Today has been a bad day.
The reality of raising a son with an intellectual disability seeps in, like floodwaters that rise and eventually flood the basement. For some people, these waters continue to rise, overtaking the house until even the roof disappears into the watery murkiness.
For me, the floodwaters are just beginning to creep through the basement windows.
Part of what I am struggling with today is the "Pollyanna syndrome." You know, the face that I am "required" to put on when I - the father of a son with Down syndrome - encounter the world. It's like I have to show the world that my son is worthwhile, that his existence is meaningful. "Productive." That his is a life of dignity.
The Pollyanna syndrome requires me to point to all of the accomplishments made by children and adults with Down syndrome. "Look, Johnny can bag groceries and say something nice. Timmy can shoot a basket and be part of the team. Jenny can swim across a lake. Look, look! See, they're just like you and me!"
Ian is not just like you and me. His genes are all screwy... it's like in the old film The Love Bug when the bad guys messed with Herbie's engine so they could win the race. Herbie was still technically a car, and a fine one at that, but his insides were out of whack. But we still loved him.
From what I'm reading, so much effort is spent trying to prove that people like my son are the same as everyone else, with just a little something extra. Ian is not the same. He is different. In philosophy we call it the Other.
We just need to learn to love the Other.
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27 comments:
Ditto - very bad day and a few glasses of wine.
Tom, I understand, I really do. Obviously our stories are so different but I do. No profound words - I haven't got any in me. Just feeling for you.
My son is not with me but I feel like I need to do something to help, something to change things...I don't know, something.
I know what you mean. My son isn't just like someone with the usual number of chromosomes, there is no getting away from that. He is different - fact. I love him so much, but it doesn't stop me hurting.
FallingDown (Joanne)
Sorry you're having a bad day. It can't help that the weather is taking another dark and cold and windy nosedive. I'm with you here...listening and trying really hard not to say something stupid. Love to you and wishes for a dry basement...
I am truly sorry if I sometimes say the wrong thing.
I remember after having Polly, everyone was coming to the hospital, all smiley, overly encouraging, annoying. One guy, really a very good friend, thought it would help that he knew a girl who had DS who is a real cool kid. "She can talk and everything".
I've been in the abyss many times, Tom. It sucks. I can say it does get better, but only with time, and it still creeps up. prayers...
I ping pong between both schools of thinking. I want Chase to feel like he can fit into "our world". But I also want him to be recognized for what he can uniquely contribute.
My father-in-law said during our early days that Chase wasn't the one that needed fixing- it was us who had the problem. Sometimes I think that he is right.
I know you read my blog, so I get points here, right? I keep hearing the voice of Hi in "Rasing Arizona" - "It ain't exactly Ozzie and Harriet."
I've had an interesting day - flat tire, screw work, got to go see U23D, had to buy new tire - crap (not U2 - the $$ for the tire, lol). Come home, put on the tire, wash my hands, and there's Emma holding her ball, wanting to play catch. The day changes. We play catch. She grins.
You're absolutely right. Our kids are not the same. We'll struggle with the expectations of the rest of us, I suspect, forever. It's a world of semantics. Today's word is 'different.' After all the advice and posturing and pollyannaisms, and even the stares and outright derision, there will be Ian. He's not really had an opportunity to advocate for himself, just yet. It's a power that you've only glimpsed.
I'm told that some American Indians taught that DS people were divine. We've got a lot of things backwards in our culture.
And you ain't gotta be nothin' you don't want to be. Nobody ever called me 'Pollyanna', or even 'Sunshine', for that matter.
amen.
I'm reading "The Cloister Walk" by Kathleen Norris and said the following: "It may be that our culture so fears the necessary other that it has grown unable to identify and name real differences without becoming defensive about them." Kind of reminded me of what you're saying here.
A.MEN.!!!
Oh wow, I'd better not get started on this soapbox. I need to just stand back and cheer at how well you stated what I feel intensely, but have struggled to put into words...
And Terri, that quote. Another wow. The implications of these thoughts goes so far beyond any one specific disability (or even giftedness--being "smarter" or "more gifted" in an area is its own can of isolating worms.) I so long for an environment where different ways of being are celebrated without being watered down. To live that way requires an ability to live with tension, mystery and uncomfortable paradoxes.
But, oh, how refreshing to be loved and accepted and connected to people as "whole package deals" without having to minimize, explain away or try to normalize differences. Without having to do a sell job of all the perks (the sell job seems counterproductive as if giving too much space to the thought that this person might be "less than" unless I work really hard to convince you otherwise.) There I go starting down my soapbox trail, so I'm stopping...
I guess it's impossible for me to have a clue here. But I'm trying. Do recognize many of the feelings and struggles because of my job. Even if it's not the same thing, of course.
About "the Other". Yes, we make sense of the world by putting people in that category, and maybe it's not even a horrible thing, just a "natural" one. The most important thing is to love "the other", I agree, but also to always remember that we are the ones creating the same. Right?
Take care!
The reality of raising a son with an intellectual disability seeps in
No Tom, the reality of raising a child - any child. Every child is unique. Every child has his or her own set of demands, requirements and gifts. At least Ian is less likely to end up as a Crack Dealer or running sweat shops.
It's like I have to show the world that my son is worthwhile, that his existence is meaningful.
Who to?
If you want to crusade and campaign in favour of those with DS, or anyone who is "Other", then you'll be able to talk from a position of authority.
And if you don't want to campaign, but just get on with raising your children, that's fine too.
When I put up my latest post, which is a recording of Meg reading, I toyed with the idea of adding the label DS and maybe submitting it to the DS Carnival, and then I thought, no. I've put this up because I've had fun with my daughter and the piece is about accents. It's got nothing to do with acheivements "despite" DS. It's a daddy-daughter piece.
No, Ian isn't like you or me, but then my wife isn't like you or me either ("it's all very well you philosophising about the universe, but someone has to empty the washing basket...").
We are ALL other.
Tom,
You have hit it squarely ion the face.
We are uncomfortable with the other, leaping to the assumption that "Other" equals less, inferior. It's fear that can sometimes makes us seek out sameness, the "look he's just like you and me."
The gift you bring, to embrace Ian as "Other" is a gift not just to him but the world.
Loving the Other is what, ultimately, opens us to loving our own selves, even that which we would rather hide.
Thank-you for these words.
They speak to me deeply.
Joanne: Sorry 'bout the bad day. Hope the wine helped calm things down a bit.
Don't worry about saying the wrong thing around here... this is a "say what's on your mind" zone. :)
Even though our stories are different, I know that you understand and can relate... I really appreciate your input.
Terri: I'm a fan of Kathleen Norris and read that book a few years ago... thanks for reminding me; it was spot on.
Lint: (Hope it's ok to just say "lint") :)
It's so hard sometimes... the "professional" educators for down syndrome issues tell people that they should congratulate the new parents but it had the same effect on me that it had with you. It was just so weird.
And "ouch" for the comment your friend made; you'll have to pop over here and read some of the comments I got when Ian was born.
Laurie: I know what you mean about the ping ponging; sometimes I feel like I'm at a tennis match and I'm the ball.
I like what your father in law said; I think there's a lot of truth to it.
elbog: You get lots of points from me, my friend. :)
The thing that jumped out at me the most with your comment was that Ian hasn't had the chance to advocate for himself yet. I wonder how many things he'll agree with me on one day? I always hope I'm representing his interests over my own, but know how far I fall short.
I've always been a people pleaser... a curse. But I can also be a bit of a jerk. Either way, I'm going to embarrass my kids in the end. Guess I just have to learn to live with it.
Eclexia: Always glad when someone else sees the world as I do (even when I'm wrong, which is never.) :)
I think one of the reasons I wrote about this topic was the "sell jobs" you bring up... the clips of the people with ds on tv often - not always - feel like just that. There never seems to be room for paradox or contradiction... Too "clean" and not an accurate reflection of reality. Thanks for the thoughts...
GIGBS: I think you "have a clue." :)
No doubt that we all create categories to lump people into... seems to make life easier and definable. I've still got to come to terms with how I want to approach my 'categories' for my son... tough. Thanks for your insight.
Kim: Every child is unique. Yes. But.
DS is different than color blindness. It just is. I haven't quite got the words for it yet. I need some more time with all of this.
Ian is different in a different way than other children are different from other children. And I'm OK with that and even more; I'm advocating FOR that difference.
I'm losing myself. I've got to get back to some analogies. Let me think about it.
I agree wholeheartedly that we are all other. But.
Let me mull. :)
Isabel: I still remember our Friday night gatherings and how we would talk a lot about how to encounter "the Other." And for all the talking we did, it was just the fact that we were talking that changed me so much. Funny how that works. Thanks for your own contributions to helping me be able to write my thoughts here.
I know it isn't really the same, but it's not too easy to define in what way it isn't except by degree.
I look forward to your mullings as I'd like to explore my own feelings on this in debate :)
When I encounter a parent of a new baby with DS, I do not say congratulations. I say, "How is he/she doing? How's his/her heart?" With a smile and warmth.
It's what I can manage.
Kim: Still mulling..
David: My sentiments exactly.
I was thinking what Kim said. Hope the last couple days have been better. Much love,
your cuz
Yes, Ian is different. He has an extra chromosome.
But, do you really know to what extent that extra chromosome is going to effect him in the long run?
Do you really know how different he is going to be?
No
Our kids are never going to be like everyone else; however, I do believe that they may not be as different as was previously thought.
Look at these stories that have been in the news lately. Maybe the point isn't, "they are just like everyone else". Maybe the point is, "they are not all that different." There is a subtle difference. People have a lot of preconceived notions about Down syndrome. These stories are proving that some of these notions are downright wrong.
When you listen to individuals with Down syndrome advocate for themselves, what do they say? They say don't feel sorry for me, treat me like you would treat anyone else. I'm not as different as you may think.
We just need to listen to them and maybe accept that we just don't know it all.
Maybe instead of being a Pollyanna. You should just say, "My son has Down syndrome, and i don't have a clue what it is all going to mean. What I do know is I love him and we are going assume anything is possible for him until he shows us differently." That's my new take. I want to try and be positive without being totally unrealistic.
We have a lot to learn.
I hope the flood waters are receding a bit today.
I post stories, videos, clips of my daughter shooting baskets. Why? Because I believe they give hope to other new parents, that their childs life WILL be more normal than not. I also do it for HER, I want her to know that I see every little thing she does, works hard for, and I am proud of her. Our house is filled with photos of her jock big brother in sports, hoisting trophies. It is what she wants for herself. It is what I want her to have, the ability to go out and do her best and be recognized for daring to gamble. But my child is 9 years old. Now, it is HER map we follow. She is actually pretty good at sports, and she is respected for that amongst her peers. I think maybe you have not yet come to the realization that it wont matter what YOU think so much as what IAN thinks. He might just decide that he wants to participate for him, not for you, not for the feelgood aspect of it, just for HIM. And that will make you proud. And you might even want to share that pride. And the world goes round...
Elsie: Thanks for the thoughts.
Chris: "Maybe the point isn't, "they are just like everyone else". Maybe the point is, "they are not all that different." There is a subtle difference."
I completely agree with that, and appreciate you clarifying the difference.
I guess I don't want to "remain positive." I want my emotions to correspond to the situation. I can hope. (I don't think I'm splitting hairs here) I hope that I love Ian well, that the world will accept him and that he finds his place in it. But I am not positive in my feelings. Hope that wasn't too muddled.
Appreciate the input.
Michelle: Like I mentioned above to Chris, I try to distinguish between "hope" and "remaining positive." And I really do think it is important to flesh out how these two are different.
Hope, to me, means predisposition towards the world that does not have to be positive. Yet it is hopeful. Maybe I'll work out my thought further in a post later. (and hopefully not put everyone to sleep.) :)
I plan on filling ever corner of my place with whatever awards or accomplishments my kids earn. I applaud you doing so too. But I know you agree that you wouldn't love either one less if there were no awards or ribbons or videos.
All I'm trying to point out is that the world seems to ONLY focus on what the accomplishments are. I want to get away from "accomplishment" as the standard by which we are judged or judge others by.
Thanks for engaging me.
Tom, I absolutely agree that you should not try to remain positive if the situation does not warrant it.
God knows, I don't always feel positive.
By the same token, I think you just need to be careful that you aren't being overly negative if the situation doesn't warrant it.
Sometimes it is just hard to figure out what the situation warrants.
I was watching the Today show this morning. They were recapping the ads from last night's Super Bowl telecast, and a quote stuck with me.
"Positive is the new black."
That one kind of made me chuckle a little, ah if it were only that easy. I've got plenty of black in my closet. If staying/feeling positive were as easy on slipping on an outfit of black, life would be golden.
I think Laurie's father in law had it right. There isn't anything wrong with our kids, it is us that needs fixing. It isn't our kids that are the problem. It is that fact that we need to raise them in this world.
As I watch the human interest stories that have been in the news lately, I find myself more interested in the parents more than the individual with Ds. Karen Gaffney's parents said in their Today Show interview said that there are Karen Gaffney's all over the country that just aren't being recognized. They said that we need to change the data on Ds. Their daughter's success they attributed in part to the strides that the generation before them made in opening up the education system to include individuals with Ds. Our kids will benefit from the successes of people like Karen Gaffney.
I ask myself, what contribution will our generation make. We need to do something.
Something positive.
I look forward to your post on Hope.
Tom, I think what you are saying is you are being realistic. Parenting isnt all rosebuds and high fives. There is a LOT of dirty and down in it. I have raised a moody young person to near adulthood...trust me on this one...its TOUGH. LOL I think that you just find that line between patting the dog when you see its tail wag and keeping your hands in your pockets because you are SURE it will bite. Hope is a good thing. But experiences train us in our responses. (Am I making any sense?) I think you may still be somewhat believing that the world is mostly unkind/unfair/bad/mean to those with DS. It really isnt. I promise. But I have noticed that our perceptions as parents can really cue the world. You cant never make eye contact because you are afraid people will stare. You learn to filter the stares and see the smiles. The smiles are way more common. For me, having a child with DS means losing my negative expectations of how the world will see her and allowing myself to be moved by how well-loved she really is. Thats been a huge surprise to me, that people seek her out to say hello. The world is actually pretty OK with DS. Strange, huh?
Chris: Thanks for continuing to help me clarify things and "pushing" me. :)
No doubt about it, I'm a glass half empty kind of guy. Working on allowing the positive aspects take their proper place.
I also watch for the parents reaction to what their children are doing... most have been very articulate and inspiring.
I completely agree. So much more needs to be done to continue to help people with ds. I hope to be adding my two cents. Thanks.
Michelle: Your saying made me laugh out loud (...line between patting the dog when you see its tail wag and keeping your hands in your pockets because you are SURE it will bite...)
I want to believe you that the world is OK with ds, but am not sure how to reconcile what you're telling me with the fact that 90% don't ever see the world. But I get where you're coming from. There are a LOT of good people who will see the good in my son and I do need to give them the benefit of the doubt.
Thanks for the reminders to keep looking for the good.
Oh, there are many a day when I am bemoaning the fact that the glass is half empty (actually there are days when is seem like more than half). With the diagnosis, we can spend your whole life appreciating the emptiness of the glass if that is what we choose to do. We won't though because we can't. We love our kids too much, and we know we need to be a positive voice for them.
I agree, it is hard to think of raising our kids in this world. I hope Michelle is right that there being more good than bad. As you say, it is hard to be optimistic given the abortion rate.
I venture to guess that most people aborting still have that old, scary, stereotype in their head. I doubt they are picturing people like Karen Gaffney swimming across Lake Tahoe and lecturing across the country as they decide that they are going to terminate a pregnancy. Fear and ignorance are a bad combination.
I have no doubt that you will be adding more than your two cents as you advocate for your son and others like him. Your voice is very powerful because it is honest.
know what *I* think? I think that the online world tends to expose us to extremes on one side or the other of the subject. Meaning, the vicious proabort, "terminate them because they are useless" crowd and the "they are all saints and angels" crowd.
WE are somewhere in the middle, we blogging parents. We tell it like it is, the good and the bad. In our real lives, most of the people we will see have very little experience with DS (think...US...before we had our kids...what did you know? Me, not much!) they will take their cues from how we interact with our kids.
If you figure that over 90% prenatally diagnosed abort, it sounds scary and huge. But think HOW few pregancies really HAVE DS involved, even counting the 90%? Statistically speaking, there are not that many folks pregnant with babies with DS, at conception.
Suppose there is one DS pregnancy terminated every year in your town. How many babies are born? How many typical, how many with DS? MOST people dont even consider hating or despising our kids, they simply dont KNOW THEY EXIST, generally speaking. Their experience is watching an episode or two of Life Goes On 20 years ago. YOU and your beautiful son will be their experience...all but a tiny fraction of the people you know will be oblivious, wide open to your interpretation!
If you ever want to shock people, tell them that 90% plus abort kids JUST like yours...it truly stuns people. People dont know it is happening, it is a quiet epidemic. I have read a lot of articles in various newspapers about this topic, google a few. You may be surprised by the comments made by readers, some may be jerks (again, usually sent by one or the other "side" to "go read what they said about us"...) but MOST people are appalled.
You know what? You are doing so well, you are really asking so many questions, challenging yourself so fully. You are going to be fine, but even more, you are already an asset to the DS community. Really.
Chris: Here's to more days when the glass is half full than empty and to more people like Karen making all our jobs of advocacy easier.
Michelle: No doubt much of the conversation about these issues is polarized and divided. And I think you are so right that the best way to make a lasting change is to do it within my own community (introducing people to my son, etc.) Thanks for the continuing encouragement.
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