What a wonderful entry. I want to tell you that your suspicions about the nature of our blogsphere Venn diagram-- in which the moms of special need kids are "off in a corner" with no intersection with the rest of us-- is wrong. But I know your suspicion. As I read your entry, I felt my own suspicions rising too.

Let me share a story. When I first starting excitedly announcing to the world that we were (are) going to adopt, I received the most shocking reaction. There, amidst the congrats, were more expressions of doubt than I cared to examine. People would gently-- or not-so-gently-- probe with questions of "Well, what if the child isn't as smart as you?" "What if the child is flawed somehow?" It drove me insane. I won't pretend that I have not worried about such. But I could not believe the weight that my colleagues were placing on the seeming perfection of children rather than on happiness. I also, for that matter, couldn't believe their seeming conviction that bad things might happen through adoption, but not through my own obviously fabulous genes.

I do worry, but I worry far more about whether we will be able to form a family that is full of love and happiness. That's what matters, right? Happiness? Being the best we can and enjoying life when we can and learning to deal with the bad that comes along in there too? 'Cause, damn, there can be a lot of bad.

I dunno. I read blogs like yours and I am impresssed. And, yes, I am a little scared about how I would deal with a child with a disability of some sort. But I don't shy away. Mostly, I see the beauty in your life and your writing and I am happy that it has been shared. I see the same in the writing of others with children who are not "perfect." I share their fears, I cry out at the unfairness of the struggles that they and their children and faced with, and, yes, I get pissed when I hear random slights like "retard" thrown out as though they are perfectly acceptable.

Really, I do think that there is overlap in those Venn diagrams. You are no more just the mother of special needs children than your children are just defined by being different. And I think that your writing helps the rest of us to remember that overlap and to feel that camdraderie.

I'm really rambling here. Sorry. I'll stop now.

I'm thinking on this, and hopefully I'll have a coherent comment later today. My initial reaction, though, is that you're not wrong.

And the amount of happiness that Venn diagram brings me is completely ridiculous. Jelly bean. Dragons. Heeheehee.

Hmmmm. This is fraught with pitfalls and possibilities for misunderstanding.

I don't know that the mother of a "normal" child can really relate to those of us with kids who are different - and I'm classifying myself that way because I've heard comments that will curl your hair. I have a friend who has said, on numerous occasions, "I could NEVER give my child a shot." The last time she said it, I snapped. "No, I can see how it would be much easier to just LET HER DIE." Stupid cow.

I also wonder if we don't sometimes put up barriers ourselves. Sort of like the cliche of the Vietnam vet - "You don't know because you weren't there." I know a lot of other parents of kids with diabetes and we can be a very prickly bunch. We know the rest of them don't get it, they'll never get it unless they have to walk it themselves and so we tend to shut them out a bit. Not fully, of course not, but there's a definite attitude there. I see it in myself as well as others.

So maybe it's a bit of a two-way street. It's hard for the "normal" parent to empathise, but it's also hard for us non-normal parents to let them in.

I'm a mommy serial commenter, rather than a blogger, but I'm still going to comment.

I won't dispute your central premise because all I have are anecdotes. I can share my family's experiences, but I don't mean that to say "therefore what you've said is not correct."

There is a certain amount of integration that I've seen, at least. When we go on vacation, we have a friend there with a T21 son, and our son plays with him. My husband explained to our son early on that Friend A had some differences, and our son understands that (at an elementary-school level). They have fun together, and we always chat with Friend A when we see him, and it doesn't occur to us to make any particular comments. When I heard the word "retarded" in a movie, I told our son that that was cruel, because they were taking a word that once was used to describe people like Friend A and they made it into an insult. Our son was outraged ("That's not fair! It's something about his brain, it's just how he is, and it's not something to insult") and I said it was even worse than that because using that word as an insult meant they were saying that to say someone was like Friend A was a bad thing. I compared it to other things we've said should never be used as insults, like saying someone's actions are "so gay" (when we don't think there's a problem with being gay) or, on a milder level, yelling at boy athletes that they're acting like girls. I'm not sure how clear I made it here, this may all be a jumble, but my point is that we do call attention to it and inculcate in our son (who is fiercely interested in doing justice) that these are wrong things to do, not acceptable in our family and things we can speak out about when we see them.

My son hasn't seen any ads for the horrific "comedy" that's playing here, "Little Man," but if he does, I will make a similar point about it. Since I don't blog, I don't have a wider forum, but we want to raise our son to do the right thing.

He also has a friend at school with cancer, and another friend with a prosthetic leg. He takes the leg for granted, just mentioning casually one day that Friend B showed him his "robot leg" and it was cool. He's also met co-workers of mine in wheelchairs, including one whose speech is somewhat difficult to understand, and after asking questions the first couple of times, came to interact with her just the way he did with other co-workers ("Look, Mama! There's Friend C! Let's go talk to her.")

That's my anecotal level. I don't mean to say you're wrong, and the world is all cherries and sunshine. Just that I see some integration on a local level.

And after seeing Julia's post, I want to make the point that saying I see some integration (I thought that was the word you used, but now I don't see it -- perhaps some interaction is what I should say) doesn't mean I'm saying that I know what it's like to be the parent of a special-needs kid. Absolutely not. But reading your blogs has given me some window into it, and some reminders of things not to say or do.

There is a lot to talk about here. Like Genevieve, all I have is anecdotal evidence, so I can't say if you are right or wrong. My guess is that you are a little bit right, and a little bit wrong. My children are "normal", except for the fact of Isaac's health, which doesn't exactly qualify as as special needs, but then again does open up BIG doors for teasing and self esteem problems for him in adolescence and beyond. Similary, I don't consider myself "infertile" but I did have fertility issues with Isaac, to the extent that I saw an RE, I had several miscarriages, etc. etc. I read infertility blogs and I read a few blogs of "special needs" kids. Honestly, sometimes I lurk at the special needs blogs because I don't feel qualified to comment. I don't want to come across as condescending and I don't want to rub other moms' noses in the fact that my children are mostly normal. But I am very aware of people with differences in our daily life, and do my best to explain them to the kids, the way Genevieve has done. My uncle is retarded, we have a friend whose daughter is a bilateral amputee, a family friend with Ausperger's, etc, and I try to one the one hand explain to the kids about the differences, but on the other hand make it a normal part of life.

Sorry for such a disjointed comment, but I'm rushing out the door . ..looking forward to reading more comments.

Genevieve and others, please do go ahead and say that you think I'm wrong if, in fact, that's what you think. It would hardly be a reputable research model if I restricted myself to sources that agree with my preconceptions. So personal anecdotes both for and against are perfect. Thank you.

Julia, yeah--what to do with parents of kids with diabetes was tricky. I think you guys straddle both categories, in that your child looks and acts perfectly normal and healthy--you have to approach and get to know them to learn about their condition. Does that make sense? (That comment always irritated me, too--"I could NEVER give myself shots. I would JUST DIE." Sure.) Whereas if a child is in a wheelchair, or has a craniofacial syndrome, or was born without an arm, it would be immediately obvious and evoke a different response. I think.

You make a good point about the prickliness. I'll have to think more about that.

Meredith, thank you, and please ramble. Like I have any moral high ground when it comes to brevity! Ramble away.

The venn diagram does make it look like the boundaries are a lot more solid than they are--I would venture to guess that many people could find themselves in multiple categories, maybe even changing over the course of one day depending on the environment.

I'm always hesitant to say this because as soon as I do, people stop talking: the more comments, the better. And the more respectful disagreement, the better. I hope everyone feels free to offer their own opinion whether they agree with me or not.

I've been lurking here for awhile but this fascinating post has pulled me out of hiding!

I'm not sure where I place myself in your diagram (VERY cool diagram - I wish I knew how to make one!). My son may or may not be "on the spectrum" pending his autism evaluation this fall, but at this point my day-to-day life is basically that of the "Regular Mom."

I think a lot of the dynamics you've identified have to do with the nature of the blogosphere. There are so many wonderful blogs that one person cannot keep up with them all, so each reader has to develop her own criteria to determine which ones she visits regularly. Obviously, we look for blogs we enjoy, but we do so within a frame determined by certain commonalities. Personally, I rarely read daddy-blogs, or blogs by moms of teenagers, and I don't read any non-parent blogs. (I have other interests of course, aside from my children, but for some reason I don't feel the need to pursue those interests in the blogs I read.) And even when I've delineated my boundaries so ruthlessly, I still have thousands of wonderful blogs to choose from. So I look for some sense of kinship based either on personality or shared circumstances. I visited your blog a few times and loved your rigorous, research-laden posts, so I added you to my Bloglines and only later did I realize that your daughter (who must be quite close in age to my son, I think) has a condition that makes her different from my "regular" (or maybe not so regular) toddler.

Another factor is the one-click-away aspect of blogging. I've never used a search engine to find a blog to read - I always click to new blogs from comments or links in the blogs I'm already reading - and if I see a name mentioned a few times by people whose writing I enjoy, I'm that much more likely to check it out. So inevitably certain "circles" begin to form in the blogosphere, of people who are all reading and commenting on one another's blogs. Those circles are inevitable, but they may often seem to exclude those not currently "in" the circle, especially if they have formed around a particlar issue or circumstance that the random visitor may not share. I know I occasionally feel a bit embarrassed, as if I've been caught trespassing, when I sense that I've stumbled upon a closed conversation.

In a lot of ways the blogger creates her own audience. I posted about this a few weeks ago - the assumptions I make about my audience. Those assumptions exert an enormous influence over what and how I write. I use blog-jargon, knowing that those terms will be recognized by the fellow-bloggers who make up the bulk of my commenters (though not necessarily of my readers). I allude to stuff that's happening elsewhere in the blogosphere, confident that most readers will know what I'm talking about. I don't write posts about my faith because I know that most of my readers are not practising Christians (there are, of course, lots of Christian mommy-bloggers, but they seem to keep to themselves too, a little bit, and for various reasons I feel more comfortable in the little corner of the blogosphere I've chosen to join). I don't think that these circles are formed out of mutual suspicion or dislike or prejudice - I think that they're the result of that very powerful drive to find people who know exactly what I'm going through, people who understand. And for the most part, that will mean people who are like me (I even catch myself returning most regularly to bloggers who live near me, though geography has so little to do with the traits that really matter in the blogs I read!).

Nevertheless, I think you're right that this circle-forming really limits the potential of the blogosphere to bring people together across the various cultural divides that separate us. The Internet as a whole has the tendency to divide people into VERY narrowly defined interest groups. But every once in awhile there's one of those little bridges you spoke about - blogs with a foot in two separate circles that allow for a bit more communication and understanding. It sounds like your blog is a bit like that - and if your back is aching it may be from all those feet tramping back and forth!

Sorry I haven't posted for a while but I'm still here, reading fairly regularly so don't forget the "non-moms-who-are-hoping-to-be-moms." :) My response here today may not be exactly what you were asking for, but I wanted to write something anyway. I often feel like I don't have a whole lot to offer on this blog because your posts are so well thought out and thoroughly researched; I usually just find myself nodding my head and learning something new. Or cooing over special Frances moments and photos, of course! I just want you to know that you are an inspiration to many not only because of your intelligence and pursuit of knowledge/truth/integrity and so on, but because of your honesty. I appreciate the opportunity to come here and read about your experiences with motherhood and life, because we can all learn from each other no matter what our specific experiences are. Thanks for sharing so much of your life with us - I think you will be terrific on that panel.

I didn't read all the comments (sorry everyone but I'm supposed to be working : ) I don't read the blogs of moms with kids with disabilities, except yours or Moreena's, but then again I don't read many blogs. Whether the mom's kids are like mine is not a determining factor -- what matters is the mom's mind, and whether I feel I somehow click with her. Or I should say the parent's mind, because I love to read Daddy Chip too.

By the way you didn't mention daddy blogs.

The other day I went to the park with my 2-year-old and while there, a mom came with her son who seemed to have Down's syndrome. We said hi like we usually do and Sasha tried to talk to the boy like she usually does. But I was really unsure how to handle myself. In this small town when we're at the park w/ strangers we always talk to them, try to find common ground and joke a bit, because being at the park with kids is really fun. But in this case I had an uncomfortable feeling that the mom wouldn't want to find common ground, that maybe she was tired of having to explain her son's behavior and condition. I get that feeling sometimes from people whose kids have problems. Like they just want to be alone with their kid & not have to think about his disabilities -- just be with the kid & enjoy him.

Does that answer your question? -- I think sometimes exclusivity is a good thing. We are here in a safe place to talk about something dear to our hearts, no worries about ridicule or misunderstanding. Your blog is educational but maybe not everyone wants to have to educate all the time, you know?

That said, you're right that those of us with "normal" kids tend to be oblivious of people with problems. I am, at any rate.

I think you have a very interesting topic here. As a mother of a "normal" kid who had a normal pregnancy and delivery, I come to Beanie Baby for lots of reasons. I come because you're a great writer, and I come because I think Frances is great. I don't care about her diagnoses in the sense that it makes her different. I *do* care that you are still suffering with insensitive clods who ask inappropriate questions and with doctors who can't give you a specific condition that you can research.

Yes, I have a normal child, but I have worked with and known plenty of children with disabilities, and I know that there are all kinds of people in this world -- that's what makes it great. I love Frances. Knowing about her struggles makes me feel connected somehow to someone I never would have known otherwise. I will probably never get to meet Frances or you IRL due to such distances between us, but I would love to. Reading Beanie Baby has taught me to be more cognizant of what I say and do, and to appreciate *everything.*

I do have a wonderful, beautiful child, but so do you. Frances may have an undiagnosed form of dwarfism, but our love for her is measureless.

Bubandpie, welcome, and thank you for the thoughtful comment. Yes, I think the internet as a whole tends to exacerbate this--what was the saying? That there's a website for every subfetish somewhere, no matter how bizarre or obscure?

Kristina, I'm not forgetting you, and thank you. That was very sweet. And my head is expanding.

True, Jennifer--but the Mystery Conference is about mothering, and while I thought about Daddy blogs, it's outside the boundaries of this particular presentation. (Wouldn't want anyone to think I was excluding half the population--they've been excluded for me.)

I think the don't-talk-to-me impulse probably has a bit to do with it, true. On the other hand, I know several of the blogs I read by moms who have kids with various differences or special needs *are* trying to be educational--they talk frequently about the need for raising awareness and their hopes for doing so, about their difficulties in navigating with the outside world, and so on, specifically with the goals of educating people--but then their audience ends up being mostly people who are in the same boat.

I can see a crisis hit the T21 community like a bomb, for instance, and the blogring likes up like fireflies for a week about it. But it never makes it outside the community (and I'm not excluding myself from this observation). It reminds me of how crises can hit the momosphere in general--a new breastfeeding campaign, Linda HIrshman--and every mom blogger in the known universe covers it, but none of the Big Political Bloggers or Big Social Bloggers do, and why? Because mothering is considered non-political or non-social and thus boring to them or their audiences, right? Which is what makes me wonder if there is an unconscious barrier for moms of kids who are perfectly normal and healthy (and good god, there has to be a better phrase) who see the special-needs-moms as "Other," and their problems as "not my problem." As not particularly important or interesting.

I have no idea if I'm making sense.

Awwww, KLee, thank you.

Andrea, you're incredibly hard on yourself. I came here thinking today was Monday, and where was the bragging? By the way, do you have to force yourself to "brag"?

I resent that celebrities testify before the U.S. Congress, and you may not consider yourself an expert, but I would prefer to see you testify, even though it's not your gov't, because you are more real to me than celebrities.

I don't know how large your readership is, but it is comprised of funny, caring people who cheer you on and adore Frances. You are teaching us not just about the way Frances negotiates her world, but about a wide variety of subjects I never expected. Every few hours, I remember the fistula post.

If we think the world is a big, bad place, then it is, in part because we are giving up and therefore allowing it to be that way. You control your own ideas, which influence your actions and therefore your environment. Everything we'd like to change about the world starts with us. Just as Genevieve is teaching her son to think of his friends in the midst of appalling behavior, each of us can take on bullies and include people who are rejected. I am retraining myself with the goal of eschewing gender stereotypes. It bothered me that it bothered me when I couldn't tell someone's gender. Realizing this was in my control, I stopped caring. The question "Is that a boy or a girl?" still leaps to mind, but I remind myself it doesn't matter and I move on.

Those people who are congratulating themselves on not having children with certain conditions --it's terrible that they publicly congratulate themselves for not living someone else's life. I've never understood that because it's all relative and it's all theory until it happens to you. Yes, my sunblock rash wasn't cancer, but it was mine. The fact it wasn't something else doesn't make the rash itch less, nor does it improve my attitude. Counting your blessings is great, but it's weird to be grateful for and count as blessings situations that don't exist for you. If that made sense to me, I couldn't get any work done - I'd spend most of my time being relieved I'm not male. Whatever you think of those people, at least they're not subjecting innocents to their judgment. (Unless they are parents to children they considered worthy.) But I admire the ability to judge your own abilities. If they're not going to thoroughly love their child as-is, then I don't blame them for deciding not to be parents. As awful as you feel reading that crap, it would be worse to read it and live it as their child. Now, if they go further and have a checklist and are waiting for science to catch up so they can buy a made-to-order drive-thru (but not supersized!) baby, well, in the words of Bartok, "This can only end in tears."

My mother used to say, You have two options: you can laugh or you can cry. She always chose the former.

Beautiful post, Andrea. Gives me something to think on, certainly.

Disjointed thoughts from various angles...

Like others have said, I don't choose blogs to read primarily because of their "like me" writers. I follow links and recommendations of bloggers I've already found and liked, and if what I read strikes me in some way - if it makes me laugh, or resonates deep within, or whatever -- I'll bookmark it, or add it to my RSS feeds. I'll follow it that way for awhile until I see whether it continues to make me laugh, or make me cry, or make me think in new and different directions.

On the subject of the "normal genes, normal health/pregnancy/birth" group: I think it all exists on a continuum, to be honest. There are people who *begin* blogging because they want to write about their child with a disability and the experience of parenting that child. There are also people who begin blogging to write about their infertility or pregnancy experience, who then might have a child with some level of disability. Is there a difference between self-identified "disability mom bloggers" and those who happened towards it on a different path? I don't know. But it might affect the content, and the focus, and thus your perception, of what the blog is about -- or what blog community it should lie within.

There are other social pressures that affect blog content too - writing with a consciousness of audience ("my family might read this, my coworkers might read this") can put all kinds of filters on what gets said. In my own experience, my older child has a lot of what I've come to realize over time are sensory issues, as well as some gross motor concerns that I'm realizing (now that I have his little sister as a comparison point) are not inconsequential. However, they (to use the language of the ADA) "do not rise to the level of disability) and so I mostly choose not to blog about them, because of my perception that my family thinks I make too much of those issues, and my own desire to avoid putting labels on him in writing that he may one day read...

I'm not sure where I was going with this - but the question of audience and self-filtering is one that plays a large role in blog content and thus in audience-building, I think.

Andrea, how many of your posts can I have saved for posterity? It's really getting a tad ridiculous.

I blog with many different hats on, and I fervantly hope that some of the folks who stumble in because they think they know what they're getting (a type 1 diabetes blog or an infertility blog, most often) will learn something new - about living with diabetes, about adoption, about the frustration of being gay in W.'s usa... I could go on and on. I know that I've learned a lot from accidental blog stumblings - about the joys and frustrations of parenting a fantastic little (in every sense of the word) person, about not underestimating people of faith or stay at home moms, about living in the south, about vermicomposting (how ARE the worms doing, btw?)etc. etc. etc. And those accidental exposures - discovering where our venn circles overlap - are one of the things that I value most about the blog-o-sphere

Sometimes I feel as I did in high school - that I'm on the fringe of lots of different circles of friends and at the center of none of them. The difference being that, unlike in high school, I'm just fine with that.

Thanks for a thought provoking post!

My experience is that I have more support and empathy from blog-friends, as well as various groups I belong to on the net.
My experience in my town is that most of the people can all rot and fall down for all I care! I'm a bit bitter though at the society where I live. It's mostly closed minded people who are at least 20 years behind in their ideologies or beliefs.
The one's who do understand us in the real world are those we deal with, therapists (And even then it's tough because although they have children, they don't have a special needs child!) Nurses, etc.
In blogland those other moms are walking in my shoes. They feel the same isolation.
Two weeks ago I walked downtown towing my son in a wagon. I got the stares, I felt them burning wholes right through me. As I'm walking up a hill huffing and puffing trying to lug this child you'd think anyone would offer to help me a bit? Hell no!
But the minute I get home, I can email another mom, and I get the virtual hug I need.
I'm not sure if this is the kind of experience you are looking for. All I know is that I get a lot more out of life through my internet connection than I do "out there" in the real world. I am a hermit by nature but I do force myself to get out once in a while.

My experience is that I have more support and empathy from blog-friends, as well as various groups I belong to on the net.
I feel more often than not we are pittied because of our situation, two poor folk, disabled mama with even more disabled son.
My experience in my town is that most of the people can suck toads and be covered in warts! I'm a bit bitter though at the society where I live. It's mostly closed minded people who are at least 20 years behind in their ideologies and beliefs.
The one's who do understand us in the real world are those we deal with, therapists (And even then it's tough because although they have children, they don't have a special needs child!) Nurses, etc.
In blogland those other moms are walking in my shoes. They feel the same isolation.
Two weeks ago I walked downtown towing my son in a wagon. I got the stares, I felt them burning wholes right through me. As I'm walking up a hill huffing and puffing trying to lug this child you'd think anyone would offer to help me a bit? Hell no!
But the minute I get home, I can email another mom, and I get the virtual hug I need.
I'm not sure if this is the kind of experience you are looking for. All I know is that I get a lot more out of life through my internet connection than I do "out there" in the real world. I am a hermit by nature but I do force myself to get out once in a while but I can't stand the idiocy of people out there!

My experience is that I have more support and empathy from blog-friends, as well as various groups I belong to on the net.
I feel more often than not we are pittied because of our situation, two poor folk, disabled mama with even more disabled son.
My experience in my town is that most of the people can suck toads and be covered in warts! I'm a bit bitter though at the society where I live. It's mostly closed minded people who are at least 20 years behind in their ideologies and beliefs.
The one's who do understand us in the real world are those we deal with, therapists (And even then it's tough because although they have children, they don't have a special needs child!) Nurses, etc.
In blogland those other moms are walking in my shoes. They feel the same isolation.
Two weeks ago I walked downtown towing my son in a wagon. I got the stares, I felt them burning wholes right through me. As I'm walking up a hill huffing and puffing trying to lug this child you'd think anyone would offer to help me a bit? Hell no!
But the minute I get home, I can email another mom, and I get the virtual hug I need.
I'm not sure if this is the kind of experience you are looking for. All I know is that I get a lot more out of life through my internet connection than I do "out there" in the real world. I am a hermit by nature but I do force myself to get out once in a while but I can't stand the ignorance of people out there!

oh crap, i'm so sorry for posting 3 times. i kept altering my message but it posted it anyway, grr!!

LOL--Laura, it happens. Don't worry about it. And thank you for the thoughtful comment. I hear what you're saying--that the online world provides a community that is totally lacking in real life--and I completely agree. I just think it would be nice if the communities showed more obvious signs of intersection, so that people could learn from each other.

Macarena, ah ... am I? IT doesn't feel like it (re: being hard on myself). But thank you.

Sara, thank you, those too are good points.

art-sweet, the worms are doing very well. :) And see, that's just it--there's so much potential for circles overlapping and people learning things from new perspectives, yet it just doesn't seem to happen as much as I'd expect.

I'm not sure where I'm going to end up going with this, but thanks to everyone for posting such thought-provoking and insightful comments. I'm going to leave it open for as long as people would like to add to it.

Andrea,
This is one excellent question, and you've posed it in the best way possible. I am going to have to sit down and write a whole thing on this, because there would be so many qualifiers if I tried to come up with something to fit in a comment-box. It's great to hear so many voices chiming in, too, with their thoughts and experiences.

Andrea, I've been thinking a lot about this post since I read it yesterday.

One complicating factor here is the lurking factor: I read a lot more blogs than I comment on, and I sometimes don't comment on posts written about kids whose medical or developmental issues are considerably more complicated than Curious Girl's (esp now that her biggest medical issues seem to be mostly solved). Now, that kind of reluctance to comment might well be a signal of some kind of problem, but it's also an issue that suggests the issues of boundaries might be more complicated.

I haven't been able to find the Geeky Mom post I'm thinking of, but sometime last year she posted a graphic way of representing links between blogs and relationships. I wonder whether that kind of graphic organizer would be another way for you to think about representing some of these issues.

I'm going to think on this, and probably write more over at my own place when my thoughts are more coherent. These are such important issues.

Moreena, check your email. :)

Susan, that is a good point. I don't know how one would even begin to measure or estimate the lurker factor. If you do write about it, please let me know! And that sounds like an interesting tool, I'll have to look for it as well (not fair to have you do the searching for me, after all).

Very thought-provoking post you have here! I'm interested in being involved in whatever way you need input - surveys or answering questions. It'll be interesting to read what you come up with on this. I like your vision and think you would be a great asset on this panel!

I can't yet say it with a straight face myself, so I don't blame you for laughing. Me! On a panel! Talking to experts!

See, Andrea, I read that and go, "What? Who better?"

If you wanted to find out about your lurkers, you could do a survey and ask that they e-mail their answers. If I hadn't delurked, that would work on me.

I stopped reading after a few comments because my mind was swimming. I think that what Julia said is where I stand, mostly.

I, personally, want to be involved in all children's lives, whether they are what society has deemed normal or not. I have 4 children. Healthy and I am thankful for that. But because my mom worked for county social services all of my growing up years, I may have a different understanding than some others. Because of her job, I was offered the opportunity to do respite work for local families.

I became comfortable around children who had either physical or mental differences. If I am going to be honest (and shouldn't we?) I have to say that made me a better friend when 2 friends' daughters needed open heart surgery, and one friend's daughter was born with Down Syndrome, and another with autism, and another with CP.

My point is that many people are not exposed to ANYONE different from themselves and do not know how to handle those differences. That is so not an excuse, but maybe a reason.

Back to what I really liked about Julia's comment. She said that it is sometimes a us vs. them attitude and who knows which group is bringing it on. I have a friend that I cannot say ANYTHING about how bad of a day I had with my kids because right away she says, well then you would never make it in my daily world with such&such syndrome. It makes me sad, because I know that we live different lives, but when she doesn't allow me any time to share my frustrations because hers are worse, it chips away at our friendship. Maybe commiserating with those who truly understand your struggles is just easier. Maybe that's what eventually sends us into separate camps. I hate that.

I stopped reading after a few comments because my mind was swimming. I think that what Julia said is where I stand, mostly.

I, personally, want to be involved in all children's lives, whether they are what society has deemed normal or not. I have 4 children. Healthy and I am thankful for that. But because my mom worked for county social services all of my growing up years, I may have a different understanding than some others. Because of her job, I was offered the opportunity to do respite work for local families.

I became comfortable around children who had either physical or mental differences. If I am going to be honest (and shouldn't we?) I have to say that made me a better friend when 2 friends' daughters needed open heart surgery, and one friend's daughter was born with Down Syndrome, and another with autism, and another with CP.

My point is that many people are not exposed to ANYONE different from themselves and do not know how to handle those differences. That is so not an excuse, but maybe a reason.

Back to what I really liked about Julia's comment. She said that it is sometimes a us vs. them attitude and who knows which group is bringing it on. I have a friend that I cannot say ANYTHING about how bad of a day I had with my kids because right away she says, well then you would never make it in my daily world with such&such syndrome. It makes me sad, because I know that we live different lives, but when she doesn't allow me any time to share my frustrations because hers are worse, it chips away at our friendship. Maybe commiserating with those who truly understand your struggles is just easier. Maybe that's what eventually sends us into separate camps. I hate that.

Oh, crumb. Now I did it. Sorry for the double comment.

I'm a "regular mom"...or at least I am now that I conquered my anticardiolipin syndrom infertility issues. I'm usually a lurker but this post made me want to say that I'm listening and you aren't alone.

I make it my business to correct people when they use the word "retarded" as an insult and I want to be involved in the world my child will be raised in...a world filled with so many different types of people. Keep on trucking sweetie. Your blog is eye-opening and thought-provoking.

Everytime someone on BloggingBaby mentions prenatal screening, embryo selection or the like, I always say "Eugenics is WRONG". With more or less detail depending on my mood or the post. Who am I to decide who should be born and who should die; I choose neither to be the judge nor the judged. (BTW I do not think that abortion is wrong; I do not think women should be forced to carry a pregnancy to term. I do think it is wrong to abort because of disablity)

I also defend the "different": the 60 year old moms, the same-sex parents, the families with *gasp* more than three children. What other people do that does not effect me is none of my business. You wanna marry someone of the same gender, have fun. You wanna have kids really late or really early in life, whatever. You want to beat your spouse, ok now we have a problem. You want to have kids and neglect them, BIG problem.

I come here because we share a city, because we are both parents. If I stumbled across a blog for a T21 parent who I enjoyed I would hang out there. However I have this weird obsession with BloggingBaby. I don't really like half the writers, and most of the writers I do like are much better on their own blogs because the are less watery. I wish if they would cover more issues like the one's you describe. I care just as much for a mom who is told not to breastfeed, one who was yelled at for bottle feeding, or one who face difficulties because their child is "different". (However I could really care less what K-Fed did, and yet I read BloggingBaby)

I guess the problem is that you generally just go from blog to blog via links in posts and generally "normal" people read "normal people" blogs. Maybe if more moms of "different" children hung out on BloggingBaby there would be different kids of stories, or at least different I might find them from links.

I would advocate more, and read more, if it smacked me in the face. I think, for me, if there were a site (like BloggingBaby ) with multiple posters from parents with differently "different" children I would definitly read it. But to check in on the T21 circle, CP circle, autism, etc, etc I don't have time for half my favourite blogs now (or when I have time my fav blogs don't have new posts )

Anyway I hope this makes some sense, I couldn't seem to pick one point and go with it. If you want to e-mail me go ahead, maybe next time I will manage to be lucid.

Wow, the good comments keep coming--thanks everyone. I really appreciate. I hope you all know (not that you'll come back to read my reply, but anyway) that I'm hoping to be able to contact you later with specific questions. Thanks!

Jenny, thank you, and welcome. :)

Brenda, thank you. I've been wondering too how much link surfing contributes to it--it's definitely something to explore. And you might enjoy a blog called "Postcards from Holland" that is linked under "where my head is at" on the left.

This is a great post! I believe that people are drawn to what is familiar, whether it be in real life or in blogs. I tend to read more blogs by moms with "special needs" kids because I can relate to their stories. My friends (and they are awesome and supportive) can't really understand my experience. Schooling, social life and day to day stuff is a whole different animal in my home. I don't read too many blogs by moms with "typical" kids. Ugh - I cringe writing that phrase. Their posts just don't tend to click with me because I can't identify! Maybe I am seeking support, maybe I am isolating myself, but these are the posts that make me laugh and help to keep me going. I came over here from Moreena's blog. Thanks! Heather

I have been mulling this over since you wrote, and hoping for some time for a thoughtful response that I have yet to get. I do want to say that I blog in part to get out there that I am no different than any other mom. I am not stronger, I am not more patient, and just because I got a special reminder of how my daughter is a miracle doesn't mean I remember that every second of every day. I like to read the blogs of moms with special needs kids because I like to hear how they solve their particular unique problems, such as potty-training a kid who can't walk (anyone have any ideas there?), but I like to read about families with kids that like to read, or kids that don't want to eat meat or vegetables, because I have just as much in common with them as I do with you. The bulk of my day is not spent immersed in her differences.

Thank you, Heather, and welcome.

Carrie, thank you. I'm going to expand on your comment in a little while (like probably a few weeks) because you really hit on a lot of what I am trying to say.

It has taken me all weekend to focus my thoughts enough respond to your post. I just returned from a family reunion. Happy children racing in packs around their parents.

As usual, I watched them and found myself comparing them to my own my own happy child. I love my family, but even they have no clue about how different we are and our life and what we go through on a daily basis. They just don't get it.

I lurk around blogs, because people in this sector of the world really do get it. I also filter what I share of my daughter's history with friends and strangers, because this world can be a tough place. I also get tired of explaining our situation and listening to well meaning reassurances that 'it will all work out in the end.'

Thanks for the posting. I'm interested in your additional thoughts.

Oh, that reminds me... I wanted to invite you to join: http://mamablogstoronto.blogspot.com/

Anyone can post (so they say, I haven't posted yet). Maybe you would like to introduce yourself? (I promise we aren't creepy stalkers, some of us have even met IRL.)

Thank you, Eva.

Brenda, I've lurked on it--I haven't tried to post yet either. Thanks for the invite. :)

I wanted to take just a moment to present the prespective of a "Not Mom". Definitely NOT a here be dragons; but this is my first ever comment on any blog. I'm not a Mom; however I am an Aunt and I do enjoy my time with Mom's and children. So, while I enjoy the graphic, I do think there is a small intersection between Not Mom and Mom's.

I found this blog recently, and have bookmarked to drop by and visit. Why? Because the writing is excellent, but more importantly to me, I find the topics interesting. I too read a lot, and I enjoy reading that makes me stop, think and process with the result that I gain something. Perhaps a bit of well roundedness, a new way of seeing; or even a few new words of vocabulary.

Good luck and have a ton of fun with your talk! Have you done much public speaking? Consider bringing along a small pic of Francis to take to the podium with you. Glancing down at her pic should help keep you grounded and calm. And bring a smile to your face and voice.

I just found this entry and couldn't agree more. My 9 month old daughter has a rare-ish form of epilepsy that has led to developmental delays and possible cognitive and speech delays (remains to be seen). I wrote a blog during my infertility days and while I never had a ton of readers, I did have a good amount of people who followed my story and cheered me on. When Julia was first diagnosed, I had a lot of sympathetic comments and emails. Now that we're a good 6 months away from that original diagnosis, the only ones who seem to comment (I don't know who's actually reading) are moms of other SN kids. Whether it's because people feel like they can't relate to me anymore, I don't know. It hurts though.

I am having a mixed reaction to your posting. Up until you started discussing how moms who have a "normal" child wouldn't be offended by the word "retard" being used overzeaoulously in the media world I understood you and empathized and agreed. You've left out a large population of mothers- one which I belong in- in your discussion. Both my husband and I are trained educators and he is a special educator. I think most teachers and professionals in the education world disdain that word and disapprove of it's overuse. The unfortunate reality is that as much as I have ever given dirty looks or shared my disapproval to friends or random people who use retard loosely, the fact that we all have free will and freedom of thought prevents those who have used the word to really sit down and think about why they chose to utter it. Many of those people may feel bad after they've said it but just not care to make it known because it's not as funny if they take it back. That's the bottom line I think- being serious kills the humor that was intended (however ill-attained it was) and most people these days are surrounded by enough unhappiness (in life and in the world happenings) that they'd rather enjoy a laugh no matter what words are used than not at all. I am not excusing their behavior, but, in the world surrounding us, most people are not educated enough to speak and simultaniously attend to ignoring words that really never should be used in every day conversations.
The bottom line is that most people probably agree with you and dislike the use of the word, but, as much as we try to stop it's misuse, it won't work unless everyone in the world becomes as educated as you and I... which is a far better goal to encourage.

I am very late to this party, but I still want to chime in.

1) I do think that the lack of overlap goes both ways. My first daughter has T21, and my second daughter is developing typically. After my second daughter was born, I posted a lot about her because life with a newborn can be all-consuming like that. (Of course, I continue to post a great deal about my first daughter, too, but there's more overlap between my posts and typical blogging mama posts now.)

My readership has dropped this summer/fall, and I haven't changed my frequency or style of writing. I can't prove that it's parents of kids with disabilities not wanting to read yet another typical mama blog, but I suspect it sometimes.

2) Replying to other comments, Amy said (and Jennifer echoed something like) "I don't want to rub other moms' noses in the fact that my children are mostly normal." Which, all by itself, is condescending. We mothers of children with disabilities are quite aware of typically developing children(!). We seek out similarities between other children and our own, others' parenting experiences and our own. Those who are afraid to mention their typically developing children around us seem to be operating under the assumption that we're so sad with our lot in life, that there's something terribly, tragically *wrong* with our children, that we're jealous of theirs.

Sure, I wish Ellie were going to have an easier time of it. But I wouldn't trade her for the world.

Several other respondants said that they don't look for this, or that, they just look for voices that sound like them, or voices they like, or whatever.

We all do this to some extent, but there's danger in making choices without thinking critically about them. It's easy to surround ourselves exclusively with others like ourselves, just because it's "comfortable."

I absolutely agree. Thinking critically about our own choices is difficult, but it's necessary.