Wednesday, October 12, 2011

Sick of therapy (reminder for bad days)

Wrote this a couple weeks ago, wasn't gonna post it. It brought some needed changes ( and I thought, huh, maybe that was it's (only) purpose), but today I realized there's always gonna be the "off" days, where these type feeling come and then things get better. So I'm posting this to remind myself on "those" days, that they won't last forever, nor will they ever stop coming around every now and again:

I've been struggling with Aaron's therapy lately.

To the point where I have even entertained the thought of quitting.

This morning I read in Lectures of Faith.

If men were duly to consider themselves, and turn their thoughts and reflections to the operations of their own minds, they would readily discover that it is faith, and faith only, which is the moving cause of all action in them; that without it ...all their exertions would cease, both physical and mental.

My first thought?

Am I loosing faith in Aaron?

My gut fell, pulling my heart down with it as I reluctantly realized and shamefully admitted the answer.


Something I have always known about Aaron is so much of our experience with him is out of my control.

Acceptance.  That was important. Crucial.  Something I prayed very hard for.

People ask me all the time if "they" think Aaron will talk one day. 
People have such faith in  the "theys" of this world.
"They" know squat.

Even as I type this, the Spirit gently reminds

He does. 

Heavenly Father is the ONLY one who knows how Aaron will progress in this life.

I'm reading a book called Left Neglected by Lisa Genova (apparently her third novel is going to be on Autism, which I can't even tell you how much that thrills me-- I LOVE her writing)

This one is about a woman who due to a brain injury doesn't know the left exists, doesn't see it, doesn't know she has a left side to her body... it's all super fascinating. 

Right now in the book, she's being sent home. She's not rehabilitated, the insuranceis just gone, so there done and she's going home.

While my medical team delivered the good news to me in super-cheery voices ad faces dressed I community theater smiles, I sat silent, stunned, expessionlist. here I am sitting in a rehabilitation bed in a rehabilitation hospital, working hard every day in my rehabilitation sessions, ll the while thinking I would be here until I was rehabilitated  as it turns out, this was never the case. And the jokes on me. 
Here's what I learned this morning, In a world of rehabilitation...if a patient's condition is slipping downhill, the patient stays. everyone believes,  We must save her. Alternatively, if the patient is making significant strides toward wellness, the patient stays. everyone hopes,  We can still save her.  Acceleration either up- or downhill means more rehab. But standing still..Everyone agrees, Don't waste your time, She can't be saved." 

I guess my "community theater" smile is waning. Guess that's expected after a 3 year long run ( even as I type this I know we're just at the very beginning of everything). 
Time to change the set. I'm tired of my character, tired of the cast, tired of the same play being presented each day just for the curtain to close and rise again with the same old scene:

Enter optimistic, ever cheerful mother:
Alrighty everyone, let's save my son today! 
Enter chorus line of professionals, singing the same lyrics over and over again "Visual schedules, sensory breaks, track data...beeeeee consistant!"  It's not even clever, it doesn't even rhyme, and most of the time doesn't feel like any of it really works.  Feels more like someone happily opening up little bandaid after little bandaid and placing them all over someone as the bleed out. Less effective.

The whole time I feel like Aaron isn't even on the stage.

He's back stage, turning on and off lights. 

Huh, he hasn't done that in a while come to think of it. (Hope rises up, creeps up to whisper in my ear, See, he's getting better!" My grumpy pity-party flicks her off

The subtleness of his progression is agonizing, at time imperceptible, and yet if we don't look for every little tiny growth and celebrate the heck out of it, it's too discouraging. We can't keep flicking hope away, but sometimes she can seem a tad unrealistic.

By the smallness of his improvements (especially in comparison to all her has left to learn and gain) itself can be debilitating. 

But we don't say these things out loud. If you ask me I have a very well prepared speech about all the success with his "words" (words that are really just sounds most 18 month olds could easily master in an afternoon).

It is so hard to not be able to work harder, study longer, or even pay more money to MAKE HIM BETTER. Which I don't even think is the goal. But on a day to day basis, all this effort has to be pointed at something. 

And you just pray your guts out that your effort isn't flying out the door along with your half-naked son, happy to jump on the tramp the moment "therapy hours" are done.


The  kids woke up.... blogging ceased. mid-post. 

and I was stuck in the middle of my rant, yanked out before the catharsis was reached.

So I went about my morning, 
family scriptures
Aaron to school,
potty training (aka McKye peeing in underwear repeatedly), 
kissing hubby out the door

the usual while, my mind and heart still spun around the idea that maybe deep down I'd given up.

I threw the kids in the double stroller and heaved it down the street. I'd thought to visit a lady I know, the middle of her five kids is autistic. He's probably about my age, and in my mind she's a survivor, someone who made it through the marathon, still standing and therefore a beacon for those like me still in the trenches. She's the goal, the beacon, and basically my Gandalf/Obie-one/ least in my mind, oh boy, poor thing never asked for that! 

So I knocked on her door, managed about three sentences of small talk and then broke down. Blubbering out my turmoiled thoughts and worries. 

"He is ONE of your children"
"You have to find a way to find balance for your WHOLE family"
"Follow your intuition. There were lots of things "they" wanted us to do, that I knew wouldn't help him, so I said NO." 

Every word meant the world, her credentials?-- her life! She wasn't just offering me platitudes, she had stood where I am. She remembered. 

McKye was screaming for the park, and we'd been brave and wore undies, so a quick insufficient hug of thanks and we continued on.

"Higher!" called out McKye from the swing. 
I looked at my two sons, who have been so patient. Who want to "go higher" and grow, like their are capable of. My sons who have known no other mother, but the one who sets them aside for the all important "therapy".
And it was okay. 

McKye naps are becoming more sporadic.
Levi is so much more mobile and wanting to be involved.

They've waited patiently. And it's kinda their turn.

Yet in the same instant my heart refuses to abandon my first born. He has special needs (a politically correct term that stabs my heart: need, Need NEED! He especially needs me. 
My heart (my body, my time, my thoughts) all pulled in three directions, my impossible compass labeled Aaron, McKye and Levi, impossibly stretched, threatening to shred. 

I know this is normal. I know my friends struggle with meeting each of their kids needs.

I kept justifying, McKye and Levi get me in the morning when Aaron's at kindgergarten. 
But I realized it's not about schedule, it's about where my emotional and mental energies are going. Where they are being drained. Where they are being sucked.

It's not even Aaron VS his brothers. 

And there was the "uh ha!" moment. I wasn't resenting the time spent with Aaron, it was the time I spent talking/planning/ brainstorming about Aaron...when I could be with him.

I hadn't lost faith in Aaron at all.

I had lost faith in the direction we were taking.
And with the thought, I could breath again. (Do you stop breathing on bad days? I do!)

I started breathing, and started to read my book. A beautiful seen where her dispair gives way, and there is a resurgence, a catharsis that left me sobbing, there on the park bench, wiping tears while I call to McKye "good job honey! Yes, you went down the slide."

And I realized this is not the end of our story. We're still in the beginning chapters, where the drama and the conflict are still building. Where you learn to love and root for the characters, who you know by the end will make it through. Stronger. Better. 

It's hard sometimes here in the middle of the book.

And there's nothing I hate worse than a static character. I need to be a dynamic character, one that grows, that changes. One to root for. Not one of those whiny ones you end up not liking enough that you return the book to the library unfinished. Though there may be some heartbreaking scenes, I trust, this is a good story. Worth reading. Worth living.
Maybe not a simple fairytale plot, but at least a satisfying ending. maybe not your typical "happily ever after" but definitely some eventually and overall "at peace with it all"ness. 

I do have faith. I haven't lost it. I know my story will play out, and when I close that last page, I will breath that oh so familiar sigh, and conclude "That was a good one."

Our family scripture Romans 8:28:

And we know that all things work together for good to them who love God

and the second part I always forget

to them who are the call according to his purpose.

His purpose. I can have faith in that.



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I have gone back and forth, not knowing if I should write a comment on your blog- but I just have to. My dear sister, I have admired you for years. I came into the kitchen one morning on our mission and saw you reading the scriptures- as I looked at you, I thought- she...she is the kind of woman I want to be like. You said things that inspired me, encouraged me and made me feel happy. As I read your blog, hear your thoughts and feelings and see how real and raw and beautiful you still are- I think about that time I saw you in the kitchen- and again, feel as I did then- I still want to be a little more like you.