love can overpower all the uncertainty the world can offer.