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.