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Posts Tagged ‘JRA’

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.

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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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Sometimes Boo’s autism feels like a chess game.  Right now we keep putting that motherfucker in check.  We’ve learned, studied the books about moves and counter-moves, strategies and systems, and we are all becoming a better opponent.  Check.

The pendulum has slowed to teeny movements of to and fro –  a weakening player in the game.  Check.  I believe this because I need to believe this, no matter how many times the forward motion is halted, no matter how many times I lose a chess piece or a piece of my mind.  It’s as simple as it is difficult to learn and accept.

Do I sound “crazy”?  All these mixed metaphors.  I feel it these days, the crazy, all alien and weird inside my house where I work and am alone with a cat and a dog and no kids and no definition of myself to embrace.  It’s okay.  It’s okay, I tell myself.  Everything is okay.  Boo is doing so well, and you have escaped the rat race, and now there is peace in your home.

Still I am alien, a unicorn among moms who either have their children or they don’t.  And if one is gone there are others left behind.  The truth is I don’t want other children with me here to raise and figure out while Boo is away from me.  We only wanted one child, Andy and I.

But I am blessed and I am grateful and really all it takes to bring me back is to walk away from the chessboard, take a deep breath, and allow myself to be filled with those feelings of gratitude and grace.  There isn’t anything to fear, and worry is a waste of my time.  As I get older I realize more and more that everyone has their own shitpile, visible or no.

The pain we feel and the desire to feel happiness is what makes us most common as human beings, after all.  You are never alone, and neither am I.

I’m going into blah blah blah mode.  Red light!

Everything since last I wrote has been pretty much awesome with Boo.  Mother’s Day he was happy and sweet, and I’ve got lots of cute pics to share from our visits.  I am so lucky to have such a  precious son!

Jonah and me on Mother's Day 2014

Jonah and me on Mother’s Day 2014

The Mother's Day card Jonah made for my in school.  His teacher even mailed it to me!  This is side one...

The Mother’s Day card Jonah made for my in school. His teacher even mailed it to me! This is side one…

...and side two, which put a lump in this mama's throat...

…and side two, which put a lump in this mama’s throat…

Happy boo having quiet time on the big blue bed

Happy boo having quiet time on the big blue bed

We had to wait an hour and ten minutes for the doctor this time, and Boo was sooo good!  Much thanks to P and J, who bring him up from Anderson to the doc appointments and keep Boo from boiling over!

We had to wait an hour and ten minutes for the doctor this time, and Boo was sooo good! Much thanks to P and J, who bring him up from Anderson to the doc appointments and keep Boo from boiling over!

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hanging out with grandma

hanging out with grandma

very silly boy. (no, i did not let him lick the $10 bill he's holding).  lol

very silly boy at another doc appointment. (no, i did not let him lick the $10 bill he’s holding). lol

I can't believe how big he is!

I can’t believe how big he is!

People say he looks like me.  Here's me at 10 years old.   What do you think?

People say he looks like me. Here’s me at 10 years old. What do you think?

Love to all…. & sending prayers and strength to my peeps in the autism groups I belong to on FB.

 

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