Kim has left a new comment on your post "A Mixed Bag":
Lisa, what would be the best way for that mom to handle things? I make similar small talk with moms regularly, and I hate to think that I'd be causing a mom pain because her baby wasn't doing what I asked about yet. If I run into a mom of a special needs child, what should I say when she explains that her baby is delayed? How could I offer support and encouragement without sounding condescending or full of pity?
Kim, this is a good question, and I appreciate your asking.
And the thing is, I don't have an answer. The small talk, the asking if he's doing this or that? That doesn't bother me at all. What caused me almost physical pain was the "Ohhhh . . ." response, and even more, the sudden silence from the other moms standing around, as soon as they heard "Down syndrome." (Now, granted, I admit that I am likely hyper-sensitive to these things, and some of this may be nothing more than my own perception because I am on high alert for people's responses to Finn and his diagnosis).
The truth is, before I had a child with Ds, I would have totally been one of those moms. I know I would have. I know I would have said, "Ohhhh . . ." and then not known what to say.
So it's not that I think their reaction was wrong or anything. I guess, now that I'm on the other side of this thing - now I'm the parent of a child with Ds, and not just a bystander - I just see how people in general, society if you will, views Down syndrome as something to feel bad about. And how can I be mad at those people since I was one of them? I just wish the world were different.
I know that in a lot of ways I totally need to get over myself. I've become so suspicious of people and what they're thinking. Just last night, Joey was in a play at school and I went to see it with my sister-in-law and Finn. And this whole group of people across the aisle from us were ooohhing and ahhing over Finn's extraordinary adorableness (okay, my words), and they jokingly held out their arms and said, "Pass him over here!" And instead of feeling good about it, all I could think to myself was, "Yeah, I wonder if you'd still be going all gaga over him if I told you that he has Down syndrome."
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7 comments:
I find that sometimes people make over Jude a little more than they do Simon at times, about how cute he is, and then I wonder if they are just overcompensating or something?
The truth is, I think people just can't win with me. If they didn't say much of anything, that would be wrong. And if they said something, but it was condescending or misinformed, that would be wrong, too.
I have found that it's really, really important to try and develop as thick a skin as possible, educate when you have the opportunity and can muster the courage and will to do so, and try to be gracious with people and assume that they mean well...because mostly I think they do.
I usually am very matter-of-fact but upbeat about Jude's Down syndrome, and people follow suit mostly.
I'm not one to preach about "person first language" although it does bother me when people say "He's Down syndrome" or "he's a down syndrome baby". He isn't Down syndrome. He HAS Down syndrome. To my ears, there is a big difference, though I know other people might think it's nit-picky.
For the most part, I just want Jude treated like a any other kid. I don't want people all ooohing and aaaahing over him just to make me feel better. It's great when people ask questions or show interest as long as they keep the pity at bay. And then they should ask questions about the other kids. And then I should ask them some questions about their kids.
You know, just like normal people:)
I can relate to the "hyper-sensitive" mom (me) who always wondered what someone's motive was for complimenting John Michael. But I think I'm getting over that. Another thing you said about people wanting to hold Finn... some 8th grade girls last week were oohing and aahing over John Michael and I wondered if they would babysit him or think he was so cute if they "knew". But then maybe they do "know" and they're just sweet and have no ill thoughts. I try to look at it as if it's our job to stay positive and help change our culture. It's a big task, but if we dont', who will?
What a great question, though it really is hard to answer. I would recommend they just ask questions. I have had the best conversations when people seemed genuinely interested in learning more about my daughter. I had one lady at church just start asking me all kinds of questions about intervention, therapy, what they are capable of these days etc. We really became close because she genuinely wanted to know!
I learned a long time ago that I could NEVER interpret a person's motives correctly (not just in relation to my daughter but in anything), therefore I always try assume they are pure until PROVEN otherwise. Even if they are impure, I don't want to waste my time consumed by something soo not worth it!
I think that the hypersensitivity will fade in time. I think it probably took me about 2 - 3 years, but now I don't really care what people say or act unless they are being really rude (and so far that hasn't happened yet).
When people are super nice or interested in Georgia and keeping talking to her or us about her, I find that I usually think something like, "They must know someone or have someone in their family who has DS." I dunno if it's true or not, but that's what I think. Or..that they are nurses or Sp.Ed. teachers.
I can't speak to the experience of having a "special needs" child. But I know that moms of "regular needs" children often have the same doubts and concerns about what strangers are really thinking when reacting to their babies.
How much of it is about the child and how much of it is about ourselves and our own self doubts?
You touched on that- your sensitivity and how maybe you are just taking it all too personally. That might be something to explore further. I think it's an astute observation. It's seeing the common denominator and going from there.
It's kind of one of the classic struggles of life. Separating the personal struggles from the perceived struggles. Finding a way to set aside our own issues, paranoia, etc... and find powerful and respectful ways of being heard.
I think those women would be asking for Finn even more if they knew he had Down syndrome!!! I have found that my daughter has brought out the best in people, and many people have surprised me with their genuine interest in my adorable one! I think that as a society... people have been indoctrinated with fear about down syndrome, especially with all the pre-natal testing. And then when people encounter children with the extra ...they are touched by their innocence. Enjoy the compliments!
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