From Cape Cod to Alaska and still on Swings

Exhausted but home in snow-covered Anchorage. (Three feet since we left!)

Elias cleaned Concourse L of the Chicago airport with his hands and knees during our four hour layover and then slept for almost all of the seven hour flight home.

"These floors are filthy," a woman pronounced, as if I didn't notice.

The other toddlers ran to get their wiggles out. Elias crawled.

And I'm sorry but after scrubbing my arms from finger tip to elbow for two minutes in order to rest my hands on Elias's tiny head, after taping a sign on our front door asking guests to please wash their hands when they arrive, after avoiding all crowds from day cares to shopping centers to birthday parties, I know about protecting my child from germs.

I've been there.

And now, quite frankly, I don't care if his hands get dirty as he revels in his exploration of the airport, crawling under seats (tunnel!!!) and making weary travelers smile.

"These floors are filthy!" This is not one of the Mother at the Swings (as Vicki Forman dubbed them), prompted to speak from a place of curiosity and compassion. I don't have a catchy name for her yet but she is the same one who said to me at a  conference as Elias scooted past her feet, "Aren't your worried that he's not going to read if he doesn't crawl?" Or the one who stood behind me in Costco and said in a snotty tone, "What's wrong with your child's eyes?" These are one-ups-women who feel better when they are putting someone else down, even if the insult is veiled by mock interest or courtesy.

You know who I mean, these women are born in junior high and become more cunning with age.

And sometimes the well-intentioned commenters, the "Mothers at the Swings", get rebuked by us special needs mothers because we've had one too many encounters with the likes of these, for lack of a better term, One-Ups Mothers.

That Girl commented on my last post that sometimes people's innocent comments make her not want to go out. I can relate. If I hear one more person say to me-- "Oh don't worry he'll walk soon, they all do."--I may avoid conversations with  people all together because the fact is not everyone walks and if over twenty doctors, therapists, and specialists can't make predictions then I don't think someone can in the time it takes an elevator to reach the fifth floor.

That Girl writes:

It's probably the only thing they can think to say but the disconnect "He has     half a heart" "Dont worry, he'll get bigger" makes me want to stay home           forever. Alas, Jake adores the park swings.What do you say to yourself when people make these kind of remarks about Elias? And how should our response change as they get old enough to understand these stranger-conversations?

I've gotten very good at smiling while fuming on the inside. Some days these eternal optimists are easier to shrug off than others. As Kyla writes in her comment: "Blind positivity can be like a slap in the face..." Some days, I want to shout back: "And what if he doesn't walk, what then? Will you still accept us if we don't fit into your picture of what is OK?"

For me the hurt is twofold: the comment can disregard our reality--all the therapy and medical appointments, the fears and worries--that makes our parenting different from theirs and it can imply that this difference, in the long term, is not acceptable.

And yet I know that this is never the intention when someone says, "He's going to be just fine."  They just want to make things better. They want to protect us and our children, and subconsciously, they want to protect themselves. It's down right hard to see children struggle, hard to realize that babies get hurt, hard to accept that we aren't all the same.

(And yes, there are times when I want and need to hear that, "He's going to be just fine" but from people who know his history, his strengths, his personality and in their words "fine" includes all of what makes him uniquely Elias.)

Despite the unanticipated sting of strangers words we can't hide in our houses. Can't avoid the swings. As Kyla writes at the end of her comment:

The best way to help people understand is to be out there at the swings      educating them by your presence. Maybe if there are enough of us out there at the swings, we can help those Mothers at the Swings to catch a glimpse of what makes our kids different, and that it is okay to be different. Maybe then they won't need to pretend that "He'll get bigger." or "She'll talk soon!" or "He'll be   walking in no time and then you'll wish he wasn't!". If we aren't out there         helping them understand, they never will.

I'm glad to be a part of this conversation and I think it needs to continue. We need to talk about the hurt of innocent words and the human need for happy endings.

And that sometimes those happy endings include a small blind prince, with half a heart, who still crawls and a smart nonverbal princess who can not stand but talks beautifully with her hands.

It may seem impossible but somehow it all works.

Comments

[Katy]

The thoughts that you (and other moms of special needs' kids) share on your blogs helps moms like me to be Moms At The Swings (in a good way, I hope) rather than Snarky Moms.
Thank you.

[Christy]

Ooh, I like Snarky Moms for a title. Thanks Katy, the fact that you care to read and understand makes you the type of mom I would want to talk to at the swings. So thank you!

[Kyla]

I love this post, Christy. It was perfect. You captured so much of the experience with your words. I can't even think of anything to add at the moment! Its like you read my mind, not just with the quotes *lol*, but the way you explained them out. It was really excellent.

[DeannaBanana]

Christy, I find myself guilty of saying things that I intend to help and/or offer my unending support and obviously they dont, always. Thanks for the lesson! I do believe, however, that "Elias is going to be juft fine" is a gross inaccuracy. If you ask me, Elias is ALREADY more than JUST FINE. He is a unique, handsome, loving, caring, boisterous, curious little man. Isn't that more than can be said about a lot of people? I hope that above all you are able to relish in all things Elias and noone puts too too much on you with regards to what he 'should' be doing at this stage of the game. Elias' "disabilities" have given him the distinct ability to love more completely, more purely than almost everyone else. I believe that this is how God blesses the babies he deems extra special.

p.s. My Christmas wish (for however long it is needed) is still that Elias will walk, for both your sake and his.

[That Girl]

Thanks Christy (and Kyla) for reminding me that most of the time it comes from a good place.
When you meet up with one too many snarky moms, especially snarky-diguised-as-nice, you tend to brush off all the Swing Moms.
I actually got into an arguement (!) with a woman who insisted that my son would be fine (and get bigger) even after I explained to her that he could be 2 feet tall forever and as long as he lives Im cool with that - I really dont care and neither should anyone else. She kept raising her voice higher and higher trying to insist that he would be fine in some kind of insane denial. It's the kind of thing that does make you close off and not want to engage with anyone.
We also need a catagory for the take-your-breath-away insensitive comments (what's wrong with your son's eyes!!!) or the woman who told me that maybe my son doesnt sleep "because he knows [he's going to die soon] and he's trying to get it all in now."
Those people go beyond snarky into you-should-have-to-wear-a-muzzle-in-public. That's kind of a bulky tagline tho.
And I mind less now than I will when Face is old enough to understand what they are saying and be affected by it. Because they do not want to commit the sin of hurting my child's feelings. It would be so on. I cant even think about it without getting furious. Even though I know getting furious would upset him more.
I would love to know how you deal/will deal with it then. Please tell me or I forsee a lot of judge-ordered anger-management classes in my future.

[mary]

I am so loving all this discussion. I had read the Mother at the Swings article even before you'd referenced it and thought it was amazing. Thanks to all of you for provoking discussion and thought.

And my apologies if my comments have ever come across in the "I'm sure he'll be fine" mindless vein. Eek. Like Deanna says--he is so wonderful now, what is this "going to be" stuff?

Reading about your family and seeing that gorgeous grin is always so good and joyful. Even when the post is introspective or worried. That a parent can put such passion and thought into the raising of a child is such a hopeful thing.

Thank you for writing, Christy.

[Kyla]

ThatGirl: WOWZER! That's like Way-Out-of-Line-Mother. I cannot believe she ARGUED with you. And the not sleeping comment????? Perhaps we could dub her "Mother Who You Jumped at the Swings".

We're not at the point where KayTar understands comments (the kind and the not-so-kind). I would hope that when we get there, I will have the strength to smile and say "She's perfect the way she is." and end the conversation at that. Or "We're thankful for the now, we don't worry much about the 'going to be'." And then I'll give KayTar a little wink and a secret smile to let her know that we understand even if they can't. I hope.

But if someone said what they said to you about the sleep? Oh man. I might be tempted to punch them, and then smile and wink at her, in a way that says "Mama's got your back baby girl."

[Ginny]

Maybe we need to redefine "fine." And "normal." Who are any of us to say what normal and fine are? Who among us lives up to our potential - our FULL potential - anyway? I know I don't, though I strive to (not always very hard). I agree with DeannaBanana above, Elias is already fine. That anyone would take issue with his eyes, with his crawling, with anything about him, infuriates me. He is beautiful as he is. No, he may not be what many people think a child should be - but maybe he is. How intolerant we all are. Elias has much to teach us.

[Robbin]

Feel sorry for people who measure the value of a life or what is success by such narrow criteria. Their life may turn out to be that much poorer and missing in richness.

[JenniferB]

Christy -- you touched the core of it again, wonderful. And I completely agree with the knowledge that Elias is perfect NOW, not in a random, unpredictable future. I can't even imagine a polite response to some of the comments that have been mentioned that were said to you and others. People are so blindly wrapped up in their own little version of a perfect world that there is no thought or consideration to how reasonable people should communicate with each other. I'm so glad you have the support that you do!

[Sara]

Exactly. I'm sure I've told this story before - one memory that still is strong though it happened years ago happened a few months after Toby's surgery - during his first trip to the local children's museum where he was able to walk by HIMSELF! all around the museum using his walker. It was the first time we didn't have to carry him or move him to get around. During the same visit, we had a One-Ups (Grandmother) quip "what's wrong with him?" while Toby was boogeying do a disco lights/video thing. While I wanted to quip "nothing is wrong with his EARS you old bat" I didn't. An hour later, a grandpa volunteer at the carousel smiled at Toby, looked at us, and said with a huge light in his eyes "Oh, I always have a special place in my heart for kids who have to work a little harder". His comment brought tears to my eyes - he got it - he had said the most gentle loving thing without ever having met us before.

[Christy]

That Girl: I too am terrified for when Elias understands more and we meet the need-a-muzzle-mamas (Holy cow! what a comment!). And I'm also worried about the innocent questions of children that will come at an age when he cares about how he is perceived by his peers. I too hope that we'll have a secret language, like Kyla, to help us shrug it all off and that Elias (and I) will find strength in the fact that as DeannaBanana, Mary, JeniferB, and Ginny all said he is fine, he is extraordinary in so many ways.

Also I will keep learning from Sara and other parents who are a few years ahead of me on this road.

And for the record I have never felt that any comments here on my blog undermine our reality by projecting hope for I do still desperately hope that Elias learns to walk, that his vision improves, his voice becomes stronger, and he grows. Along with this hope is grief over what may never be and under this grief, if I'm allowed to express it, which I feel free to do here, is acceptance for what is.

And yes Robbin, Ginny, we as a society need to redefine what is successful. What is fine.

[tracey]

Hopefully as you continue to field these remarks you will be able to easily tell the difference between those that don't even care to understand (low them off) and those that really only have good intentions (be easier on them). Because you're right, people like to help solve other peoples problems and sometimes what feels patronizing can really be a comment made with the best intentions. Albeit not always the ideal statements.

My sister was born with only one hand and has faced these comments her whole life so she knows of what you speak, not because she's a mother to a child that is "different" but because she WAS the child that was different. No one could ever comment to slove her problem; it was more a matter of being stared at with questions like, "what happened to you?" instead of "It'll grow bigger." I'm not sure which is worse.

When I read posts like this I am pained for what those that are different in any way must deal with daily. I like Kyla's thoughts on educating others. Some of us are just born to teach, whether we like it or not.

Kudos to all of you moms for being so honest and allowing for these kinds of discussions. It's vital for all mothers and children combined. I am inspired.

[Lisse]

I tried to post this yesterday and I think it got lost somehow, so if you find it in some other random place, I apologize.

Christy, I have been captivated by your story. I'm a little in awe of you and Elias.

I guess I'm one of those mothers at the swings and if I were to examine my motivations in a generic sort of way, I might find curiosity, a desire to demonstrate acceptance (although why you would need that from me is another question), and reassurance (again, that shouldn't be your responsibility, although sometimes we try to make it so).

I had always thought that "snarky" contained an element of meanness. I hope that most of us tread lightly on the paths of our unknowns, but I guess that's not always true.

As for the woman who made the comment about That Girl's child sleeping - I'd call that agressively stupid.

[laura]

i usually will look someone like that square in the eye and say one of the following as applicable:

he IS fine!

there's nothing wrong with him, why do you ask?

i understand curiosity and accept it as natural and okay but i sometimes grow weary of educating and explainging to the average folk on the street, at the park or at the airport because all i want to do is just enjoy spending time with my little boy and experience his unhibited joy that all little boys his age have when they play.

i promise you the airport ladies cluck their rongues when the "normal" munchkins crawl around on the filthy floor too as i have been lectured for one or two of my older kids doing the same thing. you'd think concourse L would be shining after our kids played there!
glad to see you are home safe and sound.

[Sara]

For what it's worth...Toby has hit the age where he takes in what others say, and questions why he's different. So far, we're mucking our way along, but what seems to work is a combination of giving him time to talk about when it's hard (and not fair), giving him words to reply to others' questions (mostly from other kids - who have natural curiosity), and helping deflect the "stupids" out there. No, not by any stretch of the imagination - the At Swings parents are hardly by definition all (or even mostly) in my "stupids" category (though that one for That Girl - yes). We do a lot of 1-2 sentence "CP 101" for folks - and Toby is quite good now at saying things like "These are my canes (or this is my walker), they help me walk". He also talks about his "several palsy" and how he was born early and needs some help walking. At the same time, he knows that everyone needs help with something - my glasses are so I can see, his sister has to work hard at math, etc.

I so treasure folks ahead of me on the road out there in blog-world, and folks behind me on the road too - you forget a lot of the details as kids age (and it happens SO fast). Parts get harder as they get bigger (Toby's nearly 7 - and still crawls b/c it's easy...he's mighty big and folks really don't know how to take a crawling 6.75 year old - but you know, he charms their socks off nonetheless), parts get a lot easier - in this case, the words part just gets sorted out. The worries are still there and always will be I'm sure - in some ways different but in some ways the same re. my worries about our older (perfectly typical) child.

[Vicki Forman]

Thank you all for these thoughtful, incredible comments. My own little "secret," I should add, is this: I had no desire to talk to the mother at the swings that day. I knew she wanted to know, I knew she was being compassionate and hoping to demonstrate acceptance and reassurance, as Lisse writes, but I have also, over the years, grown so weary of that mother, and all the other mothers.

But in that moment of wanting my privacy back, of not wanting to explain, I also realized that if I didn't answer or respond or admit that yes, "all children love to swing" I would have done nothing to promote the dialogue. And that while I may be worn out so much of the time by the trials of raising my son, I could find that little extra bit of compassion of my own, to help start and continue the conversation.

Thank you, Christy, for the dialogue you yourself have started here. It means so much.

[Christy]

Sometimes I really want to share and sometimes even a kind-eyed questioner is too much to respond to not because of his or her words, tone, intention or energy but because I'm just too vulnerable or tired or I'm drowning in my own fear. OR as Laura mentioned I just want to play with my little one and not think about what is different or the same.

[Allysmom]

You don't need to be at the swings, Kristy. Your presence on the web educates us other Moms too. :) Thank your for your insight.

[Leslie]

It is through learning and understanding that we lose our fear of things or in the case of this discussion, differences in people. The more we know about something the less of a difference it is, and we have no reason to fear it anymore, even if it was silly to be scared of it in the first place. I think this is why we ask questions and make comments that can come out sounding wrong (I hope this isn't coming out wrong). We want to accept and not fear that which is different. We don't think about the fact that we may be the 100th person that has asked the same question that day.

My daughter has a birth defect that makes it so she can't turn her palm and arm up. Over the years it would come up and I would answer about it. After a while she had heard me say it so much that I would start and be looking at her and she would finish "the answer". This may be the way that it will go with those of you that have "the answer" to tell too. I realize this is not a big problem that she has, but because of it I have somewhat been on both sides of the swings. I don't think either side is easy.

[Christy]

Leslie, thank you for these words: "It is through learning and understanding that we lose our fear of things or in the case of this discussion, differences in people." I know this has been so true for me with Elias. Each new diagnosis is terrifying at first. And then I begin to understand it and its not so scary when I learn what it means and adapt accordingly. Thank you for sharing your perspective on both sides of the swings.

[Jenna]

My mother is the worst, "mother at the swing" and it makes an already strained relationship even worse. She calls and wants to know what Charlotte is doing now. She's four months adjusted age mom, she's dancing a jig in the middle of the living room floor...wait! I think she's about to piroutte! This question ("what's she doing now?") is always followed by, My friend's baby, just a couple of weeks older than Charlotte..." No mom, your friend's baby was born full-term, not pre-term, why don't you get this? What is so hard to comprehend? My daughter is over two months behind this. And for the record mom, there has not been one day in her life, since leaving the NICU, that I've obsessed over what she'll do or when she'll do it. She'll do it when it's time, or she won't and I'll deal with it.

Charlotte is doing just great! Ahead of her adjusted age and amazing me every day. I'm her mom and this is enough for me, why can't it be enough for my mom?

TY for your blog. My husband always says to tell people Charlott'es adjusted age when they ask because of the looks we get if we dont (when we rarely do go out). I don't bother with this. I say what her real age is and go on about my business. The awkward looks used to bother me and I felt the need to explain, but they really don't any more. Charlotte is smaller than others her 'real age' but Im very fortunate...she now has obtained that 'chunked out' look...in fact, I lovingly call her, 'Super Chunk' after the description on my favorite jar of peanut butter (Skippy).