I've had one thing on my mind since BlogHer, and it's not BRITNEY SPEARS (if you're wondering what the heck I'm talking about, you clearly didn't read my BlogHer opus yesterday). I'm talking about a question that any mom of a kid with special needs has to grapple with at some point:
How do I want people to react when they hear that I have a kid with disabilities?
You'd think that having been Max's mom for six and a half years now, I would have come to terms with how I'd like people to respond. I hadn't, but then I had to contend with the conversation so many times in a row at the BlogHer conference that it really got me thinking (I've been known to do that on occasion).
When I talked with other mom bloggers, sometimes it came up that Max has special needs/cerebral palsy. Or I brought it up. Either way, the typical response was for the other person to look at me with mournful eyes and said, "I'm sorry."
Now, granted, this wouldn't be half as bad if they said, "I am sorry, but he is lucky to have a babe of a mom like yourself, who does your hair?" or "I am sorry, you deserve a $500 gift certificate to a spa, I just happen to have one here in my purse, it's yours!"
No, more often than not I'd get The Sympathy Stare.
It bothers me because, though I understand that people mean well and some don't know how to respond, they're treating the fact that Max has special needs like it's some tragedy. It bothers me because it instantly creates a divide between me and the mom I'm talking with. Her: Mom of typical kid. Me: Not. And then, suddenly, I am feeling just a little sorry for myself. And I don't want to. Why should I? Max is doing amazingly well. And, I'm a babe.
I have decided that the reaction I like best is NO reaction. No sympathy. No "I'm sorry." No sad eyes. Let's just keep talking. You can definitely ask how Max is doing. You can definitely join me in musing over the fact that, yes, it's bizarre that a baby had a stroke. You can definitely comment on how handsome he is.
And you can definitely, of course, acknowledge that I'm a babe.
Photo by Southgater
I usually get the "horrified" stare when I tell strangers about my life circumstances! It's why I don't do a lot of "sharing" with strangers, doncha know!
ReplyDeleteWhat strangers can't figure out is that we're just fine. Really. Despite "it all."
Our friends and family know that, though. No sympathy from them, not even on a rough day. I will take babysitting from them, and thank heaven they're pretty good about ponying that up--I'd never get my shopping done otherwise!
That's why I've stopped telling people. If they don't already know, to some degree, then they probably don't need to know. I used to go into all of it. Now I just say I have 2 kids and leave it at that. I can't handle the sympathy. I did wonder what people I knew in high school would think when I posted pics of the kids on facebook, but then I stopped caring. Because my kids are totally cute.
ReplyDeleteAs a mom of two "typical" kids (who probably told you I was sorry over the weekend), I don't think we mean that we're sorry that you have the awesome kid you have, I think we're sorry because we know how much more work it must be, and how you must worry about the present and the future, and we feel like we need to acknowledge that.
ReplyDeleteSaying, "Wow, I'm sorry," seems a little more gentle than saying, "That must be a lot of WORK." IEP meetings, advocating, etc., all that stuff takes time and energy that parents of typical kids don't have to expend.
Having said that, though, I'm going to be more mindful of that in the future, and I'm sorry if I offended you at BlogHer.
Hugs,
Amy
thanks so much for you incredible comment. It means the world to me. I don't have a special needs kid but too often, in my book at least, I get that "poor you" look when I say that I am divorced. Suddenly, I am contagious and my kid is "troubled". I would prefer as you say, just tell me " good for you and by the way you are totally hot!"
ReplyDeletelots of love
Ellen, I think you've been reading my mind again! I was just thinking about that yesterday. We get the "sympathy stare" a lot when we go to therapy. Whenever someone tells me that they're so sorry about Daniel, I'm taken aback. He is an amazing little boy, and I love him neither no more nor no less because of his stroke. I've said countless times that the best thing people can do for him is to treat him like everyone else. I guess the same applies to us, too.
ReplyDeletethank you for saying what you did - I too have a son with special needs. He is 4 and completely non-verbal and truly one of the lights of my life. I sometimes get the same reaction and I think to myself - my kid is WAY better behaved than most "typical" kids and is way sweeter and kinder. so why are YOU sorry? i wouldn't trade my life with him for anything.
ReplyDeleteThis is a great blog and I look forward to reading more. what a joy it is to read about such a handsome kid! THANKS! Kristen P.
I'm with you--don't give me any pity. I have a good life and am happy with it. The fact that i have a kid with a disability doesn't change that in the slightest. And that's really it--I dont' mind empathy--it's pity I hate.
ReplyDeleteThanks Ellen, you gave me a much needed laugh (the gift certificate in the purse) this morning when we are having a horrid heat wave VERY not typical (love that word) for our climate. One thing I have learned at my point is really some of the typical (there it is again) kids have MANY other problems later (drugs, drinking, etc.). Its a myth to think you got it easy just because you have a child without special needs! Parenting is a tough job, we just have different issues. But yes I wish people would learn to handle meeting people with special needs. Its actually all around you.
ReplyDeleteI think that most often people are uncomfortable and unsure what to say. I don't usually get too many comments but we do get stares. For me it is a badge of honor, I know she's different and unless you have a s.n. child, you won't understand. I don't really care what people think but you better not be rude and stare or not include her in something! So many people are not BLESSED to be in the life of a s.n. child!
ReplyDeleteAnonymous #2/ Kristen P. brings up an excellent point. I don't throw a pity party for a mother with a "typically developing" child when she has to chase her running toddler through the mall. "Oh, you poor thing - it must be SO hard having a child who can run that fast!" Or, "Oh, I'm so sorry that your child is able to scream his lungs out in the middle of the grocery store - raising a child who is able to do so much must be SO difficult. However do you do it?"
ReplyDeleteRaising a child with special needs is not terrible or a burden. It's just a slightly different way of life, is all.
I love reading your posts, because I have very similar thoughts from day-to-day, I'm just not as good at putting them into words as you are! I swear I was just thinking about this yesterday, as I was reading your post about BlogHer, and what it must be like to be there as a mom with a special needs child. What a different perspective. I hope to go someday, not as a "blogger" or anything, but just to experience it myself. And maybe meet you, too. Oh, and to the topic of your post, sometimes I don't know what I want people to do or say. I guess it depends on my mood, and unfortunately, no one wins there!
ReplyDeleteLast month, one of my husband's childhood friends showed up at our door. They hadn't seen each other since they were about 9, so there was a lot of catching up to do. When I asked about his family, he hesitated. Then he explained that one of his sons had Down Syndrome. That hesitation went away in an instant when we calmly asked how he was doing, was he healthy (since many Downs patients have heart problems), and would we get to meet him. I know he was expecting the sympathy look, and when all he got was honest interest in his family, he opened up and bragged on his son and enjoyed talking about him.
ReplyDeleteI'm not a special needs mom, and I have been guilty of the sympathy stare. But I'm glad that I've learned to put my own sadness that children ever have to be sick or disabled aside.
I think people don't know what to say... and constantly put their foot in their mouths. For instance, a friend who's daughter has a leukodystrophy disorder and is very involved-when we see them at the hospital (where I work), we chat about M. is doing, what new things, how's school goin, etc. And when her mom asks about my family, I'll say 'oh T.'s motoring around and getting into everything these days' and then feel like an absolute heel-presuming she'd be elated if her M. could do the same. In some ways it seems our parenting experiences are so vastly different, tho there are some similarities, ie: the way we all love our kids so intensely. The truth is, we'll all one car accident or closed head injury away from having more in common.
ReplyDeleteWhen I diagnose a baby's hearing loss, it hardly seems inappropriate to say 'I'm sorry it isn't different news', nor would it seem appropriate to say 'congratulations, your baby has a severe hearing impairment!'. I think you might agree you would be taken aback if upon sharing with someone that your child has special needs, they said-'oh that's great!'.
There is no right answer, no right way, and much of it seems that we all just do the best we can w/ what we know.
Honestly, I don't think people are trying to be insensitive, I think they're truly uncomfortable and sadly, it often comes at your expense. Maybe that's what they're sorry about.... Tiresome yes, but reality too. Yet another opportunity to educate the public, but that too, must get tiresome. Anyway, thanks for talking about it. Best, Leah
You'll always be a babe to me even if you are older : ).
ReplyDeleteFunny, you said this. I had someone on another board tell me "OMG I am so sorry" today..........really?
ReplyDeleteHaving 3 kids all with special needs, I can empathise with you when you get the standard "I'm sorry, or god how awful, how do you cope??" lines. To me these are my children, all of whom I love dearly and yes... they are amazingly good looking too! I just reply when people say "I'm sorry" with a quick "don't be, I'm not!"
ReplyDeleteYour Max is a handsome dude alright! :D
I am so glad we have all agreed on one thing: that I am a babe. Oh, and it's incredibly heartening to know that many of you have also dealt with The Sympathy Stare.
ReplyDeleteAmy, thanks for swinging by again. No need to apologize, none whatsoever—I don't think you were a mom who said "I'm sorry" and even if you had, like I said, I know people mean well. Anonymous #2, you speak the truth.
Anonymous #1, I know who you are! You're Britney Spears! Welcome to my blog!
Pity I can live without. I can't stand the sympathy apologies and stares one stinkin' bit. To me it goes hand in hand with, 'He looks so happy.' (Do you get that one too?) Well, why in the heck wouldn't he be happy? For crying out loud, he's a four year old kid and has a babe for a mom. I'm sorry(hehe). I couldn't resist. Okay, I'm leaving...
ReplyDeleteVery well said. I really do think people just have no idea what to say and they feel that they have to say something. They don't realize that there really aren't any words that are necessary.
ReplyDeleteJust recently I received this comment: "I am so sorry about your daughter, she is adorable". I could not help but wonder what she was sorry about. Is it a burden to have such an adorable child, knowing all others will pale in comparison? Well, it is hard, but somehow I have managed to cope. After all, she takes after her hot mama!
I don't really volunteer the information. I'm more likely to tell people that I have four boys - and guess what they say?
ReplyDeleteThe comment I have been getting a lot lately is when people meet Moo, they tell me how "cute" he is. He is "cute" but he is also getting a big head hearing it so much.
ps - you are a hot babe
thanks for making me laugh! you're a breath of fresh air! xxx
ReplyDelete