Manifesto for 40 - November 11, 2013

This piece originally appeared at quartersmagazine.com but it was edited and also they don't believe in the serial comma so I am reposting it here the way I want it to appear because this is my blog.

My 40^th birthday is this week. I’m still having a hard time wrapping my head around the fact that soon I will be an age that as a kid I clearly remember thinking was “old”—yet I don’t feel old at all. It doesn’t actually matter how I feel, though. It’s happening and alas, there’s nothing I can do to stop it. All I can do is embrace it as thoroughly and as happily as I can manage.

Interestingly, what am I finding as I move into this next phase of my life is this: My tolerance for bullshit is dwindling…dwindling…nearly gone.

In the past, I’d let stress about inconsequential things eat away at me. Mostly regarding situations that happened on the Internet—someone breaking rules in a forum, someone leaving a nasty comment on an otherwise interesting article, someone spreading misinformation or half-truths of some sort—but in relation to things that happened offline as well.

But now? Now that I’m hitting the big four-oh? Now I say FUCK ALL OF THAT. Life is too short and too full of things that matter, good and bad, to get wrapped up in these petty concerns. I have big plans – plans to get over all of the nonsense and move right on to the things that matter, the things that are important, and the things that I can really change. For example…

There’s a comment on an article on the Internet that is ignorant or spreading misinformation? Close the browser, go for a run, drink a glass of water, do something other than sit on my ass on my comfy couch and get worked up about something that either does not matter or that I truly do not have the power to change.

Someone on the Internet is breaking the rules somehow, with self promotion or referral links or simple asshattery in a safe zone? I’m not a moderator anywhere online at the moment, so it’s time to step away from the computer completely if I’m upset about something as inconsequential as this. Maybe I should read one of those hundreds of books around my house, maybe?

I’m keeping someone in my life who always makes me feel bad about myself? It’s time to reevaluate that relationship and possibly take a break so that all parties involved can regroup. But spending energy trying to fix an energy leak? I don’t really have time for that right now.

A project I really want to start – business or hobby - is making me whine like my six-year-old daughter whines? No. I need to figure out how to make things happen now, rather than wasting time on the what ifs and the fears. I have to stop worrying about potential failures and just make things happen. At this point in my life, a Greek chorus of cheerleaders isn’t going to appear from the mists to sing a song of the stupidity in my ideas. Either my ideas are sound and will work or they’re not and I’ll try something else.

It’s not easy to let things go but it feels like it’s time, both because of the calendar and because of how I’m feeling. I’m raising a child with a disability. I’m a freelancer married to a freelancer. I’m figuring out big things like where religion fits into my life and whether or not we’ll buy a house. If a jerk in another state wants to feel special by asserting himself anonymously online or if someone makes me feel 2 feet tall, it’s time to raise a glass in that general direction and move on by.

Two Things to Get Over in 2013

Nobody reads my blog. This is not one of the two things I need to get over, it's a fact I have accepted. I can see who is clicking and why and from where. The post that gets the most traffic is a two-year-old post I made about a product I liked (still like) and apparently I'm the only person on the Intertubes who ever reviewed it. And sometimes friends will check in, sometimes people want to enter a contest I'm hosting, sometimes a blog hop will get a few curious eyes who never stay.

But mostly I'm in this tiny corner of the web talking to myself.

So here I will share two things I want to get over in 2013, the year I'm going to turn 40 (but not for a while). They were supposed to be part of a zine I was supposed to publish supposedly. I suppose that's part of this too - letting things go out of my head and into the world. I can always make a zine too...

1. When I was in something like 7th grade, I wanted to be a writer. I wanted to be a writer with my whole heart. And I wrote and I wrote and I wrote. And then my English teacher - who I vaguely remember as being also-the-gym-teacher but I might be wrong? - he read this piece from the newspaper that was a bit over the top and that contained the phrase "Please God! Save us from this frozen hell!" And then he used that phrase to describe something I wrote a few weeks later - implying that I too was crazy over the top ridiculous and should shut up, or at least that's how I took it. And all of the passion and flowery writing that I wanted to do just kind of fell on the floor. Splat. I mean, it didn't stop me from writing - it didn't stop me from writing good and bad poetry in high school, it didn't stop me from writing sad poetry in college, it didn't stop me from writing...whatever it was I was writing, poetry-wise, in grad school. But it changed me on some molecular level. I have a few people (it's a secret) who have styles I admire desperately and who I want to emulate (I probably am writing this paragraph by slipping into their voices, actually) and in 2013 I might actually do that again. Let go. Open up. Be saved from that frozen hell. Not care what anyone thinks. I just want someone to read what I have to say.

2. When I was a kid, I remember overhearing my mother on the phone. She was complaining to someone. She had been interviewed for a newspaper article and apparently they'd promised that she would be anonymous, but her complaint was that the author of the piece described her so perfectly that "everyone" would immediately recognize her without her name attached. Somehow this was devastating. I don't remember what she was talking about, but I definitely took to heart that you're not supposed to attach your name to things. To beliefs. To ideas. Stay anonymous. Stay quiet. Stay out of the spotlight. Again, this didn't necessarily stop me at all times, but sometimes I pull back. I don't send my writing out to be read by anyone. I stay quiet. I don't comment. I don't want someone to read my name and those words attached. It's ridiculous. I'm going to try to get over it in 2013.

If you actually do read this, leave a comment saying hello, would you? Even if you stumbled on this post and never plan to come back. (Though not if you're a spammer. I hate spammers and I don't approve their comments so don't even try it, jerkface.)

2013 is going to be the year of experimenting with this blog, I think. Getting over my fear of flowery language, of posting too often, and of saying THIS IS MINE, THIS IS ME.

Inclusion means the world to me - February 2, 2012

When I was a kid, I remember occasionally seeing the special ed class (that's what I think we called it - I don't even remember - something absolutely not PC, I'm sure) walking around the school or going into their own classroom. It was not only a classroom of just "those" kids, but it was a classroom that was isolated from the rest of the school in location as well. I didn't know the kids individually, I saw them occasionally and was friendly toward them, that was pretty much it. I don't know what sorts of disabilities or abilities the kids had. It's just how it was. I probably lumped them all into a single category and that was that. Forgive me!

Fast-forward all these years later, and me with my own child with special needs, and I can't imagine a world without inclusion classes and I can barely wrap my head around the idea that there are places where kids are still isolated or where inclusion is fought or...any number of things. I can't imagine that someone would see my kid with CP and think she was EXACTLY THE SAME as a kid with autism or a kid with spina bifida or a kid with Prader-Willi or a kid with Down syndrome...that if you have special needs, that's it, that's your BIG HONKING LABEL and you'll all be together doing everything the same. Ugh. No way. Every kid is an individual and every kid's disability is addressed specifically.

It means a lot to me that my daughter is seen by her peers as just one of the gang. One of their friends. Her classmates and other kids in the school in general know her name and say hello - and it's not in a condescending or patronizing way. They just see their pal and they greet her. She has the ability to flourish in this setting. She wrote her name alongside the other kids (and really, she wrote it with four recognizable letters - it looked as good as some of the other kids' work!). She reads with them, she sings with them. Sometimes she's pulled out for various reasons or therapies or special programs, but she's a participant in THIS CLASSROOM. (Hell, I was pulled out of class for speech therapy - I had a pretty severe ch/sh/j type lisp for years - and for therapy of the 70s hippy dippy helping-me-with-issues kind. So there.)

She's only four. She's still in preschool. We have so much to learn. I have so much to learn. I know inclusion doesn't work for every kid, every family, every school system. What I know as well is that RIGHT NOW it is working for us and I am so thankful for that as we take it one day at a time and hope that next year will be as good as this year, that in four years we'll be as happy about it as we are now, and so on.

Right now some of my kid's friends have IEPs and some don't. Some can talk and some can't. Some are loud and some are quiet. Her friends think her walker is cool, her "shoes" (her SMOs) are neat (one kid asked why she had roller skates - they DO look like skates when they're peeking out of her bag...). I know...I know this will not last forever. I know we may be in for it one day. I just hope that by laying the foundation NOW in PRESCHOOL with INCLUSION that maybe by the time everyone reaches that age of nastiness and confusion and all that awfulness...maybe my kid will have a chance on some semblance of a level playing field. At least we've got a head start, right?

It frustrates me when people who know nothing about inclusion say things about it. That happened to me very recently (ahem...very....very recently) and it bothered me. Because I don't ever want anyone to think that my child is or should be shut away, pushed aside, or separated. So don't imply that my kid has been shuffled into a pretend/in-name-only inclusion class or that she's not in the type of place that she is. I'm being vague rantypants here because I am still stinging at something someone said rather recently (not to me directly - the person didn't likely think that anyone would actually have information to dispute their so-called facts). Just...don't do that. Or I will snarl at you.

So...here's to continued excellence with inclusion for my kid for as long as it can work for her and for us. I hope that's for her entire school career and beyond. She's a smart cookie so, for now, I believe that's how it will be.



(I'm trying out the CP Connection - if you've clicked over to here, hi. I hope that I did this right!)

That's Not Very Reassuring - January 6, 2012

In my travels around the Internet, I land a few times a day in various parenting forums. They are mostly general parenting forums, not special-needs parenting forums, and so of course there's a different angle to them and I don't always find the voices I need there. But, well, they're part of a habit from pregnancy, they're entertaining at times (and dramalicious at times), and they have their uses.

But there's one common thing I see that happens all the time.

A concerned mother (or father, but really, usually it's a mom and I'm going to use "mother" from here on in for this post) writes about her child not meeting a milestone. I think it goes with the territory of being a mother - worry. Worry that your kid isn't doing things right or at the right time or whatever. Books and email alerts tell you "This week, your child will be tap dancing!" and your kid is just starting to crawl. That sort of thing. I worry, you worry, we all worry. The Internet is such a blessing and a curse when you worry...

So the mother writes about her worry and looks for reassurance and advice. Sometimes it's obvious that she's worrying for nothing, more or less - she's worried that her six month old isn't walking yet, for example - and sometimes it's not quite so obvious or there may even be a genuine cause for concern.

And what are the most common replies? "My kid/my neighbor's kid/this kid I read about on the Internet was just like yours. And he did [that thing] all of a sudden one morning/the week after his mom posted/at some random date, and now he is TOTALLY NORMAL and PERFECTLY FINE."

Allow me to whisper something to you. Lean in. Lean in close.

THAT IS NOT HELPFUL.

I know it seems like it is. I probably have said similar things to people in my lifetime as well. But here's why it's not helpful.

Because sometimes the child in question does NOT wake up one morning and go from not walking at all to running across the room.

Because sometimes the child in question does NOT suddenly say "Mother, may I have a glass of your finest apple juice?" after being silent for years because she just had nothing to say.

Because sometimes things just don't magically happen. And because "normal" is arbitrary anyway.

This is a hot button for me because it happened to me. I posted when my daughter was being recommended for early intervention services/wasn't sitting unassisted at around nine months. I was scared and I was confused and I didn't understand at all what was going on, and I was looking for...something... And while I bet if I dig back and find that post, I will find that there WERE people who were positive or helpful, I remember that most of what I got was a variation on the above or people saying "Wait, why are you pursuing EI? It's too soon for that, she's within the range of NORMAL, she'll probably start doing it tomorrow and be PERFECTLY FINE. Just stick her on a Boppy/do these exercises!" (And one person who informed me I was just pushing my kid too hard because my mother pushed me. Cute.)

And so I waited (I mean, in my head - we still started therapy) for some magical day to come when she'd snap out of it, grow out of it, do whatever it was, and become NORMAL because all those people said she would! Instead, I was crushed because I didn't get that fairy tale ending that everyone around me was assuring me would come if I was just patient and stopped worrying. I don't remember if anyone said to me "She may need some assistance, and that is OK. She's still your beautiful, amazing kid, and who the hell wants NORMAL anyway?"

If a mother is worried about her child, I personally think that validating the worry (if nothing else, as a universal) and acknowledging that being a parent is hard is a better way to go. It is not helpful to make the mother feel that she simply is a worrywart and that everything is fine because that may also deter her from seeking help or make her feel that there is SOMETHING WRONG with seeking help or SOMETHING WRONG with her amazing, beautiful kid who is just not quite hitting the milestones that the books talk about in the right order. And sometimes with a little bit of help or therapy, the kid in question WILL start to progress and even maybe catch up - or maybe not, and then the family will learn how to deal with whatever they have to deal with, however they have to deal with it, whether that's by blogging or finding new forums or just standing in a field screaming into the wind or...whatever it may be.

I get that sometimes hearing positive stories is what someone wants, needs, or finds helpful. But presenting this idea that things just magically, eventually resolve themselves and that NORMAL IS THE END GOAL OR ELSE really has the potential to make someone feel LIKE TOTAL SHIT when the truth is that it's not quite that simple. There's giving someone hope and then there's...this, which to me is just too much of an extreme.

I'm still working this whole thing out in my own head, and I may revisit this topic again in the future. The disclaimers are all in place - my opinion, my blog, can't speak for everyone, etc. I just really needed to vent about this. I hope you understand and are gentle with me.

Asking a Question Using a Longwinded Metaphor (Special Needs Parent Post) - September 7, 2011

What do you do when life throws you a roadblock? Not even necessarily a big one. Not something dire. Just that you finally think you've found a way to make your car go along a bumpy road and navigate the twists and turns and then there's a tree that has fallen in the middle of your path. What do you do when you really just want to turn your car around and go home (but you can't) or you want to sit in your car and cry (but really, you can't) or you want to make someone make all the trees in the world vanish (but seriously, you can't)? But your car still goes - in fact, it's really going well lately! - and the sun is shining, it's not even raining, and if you could just get past that fucking tree maybe you'd have a few minutes where the right song would come on the radio and you could sing along in harmony....

Right now I'm getting myself ready to climb out of the car and go to the store and search for just the right saw to chop down the damn tree so I can continue on my way.

And maybe someday I'll decide to talk about more than cars and trees and will instead tell you about my beautiful, smart, complicated daughter and how I am wondering when I'm going to figure this all out, because as I'm sure nobody is surprised and everyone can understand, just when I thought I had figured things out, something new came along.

[Since occasionally people who know me in real life and/or are related to me do read my blog, I feel the need to add that there is nothing WRONG and nobody is sick and there is nothing to be concerned about. I am just venting.]

Your Choices Are Valid - May 19, 2011

I'll keep this short and sweet.

You - you, reading this right now, if you are female and in charge of some children - are very likely not the worst mother in the world, the most terrible mother in the world, or the biggest meaniepants mother in the world. I suspect that if you are reading this, you are probably a mother who loves her children deeply and dearly. And to that end, you make choices that reflect that love. Maybe the choices were very difficult. Maybe the choices were easy. Maybe the choices led to further complicated decisions. Maybe I don't agree with your choices. (I'm judgy! I'm sorry! But in the end who the hell am I anyway?) Maybe your mother-in-law doesn't agree with your choices. But in the end, your choices are made with love and concern. I know that, you know that. Own your choices. Stop talking about how you're a bad mom and worrying about random strangers and close personal family friends judging you and instead celebrate that you are a good mom. Start doing that today, OK?

I'll try to take my own advice too. Because I sure need to. The judging isn't going to go away - internally or externally. But today I'm going to try to make it all about LOVE.

I sound goopy. I've got to go yell at my cat for sitting on the kitchen table again...

Assumptions - May 1, 2011

On Wednesday, after a week-long battle with some sort of sinus/allergy/yuck nonsense, my sense of smell went poof. I didn't realize it was gone until I went to eat a REALLY HEALTHY SNACK [ahem, buffalo-wing flavored pretzel crisps] and thought, wow, this tastes super salty but it doesn't taste like it's supposed to. Suddenly it dawned on me that I couldn't smell even though I could breathe through my nose. I spent the next few hours freaking out, putting my face in a bag of coffee (nothing) and smelling my various candles and soaps (nada) and Googling (shockingly reassuring). When it didn't return by Friday morning (with brief moments where stuff did get through), I zipped over to the doctor, where I was reassured that it was nothing, was related to inflammation, and that it would improve soon. Thankfully it has.

It got me thinking about assumptions and taking things for granted. I have a nose, therefore I can smell. Suddenly it was gone. There are people who are born without the ability to smell and others who can't for whatever reason. And it's freaky - I couldn't smell my kid, I couldn't smell my food, I didn't know if something was burning or if the milk had gone bad. It's a huge deal.

People assume that all kids can do things. Because most kids can. Human beings have legs, feet, we walk upright. We are born, at around six months or so we sit up, at around a year or so we walk. I remember when I was still coming to terms with my daughter's diagnosis, a friend with a new baby (her second) noted, well, in three more months the baby will be sitting up and things will be easier... I used to think those milestones just magically happened too. And sometimes...they don't.

I try not to assume anything anymore. I try. I try really, really hard. When my sense of smell left, I didn't assume it would come back, and I didn't assume I would always have it. Now that I can sort of smell again, I breathe the spring air in deeply and enjoy what I smell in it. Now that my daughter is on the cusp of walking and talking - she gets her SMOs tomorrow! - I revel in these little things that she now can do. I don't know, though, if I *assume* she will be able to walk and talk. I trust that she will be able to after a long struggle, I just don't take it for granted that it will happen and I will be SO EXCITED when it does, rather than blase about her doing what human beings just...do. Perhaps this is why I get frustrated by those who sigh "Oh no, my 10-month old is pulling to standing. I am SOOOO in TROUBLE." Because they assume - likely rightfully - that their kid will then cruise and then stand and then walk. It's not a luxury I've ever had. And those who tell me to be careful what I wish for when I wish my child could talk clearly? Yeah. No. I wasn't able to assume she'd start talking and that by almost-four she'd be speaking full understandable sentences. I WANT her to talk now. And sometimes one assumes that life is a straight line and then...it's not. You think your kid is X and your kid turns out to be Y. It's not always about special needs or having an issue at birth. It's about life being unpredictable.

This is sort of a mixed up entry, and I'm not sure what I'm trying to say. But isn't that the beauty of blogging? Plus, I'm hushing that voice by pushing "Publish Post." If this post doesn't fully make sense, my next one will. I think. I hope.

I Don't Fit In (Special Needs Mom post) - February 1, 2011

There are lots and lots of support groups for parents of children with special needs. There are groups online and there are groups offline. There are blogs and there are message boards. There are get togethers and there are share groups. Some are general groups, some have a focus (in my case, a focus on parents of kids with cerebral palsy). Lots and lots of options.

And I don't feel like I fit in with most of them. Or, well, I should be less pessimistic - I haven't found my tribe yet. Here's how I've felt after participating in certain groups on or offline. (For the record, it is rarely all of these at once, and I don't feel this way within every single group/gathering I've joined. I just wanted to collect this all in one big obnoxious post)...

1. I'm too loudmouthy. Uh...yeah. I'm always the one raising my hand or saying something or talking about research or something. And as a corollary to this, I don't take it well when someone starts telling me why I should or shouldn't do something, what I should or shouldn't try, why my choices are invalid, or why they wouldn't make those same choices because mine are wrong. See #2...
2. I'm too crunchy. I had a natural birth, I breastfed my daughter (I still do...), I never supplemented, I waited until 6 months to start solids, we co-sleep, I carried her in a mei tai or an ErgoBaby carrier until she simply refused to be in one (and I still hate the stroller but since she can't walk, it's a necessity). Many times children with special needs simply cannot do these things for medical reasons, and I get that. It's not a judgment on anyone else that I did or do these things - I do what I do, you do what you do, and I respect that, particularly inside the boundaries of this community we share. But sometimes it feels that when it comes up that I do these things, it's taken as a judgment when it's not, so I have to keep quiet about what I do and just smile and nod a lot. And sometimes I want to talk about the challenges and struggles within these choices but have a hard time finding someone who understands.
3. My kid isn't disabled enough. She's not hospitalized, she's not on medication, she can walk with assistance, she has some words and signs, her prognosis is that she'll walk and talk and do all sorts of things. She's also hypotonic (many children with CP are hypertonic), she wasn't a preemie, she didn't have complications at birth, we didn't know she had any issues until she was 6 months old, she didn't get a diagnosis until she was over a year old. I rarely find people who can identify with my story - a story I still am baffled by and a story I really do want to share. 
4. My kid isn't on the autism spectrum (at least as far as I know!). Some of the general support groups I've found are made up mostly of parents with kids on the autism spectrum. That's fine, and we have many things to learn from one another and many things that overlap, but the issues we face can also be very different. 
5. I'm not the right flavor of religion. I encounter a lot of religious people in the special needs universe. That is fine, I have friends who believe a wide range of things from agnostic to very faithful (or whatever you call it). I'm Jewish (though not as observant right now as I would like to be), but I also have issues with my faith and my child. I'm just not looking for answers within my religion right now.

I know my tribe is out there. I've read essays by parents with whom I identify, I've met people on occasion on and offline, and I keep trying and trying. I have friends who are nothing like me and who I still like and share with. But I want to find where I fit in within this community. I'm sure someday I will.

The usual disclaimers apply. This is just about me and my experiences. I reserve the right to change my mind about any of the above at the drop of a hat. I'm just getting a few things out of my system. You don't have to like me or agree with me. Sometimes I don't fit in because I'm being stubborn or I'm a brat. Sometimes I find someone who clashes with all five of the above things and we still find common ground and work well together. I reserve the right to not approve your comment for whatever reason. I like chocolate cake.

It Doesn't Go Away - (Special Needs Mom Post) - January 29, 2011

I want to believe the best of people. When someone first gets the diagnosis for his/her special needs kid, whether it's at birth or later (like...me!), most people probably at least try to be supportive, right? I mean, there's always SOMEONE being jerky or unhelpful, but I think for the most part people are good and are there for you or bring you food or listen to you cry and vent and cheer. The jerky ones fall away quickly (or should!).

But the thing is, a week, a month, a year, ten years after that moment, the diagnosis doesn't go away. And yet, I'm thinking sometimes people think that the parent should have moved on and stopped talking about it and started...getting over it.

Or maybe it's just me. It's probably just me. Let's talk about me, shall we?

My kid will always have cerebral palsy. Even when she walks unassisted and talks (because she will!), she'll have it. It will be a part of her life and of my life forever. I will always have stories about it. Hearing someone laugh about "will this [innocuous thing] cause brain damage to my fetus? tee hee!" will always strike a nerve. Listening to someone talk about their child's milestones when their child is years younger than mine and doing things mine cannot do will always sting (at least until she catches up, because catch up she will). For now, still early in our journey, things are fresh. It's been about two years since we started getting some answers - so little time and so very much. Maybe I'll feel differently in ten years or 20. But this is my current reality and there's no escaping it. Maybe someday it won't be as big of a deal in my or her day-to-day life, but it will always be there.

I can't stop talking about Being the Mom of a Special Needs Child because it is who I am now and who I always will be. I can't get over it or get past it or move on. I can cheer on my kid and her amazing accomplishments day by day, moment by moment. I can support her and love her and give her strength. But this isn't a topic of conversation that's going away and it's not a set of emotions that I'm going to ever move on from, even if they fade or I learn to deal with them. It's not finite.

Please. Be kind to your friends with special needs children. Watch your language. Listen to their stories. Evaluate how they might react to your own worries, hopes, or fears.  Don't hide things, just be gentle when gentleness is needed. But above all - please please please NEVER ASSUME ANYTHING. Just because I say X doesn't mean anything to anyone but me. Everyone is different. I can only speak for myself - but I know that assumptions almost always are hurtful.

Want to read a great book? Check out My Baby Rides the Short Bus - an incredible collection of essays by parents of children with a wide range of special needs and conditions.

General disclaimer: Posts like this are all about me and my perceptions of my world and are not intended to be used as a universal guide. I change my mind and my situation changes on a constant and steady basis. I reserve the right to change my mind, to write in the future that I feel differently, or to disagree with you while we find some common ground. I'm learning to be more open and this is a step.

Five Things You Probably Shouldn't Say to the Parent of a Kid with Special Needs - January 18, 2011

Five Things You Probably Shouldn't Say to the Parent of a Kid with Special Needs

(or, well, five things I'd rather you not say to me)
(and hey, don't all kids have special needs somehow? because they're KIDS and stuff?)
(there was this camp in my town that was for "exceptional children" and I was always like "hey, I'm exceptional too! I want to go!" and as I grew up I thought, that's an odd euphemism)
(I digress)

1. How did it happen?
In our case, I actually don't know. But does it matter? It happened, and if I'm not volunteering the information, then I don't want to get into it. On the other hand, if I like you, I'll probably tell you the story and then you'll know. But the implication that something OMG HAPPENED irks me - particularly when the impression I get is that you're asking so you can somehow prevent it from happening to your kid and/or feel better that it didn't. At the very least, don't let this be the first thing you ask me.
2. I couldn't do what you do/How do you do it?
I don't know. I just do. This is my kid. How do you deal with a kid who runs away from you in a parking lot? A kid who talks back to you? A kid who suddenly won't stop saying your favorite curse word? You just do, but I have no idea how you do it. If you're a parent, you do what you have to do, no matter what your kid is like. You have good days and bad days and days when you want to hop a plane to a warm place with foofy drinks that doesn't allow children.
3. Is she walking/talking/reading/potty trained/whatevering yet?
If I haven't volunteered this information, please don't ask. It just feels like a stressful or loaded question, particularly if it comes right after I tell you some of the amazing things she now can do. She'll do things in her own time, and I'll be yelling from mountaintops when she does them.
4. Is she mentally challenged?
Yes, someone really asked me this. Yes, I was incredibly offended and found it incredibly rude. It's none of your damn business and WHY DOES IT MATTER TO YOU? Again, in our case, it's not true and in fact my kid is super-duper smart (says her proud mama), but what if she was a bit behind or had some learning disabilities? I'll have either said so or will have left it unsaid. (And sometimes I do make sure to say up front that she's smart and understands just what you're saying because it's important to me that you know this, but that's me and my baggage and my issues.)
5. *silence*
Look, it's OK. Really. If I've brought it up when she's not with me, it's because I'm stating a fact. If I've brought it up when she's with me, it's just to explain why I'm carrying her or why she's using her walker or why she's screaming at you when all you did was say hello. Don't walk away from me, don't stop talking to me, and don't be afraid to ask honest, real questions. I'll answer them, even if the top four things seem like I won't. I'd rather have you ask then not ask. But it breaks my heart into a million pieces when you just walk away. Say "I'm not sure what to say" if that's all you have - I can work with that.

Oh and a bonus item - don't assume you know what her diagnosis is. I've given up on trying to figure out why kid X has a wheelchair and kid Y is nonverbal. It could be a million different things and it is not necessarily the hot diagnosis of the decade, OK?

Wee disclaimer: This is really not a universal type of list, it's all about me me me and some specific incidents that happened. We're all different, I just wanted to get some things off my chest. Thanks!