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."
"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.