Friday, April 18, 2014

Reality Stick

This is the rest of our lives...
Laura and I feel like we just got whacked upside the head with the reality stick. Hard. We had our follow up appointment from the feeding therapy clinic on Wednesday and just got Simon's ABA therapy assessment report.  I haven't read the ABA assessment report yet but Laura looked wrecked by it.  She said there are some areas where is at about an 18 month old level and at the most about a four year old level. He just turned SIX.

With this report and our experience at the feeding therapy follow up we got, in a way we hadn't really gotten before, that this boy of ours is going to have an uphill battle for most of his life

Since he got the "meets autism like criteria" diagnosis a year ago, I've been saying "he's got a lot of the characteristics of autism, but they don't really think he's autistic".  That, my friends, is what denial looks like. Being on the spectrum is being on the spectrum. His brain is wired in some way neither Laura nor I understand nor can really figure out and the older he gets the harder things are getting because of it.

I'm just starting to get that it's likely that he will have to work and think harder than most of us to do basic stuff like eat and communicate and pay attention... for the rest of his life. He's not going to "grow out of it", it's not just things being a little off from the trauma he experienced as a baby, he's not just quirky.  Our kid's brain is a total mystery and the older he gets, the harder and harder time he has meshing with the world.  It's brutal and painful and exhausting to watch and to parent.  He may always need our help. Not "Mom can you float my car insurance payment for a month" help. Big help.

On Wednesday, the whole feeding team observed us doing a meal with him.  It went as it typically does with some eating, a lot of coaching, and a lot of fighting. They universally said we're doing everything exactly right. Laura cried at this proclamation, and not out of gratitude.  Doing everything exactly right and still having everything be such a battle makes this whole thing feel Sisyphean. There is no magic trick, no one thing we should try, no real lynch pin that we can pull.

The psychologist was amazing.  She totally affirmed Laura for the magnificent work she's been doing.  She's doing everything you could ever hope a parent to do for their child.  And our child is not like most children. She explained that because Simon is on the spectrum, there are ways that his brain can't really take in and process things like other kids.  It's clear we've been giving 200% she said, AND  giving 300% is not going to get different results.

She talked at length about kids on the autism spectrum often completely lacking "internal motivation" to do things.  Internal motivation is doing something because you get a good feeling from falling in line with a group or knowing that you'll feel proud after accomplishing something hard.   Unlike most kids, Simon isn't motivated to do things because other people are doing them or because he will feel satisfied or accomplished when he does something. He needs CONSTANT external motivation (praise, stickers, 5 seconds of video) to get through most things in his life he is not inherently interested in.   Doing floor puzzles?  No problem.   Watching videos of Olympic BMX riders?  Bring it anytime.  Listening to/reciting Green Eggs and Ham?  15 times a day please.  His brain hangs onto those things obsessively.

However, anything that's not really in that obsesso category is...well...really hard. Hard for him to do and hard for us to get him to do. In the last 6 months he's gotten more and more furious about everything he "has" to do that he doesn't want to do. Soooooo pretty much any transition, putting on clothes, taking off clothes, brushing teeth, eating, being in a group setting, walking out the door, walking in the door, getting in the car, getting out of the car. He flies into a rage telling us he will destroy us, we will go to jail, that he will never ever do it, hitting, kicking, knocking everything off a table.  All. Day. Long. We never quite know what will set him off or interrupt the tantrum and they're increasing. His brain has a whole set of rules and language and customs that we don't understand. When he gets triggered and I have no idea why,  I feel like a foreigner totally confused by a native's hostile reaction to an etiquette violation I completely missed. It's awful on my side and I can't imagine how isolating that must feel for him.

If he has a "bad" meal and doesn't get a reward or has to go have quiet time, it's devastating to watch.  He will lie on the couch and cry pitifully and say he is so sad.  If you ask him why he's said, he will say "because I had a bad dinner".  He gets it AFTER the meal is over.  Even though you coached him 25 times during the meal about the rewards he will get if he finished (and offer 92 million incentives during the meal), there is a way his brain just can't process that information or hold onto it long enough to get him through a meal or override whatever it is in his brain that is telling him to fight. So many meals have ended with this kind of "failure".  It's so so sad, for everyone.

At the end of our session, the psychologist gently laid out the option for us to dial things back a little.  She suggested using the g-tube again to do some high calorie formula at  night and/or at school and ease up on the pressure at the table.  He's actually right on target for his weight gain which means Laura has done a spectacular job making sure he gets enough calories. It's just that it's practically killing her to do it.  So, we get to work in a little space for them to catch their breath until ABA therapy starts and we get some systems in place to help motivate him to do all the things he struggles with, including eating.

So.  That's where we are.  Still sort of holding on by fingernails and trying to catch our breath and not push so hard.  And grieving the reality of what our future realistically looks like...still uncharted but likely pretty rocky with no smooth waters in sight.


Tomorrow is our family Passover Seder.  I hope for liberation from the bondage that has kept us close to the edge for the last 4 months and have a fervent hope that we can find  more peace and joy in the coming months.  Dayenu.

Oh yeah!  On this trip we also got to visit with my Aunt and Uncle and take Simon to Disneyland for the first time! Once he got acclimated, he had a great time.  See for yourself...
He is so NOT feeling Disneyland yet

Is there a Princess in there?
We blasted Zurg on the Buzz Lightyear ride FOUR times
We survived Buzz Lightyear ride! (with my Dad and uncle)

Most maniacal driver you ever saw.  Look at his face!

16 is so terrifyingly close...

Do we even need a caption?

A metaphor for Laura's life right now :-S

Exhausted and happy Mommies

Every kid needs a light up light saber for a night time jaunt!

About 5 minutes after getting in the car to go home

We did it!!

First 3-D experience on the Star Wars ride.  He LOVED it. 

Mama is not quite strong enough
Boys and their Churros. 

Wednesday, April 9, 2014

Addendum to SIX!

Every time I think about Simon turning 6, I feel a pang of sadness deep in my heart.  It surprises me each time. It's a very strange experience to feel sad about a living child's birthday. I've been wrestling with this for a few weeks now and think I've identified what the sadness is about.

When Simon was critically ill in the hospital and we were faced with the very real possibility that he might die, I couldn't help telescope out our lives over the coming 5, 10, 15, 20 years.  I thought about how painful each holiday, celebration and especially, birthday would be if he died. I spent real time wondering how many years would have to pass before those events were filled with mere sadness instead of anguish. Every birthday is a reminder of that time when I was mentally erasing Simon from my future as I stared into his tiny face.

His birthday "should" be a time of joy, but I have found that for parents like us, joy and sadness slip into places you least expect them.

So be it.

Every year that passes also marks a year closer to puberty.  Most parents have a sort of comical dread of puberty- of attitudes and pimples and awkward conversations.  Our dread of puberty is borne of PTSD, of never EVER wanting to back to where we were when Simon first got sick.  Stories about kids who were stable for years and then decompensated again when puberty hit are not uncommon on our Cardiomyopathy listserv.  There is something about the hormone soup and accelerated growth that upsets cardiac stability. Stability we have fought  for until we were half-dead ourselves...

I've been trying to enjoy this "coasting" period we have had for the last few years (at least in terms of heart disease). The idea of Simon getting that sick again and going back to that life of constant terror and disruption is almost too much to face.  It feels like sooner and sooner I'll need to get back up on my perch to scan the horizon for signs of trouble.

Soooooo Simon turning  six feels...surprisingly complicated.

And it's amazing.


Off to have a celebratory dinner with our surly, amazing, thriving, feisty six year old superhero.

Spiderman/crossing guard at attention

Monday, April 7, 2014


This was the first time in six years that Simon ever expressed any interest in his birthday. He asked for two specific things (several thousand times) over the last month. "Is Elsa coming to my house?" and "We can have my party at Gymboree?"
So....he got both! He nearly fainted when you-know-who came to the door on Saturday and ran himself into an ecstatic puddle on Sunday.  
Take a look.
OMG! Look who's in my bedroom for my Birthday Party!!

I'm thinking..."How Cool Is This?!!"


Thank you for the Balloon Sword. Do you want to marry me?!

This is just unreal!

Simon's Mexican Wrestling cape will be put to good use


Jedi Knights sparring

Elsa is too cool!

 This is just the best birthday ever!!

Thank you Mama and Mommy! 

And I get a Princess Dress?! 

Marble Mania with Mamaw!!

Day 2 Birthday Part II

Storm Trooper ready to go!

 High flying super heroes!

Working on our Olympic Skeleton riding

 Dude! This is totally awesome!

Bubbles make everything better

Please note the larger kid on the left

Simon and Citlali reunited!

Good Peeps. Good Times.

This was Simon at the end of a long day, just running for Joy!

A moment of repose...

 ...and we're off again!

Happy Boy!

Tired Boy

He turns 6 on Wednesday. I'm having a hard time believing it.