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. 


Anonymous said...

I've been reading since I saw you guys on Momastery, and I just wanted to send a virtual cross-country hug and say hang in there, mamas. Y'all are incredible. Praying for you guys to all have more peace and joy in the coming months!

Nate's Mom @ Nate is Great said...

All righty, showkids - here's the deal. The first ABA report? It sucks. Big time. Because it's a stark comparison of where your child is currently performing against those horrific, concrete milestone charts. And as first time parents, we have no clue when our kid missed a milestone because we haven't been on this path before -- and we have no clue that it shouldn't be this hard because we've never done it before. So read the report, take it in, and then find hope. The report? It's the bottom. The ABA therapy? It will help you rise up and out. And you will see the growth -- literally in charts and data; in the growth of your skills to raise your awesome son; and in the growth of your son's abilities and talents and his newfound ways to take on the world. And if the data doesn't show growth, then it allows for course correction to find the right way to help your son be the best kid he can be.

There's an adult blogger online who is on the spectrum and she posted something so profound the other day about parents of kids on the spectrum -- they often fail to realize that their child will grow, evolve, change -- that though autism is part of our children, they, too, go through phases and stretch, fail, try again, and grow.

Nate's turning five next month and I still can't look at milestone charts. They are incredibly depressing and frustrating in that they don't measure my child's talents or strengths. It's a cookie cutter checkbox chart that he's supposed to fit himself into to find "success." But, as much as I hate that chart, I love it -- because it was what helped us catch autism at 15 months (though not diagnosed until 18 months when Nate started walking).

Nate's been in ABA therapy since 18 months and he's now in it for 30+ hours a week. The changes are beyond words amazing. So chin up, mamas. This is the bottom. No where to go but up up up. xxoo