Thursday, October 9, 2014

Fuming

I am so angry. I'm furious.
I'm fucking tired of the world not being ready for my kid (our kids, kids who don't fit the mold, young humans in general).
I'm yelling and ready to punch someone or more appropriately slap someone upside the head so that their teeth rattle.
Teeth.

Simon went to the dentist today. A dentist that was recommended to us by another family that has a kid with 'special needs'.  The dentist that has, in his Bio (on the Medi-cal dental directory- THAT IS MOSTLY FOR KIDS WITH SPECIAL NEEDS), that kids with special needs is one of his specialties.

Simon and have been talking about it off and on for a few days to help him be prepared but not stress him out. He's holding it together and as we approach the office is already talking about giving his new dentist a hug when he meets him.

The office is filled with waiting families and there is no where to sit so I take Simon just outside the door to sit and fill out the forms. The form that includes information on why we might be seeing a dentist that works with kids with special needs.

I WRITE DOWN WHY WE HAVE CHOSEN THIS DENTIST THAT HAS IDENTIFIED HIMSELF AS SOMEONE THAT WORKS WITH KIDS WITH SPECIAL NEEDS.

(I should have left at this point seeing the patient through the window that was being held down by his mother for a teeth cleaning but hindsight is 20/20)

As we are brought in to a shared room, Simon gets himself up to the chair, which is actually more like a table, and lies mostly down (pretending to do sit ups). I get asked a few questions (WHERE I REPEAT WHAT I HAVE WRITTEN ON THE ABOVE MENTIONED FORM THAT HE HAS CLEARLY NOT READ) as Dr x  places his hands around my son's ears and pulls his head down gently.

And he is where it goes south or really let's just say to HELL.  He doesn't tell Simon what he's going to do.  Just puts his gloved fingers in Simon's mouth and begins to feel around. I start to explain to Simon that Dr x is just feeling around as my child becomes more and more agitated.  When he's done with the feeling, he reaches over and grabs one of those really fucking scary looking dental picks and goes to put it in Simon's mouth.

It's here I have enough wherewithal to stop him and ask him to show the device to Simon and tell him what it's for.

I get nothing. He barely pauses and begins to tap Simon's teeth and asks me to hold his arms tighter. I do so automatically because at this point I just want to finish and am on autopilot.

I fucking hate autopilot.

Because what happens next I'm having a hard time forgiving myself for. Before I could even realize what was happening, the tech hands the Dr the electric polisher and then places what looks like a metal torture device into Simon's mouth to keep it open. I can see that he is starting to really lose it, with fat tears coming  out of his eyes and his tongue rolled back in to his mouth. He is terrified.
I am in shock.

What is happening? There is no talking, no explaining, no visuals, nothing. We move directly from that into a fluoride treatment and before I know it, we are done. Simon is released and as he sits up he vomits all over me and reaches for me clinging for dear life. As we are given a paper towel and shown where the bathroom is to "clean him up," I hear the Dr say " you know next time we can use restraints on him." He is saying that to me.

In front of my son.

As he his moving on to the next patient.

We get into the bathroom and I go to clean Simon's shirt and shorts but before I can get two swipes in, Simon has moved into my lap, buried his face into my neck and holds on for dear life as he lets out the most heartbreaking moans and sobs.

I let him rip and at this point start feeling what has happened. The entire appointment has taken less than 10 minutes.  I think we spent at least that in the bathroom just holding each other tightly and waiting for the feeling of trauma and violation to settle.

Simon is fine and even excited to get his goodie bag of toothpaste and brush. He manages a thank you and goodbye to the dentist and office staff and we are off to get some french fries.

He's ok.

I am not. I start shaking with fury.  I'm still shaking as I type this.
On my evening dog walk I finally call and leave a message on his office voicemail.
I am not kind.
I demand a call back.
I am not kind.

When does this end? When do I stop having to hold my son down?
When does the world slow down just a little to help the small person that's scared?
When do we give some power to the ones that feel powerless?
When do we let our special little ones have some semblance of control or honor their curiosity and fear?
When do we let the child that is afraid of the dentist touch the tools, hear what's coming, practice on Mommy, do whatever they and their big person think might make this easier to do before we move in with loud and scary apparatus?
When do we stop moving at a lightening fast pace to pack in as many patients as possible because it's the denti-cal program and pays significantly less $$ than private insurance?
When do the PTSD triggers end?

What

the

FUCK?!

The video below only made the night end a little better.
It is one of my favorites.
https://www.youtube.com/watch?v=GBUehYqXkfo

Would that I could go all wild rumpus on Dr x's ass, I would.
And not in any kind of Quaker Tikkun Olam Chaplain sort of way either.



Scenes from the weekend.











Monday, September 29, 2014

The Most Amazing Sound... Maria Maria Maaaareeeeeaaaahh....Or, In This Case, Tony

This one actually starts months ago, last spring, when we went down to Santa Cruz to hang with Simon's Dunkle (donor Uncle) Mike and family.  Emily, Simon's half-sister was performing in her high school's performance of West Side Story and after a lovely brunch together we decided to see if Simon could hang through the performance. We told him there were battles so he was all excited.

To our surprise he was enraptured and sat stock still through the entire performance, talking about for days afterwards and picking up immediately on the one verse of "when you're a Jet" that I could remember (albeit incorrectly). 

TV programming was on our side and not long after the performance there was a showing of West Side Story that we recorded and have kept on our DVR since then.  Simon has his favorite parts and they've changed over the last few months. We've gone from watching the opening dance sequence over and over again, to the Jet song, the dance, America, and finally to Officer Krupke. I do admit to enjoying an especially bad parenting moment as Simon sings "My daddy beats my mommy, my mommy clobbers me, my grandpa is a commie, my grandma pushes tea, my sister wears a mustache, my brother wears a dress, goodness gracious, that's why I'm a mess."

We finally downloaded the full soundtrack so that he could learn more of the lyrics ("I like to be in America" has some very important lessons in deconstructing institutionalized racism and understanding the immigrant experience) but mostly because he just kept asking for them.  This also provided renewed interest in watching it and it became this fascinating cycle of Simon asking for a new song to listen to from the soundtrack and then wanting to go back and watch the part of the movie that corresponded.

It had been weeks and while Simon had not seen the whole movie all the way through (there's not much singing or dancing at the end) he had listened to the entire soundtrack many times and I had started to narrate the story to him. So, he knows at the end that Bernardo stabs Riff. He knows that Tony then stabs Bernardo. He knows that Chino then kills Tony. He has repeated the story back to me the same way that he has told me the story of Aladar the Iguanadon from the movie Dinosaur, or Nemo, or Mike & Sully.

Last night however, something different happened.

We were watching West Side Story, finishing the part where the Jets are telling Officer Krupke "Krup You!" and Simon asks to watch the rumble.  He's never asked this before and since we are still 20 minutes from bedtime I allow it.  Jaime has left for her evening class and Simon and I are finished with last snack, reading done for the day, and I figure why not.  I remind him that this is the part where Riff and Bernardo get killed (we are really working to understand this language as it comes out of Simon out of context sometimes) and he says 'yes'.

Like every other time we have seen scary parts of movies Simon seems mostly unfazed. Just like when Nemo's mother gets eaten by the barracuda, or the snow monster chases Anna and Kristoff down the mountain, or Toothless the dragon is in mortal danger, Simon is mostly unfazed. Sometimes he will need to move his body during those times or ask to see them over and over again, in some way telling us that these parts affect him differently than other parts of movies.
We chalked it up to the spectrum, to language processing, to the relativity of other traumatic events in his life being much scarier. Whatever it was, it was different. Simon was different when it came to what most other kids reacted and emoted about.

But last night, when we got to the scene in West Side Story when Tony is running to Maria, makes it into her arms, and is then shot in the back by Chino, Simon responded.

We were maybe 5 or 10 seconds into the scene, Tony is dying in Maria's arms and she is talking to him about there being "a place for us" as he closes his eyes and is gone.

 I look over at Simon. He is staring down into lap and no longer watching the movie.
"Simon?"
*whimper*
"Simon are you ok?"
He looks up at me with tear-filled red eyes about to spill over and just about the saddest look on his face that I have ever seen.
"Oh Simon."
 I move over to sit next to him and he buries his face in my shoulder, arms snaking up around my neck tightly.
"Oh Simon honey, is this about Tony?"

It's at this point that Simon lets loose with a loud sorrow-filled sound and cries body-wracking sobs for maybe two or three minutes, letting loose again every time I ask him if he's sad about Tony or commenting on how sad it is that Maria doesn't get to be with Tony.

This boy is so sad crying in my arms and then it hits me. This is the first time that I have seen Simon react like this.  To anything.

This is Simon's first moment of authentic empathy.

He has asked the questions before "Does she feel sad? Is he happy? Is he excited?"
He will even sometimes make statements like "She looks scared." or "He looks in love".

We have attached those statements to emotional growth in Simon that comes from where most of his developmental growth seems to come from...repetition and modeling.

If he can see Dr Gru (of the Despicable Me movies) fall in love with Lucy and then feel heartbroken when she's transferred to Australia, he can transfer those images to other people if enough of the new images are similar.  They are still attached to that movie but at least he can transfer them.  It's not unlike the new book that came out Life Animated by Ron Suskind that tells the story of how a father learned to communicate with his son (and vice versa) who has autism using Disney Movies.

We have seen this with Simon for years. He will use his love for repetition, music, tv shows, and movies to learn language and meaning. The language will often come long before the meaning but he has shown us it will come if we are patient.

But last night was different.

Simon was watching something for the first time (even though he had been told the story) and was having an empathetic reaction to it. He was feeling some very strong emotion, relating to it, and then expressing his own reaction allowing himself to feel AND be comforted by another person as he rode the wave.

After several minutes he quieted down and we started getting ready for bed. I asked him what music he wanted to listen to, maybe something happy I suggested?

Foolish Mommy. He wanted more West Side Story. He wanted to keep feeling what he was feeling. He specifically asked for "Tonight", the most romantic song detailing how much Tony and Maria were in love and couldn't wait to be together.  He did this in the midst of feeling so sad for how it all goes down. It was like he was in love with this new connection even if it was based in the sorrow of knowing how it was all going to end. I (foolishly) kept asking if he wanted to listen to more typical lullaby type songs like All About That Bass that we usually listened to while going to sleep and was promptly schooled. Nope, it's all about West Side Story right now. And even in that, it's all about the sad ones.

Almost asleep, Simon rolls over to face me. He throws his leg and arm over me, pulls me to nose to nose and says "I got you Mommy. I got you."  He holds me close for 30 seconds (which is the best 30 seconds ever) and then rolls back over.

Three minutes later I think he's asleep when he does it again.  He rolls over, the leg and the arm pinning me to him, nose to nose with a "Don't worry Mommy. I got you. I'll protect you."

I can't make this shit up.

I also can't quite believe what's happening. I don't know what it all means except that I think we've ruled out the spectrum at this point.  Some processing and a receptive language delay ok. But last night kind of rocked my world when it comes to thinking I know what to expect with my son.
It's been quite the start to the Jewish New Year.

 Mitzvah Mondays (Jaime was holding the Cupcakes we gave out)



Tooting his own Horn


Reading with Mamaw



Mitzvah Thursdays!



Celebrating a Gtube free torso!!



Yoga! 
I know it's blurry but just look at his face!  



Look what's not there?!!



Working on his Barber Training



Jack Frost with Mama


...and some bear claws


Practicing his plowing and sowing at Obsidian Farms with Wanda!



Seriously loving his new sweater from MM and PopPop


Working out the finer details of "America" from West Side Story


West Side Story

WSS 2



And one from Puss in Boots

Monday, September 8, 2014

Perspective All Over Me

Laura Here;

I've wanted to write for a while.

I've wanted to write about our amazing summer and sweet sweet times over here.

I wanted to tell you that Simon has become an amazing eater with montster bites and a true foodie palate.

 I wanted to tell you how he had such an amazing time meeting and playing with so many new people, including some kids his own age.

I wanted to share with you how opening day went at his new school and how his new teacher thinks Simon is awesome (but we think she's more awesome!).

 I wanted to take pictures of him in his new school outfits and tell you about the time that we were hanging out in the playroom of a bookstore and Simon full on asked this new girl that came if she "wanted to play Dinosaurs" with him and she did and there was a battle between herbivores and carnivores with several rounds and eventual victors.

Then I wanted to share with you about the time that we were at the foodtruck Friday event and Simon got a balloon sword and perfected the twist strike but had to recover from several injuries before the battle was over.

I wanted to tell you how amazing and frustrating it was to have typical 5/6 year old battles with him about cleaning his room up and eating what we were having for dinner versus the Otter Pop (icee) that he would just "kill nature' over if he didn't get it.

I wanted to tell you how much it means to me to run my hand down the length of my son's torso and NOT have to do a detour around a mic-key button protruding from his abdomen. AND, that boy has a little belly. No too much of one but a nice little Fitch pouche there

And then too much happened and it all feels trivial when other parents are posting about the sudden or not so sudden death of their baby or child. Aryanna, DeShaun, and Layla are gone.  I don't know what to do again. Simon has this disease. He lives with it.  I have survivors guilt and then feel it even more when I spend an entire therapy session bitching and crying over how hard it's been figuring out new strategies for him to eat breakfast/get dressed/entertain himself for 5 minutes at home without destroying something.

To be honest, I don't know how to hold it all other than to just remember I can't. I can send out love and comment on Facebook. I can even arrange for a meal to get to a family that's infirmed. I can attend a memorial service when it's local. I can make music mixes and send out cd's. I can arrange my life's work to include supporting families like mine that sometimes don't get the chance to go home for weeks at a time, living in a hospital, wondering if the're leaving with the same family they came in with.

I can buy plane tickets for a January trip to New York with only a twinge of concern about travelling in the middle of cold and flu season. I can be relatively non-chalant during the Automatic Defibulator training for Simon's teachers since right now, he's at no greater risk for sudden cardiac arrest that any other kid. I can forget for moments at a time that Simon has Dilated Cardiomyopthy with Left Ventricular Non-Compaction and still takes two very powerful heart medication 2x a day.

And then I remember. I rememeber on a cellular level because I feel so deeply connected to those parents that are posting. I wish that $$ was of no concern to me and I could fly out to each and every one of those memorial services or spend hours at the bedside of those kids listed and waiting for heart transplants. I wish that I could hold the hands of those strangers that often feel like family to me.

I wish that I were so evolved that I could transfer these feelings to dealing with my own son, who is very much alive and kicking, sometimes literally, when he is feeling his 6 year old self in opposition to my 41 year old obviously much wiser and more mature self.

Like tonight for example. Simon came home from a full day of school, his first since he started (they've had a week and a half of minimum days). This was day 1 of a change in one of his meds (a significant increase), and ABA therapy. It was not surpising to me that by 7pm we were in full meltdown mode complete with intense hitting and kicking, pulling the sheets off his bed, and throwing beloved toys and books. Red-rimmed eyes remind me that it's not just the last 4 bites of Samosa that's thrown him over the edge. It could be any one of the above mentioned issues. Being 6 is hard enough. Being 6 and having a language delay is harder. Being 6 and possibly having side effects from an increase in your heart medication and not being able to understand or communicate about it sucks even harder.

And all Mommy wants to do is finish dinner and get to the snuggling on the couch because all I can think about  are the parents that are finishing their night still swimming in the deep end of the grief ocean over the loss of their little one.  Old habits die hard though. I also wanted it to be a normal night and that means working through some of our old patterns of getting enough calories in....blah blah blah.

Let's just say that one of us does a better job being in the moment and one of us, the one well into her double digits, finally got it when the other one, deep into his tantrum, cries out "but you will still lie down with me right?"

It's that simple. We need to lie down together and hold each other no matter what. At the end of the day, meal eaten, homework completed, dessert earned, plates thrown on the floor, sheets ripped off, OR NOT, we must lie down, touch each others faces, listen to some soothing music and wait for the deep breaths to begin.

Simon got to his nice and quickly. I'm still waiting for mine to take hold.

Some pictures to show how we are blessed.



First Day of 1st Grade
 I got this down...like Michael Jackson
 Or, maybe John Travolta
 Either way, 1st grade dude!



Getting ready for Mitzvah Thursdays
 Sherrif Woody reporting for Cupcake duty




At Oakland Pride


If my mom gave me this Marine haircut, 
the least I can do is make it look kinda punk




Mitzvah Thursday II






A little then and now photo for you
Then

Now!

GG and G-Pa lovin hin up!


Tuesday, August 26, 2014

Keshet!

This weekend we went to Camp Keshet, a family camp for Jewish LGBT families that's part of Camp Tawonga.

 It. Was. Amazing.

We were supposed to go last year, but the Yosemite rim fire led to them having to cancel camp (the camp ended up being basecamp for the fire fighters).  The level of destruction all around the camp was stupendous and the camp itself was idyllic and lush.  It was really intense to feel like we were in Eden and surrounded by what is essentially a 200 mile forest graveyard.

Camp.  Camp was...mindblowingly great.  Simon was adored.  We were relaxed.  Friends were reconnected with and new ones made.  Worries about future surgeries were banished.  The food was awesome. The singing raucus.  The Shabbat service in the woods so beautiful I cried and cried. The fact that a whole camp was directed by and staffed by majority straight people was heartbreaking in the best way.  Allyship taken to a totally new level.  It felt totally radical.

Don't even quite have words, so I'll let the photos tell the story.



Simon with Charlie, the first staffer he charmed

A pre-swim snuggle

Campers!

Spent HOURS on this stage orating to whomever would listen

Getting ready to fish in the lake/pond

Learning to cast off

Ticklefest by the pond
Shabbat Services

Reading the Torah
Boy time! 
More boy time

Family time



Walking to the river

Fishin'

Family on the trail

Playing dinos with a favorite counselor

In the boat with his one true love, Lily

A little fancy dancing

Ready for action

All packed up and ready to go with his Huck Finn pack

Birthday chair dance

SOOO thrilled to see Jhos (the rabbi that married us)

Adoring fans

Wiped out with a filthy mug

A little goat petting on the way home

You know who you look like??
This is why we will send Simon to Camp Tawonga.  This.