Tuesday, April 22, 2014

Serenity

In my typical loudmouth/external processing fashion, I've been talking a lot about the new information we got last week (the way spectrum stuff is impacting eating and the ABA assessment results) .

I've noticed that almost universally, people (close people and acquaintances)  are struggling with this new information in a way I have not seen thus far in our journey. There seem to be a lot of feelings, in particular, about the developmental ages assigned to Simon in the ABA assessment.

It's fascinating and maddening.

When I explain that, for example,  his receptive language was scored at a 1 year 1 month old level and interpersonal relationship skills at a 1 year 8 month old level, the responses have usually been:

"Do you really agree with the results?"
"He doesn't seem that off."
"That sounds like a very rough assessment."
"I wonder how typical kids would score on that"
"I always ignore reports like that. They're just labels and don't mean anything"

It's hard to get responses like this for two reasons. 

1) This report was super helpful for me b/c it quantified and made more real our lived experience. The numbers were shocking on some level but also explain to people who don't live in our house what exactly we're grappling with every day. It really does feel like we're living with a toddler trapped in a 6 year old body a lot of the time.  Now I know we're not crazy.  And, other people aren't crazy for having a hard time swallowing this information.

As the psychologist at the feeding therapy program explained, it's hard to really understand his delays/potholes sometimes b/c his skill levels are scattered all over the place. In some ways he's at or above what you'd expect for his age. Casual observers, or even Laura and I sometimes forget or don't realize that there are real gaps in his abilities and the "failures" or pushback are not a function of him just trying to be a pain in the ass. Having a realistic picture about where his abilities are right now is actually helpful for me - it means I need to adjust my expectations such that I don't get as frustrated or angry about him "not getting" something he seems like he should. We just really, really need the tools to help with the work-arounds- to build the bridges from point A to point B that he can't do on his own right now. The labels and numbers don't change who he is but they change how I understand how he is interfacing with the world right now.
 
2) I'm forever grateful for "superheros" like Temple Grandin and para-athletes and other folks with disabilities who do amazing things, but I'm starting to feel the pressure as a parent of a kid with special needs to hold that out as my goal for him.  To reject labels and dream big and not let anything hold us back from him "reaching his full potential", whatever the hell that is for a 6-year old. 

This is not good for  recovering type-A personalities like me.  Type A's are status-conscious, hyperactive, hate ambivalence and are driven to take on more than they can handle.  I have spent the last 10 years, and particularly the last 6, trying to un-learn this pattern.  The unspoken suggestion I keep hearing is that I should push past everyone and everything "in our way" to get him to some pedestal, to some finish line, to some fantasy end point that "defies labels and expectations".  Maybe it's just my Type-A filter that's reading the responses that way, but it's what is coming through. It's making me a little mental.
  
The Serenity Prayer is what got me through my 20's.  It goes a little something like this: 

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.

I've always had the courage to try to change things.  Action has never been my issue.  I'm the biggest do-er you're likely to meet.  It's great and useful and very rewarded in our society,  but it has it's limits.  Especially when you bump up against something you cannot change.  Like, oh, I don't know...your kid having Cardiomyopathy or his brain being wired differently than typical brains or any other number of life-altering, mind-numbingly hard things.  

I'm getting much better at finding the wisdom to know the difference between the things I can and cannot change but the biggest challenge in my adult life has been to make peace with the things I cannot change.  

Ironically, getting a report that says, "oh your kid is acting/thinking/speaking 5 years younger than your brain thinks he should" is helping me make peace with what we're in right now.  We've been busting our asses for the last nine months to make a square peg fit into a round hole because we didn't have an accurate picture of where Simon REALLY is. It's no one's fault. The way his skills are scattered,  it makes the average human think that if they just tried a little harder, if he just paid closer attention, if we just found the right incentive, he could do all the things we and the world are asking him to do. 

Something about the report and the conversation with the psychologist at the feeding therapy clinic made it possible for me to just stop fighting so hard right now and...wait. He can't get directly from point A to point B right now and we don't have the skills to teach him how to walk around the side yet. Denying what the report said or quibbling about a year here or a year there doesn't change the fundamental fact that there are BIG potholes.  He can learn to get around them, but we're not there yet.  We're here.
 
My goal is to stop pushing so hard.  It's to just sit and be still and enjoy the little snippets of sweetness that are there to be found between the hourly tantrums until help gets here. It's to sit with the sadness and frustration and despair and hope because they're here. 

This shit is hard, y'all.  It's hard for us and I know it's hard for the people who love us.  Thank you for all the ways you support, love, think about, pray for and help us.  I appreciate all of it, even when it's not exactly right.  :-)

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.

*sigh*

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.

Both/and.

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

Six!!

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?!!"


Magic!



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


Darth!


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.