Posts Tagged ‘Hang On’

“If we fell inside a forest
Would it make a sound?
It doesn’t seem there’s anyone around;
Days are long, we carry on
But still don’t understand…”

~ Hang On, Guster

I won’t go so far as to say we “won the lottery” on Monday, driving Jonah to and back from Tradewinds, but it sure could have been worse.  For the most part Jonah was okay, except for two times when Andy rode in the back with him because he was hitting the window and acting squirrelly.  Plus he kept saying Simon?  Simon? Simon? at ritualistically annoying intervals (Simon is a friend’s little boy Jonah almost never encounters).  We’ve learned to just agree to whatever he’s going on about, in general, so there was a lot of either Andy or me saying Yeah, Simon! That’s right, buddy!

We’d brought lots of snacks and had fed Jonah breakfast, so the ride out was an odyssey of peanut butter crackers, cheetos, and Sun Chips with sips of Elmo juice boxes and lots of crumbs in the backseat.  When we arrived we were thankfully greeted quickly; Jonah was obviously confused, I’m sure hoping we weren’t at some new doctor’s office.  He attempted to go right back out the door, mumbling “home,” then tried to climb his dad, but we managed to get him to walk down the hall, out a door, down a path, and into one of the residences where several staff members were waiting to meet and observe him.

We weren’t there for long.  Jonah didn’t really want to explore and seemed nervous, though he didn’t attack and we managed to answer some of the staff’s questions while watching him.  Jonah briefly played with a bead runner and sat on a couch, then again asked for “car ride” and “home,” so we went back through the school building to the main entrance, said goodbye, and started home again.

Andy and I have a hard time discussing details about the residential educational places we tour.  It’s a surreal experience, touring and choosing a place to leave your child in others’ care…not for a few hours, or a day, or a weekend, but for some indeterminate amount of time – months?  Years?  We don’t even know.  So I just asked Andy what he thought of the place and he briefly responded in the positive; we drove away from Tradewinds with Jonah in the back innocently asking for swim pool?  swim pool?  train?, not knowing his very life and future are being decided by his two scared parents in the front seat.

This whole week is vacation for Jonah, so Andy’s got his hands very full.  It’s hard to describe an entire day of caring for Jonah, not to mention with the limited options imposed on them by the cold, the aggressions, and Jonah’s ever-increasing capricious nature about what he wants to do, where he wants to go, what he wants to eat…you name it.

We don’t know if his latest med change has caused him to act more unsettled, but Andy tried the klonopin with Jonah a few times as needed and it only seemed to make Jonah even less able to focus and function – so he stopped using it.  Tomorrow I’m going to call the psychiatrist who prescribed the meds and see what he thinks.

All this week I’m going straight from work to the house to spend some time with Jonah so Andy can have a little break.  Of course they are also going to my mom’s every day, but she hasn’t been feeling well and Jonah doesn’t want to stay that long lately.

When I arrived today Andy told me Jonah had barfed three or four times but didn’t seem sick.  One of the bummers of Jonah’s level of autism is he doesn’t know enough to run to the bathroom and puke in the toilet.  He just lets go wherever he is, and the best you can do if you suspect it’s coming is to chase him around with a bag or a bucket.  If you’re alone with him, you’re cleaning in one spot while he throws up in another.  It gets old quickly.  And besides being sick all over the house, Jonah also was aggressive all day.

When I got there around 5:15, Jonah was in his room on a time-out.   He was glad I came, so when he’d served his time, we started playing in the bedroom, his recent choice for a fun place to play.  He seemed fine, jumping on the bed and singing along when I invented songs, tickled him, and took his picture with the camera.  I’d brought him some colored straws with sparkly strands hanging off them and he clutched them happily, waving them around.

Andy said he’d been saying mama’s comin’ all day, so I was glad he was a good boy for me and enjoying himself so Andy could have a break, albeit a short one.

I’m sure Andy’s looking forward to Monday like never before; in the meantime, I’ll help as much as I can.

Next month, it’s on to Springbrook.  Until then, we, especially Andy, will be getting through the long days, carrying on, one minute at a time.

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“Stuck without a captain or a chart,
No one seems to know just who to follow anymore;
Hang on…hang on…there’s a twilight, a night-time and a dawn.
Who knows how long? So hang on…hang on.”

Hang On – Guster, from Ganging Up on the Sun

So I hang on and I hang on and I hang on.  Now I’ve thrown myself back over to the safe side of the cliff.  Is it dawn?  There’s light here.  Solid ground.  And I’m still standing (raking, even, today) in the autumn-chilled sun of mid-November.  Andy is helping with Jonah again and it is near bliss to be able to go into the woods and sit or make pictures

…consciously dropping my shoulders, breathing deep the clean forest air.  I’d almost forgotten I’d have help again.

Jonah attacked once so far today when he was with Andy, in my car.  That safety harness I bought has proven worth its weight in gold.  Now Andy’s off to his new job and Jonah’s napping on the big chair in our family room with a Mother Goose book clutched in his hands; I’m stealing a minute here before we go to my mom’s for spaghetti dinner.

Yesterday when I got home I found a reusable green grocery bag on my porch with a card, chicken dinner, black soda, and some other goodies in it…from friends J & Mi (I’ve got a whole periodic table of the elements going on here with my ‘identity protection system’).  It is a blessed thing to not have to prepare food, and it is humbling to know that people care.   I’m grateful – even as I bitch about our Lifetime TV existence I am grateful.

Andy took Jonah to see Albany’s Veteran’s Day parade on Thursday, and as they were walking from where he’d parked to a decent vantage point, they had to step between two bushes on either side of the path.  Andy tells me that a big crow cawed, practically right in Jonah’s ear, and Jonah stopped short in surprise.  Then the crow cawed again, and some other birds in the other bush answered, and Jonah just stood there, half-fear and half-fascination on his face.  Andy says finally he had to drag Jonah away – that the birds themselves were probably enough of a parade for him.

There’s a fable fit for Aesop in there somewhere:  Jonah and the crow.

I guess the actual parade didn’t do much for him, with all its too-loud brass-filled bands and assorted military vehicles & marching veterans.  He put his hands over his ears for a lot of it so when there was a break in the action, Andy led him away and back to the car.

Moral of the story:  A parade in two bushes is worth one marching down the street.

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