Archive for August, 2014

Sometimes blogging feels like tightrope-walking.  What to say, how to say it, what details to include.  There’s so much history here now.  Do I just tell a story, or maybe fill an entry with pictures?  What’s appropriate to put out there?  I usually just say what I’ve got to say, but sometimes it’s tricky.

If I’ve got an 8-second video of an 11-year-old Jonah with his wide, adorable smile, looking right at me and speaking clear-as-day:  fuck!  followed by my immediate response of laughter, is it cool for me to post that without seeming like I’m proud of it?  Hell, I laughed.  Sometimes you just gotta laugh.

The thing is I know (some of) who reads this blog, and I know if I say such-and-such it’ll get back to so-and-so, and then I have to decide how to tell my story or, sometimes, whether or not to tell it at all.

Andy and I have some unspoken tales of sadness and ennui that will likely never be told.  Macht nichts, I suppose.  Discretion, diplomacy.  I never was good with filters, so I err on the “sin of omission” side when necessary.  If I decide to tell a story I’m gonna tell the whole damn mess of it; I ain’t gonna sugarcoat it, so I better decide what I say with care.


On Saturday, somehow, Jonah managed to open (and set next to him) no fewer than three cans of white soda.  All this with three adults present.  Never underestimate Jonah’s quiet little conniving magic mind & abilities.

he's a quick little bugger

he’s a quick little bugger

It was Andy’s birthday, and my mom brought cupcakes.  Boo wasted no time in descending upon them.


Skittles and Chuckles too.  Somewhere in there is some actual food – a tune-fish sandwich – which he ate with near-equal fervor.

I was happy to get a few cool pictures with Jonah, which has become kind of rare:

Me & Boo

Me & Boo

Me & Boo, Number Two

Me & Boo, Number Two

When he is calm and affectionate, our son is a beacon of the purest lovejoy.

In one short video, though, you can actually see Jonah’s agitation ramping up…he shows it using his hands and then finally with a swatting motion.  You’ll hear his dad reassure him:  It’s all right, buddy. 

The triumph is that he did not swat at anything but the air, just that one time.  We were all talking, and he was being told no, and he had so many foods from which to choose.  The videos sometimes make it easier to discern what’s happening and why.  Hell, the videos could very well be part of the problem, even.  That’s why I take them without him seeing me, if I can help it.  Sometimes I take the time to watch them carefully, try to learn from them.

This one’s just fun – lighting the candles on the cupcakes and Jonah gets to blow them out after we all sing to Andy (shaky harmony compliments of mama).

It was a good visit.  I hope Andy had a wonderful birthday; he deserves it.  Jonah’s had this whole week off from school and I think Andy’s picked him up for a visit every other day.  I always knew he’d be a wonderful father, before his child was even a notion.  He and Jonah share such a special bond.

Also, endeavoring to remain self-aware and true to myself, I have broken off my new relationship with Jim.  The reasons are many but none of them call into question his goodness, strength of character, or warm heart.  Some part of me wishes he could have met Jonah, for I think Jonah would have loved him – and I know Jim loves children.

I also am examining what I say in general – and how, and to whom.   These things can have a lifelong impact for good or ill.  I’d like to encounter everyone I see with a smile, to behave in a positive manner, to think before I speak – and when I do speak of others, to always find the good to say.  It’s so easy to say you believe in something and then never bring it into reality.  What you think doesn’t mean anything at all unless your actions match your intentions.

“If wisdom’s ways you wisely seek, five things observe with care…to whom you speak, of whom you speak, and  how, and why, and where.”  ~ Caroline Ingalls

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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.


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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Have I ever mentioned that Andy’s landlord looks like George Clooney?  I call him George every time I see him – so much so that I can’t recall his real name at this writing.   Last Saturday when mom and I visited Jonah, I saw “George,” about to strap on his helmet and take his Harley for a ride.




I didn’t even KNOW he had a Harley.  You could have knocked me over with a feather.

He promised that next time he’d take me for a quick spin, so you bet your ass I’ll be leaving an old pair of jeans and socks & boots at Andy’s for the mere possibility of such a cool occasion.

Jonah was good – funny and sweet – for most of the time.

Grandma bought creamsicles and took pictures of boo & me outside

Grandma bought creamsicles and took pictures of boo & me outside

We got silly

We got silly

And then I started playing with my photo editor

And then I started playing with my photo editor

Until it was over the top

Until it was over the top

Jonah's hamming it up with grandma

Jonah’s hamming it up with grandma

Jonah had one serious aggression at school since then, and Andy has blessedly volunteered to take the calls from the school about such things, because I think he can “shelve it” better than I can, at least right away.  A call to me from the school almost always results in my imagination taking me, sharp-focus, into the classroom where he has perhaps just taken a chunk of his speech therapist’s hair in his fist and is kicking mightily and thrashing around.  Where it takes another caregiver to help the first, to keep Boo safe and everyone around him as well.

And then I inevitably tear up, and can barely thank them for calling, and when I hang up, I usually cannot but allow myself to cry, and for so many reasons, some of them stupid.  I cry because I am upset that someone – anyone – got physically hurt, and that my son was involved in any of that.  I cry for the grueling everydayness of it all for those who have chosen direct care or special ed teaching or just working at Anderson…and how amazing they are, and how the last thing they deserve is to be kicked, scratched, bit, head-butted, whatever.   I cry because I’m helpless.  But really I don’t want to write about why I cry anymore when they call.  I just do, and it’s easier to hear the news from Andy (always slightly sugar-coated, I imagine) — unless of course it’s an emergency.  I’m grateful Andy’s willing.

Tomorrow he’s driving Jonah up to grandma’s house (near me) and so he will get to see train, take baths, eat everything in sight, and go swimming in the next door neighbor’s pool.  No diving anymore, at my mom’s insistence, even though I know Boo could easily dive in the 4+ feet of water in that pool & I’m (admittedly, perhaps foolishly) unafraid.  He always knows where he is in this world – in the car, in the water, while climbing rocks or waterfalls – he never falls, never fails.  But he likes jumping in too, so that’ll be good enough for him.

At least at Anderson, the deep end is deep and I’m sure he’s honing his diving skills (and swimming along at the very bottom of the pool like an undulating eel).  I wish I could watch him more.  Astral project into his room and hover just above him, singing him silently to sleep or wakening him with mamalove.

Perhaps certain portions of the school and residences could have 2-way mirrors, so parents could come and just watch their kids.  I want to see him in what is now his own environment, his turf.  Maybe I can talk to his behavioral specialist about taking a day and coming down to “spy” on him. Or something.

With Jim I could eventually even come down and take him to the park or  bowling or to the movies… of course after Jonah gets comfortable with him.  I think Boo will love him, and I think Jim and Andy will get along just fine.  I hope Jim loves my Boo, but I’m so in love with my boy that I can’t imagine how anyone could not love him.

We’re coming up on the third anniversary of the day we placed him at the Anderson Center for Autism.  At 12 years old, that’s nearly a quarter of his life.  What if we hadn’t done it?  What if we just kept dealing with it, like those people on the severe/classic autism group on Facebook who seem to also need (but can’t, or won’t, or don’t want to) seek residential care?

There are undoubtedly parents who pour every ounce of sweat and every penny of finances and seek out the best of therapists, doctors, and care workers for their child, to keep their child home, and they are to varying degrees successful.  Every family is different.  Every kid with autism is different.

We went a different route, but it didn’t feel at all like a choice.  It felt like a life vest, thrown with two seconds to spare, to save us all from drowning.  And now it feels right for Jonah, which is of course what we wanted – for him to experience every single piece of knowledge and caring and socialization and fun they could safely offer him.

What a strange life we live, Andy and me, in our separate worlds, broken and pieced back together, he and I.

Miss Jonah a lot tonight.  I can’t wait to see him smile and splash, to catch a train and a bath and some loving from us all.

Sleep tight, Boo.   Mama is right here loving you.

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