A Smaller World

I lost a friend last Friday.  Alison Piepmeier was larger than life, a passionate and eloquent advocate for her daughter, Maybelle, and for equality in all things.  We met online, back when I was still writing, and then in person at my first NDSC convention in Washington DC in 2012.

2012 NDSC Convention

She missed the next few conventions for various reasons but I always assumed we'd meet up again at the next one.  But then her tumor came back.   I had planned to go help out for a weekend but the dates were moved and moved again and then there was no more time.   So in the middle of July, a week before my 5th NDSC convention, I manufactured a trip to Charleston and was able to spend an hour or so with her in the morning.  And then another hour in the afternoon.   She was weak, she occasionally fumbled, trying to find the right words, but was as insightful and vibrant as always.

Charleston, 7/11/16

I, however, couldn't find any words.  No profound, comforting thoughts about her looming death, or leaving her daughter nigh orphaned.  Nothing about what her friendship had meant to me.  I hugged her and told her I loved her and left flowers.  I hope that just showing up counted, a little.  I suspect my visit was more for my benefit that hers.  I worry it was intrusive - two plus precious hours lost to random online friend - but am profoundly grateful her mother let me have that time.

Even more so now that I couldn't attend her memorial on Friday.   At least I got to say goodbye in person.

Alison had this gift of making you feel like the most important person in the room.  She was warm and enthusiastic about everything from a FB snapshot to long rambling post.  You can see in the hundreds of comments and eulogies that she made everyone feel just as special and I know I am but one of hundreds who loved and will mourn her.  I am, by contrast, a tetchy introvert but her loss is that much more profound to my small world.  I hope I can show up for my other people with half as much gusto as she did.

Alison Piepmeier
12/11/72 - 8/12/16

Tiny little bubbles

So I've been thinking about getting back to the roots of this ol' blog and posting a daily picture for the grandparents.
No promises (especially since I had to backdate this one).
I'm also guessing there will be an excessive number of end-of-day PJ shots.
Meh. I'm going to assume you believe they went to school in real clothes.
Outfits aside, damn, they are adorable or what?    
And, yes, they were blowing bubbles inside cause that's the way we roll.  

Advocate Mom

Last year I wrote an Ode to the Convention for our local Ds group so if you're looking for a perky general NDSC Convention overview, go there.  It's all still spot on, except this year I met even more new dearest friends.  People I could spend hours & hours talking to, and who I'd get on a plane to go see tomorrow (and I don't say that lightly - the charm of jet travel is dead).  

 
Not that it was all social.  This was my third year going and I still had to make some hard choices between sessions. Perhaps because I wasn't feeling overwhelmed and frustrated enough with my life, I bypassed talks on inclusive education, technology, and cognition research (all dear to my heart) and went to the legislative action session, put on by Susan Goodman of the NDSC.  Oh, MAN.  That was not the right place to go for peace of mind.  There were no self congratulatory secret club hi-fives.  We are a population besieged and subject to the whims and grammatical errors of baby faced staffers drafting legislation in dark back rooms.  She talked about seclusion restraint, the ABLE Act, and Medicaid.  Issues that can wreck immediate and life altering change on families.  Apparently there's even talk of entwining IDEA with Common Core.  Is this a good idea?  Will it raise standards, ensure accountability?  Or will it erase decades of progress?  I have NO idea.  This is heavy policy wonk territory and so much of it depends on obscure studies and competing "experts."  So much depends on implementation and application by faceless bureaucrats.  It's overwhelming.

She also said something troubling - she said compared to other groups, the Down syndrome community is NOT particularly politically active.  

I was peripherally involved in the online campaign following Ethan Saylor's death and to be blunt, it left a not-so-great taste in my mouth.  The national groups weren't talking, the police were busy "investigating" themselves, and very, very few people gave a fuck.  Politicians, media giants, and celebrities who had children with Down syndrome stayed silent and ignored direct appeals for help.  Outside the Facebook group I was in, the internet let out a lazy *meh*.  Inside the FB group... well that was a PhD thesis on group dynamics begging to be written.  We were some pissed off parents with a righteous cause but there was also sniping, grumbling, and hurt feelings.  There were hundreds of ideas, letter campaigns, competing online petitions, and blogging manifestos - but in the end it all petered out.  20 angry letters go in a [round] file.  I doubt if any official ever got more than 100 letters, much less the 20,000 needed.  There were no marches in the streets.  No one chained themselves to the theater doors.  Turns out Ethan's mom was in favor of the police training many of us had lambasted as whitewash.  The officers who killed him were never charged.  I feel like we failed.

And then there's that pesky job-with-small-children situation.  I do enjoy my social media - I meah, hell,  I "have a blog" for whatever that's worth ($5 payable to google annually, if you're curious) - but I can barely keep up with the online petitions conveniently linked to in my FB feed.  I rarely make it to our local Ds group's fun events, much less to the serious stuff.  The thought of meeting with competing experts and parsing the fine print of my state's Medicaid law is.... just, no.   Susan Goodman suggested I make friends with my representatives' staffers....*snort*.  It takes a year for new co-workers' names to sink in (in fairness, turnover is high) and did I mention my lack of people skills?  I'm not going to do any cause any good if I show up with burnt cookies, stammering about obscure educational codes of which I have little understanding. 

There's also the small fact that I really haven't had to advocate for my daughter, not really. Not yet.  My girl's IEP team is fantastic and they've given, without us even asking, what other parents have to hire attorneys for.  No conflict.  There've been a couple doctors I haven't cared for and we've switched.  No big deal. I've chided people about the use of the R-word.  I hate the cold, hard eyes of the pre-teen girls at the park, but I stare them down and they keep their distance.  There aren't any campaign ribbons for besting 13 year olds.  [Though there really should be - those girls can be mean].  I find the number of competing Ds-interest groups a travesty of wasted resources, so I'm not going to start another, and the Great Letterbox debate bores me to tears. (It's a piece of paper, for God's sake - you think people will forget termination is an option if you don't mention it?  Gah.)  Unlike other, more natural advocates, I have had no searing experience to light a fire in my belly. 

But both my children love to sneak into our bed at night.  And as irritating as those elbows and feet are, I marvel at the fact that their safest, happiest place in the whole wide world is right there between mom and dad.  The level of  responsibility that entails brings me to my knees.  I'd like them to eventually venture forth in the world - not just so I can sleep better - but because it's their right as human beings.  I'd like it to be a reasonably safe & welcoming place.  It might not be, especially for my girl, but their trust requires me to try.  Small steps, people, small steps. 

And so with that it mind:  If you want to earn some good karma, contact your Senator and Representative to ask them to vote for the ABLE act.  This isn't a Down syndrome specific issue - all disabilities are welcome.  There is wealth of information, links, and pre-done templates right here, on the NDSC website, and if you don't know who your Rep is, you can find them here.  Send an email, make a phone call, drop a line on their facebook page.  Do good.  

Smorgasbord on Aging, Stress, and Working.

- Since Easter I've pulled 4 all nighters for the corporate gods and I'm still hyper ventilating in the morning at the sheer volume of shit that needs to get done.

- These days, an "all nighter" means staying up till 2-3am.  I really should have powered through till dawn 'cause I could have used those extra 3-4 hours but…  then I'd have keeled over and not had to worry about anything ever again.  Come to think of it, that sounds rather relaxing.

- I thought I was supposed to need less sleep as I got older?  I call bullshit.

- I miss you guys.  And I know it's the devil, but I miss you guys on FB too.  I'll be back soon.

- I did take a little time off ~ On Friday I took The Girl to Children's for her annual labs.  Fun stuff.  We were about 4 months early because for the first time in her entire life she got a nosebleed.  And then a second.  And then she fell asleep on the stairs. And then her teacher sent home a note about how abnormally tired she was.  I didn't say anything because I knew I was being ridiculous but if there is anything that could break us right now it would be leukemia.  Fiscally, emotionally…  I know people find a way, but bankrupt, unemployed, and heavily medicated to stop the shrieking was not on my bucket list.  (Her labs were fine so I was being silly and also, YAY!  Also?  I wonder how other people live when they don't feel constantly stalked by Death.  I assume they're happier, yes?)).

- The weekend was chock full of parties and playdates and swim lessons.  All great stuff but Matt had to work both days and my daughter spent all of Saturday demonstrating her very best elopement techniques near various busy streets so by Sunday I was looking forward to going back to work.  Hyperventilating over my mammoth corporation's money is exponentially easier than keeping my small child off the neighbor's front bumper.

- I took another half day yesterday to get a mammogram and Girl Check.  I'm sorry, I know you must be jealous of my lollygagging ways, but please note this is not the wrinkle-free, sag-free, mid-30s baseline "practice" mammogram.  Shit's gettin' real, yo.

- Many years ago I wrote this post about meeting my friend RK for the first time.  I opened with a line I was sure, ABSOLUTELY CERTAIN, came from a Mid-East class I took in school.  Except I've been watching old West Wing episodes at night because I don't have the emotional energy to invest in anything new and….  I am full of crap.  It was President Bartlett.  I'm sure Aaron Sorkin and/or my college prof were not the first people to have stumbled into this bit of wisdom but I now have the highly uncomfortable feeling that MY stumbling into said bit of wisdom did not come courtesy of my Stafford loans.  Since pretty much everything I know or believe seems to have originated with the WW series, I'm wondering if I could get my tuition back, please?

- I am the heaviest I've ever been, including those immediate postpartum days, and despite all the love yourself/don't buy into the media hype bullshit I'm full of self-loathing.  I have not suddenly taken to eating pans full of brownies by myself in the closet (though that is enticing), leaving age, stress, and the slow creep of the western civilization to blame.

- Compounding that fun is an epic, albeit self-diagnosed case of plantar fasciitis. Nothing starts my day of better than getting up out of bed and nearly collapsing to the floor.  Nothing helps fight Middle Age Spread than being unable to workout because my feet hurt because they're carrying too many pounds, preventing me from working out to lose said pounds.  Feeling young and vibrant I am not.

- I did sign up for a cheapie Parks & Rec yoga class. Matt might kill me for sneaking off twice a week but it would be soooo much worse if I didn't.  Because while I'm fairly certain this is Yoga Lite and it's not even challenging for a yoga-novice like me, it is amazingly relaxing and I leave feeling much less creaky.  I'm also leaving in that gorgeous late afternoon light amid all the spring bulbs my tax dollars bought, and it's just blissful.

- On my 2nd or 3rd session I'm pretty sure I fell asleep during the ending meditation bit.  I jerked awake and everyone else was already sitting up and the teacher was saying her goodbyes.  I think I should have been embarrassed but… it was weirdly nice.
And on that note I'm off to bed!

And Not To Yield.

...Even when good sense and everything that is good & holy suggests you should…

Everything that is good & holy:

It was a long cold winter here in Flyover Country and my running slowed & shrank to the point where I missed the March and April races I'd planned to run.  But spring has wrought its magical and I've been trying to get off the treadmill and outside occasionally, to breath actual air made with oxygen and pollen instead of mold spores from my basement.

I went on a "long" (relatively speaking, see above) run on Sunday.  It was raining when I first woke up so I hit snooze, but the sun was out by the next buzzer and the possibility that the early rain may have foretold more rain never occurred to me.  You can take a girl out of Cali but apparently can't take the Cali out of me.  The rest of the day was booked so if I didn't go then I wasn't going at all and we have Easter chocolate here that needs to be eaten.  This is the type of Life Balance I strive for.

Many, many years ago I bought Matt a book by a test pilot for the Air Force during WWII.  They traveled the globe looking for the most exciting weather to fly thru - they tried the Andes, the Rockies, and Alaskan glaciers.  They ended up here in the Midwest.

By way of example, it was 70-ish degrees Sunday afternoon.  On Monday it snowed.

Last stand

About a mile into my loop I heard thunder rumbling and saw a wall of black clouds approaching, but figured I had some time.  I wasn't really running that far.

At about mile 2 it started sprinkling.

Right at the half way point, the sky opened up and not only were there buckets of water being shot thru an air cannon at me, the thunder was drowning out my music and the lightening was close enough to have elicited squeals from the kids.  [Who were, lest there be confusion, safe at home].

This was taken later on my way to work.  Pretend it's darker & more ominous.  

I thought about ducking into a store and calling Matt but he would've had to drag the kids out into the storm in their PJs and, frankly, I would have never heard the end of it.  He delights in telling me about every runner who's ever dropped dead of a heart attack and cackles over the potential life insurance pay out (he does this is the nicest way possible though, I assure you).

And I really, really wanted to finish my run.  Having wimped out all winter I needed to earn back my tough girl stripes.  It's just a squall, it'll pass.  But then again, I was a prime target with my cell phone sending out little electronic invitations to the clouds, and wouldn't that just be the most asinine way to die?  "Woman Willfully Ignores Massive Lightening Storm, leaves behind 2 children.  Donations in lieu of flowers can be sent to…"  (Screw that, btw, I want flowers.  LOTS of flowers.)

But then again, I am rather well insured.  Matt could add music & hippo-therapy to The Girl's schedule, buy her All the Pretty Dresses, fund The Boy's college and his robot-lego-geeky-budding chef camps, and the cars really do need to be replaced.  He could even fix the Mariana Trench this beast created in our back yard:

Look at me, sacrificing for my family!  But no one will ever love this pain-in-the-ass dog the way I do.  Nor remember to charge The Girl's iPad every night.  Nor let The Boy run amuck with his various "experiments," destroying the house & kitchen in the process.  

Maybe I should stop & call?  After all, we've already been hit by a tornado.  Twice (sorta).  When pregnant with The Girl I had a negative quad-screen and THREE negative level II ultrasounds, with nary a whisper of an extra anything.  She's also the 10% of the 10% of the 10% that had to have her strabismus re-repaired.  And, of course, there is the freakish bit of bad luck that caused us to lose Brennan.

If anyone is going to be hit by lightening, it'll be me.

But then again…. The odds of all that happening AND getting hit by lightening?  Infinitesimal.  Even if I were hit, Matt would have one hell of a story.  He could sell movie rights!  Retire!  Move back to earthquake country!

Even better - on the off chance I survived a lightening strike, I'd have the most awesome blog post EVER.

That's how much I love you guys - I'm willing to risk six weeks off work streaming Netflix while someone else does the dishes  recuperating in a hospital room just to bring you a good story.

Alas, I was not hit by lightening.  But I did finish my run, got to eat candy, and considered the possibility that the universe may not be out to get me after all, so… win, right?

Query, and Friends over Forty

Would be weird if I actually befriended The Girl’s SpEd teacher?   Like not just “friendly,” but meet for coffee after hours?  She really is awesome and is one of those rare, rare people who seems to like me too, and I think she just accepted my casual invite/bribe to chat about ESY.  At Panera.  On Tuesday.  

It IS, however, entirely possible she just likes free coffee.   

I hit it off with one of The Boy’s teachers a couple years but she got weird when I invited her to a bunco group (Bunco, for the uninitiated, is the mid-west's excuse for a bunch of SAHMs to get together and drink too much.  There is occasionally dice involved.)  In retrospect she had good instincts, since I dropped out shortly thereafter myself.  If you can’t click with anyone over a bottle or two of wine there is no hope.  These are not the people you're looking for. 

I'm sure I was mostly to blame since I'm never at my most adorable when confronting large and less than warm groups of people I don't know, so no fault of theirs for not finding me fabulous, but it just wasn't happening.  Even with the wine.  Did I mention the wine?  It didn't help.  

Ever since I’ve had it in my head that the social mingling of parents & school staff is frowned upon.  It probably is.  The potential conflicts could be legion.  Especially if you spend a little time with them and then decide you don't care for them that much after all?  Have you ever hit it off with a mom and tried to  expand into a couples' dinner and then you find out the couple bicker all night and/or over-share their bedroom fetishes?  

Yikes. 

But still.  Making friends as a grown up is hard, especially for the socially awkward an introvert.  I have been blessed by several very dear friends and made more than I could've hoped for through this space.  (Most of whom I'm excited to see this summer at the NDSC conference!  Whoot!)

But as loved as I feel in general I don't think I can say I'm not hiring - any good company will snatch up quality people, independent of staffing levels, right?  

So.  

I guess I'm getting coffee on Tuesday!?

(yikes!)

Drivel

Yesterday morning I wondered if I could write a little bit, every day.

BWAHAHA.  Then I fell out of my chair with the sheer ridiculousness of that idea. 

I remembered my mom emailed me a random funny blog post, many, many years ago, with the suggestion I start my own blog.  "Oh, no," I said with my usual unerring prescience, "You need to be a little unbalanced to write a blog. Those people take entirely inconsequential passing moments and turn them into A Thing and who has time for that?"

BWAHAHA.  

Please forgive me, I knew not of what I spoke - apparently I AM a little unbalanced and can spin three paragraphs out about absolutely nothing.  Or, as one kind reader recently pointed out, three paragraphs of "drivel and whining."  

Not to say any of y'all are unbalanced.  My favorite fellow bloggers actually seem extraordinarily competent & level headed, even in the face of some epic level bullshit.  I, however, can't write about work for fear of getting fired and my extra curricular activities are curtailed by budget & the time restrictions of said job... So I end up with whining drivel.  I was going for "struggling for work/life balance" but alas. Apparently. 

The only time I was (intentionally) dickish online was when someone waxed on about the "right way" to blog and criticized various others' headers, fonts, & post lengths.  Apparently I'm a latent libertarian as this random inconsequential post filled me with rage. How DARE someone presume there is a "right way"?  The Internet is home to everything from cat videos to impassioned essays for justice - but nooo, let's start culling the poor assholes who don't recognize the incontrovertible superiority of Times New Roman over Arial. And don't even get me started about comic sans. 

Or -and here's a novel idea- the High Inquisitors of Social Media could simply move on and read something else.  Or saaayyy... do the dishes.  

I very nearly just took this blog private but that is really, really annoying what with all the passwords & secrecy & stuff so I will formally state, for the record, that if you don't like the drivel found here there are some really awesome cat videos over on YouTube.  Also?  Go screw yourself.  

I Run 4

Speaking of communities and running (ugh, that's not even funny yet), a few months ago I signed up with I Run 4.  The idea is simple - runners will run for and connect with those who can't, mostly via photos and FB posts.  It started with one guy and an offhand comment and now has almost 9000 members.

And, I thought, a great potential for cheesy inspiration porn.

But I have a vast sucking need for motivation.  Matt is more likely to offer me ice cream and a warm blanket than hand me my shoes and such is the magnitude of my sloth-dom, I've been known to actually do laundry while procrastinating.

(though that doesn't necessary mean that I will)

I like the idea that I run.  I'm proud of my race bibs and calf muscles (if you squint you can't see the pasty whiteness or spider veins).  I love the post run high and sometimes, if I'm very lucky, I feel stronger than all my problems during, but putting on my shoes and taking that first long stride is a Big Deal, every time.  So I sign up for races.  

I am a huge sucker for these silly motivational memes.

And I signed up to run for someone else.
Because you know what I really need is more responsibility.

But I also thought it might be a nice thing to do for someone, since we have no money to donate or time to volunteer.  And, squabbles and random snarkiness (auto correct changed that to snakiness.  That too) aside, the Down syndrome and blogging communities provide terrific support & resources.  My daughter's genetic quirk comes with monthly playgroups, of all things, and all the people I've stalked met in the larger special needs community have come thru this space.  What do you do if you don't write and are dealing with something rare, something that doesn't have three or four competing national organizations?

Not to suggest there aren't other fabulous community supports in this age of the internet, but we are on a well trodden path.

I had steeled myself for a barrage of special angel comments but I've seen very little smarminess.  It's light, fun, & supportive - almost like a daily play group - but one that operates in THIS world, the one with hospital stays, surgeries, and occasional gut wrenching loss.  There is a religious base (which I'm happy to ignore) and there can be some awkward, non people first terms but I'd never thought much about the language of disability either, 6 years ago.  I think there's a tendency to bristle and get cranky when we wander out into the world and find the gen pop isn't quite as involved/understanding/PC as we want them to be, but that knowledge doesn't spring organically from nothingness.  Connections and familiarity are the fastest, surest way to that understanding we crave.  People without a single tie to the disability/special needs community are signing up to run for strangers, getting to know them & their families. Running is hard and nothing kills the smell of pity faster than a blister, yet it keeps growing. Y'all know I don't do rainbows & unicorns but that does warm my frozen, cynical heart a bit.    

Weirdly, and last paragraph notwithstanding, I haven't signed up The Girl up to be matched. Partly because I run for her too, but mostly because I think she can run for herself.  Just like Jimmy Jenson.  Now if there was a group for the non-verbal…

I was matched with an adorable little boy who probably isn't old enough to appreciate my sporadic 5 milers (or my fastest ever half marathon last month - whoot!), but he likes pictures of my girl and I'm one more person in the world who cares for him.  We could all use one more person, couldn't we?

I also doubt he appreciated all my artsy outdoor shots, before it got cold and rainy and I retreated to my treadmill.  Before I found out Murphy shouldn't be running (I wonder if anyone would want to run for my dog?).  But forcing myself to look for photo opportunities during my runs, to be present, was a beautiful gift.

Thank you, Robert - IRUN4U!

Now I just need my knees to hold out.

(photo quality is a different issue)

Well! Hello there!

At the end of May, the powers that be let go of one of my co-workers, sending a crap ton of work in my direction and forcing me into a literal month or two of Sundays.  And the occasional Saturday.  Then, just as I was starting to see daylight again, they let go of someone else.
$%^&*($%!!!

I'm now either the next target or completely indispensable (yay???).  I nixed the weekends on this second go around and have even been leaving at 4 every day now that school started back up, but I am wiped out.  Done-burnt-crispy-drained-exhausted.  I love my job but by the time I get home, parent the children and shuffle them off to bed, I can barely wrangle the remote, much less a complete sentence here.

I have, admittedly, been watching unseemly amounts of TV.  Meh.  Passive, mind numbing, checking out (I'm mostly bitter because of the last Dexter episode & because I finally watched Million Dollar Baby.  Both left me grumpy).  It's better than becoming a raging alcoholic though, right?

All this naturally led to the mommy guilt.  In the middle of a FB discussion about after school activities, I chimed in with this little ray of sunshine:  "I'm back on 5 days/week and am home by 5 but I'm done, they're done, and we just don't... It's a great night if I make them turn off the TV and sit with them when they eat. It seems like such a bleak, subsistence only existence. No dance, no music lessons, no swim team.... 

How much fun are we?  Thankfully, the little Dear Abby voice in my head told me to shut up and fix the damn problem.  We haven't signed up for after school Spanish and basket weaving yet, but I've made a super human effort this last month to get out and DO things - Science Center!  Library!  Nature walks!  Greek parties!  So I do have blog fodder but, perversely, all the fun allowed even less time to sit down and write.  Why is finding balance so hard?  It seems to be a universal problem.

[The embeddy thing doesn't seem to be working in Feedly - here's a link to this very issue, explained in jelly beans]

This blog title was originally just a place filler but it stuck - life is not a trial run.  I just wish I could shake the feeling that I need more practice time.  Hrmmph.  

An Ode to the Convention

[I wrote this for our local Down syndrome group's blog here; just re-posting for my own records. 
Carry on... :) ]

My daughter was diagnosed with Down syndrome in utero, right after they found a massive hole in her heart.  I spent the last few months of my pregnancy reading everything I could find but I was never much one for groups so I stayed quiet on the message boards, never left any comments on the blogs I stumbled across, and was still blissfully Facebook free.  I was also distracted by the fact that several months hence someone was going to slice my child’s chest open – “community” isn’t on the radar when you’re busy studying survival statistics.

I was also a little alarmed by the vast spectrum of people out there – angry, religious, atheist, grieving, perky, happy, sad, you name it.  It was overwhelming and I doubted whether a little chromosome was reason enough to wade into that mess.  It took years before I started blogging myself and then another couple before I finally conceded to the lovely monstrosity that is Facebook.  Along the way I did latch on to a few like-minded moms but I didn’t attend the NDSC convention, the mother of all groups, until last year.  And I – an admitted introvert – was sold.  Hard.  And now I want to sell you:

First, there is a ton of information.  They do an awesome job of offering something for every age range and interest – from babies, to school, to independent living.  There are talks about finances, science and research, computer apps, and pretty much anything else you’d fancy.  Even if you can’t go every year, you should go just once to listen to Dr. Skotko talk about siblings and Libby Kumin on speech.  This isn’t information you can pick up in an internet article or a textbook, this is why and how, at its best.

This year, for example, after a surprising decision to send my girl to kindergarten early, I attended a talk on inclusion by Patti McVay and it was revelatory.  I understood it to be the preferred practice, understood the theory of peer modeling, and have cheered and consoled friends as they wrangled with their schools, but it wasn’t a reality for us yet and I remained a bit fuzzy on the logistics.  I worried about bullies and my girl ending up in the corner, ignored.  But I left that workshop weeping, full of hope, and I am NOT a crier.  This alone was worth the trip.

Second, it’s euphoric.  Just imagine a weekend surrounded by people who get it.  Who won’t accidently let slip the “R” word, who intuitively understand that kids come in all packages, and who only express pity when you tell them about that crazy shuttle ride, not when chatting about your child’s latest ups and, um, downs.  Plus, you can meet your computer friends in real life, turn them real friends, and it becomes much less weird to explain your social circle to the in laws.  And did I mention I’m not a people person?  If you normally like people, it might be even better.

Third, it’s a great opportunity for the kids.  We actually left mine with the grandparents this year because the kids’ camps fill up faster than I can plan, but ignore the hypocrisy.  Yes, inclusion is awesome – the other 362 days of the year. My daughter will learn to live in, navigate, and find happiness in this world just like her typical brother.  But I’m not naive enough to think it will always be easy for her.  I want to offer my daughter a fun weekend where she can relax and compare notes with her peers, complain about her over-protective parents, and cut loose on the dance floor, free of high school prom politics.  (Did I mention there was dancing?  There’s dancing!)  There’s an entirely separate track for self advocates over 15 – a space just for my girl and her friends.

There’s also a sibling track for 6^th graders and up.  As great as my two kids are together now, and as open as we try to be about it, I’m also not so naïve as to think my son might not want to touch base with other kids who have to sit in SLP waiting rooms.  He might even want to let off a little steam about his goofy parents or atypical sister, without it turning into A Thing.

Even if classes make you yawn and your kids never complain, last year I was waiting in the lobby for my husband when I saw a teenage boy do what teenage boys do the world over – he walked past a girl dressed to the nines for the dance, did an abrupt about face, walked up and introduced himself.  My husband arrived and we left to the sound of the girl giggling.  Both had Down syndrome.  My heart melted.

I know it can be expensive.  My husband works for an airline, we fly for free, and it’s still expensive.  But after the first year I swore I’d go even if meant three days of top ramen and park benches (happily for my back, we were able to avoid that this year).  And lucky for YOU, next year’s conference is in Indianapolis, a mere 4 hour drive from St. Louis.  If the budget looks daunting, don’t despair:

1. Skip the meal plan.  We’ve never done it.  Most hotels have mini-fridges now.  Swing by a grocery store and pick up a couple staples before you check in – yogurt, cereal, PB&J, top ramen, whatever floats your boat.
2. Skip the big award dinner.  We had a pizza party in our room that night instead.  Just as awesome, no crowds, no rubbery convention chicken.  The dance after is always free and there’s no dress code.  You see everything from shorts to prom dresses.
3. You don’t HAVE to stay in the designated hotel.  If you can find a cheaper hotel nearby, book it.  Someone else will invite you to their room for pizza and nobody will notice or care where you slept.
4. If you’re still skeptical, come the first year kidless, even spouseless, to check it out before you multiply your costs by a few mouths.  You’ll get the presenter’s power points as part of your fee and can report back.  Some of the presentations are even available by video later.
5. Split a room – there are always others traveling solo.  FB is great for cost sharing hotels, cabs, etc.

Community, information, and dancing – what’s not to love?  It’s a short drive next year, and who knows?  If you come, I may even invite you over for pizza.

In 'n Out

I spent the last week in Los Angeles with Gigi - she slept a lot and didn't have much to say so I was able to catch up on Facebook and my reader.   I did read everything you wrote but started the week with over 1000 posts so my usual charming, pithy comments (ha!) have been withheld in the interest of time management.  I hope y'all forgive me.

The last six weeks of work, since losing a co-worker, and this week, sitting next to my grandmother who would very much like to die, have been draining.  There were the usual stand by travel shenanigans so Matt ended up staying home with the kids.  It should have been a relaxing week - no minions to tend to & no corporate gods to worship.  I ran everyday and watched movies with her, as well as reading, but as the work stress slide away, I fretted over bedsores and those awful words, "quality of life", instead.  She didn't want to get in her wheelchair and go outside.  She didn't care what we watched on TV.  She didn't care what was for dinner.  She cared very much that the kids weren't coming but that was the one thing I couldn't give her.

As nice as it would have been nice to close out this week with some deep, insightful thoughts on disability and the meaning of life, I actually just feel tired and sad.  I bought some lamb chops for our last dinner together and couldn't find the tiny cast iron broiler she'd use when she cooked for just the two of us - I nearly started crying.  Then I had to cut the lamb off the bone and into tiny pieces for her.  I made potatoes instead of couscous, which is what she would have served, because the potatoes were easier for her to eat.  And when her aide had said earlier she didn't care for lamb and would pull something from the freezer I was relieved because that was our meal, and our tiny broiler wouldn't have been big enough for lamb chops for three.

Which was not a very nice thought, considering this is the lady taking care of my grandmother.

The broiler, found.

I also found myself thoroughly impatient with the online debate over inspiration porn & ableism, with parents grieving their reasonably healthy, living children &, perversely, those criticizing the parents for adding to the "grief narrative".  I'd like someone to come explain to my grandmother how the utensils she can now barely hold are ableist and figure out some other way for her to eat.  Assuming she can hear you.  Because the pillow keeps knocking her hearing aids out.  Damn ALL the words.

I have been a colossal grump.

I was even a total dick to one guy on FB over what, in retrospect, was a fairly innocuous bit about "better blogging".  I'm still cringing about that - the person I am in my head would have shrugged and moved on.  Maybe it's a good thing I haven't been commenting?  (for everyone else, that is)  Hopefully the universe will forgive me that one.

I usually DO enjoy the conversations.  Language matters.  It shapes our perceptions, chips away at the pity, and kills the "special angel" comments.  Advocacy, writ large over the decades, lead to our recent, delightfully awesome IEP meeting.  But the lady taking care of my grandmother, who once worked with disabled kids (*cough*  "kids with disabilities"), and who used about 10 different cringe-worthy non-people-first terms in one twenty minute conversation, made my grandmother enchiladas and told me about a time she called her friend, the council women, because her "little Downs girl" belonged in the regular class and she was going to take on the entire Los Angeles school district to make sure it happened.  Sometimes language is just a jumble of verbs and adjectives.

Sometimes we I need to be free to tell my story, to grieve Gigi's lost independence without regard for a  "disability narrative", or fret over my child's missing voice without being an "ableist".  Without worrying about how to get 18,000 page views or wondering if my header picture is attractive enough.   This was never really that kind of blog, anyway - obviously, given my 3 readers.  Matt and I are going to the NDSC conference next weekend.  Maybe I'll get a little artsy advocacy inspiration going and get back in the game.  

The quality only matters if you like cheeseburgers.

There will be ponies at 9.

Last year The Boy's 7th birthday party was cancelled because he came down with a pestilence of some kind.  Which was unfortunate because Aunt Mary was in town and had helped me make several gallons of sangria for the party - which we tragically were then forced to drink ourselves.  It was moved to the following week, conveniently when my mom was in town, but the sangria was gone by then and I have a very, very strict 2 sangria gallon/month maximum.

Different sangria party.  Different month. Still awesome.

Two-ish years ago my husband was at the St. Louis airport when it was hit by a tornado.  Which I can still only marvel at.

This year, in one of those great confluences of freak luck and damn statistics, my son's birthday party was disrupted, again,

by a tornado, again,
that hit the St. Louis airport, again,
while Matt was... ok, he wasn't there again,
but he was about to be, to pick up a friend, until he took a look at the radar and hunkered with us in the basement for a while.  He left later but ended up getting stuck on a bridge for 4 hours because the tornado damage, turns out, had shut down the freeway.  He doesn't like bridges and called me every 15 minutes to inform me the bridge hadn't collapsed yet.  That was fun.

The Boy has an almost-summer birthday and cheap, lazy parents so we have so far managed to avoid the Friend Party.  I've thrown his class a holiday cookie party the last few years, and there are always a bunch of cousins at the family party so I've managed to not feel too guilty, but he finally asked and he's almost too old for the traditional 2-hour pizza-cake-shoo schtick, so we broke down this year.  He had almost carte blanche and, delirious with the freedom of it all, took almost a month to settle on a couple of besties and Dave & Buster's.  Which, if you've been spared that particular joy, is a bigger, less grimy, mouse-free version of Chuck E. Cheese - though they have a liquor license, so it's almost awesome (Flashing strobe lights and beer!  What could go wrong?).  This was to be a Very Big Deal, as only something built up in an almost-8 year old's head for almost 2 months can be. 

(The family party was also a Very Big Deal, because of mommy's awesome, newly found crafting skills, but more on that later).

The tornado was last Friday night and the party was the following day - it took a while Saturday morning to confirm the place was indeed shut down and then we had to deal with a Very Sad Boy.  This was one of those delicate parenting moments - people's homes were pulverized while my baby was Very Sad over what amounted to a schedule change - but kids can't learn empathy for others without owning their own feelings so there were lots of hugs & cuddles.  In retrospect we probably should have done something more civic minded and Life Lesson-ish, like bring coffee & donuts to the emergency workers, but we would have just been in the way and, well, I didn't want to get stuck on a bridge for four hours either.  Maybe we should have brought donuts to our local FD?  Darn it!  Hindsight!

We ended up going out to lunch with some friends, hit the park, and had a couple of those handy cousins come over later so he survived... and the party was rescheduled.  But when he turns 9?  The universe better show up with ponies and unicorns and fireworks.  And mommy may show up with some donuts for the FD too.
   

No, he's not about to jump.

I still want to start watermarking before I put up better pix...

Ha! Right, I'll get on that any day now.

The Daily Grind

...continues.  I was thisclose to being caught up when my co-worker quit this week. *sigh*  
Work-life balance is a myth. 

However, for pure entertainment purposes, I have four post-ettes ripped almost right from the headlines ...of that month old paper you haven't recycled yet.  I tell ya, it's almost just like CNN over here. 

Angelina Jolie gets a double mastectomy
This sparked quite a bit of conversation online but, although we have lots of other issues, breast cancer hasn't made an appearance in my near family.  Of course Gigi only had boys and my mom is an only child so my statistical group might be a little skewed, but let's not quibble.  So about a month ago I went to see my ob-gyn because the girls were sore, aching all the way down to the muscle and getting worse.  He said...      (*dramatic pause*)

I SHOULD DRINK LESS COFFEE.

(*sob*)
I'm not trying to make light of this and I know I should be grateful it's not anything real, but please, please, please don't take away my coffee.  Please?

Parents sue over their son's photo
I've thought off & on about the risks of putting my girl's picture out into the world but this space is tiny enough to avoid the creeps' radars and haven't done anything about it.  But I don't let the schools use or publish either kids' photo.  Because I am a hypocrite.  Of which I was again reminded when The Girl's daycare primary called a couple weeks ago to ask if I wanted her included in the end of year video.  I said no but thanked them for asking - I'm sure they were just as worried I'd flip out over the exclusion as the potential liability for breaching the 'no photo' form.  It's got to be tough for them to navigate a bunch of ferociously overly-sensitive parents.  Meanwhile I'm on a self imposed photo blog ban till I get this watermarking thing figured out.  Time to follow my own obscure, conflicting, Kafka-like rules. 

This post by a huge NDSS fundraiser, telling them off.
Unlike the NDSS, our local group’s new president has taken the ‘advocacy’ in their mission statement to heart and has been emailing updates on the Robert Ethan Saylor case, calls to contact state congressmen to preserve early intervention funding, and federal Reps on the seclusion/restraint bill.  Weirdly I can push, bully, and charm people on the phone all day at work without qualm, but I hate-hate-hate talking to anyone at home.  Cable people and babysitters are solely Matt’s responsibility.  But goaded into action by my local group, I summoned up all my emotional reserves and made whopping 1 minute phone calls to each of my Reps’ snarky staffers.  And then I signed up for this year’s Step Up walk [ours is a “Step Up,” not a Buddy Walk, so they don’t have to kick back any of their money to the NDSS] because I can’t complain about the national groups' colossal failures without supporting my group when it’s doing it right.  I’m not that much of a hypocrite.

Although I gave my friends and family exactly two weeks notice and of course everyone is booked. *sigh*  Baby steps, people, baby steps.

Manhattan women buy disability guides
I know you all heard about this, but it reminded me I never wrote about our last trip to Disney in January.  Sadly it will likely be literally the LAST trip, because just after we came home Disney abruptly killed our travel industry discount, both cars now need timing belts (and happy car fairy dust), and we (surprise!) didn't withhold nearly enough money last year for the IRS.  Boo.

Oh, wait...  So if we stand in line with the nice lady from New York and her family she'd pay for our trip?  We wouldn't have to talk to her, or anything, would we?  Hmmm.  

I'm joking!  (kind of.  maybe.  depends on the offer - what's our souvenir allowance?)

We were there to run Disney's half marathon but I brilliantly took the kids to the park the day before in awful, terrible, no good, very bad shoes.  My feet hurt by the end of the day and they hurt worse the next morning, right before I was supposed to run 13 miles on them.  I was lucky though, because I ran the whole way with this nice lady here and it was the first time I've been able to talk and run at the same time.  It was a personal worst, as far as time goes, and I whimpered for days after like I was walking on broken glass, but I didn't think you could have that much fun running.  It was awesome. 

(ms. see-tee-via!)

There were fireworks!  

Every race needs fireworks.

At one point in the park I was holding The Girl while Matt and The Boy were off procuring provisions.  A guy approached us, said my girl was gorgeous (of course!), and to dispel the potential creepiness, he waved over at his family, including an older boy with Ds, they waved back, and we all chuckled a bit.  Then he palmed his special needs pass like it was hot watch and asked if I knew what it was.  Then I really laughed and showed him ours.  Who knew?  There really IS a secret club card.  

I truly hope that the socialite doesn't screw it up for everyone else.  The first time we went I felt a little guilty because The Girl wasn't any more of a pill than any other 3 year old, but there's no way my almost-5 year old tornado could stand in line for an hour or two.  Not a chance.  Even the couple times the special needs line was long and we had to wait were not great - she's too big to hold for long, yelled to get out of her stroller, and kept trying to bolt thru the crowds.  I suppose this would be more persuasive for Disney if I didn't preempt my story by saying we were too poor to visit but we'll get back - one way or another!