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Posts Tagged ‘time’

Got to see my Boo twice last week – on Friday for his JRA doc appointment, and the next day, down in Rhinebeck with my mom.

He was a pisser at his appointment —  but also a weird thing happened both then and again today.  When they first called Jonah in for height and weight, he got on the scale and stood pretty still.  The nurse said “84 pounds,” and I was shocked at how heavy he was.  I mean, he looks skinny and lithe like his mama.  “Wow,” I said.  “When I was 84 pounds, I was in junior high.  And I was skinny!”

Not thinking. 

Not remembering, were Jonah a “normal” boy, he would be in junior high.  He would be  entering 7th grade this year.  To me he is my very little boy, my baby-est angel.   It is so easy to regard him as such.  Like when we lie down together on Andy’s bed, one near each side, sometimes holding hands, and we stare into one another’s eyes – he often sucking his thumb, for “quiet time.”  I think I will always have quiet time with my Boo.  In so many ways he will stay very little.  Can I listen as the watch unwinds?

This is where I suppose I am blessed, for other parents must lament the speed with which their children learn and grow, whereas I may yearn for Jonah to stay small physically, but the learning part is comparatively like molasses, and the rest of him is a poorly engineered roller coaster ride.

No lamentations from us about too-speedy entry into higher schools, middle to junior high to high school, high school to college – all the kids’ birthday parties, little league games, soccer mom hoopla (some of which I’m not sorry I missed out on, truth be told).  All the PlayStation (?) games at $100 each, the must have clothes, proms and clubs and nightmares, worries lies anxiety want-to-fit-in rebellion wisdom questioning making friends.  Jonah won’t have any of that, and usually I feel like that’s okay.  Maybe it means I was supposed to be his mama.

Is autism really just an internal trade, pure innocence for societal functionality?

Today I picked up my new migraine meds at the pharmacy, and the all-time awesome-est pharmacist was there.  She has seen me through all kinds of drama and tears, and we’ve talked lots about Boo.  She asked about him today, and I said,  “He’s good.  He’s loving music.  His two current favorite bands are Prince and Public Enemy.  As loud as it will go,” I added, laughing.

“Well he sounds just like a teenager, that’s for sure,” she replied.

Yeah.  Teenagers like to play their music loud, don’t they?

Earth to Amy:  Jonah’s autism does not define him.  He is also (nearly) a teenager.

Breaking it down and taking it back to the doc appointment.   Took a while for the doc to come in, so Boo’s two caregivers (J and P) and I occupied him through his mischievous, shriek-y, giggling wait time.

OLYMPUS DIGITAL CAMERA

I brought a package of tic tacs and immediately Jonah held out his hand.  “I hold it?” he asks, when you’re trying to give him just a little bit of something, or dole it out.

Yo yo yo, big pimpin', spendin' G's

Yo yo yo, big pimpin’, spendin’ the G’s. He cares little for paper money, though they’ve been teaching the abstraction of it all at his school and he is learning.

For the doc appointments I comply and hand him the container.  “I want help please?” he asks, trying to open the small box.  I open it and hand it back.  Immediately he shakes it up and down and back and forth, scattering every last tic tac around the room and on the floor.

Now he lazily seeks out approximately 1/3 of the tic tacs he has just scattered and places them back into the box or lines them up in front of him.  Doc says he is fine and we may want to talk to his retina doc to see if it’s time to titrate him off the methotrexate, and eventually, hopefully, the Humira as well.  Both docs are women and I stand in awe of them, so grateful to all they have done for Boo, for their kindness, their intelligence — even strangely, their beauty — as I believe it rises in those full of love and doing good in this world.

Saturday was a forgot-my-camera day, which is sometimes okay.  I don’t always have to play photojournalist.  Jonah wanted to watch train on the computer, loud as all hell.  He asked for freight train and since pretty much any railfanner video out of Voorheesville is of freight train after freight train, I just gave him a 45 minute video of that.  It was a typical-good Jonah visit, complete with swim-up lunch bar and car ride to transfer station. 

When I gave him his bath I even got him to sing some Guster.  He knows Keep it Together best, so I’ll usually begin “When we all….” and then fade out and let him take over.  It’s pretty cool how well he sings, both (mostly) in tune and rhythmically.  Here’s the “famous” video of him singing it when he was 7, on a rare occasion when he allowed me to film him at all.

I’m tired.  Almost no sleep last night.  It felt as though time were traveling backward.

“Listen as the watch unwinds….”

(from Come Downstairs and Say Hello)

by Guster

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Saturday, 8:07pm

Today feels like two or three days smashed together – one of those days when by 8pm, the morning feels like it was yesterday or the day before that.  Time is strange.  I slept in til 8:30am or so, a beautiful thing.  I ate a delicious breakfast M made for us.  I went to a hair salon and got my hair cut, highlighted, and colored auburn.  The I met D at the house at 3pm to visit with Jonah, help her watch him, and give Andy a break.

Now I’m home again; it’s 8pm.  And that breakfast seems like three days ago.

I can’t imagine what life is like for Andy.  I’m sure it could be worse, but at times it feels like Jonah is thoroughly and utterly of the highest maintenance there is.  Andy left when D & I got there, and while this is not exactly the order in which our four-hour chunk of time unfolded, it’s pretty close:

We start off with a car ride, and I tell you if it wasn’t so un-green and crazy-expensive to do it,  I swear I’d drive that kid around forever, because strapped in and listening to his favorite Guster album, the one he calls Cranberry Guster, he is mostly just fine.  While it is true he’ll hit the window, kick the console, and throw anything in the backseat at you, he mostly is calm, sucking his thumb, occasionally singing or humming, and generally pretty happy.  Once it is more spring-summery we can take him to the Rensselaerville Falls or wherever else he wants.  The trick, though, is to never be too far from the house so he can change his mind on a dime, request grandma or home, and be within a reasonable distance of said request – preferably on a familiar path so he can direct us this way or that way as well.

I understand it might seem like we spoil Jonah, but at this point we’re just trying to survive.  When the Tasmanian Devil is in your care, you’ve got to mitigate his crazed behavior any which way you can.

After our car ride we go into the house because it is icky outside, windy with cold drizzle.

Brownie meal? he requests.  Okay, boo, mama will make a brownie meal.  Funny thing is he rarely eats the damn brownie.  D follows him around the house while I microwave the meal.

But before I’ve even presented him with the meal, he’s requesting something else: Green leafy?  So we put a plate of salad greens and blue cheese next to his brownie meal and he requests white soda and D pours some because he’s peed on the potty but he’s not sitting down to eat – he’s running from one room to the next, alternately requesting daddy and downstairs and brown car (my car) and bath.

Of course there are small minutes, tiny pockets of time when we engage him with black camwa or a bouncy ball, but mostly it’s near-constant ever-changing activity with a side of trouble brewing.

There are two baths during our stay and very little eaten of his dinner.  There is plenty of agitation and swatting.  D needed to hold him in his room because he lost it and tried to attack both of us.  She’s trained in the holds because she teaches and works with kids like Jonah, thank God, and she’s smart and sharp and unafraid.  Both D and I are constantly on guard, and if Jonah approaches we almost always wince and/or tighten, backing away, expecting him to aggress.

I’m no help while she’s calming him so I go in the kitchen and do what I usually do when something like this happens:  I clean.  I can hear Jonah kicking the floor and I ask D if she’s okay and she answers yes almost cheerfully so I wet-swiffer the kitchen with the force and efficiency of Rosie the Robot.   I go into “let’s clean something” mode because (a) Jonah has usually tipped over chairs, tables, food, and whatever else he can reach to throw, and (b) it makes me feel like I can do something useful and gives me a sense of control in a situation that is completely out of control.

But Jonah’s new weapon comes with its own ammunition:  shit.  At one point when I am putting away the swiffer and D has him on time in his room, he grunts hard until he is purple and then bolts from the room, his hands brown with poop.  He runs down into the far corner of the basement, making brown prints on various parts of the wall on the way, and then bangs on the wall with both palms before running back upstairs to tip over a kitchen chair, break an end table, and return to his room to try and attack us again.

We put him back in the tub; D gets him his green soap while I go through the house cleaning the walls and upending the table and chair.  After calming down and having some more quiet time in his room, he runs back out, requesting brown car and wanna–go-see-train and daddy.

And so on.

The kicker is D tells me Jonah’s much better this weekend than last, when I was at the convention all weekend.

Meanwhile, and I know I invite this because I blog publicly, I’m hearing suggestions from everyone who e-mails me.  Try this.  Take him here.  You have to (fill in the blank).  Sometimes the comments and suggestions are diametrically opposed.  I appreciate this little supportive community following my crazy-ass life more than you know, and I listen and hear you all.  Trust me, we’re looking into everything and doing all we can within the realms of possibility.  We are going to make mistakes and we are going to fuck things up sometimes.  But we are trying hard to make things better for our son and I’m just here to tell the story.

I have to again conclude by telling you that Andy is bearing the lion’s share of all of this with remarkable aplomb.   I am grateful for his fathering and nurturing our boy…for keeping him safe and well fed and as happy as possible…for taking him on endless rides in his little red wagon and in the red car and to grandma’s…for getting him ready for school and on the bus every morning and off it every day…for enduring scratches, bites, kicks, head-butts, sleepless nights, and loneliness.  I tell you I could not do it.  I know this with a certainty that feels like shame.

I love my son with all my heart but I could not do it.

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