Little Idea(s) about School

Two weeks ago I went with The Girl's kindy teacher to hear Patti McVay talk about inclusion.  If you have a child with special needs - any kind - you should listen to her.  Her presentation at the NDSC convention in Denver left me in tears and I started to get choked up again this time but pinched my arm and stared at my shoes till it passed.  She is a true believer in the power of an inclusive education - not just for those with IEPs but for the typical kids too.  She talks about how to make it work with behavior plans, modified work, para support, etc.  Listening to her it all seems quite reasonable, easy even.

She stressed and I have heard over & over again that every study ever done confirms the benefits of inclusion. 

But I get lost in the details.  The fact is my daughter has an IEP because she has certain delays.  She needs extra time and practice to pick things up.  Her biggest delay, of course, is that she's effectively non-verbal and inclusion be damned but I would cut off my own arm if I could get her in 5 hours of speech a day.  I think the answer to that would be she's not going to learn to talk sitting in a back room with a bunch of other non-verbal kids, but she WAS in daycare and preschool with typical kids and the only thing she picked up from them were cold germs.  Be it motor planning or low tone, she's going to have to practice-practice-practice and work 50x harder than other kids to learn to enunciate.   She is using an AAC but in my mind little will affect her ability to be meaningfully included and to eventually live independently more than her ability to speak clearly. 

But I have no idea how to make that happen.  She's already 6 - I don't know if it will happen. 

And 5 hours of speech therapy/day does not make for happy, well-rounded children or fiscally solvent families so...  we're back to the inclusive class.  Thank God for Apple & Proloquo. 

Going into this year, the school and I did try maximize her time with her peers.  We cut PT in half and what's left is push in, half her OT is push in (which the kindy teacher was thrilled about), and I think about half her speech is.  I think Patti would ask why it isn't ALL push in.  And she'd ask why The Girl is still spending time in the SpEd room.  (Or resource room. Or whatever the hell they call it).

At the workshop I asked what the SpEd teacher was supposed to do if kids were 100% included. The answer was co-teaching.  I have no idea what co-teaching looks like.

So I went out to breakfast again with the most fabulous SpEd teacher ever and asked, ever so delicately, what she was doing with my kid.  Last year this teacher gave my child a voice - she's the reason my daughter uses Proloquo.  Did I mention I love her?  This year she's teaching my daughter to read.  And do math.  But, most of all, she is teaching my non-verbal 6 year old to read.  Oh, my heart. 

I have no idea how that happens.  I have no teaching credential or educational theories on my bookshelf but reading is right behind speaking on my list of hopes & dreams for my girl.  I tried to work with my son when he was making an awkward transition from "See Cat Run" to full sentences but only managed to frustrate both of us.  Then his 2nd grade teacher did something magic and it suddenly just clicked for him.  I don't think it will magically and organically click for my girl though. 

One of the sessions I went to at this year's NDSC convention was on teaching kids with Ds to read.  The presenter opened with a story about watching the kid with an IEP get pulled out for "therapy" just as the other kids were sitting down for story time.  Which seems a wee bit counter-intuitive, even to me.  Inclusion, right? 

Except she went on to say that she's never had a person (some were adults) not learn to read, but sometimes it took a LOT of practice.  Annndddd..... we're back in the resource room. 

I laid out my angst on Facebook and the general consensus was that a little tutoring isn't a bad thing (also that calling it tutoring makes it sound better).  Which is the place I keep coming back to too, though I feel guilty for being OK with this knowing how hard other families have fought for a 100% setting.  I have no idea if The Girl's current SpEd/gen ed ratio is ideal for her.  I have no idea how long it will take her to learn to read.  But I DO know both her teachers care about teaching her.  I know that matters.  I hope it matters enough.

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

Speaking of books, The Boy and I just finished Percy Jackson, which had immediately followed Harry Potter.  We needed to give the magical superpowers a rest before Narnia or The Hobbit and I thought Little House on the Prairie would be nicely grounding.  My copies were given away years ago but I decided we'd skip the library & ordered the full set on Amazon.  I thought they'd be nice to have around... for both my children to read.  They arrived today.

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?

Rambling

The weeks have been flowing by so swiftly I'm starting to lose my footing.  Emails aren't sent, errands are forgotten, FB is ignored (the horror!), and I'm certain I still must be only 33* or so but next month I'll have yet another birthday and my brief time on this planet is that much less.  In the movies they always show those quick short cuts of daily life - happy, sad, or otherwise...work, commute, dinner with the kids, repeat - right before the calamitous plot twist.  Daily life, interrupted.
    *I'm no where even close to 33.

Let's hope for no more plot twists.

But we need a little bit more life around here, yes?  Daily life, elevated & constructed into something blog worthy?

Shall I blame the job?  Maybe.  Given the choice between staring slack jawed at the second hand as it sweeps around from 4:59, and the current all consuming "Hell, how did it get to be 4 already?", I definitely have the better deal, and it's not always this busy, but I am d.o.n.e. when I get home. 

But it hasn't been all work.  The boy & I have been reading Harry Potter together at night - two weeks ago we reached the end of Book Four, I turned off his light, then I abandoned all restraint and spent the next 4 days reading ahead to the end.  Not to worry, the kids were perfectly happy eating cereal & PB&Js, and I'm sure they they picked up some valuable life skills in my (emotional) absence -   don't keep PB in the fridge!  Also, if I know you IRL, I apologize for the recent heavy HP references.  And last?  The book made me a wee bit sad for all the moms, me included, who couldn't keep their babies safe with the magic of love alone.  Leave it to me to get weepy over a kids book.

What else?

On Friday I hit another work-i-versary and was gifted with a bunch more vacation time which I immediately started burning by flying to Los Angeles to see Gigi.  She's not doing well and she is quite explicit about wanting to leave us.  I find it hard to reconcile these two ends of the disability spectrum - my daughter, just starting out, and Gigi, who was ragingly independent for over 90 years and is suddenly, profoundly not.  Her heart is strong and her pain is, we hope, well controlled - I believe her wish for an end is a direct function of her lost independence.

There's obviously no easily framed picture of disability.  Everyone draws their own lines of what is and isn't acceptable, of what is and isn't compatible with life.  Decent people don't try to inflict their lines on others and I suspect most find the line to be a mirage anyway - if they get up close it dances off again.  You adjust, adapt, and find joy where you can.  I don't know where I'm going with this...  It strikes me as naive to wish a 94 year old woman rally but her new world isn't dramatically different from those of several children with significant needs I follow here on the world wide web and, well, it's difficult.  I want to respect the feisty woman she is, I think she's earned the right to go out as she sees fit, but there are great grandchildren to admire, the smell of toast in the morning, and the sound of the wind in the eucalyptus trees in her backyard.  

3/31 - Favorite Book

This is The Girl's favorite book. It is charming, reads like poetry, & hasn't gotten old even after 754,456 readings. This is our second copy - the first crumbled with heavy use. I'm not sure we'll need another one though, since I can now recite it in my sleep.

And speaking of which, the last couple late nights have caught up with me so as soon as I'm done yelling at the TV (presidential debates tonight!), I'm going to toddle off. Hopefully with only minimal snoring.

A weakling makes trouble

Has it really been 2 weeks since I've filled your screens with joy and mirth?  Longer?  Oh, I've never done that?  Ha.  Hmmm, sorry.  Funny clown? 

[blah, blah, blah...]  Excuses for not blogging:  Other than a week of the Family Flu, I'm mostly going to blame my new 4-10 schedule, because it's really been closer to 4-12s, plus a long-assed drive home.  Taking almost a whole week off to serve ginger ale to ailing little people, only a couple weeks after taking a week off for the holidays, is neither an awesome career move, nor a path toward inner balance and harmony.

And I'm terribly behind in my blog-reading so please accept my apologies if you've missed my always insightful and amusing comments.  I still love you.  It's not you, it's me.  I know that post you wrote about that thing was brilliant.  And funny.  Oh? That post? Yes, that was heart wrenching.  I cried.  I have it flagged and starred and bookmarked to revisit but if I don't write something today Gigi will have my head, and THEN where would we be?  Headless, and unable to laugh or cry at your posts, that's where.

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

But while I've been offline and cuddling with little people on the couch, I have been doing quite a bit of old-fashioned reading.  I gave away almost all my books last winter, resigned to world of board books and six word sentences, but whether the kids are better able to entertain themselves or I'm just slacking in all my other duties (the latter), I'm almost half way thru this year's Christmas book stack.  And all of these books have been swirling around in my head, lending a dreamy quality to the last few weeks - or that might still be the flu talking.  I don't think I'm going to land anywhere particularly insightful, but this is what I've been reading: 

Game of Thrones, book one:  My brother promises me books II and III are in the mail.  Just a good ol'fashioned fun read with dragons and a map up front - My brother's new thing is books with maps. Seems as good a criteria as any.  Disability themes with both Tyrion Lannister, who's a delightfully snarky little person, and one of Stark's sons, who is pushed out a window and becomes paralyzed.  I'm not going to go digging through all 700 pages for the exact line, but Tyrion points out that it's a lot easier to be him since he's rich - money buys respect and protection; other families might have left him out in the cold.

Given all the cutbacks in early intervention and other state services, he's not wrong.  I just wrote a large check to our speech therapist last night.  I would've liked it to be bigger, for my daughter to see her two or three times as often.  To see the OT there too.  I'd really like to pay them to move into our guest house (along with a private chef and massuese for me) so they can see her daily, and I'd like to build a private inclusive/mainstreaming school where I can cherry pick "typical" kids who are especially kind so I don't have worry about bullying.  And I'd like a dragon out front to keep the creeps away.  *sigh*

Girl with the Dragon Tattoo series:  Also fun.  Though highly disturbing theme of abuse in various forms, particularly of those in state custody/guardianships.  I'm likely the last person in the western hemisphere to have read these so I don't think I'm giving anything away here, but I was left a little -something- at the end.  We all root for the girl and she prevails, despite clearly being autistic (or somewhere on the spectrum), because she's smart.  The bad guys assume she isn't, because of her emotional issues, she fools them because she is, and wheee, nothing else matters because look at those neurons fire.  Who's going to rally around the girl who can't hack your computer and steal a hundred million dollars?  I might be a bit biased about IQs these days.

Life as We Know It, Michael Berube:  A work of genius.  I can't believe I hadn't read this before now.  The brutal truth is that no one is ever happy to set off down this path with our children.  We find happiness along the way, see secret magical parts of the forest that ordinary people on the highway aren't privy too, but I haven't read of anyone who cracks open champagne immediately upon learning about that 47th chromosome.  And when I say this, I by no means want to trivialize anyone's journey because if you HAVE found that secret magical place in the forest it is cause for celebratory champagne, but most stories I've read, ours included, are variations of we were sad, we got over it, & look how cool our kid is!  Allowances for health concerns and writing skills.  This is SO.MUCH.MORE.

Walk on Water, Michael Ruhlman:  Close up look at pediatric heart surgery.  I was again reminded how incredibly fortunate my daughter is to have been born into a time and place that allowed her heart to be fixed and that it was found to be worth fixing.  Had she been born when I was, the hospital staff may have suggested institutionalization.  Even if (horror!) we had agreed, it wouldn't have lasted long because she would have shortly died of heart failure.  I know I've mentioned this before, but it continues to astound me.  [Without getting religious on you]  There but for the grace of god...

This book focused primarily on one doctor, whose primary focus appears to be arterial switches.  ASDs and VSDs are mentioned but not once did they mention AVSD, which is what my girl had.  That particular diagnosis is strongly, though not solely, associated with Down syndrome.  The author mentions Ds twice.  Once simply in passing - as in, patient A (w/Ds) was in Room 1, patient B (whose parents he actually talked to) was getting fascinating operation done in Room 2.  The second time was a quote from the surgeon, originally from New Zealand, who went to work in Melbourne, "it was considered silly to operate on a Down's, but the parents loved these kids." (sic)

How novel.

The book was written in 2003.  The doctor was in Melbourne apparently in the 1980s.  For all my marveling at our good fortune, that's not too long ago.  And for my family, who may have missed all the hullabaloo online, variations of this continue today.  Amelia has a rare genetic condition and needs a kidney transplant.  Apparently not one from the national pool, where it could go to the next nuclear physicist instead, but one donated by her own family, who might see their little girl as precious and worth saving, despite the unlikelyhood she'll later embezzle several hundred million dollars or build a better bomb.  In fairness, there are probably other factors that MAY make her ineligible for any transplant but that's not what the mom heard.  And in the book, Walk on Water, they covered one otherwise "normal" teenager who needed a heart transplant but was first forced to take an IQ test because, as his own heart was failing, he'd suffered several stokes which might have affected his future bomb building abilities.  Not in the 80s, just 10 years ago.

I get that organs are painfully rare and every day people die waiting for one.  There needs to be some sort of selection criteria, or else po' people are going to start waking up in tubs of ice in dingy hotels missing important internal bits.  Or not waking up at all, if the wealthy need hearts.  But in the 80s, in Melbourne, some doctors didn't even feel it was worth a few hours of their time to close up VSDs in kids with Ds.  The same country that recently nearly refused a doctor permanent residency because his son had Ds.  I don't mean to single out Australia; Denmark has its own eugenics program running.  And this fair country produces people who use the term "non-person humans".  It's exausting, this.

Now that I'm working 4-10s, I have Wednesdays off and we're going to start visiting the library.  Last night we picked up Charlotte's Web and I started reading it to my son during my girl's speech therapy.  At least one other special needs mom was within hearing distance. 

Well, [said Fern's mom] one of the pigs is a runt.  It's very small and weak, and it will never amount to anything. So you father has decided to do away with it.

 Holy crap, y'all.  I nearly started sobbing in the waiting room.

Reminiscences

I had to go into work this morning which was exactly as much fun as it sounds like.  Driving home I caught the tail end of this NPR program:  To the Best of our Knowledge, which I'd never heard before.  At the end they read the short story, Reversal, from David Eagleman's Sum, which was marvelous, and of which I also had not heard - which is one of endless reasons I love NPR.  In it he wrote:   

At some point, the expansion of the universe will slow down, stop, and begin to contract.  And at that moment the arrow of time will reverse.  Everything that happened on the way out will happen again, but backward...

You suspect [your life] will really be understood only upon replay.  But you have a painful surprise in store.  You discover that your memory has spent a lifetime manufacturing small myths to keep your life story consistent with who you thought you were.  You have committed to a coherent narrative, misremembering little details and decisions and sequences of events.  On the way back, the cloth of that storyline unravels.  Reversing thru the corridors of your life, you are battered & bruised in the collisions between reminiscences and reality.  By the time you enter the womb again you understand as little about yourself as you did your first time here.

Which has exactly zero relevancy to blogging.  Ha. 

Red (eyed) Bull

In a freak bit of good luck we were first up for surgery today [minor outpatient surgery on my girl's eyes  - Strabismus Repair, Round II].  Last time we were not first.  No, no - decidedly not first.  Last time we got there at 10 and didn't even start the process till 3ish.  Trying to keep an active 18 month old (at the time) happy for FIVE hours, when her last meal was one state back, was tiring. 

There was no gentle flower eating today

This time we were there at 6 and out the door by 10:30.  Though the last hour or two in the recovery room she was P.I.S.S.E.D.  Angry like a bull trapped in a ring, poked once too often.  We had multiple nurses stop by - is she in pain?  Nauseous?  Can we do anything for her?  Can we do anything for YOU?  (Booze didn't seem to be an option so I didn't ask)  No, she was fully medicated, she was just really, really annoyed with the adults in her life.  She screeched if I tried to put her down but then 30 seconds later would squirm out of my arms.  Except she was still loopy and could barely stand, though would bat away my hand if I tried to steady her.  So she would fall down onto her butt and then cry like she was the most neglected baby in the history of the world.  FUN. 



One of the first books I remember reading
by myself.  This is my original copy...
so it's REALLY old.

 When we got home the girl promptly took a three hour nap and I made Matt divulge the location of the jelly beans.  Though I'll admit my (new) standard-post-hospital glass of Bordeaux did NOT mesh well with the jelly beans. Maybe I should've gone with a white instead? 

She's awake now and alternating between whining, and throwing herself onto the cushions, laughing.  Love that child.  I made a big deal with the anesthesiologist about her neck not being cleared yet - I didn't mention that belly flopping forward onto cushions, beds, & mom is her new most favorite activity.  She especially likes to sneak up on me, causing no end of close calls as I barely catch her in time to avoid breaking her nose on the floor. Or my kneecap.  I'm kinda thinking her neck is probably FINE. 


Since I mentioned the anesthesiologist ...  My MIL came with me during her first eye surgery (too long of a story to explain why) and after the decade long wait for them to start, we were both tired, and, dare I say it? A mite grumpy?  And frazzled?  Then the anesthesiologist came through the door - with a spot light and rising choir music.  He was straight out of Central Casting - Clooney in scrubs redeux (I was a diehard ER fan...watched to the bitter end).  If he didn't pay for medical school by modeling, then he ran up $100k in loans unnecessarily.  But he was a YOUNG Clooney, ink barely dry on the diploma.  And so with my MIL standing right beside me, about to hand my baby over for elective surgery (elective, thus not necessary to maintain life, thus perhaps not worthy of the risk?  What am I doing risking her life just so she doesn't end up with a wall-eye?  Bad superficial mom!)...  So I'm about to hand my baby over to this stranger and am thinking, not necessarily in this order:

Please don't kill my child.

Maannn, you are HAWT  (epitome of maturity, I am)

You are WAY too young for me

MIL is standing RIGHT THERE, she can probably read your mind.

You are WAY too young to be a real doctor

Please don't kill my child.

OHMYGODWHYAMILETTINGTHEMDOTHIS!?

[Yes, Matt's heard this story.  He also shared his jelly beans with me today, so must still like me despite my brief, parentally-supervised, wandering eye].

At least it was distracting.  This time the sleepy time doc had, if not an actual diagnosis, then at least some pronounced social tics.  And, um, while I'm sure he's a very nice man, a Clooney clone he was not.  We'll know in about three months whether or not this fix stays fixed.  Highly amusing was the doctor's answer on how often the second repair needs to be repaired - 10%.  *sigh* 

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

Totally unrelated & on the list of things you never thought you'd say:
To the boy, trying to avoid bedtime tonight by "helping":  STOP DOING THE DISHES!

On being prepared.

So my girl really IS sick after all, making us the those parents that took their little viral vector back to day care yesterday to share with others.  Though in our defense, she did.not.stop.moving Thursday while she was home "sick".  To wit:

Matt said her nose was a little runny at drop off but she was still happy & energetic.  She'd been put in daycare time out for, um, GI reasons, not snotty-nose reasons - unrelated, right?  Apparently not.  We got a call at 4:45 yesterday, as I was already in the car heading home, that she was on the floor crying inconsolably.  Nothing like being an hour away from sad-baby to bring on the mommy guilt.  By the time I got her home she just looked miserable and had a slight fever - also, oddly, her eyes were crossing more dramatically than even before her first eye surgery.  From fatigue maybe? 

For some reason, even if this turns out to be nothing, it's left me overwrought and jumpy.  Watching the news of the earthquake and flooding in Japan emphasized how very fragile and tenuous our spot on this planet is.  The earth can literally fall away from under your feet.  Or you can get a cold and land in a hospital with pneumonia (ok, it was RSV, but still...).

There was a line in Alexa Stevenson's book about Minnesota commuters driving home fretting about their job, their marriage, & their shopping lists - right before the I35 bridge collapsed underneath them.  She said that of all the things they were worried about, the bridge probably wasn't one of them.  [Unlikely I got that exactly right, I gave my copy to Mom - apologies to the author].

That line had stayed with me.  No need for Freud or Frasier here - we've had our world fall away more than once.  Brennan was kicking away one night and the next morning at the OB's office he was gone.  Less than three weeks before his due date.  Less than a week before the 'give or take two week' window bracketing that date.  When pregnant with my girl we had a negative quad-screen and not one, not two, but THREE clear ultrasounds - three clear high risk Level II ultrasounds (they were looking for other things).  Not a single soft marker to be found.  I was finally starting to relax (about the pregnancy in general; DS had already been ruled out - ha!) till the extra long fourth ultrasound when they noticed the massive gaping hole in her heart.  Surprise!  And then, most recently, 48 hours of sniffles landed her in the hospital.  So as much as I try to roll with the punches, they keep coming from darkened corners.  I expect to be caught unawares so spend my commute wondering what I haven't thought of yet.  Because if I can put it on the list of horrors considered, then fate's less likely to send that one my way.  Because fate likes to be a sneaky little b----. 

Ironically, I don't consider myself to be either anxious or superstitious.  Or crazy.  As nutty as that last paragraph makes me sound.  Hmmm... How about preemptively & proactively prepared for trauma drama? 

And just so we don't end up on a down note (ha!  Will that ever stop being funny?), here is gratuitous shot of mommy love:

In Memorium

The night before last I had a lovely evening at a wine bar planned before the oncoming Throat of Fire made me the least fun girlfriend ever.  Sorry *yawn* /shiver shiver/ you were saying?  But before I picked up my friend I did what only a month ago was unthinkable...

The book fair drop off was at a loading dock deep underneath the local mall.  Little creepy and too behind the scenes.  I worked one summer at EuroDisney when it first opened (might be dating myself there) - same rabbit warren feel.  I expected my 7 boxes would be a decent addition but they were barely noticeable. 

All those books just left there - Abandoned. And, worse, weirdly stacked, breaking their spines. Not to be overly dramatic but they seemed desecrated.  Callously strewn about, like so much trash.

But not really, they're going to a good cause.  To be read again and re-enjoyed. Phoenix rise.

I gave one other box of all my Latin American lit to a friend - Gabriel Garcia Marquez, Borges, Pedro Paramo, Isabel Allende, etc.  And Julio Cortazar - Hopscotch. I'd read this during spring break one year.  I remember my roommate was off working so I was alone during the day.  The details had faded but I still remember that week of soul sucking emptiness.  I just checked Wiki for the actual plot and, um, yeah - won't be re-reading that one.  But really, D, it's a GREAT book. 

I also gave her some lighter stuff too (Amy Tan, B.Kingsolver, etc), lest it all be Too Serious. I think I did at least.  The stacks and boxes got a little blurred at the end. 

To the book fair I gave a whole bunch of cheapy "airplane reads", history books, and lots & lots of random novels which may or may not have been read and/or appreciated, either by me and/or the critics at large.  I resisted the temptation to pilfer through the stacks and stacks of books already there, but did notice someone was also giving them a copy of Seeing (Jose Saramago; which I did like. Thought History of the Siege of Lisbon was fabulous). 

I sent Half Baked back to my mom who'd sent it to me originally.  I have more to say there but it'll have to wait (beautifully written, btw). 

I kept some random Serious books that I always think I should meant to read but never got around too.  [ed. but forgot to upload the photo. Doesn't matter.  Let's just say not light reading, but without the pretentious photo since I've probably owned them for 10 years and haven't read them yet].  Don't even think they're left over from school, just random pick-ups (I also worked for a book store for a couple years.  The dollar bins were always too good a bargain to leave alone). The Bob Woodward book from my brother (so I'll definitely read that one first). Also kept my Bloom County collections, some sentimental books (including How to Knit, in German.  From senior year.  Because that's sure to come in handy someday). Kept To Kill a Mockingbird, obviously. Though it's unclear why I have, and kept, two copies. I resisted the urge to burn my high school yearbooks.  Also on the list of retained oddities:

Tom Clancy, Debt of Honor. I kept this because I'd randomly picked it up for a plane trip not long before 9/11.  It was eerily prescient. 

All my Dick Francis books.  Starting reading him in junior high?  Some of these are, shall we say, no longer politically correct?  Definitely in the airplane read category.  But the lead guy (always a guy) is so stoic. That's appealing (to a 13 year old). 

Bartlett's Familiar Quotations.  It strikes me as cheating a bit. A true bibliophile would remember the line and the source without needed a reference guide, right?  I remember I bought it right after we lost Brennan because I couldn't find the words, otherwise.  Picked  "God's finger touch'd him, and he slept."

Tennyson.  Because of the line above. 
Also, my dad's favorite lines, quoted ad nauseum:
     Made weak by time and fate, but strong in will
     To strive, to seek, to find, and not to yield.

I actually like Invictus better but the movie kind of took that away. Can't really compete with Nelson Mandela, now, can I?
     I thank whatever gods may be
     for my unconquerable soul.

Proof I actually unpacked the car

Late Sunday Afternoon

I should have gone into work this morning but Matt deterred me with a late night movie (Salt - awesoommme!) and the promise of more snow this morning.  I'm easy like that. And though I've been going non-stop since 7 (it's now 4:15), there has been -no- appreciable progress on the state of chaos that is our home.  Is 4:15 too early for a glass of wine?  I did spend a couple hours sorting through and boxing up my books... What I kept and what I'm giving away merits its own post (though it is suggestive of schizophrenia).  I finally turned on Signing Time for the girl on the main floor (LOVE Rachel) and something mind numbing for the boy in the basement, just so I could sit down for a second.  This is mortifying, but I am now "of an age" where being on my feet for 9+ hours make my feet achey. 

But I've no wish to bore you lamenting my domestic duties.  Photos from our snow day on Thursday. 

My snow angel

He had high hopes of a snow fort or, at a minimum, a snowman, but it was parched-dry powder. 

 So instead, he decided to dump it on me.

 100 years ago he would be trudging towards the pole on some Antarctic adventure.

Daddy's shoes

More photos of the kids in their PJs!

 What?  Are you just now noticing how ridiculously cute I am?

And if we're going to get all technical & braggy, the pretend play is exponentially increasing.  Though is using shoes and the phone appropriately really pretending?  Dunno.  Doesn't matter - LOOKIT THE INDEX FINGER!  (and?  dressed)

Also on the braggy spectrum - As part of the book cleanse, I gathered up all the Christmas books.  My girl (naturally) knocked them all off the table and then brought me one to read.  Story about the animals in the nativity/manger (? - sorry, my lack of religious training shines through).  Anyway, there was a cow.  (In the book. I don't know about the frequency of domesticated cattle in the middle east 2000 odd years ago.)  A real-ish looking brown cow with horns. Which looked nothing like the cartoonish black and white cow in Moo Baa Lalala.  I asked her where the cow was though and she pointed.  Wheee!  I remember her brother was late to talk (with the fun associated melt downs when he couldn't communicate) - then he suddenly just got it.  And it was exponential. 

[Would I be negative nancy if I acknowledged this is all receptive and/or signing and not verbal?   Dunno.  I still find it just .... marvelous.  I mean it's not like we have a lot of cows around us for her to be otherwise familiar with them. My baby sister's impressions of the midwest notwithstanding]

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.

The Day After - a relentlessly mudane accounting.

I get somewhere at the end, eventually -

Due to the Fiscal Woes, Santa wasn't able to visit his workroom until Friday.  I thank whatever gods may be for TRUs's 24 hour pre-holiday policy.  We weren't quite sure how this was going to play out with the kids and husband's schedule but I woke up at 4am and was at the store by 5(ish), done by 6:30(ish), and still had time for two other stops.  Think Santa landed some good deals and ended up with a good mix of volume and wow factor.  Biggest hits were the 200 piece Tinker Toy set (because I am a masochist.  Also, disappointed to find out later they were PLASTIC.  The horror! Is nothing sacred?), the crystal-growing kit (everything thinks I'm forcing the educational stuff down his throat but he LOVES it - the crystals got the second biggest screech. Of delight, not horror. Jeez).  And my $40 online find of a mini-camcorder.  The boy loves to make movies but his current kiddie-camera basically captures shapes.  Which may or may not be human.  For $40 I'm not expecting him to become Spielburg, but perhaps he'll make some blog-worthy clips.  It's super-simple (on/record/review) and clicks into the computer to recharge - LOVE that that are no new cords.  Of course once you get it open they "highly recommend" a memory chip, and maybe a battery pack, so maybe no longer $40 steal, but I suppose we'll suck it up.  Lots of volume thanks to the 50% off second Crayola item - art supplies for the year? Stocked.

I didn't spent as much on the girl.  I fretted about this - way to short change A/my daughter with special needs and/or B/the youngest child.  But she has, courtesy of her older brother and via a mix of previously flusher parents and 4 sets of elders, a plethora of shape sorters, toddler-aimed noise & light makers, and more push around/ride upon vehicles than our little house has room for.  In my new fiscally responsible fashion, I'd been keeping a list of ideas and rough pricing.  I'd paged thru reams & reams of catalogues but she either wasn't ready for it or we already had it.  Albeit not always in pink but even if we splurged on a pink kitchen, instead of the manly green & brown kitchen in situ, she wouldn't notice and we would have no place to put it.  I did find some very adorable Melissa & Doug puzzles with textured pieces and a new! and different! shape sorter.  Added to the cornucopia of kitchen play food.  Also - and I say this with shame in my heart - a set of pom poms and a pink feather boa.  I was never a girly girl.  I did not enjoy high school, nor the girly girl cheerleader sorts.  I am under no illusions that the girly girls will be nice to my daughter and, though this is unkind and paranoid, I have no wish she be elected homecoming queen in some token patronizing look how nice WE are plot.  I do not wish to encourage any aspirations of pom poms in her future.  Girls are mean.  But... SO STINKING CUTE.  Those damn pom poms are her favorite present, right after the wrapping paper.

That might also be because Santa forgot one of her presents...on the bottom part of the cart in the TRUs parking lot.  The one push toy that she didn't have, that I thought she'd get a kick out of, was a shopping cart.  To go with *cough* the new kitchen food.  She's always loading up the other push-y toys with fridge magnets and the few plastic figures that the dogs haven't yet eaten so thought the cart would facilitate the process - maybe we could put her to work clearing the floor of Happy Meal toys.  But alas, the missing piece was not discovered till 3am (yes, that would be 23 hours later) when I noticed the girl's "volume" was lower than expected.  At the time, the crushing guilt of not finding another equalizing $50 worth of crap stimulating educational opportunities and then leaving one of the "big presents" behind was of Monumental Import.  Worst Mommy Ever.  After a lavish 2 hour nap, it just seemed like a rather asinine way to lose $30.  Because she didn't notice.  Because there was wrapping paper and ribbon and pom poms, and kisses and hugs, and mom & daddy & brother in the same room together.

We started a new holiday book tradition this year.  Prompted by another blogger, who I'd credit but I can't remember where I read it and many many minutes of google and clicking thru my favorites bar lead nowhere. So, just to keep you oriented, I was up at 4am, in and out of three major stores and back home with the car emptied by 8:30, on Christmas Eve no less.  Super Mom!  It was starting to snow so hubby had to go into work early.  I dashed out again for groceries, came back and loaded the kids in the car as hubby departed, then we stopped by a dollar store at the boy's repeated request.  I don't know how he got fixated on the dollar store idea - the Fiscal Woes have downgraded us to Walmart from Target, yet the dollar store still isn't one of our usual haunts - but it was Christmas, we had a long day ahead of us and no reason not to humor the lad.  I had images of Kelly Hampton's girl buying cute trinkets for her dad.  Except it wasn't so much dollar store as repository of random crap, most of which appeared to have “accidently” fallen off the back of a truck, none of it was $1, and it was busy being patronized by recovering meth addicts.  Yes, I am a terribly judgmental awful person. You take YOUR kids there and let me know how you feel about it.  Anyway the boy was easily talked into writing cards for his cousins instead (which we never got around to either - so many good intentions).

So then, with much fanfare we were then OFF! to the bookstore where I immediately decided that the books would be a surprise next year.  The girl kept trying to run off and the boy wanted a $25 pop up book that wouldn't have even made it home unscathed.  Plus, there were no words in it.  Gigi was always worried my dad's "Assigned Reading" program would ruin books for me but given my collection in the basement, I survived biblio-phile-intact. I love love LOVE that one of my girl's first signs was "book".  I love that she knows what to do with them and will flip through books and even magazines without me.  I love my son's long complicated sentences.  Even if heavy handed (hi dad), I love that I've read most of the classics.  Not that you'd know I know what a complete sentence is by reading this, but the kids' books will have words, dammit.  This didn't go over well in the middle of the store and it was only by threatening Santa and conceding on a (cheaper) Club Penguin thing, in addition to "real books", did I avoid dragging both kids out of there by their hoods.  Screaming.  On Christmas Eve.

Anyway, stayed up till 4am wrapping presents and putting annoyingly effusive bows on all of them.  Betcha didn't think I had a Martha streak?  Christmas morning is all about the presentation.  Also there was the summer in Macy’s gift wrap department.  Do you remember what you got when you were a kid?  I don't.  Except for the new bike the folks hid in the kitchen one year.  I do remember the anticipation and giddiness when looking at a big pile of boxes & bows.  Which is why I individually wrapped every box of crayons and carton of paint.  Which is also why daddy rallied when he got home and put ornaments on the tree (we'd held off due to Little Miss Destructo).

After my aforementioned super-refreshing 2 hours sleep, we did Christmas morning.  In all its pageantry and excess and glory.  Then Daddy had to go to work so we took it easy and eventually made our way over the Auntie A's house.  Had snacks, hung out, waited for daddy to head home... we'd planned on a late dinner because of his schedule but I'm usually long asleep by 9pm.  By the time he arrived and the food was laid out, I'd hit the proverbial wall.  Nothing looked the least bit appetizing but I took a token slice of filet (oh! the suffering!) and tried to remain upright, assuming my marathon Santa act was catching up with me.  I then draped myself on their couch but was feeling worse...and worse... until I insisted hubby escort me & the babe home and I immediately puked all over their driveway.  Merry Christmas!  Grab a bucket!

Which meant that the in laws took the boy to an all day brunch at the other SIL's house Sunday by himself.  Husband went to work.  My girl stayed home because of her disdain for the extended family (and also, the stairs) but she was happy to roll around in the as-yet-uncollected wrapping paper and show off her pom poms.  And I was "Sick".  Maybe not with the bunny ears, so just Sick, but still not exactly incapable of running the washing machine or maybe collecting the wrapping paper.  Which I did not do.  I spent the ENTIRE day reading the archives of another blogger.  Who'd been writing since 2006.  Like I said, the reading obsession had to be re-directed somewhere.

Occasionally I'd check comments and recognized other bloggers (the first step is to acknowledge the problem).  Also I'd click on links and blog rolls and I realized something - in all my www-reading, I actually read very few blogs about DS.  Other special needs - sure, lots (other peoples’ problems), funny blogs, two fashion blogs, large/commercial/semi-professional blogs, but only 3-4 blogs about kids with DS.  I recognize the other sites, have idly perused them but, whatever the reason, haven’t stayed.  I’m not going to insult anyone by saying they were too-this or too-that, though a few were too Jesus made my cereal EXTRA crunchy this morning. Sixteen exclamation points! - I suspect I just wasn’t ready for the party.  Why is probably a whole different post.

Also, not unrelated, many have been abandoned.  Not that the internet isn't littered with other orphaned commentary but the trend seems to be baby arrives with a diagnosis, we are sad, we love our child, we document various emotional adjustments.  Then the thing that is DS eventually fades away, becomes less note-worthy, less exceptional, and Life Goes On. (sorry, couldn't help the last bit).  I also wonder if the opposite might be true - if the hurt moves to a darker place.  Becomes less semi-funny stories about intrusive elderly ladies in the grocery store insisting you have a Very Special Child and more about the slings and stones of the playground, widening gaps, exclusions…a thousand tiny wounds.

Also, not insignificant, is that I cannot remember the last time I had an entire day of leisure to read through four years of someone’s life.  Even if it was at the expense of the laundry and dishes and uncollected bits of ribbon.  It IS like dating – you’re not sure if new bloggers (me – who wudda thunk?) will stick around for the long haul, and the old hacks have lots of luggage to sort though, stories to catch up on.  Which requires (this might be beating the metaphor to death a bit) a commitment.  Of time, if nothing else.  And maybe I could have been reading an actual book which I just got done complaining I didn't have time for, or should have been doing flashcards with the girl,  instead of internet stalking dating perusing but she was still on a Santa High and busy reveling in the wrapping detritus and new stuff.  She’d come over, give me a hug, we’d sing a song, she’d laugh and laugh, then spy the pom poms again, and would be off.  Because it’s not always about the DS or the therapy.  It’s about the kids, and Christmas, new books with words, and new pom poms, and crystal growing kits.

Merry Christmas.

Big Cardboard Box

One of my favorite books is Little Boy (by Alison McGhee) - about a boy & his big cardboard box.  My little boy actually prefers the little monster books more but sometimes I'll assert my parental rights & pull it out.  Even if he's not into the writing, he LOVES the real thing.  And, as part of our clean the basement effort, in addition to me contemplating my book stash, my husband has also finally released the ginormous TV box for general use.  You know, the TV that's so old it's dying - we still have the original box.  I make fun of him for hoarding, but I just disclosed my book fetish so I suppose I'm on thin ice (badda-da-dum).  And the boxes are arguably just as useful...

This is the boy's TV.

[No, this is not a commentary about our poverty]

He and his cousins cut it up so they could do Shows.

Here he is giving me a cooking demonstration.

A much needed one, some would argue.

 The Artist, disturbed.

 ...by Baby Godzilla

 But so cute, who could stay mad? 

Here she is, practicing her Wheeeeee!

Presumably in preparation for her next gleeful city-stomping.

 Which she finds incredibly funny.



Tangential Tree Texts

7pm:  edited to include photo of my gorgeous puppy, Max. 

I still can't talk about the car(s). I just.... SERIOUSLY!?!? I think the TV is going out now too. I think we’ll start running numbers on what other durable good will die next. Maybe that’s how we’ll fund the replacements. Till the authorities crack down on illegal gambling in [our tiny town]. At least we’re entitled to free defense counsel.

But anyway I was thinking about the text books I fell whilst giving up the other morning which, in mom-like fashion, is related. My mom's stories are like trees, branching off into ever-more remote tangents - awesomeness, even if phones calls have to be carefully scheduled away from work and distracting small children. (hi mom! xoxoxo).

In SoCal we had a loft with a wall crammed full of books, which were sadly boxed up when we moved to Flyover Country, 6 months pregnant. We got an estimate to put shelves in what eventually turned into the toy room but apparently the guy was going to build it with hand-watered teak carried out of the hills by genetically engineered unicorns. And by that time we'd put in a fence for my dearly-departed-much-missed dog Max, the wall for my not-quite-fulfilled-dream of garden terraces, and new counters. You wonder why we're in trouble. Any-who, we dropped that idea upon receipt of the estimate & as I was nearing D-day. When the boy arrived, all plans for shelves - and regular showers - were forgotten as we dug in under the incessant screaming.

I say 9 months of screaming but actually, around month 7, he started being pleasant for about an hour in the morning before re-commencing the screaming. But it was an important beacon of hope as we teetered on the edge. We made it. But you'll notice the 3 year gap between siblings.

And even though the screaming eventually stopped, the hours & hours of free time to read just never reappeared. Nor will they. Not working full time with two kids, three dogs, and a long commute. So now I read blogs instead – short chapter updates in others’ stories, true or not (but naturally all well-written). Easily squeezed into ‘settling in’ time when I first get to work. So what to do with the books? It seems sacrilegious to let them slowly mildew in our basement. Nevermind the boxes are assuredly harboring spider colonies. It's not like I'm reading rare out of print first editions - few are even in hardback. I could buy mildew-free replacements in 11-12 years, when the kids won't want anything to do with me and I'm trying to keep myself occupied while waiting up for the boy to see if he makes curfew. Or hey, use your library card and learn how to save some money for once you spendthrift.  But like any true hoarder I drew comfort from their presence – a collection of old friends. Even the ones I didn’t think much of at the end, we’d still spent time together. Dated, even.

There's also lost potential there. I was a lousy student and there are some random books on who-knows-what that I always fully intended to…. Nevermind. This is where dating metaphor veers wildly off course.

So the grim reality of our finances and schedule was sinking in when Random Charity called to see if I any crap to give away. I spontaneously said sure. Brave move! I came up with one box. A single box of random, dated, entirely useless “reference” books (using that word extremely broadly). Each of these is a story - Paths not chosen. Tangents.  [Please excuse the cheese – it’s Christmas & I’m feeling sentimental] LSAT study guides, learn to speak French AND Spanish, POST study guides (HA!). Also, random gag gifts (A Man’s Guide to S--? For him. Men: An Owners Manual. Presumably for me).

So the question is – can I take the plunge? Wipe out the spiders’ coven in the basement, to make room for marble runs? Accept there will be no clean, well-lighted place for books* in my near future? Maybe one box at a time. Next up for the offing – all my airplane reads.

*Bonus points for the reference!

Max: