A Peek

You might think this is a post about someone getting a peek into the autism parts of my life or my children's. But it's not really.
Today I got a glimpse into how other people view MY life. The happenings with Son#2 and how they would react differently than me. How this journey the past three years has changed me.


I went to see Carson today with a foreboding feeling in my stomach, really nervous about what I'd find. I knew his new therapist had left & he had a new guy and that was a lot of change. Throw in the wintry weather we've had lately which would keep him indoors more than out, and it probably didn't make for a happy Carson.







Because I was nervous, I asked a friend to go with me at the last minute.
She gladly accepted & had always been curious about the situation but never seen Son#2 at his "camp".

As soon as we saw Carson he was happy to see me & even smiled at me. I did find out that he'd been in quite a few holds recently & some lasted 25 minutes. I was stunned. I can't remember the last time the holds were that long. I even ask the therapist if that was legal--which he assured me it was.
He warned me Carson's arms would look pretty bad again.
Apparently, potty training has been ramped up & once again not surprisingly, Son#2 is not happy about it.
A lot of his aggression right now is stemming from the forcing of the potty training rituals. To the point he is even waiting until he has therapy with this new guy---and pees in his chair in the office!!
The poor therapist---he looks at me & says, "This may sound crazy but I think he's doing it on purpose."
I threw my head back & laughed and told him I was pretty darn sure it was on purpose too.
He is throwing fits when taken to the restroom  & made to sit. And one evening he even fell asleep they made him sit there so long.
I took all this in. Made my notes. Offered some comments here & there.
Then my friend decided she couldn't hold her concerned comments back anymore.

In a pause in the flow of conversation she says, "Okay are we going to talk about the elephant in the room here?! How about we realize he is scared, doesn't enjoy this or whatever & it causes him to harm himself & be in holds---so you STOP trying to make him potty train?? Then everyone is happy? Is anyone else seeing this?!"
Everything she said was what any normal, sane person or parent is thinking. But I'd been down this road before & knew the cycle. I hadn't planned on fighting this. I knew there was no point. But she reminded me how others must see all this. I was so proud of her, speaking up for MY child, and just trying to help in any way she could. What mommy heart wouldn't want to step up & help?
I felt such love & gratitude that my friend---my friend I chose to bring as an ally in this small summit of today in this huge war I'm fighting, stood up & said no. She said hell no, this isn't right--how can it be? Why aren't you doing something--and she didn't sit blindly in the corner unaffected. Her heart was moved & she said so.
**I have to tell you--my friend radar is stellar. I've fine tuned it & it's at it's peak right now. Just when God knew I'd need them the most--my arsenal is full & at the ready in the friend/support department.**

To answer her the therapist explains about the recent DHS & DDSD audits Rose Rock has undergone--ahem--and how there have been some changes implemented. And one of those is Carson needs to be working actively on his goals to stay where he is & "meet criteria". Well, just for as long as we want the Oklahoma Health Care Authority to pay for his stay. It's an angry cycle I don't condone & at the same time, I understand having played this game before with them. It's like an angry Plinko board where I get to throw down a chip & pray to the game show gods that it lands in a big money slot.

I told the therapist some stories about Son#2--to prove his Thinking Reasoning skills are above his IQ number. I believe he was impressed.  I let him know, while I realize that Carson's diagnosis has an imposed limitation, it is not something I agree with entirely. I see it more as a ladder that there are some rungs missing in spots. Maybe you have three together & it's missing the next two and then goes on for a ways all intact.
To the average person or parent I'm sure that seems rather perplexing. If a baby sits up, his next stage is to crawl, pull up to something, and then walk--right? You don't often see a child do these steps with big gaps. (I stress often because my children didn't crawl--they just pulled up & walked off.)
Carson can do some things an average kid his age or IQ could do. But don't be surprised if he doesn't know not to touch the stove just because it's red. We have gaps. Missing rungs on our ladder.
Potty training is a big ol' gap. It doesn't please me. But by all that is holy, it is certainly NOT within me to MAKE a child do something that causes them so much distress they bite huge chunks out of their own flesh continually!

I let the therapist know I understood his position (like a waitress who didn't cook the food) & I hoped they could please find a way to temper the potty training escalations. He had another theory that Carson may be imitating behavior he's seeing from other boys on his unit. Apparently there's another kid who bites his own arms. It's a possibility I will entertain & definitely bring up to the judge in my motion to get him moved from Rose Rock quickly.
Coming back to the "peek" theme of this post,  I found in talking to my friend as we left---and another parent who has a child similar to Carson later today (yet doesn't have any aggressive behaviors)--was my behavior slightly baffles them.
***These are MY words to explain their reactions to the situation today.***
I think it's hard for them to understand my calm nature when encountering todays drama. They both checked in with me several times to make sure I was okay after seeing Carson's arms.
I got the impression my non-reaction was giving them cause to worry about me.
How would I react? Be upset? Cry? Flip a table?  How was I holding it all together? "You're sure you're okay?"

I told them both, that the glory of that miracle belongs to God. I won't pretend to know how I don't scream, or throw a right hook to people's throats on a regular basis. I would love the secret so I could pass it on to others & selfishly use it other areas of my life where I might be known to throw a hissy fit. Or two.
All I can say is I made peace with my son's journey a few years ago when it all began. I had to, to survive it. My ship was sinking fast the moment he went away.
Dramatic as that all sounds, it is the basic fact of the whole enchilada.
I knew going in this was big. It got bigger as we went & it gets bigger as we continue still.
I am continually amazed at how much bigger this continues to get & how much deeper my faith extends. I prayed. God answers. He continues to do so. I am thankful.

That being said, there is the "in the moment", practical side of things. I AM human.
I am a mom. This is my child. And I am a girl. How do I not break down in tears today when he grabs my arm, and in his non-verbal way, begs me not to leave???
I am the girl who's dad would try to distract from seeing a dead dog on the side of the road or I'd cry.

What I told my friends today was this--I can't do as much for Carson anymore. But what I can do is work my ass off for him. And to make the most headway, the biggest impact & most progress I can for him---I have GOT to keep my wits about me. I am a people watcher & I have watched parents spin out---use their energy too quickly. It left them in the ditch on the side of the racetrack. Yeah I'm not doing that. I'm in this to win it.
I will pace myself, I will find a rhythm that works with each situation, each person in control of some aspect of my son's life and I WILL work them. And to do that, to play that game, to be thinking two steps ahead, to be aware of all their angles, games & manipulations, I have to keep it together. I detach. I step away probably in much the same way a doctor does with a patient writhing in pain. It helps no one when he is flustered and caught up in the emotion of the moment.

Don't get me wrong--this does not mean you won't find me baby talking him & kissing his neck-- crying on the way home from seeing him or having  a "woe is me" days. Oh I have them. I recognize them, I acknowledge them & I move on.
HA!  I absolutely do not do that all the time!!  85% of the time I do not move on until days, maybe a week later.
I'm not a robot. I sit down with my Mega Stuff Oreos and I phone a friend. I scream, cuss, cry and complain. I wallow. I empty my heart. On really bad days or weeks, I close it all down & isolate in my shell from the rest of the world---friends included. Self-preservation is the name of the game.
But eventually, I remember that I can have those days/vacations from the work I'm doing--I just can't unpack & live there. That arsenal of friends is learning to let me feel what I feel, when I need to & ride that wave. Another reason I like them.
There's your peek.