Thursday, August 14, 2014

Sensitive.

Having a child with a disability makes you a little bit tougher, but also a bit more sensitive.

The comparison game can steal joy from a special needs mama, and the comparison game is toughest when comparing your child to others with the same disability.  When Ellie falls behind her typically developing peers, I may be sad for her briefly, but I get over it and she hasn't seemed bothered yet.

But when I try to compare Ellie to other kids with Down syndrome, the results are never good.  Not because she fares poorly (she doesn't) but because there is always someone better at whatever it is I'm comparing.

It starts with…
"That kid with Down syndrome is healthier than my kid."
"That kid is sitting first."

It progresses...
"Oh, that kid with Down syndrome will go on a ride at the fair without a tantrum."
"Oh, that kid with Down syndrome can go up and down stairs easily."
"That kid can walk across the beam."

Many of us in the Down syndrome community try to have some sensitivity when we brag about our kids, knowing that every milestone comes with a lot of hard work, and many of our friends' kids are still working hard to achieve whatever the milestone may be.



I also really don't notice Down syndrome as much as I used to, which may seem odd, given that Ellie's features identifying her extra chromosome are more obvious as she ages.

All of this came into play recently.

I was alone in an elevator with a certain child in a stroller who was being loud.  And uncooperative.

Yep, it was Ellie.

Another mom and grandma, accompanied by a child in a stroller, step onto the elevator.  As we were in Puerto Rico, I told Ellie, "dile hola."  (Say hi.)

Ellie said, "NO!" because she is three and was being uncooperative.

"Does she speak?" asked the mom.

"She never shuts up, unless I tell her what to say!" I laughed.

"Oh, my daughter doesn't have many words."

And as the mom made a weird face and then got out of the elevator in the lobby with her girl, I realized that the girl in the stroller also had Down syndrome and I was a total jerk.

My answer was true.  It was the answer I would give to almost anyone.  But it's a jerk answer to a mom whose child doesn't speak.

How do I know?  Because I've been hurt unintentionally by "Oh, once she starts walking you'll be wishing she took longer" and other comments.

And I probably hurt someone, all because I wasn't paying attention.

So what's the point of sharing this?

I need to slow down and pay attention.  What I said was true, but that didn't make it the best approach.  Maybe, "Yes, she talks."  Because complaining about what your kid does when another kid is working hard to do the same thing is insensitive.  And I know better.
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4 comments:

  1. This is coming directly from a mom of a kid with Down syndrome who does not talk........yes, it hurts to hear that particular phrase "My kid never shuts up" or "I wish my kid had a mute button" or something along those lines. BUT for me it doesn't make me upset with you. It makes me more sad about the situation that my son faces. There is no rhyme or reason why one child talks and another does not. I don't think people who say those phrases, usually quite unknowingly and without malice, are jerks at all. But I think you're awesome for thinking about it in a different way!

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  2. I've played the comparison game, and I've had fleeting mama envy of those excelling in areas Grace isn't. But along with the envy, I've had hope. If your child has achieved that, maybe mine can too. Don't beat yourself up. Comparison is normal. Hope for your child to excel in all ways is normal. Inability to control how others will take your words is normal.

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  3. I love that you are aware of this. My son is very delayed. He has down syndrome and autism and I definitely feel the comparison sting more when I compare him to kids with down syndrome. And I don't think parents are doing anything intentionally mean when they brag. Of course we want to brag about our kids...we are darn proud of their accomplishments! At the park the other day we met a boy with down syndrome who was much older than my son and he was non verbal. His Grandpa pointed out to his mom that he heard my son saying "mama" and he wanted to know his Grandson wasn't talking. I came home and told my husband "Someone was jealous of Lukey today!" ha. All that to say...I think it's very sweet of you that you are being aware. It's a good reminder for all of us!!

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  4. Unfortunately, we have no idea of knowing whether or not a child is walking or talking or running when we are in certain situations. I think that the mom probably didn't take your comment as harshly as you think it sounded. I don't mind it as bad from a parent that has a child with Ds as I do from people with typical kids. Don't rattle off how easy your child was to potty train or how your 2 year old is using complete sentences and riding a regular size bike with training wheels. That to me is more insensitive.

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