Showing posts with label 2011. Show all posts
Showing posts with label 2011. Show all posts

Sunday, January 1, 2012

Goodbye, Hello

Wiped out.  A year, gone.
Here's to fresh starts, clean slates, naps,
and black patent shoes.


 She and her brother both sleep exactly like their daddy - one arm up.  Perhaps 2012 will bring a napping montage. 

Thursday, January 13, 2011

Something along the lines of....

Yesterday I had a conversation with one of my vendors, an investigator, someone I've known, albeit only slightly, for 10 years now.  He does a great job, though I don't need to use him that often.  His wife died last year (?) and I sent him a condolence note.  He wrote a thank you note in response - i.e. nice guy.  I'd asked him to door knock someone for me - he called after talking to this lady and provided all the pertinent information but mentioned that he didn't take a formal statement because the witness was busy with her new baby.  Who had Down Syndrome.  And it was pretty sad. 

It was one of those moments - fish or cut bait?  step up or back down?  After we were done talking about my case I said something probably complete incoherent but along the lines of "Hey, there's something else..." Long, pregnant, very awkward pause... He finally said (something along the lines of) "It's me.  What?" 

"I only say this because we have exchanged condolence cards but my daughter and that baby have something in common..." [THAT was clear as mud.  Silence.  Trying again.]  And this time in a clear voice, I said, "My daughter has Down Syndrome too.  We are not sorry.  Saying it's sad tends to rile the parents up".  [Nice use of the 3rd person there]. 

He was very apologetic.  I told him about ten times not to be, it was just a phrasing thing, & I still think he's a great guy.  He said that someone he's close to has a kid with DS too [Some of my best friends are!].  He said something about they're such sweet kids, blah, blah.  Pretty much everything he shouldn't have said.  But this is about the sweetest most innocuous person you could ever meet.  I wasn't offended, didn't want to make him feel bad (jeez, his wife just died), just wanted to set the record straight:  THIS IS NOT A TRAGEDY. 

This is also my first reasonably successful stab at advocacy.

~~~~~~~~~~~~~~~~~~

The first non-successful attempt:   my leaves-me-entirely-alone-thus-is-fabulous boss called meeting for the annual HR "We don't discriminate"pep talk.  I'd been working for him for about 6-9 months, I think?  His job is to read the manifesto and have everyone sign the acknowledgement forms.  Dry, time-suck of a meeting.  So he tried to lighten things up.  "We don't discriminate against [insert various minorities]...except for stupid people."  It wasn't a one time badda-bing, it was the running punch line for a hour.  "We will always be polite and professional to everyone...except for stupid people."  And lest he forget, I was sitting RIGHT NEXT TO HIM, my foot shaking faster and faster, my doodling ever more focused.   When the meeting was over, I walked back to my desk, waited maybe 13 seconds, said something along the lines of F*** It, marched back into his office, shut the door without asking and, literally pacing back and forth in his tiny, tiny office, said that if one more person said retard or made a joke about drooling people I was going [I trailed off here.  I had no plan.  Not exactly a cinematic speech].  But then I said "You've been over to my desk.  You've seen the pictures of my kids.  YOU are not stupid.  Not everyone's kid is going to college". 

He was sitting in his chair, said I'm sorry, said nothing else, and I flounced out.  He never came back 'round to see if I was Ok with our little chat.  This past year he had the HR pep talk on a day I was off.  I presume that was not accidental.  He's occasionally friendly and, as I mentioned, leaves me alone so we're OK.  Mixed reviews on the advocacy.  Yes, I said something.  No, it was not entirely coherent.  No, it was not done in flagrante but I'll give myself a pass on that one since it's probably not a good career move to tell the boss off in front of his other employees. The first time at least.   

~~~~~~~~~~~~~~~~~~

There've been 2 other times people used the "R" word and I said (something along the lines of) "Please don't use that word."  Or, "You're not really going to use that word with me?"  Non-memorable events. 

I did not say something to the guy on the other side of my cubicle one day when he was joking with someone about a bunch of drooling people getting off a bus.  I didn't catch the whole conversation.  I hate myself a little for that. 

~~~~~~~~~~~~~~~~~~
And this has been said before, better, elsewhere, but the point is I see no reason why my little girl's mommy has to listen to the same crap that's she's going to have hurled at her on the playground for the next 10+ years, at the office.  From her allegedly adult, professional co-workers.  Who, let's face it, are not curing cancer.  I just need to work on my lines a little more....

Wednesday, January 12, 2011

Special Dayz

It was a special  morning!  I wasn't sure what to expect, since neither of his parents are known for their social skills, but he did great.  He needed a little prompting to actually talk, since he was busy sitting up there with a big ol' grin on his face but it was great.  In my mom of the year moment, he was showing off his matchbox car collection and told the teacher he wanted to count all the cars.  My first reaction was No, Not necessary but before I could embarrass myself the teacher enthusiastically agreed.  Oh Right!  School.  Counting to be encouraged.  (The tally?  56)

Tuesday, January 11, 2011

Baseball Tramp

So I mentioned a bit ago I don't read many blogs about kids with DS.  A few, but not many.  I was also Miss Smarty Pants, rambling on about how much I looovvvee to reeeaddd.  So I thought I'd wade into deeper water, so to speak, and make an effort to read more.... from families we might have something in common with.  [I hesitated over how to phrase that.  Probably because I don't know what I'm looking for.  I even tried for an 'on the same cruise' vs 'in the same boat' joke - It was just embarrassing]

Holy McJeepers.  THERE ARE HUNDREDS.  One person literally has over a 120 blogs on her roll-er thingy.  Not only am I not even in the minor leagues, I'm not even playing baseball.  How to choose?  My current "plan" is to randomly click through, confirm people are at least still online, and then add to my favorites bar.  I'm still not tech-savvy enough to have set up a reader, so I usually just click down the list in the morning.  I figure if over the series of x-mornings I get hooked then I'll eventually go back and read the archives.  If I wanted to carry the dating metaphor over, I'm now the town tramp.

But it's also settling in that I'm really not much of a special snowflake.  All the stuff I ponder and fret about, has been pondered and fretted about already.  At length.  And oftentimes with better quality photos.  That's true of any parent or mommy blog I suppose, which leads into the whole "we're a community" discussion, especially with DS, but I was raised to avoid the group-think.  I set this up so our Gigi could get more her photos more frequently, and the emotional vomit writing was practically an accident.  Though I have to say it has been ....cathartic.  I presume that's why a lot of other people do it too.  A quiet place to make sense of the crap floating around in your head and at least corral it into a structured format (or not, in my case).  So I'll keep chugging along.  It being public I still have mixed feelings about and find bizarre, but I'll also admit I'm vain enough to be flattered that anyone other than my mom wants to read it.  I don't think anyone in my family is ready for the Birth Story, though, which otherwise appears to be de rigueur.  I also don't think my kids' names are probably much of a secret, for anyone who's glanced at more than two photos, or - hey genius - the undoctored Christmas card, but until we acquire more urchins, 'boy' and 'girl' are clear enough.  It'd be nice not to have to type out "my husband" all the time, or the e'er cutesy "hubby".  The DH of the message boards (darling hubby) makes me itchy.  So as of tonight, I have permission... Matt, meet the world.  
March 2009


Also, keeping true to the original intent - The Boy, getting his hair cut tonight with Classy Bear.

Monday, January 10, 2011

Classy Bear

As part of his Special Week at school, the boy gets to bring home a bear, cart it around, take pictures of it in incriminating positions doing interesting things, and then report back to the class in a special album.  He's very excited about it.  The Book of the Bear's Year is very, very CUTE.  Crafty, even.  Bear's previous photos are cut with special crafty-scissors and festooned with ribbons 'n stuff.  This is one of those times I'm very glad we didn't go first - so I can blatantly cop the other mommies' ideas.  This is the downside to being a city girl in SAHM country. 
(for Gigi:  SAHM = Stay at home mom]

The boy and the class bear:

He also drew a picture of his family.  Not his best drawing as his interest was flagging (he really does know how to write his own name).  But he commented that his daddy's eyes "looked Chinese".  I'd just read this post - which caused me to ponder the downside of my kids living in the Whitest Town Ever (in addition to being out crafty-fied by the SAHMs) - so I asked him what he meant, if there were any Asian kids in his class, etc.  No real answers and he hadn't said it in any particular way, just sounded like he was making an observation, so I let it go.  We're obviously going to need to address differences so am operating under with the "everyone is different - brown eyes/blue eyes, brown skin/white skin" theory.  I also thought this was a great summary over here, about how we shouldn't squelch the questions.

Which makes perfect sense, BUT at what point do we teach our curious, outspoken, unfiltered kids that it's not always nice to comment on someone's appearance?  Last summer we passed a (white) kid in full punk regalia sulking outside the park.  "Mom, that guy looks scary".  Said clearly loud enough to be heard.  The kid deserved it - we're on the outer fringes of suburbia, almost literally in the corn fields. Not exactly Punk Central, so you're going to stick out a little,  especially at a kids' park.  Also, when we had his eyes checked he said to our very hale & hearty eye doc "Wow. You're BIG".  I died a little inside on that one.  I suppose this the "art, not science" part of parenting.

But his sister's eyes - They look just like his.  His dad's eyes look Asian, his sister's...don't.  [My eyes just look craa-zeeey].  Not sure what do with that.  Sad, because the reality is reversed.  But also a little happy that he doesn't see it.  He knows the parade of people coming through are to "help her learn things" and I have said in passing that she'll learn things in her own time, when she's ready, when he asks when/what she can/can't do something.  But he has no baseline of expectation.  She started as a baby doing nothing & now she's doing more stuff.  Which is the way it should be. 

I will get some of the sibling books out there for him though.

Sunday, January 9, 2011

It's not all grim darkness around here

...sometimes it's annoyingly cheerful boasting. 

SuperMom returns!  In no particular order I worked this morning, helped the kid with a coat of paint for his 'boat' (the ginormous TV box), had a rousing game of balloon batting, & hosed off the urchins.  Spent time with the husband.  One canine (of three, but let's not get all analytical here) is also clean and even the foul Den of Dog (aka the laundry room, where the two smaller mutts sleep) was scrubbed down.  There would be phone calls to state agencies made if I confessed how long it'd been since that had been done.  Laundry's done, bottom floor's clean, and the boy wrote FIVE thank you notes.  While bribed and/or under duress, but written.  I am the epitome of virtue and efficiency.  Am also in a much better mood.  Thanks for asking. 

I even pulled out the crock pot and read the directions.  Shocking!  I'm not sure why every recipe involves two cups of gravy but I'm sure there are other options.  I think I'm going to start using this on days both grown ups are working, so the kids don't end up eating only cereal and toast (two different kinds of grains is a balanced diet, right?).  I have some significant concerns about leaving the mutts alone with stewing chicken though.  These are the same dogs that ate flour and sugar.  Straight.  The day after that the big one pulled fruit off the counter - not by accident either.  He ate pears.  Plural.  My mom said her dog likes apples, & I get that they're omnivores, but mine appear to have a sweet tooth.  Tonight, my matronly puppy got into a bag of marshmallows.  And a bag of lentils (?!), to balance things out.  They eat twice a day, they get plenty of treats (everytime my girl eats - she thinks it's funny to feed them), and they have brand new rawhide bones from Santa.  They aren't exactly being forced to forage.  But if I had the choice between marshmallows and dried cow hide, I suppose I'd pick the former too.  

The Evidence & the Suspect  - doesn't she look stealthy?

But this is what I'm the most-est proud of.  While puttering around upstairs yesterday, my girl climbed in our reading chair all by herself and started going thru her books.
 


Daddy kissing her goodbye & the sign for Daddy.
She still won't sign Mom.  She used to - I'm starting to fret. 
I'm sure she's just being a stinker.  The laughing whilst refusing is probably a clue.

 Sign for book.

A REPEAT PERFORMANCE! 
Index finger AND cow recognition!

Also, babes in a basket.

Saturday, January 8, 2011

Of Cars and Cadillacs.

I have a gazillion fabulous work stories.  None of which I can share.  [TEASE!].  Hippa laws, remaining happily employed, the fear of getting dooced, the fear of being found by the plaintiff bar, etc.   BUT.... 

I will now relay a story that is purely hypothetical.  A fictionalized account used solely for the purposes of reaching the punchline below:

Today I reviewed the claim of a 20-something person with SEVERE disabilities.  A 1-3 word vocabulary, depending on the report.  Unable to independently dress, eat, bath, etc.  Litany of various diagnosis and issues and behaviors.  

For all you saps out there, she was not injured.  Their very own doctor said so.  So settle down.  Nonetheless, not exactly a case you'd want to a jury to get ahold of, no?   Given my extensive expertise (*cough*) in the special needs world, I told plaintiff counsel (from day one! and in every phone call!) that they'll need a special needs trust and conservatorship before I can settle.  Did they do this?  NO.  Has hypothetical plaintiff counsel been previously & recently suspended by the state bar for being an incompetent ninny?  YES.  Are we close to statute?  VERY.

...There are other things but I wrote them out and deleted.  Couldn't imagine the mom reading it.
Or, I guess, my boss. 

No one ever likes to talk about death or money.  But SO IMPORTANT.  Employer provided life insurance, alone, if provided directly to a SN kid, would blow the asset test for SSI.  I did learn today the car is exempt - Assuming mine were running.  Which it never seems to be.  I wonder what salvage value would be?  Would that fall under the car exemption or assets? 

Anyway, we are paying too much for (too much?) life insurance right now but that was part of the frenzied new-baby must-do-something-ANYTHING kick.  Now that the panic has subsided, we should reassess.  But in the process, the nice people at MetDesk told us that Down Syndrome was the "Cadillac of disabilities".  At the time, pre-heart-surgery, spending eight hours a day trying to keep my girl growing (no exaggeration), I thought that was a silly thing to say.

But Cate said something very similar here (12/29/10).  [Given my newly-learned internet rules, I'm supposed to ask first. Um, ok w/you?  Sorry?].  I think we're floating around on the far reaches of the special needs community too.  My girl is happy, engaging, able to communicate (via sign), affectionate and no more "work" / "effort" / "involved" / ??? (that's a linguistical landmine) than any other 2 year old.  Especially now that her heart's been fixed.  Even before, in some ways, she was easier than her brother who never stopped screaming.  Certainly less than my purely hypothetical 20-something claimant.  And this is also probably venturing into minefield, but if my girl's gorgeous face looked a little bit different, my club pass would probably be rescinded. 

At least for now - maybe - I don't know - we haven't started school yet...
hell... 

No punchline either...
And I'm going to sign off on that incredibly vague, unsatisfying note.

Friday, January 7, 2011

Prioritizing

I was thinking about my biggest stressors right now, since I've been such a grump, and the only one I can do anything about is work.  The money thing *sigh* I can’t fix and it’ll get better eventually. The gazillion other things are just a subset to the money thing (can I write thang?  I'm thinking No.) – things that need replacing, fixing, etc. The increasingly shabby condition of various items?  Are not critical to a happy home.  Having a non-irritable mommy IS.

I gave my husband hell once when we were talking about his job/schedules, etc because he said something (probably totally different) but what I heard was his job takes priority (right now, over kids’ schedules). Settle down, it wasn’t that bad, it was just his phrasing in the first pass did not meet with my approval.

So it is with a massive slice of humble crow pie that I’m going to admit I really need to focus on work right now. I won’t bore you with the inane details of what’s I need to get done, but it is weighing on me.  And it’s the only thing I can fix.  Hubby would argue that I always say I’m behind but the nature of the biz usually hovers between orange & red on the alert scale - right now I’m under martial law.

The kids, as they say, will be all right.

[BTW, that movie got great reviews. I love everyone in it. But I just saw over the wkend and thought it was awful. They go thru a “rough patch”, JMoore cheats, then it’s all just magically OK?  Gah.  Let me tell y’all about rough patches. It wasn’t even funny].

So [skip ahead, this is note to myself] Friday - bills.
As a bonus this will result in clean bedroom as we moved all bills/papers out of the guest room/office for our visitors and a few errant footsteps + one toddler on the loose has resulted in vast expanse of paper spilled across our master bedroom. I wanted to make a joke about our new (processed) wood floor but ….No.

Sat morning – found a do-it-yourself doggie wash place. Our mutts are WAY OVERDUE and can’t wash'em at home if the hose is turned off because we live in flyover country where it freezes.  Drat.  As a bonus there will be less nastiness in the house.

Sat afternoon – husband will be at work. I will spend quality time with my children building organic origami playtoys. Hahhahahahahahaahhha.

Sun morning – Will haul my butt into work.

Sun afternoon – Quality time! Will corral son into writing thank you notes.  At least one.

And I’ll move my girl’s cardio appointment again (oops!) and ask her daddy to take her in on his day off.

See? All I needed was a plan.  Instant mood improvement.  
THE BATTLE OF WATERLOO



[Totally stealing this joke from my brother].




Later...Edited to replace random, possibly purloined, Plan of the Battle of Waterloo with free map from wiki.  The first map was better. Tough. 

Wednesday, January 5, 2011

Update

By way of explanation, my husband has Monday/Tuesdays off and I usually work 4-tens so have been taking Wednesdays off.  Before he went back to work I had Fridays off which meant EVERY weekend was a holiday (yeah!)...but Mondays were hard.  I know this is one of those "my tiara is SO heavy" moments but when he got his job it was the first time we had to stash the kids anywhere.  In a freak bit of luck there's an excellent inclusive pre-school/daycare nearby but they didn't have room on Fridays so I switched my day off to Wedn.  This has worked out brilliantly because we were able to ease our girl into daycare just twelve hours a week.  (He doesn't start till 12, they close at 6.  The boy's been hanging with his cousins after school). 

Nevermind that I see my husband exactly never.  We agreed, with varying degrees of resignation, resentment, and sulking that it was Temporary and Best for the Children but yikes. 

Except instead of working 10 hrs on Thurs/Friday, I have to leave about 2 hours early to make sure I get there before 6.  That, plus some increased work, and probably a little bit too much time online in the morning and I'm behind.  Noticeably behind.  Can no longer fix in one Saturday behind.  The school had freed up some room in January so I set up our girl for an extra day "just for a month", so I could work on Wednesdays and catch up.  Except I played hooky this Monday because I hadn't spent 24 hrs with my husband in 4 months.  Also because I was up till 1am and knew I had Wedn covered.  Also next week is Special Day at the boy's school + girl's cardio check up so will have improved exactly nothing in the first half of January.  Hence the source of some of my ranting earlier today.  Guilt, all around, but right now especially with my fabulously lenient employer who I am abusing. 

I'm not a big fan of the (now) Wedn-Thurs-Friday gig.  Bless all the single parents out there... I feel bad about leaving early, tired from what time I did put in, and am scrounging around offering the kids cereal and canned fruit for dinner because no way I'm spending the extra 2 minutes to saute a veggie.  They're tired, hungry, and clingy too.  But I'm busy wondering how early I can pack them off to bed without triggering State intervention.  On these days, only basic needs are met - subsistence living. 

But tonight... at risk of high cheese factor here... was awesome.

The boy's been working on a "Me" poster for school.  Tonight he asked if he could cut up an extra Christmas card so he could glue on a picture of his sister.  He's fine with her but they don't really have much in common.  He's starting to express a little excitement when she's signing something he knows but otherwise they seem to travel in separate orbits.  [So does that make me the sun?  a narcissist?]  I've had to request omissions be corrected in other family drawings.  But tonight he wanted to include her, unprompted. 

And tonight, when reading Moo, Baa, LaLaLa, my baby pointed at the inside cow with her pointy finger, then turned the book back to the cover and POINTED AT THE COW ON THE COVER.   THEN REPEATED THIS WITH THE SHEEP.  (she wasn't so much into the singing pigs). 

My heart burst.  I've still been trying to get a video of her using her index finger (the previously promised Great Reveal) but MATCHING things takes this to a whole new level.

Facing Down January.

[I wonder when I'll be able to use that particular directional word without wanting to provide additional commentary.  Or at least make a joke]
~~~~~~~~~~~~~

I’ve got nothing today.  Busy being grumpy in that two-three months-till-spring post-holiday everyone’s-gone-home slump.  Me and half the rest of the country.  Half?  60%?  70%?  I wonder how to google that…. Number of Sad People in January?

Just did:  January Slump is an economic term. Seasonal Affective Disorder is, of course, a real (though I suspect a little mockable?) diagnosis.  Fabulous, even my emotions are geeky & commonplace.



I also googled to get the picture… Did you know "Special Snowflake Syndrome" is a real phrase?  Worse, someone wrote into yahoo for a definition.  Also wondering if I need license to use (again with the geek).  I didn't crop the source out, so am providing proper credit, and have received (and deleted) a gajillion times as jpeg attachments in email forwards so not entirely sure they can claim sole rights... I suspect they aren't going to send the feds in after me.  Complaints can be addressed to getalife at seriously?.com. 
[BOY, I am cranky today!]

I just want more TIME. So I don’t feel like I’m choosing between work, kids, me-time, husband-time, and spending time scraping the top layer of filth off our house.  And universally shorting everyone (me included).  Nevermind I should just take the dogs for a walk (exercise = happy people + content non-aggravating dogs).  I hate it when solutions are so self-evident.  Anything that obvious must be wrong. 

So in lieu of the serenity prayer – because we already know I’m lacking the key wisdom piece, I offer this:
Twenty Ten Sucked Ass
Resolutions Aplenty
To Fix? Stop Sleeping

Tuesday, January 4, 2011

Mad Scientist

After repeated (read:  hourly.  For a WEEK) requests, I finally agreed we could do the rock crystals.  They didn't include the promised plastic rock-growing tray so I had to use my custard cups because I'd stalled on the es-periment long enough and had opened the box.  And everyone knows, once you open the box, there is no retreat, no deviation.  I sure as hell hope those crystals pop right out because I want my popover cups back.

He was very concerned about how he looked in his safety goggles. 
Do I still look like a scientist if they're up like this?  No?  Over the eyes?
They usually work better that way. 
 Waiting... the box said 3-4 days.
An eternity in 5 year old time.

The popover thing is a joke.  EVERY year I try to make popovers for the holidays and EVERY year something goes wrong.  Burnt - can't measure the three ingredients properly - burnt - tough like leather - have to scrape from side - burnt (trending...burnt?).  Thankfully my family can roll with the punches so we have back up carbs10 and they appreciate any opportunity to make me a punch line.

And now, if you'll forgive the indulgence, a photo montage of my little dancing happy princess.
Because I cannot cull or edit.




Monday, January 3, 2011

Congratulations

...to my little sister and her (new!) fiance.
Break out the tulle and candied almonds!

Of course this means I'll have to finish scanning all the childhood pix because nothing says
Sisterly Love like an embarrassing photo montage on the Big Day. 

2008
 2010