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.

Calm Before the Storm (er, the first day of school) - July 29, 2013

I thought I was ready for this. I really did. My kid has been going to "school" of sorts since she was three. She was enrolled in preschool for two years and then Georgia pre-K for a year, and our pre-K program is just like what kindergarten was for me when I was little. Very academic and structured (and fun!).

We've had IEP meetings for three years, we've dealt with people getting used to her walker and talker, we've dealt with uncooperative people and warm and wonderful people.

But yesterday at a welcome back social, I started to realize how not ready I am.

My daughter starts kindergarten on Thursday, August 1. (Yes, we start a bit early. We're on a 6-week-on 1-week-off schedule, so by September we already have a vacation. I do not love this cycle nor schedule but it is what it is and I love our school system so this is something that I have to accept.)

Brand new school. Brand new teachers, staff, paras, therapists. A new building with stairs to navigate (and an elevator - and she did fine on the stairs when she went with classmates for a no-parents-allowed school tour, but still). A new schedule. A new everything. Starting from scratch.

Did the new teacher read her IEP yet?
Did the staff set up a meeting with the rep from the talker company yet?
Is there a new physical therapist all set and ready to go?
Who will carry her talker?
Who will make sure she gets her special (IEP-mandated) mid-morning snack?
How exactly will she get to that tricky inaccessible-until-you're-on-it playground?
Will they understand just how smart she is and let her express that while also managing her outbursts?
Will there be someone to explain to this entire population of children that my daughter is both different and the same?
What if a third grader pushes her in the hall? What if a new classmate makes fun of how she talks? (Luckily she is in not only an inclusion class but also a class with four or five kids who have known her since she started preschool. I can only hope that they will help normalize a little girl with a green walker and talker.)
What if she cries? What if she has an accident? What if what if what if?

Eventually I will have to let go. (Eventually means Friday, I have a feeling.) We live so close to the school that I can see it out my window, and I'm not sure how I will manage the desire to run over at lunchtime to check on her. The obsessive checking of my phone to make sure nobody has called. The worrying.

Don't get me wrong. I am excited and thrilled and over the moon that my daughter is starting kindergarten. She's going to learn so many new things and make so many new friends. She's a really resilient kid, and she's incredibly friendly and funny and she has a way of charming everyone around her. Within days of starting summer camp she had the entire group wrapped around her finger (we walked in one day to her holding court at a table, cracking jokes with her talker while the kids listened and laughed).

All of her final pre-K progress reports indicated that she's essentially at the academic level she should be to enter kindergarten.

Every day she says (verbally or with her talker or signs or a combination of all three) some variation of "School? Tomorrow?"

I've updated her talker with her new teacher's name.

I may not be ready but I am fairly certain that she is.

It's going to be fine.

I won't cry that morning at the welcome breakfast for parents. I don't think...

Brief update 8/2/13: The first day of school went REALLY well! I didn't cry that much! I'm excited for the new year, and I'll have a post about everything new and exciting next week.

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.

A Semi-Kinda-Sorta Book Review: MWF Seeking BFF by Rachel Bertsche - March 1, 2012

I spent part of last weekend being both sick in bed and reading (in between helping out with the kid, of course - no sick days for mamas, especially with a kid with CP, but my husband really did largely take over yesterday when the DOOM came over me). And what was I reading? MWF Seeking BFF by Rachel Bertsche. I had read about this book...somewhere...and put it on my to-get-from-the-library list. I could REALLY identify with the idea of wanting new friends while living in a new city and not knowing where to start.

Background: I moved to Atlanta knowing just one person (and her husband and the Margarita Friday crew), and while she and I are still very close and I adore her, she lives a bit far from me and we don't see each other all that often and I stopped going to Margarita Friday once I got pregnant (and the group kind of splintered after that, though I still am in touch with several people I met through it). I've built my social circle from scratch, more or less, but lately I've still been feeling really lonely and craving that mysterious BFF-ness that Bertsche muses on throughout the book.

Now I will tell you that I finished the book thinking "Why, I'd make a PERFECT friend for Rachel!" And we do have a lot in common - agnostic Jews! writers! the magazine connection! (She worked at O, I was a Sassy intern!) I love New York so much! I love last-minute plans too! But uh...yeah, before I sent off a gushy love note (though I may have sent a love tweet) I realized that on top of the whole rather big, obvious problem of that I live in Atlanta and she lives in Chicago (a city that shows up so often in my life that I do think I'm destined to live there someday), there are other issues like my being 10 years older and having a kid with special needs and and...and about a million other things (though if she ever were visiting Atlanta, I bet we'd have fun and I'd take her to touristy stuff AND my favorite cupcake shop). What I think I really was connecting with was that Bertsche writes in a warm and engaging way that really made me WANT to be her friend. If I hadn't liked her so much from the outset, I don't know if I would've been so captivated by her quest. But I did and I was.

I am no stranger to the friend pickup. One of my close friends here became my friend because I asked her out. Seriously. I told her at a mommy-and-me-type event that I liked her purse (because I did!) and then the next week, when I saw her again, I asked her to lunch. We clicked and for a while we met up every single week for kid events followed by yapping over lunch at the same place - the waitress knew us, brought our drinks out immediately, and even gave our kids T-shirts. Both of us have crazy lives (she has a second kid now and a complicated schedule, I have therapies to coordinate and a different complicated schedule) and we don't see each other as often anymore - but for a while that tactic was successful. (I should try it again.) Other friends of mine here are also from the early days of parenthood (some I met at the new mom group when our babies were 2-6 weeks old - and happil,y even after the diagnosis, many of us stayed friends and our kids still play together) or were mutual friends of someone else or were from various other parts of my life. And there are online friends who I haven't met yet but who are local and we keep saying we'll get together (you know who you are!). But I think I need to branch out a bit. I'm feeling inspired. We'll see how it goes. I don't have the time for 52 blind dates but maybe I can finagle two or three?

On that note, however, I have known for a long time that I'm a bad judge of character. Many times in my life I've tried to cultivate a friendship that went sour in a way that I realize was always there but that I'd ignored (sometimes my fault, sometimes his/hers, sometimes both, sometimes nobody). I had very few friends as a kid and was the outcast, the bullied, the loner who was eager to please. I think I've held onto that - I want EVERYONE to like me and I don't always know how to manage that since that's just not always how it works. If that makes any sense at all.

I also am learning that just because I'm a mom and you're a mom doesn't mean we'll get along (anyone can be a mom, it just makes SOME conversations easier. Sometimes. Sometimes it actually makes things much, much worse.). Just because my kid has CP and your kid has CP (or special needs of any kind) doesn't mean we'll get along (as I noted in my last post, CP is a hugely broad term - and it's not like only certain kinds of people have kids with disabilities - I wouldn't want to be friends with certain political candidates, for example, ahem ahem). Those are two things I looked for for a while as friend criteria. If either/or is there, that's awesome (I would love more friends with kids with special needs, to be honest, and I do like my friends-who-are-moms very much, whether they were moms before, during, or after we became friends), but I can't just rely on that. Lately I've been getting along really really well with childfree people - which is a whole blog post in itself actually. Watch for it... But this all means that I don't know WHAT makes someone an ideal friend for me these days.

In any case, I'm going to try to keep my head up and my eyes open and move forward toward maybe finding one or two new friends. Or maybe I'll try to rekindle the friendships that have fallen by the wayside. Or both. I'm not sure. Something needs to change or start. That I know.

Labels (but not the bad ones) and Cerebral Palsy (but not really) - February 26, 2012

Cerebral palsy is a great big blanket term that simply means that there is damage to the brain in relation to muscle control, more or less (oh you can totally Google it, you know that). Person A can have CP and person B can have CP and they can be affected COMPLETELY DIFFERENTLY in absolutely every way. Even now, when I tell someone that my daughter has CP without her being present, I suspect they imagine a child in a wheelchair, unable to hold her head up. That's what I thought of for the longest time, and when the neurologist bluntly told us that my daughter had CP I simply couldn't understand it since she didn't look like what I thought it meant. I learned quickly. (I still think back to that moment, by the way, and I remember VERY CLEARLY how I did NOT PROCESS that statement even though I kind of expected it but was also rather convinced that surely he'd say Oh She's Totally Fine You Worrywart!...Also, he diagnosed her within like 10 minutes, and now I get that but it was like "Wait, what? You asked her "Where's mommy" and she didn't look at me because she's more interested in this office and...wait, what?) (And then I waited for the MRI before telling anyone because still...waiting and hoping...knowing that kids with CP sometimes have clear MRIs with diffuse damage that doesn't show up so the MRI wasn't really going to change what he said...and still...waiting and hoping....but I digress...)

So it turns out that my kid has the rare flavor of CP. The 5-10% of everyone flavor. Most people with CP present as spastic - stiff - hypertonic. Mine is floppy, flexible, hypotonic. (And some of her tone is apparently normal now, I think.) Just a few days ago her physical therapist, who we've been working with for about two (three?) years now and who has been in therapy for many, many years mentioned to us in an offhand way that my kid is the first one she's worked with who is "like this." No wonder my girl has stumped her PT time and time again with what she can and cannot do.

Sometimes I've wandered into support groups for CP and everyone has a fancy medical name for their condition or their child's condition (or their friend/relative/acquaintance/whatever). Spastic diplegia. Spastic quad. That sort of thing. We don't have that. Early on, an amazing developmental pediatrician (that I wish we could still see, but insurance...money...blah blah barf...) said "Just say mild. She has mild cerebral palsy. That's all." And now we don't even go to many doctors/specialists because...there's not much medically that can be done anyway. (Botox? Surgery? Won't help. At least not as far as any specialist nor my research has taken me. Just therapy. Lots and lots of therapy. And time.)

A blog post from Shasta on Outrageous Fortune shone a bit of light on my quest. Extrapyramidal. OK. Maybe it's that. My kid's damage is in her basal ganglia. That fits. But I don't see any of the random movements that the definitions I found online include - she doesn't appear to have dystonia or chorea, at least to my untrained eye. Her movements lack finesse but they always seem, to me, deliberate. She does fling her hands around, but usually it's out of frustration or annoyance or anger. When she's calm and happy, she can focus on a task, and she knows "safe hands" means to put her hands down or behind her back, and she does so with ease (when she feels like it). She can point. She has written her name a few times. She loves to draw. Maybe it's...mild...whatever that means... (After I wrote this, I asked her PT - she said that a) I was mispronouncing extrapyramidal - oops! - and b) she thinks my kid is athetoid, which I'd thought before, so we'll go with that...)

Kids with CP are all different, even when they share the exact same diagnosis and fancy words. It goes with the territory. All that is great and well and good, but I still feel like I'm no closer to figuring out what exactly is going on with my daughter. And I don't know why it matters so much to me - but it does. And I am trying to accept that perhaps I won't find out ever. Maybe she'll find out herself someday. Maybe when she's older she'll tell me she doesn't give a shit or she'll become a scientist who researches it to the Nth degree. I don't know. That's up to her. For now I just keep searching - then stopping - then searching again.

Never A Dull Moment - February 7, 2012

Ah, life. So fun, so exciting, so full of unexpected...surprises.

Yesterday, I posted a video and then I went out with my husband for a run. I use my phone to both listen to music and run the Couch to 5K app, so it was strapped to my arm. We were about 3/4 of the way through when my phone vibrated that someone was calling. I didn't recognize the number, so I didn't answer - but it was a local call (I get TONS of spam calls for the previous owner of my phone number - 6+ years ago - but those are not usually from my area code) and that made me wonder. Ah, they left a message, so I wasn't worried.

And then the phone buzzed again and it said it was her school (I have that number set to say that for THIS reason). So I stopped, ripped the phone off my arm and out of my armband, and panted a hello. It was the principal. My daughter had fallen while she was in her walker. Face first. And her partial bridge (her front four teeth) was part way out and broken. And she was "OK" but crying. Oh, and the bleeding had stopped.

So we ran straight home (no cool down for me - and no water, no shower, no breakfast) and into the car. On the way to school, I called our amazing dentist who told us to come right in. Her office is 45 minutes away but she is worth everything.

When we got to school, we found one very distraught little girl. Her partial had come fully out and was cracked in half - in exactly the spot it had cracked a few weeks ago (though not as completely that time). She had blood on her shirt and pants and she was hysterical. So off to the dentist we rushed. The end of the story is that she didn't need stitches and we are going to keep the partial out for now - possibly until her adult teeth come in, which could be in a few months or a few years.

Because, you know, it's not enough for her to have cerebral palsy, right? (The dental issues are indirectly related to her CP. Because nothing is SIMPLE EVER.)

Oy. Anyway, she's fine now - occasionally signing "hurt" and pointing to her mouth, but mostly back to her babbling, smiling self. Well, herself with those pouty puffy lips that ladies spend thousands of dollars to get...

By the way, I'm running my first 5K in March. I'd love it if you'd consider sponsoring 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!)

Pluses and Minuses for a Monday - January 23, 2012

+ My daughter's OT said he definitely notices her balance improving.
+ Therapists never blow smoke up your ass, I've found. All of the therapists we've worked with have been honest and straightforward - but always optimistic and positive about the big picture for my kid. If a therapist says s/he sees improvement, I take that as truth rather than as "oh, yeah, she's TOTALLY doing GREAT so don't worry or anything..." You know what I mean?
+ She stood up from a chair, took two steps, STOPPED, caught her balance, and took two more. Granted, I did not witness this - I never get to see the big things, she always does this for my husband - but she did it.
+ She is trying so hard to talk. Yesterday she said "Potty" very clearly. She didn't say "Bah" or even "Bay...eee?" she said "Potty." Sometimes she strings babble together with inflection, and often there are words and thoughts buried in there.

- She has more meltdowns because she's on the cusp of talking and gets frustrated even more quickly.
- She had an epic tantrum complete with kicking and screaming yesterday at a museum for - on the surface, at least - no discernible reason. One minute she was fine and happy and looking at art and talking the way she talk. She was interacting with the docents and she was pointing to various things in the art. The next she was sobbing, crying, hysterical. I think maybe it was because it was dim in certain sections (including, for a reason I don't understand, the fun playing kid section) and the lights set her off. Maybe she was overtired, though she doesn't nap anymore and so she still had six-plus hours until bedtime. I wish she could tell me.
- I wish she would nap. It would make her life just so much easier, but naps have been out the window for years and they are absolutely not coming back.

The week has gotten off to a rainy, stormy start, both inside and out. I'm hoping for improvement every day in every way.

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.

Where It Gets Confusing - January 3, 2012

I had a long talk with Julia of Kidneys and Eyes on New Year's Eve about how I keep a lot hidden, bottled up, tucked away, and certainly NOT public or shared in this blog - particularly that relating to my daughter. I have a lot of reasons for that - fear of confrontation and nastiness, not sure if my daughter's story is mine to share, a general sense of privacy, a feeling that things like this just Are Not Spoken Of, and more. But after talking to Julia and feeling tired of feeling isolated, unsupported, adrift, I've decided to start writing more about that here, at least for now.

When my daughter was just about a year old, we were given her diagnosis of cerebral palsy. Before, I held out hope that she was just a bit behind or a bit delayed and that she'd catch up on her own. After, I thought I at least had a path. "OK, so we have a name for this and a diagnosis," I figured. "We have an answer and we can move forward, and we can start therapies, and we have nowhere to go but up up up." It's how I deal with things - I compartmentalize. I put that diagnosis in a box labeled "Cerebral Palsy" and I started filling that box with things I knew, things I learned, things I understood.

What got confusing for me is that the box...well, it wasn't quite as self contained as I'd hoped. I am not even talking about the shades of grey that involve a CP diagnosis or the fact that no two people are affected in the same way or even that my child's CP is apparently of the more unusual variety. I'm talking about how I believed CP was only going to affect her muscles. But no, it affects more than that.

When we try to take her into certain stores, she starts screaming for what is absolutely a reason to her but not an obvious one to me. If she's not in school, we can't go certain places, but we also don't always know what her triggers are. She's fine in some stores that are nearly identical. She's fine in the mall.
When strangers come out of nowhere and talk to her (usually store clerks), she flips out. And attacks US.
When people stare at her, she screams. While I do not blame her, sometimes those people are genuinely being kind and/or curious rather than having malicious intentions.
She's aggressive sometimes. She gets overwhelmed easily. She rips and destroys the same books she happily and politely reads on other occasions. She bites toys. She puts small things in her mouth and laughs. She lashes out. Her brain doesn't work the way my brain works--and logically I know this, but then I get surprised or confused or frustrated all over again.

I believe she'll grow out of a lot of this. I really do. I believe that with time and maturity, some of this will calm. I believe that she has a lot of pent-up frustrations from not being able to communicate her needs easily, particularly because she is so smart (and surprising me daily with what she knows, understands, absorbs). I know that sometimes a few steps forward in one aspect is accompanied by some steps backward in another. I know what her diagnoses are not and at least I have that. Funny to look at it that way, but sometimes I do.

But it is confusing. And tricky. And right now, it is so very, very hard. There is no manual or road map, there are no answers, and every day that box I tried to make disintegrates just a bit more and the dust makes me sputter and choke.

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.]

Think Before You Speak - August 23, 2011

I had a book to return to the library, so I loaded up the kid in the stroller (though lately she usually rides her trike-with-a-handle, I was going for easy-for-mama) and we walked over. I never take her there anymore - she refuses to look at the books and instead messes with the DVD shelves and sometimes bangs on the computers. And has tantrums - often connected to my telling her we need to leave. You know, typical kid stuff (I witness similar but lower-key tantrums like hers all the time) with a bonus special-needs cherry on top. But I had to go, and we both needed the walk, so I decided to be brave.

And while there, she was surprisingly subdued but, yes, still wanted to mess with the DVD shelves. Nobody was really around, so I let her. She stood, more or less (holding on to the shelves/me mostly, but upright the whole time) and she just rearranged the DVDs over and over, pulling them out, babbling at me, putting them back in new places that sometimes made sense. She pointed out words she knew and symbols she recognized and was kind of, sort of behaving.

A woman came up to us because she too wanted to look at the DVDs. So, with a smile, as I moved out of her way, I told her that my kid - who was looking at her and smiling too but beginning the wrinkled-nose thing she does before the storm hits - was known to scream at strangers and not to take it personally. Now, when I say that, I actually mean freak out hysterically when someone looks at her too long or gets in her space. It's beyond a tantrum - and usually I or my husband bear the brunt of her freakout. Physically, I mean. It's not fun. We still haven't puzzled this one through. We're working on it. I warn people and I try to handle it.

So the woman nods and smiles and tells me how she took her two-year-old nephew to a baseball game recently, and he screamed and screamed and screamed at strangers and just at everyone. I nodded. Good, I thought, she understands.

"I was like...people are going to think something's wrong with him!" she said. And she said it twice. "They probably thought something was WRONG with him!"

I just...closed my mouth and nodded again. By this time my kid had in fact started freaking out - throaty, wild yells and grabbing at my eyes, my nose, my hair, panicking because she doesn't have the words to say whatever it is she wants to say.

And I thought, lady, you might have looked one more time and thought for one more second before you said that.

(But while I'm talking about my kid, I will also add that she now is able to get off of chairs and take two full unassisted steps from a standing position and/or stand for many seconds unassisted without wearing her SMOs - she rarely wears them for one reason or another - and she's very close to being able to get up to a stand from the downward-facing dog position. This is good stuff. This is very good stuff.)

There's no moral to this story and I don't even know what my point is, entirely. The lady left, the kid calmed down and then freaked out again when I finally pried her away from the DVDs and cried until we were halfway home, at which point I distracted her and she started talking to me again. The end.

Musing on Memes - June 9, 2011

Last night, something flickered across my Twitter feed. A 15-year-old girl dying of cancer wants to be a trending topic! Retweet! Now! Yes! And oh, the retweeting - I saw it over and over again, from famous and non-famous people alike.

Then Neil Gaiman, always the voice of reason, poked through. He noted that the girl in question actually never said anywhere on her blog that she wanted to trend on Twitter. In fact, she never mentioned Twitter at all. (I don't know how Neil found her blog, nor do I have a clue how ANYONE found it. I do sincerely hope it's real and not a hoax, by the way - I believe it's real, I just have been taken before...) The girl had a wish list, but it was devoid of Twitterage - instead she wanted to spread awareness for bone marrow donation, get an iPad, and meet a band, among other things.

But no, nobody wanted to hear that. They wanted to click retweet and have a hashtag "trend." A hashtag that didn't mention the girl's last name. A retweet without the all-important blog URL attached. Did anyone know where she was from? (She's in the UK somewhere, apparently.) Did anyone know what kind of cancer she had? No. Just hey, click and retweet! Make her happy! But...did anyone care if she was even REAL? Apparently not, as the tag did trend, and as I saw people pat themselves on the virtual back for helping to make it happen.

Martin Luther King Jr. "said" something and whoosh, it spread all over the Internet like wildfire, with the only sources being random quote pages that took their information from...misinformation. And then in situations like this, I look like the ass, because I took 5 extra seconds to dig into the story and find out what the reality is. And then I get all frustrated because TEH INTARWEBZ ARE WRONGZ! (Admittedly, it's easier to get angry at THIS sort of harmless-ish misinformation than it is to get worked up about crap like breastfeeding myths or people using the R-word willy nilly - those actually hurt...) I usually try to correct it for a few minutes and then walk away. (Sure. I really do. I swear.)

I don't know what I'm trying to say. Just venting a bit. I was about to retweet too, by the way. I'm not perfect, I would've thought "Oh, this kid will be pleased as punch to see a hashtag referencing her name!" But a famous author stopped me in my tracks and made me realize that there was more to the story, and more that the girl actually wanted, and an awareness that actually COULD be shared and spread about a cause that was actually important. And in fact once he tweeted that, he got TONS of people sharing bone marrow donation information - and THAT could hopefully make a difference.

And some people did correct the retweet, and some tweets did contain her URL. So she DID get attention and awareness spread. But the vast majority of people will never know what was behind that tag.

The Internet makes things happen so quickly. I'm hopelessly addicted and yet I wish I could just go away from it for a month. But I'd miss so much...

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.

It Only SEEMS Like I Haven't Been Blogging - April 11, 2011

No, really, I actually have been blogging. I just haven't hit "Publish Post" lately. I don't know why I'm feeling skittish again - but I am. I have a few posts that are more emotional or that discuss having a child with special needs, they're just not ready to come out just yet. But maybe soon.

Also, we just finished a very long Spring Break week of no preschool. For some, Spring Break is an exciting time full of fun and parties and perhaps even a trip. For us, it was a week with no break at all. Fewer therapy sessions (private PT and speech, but that's all). And lots of racking our brains figuring out what to do to entertain a kid with a short attention span (but what kid doesn't have a short attention span?)? It makes things oh so much more fun that I have to carry her most places and she's over 30 pounds now.

So, for example, going to the bouncy castle place one day meant me carrying her from castle to castle, trying to help her climb the biggest one (of course that's what she wanted) while neurotypical older/bigger kids raced all over us, trying to keep her from knocking other kids down or being knocked down. Playgrounds? She'll sometimes happily swing for a half hour - other times she wants to switch the swing she's in (I wish I knew why) over and over, will cry and cry until I take her out of the swing only to point back at it and sign please and go in it...lather, rinse, repeat. I envy every parent who can take his/her kid to one of these places and sit on a bench while the kid...plays.

We did find that a local "work-and-play cafe" is VERY welcoming of my kid and I plan on taking advantage of their services in the near future. A year ago I wouldn't have even considered checking it out but she IS more stable and more communicative and more social thanks to preschool, and she took to the playspace and the staff there immediately. So perhaps that will offer some relief for the summer.

The...summer...with no preschool for two long months. I can't even wrap my head around it. Camps don't work for us - she's either not disabled enough (she doesn't need medical care or nurses, she wants to be playing) or too disabled (most camp offerings). Give it a few years and we'll find our way through that dilemma, I'm sure, but this summer creeps and crawls its way toward us laughing, "How many days can you go to the pool, really?" The pool, the library, the farmers' market, walking around town...and then I'm not sure. (I have a driving phobia - isn't that CUTE? - that I'm working my way through and improving upon every single day, but it still limits some of our options.)

I didn't mean to get into all of this today. I just meant to assure you all that I'm writing, you just can't see it. You all = all...10 of you? Ah, the blogging life.

I Hab a Code in By Doze - March 21, 2011

I feel icky and sleepy thanks to the kid bringing home a lovely cold from preschool. And yet I have so much to write about...

• I need to write a full, well-thought-out review of the book Home/Birth by Arielle Greenberg and Rachel Zucker. It was a beautiful book about birth, homebirth, motherhood, and more. I owe you a better writeup than that.
• I'm the new sponsor at Blacktating! Well, my Etsy store/button biz is.  Elita is fantastic and she's bringing issues of race and breastfeeding to light when not many other sources are. Plus she's funny and bad-ass.
• I bought some adorable new art for buttons, mirrors, necklaces...I can't wait to make new things!
• I'm incredibly angry at the website Franklin Goose for ripping the rug out from under me and many other mamas who were expecting the credit we earned in the promotion last year. The promotion was poorly handled and the customer service has been terrible throughout this fiasco. Learn more here. My personal experience? I wrote a few reviews for products I knew about. I then, on their suggestion, banked the credit I accrued figuring I'd earn a bit extra and that I'd use it when the big rush for products had died down (and when more things were in stock). Just as my credit matured, I was told that all credit would be banked for the near future while FG figured out what to do. And then...poof, I was told that I couldn't use it at all. Disappointing.
• My kid is driving me crazy. Perhaps sometime this week I'll have time for a real, non-bulleted-list entry.

So It's Monday Again - March 14, 2011

• I finished two books over the weekend - Matched and On a Dollar a Day. One I liked until about 3/4 of the way through, one I didn't much like at all. I am trying to get up the passion and energy to actually write a review of one or both. In the meantime, can you guess which one I give a solid B+ to and which one was a disappointing C-/D+?
• Daylight Savings Time has begun. Surprisingly, the kid went to sleep very easily at her regular bedtime according to the clock. Well, maybe not that big of a surprise - she skipped her nap. I still haven't decided if I like that tradeoff. People keep telling me that she'll give up her nap completely soon but I don't see that happening - if nothing else, she'll be expected to "nap" or at least rest at preschool for another two years. If she does stop napping, though, that means that she'll be pretty much almost completely but not quite weaned. And I'm so OK with that. 
• I had a long to-do list for today and did...some of it. One big thing I did was toss out all my expired coupon circulars. I had a lot. A lot lot. Nothing to do with hoarding, I'm just lazy. I'm going to try to do this every three months from now on. I waited quite a bit longer than that between the last cleanout and today and it was not pretty. 
• I also broke my "no international sales" rule for my Etsy store and set up a listing for someone in Australia. This is a test. If it goes smoothly, I may consider doing more international sales. The trickiest part is getting to the post office, which can be a giant pain in the ass. The shipping cost isn't as much as I thought it would be - or at least, that's how it appears on the USPS website - so it's more of the hassle factor. We'll see. This person ordered ten breastfeeding buttons - so basically they played to my softer side. 
• I didn't make it to a blogging meetup on Saturday because I just couldn't figure out the logistics. Instead, there was lots of time at the park - it was in the high 60s and low 70s - and walking around outside. Disappointingly, we ran into a mother who could not understand why I might not like her son climbing a swingset (not a climbing structure) and then dangling right near my child's face. I thought that it was a universal understanding that if one mother is uncomfortable/feels that her child is in danger, particularly if she expresses it in a as-polite-as-possible-while-being-concerned manner, other people back off. Alas, no, apparently sometimes it leads to a lecture instead. 
• I also got to go to an art gallery to see an incredibly provocative installation/show called My Sweet, Sweet at Agnes Scott College. (It closed yesterday - we saw it in the final half hour of it being up.) It felt good to look at art, take in meaning, and even talk to one of the artists himself. Go me, doing a not-mommy thing.
• So now it's almost time for lunch and then preschool pickup. I've got to find my groove for the week. Today it feels very elusive.

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.