Friday, August 1, 2014

The Summer in Review


My goals for this summer with Eric were pretty straightforward:

1.     Increase his ability to wait without restlessness and boredom causing a tremendous amount of yuck behaviors that then need to be managed by teachers, aides, etc.

2.     Teach him some "boy" things to do, at least get him started.

3.     Improve his ability to summarize life experience and fiction (which is a HUGE challenge, as you either get a step by step massive accounting of everything, or nothing of any importance at all)  by writing book summaries and writing his sister.

4.     Take him to social environments where I can observe his raw interactions with peers without so much intervention on my part.

5.     See if he can swim enough to save his life yet.

6.     Make all of the above seem like we were just "having fun" and never let him know there were "goals and objectives."

---------------------------------------------------------------------------

The pool provided #4, so I killed two birds with one stone there.  He can save his life 80% better than ever before.   His raw interactions are quite raw.  He is terrible when trying to engage other boys to play.  They are dismissive of him because he doesn't understand how their social structures work, and he gets frustrated at their aggression (always it's masked as "play" but let's call a spade a spade, in little boys the name of the game is dominance by physical mastery of sports) and he responds with inappropriate reciprocal aggression and things just go downhill from there.  Granted, at the pool we go to, the relationships of the boys who go there every day are well established, so the core groups are going to be dismissive and hostile to any newcomers, but they were especially disinterested in the "weird kid" who wanted to play with them. 

Much younger girls, on the other hand, he has gotten better at interacting with.  They are smarter, which helps, and don't mind talking all the time, which covers up his lack of conversational skills.  Also, they tend to be more tolerant of his oddities.

There were some interactions with oddball, geeky boys and their dads that went quite well, so that was encouraging.  His inability to throw or catch things is going to always be a problem with casual interactions in a play setting.  He gets better every year, but it's a struggle.

--------------------------------------------------------------------------
I lucked into a way to combine #1 and #2:  fishing.

He hates fishing, but he's spent a great deal of time watching me fish, reading while I fish, breaking heavy metal tools thwacking the rock-hard dirt with them while I fish, lying on the bench or the pier moaning about how long I've fished while I fish, and getting a good look at fish from the outside and inside.  What he does not like is that his rigging gets caught on the rocks because he won't follow instructions on how to properly get it to shore and he doesn't feel like beating the learning curve.  Oh, and sticking worms on hooks is "gross."  He likes catching fish, and he really likes cheering when I catch fish, so I'll take it all as a win.

As to the patience factor...I've put him through a great deal of deliberate immersion in boredom.  He has managed it better and better, as I've lengthened the amount of time spent at each session.  At first, he'd decompensate at two hours, now he doesn't really lose it until six hours or so.  Of course, there remains the difficulty that in order to get him to be patient, he needs a steady supply (about every hour and a half) of things to eat, but we worked out stuff that isn't so health-unfriendly and have managed that problem.

--------------------------------------------------------------------------------

Discovered something about Eric and writing:  he absolutely MUST use a keyboard.  He cannot write at all by hand.  It's just pointless.  His ability to communicate tanks to the point that it's just gibberish, probably because of the motor skills involved requiring way too much concentration.  On a keyboard, he writes quite well.

We had a time starting the process of learning to write outlines.  BUT---he is now on board with the idea that an outline saves time and life energy!

His letters to his sister are pretty funny, I have to admit.  We're up to four paragraphs, amounting to a full page of single-spaced, arial font, full margins text.  He struggles with transitions, but that is to be expected in fifth grade.

-------------------------------------------------------------

We also went to two sci-fi conventions, helped film a commercial for a third, and went to Houston to see the Houston Gilbert and Sullivan Society's production of The Sorcerer.  The first, TimeFest II, even included his grampa having a panel about the making of the new Dalek.  At the second, he won the children's costume contest with his insane Dalek Thor get-up, and had a much better time than at previous conventions.  Again, he had to manage boredom and waiting, but with some strategically timed walking around, and a game of Doctor Who Monopoly, he definitely enjoyed the wait.  The commercial was for Geekonomicon in December, and as soon as they get it edited together, I'll share it on here for everyone.  He tolerated the waiting around of TV filming magnificently!!!  I was very proud of him.  The Sorcerer has its own blog post...if you're curious, scroll back.  It's totally worth it!!!

------------------------------------------------------------------

All of the minifigs have come to "stare at" the giant R2D2
The big surprise of the summer was Legos.  He was given a gift of several lego sets for his birthday, and I gritted my teeth in preparation for having to supervise lego building and lots of wailing and gnashing of teeth.  To my surprise, he was quite self-sufficient, for the first time ever.  I bought box after box, and even though I did have to help disassemble and reassemble some more complex ones, the lessons garnered from the assembly were fabulous.  R2D2 was the only one which required me at every stage, but it had 2127 pieces and deep mechanical parts that had to be right or the stuff would not work.  It's a beautiful thing and when he lined up ALL of his minifigs in a circle to "stare at R2D2," I couldn't help but laugh.

---------------------------------------------------------------

The school year starts next week, and there are many changes that I fear.  Since we watched all of Clone Wars over the summer, I now quite happily have an older Jedi's voice in my head at these moments telling me to "not center on your anxieties" which is a weird effect of watching tv.  It's like a situational earworm that isn't a song.  It's useful, though, for a catastrophizing person like myself.


Monday, July 21, 2014

Houston Gilbert and Sullivan Society's The Sorcerer!

At six o'clock in the morning on Saturday, we stumbled out the door to drive to Houston for what is becoming our yearly pilgrimage to Gilbert and Sullivan.  As anyone who knows us already knows, da Creature is obsessed with G&S and Houston is the closest place I could find with regular performances of the repertoire.  It was a happy find, by the way, as the company has been incredibly kind to my little angel and for that, I will be forever grateful.

I'd like to thank, especially, Alistair Donkin, who has been so giving of his enthusiasm for Eric's love of the G&S and so encouraging both last year and this year.

On to the fun... (after the eight hour drive and a brief stop in NOLA to pick up da Boyfriend of da Offspring, the long-suffering Mr. Bryan Tibbetts, who, as a favor to Offspring, agreed to ride out to Houston with us to make the drive safer and easier.  Bryan, thank you so VERY much!):

First, we had to turn into respectable appearing people


Again this year, we availed ourselves of the Birraporreti's coupon that comes with your tickets for some pre-show Italian cuisine.  It was great again this year!



I can haz "dat Face"

There was still about twenty minutes to kill before we could go up to the pre-show lecture, so we killed it by playing with the giant balls again.




Before the lecture, there was a five minute or so moment of "I'm going to pretend to sleep because I'm bored and a little cranky that TIME exists and "the hours creep on apace..."




Dat face with dat Mama in our seats, excited to be here, and really wanting the show to start!

The opera itself (aside from being Sorcerer, which has an excruciatingly long expanse at the beginning of songs that are, well, to be honest, a bit dull) opened up and hit full throttle at song 13, the song where we finally get to see the Sorcerer (Alistair Donkin himself) and the plot reveals itself and things start to get super funny and super exciting.  By the time we got to the finale of Act I, da Creature was doing everything he could to not sing along with "the eggs and the ham and the strawberry jam."  Singing about food is just too much fun to repress apparently.  :D  He utterly failed to repress it at the finale of the second act and I could hear him singing along in spite of himself.  It was pretty awesome for da Mama, and I hope the patrons around us forgave him for all that unbridled enthusiasm there at the end.  It had been, after all, a rather long day.

In the green room, after the show, the cast were as kind as ever!!!  They signed his score, and posed with him for pictures, and those who had seen his video of him singing Sir Joseph Porter for his elementary school had fabulously kind things to say to him, and it REALLY DOES MEAN THE WORLD TO HIM that you guys do that.  He thinks you're all rock stars, and nothing will ever shake tha opinion of you... You ARE his HEROES.

hmmm...the grammar nazi in me notices I switched pronouns in that last paragraph, but so be it...I DO want the cast to know I appreciate them more than they will ever know.   For an autistic child to love something as much as he does that is, honestly in this day and age a bit obscure, especially in our little neck of the woods, and to be able to drive a bit (a bit?#?#?!) and have his dreams brought to life by living, breathing, singing artists, is a miracle for him.  Thank you ALL so very very much.

Here are his treasures... the pictures he will keep, the memories he will cherish:

Mr. Alistair Donkin, as The Sorcerer!




I will update this post later when I unpack with artists' names and character names.  Right now, I just wanted to get the post roughed out and up. 

Thank you again, Houston Gilbert and Sullivan Society!  That smile up there says it all. 





NOTE:  The companion post to this one (Last year's) was apparently never actually published!  ACK!!! I went looking for it and it was listed only as a "draft".  Apologies to everyone.  I was SURE it was out there.  I went ahead and put it with the date I thought it published on.  D'oh! Link HERE

Monday, June 9, 2014

Over at Dark Smalek, There is a Tale to Tell!

Link:  Time Fest II Wrap Up: Seize the Moment, Exterminate It!

Go take a look, as it involves the genius grandpa and his perfect Dalek he is building.  This is my favorite shot of the day:

Young Davros, the Petit Four and the Betty Crocker Dalek all caught hanging out with Dalek Erik

Wednesday, May 14, 2014

DALEKS INVADE NEW ORLEANS!!!! It's a Catastrophe!! Run for Your Lives!!!!



Oh, that's our Dalek Erik, voiced by the fabulous Lewis D'Aubin, who knocked out this commercial in a WEEKEND of work.  Good gracious me, I have no idea how he manages these things.  Here is a shot of them greenscreen filming in my garage over the weekend...they were VERY VERY hot in the bright especially warm afternoon sun: 

Tuesday, May 13, 2014

AGH! I am Uncatastophe'ed: I have a MELD score of 6

So...a MELD score of 6, you say?  What in the world is that?

It means that I am closing in on the very bottom of the scores that are even on the computer stuff describing liver disease.  Not there yet, so, yay, me!  However, I do have a score, which is new for me.  It looks like, based on a cursory google or two that I'm not even on the radar for the lowest end of the transplant stuff, which is not a surprise, but what was a surprise was that I had a score at all.  My guess is that this is one of the hoops that has to be jumped through to try to get Aetna to pay for the medicine which might kill the Hep C forever.

Dead virus.

That would be a blessing and a miracle.  I have long since reconciled myself to the idea that the Hep C might kill me, but in the words of the very first transplant doctor I got sent to in 2000, I was mostly likely to die "from the Hep C, or from a parachuting accident when you are 80".  This guarantees that when I turn 80, if I get so lucky, I should DEFINITELY go skydiving.

All my life I've been told I "wouldn't live past *x* age" by some nimrod in a white coat pontificating about all the lifestyle changes that might ensure I live even that long.  I remember being told by a perinatologist (who was reading from a PAMPHLET I'd seen six months earlier) that I'd have to get an abortion because I'd never be able to carry the child growing inside me safely...she's 20 now---

...and isn't she just as cute a monkey as you've ever seen?
So, at some point, in self-defense against all the death predicting, I made decisions based on what was best for my children in the right now short term (she was little back then, and I knew that your early life never fades, and who I was and how available I could be mattered, so taking years out to try risky drugs was a no go).

Now there is a new drug.  It comes with a great deal of hope.  Seeing as I've carried the virus with me since 1976, an unfortunate stowaway on a prophylactic transfusion, I've really come to terms with it.  It's part of me.  That won't stop me from evicting it if that is possible, realistic, and if it won't cause me to fail to be a good mom to my son.  He still needs me.  If I have to wait, I will.  I'm sure someone will tell me I'm going to die if I wait, but maybe we've all grown past all of that...

One can only hope.

In the meantime, the real work must be done by the PA who must take her lance in hand and go jousting with the Black Heart of Aetna.  I wish her good fortune, and blessings, and would be happy to lend her my guardian angel for a while if that will help.  I certainly am no good at fighting them.

An Uncatastrophe.  Long may it reign.