Wednesday, December 31, 2014

The FULL extended cut of the Pensacon Commercial!!

We spent a LOT of time in this field helping with this.  It was so worth it!  It looks great, and if you wait through the whole thing you'll see Claire and Eric doing their bits, and they are listed at the end.  Y'all come to Pensacon...it's gonna be a blast!


Ch-ch-ch-changes! Or...Reverting to Normal?

So, once upon a time, we had a living room that functioned like a living room.  For a variety of reasons, it ceased to do so, and then became an OT room...once it was used primarily for OT, it stopped being remotely useful for anything else.  Yesterday, we put it all back together again.  Once I buy a couple of lamps and lap blankets, we're back in business.

When it was an OT room, it looked like this....


Now, I am pleased to say, all he really needs to do each day is a much more space-friendly amount of PT which he must do to maintain to his balance and keep his heel cords stretched out.
 

So....we now have a living room again:


And, because da Grampa and Grandma were so generous at Christmas, we have been able to move the old old old old old television into the living room and put all the ancient game systems with it, so there will be much easier times playing with the ancient historical Nintendo devices...  The even older tv that WAS in that space did not have VGA plugs.  It's in the garage now.  This is better.  Enjoying our successes, one victory at a time.  :D

Tuesday, December 30, 2014

All the Good You Find Along the Way

At the Alligator Ranch, OF COURSE they'd suggest he stick his head in its mouth!

This year was full of good.  Some of it is hiding in those posts further down the page, but most of it was just simple and quiet and persistent and existed mostly in the often invisible and unnoticed march toward helping Eric conquer his impulse control issues that still divide him from his peers and make life harder than it has to be.

We will never achieve 100% control, it's not possible, and we may have reached a plateau at this point in time, due to the onset of elongation of certain body parts and changing pitch depth and the ordinary complete loss of impulse control that comes with all of that (yay, puberty AND autism...this looks like FUN!), but that's okay.  Where we are is okay.

When he's not saying he's sorry, and looking down at his feet scared someone is going to correct him again for picking his nose, or chewing his toes, or using his whole face to eat, he's pretty happy, and that's a win.

Playing Munchkin with a vengeance
He LOVES playing games.  Munchkin, Monopoly, Risk, Chess, Donkey Kong, every single one of the Papa's Donuteria/Hot Dogaria/Pastaria, etc. games on NotDoppler, he cannot get enough of Star Wars Lego's, Star Wars books, and his love of Gilbert and Sullivan remains quite intact.  He likes penne pasta with meatballs and "jar sauce," mushroom omelettes, steamed broccoli, and would sell his sister for a good piece of tilapia, so his tastes are evolving, finally.  No more is it "fruit, meat, fries."  Now it's "cool fruit, differing meats, sometimes fries, and more and more variety in all things."  Winning!

My larger child has done amazing things...she is on course to finish her Honors' Thesis, she works as a lab teacher for the Biology department when they need her, she's an Anatomy and Physiology tutor, and a Biology tutor, employed by the school in their tutoring center, she found a boyfriend, he's nice, and she still comes home like a champ to help out as much as possible.
She works hard, she gets weird awards she isn't expecting!

Their Royal Highnesses, Claire and Bryan of Kings' Landing...'cause that's not creepy at all

She had a LOT of fun dressing up this year, making costumes with me, and working her ass off ALL the damn time so she could maintain that perfect 4.0 every semester like she mostly always does.  We'll never speak of the Art Department again, because that was just unjust and gross, and honestly, at this point that one "B" is just splitting a tiny hair off the hundredths place in her GPA.  She will yet again work at Cheley (which she has gotten rather good at, btw) and next year she will begin her two semesters of internship for her Kinesiotherapy Degree.  She still sings like angel fire, but had to finally bid a bittersweet adieu to the Music Department because, well, life moves on, and so has she.

For me?  I have pursued the cure for Hep C like a Honey Badger.  It took waiting eight months to make it even begin, and I am five months in to the whole six month course.  All I can do now is cross my fingers, hope, and wait.

Costumer Extraordinaire, Clay!
As a family, we made incredible new friends this year, some as a result of the Wizard World mess, and some we met as we traveled and played in costume at conventions.  My favorite thing I discovered this year was that comic book art is SUPER COOL, and the people who devote so much of their lives to those drawings are fascinating, driven, passionate humans and my suspicions about art turned out to be 100% true.  Whatever formal art has become (I'm looking at you, USM ART DEPT and the whole museum scene), it has in many ways lost its ability to connect with people.  I find more things to laugh at, cry at, challenge me, and entertain me on Deviant Art than I have found in a museum in twenty five years.  I LOVE the internet, and I LOVE the people I meet there and this year has taught me so very very much.  My favorite thing I own right now is that original drawing of the girl named only "Red" above, By Tess Fowler Gutierrez, a comic book artist out of Los Angeles.  You can find a much better photo of it here.  Thank you, convention goers, costumers, comic book artists, prop makers, CGI artists, pepakura creators, people who tried EVA, people who succeeded with EVA, and all the people making real, walking art and taking it on the road.  You guys rock.  And 99% are also the kindest, coolest, and most compassionate people I've met in a long, long time (I'm looking at YOU, Clay le Brun, and YOU Paul Patacek, and YOU Rafe White and especially YOU, Tess Fowler Gutierrez).

There are others, of course, but their life and support has been quiet and constant and more back-channelish and I wouldn't want to risk embarrassing them in a blog post, but LauraSplat, you and our army of friends have gotten me through some super dark days.  Roll call...if you want to be named, I do, in fact, appreciate you all, and all you have to do is PM me and I'll add you to the list.  :D

Apples and Trees
Finally, a note about my real life that few people "get."  Living with two versions of men with Asperger's (a large, engineering version who was never helped, never treated, never taught the necessary skills to really adapt socially), and a small one who is getting the benefit of ALL THE THINGS is a difficult life.  I could not do this without the help of the people who found me and I found them through this weird window on the universe called "the internet."  I'm a dreadful introvert, preferring the silence of my fortress to the chaos of face-to-face interactions, yet I find that the balance of "out at conventions" and "home to the internet" has been a valuable, life-healing journey this past two years.

Thank you all.

Toodles 2014

Could someone now follow me around and whisper "2015" every time I write a check please?  I hate having to cross out the previous year and scribble the new one across it for five months.... 

Sunday, December 28, 2014

When People Judge You and then Gossip---It's Pretty Damn Destructive


I have had Hepatitis C for nearly 40 years, with no hope of surviving it once it was clearly diagnosed as what it REALLY was in 1991 (before then, it had been a series of "well, that's weird" and "are you a heavy drinker?" "NO," and "you can't have this insurance because of your drinking problem" (WTF?) and then it was labled "non A/non B hepatitis", etc.  PS--I didn't drink, except for occasional high school experimenting and my first two semesters at college, and even then, it was no fun, so not a big attractive thing to do, so I quit doing it entirely.  Since I was properly diagnosed, I've had two glasses of champagne at each of my weddings and nothing else, because...I LIKE LIVING)...

So, since I'm delving into topics that never really made the light of day in the "old days" when I was working for the Church, I'm going to take on one that I should have done something about YEARS ago.

Gossip.

There were women where I worked did not like me and treated me like garbage.  There's no two ways around it, and anyone who knew anything at the time knew how hard one of them was working to get rid of me.  I'm sure she's really proud of herself ever since I left, but I find it super ironic that in the end, she had nothing to do with me leaving.  I left because of all the other stuff I blogged about yesterday.

She (and a few core of people who also disliked me for reasons that I will NEVER really understand) liked to gossip about me occasionally.  I know this because I would hear about it from my boss, among others.  One of the things she liked to tell people is that I was lying when I occasionally referenced there being something wrong with me that was most likely going to kill me (usually on dark days when I was feeling pretty sick, things would slip out in the quiet private of the office environment)---you know, like the Hepatitis C I have had since a blood transfusion saved my life when I was eleven years old.

I guess since I hid it so well, I should forgive her and the others involved for those wrong assumptions, but should they be automatically forgiven for the spread of poison and hatred? Nope.  You can't be forgiven until you ASK to be, so step right up, I'm really ready to move on.  What?  No?  Well, then, okay, I guess I'll let it go, stop praying for all of you, and get on with my life without your permission or blessing.

Once upon a time, I used to console myself with the thought "you better hope I'm more than you think of me, because some day, MY prayers may be the only thing standing between you and damnation."  That was super defensive, but at the time, it helped me manage my own rage at being sabotaged, talked about, and sabotaged more.

But, back to the Hepatitis C.


After nearly forty years of battling the consequences of Hep C silently, quietly, behind the scenes, fighting through the fear that my children would be left with no memory of their mother, other than end-stage Cirrhosis and Liver Cancer, and being told by doctors REPEATEDLY that I would die if I didn't do this, that, or the other thing RIGHT THIS INSTANT.... and instead deciding not to because it would mean wrecking my ability to parent (and I had no back up plan, no extended family, no husband at the time, no one to really help me so the onus was MINE and mine alone), having to choke back all of that so that I could parent my kids while they were little because that's when it REALLY matters... (think about it...if all you have left in ancient age, dementia, or Alzheimer's are your childhood memories, those are probably more important than the other ones, right?), they finally developed a cure.

That's right.  A Cure.

So, for five months now, I've worked through all the hellish fun of the toxic soup of meds that has an 88% chance of killing the virus forever.  Before, due to the specific genotype of Hep C that I have (1a), there was a mere 5% chance of killing the virus, but a 100% chance of destroying me (which is why no doctor after the first one ever really suggested the triple combo again once I decided 5% wasn't worth a year lost for my youngest children's memories), there had been nothing I could do but wait and pray.  The first doctor told me angrily that I'd be dead in five years because I was a fool and that my decision was going to result in my imminent death.  However, the transplant doc agreed with me, so I chose to wait and white knuckle it.  The real statistics, as they started to scientifically emerge, were pretty grim...30-50 years after initial infection, even if nothing major had happened to you yet, there was an increasing likelihood of an imminent prolonged, horrifying death.  At 41, I hit the thirty year mark.  By 49, at the beginning of this past year, I was nearing the 40 year mark.  Sobering thoughts indeed.

So...Gossiping bitchlets of doom...here is your shame---wear it wisely and remember to be a little more humble should our paths ever cross again, because I promise you I will NOT bend again and hide in shame that *I* did something to deserve your scorn---I was, in fact, sick, and probably well on my way to dying.  It changed the criteria upon which I made decisions.  If I seemed a little intense to you, or whatever you justified your particular dislike of me with, maybe, just maybe, it was because I knew my time was limited and I needed to DO something useful with it while I had it.

I understand now that there will always be gossip and sabotage in any work environment, I've figured that out finally, after a naive lifetime of watching it wreak havoc in people's lives.  I was just super surprised to find it in an environment I felt like ought to be immune from that sort of viciousness, seeing as we weren't really dogs fighting for scraps in a junkyard after all.  We were the servants of the servants of God.  Oh well...as one nun friend once told me "working for the church is just like working anywhere else".  Yeppers.

By the way...did you know this cure costs $178,000?  Just FYI, since I've got the bad genotype and it's six months of the meds, not the three-month course which is a bargain at $84,000.  Apparently the pills cost about 30 cents each to manufacture, and the cost is for "development" and probably the fact that it's a CURE, not a treatment and wiping out Hep C isn't good enough for investors, but, I digress.  Google it and be horrified.

So, as I near the final countdown of days to see if I'm in the 88% that are cured and not the 12% who have to try again, I start to ruminate about what the next thirty years of my life might look like.  I start to hope again.  Mostly, I reject all the inappropriate shame that I wore like a mantle for all those years.  An eleven year old child who nearly died and was given a prophylactic blood transfusion on the day she left the hospital did nothing immoral or illicit to incur a long, slow death sentence.  Whatever else I do wrong with my life, whatever other sins I commit along the way, that was NOT ONE OF THEM.

The decisions I made while under that pall were completely reasonable.  The actions I took make sense in retrospect, if you give it a bit of compassionate consideration.  For my intensity, I apologize.  For whatever you think I did to you...I do not apologize, because I know my heart and I know I did the very best I could do at all times.  I worked HARD, and I learned constantly, and whatever ill will you chose to spew about and at me is your shame.

Now, I'm going to go and rearrange the furniture in my house (it's also a metaphor for me working through the past 40 years of pretending in public), try not to barf, try not to have massive medicine-induced panic attacks, try not to pass out from anemia, and hope I get to sleep some extra tonight.  Then, for the next 29 days, I'm going to hang like a lemur from a cliff face, praying and hoping I get to live long enough to try again to make friends, make a difference, and give something back to the world I LOVE LIVING IN.  Life wasn't something I was expecting to have, so this new opportunity is fascinating, overwhelming, exciting, joyful, and hopeful (emotions I have never allowed myself, btw, because I needed to stay focused on making life better for my children). 

Prayers appreciated.  Good thoughts appreciated.  When I finally decide what to do with the rest of my life, networking and opportunity for work (volunteer and paid) help would be appreciated.  What do you get in return?  I will let you in on a secret:  you get to feel good about the universe because you brought peace and joy and happiness back into a life wrecked by a shame that should never have been mine to bear in the first place.

Toodles

Friday, December 26, 2014

What I Did Wrong in My Son's Early Years with Autism, in Excruciating Detail, So if You Prefer Buzzfeed Style Blog Posts, Don't Bother Reading This

I was a choir director.

First, I was a choir director in an Episcopal Church while I worked my two years waiting to go to Seminary per our Diocese's new Bishop's instructions to me.  Along the way in those two years, I was also at some point a choir director at the Methodist Church across the street.  Clearly, I was good at this, or all these people wouldn't have kept paying me to do it, right?  So, I learned how to conduct, I learned how to choose music, I learned more about liturgy in THREE DENOMINATIONS (because that quirky Episcopal church decided to partner up with a Lutheran Church while I was there) than anyone should know in their whole lifetime if they're not planning to be a liturgist.

I got married, my husband tried to kill me while I was pregnant, and I decided for the sake of my unborn child I would come back to my home town and make a life here again for her and me and meanwhile the D.A. only charged him with aggravated battery because, after all, it was "just a domestic squabble".  I still have the scar inside my lip where my teeth nearly cut through when he choked me into unconsciousness, so, sure...whatever...it wasn't really attempted murder.  I mean, he was a nice guy, right?

I digress.

I was a good choir director.

So, back in my home town, I went back to grad school and started over again (one of many times in my life) so I could afford to raise my child AND be at home for her when she wasn't in school.  That went about as well as you'd expect in Mississippi since I chose effing teaching as a thing to do... but, still, in the end...

I was a good teacher.

As a grad student, though, I found myself in the truly bizarre situation of having an assistantship, and teaching English 101 to two sections, rocking along, doing well, making A's, impressing people with my mad skills in what I can only refer to now as professional bullshit manufacture (English is such a stupid degree), until one fall, I decided privately to convert to Catholicism.  The call had been clear, and had lasted for ages, and had even overcome my hatred for obedience and Popes and my mistrust of the whole "Mary stuff" that seemed so ridiculously human-created, a prequel, as it were, for the Christ story, and written clearly by someone who didn't have the skills at bullshit that I did, but...I submitted to the call and delved with ALL MY HEART into what I had finally come to believe was the true, authentic Church that Jesus himself intended us to be part of.  MY.  WHOLE.  HEART.  AND. LIFE.  Guess what?  In a Baptist College, they fire you for becoming Catholic.  No shit.

I did RCIA, and cried for six months because I couldn't take communion (you can't be part of the club until you're initiated, so "suck it Episcopalian girl who came looking for authenticity of Eucharist and had been taking communion passionately HER WHOLE LIFE...you're gonna have to watch for a while without being part of this...").  I started reading the Pope's writings, trying so hard to reconcile the notion of obedience with my distrust of human beings and power and let go of my need for democratic polity in the Church and threw myself into doing whatever was needed, wherever it was needed.  Oh, and hey...I can sing and file music and I don't mind doing a LOT of that shit since nobody else seems to want to...

I was a faithful choir member...

Which led, inevitably, as these things do, because my work ethic seems to be an anomaly and people keep hiring me to do things because I actually do them (which is bizarre from my perspective...don't the people you hire USUALLY do the thing you hired them to do?!?), to me finding myself a choir director.  AGAIN.

Nine years had passed since I had had my beautiful baby girl, whose voice rang like angel fire when she sang and who didn't mind sleeping on the floors of churches and choir rooms while I did the work.  It was work that brought me there early and kept me late, and our world was filled with worship and work and I was teaching, then I wasn't, and then I had a nervous breakdown, married a loser (the likes of which you CANNOT imagine), divorced said loser, got in trouble with the Catholics for it, had to get an annulment for every single marriage I'd ever mistakenly stumbled into (those issues are the things I had to conquer around the edges of the work I did every day to make the Church I served better by my presence and not harmed by it in the least).

What has this got to do with the Autistic Child, you must SURELY be asking by now....  well, START HERE if you skimmed the whole back story part of this post:


I got annulments for all the crazy violent abusive jerks I had married out of desperation of various sorts, just like I was told to by the Church I was trying REALLY hard to trust knew what was best for me, mine, and life in general.

Then I got married.  (Don't ask, the answer won't surprise you in the end, though it looked like maybe I had done a better job this time).

We had a son.

I knew from the very beginning he wasn't okay.  The screaming.  The failure to nurse properly which took SIX MONTHS of pumping, medicine to improve supply, and teaching him to suck in order to rectify, the lack of eye contact.  The SCREAMING.  The never sleeping.  Did I mention the screaming?

He slept 2 out of every 24 hours.  No joke, no hyperbole.  2 hours only.  The rest?  He screamed, like people were poking knives into his eyes and he could see them about to do it, all day, all the time.  When he nursed, he wasn't screaming as often, but he would claw at me til he drew blood so I had to figure out how to clip his nails, which involved screaming.

Had it not been for the firstborn, happy, contented, well-adjusted child I had already raised, I'd have lost hope and committed suicide.  This new baby was impossible.  Truly, deeply impossible.  The firstborn never gave up, and worked alongside me to give him the best chance possible.  She got eye contact at 18 months, though we were being told already to never expect that, and she got it by never giving up, grabbing his face, and not letting him look away.  She was a very determined big sister, and according to her "he was going to play with her, dammit".  She got laughter at 22 months, another impossibility according to the experts.

Oh...did I quit the never-ending work of choir directing during this time?

NO.

Should I have quit?  Probably.  But remember, I was deeply devoted by now to the choir I had built from scratch and had devoted so much of my life to making the best it could be.  I hired a baby sitter for one choir, and had the firstborn take care of him during the second and put him in the nursery for the third every Wednesday and Sunday.  I still worked fifty hour weeks in the music department.  Guess how much they paid me?  $200 a month. 

Did it get better as he got older?  Nope.  Nope.  Nope.

Eventually, they kicked him out of the nursery, as soon as they could do it on a technicality, because nobody in there could handle the screaming.  Then...I had to spend thousands of dollars to provide private baby-sitting for all rehearsals and liturgies I was still expected to provide for the church, including Thanksgiving, Christmas, and Easter.  Do you have ANY IDEA how hard it is to find a baby-sitter for those holidays who will take a child who never stops screaming and is a constant danger to himself and his surroundings and even if you find one that you are pretty sure won't kill him or let him wander off, do you have ANY IDEA how much you have to pay them?  $10-$15 an hour. 

Guess how much I spent on average, in a given year, for my $200 a month hobby job I did out of devotion to an ideal, a spiritual belief that I SHOULD be doing these things, and a devotion to the children entrusted to me by their parents to teach them music and make Church meaningful?   About $3,000 a year.

I was a GOOD choir director. 

Out of my 15 choir members, we regularly placed 8 of them in State honor choir and 3-4 in National Honor Choir.  I signed us up for the International Federation Pueri Cantores and quickly we became known as the traveling choir, as we sang at festival Masses all over the country and eventually went to Rome even to sing with the BIG International Festival.

Where was the screaming, difficult child who could not sit in the Church with the 14 second reverb for more than a couple of minutes without screaming more and more and more?  With increasingly dubious sitters.

I did a good job with him when I wasn't working. 

Doing a good job with him was all I did, actually, when I wasn't doing choir stuff.  But, there was a LOT of choir stuff---fund raising, dinner theatres, Masses all the time, getting stuck with Masses the Music Director didn't want to do because they were annoying (Thanksgiving, Christmas morning some times, Easter at 8 AM, etc.).  There was State Honor choir music to learn, and National Honor Choir music to learn and there was Pueri music to learn and ALL THAT TRAVELING to deal with.

My thoughts were that I had begun this work, and it needed doing, so I would honor the comittments made to them, and that my son clearly didn't understand anyway, so he would be okay and as he got older, I'd make it up to him when he could understand.

I COULDN'T HAVE BEEN MORE WRONG ABOUT EVERYTHING.

So, here's the real point of this giant rambling post:

Two nights ago, on Christmas Eve, he came in my room late because he needed to pee.  Now that I don't work at the church anymore (eventually, if you hit a puppy in the face with a two-by-four long enough, even the very blindest puppy figures out not to keep running to you expecting to be petted), there is more time on Christmas Eve.  No more 12 hour days and sleeping through Christmas dinner at the table at my dad's like a brain dead zombie.  No more undecorated house or unwrapped presents.  No more post-Christmas hatred of being used by so many people because I signed up for it somehow while trying to be a GOOD CATHOLIC.  So, he came in my room and was about to head back to his when I stopped him and asked him if he wanted to snuggle cuddle like old times.

I asked him why he liked Christmas.  He said presents.  I was horrified.

After all I had believed, and all I had devoted my life to, this beautiful, sweet, child thought the purpose of Christmas was the three or four presents he got on Christmas morning and it finally, heart-wrenchingly, gut-kicked me once and for all.

He had never been to Christmas or Easter Mass.

He had ALWAYS been shoved to the side because his outbursts were disruptive and people didn't understand and even the year I tried I had some bitch come up to me and tell me that my choir was talking and she could hear them over the microphones and I should make them stop.  What was happening was that my oldest firstborn was trying to whisper to her little brother instructions to keep him focused and calm enough to make it through the offertory and communion anthems because my DAMN BABY SITTER had cancelled an hour before Mass that day...

He did not know the Christmas story.  I cry now, every time my mind drags across that.  It's been two days since I discovered this, and I weep at night, because that is MY FAULT.

He does not know the Easter story.

He knows what he has read in his books, and what little we told him, but mostly, he knows who he was left with while we did these things.

He bears the Church some ill will, understandably.  Maybe that's why he hated Mass so much.  Maybe it was really the noise and that damn 14 second reverb that even the sound tiles only cut down to 11 seconds.  If you have sensory processing disorder and are required to be still and quiet for an hour and a half after having been still and quiet and alone playing video games during the hour and a half of rehearsal beforehand, you're probably not going to like Mass very much.

Two nights ago, we stayed up late in the dark and I told him the story.  It's amazing how much of Luke's Gospel I have memorized.  I didn't want to break the mood by getting up and getting the Bible out of the nightstand, he wouldn't have been as close and it wouldn't have mattered as much to him that way.  I told him some of all of my journey and WHY I devoted my life to an ideal.  Why it mattered.  Why, in the end, I quit (by the way...if you wrench your head around the idea of a Pope's authority, and devote every waking minute of your life to following obediently trying to replicate his ideas about liturgy for your hometown church that doesn't give a fuck about liturgy being proper or right or in sync with the Pope's ideas and then that Pope suddenly---on your fucking birthday, no less---RETIRES, you sort of don't have a clue what to do next, especially given the fact the new Pope is the anti-old-Pope and the headspin was unacceptable to my tiny ex-Episcopalian brain).  Why I still believe in the story and why I think the story has the power to save lives, regardless of it's historicity or logical validity or lack of validity.  Why I would still be going to church if I didn't hate what it did to him so much (that part didn't escape my notice, btw...they did NOT want to put up with him, with his noises, his head banging, his outbursts, his unique brand of finishing prayers a second or two after everyone in a booming voice, his wiggling, his complaining, his occasional screaming and they weren't even a little compassionate about his lack of welcome), and how deeply, humiliatingly, horrifyingly sorry I am that I never once shared the wonder and beauty I had been seeking the in first place with him.

There is no happy ending here, folks.

There is regret only, and the power to completely change my life.  AGAIN.  What form with that take?  Beats the hell out of me, but I can guarantee you this...I will never let the CHURCH take advantage of my devotion and love of the Gospel and use me as cheap slave labor ever again.  NEVER again.  Whatever I do with my son's relationship with Jesus is between the three of us, for the next three years until he is of age to start making up his own mind. 

Criticize me all you like.  Be rude.  I don't care.  You did not walk this path, and you have NO RIGHT to be ugly.  Autism is hard, harder than most people ever get up close and personal with.  Being a musician in the Church is impossible.  Nobody's doing it because it's making them rich.  The combination was nearly lethal for me, and my son suffered along the way.

I will make it up to him.  The time has come.  I will tell the story.  I will tell MY story.  I will listen to his.  Truly, deeply listen.  I will let his sister tell him hers, how the music taught her about life and liturgy, and how the old Mass brought her to a deeper understanding of Eucharist and how the betrayal felt after Benedict XVI's retirement left us bereft and empty and outside and how much it hurt.  Then, and only then, will we decide what to do next.












THIS POST APPEARED FIRST ON  CARLEIGH's CATASTROPHES.

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."

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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.

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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.

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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.

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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!!!

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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.

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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.

Monday, May 12, 2014

My Superpower in ACTION!!!

So, we drove a fair amount this weekend...mostly to half the journey between the Firstborn and Bry-bry, da boyfriend, and so I spent half a four hour trip on my own in the car with Gilbert and Sullivan boy two days in a row.  This allowed me plenty of "alone" time to USE my amazing superpower:

"Do you hear that?"
"Hear what, Mommy?"
"The noise--- the car is making a noise?"
"No, I hear a lawn mower out in the distance though."

Turn off car, listen to world around me...no lawn mower.  Panic.

Panic more.

Call Firstborn, tell her you will have to use HER car to come back for her because you don't dare drive yours because it is making a noise that sounds like a lawn mower in the distance and it only does it when you are driving TOWARD the sun (because that's how mechanical things work, don't you know?!?)

Get in car the next morning to go to grocery (because I need to see if it does it when I'm not driving toward the sun).  No sound.  Decide the noise must have actually been da Creature's Kindle making a vibration noise in the console.  Feel relieved.  Embarrassed.  Call Firstborn and tell her I'm a stupidhead and it's all okay, so I won't have to take her car.

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Cut to end of second return trip.  Sun's out again.  We are driving toward the sun again.  The noise starts.  Even the Firstborn with the hearing impairdedness she has can sort of hear it, and it sounds JUST LIKE a lawn mower off in the distance.

Sit in driveway, listen intently to the sound.  Dread starts to form like sweat beads on a hot, still afternoon before a thunderstorm...
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After much discussion and investigation, and even recalling last year when I took it to Honda and insisted there was a noise and the mechanics told me in six different ways to Sunday they could hear NO NOISE, and how insulted I was at the time, da Firstborn and I, after listening to the outside of the car (no lawn mower) and extensive listening inside the car, make the humiliating discovery that inside the console, where there is plugged in a transformer thingie that turns a car lighter into a plug so da Creature can watch Gilbert and Sullivan while I'm driving, you know, something we only do on the last leg of a trip to keep him entertained, we hear: a sound.  We look, and I notice that the actual transformer has vents...oh, and a tiny little loud fan that sounds....

Just.  Like.  A. Lawn.  Mower.  In.  The.  Distance.

Catastrophizing is such fun...if you don't have this superpower, you should try it sometime.  Life is never as much fun as when you realize how ABSOLUTELY stupid your imagination makes you.

Laugh.  It's hilarious.  Seriously...if you don't laugh at me right now, you're dead inside and should seek immediate medical attention.

Thursday, May 8, 2014

The Summer of Our Discontent


For an expert catastrophizing middle-aged mom like myself, the end of school brings an enormous amount of anxiety as one watches the school district you are wedded to become a seething pit of uncertainty because planning for next year is simply not possible in a world of contracts and bureaucracy and funding and all the "and's" you can put in that sentence... O_O   So, I've decided that it is simply not possible to predict how horrible next year will be with any real accuracy and assuming the worst-case scenario is best for now, so I can have a horrible, illness-focused summer, and be good and insane by fall.



***screeching noise***


Wait, what did I just type?????

There has to be a better way.

When you find it, and you don't live WHERE I do, and have to deal with WHAT I do, let me know.  In the meantime, I'm going to try very hard to focus on what can be accomplished this summer and let go of what cannot, and start trying to make a few good memories in the shit pile of life while I still can.

So, in honor of a summer of worrying about things I cannot control, trying to control things I can, and absolutely no wisdom to be had on any front by any means because the world has gone nutso around us all, I'm going to spend a LOT of time staring at my garden because cucumbers grow almost fast enough to WATCH, and sit at the pool shouting variations of "NO, Eric, don't, you'll drown; NO, Eric, stop, you'll drown him/her; NO, ERIC, STOP---do NOT eat the thing you found on the ground."

We will also be exploring fishing (yes, I'm having to watch YouTube videos on how to kill, gut, and clean fish because there are no men available in my world who are willing to do that sort of thing---thanks deskjob nuclear engineer husband, for being squeamisher than I ever thought possible), building robots, writing essays on books, setting things on fire in the back yard (did I say that out loud?), and laughing uproarishly at Gilbert and Sullivan daily and in Houston at the performance of The Sorcerer.

Oh, and for good measure...so you don't forget it's me, I'll also do a LOT of this:





Monday, May 5, 2014

Birthday Parties of DOOM!

In this family, we have different sorts of birthdays... for one thing, Mama doesn't like her birthday, so it is celebrated after the fact and minimally at best, and not for the reasons you might assume.  I don't like my birthday because of lots and lots of early years that created trauma triggers for me, and are best left to the dusts of time rather than re-lived.  Kids, though, they can have birthday parties.  Really elaborate ones some years, requiring lots of hard work from the grown-ups.

Sadly, I'm not social enough (introverts, unite, just, you know, separately, et al!) to provide my poor children with adequate friend opportunities, so we have a long history of creative, fancy, fun, exciting and POORLY ATTENDED parties.  It has always created a sad alongside the happy.  There is always enough food left over to feed the starving children of Antagonia.  This year will probably be no exception to that trend, but HOPE SPRINGS ETERNAL and I will yet try again to entice folks into coming to our house and playing with our toys.  I think any boy invited to THIS party would have fun, but every year I am surprised by the lack of interest in things I think sound cool, so what do I know?  Wouldn't you think this was fun?

MALL OF DYSTOPIA DREAMS PARTY
 (The invitation reads "Boys Will be Boys Party" 
but this is what we're calling it around here)

The Mall has really gone down hill, and you are invited to come play in what's left...
(Wear swim suits and shoes and bring a change of clothes and shoes---
...it's gonna be icky up in here!!)

Food Fight Court---grab a can of cheez whiz, some whipped cream and a koolaid water gun and the obligatory pair of safety glasses and make your own fun.

Wishing Well---there's some Gold Dollar Coins in there, somewhere, and various other things, under the green slime.  Keep what you catch!

Build-a-Blank Workshop---the cardboard tower and surrounding structures are yours to paint, tape more pieces of cardboard to, whatever makes you happy.  When the party is winding down we will destroy the whole thing (as safely as possible, mind you) or, if the fire department agrees...we might set it on FIRE and hose it off with power sprayers.

Egg Shooting Gallery---if you can't use the catapult, you could always just throw them at the tree target.

Funky Off Fountain---run around in sprinkler land to freshen up, spray your friends, use the BIG water guns...clean up for food!

There will be field day type games, hot dogs, ice cream, chips, dip, cake and plenty of hand sanitizer.

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We'll see how many boys come.  I'll post as many pictures as I can get before someone slimes my camera.  :D

Wish us luck.  I really want my son to be able to cut loose and have fun and maybe make some friends along the way.

Throwback party remembering...da Firstborn's cardboard party (tea party in the replica cardboard house I made for her) was much, much, much more civilized (and yet, still very very fun):




Friday, May 2, 2014

An Entire Year of School Has Totally Passed Without my Bloginess :-o

My children...Jawa Eric and Imperial Guard Claire and the Mouse Droid of Grampaness
My last post was so bleak, so yucky, so sad, and the year has been so full of eventishness.  Some good, some bad, but nothing like the bleak awful yuck of last summer, which I am trying hard to forget.  Insights learned?  Doctors are full of crap, by and large.  Being full of crap is uncomfortable, and colonoscopies can solve that if need be.  Seriously...don't go to a spa, just schedule one of those things and you'll never ever need to be reminded that regularity rocks and anything else is just ugh.

So, in good news, da Creature has had a very good year in the schools.  He even did an amazing thing at the Spring Talent Show:


We have been to a LOT of conventions, and met a great many of our heroes, and had that work out about like you'd expect, given the averages of humanness in all persons, celebrity or otherwise.

Matt Smith, looking a bit dazed by his NOLA Wizard World experience
 There has been cosplay, costume contest drama, winning costume contests, losing at costume contests, and LOTS of new prop making skills acquired.  That Jawa up there alone caused me to get a second dressmaker dummy and a serger as presents at Christmas, and almost set our kitchen on fire doing electronics wrong the first time.  Just kidding, but seriously, don't hook everything up to the same side of the box, folks, it ends in brightly burning out LED's and dangerously hot batteries and red faces and buying more electronic components.  It's funny, but that's kind of short lived.  :D

There has been excitement in therapeutic riding, and we found out that Eric will in fact clutch a trot strap like his life depends on it, when it is clear his life could depend on it, but also...it probably would have been better to teach him emergency dismount first, before the horse had a temper tantrum while he was trying to sit on it... O_o  All's well that ends well.


As for my health...beware your aging hormones, ladies...they will bite you in the digestive tract and make your life a living hell from which no physician will look you in the eye because they are so busy telling you that you imagined the whole thing.  BOO HISS.  I had myself tested damn you (like Sheldon) and I'm not crazy, so failing to fix any of the distress while charging me thousands of dollars was kind of unfair and cruel.  In the end, I have learned to manage the more flamboyantly horrible symptoms and will at some point have my ovaries completely removed if it doesn't settle down in the next year or two.  Blechness, to be sure, but much better managed without terror of digestive cancers (thanks, GI docs who didn't treat a single symptom I needed your help with, but loaded me up with tests that were all pointless and expensive).

So, it's off to reclaim the garden this year, and plan a summer of excitement for da Creature, and be thankful of wonderful new things rising on the horizon...there is a new person following us on our travels and we will call him... the Firstborn's Boyfriend or Bry Bry, for short.  Aren't they adorable?


I will be posting again, now that I'm not sick ALL the damn time.  See 'ya round the blogosphere and out there in the convention world.  Our next outing is NOLA Time Fest 2014 and will feature a panel by the AMAZING GRANDPA on the making of Dark Smalek, our new family member, an 80% scale Dalek, with a shiny black helmet and completely RC controlled superness.  "100% of the evil, 80% of the packaging."