Friday, December 5, 2014

Mind The Gap

I cannot begin to tell you why this image that comes to mind, but what happened last night felt like getting slapped across the face with a big, smelly, slimy fish.  Not violent but unpleasant and jarring.

After Hebrew school, Simon and 2 other 6-year old boys he’s been in class with for a few years like to run around the sanctuary.  I played with them for a while and then left them on their own while I chatted with other parents just outside the doorway.  About 20 minutes later, I looked in and realized it was quiet and I didn’t see any of the boys. 
I called out for Simon. Just then the Mom of one of the boys headed towards me up the aisle saying, “He’s in there.  Something happened. Let me go find my kid and then I’ll tell you what’s up”.  As I walked in, I heard a pitiful wail.  When I got to Simon, he was sitting on a bench, totally curled over his knees, head in hands, crying. 

I sat next to him and put my arm around him.  He slumped against me and continued crying.  After a few unsuccessful attempts to get him to tell me what happened, he said suddenly wailed, “I died! They killed me!”
He has been running a few verbal “tapes” for the last few months when he’s upset- that he died, that he is going to kill you, that you are going to go to jail, that you or he is going to the Dark Side (Star Wars reference).   We’ve tried talking to him about it (especially the died/killing ones) and it’s clear he does NOT get what it really means and why it lands so hard on other people when he says it.  We have been instructed by our ABA therapist to do “extinction” with it, which means to just to ignore the behavior until it goes extinct or dies.  I know, ironic. 

Last week when we were driving through downtown Oakland to assess the aftermath of the Ferguson-related protests, Laura started to explain what we were looking at and why.   He seemed to sort of get it and sort of not.  After we explained the basics, he asked a few questions (Questions!?!?!- Monumental progress developmentally).
Him: The police officer shot someone?
Us: Yes.
Him: Did he die?
Us: Yes.
Him: Did the police officer go to jail?

Us: No.  That’s why people are so upset.  People don’t think it’s fair that he didn’t go to jail for shooting someone that didn’t have a gun.  

Then he said some sort of “popcorn” speech that let us know we had reached the limit of his ability to engage on this.
Since that conversation about Ferguson, we’ve both noticed that his "I died/you will be dead/you will go to jail” tape has increased.  It’s been a little disturbing and makes me worry that we did the wrong thing by trying to explain such a painful and complicated issue when it may be beyond his ability to process.  But he is a sponge and I know he has been hearing us talk about it ad nauseaum at home, so all the information is already in there.  I think our job as parents is to help him make sense of what is going on in the world around him, however we can, even if we miss the mark once in a while.

It’s clear that while he gets the intent behind those words (mean/bad things), he does not get the level of intensity.  Still, when he said, “I died.  They killed me”, I felt a punch to the gut and my eyes started to sting.  I had lightening quick flash of thoughts that included maternal anguish at the idea of that ever happening to him quickly followed by my social justice brain stating that white privilege would make that highly unlikely.  It kinda left me with whiplash.  And I still had a sobbing child on my arm and no idea what in the actual hell had happened.
The other two boys and their mothers came in and stood in front of us.  One Mom asked the group of boys what happened.  One of the other boys started to tell his version.  The other Mom said, “I think Simon should tell us what happened since he looks really upset”. 

Laura and I shot each other a look.  We both knew that there was absolutely ZERO chance Simon would be able to give a coherent or accurate accounting of much that would be useful, given his speech challenges.  Still, I decided to go along with the charade and asked Simon if he could tell me what happened.  “I killed them!” he exclaimed.  I couldn’t even look at the mothers. I didn’t want to see the shocked expressions on their faces.  “I sent them to the Dark Side”, he continued.
Laura said that she would like to hear from the other boys about what they thought happened.  One of them, the more rambunctious of the two, started animatedly telling a story of all the things Simon said to them (none of which were phrases or words Simon uses).  Then, he explained, Simon’s shoes came off and that’s when he got upset.  An adult asked how the shoes came off.  “Oh, it was an accident”, he said and spun a tall tale about a jacket mysteriously getting tangled up in the shoes.  Then the quieter boy said, “He said he was going to shoot us and that we were going to die and go to jail and go to the Dark Side.  We didn’t want to”.

Laura and I started vigorously nodding.  Now we were getting somewhere. Yes, we said, that sounds like something Simon would say.  We did a quick reminder with Simon about not saying those kinds of things to people because it hurts their feelings.  Head still buried in my chest. What happened BEFORE he said those things, we wanted to know.  No one could really tell us. 
I had an idea.  “Simon, did you want to play Star Wars with the boys?” I asked him.  His tearstained face popped up, smiling. “Yes! Let’s play Star Wars!” he happily chirped. “We don’t want to”, the boys replied.  Simon’s head dropped back onto my arm and he started sniffling again.  “I want an apology”, one of the boy proclaimed.  I asked Simon if he could apologize.  “NEVER! They will be dead! They will go to the Dark Side” he replied. 


These boys have been in class with Simon long enough to know he’s quirky and doesn’t usually like to go with the program, but this incident revealed exactly how big and where the gap is between him and his peers. I felt like some flap of skin had been peeled back and they were staring at our tender spots, pulsing and shiny and vulnerable.   It felt…humiliating and a little scary and sad.   We’re both really questioning if it’s okay to leave him on his own with other kids because he can’t read social cues and can never articulate his side of the story if something goes wrong as a result of a mis-read.  This is so not the free-range parenting I had anticipated.
As the 2 boys scampered off to play,  Mom of the rambunctious boy started to apologize and then started to tear up.  I moved in to give her a hug and she fell on me, wracked with sobs.   “I feel so bad about the lie” she moaned.

I wanted to draw back and shake her and say, “It is the most amazing thing in the world that your son just lied!  It’s probably the most age appropriate, typical thing you could ever ask a 6 year old to do! Do you know how fucking lucky you are?”
I also really felt her pain as a mother whose kid had just done something kind of shitty.  I murmured that what he did was totally age appropriate (true),  that she was doing a great job (true) and that I was that kid that took other people’s shoes (totally true- I was an angry, kinda mean kid) and wasn’t parenting just fucking brutal sometimes (a-to-the-freaking-men)?  She wiped her face, flashed a sad smile and nodded.

Last night was a reminder that, despite all our progress, there are still pockets of gaping, swirling, unbridgeable (for now) chasms between our boy and his peers.  Last night was the first time that one of those gaps has caused an incident.   I have a feeling it won’t be the last.

Tuesday, December 2, 2014

A Year

A year.

Today marks a full year of Simon getting 100% of his nutrients by mouth.

It's an incredible accomplishment and Laura and I feel...awful.

We've both been struggling with sleep issues and depression for at least the last 6 months and have been somewhat baffled because life finally feels sort of easy for once.    It wasn't until Laura reminded me that we're at the anniversary of this huge milestone that I realized why we are both struggling.

We are on EMPTY.

The absolutely absurd amount of tears, grit, sweat, patience, faith and love that it took for us to get Simon off that feeding tube is indescribable.  I'm not exaggerating when I say that September to April of last year was harder than when Simon got sick and was in the ICU.

Yes, it was that bad.

When Simon was in the hospital as a baby, horrible things were happening, but in some ways we got to sort of "check out" of a lot of responsibilities.  We had lots of folks around us supporting us, we had space and time to have feelings, had a singular goal of just showing up for Simon and for each other and waiting to see what was going to happen.   We just had to turn it all over to the Universe. There was nothing to DO.

This last year?  This last year was not that. This last year was GO GO GO move move move JUST KEEP GOING we have goals to meet and projects to finish and we can't stop even for a second or we might lose ground.

It all started last September when we began construction on our house to build a bedroom for Simon so that we could finally get some uninterrupted sleep (still hasn't happened, by the way).  We planned to be in the house while it was happening since it was all going to be on one side of the house, and thought we'd only need to be out for 3 weeks of the major construction and it would be done in 10-12 weeks. We'd be in by maybe Thanksgiving even!

That, as you may recall, was a hilarious fantasy. It was an actual construction project and BY LAW they all take longer and cost more than planned. So...mid-November became mid-January and the 3 weeks of displacement became 6.

That would have been fine, except Simon also started a new school, in an integrated classroom with *28* other children.  Between the overwhelming amount of children, rigid demands of a non-special day class and the chaos at home, he completely flamed out. He started hitting kids and just generally shutting down, to a degree that sort of freaked me out.

That would have been enough, but then a space opened up for the inpatient feeding therapy we'd been on a waiting list for for a year so Laura and Simon left the noisy, dusty chaos of our house and ditched his last few weeks of school that he already hated, to go live in a hospital on the other side of the state.  Not for a vacation.  To be part of the hardest thing I have ever witnessed anyone do. Just go read the posts that start December 2, 2013.  They're...well, I won't even go back to read them.  It's too fresh.

Then, YEA!  We finished the program!

And came home to absolute chaos as our house was still not finished. And had to implement at home what had taken an entire team of 10 people to accomplish in the hospital. And it was make or break because if we couldn't get this to stick, Laura and Simon might have to go back to the hospital and do the whole goddamn thing over again which would have brought us both to the brink of something drastic.  And every. single. bite. and. sip. was. work.  Every one.  Six times a day.  Day in and day out. It was torture for everyone.

Two weeks after we got back, Simon started at a new school and we had to let go of the eating reins we had been gripping white knuckled for weeks. He had a very sweet but VERY young and very new teacher at a really challenged school.  A school that ended up in the news a few times for some serious shit that was going down at said school.  So we had to start the process of looking for a new school for the next year, while we crossed our fingers that nothing bad happened while he was still at the old one.

It was, as my friend Abby says, "A Puppet Show" (It's short for "That's some awful puppetshow bullshit", a reference to the period when Simon's favorite three words were "awful" "puppetshow" and bullshit").  I felt stripped completely down to the studs more times in that chunk than I did when Simon was in the hospital, in an "I'm totally at my limit and I don't know what comes next but I can't keep going" sort of way.  It was gruesome.  We got through it but we have battle scars.

If I look at our lives now, I can see what a gorgeous house we have and that Simon requires one tenth of the work he did a year ago to eat and that he's thriving and reading and making friends.  I can see that our lives are really quite splendid. Some part of me is grateful but most of me (and I think Laura too) is battered and empty and spent.

Laura had the great analogy of busting ass to get through finals and getting it all done and having a little window of relief and then getting sick from the stress. We're still in the sick part.  It makes no logical sense and isn't where we want to be, but we are both in the weeds. This too will pass, but man, it sucks not to be able to fully celebrate a victory like this.  And life goes on and we will heal because we are, if nothing else, a resilient pack of whackos in this house.

That boy loves his Mommy!

Celebrating the last GI appointment with a hot dog!

Hangin with his sister Emily

Related much?

Oh, what spell will I use at Hogwarts today?

Mugging for picture day

Getting a lift from Dunkle Mike!


Even Storm Troopers need carseats sometimes

Carnitorous killing a cheeseburger

Safety first!