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.

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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.