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Archive for the ‘grandma’ Category

okay enough

Posted in Anderson School, autism, behavior, grandma, The Anderson School for Autism, Uncategorized, tagged , , , , , , , , , , , on September 3, 2011| 9 Comments »

My mom and I drove down to visit Jonah today.  Andy’s at a family reunion this weekend, so it’s a good time for us to go.  Andy’s been visiting Jonah more often now that he lives about 5 minutes away.  It’s pretty down there, and I guess they weren’t hit much by Irene, which is good.  Who would’ve thought there’d be so much devastation so near the Capital District, so far inland?  Some towns were damn near destroyed – Prattsville and East Durham, Middletown and Schoharie.  Irene was almost like a tornado, the way she hit here and skipped there.

I’m working on getting estimates for my backyard fence and tree removal; last night my next door neighbor called to tell me her insurance company told her to tell me to call my insurance company, even though it’s her tree.   I know I won’t get anyone this weekend so I’ll try on Tuesday.

So this morning my mom met me at the house and she’d brought along this cool low trike that’s supposed to be good for kids 8-11 labeled “for Jonah Krebs and friends”…and I brought some things for the 10th annual Gala‘s silent auction Oct 1, to benefit the school.  We got down there in good time and talked a little, both of us excited to see Boo and hoping he’d be happy and good.

When we arrived and knocked on the door, the house director was the only one inside.  Jonah was outside on the playground, he told us.  I took a quick peek in Jonah’s room and we spoke with the director for a few minutes.  My mom wanted to know what the children have to drink with dinner.  “Milk or water,” he said, “and they get juice with snack”.  They have a dietician and a nutritionist on staff, so the kids aren’t getting junk, which is really good to know.

Last night when I called to see how he’d done that day, the care worker who’d been with him all day told me he ate all his own dinner and half of hers.  She wasn’t mad, either.  She laughed; she seemed to really like Jonah.

He hadn’t had an aggression in two days. The director knows we sneak him black soda when we visit, though, and he’s okay with that.

Today’s black soda Jonah face looked like this:

We ate tuna fish sandwiches, potato chips, and yummy-grapes in the humid mugginess of noontime.

He’s growing out of the pair of jeans he was wearing, so next time I’ll bring him new ones.

He was restless, a little confused.  Quiet.  My mom wanted to see the pond so we convinced Jonah to walk down to it; there’s a rowboat and sometimes they take the kids fishing there:

When Jonah emptied his plastic black soda bottle, he told me all done and then requested car ride?

I looked at my mom, and she at me, and we were hot as hell anyway, so we headed back up the hill and into brown car.  We cranked the A/C and drove straight so we wouldn’t get lost – past the Vanderbilt Mansion, into Hyde Park, past FDR’s birthplace, then finally turning around to head back.  Jonah was good, sucking his thumb and looking out the window.  Every so often my mom or me would turn to engage him, drinking him in to last us to our next visit.

When I started to pull back in to Anderson, Jonah begged:  more car ride? …so I went in the other direction for a short distance before reaching a huge park where I turned in, driving slowly down the lane and into a tunnel of forest, then over a bridge where there were train tracks below.  Jonah looked down the tracks and cried home?

His little brain must have seen the train tracks and triggered memories of going to see the train, every day, sometimes several times a day, back at home.

Home?  he asked again, pitifully.

Later on my mom and I both admitted that, at that moment, we were hoping against hope that he meant his house at school – and I think we both knew damn well that he didn’t mean that at all.  I glanced over at my mom and saw a knife in the heart look on her face; my eyes blurred, I set my jaw and fought the tears.

Then Jonah got pissed, kicking the console hard with his sneaker.  We got him back to school by carefully telling him things like home later and let’s go to the playground!

We made it to the playground and Jonah let me push him on the swing for a few minutes, but then he wanted off.

Home?!! he cried-demanded, grabbing a handful of wood chips and tossing them angrily at us.  The house director must have seen, because he came out to meet us.  Jonah wailed and cried for a few seconds, then, as if he knew it would be fruitless, he seemed suddenly resigned.  My mom and I both hugged and kissed him, (I inhaled him like I always do), and we told him we’d be back soon. Then we said goodbye, watching as Tim ushered him back inside the house.

I don’t know why today, why this time, but when my mom and I got back in the car I started crying harder.  I switched to sunglasses, put on Rachmaninoff’s piano concerto #2, and drove us away.  It felt awful.  Things ripping inside me.  My only child, crying for home...then I spoke aloud, as though to myself.  “We have to be grateful.  We have to stay grateful.  Thank God it isn’t 1950 or 1590.  Thank God Andy lives so close to him.”

There is a bridge we have to go over to get back on the Thruway.

The bridge railing is low and the view of the Hudson River on either side is beautiful.  There are these little green signs posted at two or three places on each side, reminding everyone that LIFE IS WORTH LIVING.  There is a message and a phone number at the bottom.

I thought about how it really would be a perfect suicide spot… so easy, so pretty, just let yourself fall — and how somebody somewhere thought they should put up the little green signs reminding people that LIFE IS WORTH LIVING.

I wondered how many people had suicided off that bridge, and who they were, and how old, and why they did it.

And then I wondered how many people had seen the little green signs and read the message that LIFE IS WORTH LIVING and called the number and spoke to some caring person, probably a volunteer, who listened.  Just listened.

And how many of those people who were heard ended up changing their mind, and lived because of it.

Sometimes I think suicide is a little bit like quitting smoking.  There are these terrible times you don’t think you can stand, and if you let yourself, you won’t be able to stand.  You’ll go buy the cigarettes.  You’ll jump off the bridge.

But then if you can just hang on, push through, keep it together, with whatever means you’ve got, it will be okay again.  Okay enough, anyway.  Okay enough to get you to the next breath, the next day, the next smile.

Okay enough to make you realize, with no doubt, that LIFE IS WORTH LIVING.

(Cigarettes, on the other hand, are a different story).

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two visits: to boo, from irene

Posted in Anderson School, autism, grandma, The Anderson School for Autism, Uncategorized, tagged , , , , on August 29, 2011| 9 Comments »

So on Saturday my mom and I drove to Andy’s cool little apartment in Rhinebeck, then followed him to the school.  To be honest I didn’t really want to go just yet.  I’d imagined Boo happy, playing, eating good food and watching videos, walking around the campus with one of the direct care workers, swimming in the pool, riding his scooter.  I didn’t want him to see us and remember – to cry mama, to ask for home or daddy – not yet.  I didn’t want to have to drive away from him. 

My mother, though, wanted to see her grandson so much she swayed me.  And after all, I missed Jonah lots too.  I tried not to focus on the chaotic scenario I secretly feared as the three of us arrived.  When he first saw us, Jonah ran away toward his room, then came forward smiling and happy to see us.  We set up a little picnic outside the visitor’s center and as he looked from one of us to the next, grandma pulled out a bottle of black soda!

Heaven.  He’s a walking commercial for the black soda, just like his mama.  Not bragging, just saying.

He didn’t drink much of it, actually.  We all ate sandwiches and chips, Jonah alternately sitting down and walking a few feet away, a little unnerved but not upset:

He asked for playground and we brought him there – it’s right next to his house.  He loves that playground and has taken interest in things like swings again.  For so long we couldn’t take him to playgrounds for fear he’d hurt other kids, and it was really cool to see him able to play again, smiling and laughing.

Then we went for a short ride in brown car, Jonah grinning and thrilled to be next to grandma.

At one point he had a little aggression, but it only lasted a few seconds and then we drove back to the school.  Everyone working in his house seemed to like him, and the kids seem pretty cool.  When we first walked into his house, one boy led me by the arm over to a computer, smiling up at me as if I were his best friend immediately. We briefly met some of the caregivers before going outside with Jonah for our visit.

At the end of our visit, my mom wanted she and I to leave a few minutes before Andy, “so we wouldn’t all be leaving at once,” but I think she wanted to spare us the possible scene of Jonah crying and calling for us.   I don’t know how much Andy was downplaying it when he told me afterward it wasn’t too awful, but I’m grateful he took on the emotional burden of being the last one to leave Boo behind.

It was strange; all three of us broke down at one point or another, but not at the same times, and none of us for very long.  We kept it together pretty admirably, I’d say.  It is taking a lot of getting used to, this strange, new path.

Yesterday M and I were almost laughing from his snug basement apartment about how hurricane Irene turned out to be not much at all – just a day of endless rain and wind.  We stayed in and didn’t think much about it.  This morning, though, I had to detour to get around a huge tree that’d fallen across both lanes of Western Avenue.  By the time I got to work and saw the branches all over our parking lot, it occurred to me that maybe I should stop home on my lunch hour, just to check on things.

Here’s what had happened to my back yard while I was laughing at the storm:

Our next door neighbor’s enormous maple tree uprooted and fell at an angle, smashing the fence & laying in my yard.

This is the view of the root of the uprooted tree, which pried their patio up at an angle and set their picnic table askew.

Tree everywhere!  I guess Irene didn’t appreciate us laughing at her.  Instant karma, kinda…

Everyone is grateful the tree fell in the direction it did and that no one was hurt.  M and I are slowly moving back into the house over the next month or so.  It will be nice when that’s all done.

My mom and I are planning to go back and see Jonah, by ourselves this time, this Saturday.  So far so good – even Irene spared us her worst.

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buddha, mary, kurt vonnegut, gandhi, & w.w.

Posted in autism, grandma, placement, tagged , , , , , , , , on July 26, 2011| 3 Comments »

“The seed of suffering in you may be strong, but don’t wait until you have no more suffering before allowing yourself to be happy.”
— Thich Nhat Hanh (The Heart of the Buddha’s Teaching)
 
I am losing a lot, like it or don’t, as P would say.  But I’m tired of myself, tired of carrying on in my grief, so I’m turning (as you may have noticed) to Thich Nhat Hanh, one of my favorite Buddhist monks, for guidance and peace.  I’m turning to the Buddhist view of impermanence – that which says nothing has permanence, that permanence is an illusion we cling to.
 
Well I’m a Buddhist by circumstance, then. Yet I am also many more things: raised Catholic, I still go to Mass on occasion and cling to my roots, finding solace in the ritual of the Mass.  I may be other things I haven’t even discovered yet.  So it goes, to throw in some Vonnegut.  This is my favorite little story about Kurt Vonnegut, taken from Wikipedia:
 
In the mid 1950s, Vonnegut worked very briefly for Sports Illustrated magazine, where he was assigned to write a piece on a racehorse that had jumped a fence and attempted to run away. After staring at the blank piece of paper on his typewriter all morning, he typed, “The horse jumped over the fucking fence,” and left.[17] On the verge of abandoning writing, Vonnegut was offered a teaching job at the University of Iowa Writers’ Workshop. While he was there, Cat’s Cradle became a best-seller, and he began Slaughterhouse-Five, now considered one of the best American novels of the 20th century, appearing on the 100 best lists of Time magazine[18] and the Modern Library.[19]

The lesson I take away from all of this is I can’t abandon life by sitting in my soiled self in the sorrowful, shallow end of the pool.  I have to keep writing because it saves me.  I can come out the other side of this, make myself into someone good, be Jonah’s mother as best I can, be the change I want to see in this world (thanks, Gandhi) instead of complaining about the changes that aren’t happening.  I may moan and rave, cry and bitch, but I’m not going down without a fight.  I am recharged with people all around me, some who don’t even know me.  They care and they tell me so and it helps like they will never know.  I am not alone, I tell myself, mantra-like.  I am not alone.

Mary helps me too.  Yes, that Mary.  The mother of God Mary.  She sure had a difficult child, an only child (it seems) and she lost him too, in many ways, before she really lost him.  She understands. 

  • St. Josemaria Escriva: “Love our Lady. And she will obtain abundant grace to help you conquer in your daily struggle.”  “When you see the storm coming, if you seek safety in that firm refuge which is Mary, there will be no danger of your wavering or going down.”

How can I believe all these things simultaneously? 

“Do I contradict myself?  Very well, then; I contradict myself.  I am large – I contain multitudes.” ~Walt Whitman

(I’m actually quite scrawny, but I think Walt was being metaphorical). 

I am going over to see Jonah-boo tonight, to take him on the “Groundhog Day” tour of his favorite things:  the train, car ride, maybe grandma or a peanut butter roll.  If it is warm enough, swimming and splashing. 

I am looking forward to it, whatever it brings.  I love him so much.

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empty red wagon

Posted in autism, behavior, grandma, placement, swimming, trains, Uncategorized, tagged , , , , , on May 30, 2011| 2 Comments »

This all starts Thursday night and I suppose could make up a very long entry.  I don’t know what’s going to happen yet in the writing of it, but the living of it has stretched out miles in every direction.

This is Jack, M’s 90lb. 2 year-old dog (American Bulldog + maybe some mutt) named after Laura Ingalls Wilder’s childhood dog:

Jack loves to pose, statue straight, like in this picture.  He’s a sweetheart of a dog, curious and full of life, trying to jump up for a chance to lick you.  But he’s also all-muscle strong, and when I took him for a walk Thursday evening and he saw a squirrel, he launched himself forward full-speed; I held tight to his leash and was dragged up and off my feet like a fish on a line, landing with a hard smash on the side of my head, complete with skinned, bloody knees and a stunned shock that left me just lying there.  Jack came running back to lick my face, and I managed to get us both inside so I could lay down to rest.

As the night went on, I just tossed around in bed, my head hurting more and more.  I got up twice to throw up.  By morning there was no question of trying to get to work and by 10am I couldn’t take the pain and puking anymore.  M came and brought me to the ER where I was given an IV-cocktail of anti-nausea meds,  morphine, and whatever they mean when they say “liquids.”   The morphine was magic, whisking the pain away like a cool liquid eraser.  A few hours later they released me with bandaged knees, a negative CAT scan, a prescription for Loritab, a bill for $100, and instructions telling me I had a concussion and should rest for the next couple days.  I didn’t need convincing.  Woozy and weak, I gladly climbed back into bed.

But I knew this would be a long and difficult weekend for Andy, what with Jonah once again aggressing so much that it’s an abnormality when he’s not hitting the window in the car, Houdini-ing himself out of whatever harness he’s in, knocking over the lamp, the fan, the end table, toys, a glass – whatever is in his path – and running at you to kick, bite, scratch, and swat.

His preferred method of getting me is by reaching out lightning-fast (usually when I am putting him in his car seat) to grab my face in one hand, his fingers splayed like a starfish, each nail digging into my skin and scratching hard unless/until I can get away.  Let’s just say my reflexes are growing faster.

I felt well enough by mid-Sunday afternoon to watch Jonah some.  About an hour before I’d arranged to pick him up, Andy called me.  “Can you help me?” he asked, Jonah wailing and screaming in the background.

“Just go get his wagon from the park,”  he told me when I asked what I could do.  So I drove to the house, parked in the driveway, and walked up the street until I got to the little park behind the school.  And there, on the grass next to a green fire hydrant, was the little red metal wagon my mom had gotten him for his first birthday.  I stood for a moment and just stared at it, picturing Jonah flipping out, imagining how Andy managed to get him home, and wondering how many neighbors are witnessing exactly what kind of freakish folk we are.

If I’d had my camera on me I would’ve taken a picture of the empty red wagon.  It felt strange to take its black handle in my hand and drag it back onto the pavement, along to the corner, and down the hill of the street to the driveway with no passenger, a racket of rattling and banging announcing further craziness abounds! – a metaphor for everything I am, and do, and feel lately.

How were the visits yesterday and today with Jonah, M, and me?  I think if you read my blog much, you know.  It was difficult.  Our options are limited.  But we did go to grandma’s twice and he did have some good times too, like here on the slip-and-slide she’d laid out on the lawn…

…but even when happy he asks to go on to the next thing – car ride?  swim pool?  daddy?  train? swim pool?   I’d give a lot to have a pool, our own pool, where we wouldn’t be yelled at if he jumped or ran, where there were no other little kids for him to hurt, where he could swim his little heart out.  But there is no such magic pool.  My friend H even invited us to her pool, but she has a 3-year old so that wouldn’t work.  And we’ve been told that, because of his behaviors, he can’t attend the normal summer camp program; for the first time he has to stay back at school with other kids who, for one reason or another, can’t go to camp.  And guess what they have up at the beautiful Altamont camp?  A big huge pool.  SIGH.

M and I try to devise different things to do with Jonah – an empty park to take him to, a new car ride route, a walk in the woods, the SUNY fountains maybe?  We don’t know.  After 3 and a half hours or so, I am gladly bringing him home to daddy.

Once again I pause to wonder at Andy’s mental and physical fortitude; his courage, determination, and patience.

He is stronger than I – always has been – and I am grateful he is the one caring for our precious, out-of-control, enigmatic puzzle of a son.  Please God get us placement for him somewhere soon – even as it rips at me – I feel like we’re losing him and they can bring him back.  I’m counting on it.

I’ll be not-unhappy to go back to work tomorrow, skinned knees and all.

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groundhog day

Posted in autism, behavior, grandma, tagged , , , , on May 8, 2011| 3 Comments »

Phil Connors:  Well, what if there is no tomorrow? There wasn’t one today.  ~ from the movie Groundhog Day

This Mother’s Day was an amalgam of a whole lot of days with Jonah Russell, all rolled into one.  M and I had him for four hours.  There was grandma, the woods, waterfall, peanut butter roll, trains, kicking, hitting the car window, requests for black soda and Burger King and Cranberry Guster.  Jonah even scratched me all to hell.  He’d requested mama to put him in his car seat, then he grabbed at my face and dug in tight with his little claws (time to cut his nails).  My resulting look was puffier, more painful, and bloodier than usual, and when I dropped him back home I was not sorry to go.

He’s on a new med again – Zyprexa, while continuing with the Risperdal.  It’s only been a couple of days but so far there isn’t any improvement.  As usual.  Round and round we go….one day mushing into the next, a routine of events that makes me so tired I could sleep for 100 years.

It’s another of those days when I will put up pictures instead of expressing useless self-pity.  My face will heal, and Jonah did have some happy times today, despite his on-again off-again agitation.

He’d said “bye bye mama” so I watched from the top of the hill.

Then I came down with him, slowly, as he was playing near & in the water…


…only to be scared off by splashes and a rock-toss.  I was far enough away to miss the rocks but not the splashes…

In the car he didn’t want his picture taken…

…then he did.

I hope there’s a tomorrow

tomorrow.

P.S.  I still don’t know the identity of the flower-sender.  My bet’s on a miracle right now, ’cause that’s the most fun.

P.P.S. If you click on that box on the right hand side that says “We’re on the Fence” it will mean that I get one “like” and might get more readers.  Click only if you want to!

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easter ham & humble pie

Posted in autism, behavior, grandma, trains, Uncategorized, tagged , on April 24, 2011| 5 Comments »

I will not remember today as Easter so much as the last day of Jonah’s vacation.  Tomorrow he’ll probably be a hellion at school, but he wasn’t so bad this week, as long as it must have seemed for Andy.  Jonah adores his daddy, after all, and when he’s home on break his routine is filled with no-pressure stuff like car ride and grandma and peanut butter roll.

Besides, Easter doesn’t feel much like Easter this year.  My mom, God bless her, made a big ham dinner last night and separated it all into Tupperware and packages, some for Andy and Jonah and some for M and me.  Today when M and I watched Jonah, we saw the train and stopped at grandma’s to visit and pick up our share of her Easter feast.

There’s no sitting down and eating it, you understand, without thrown food and overturned dishes, splashed drinks and a constant Jonah-vigil not worth attempting anymore.  Jonah showed little interest in the Easter basket grandma filled with bubbles and chocolate, jelly beans and spinning tops, running instead up the stairs, down the stairs, and up again into the spare room where he jumped on the bed screeching.

Then he wanted grandma to go for a ride with us.  When we’d buckled him into his harness, his beloved grandma seated next to him, he decided:  bye bye grandma.  You want to go bye-bye with grandma, or you want grandma to go bye-bye?  We didn’t know.  We never know.  He changes his mind before we can puzzle it out:  Grandma come on car ride, he said.  So we headed off for a tour of Latham and Loudonville but only got maybe 1/2 mile down the road before he pronounced:  all done grandma.  So we turned around, drove back, and dropped my mother off.  I ran inside to get Jonah’s basket and our dinner, and we left.

M and Jonah and I ended up at the Rensselaerville Falls, as usual; it is much warmer now and the snow has melted in all but the most shadowy pockets of the forest.  As usual Jonah ran way ahead of us and only wanted to stay a short while; even he understands it is still too cold to walk down to the water and wade.

This morning my friend texted me a picture of her little 3-year-old boy, seated on the couch with two baskets, a big smile on his face, the message reading:  Happy Easter! 

It’s the kind of thing you’d send to a bunch of people in your address book.  I stared at the picture of her sweet little boy, his huge smile — the Easter Bunny came!   I texted Happy Easter back to her and put the phone down, wondering:  What is it like to raise a neurotypical child?

I’m sure it’s actually harder to dress your kid(s) up, get to church and the family gathering, then come home exhausted with the kid(s) all hopped up on candy.   Hell, I ate half Jonah’s candy myself without him ever knowing or caring, and the only place we had to go was on a car ride to the woods to watch a waterfall…so we had an Earth-Day Easter…

I took a lot of pictures today, as you can see.  I also made some necklaces and put together a care package for someone.  I like to imagine the surprise of getting a box of fun things out of nowhere and for no reason at all. 

Guster has this video I love and play whenever I start to lose my faith in humanity, when I feel my hope waning.  It always makes me feel better.  I want to be a part of things that make people happier, even if it’s just one person at a time.

Anyway, after M and I ate our homemade dinner, I polished off a piece of J.S. Watkins cheesecake my mom had procured, then a healthy slice of humble pie as well.  Ah, all the complaints I spew.  And how small my little life really is.

Easter was delicious.

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hold it

Posted in autism, behavior, doctor, grandma, placement, tagged on March 22, 2011| 4 Comments »

Hold it. This wasn’t the way it was supposed to
pan out, we both flattened beneath a spinning situation
ironed hot, scorched and out of orbit.

Am I dreaming first your stay, then mine –
clay-making, group, meal-lines like college, the
potent connections made in all those suffering days,
the way the womb became a mother-cushion?

Hold it.

Hold on. This is what I tell you. I see you suffer,
breathe, clutch, push time along to sleep, placing
facts upon a high shelf where they can’t be reached
without standing on the steps.

So stay seated, both
hands inside the vehicle, a ride dizzy but hopefully quick.

Hold on.

—–

There is no normalcy in any day, in anything Andy does, in anything surrounding Jonah, in anything at all.  Through the inconceivable notion of placing Jonah comes an urgency to place him – a sense of time ticking, of there being only so long we can collectively do this thing, keep going, keep everyone safe, keep holding it together, keep hanging on.

The doctor appointment yesterday was awful.  It didn’t start out that way.  Andy picked me up from work and we collected Jonah from school without incident, but on the ride to Clifton Park we passed the exit where grandma lives and Jonah started to ask for grandma and white soda over and over with increasing urgency.  We told him yes, Jonah; later, boo, and ignored it when he hit the back window with his palm. 

Andy dropped me off first to see if the doc was on schedule – they said he was, so Andy and Jonah followed shortly afterwards, walking in just as the nurse was calling his name.  First he was okay; the nurse put the blood pressure cuff on and Jonah said arm squeezy – he knows the deal with that – then she asked us to get Jonah undressed.  We did, and he paced the room in his pull-up, lifting the blinds, walking back to the corner by the door, walking back to the blinds, saying all done at intervals – but then he slowly started to fall apart. 

By the time Dr. Pascual came in and wanted Jonah to lie down so he could listen to his heart and belly, we had to hold Jonah down on the table and he cried, frightened, ramping up for aggression-time.  Then Andy got Jonah dressed, putting himself between Jonah and me so I wouldn’t get hit by any of Jonah’s swats and kicks. 

I stayed behind to talk to the doc for a few minutes.  There wasn’t much to say; the doc saw an obvious need for placement and told me he thought Jonah would really benefit and be happier with 24-hour care. 

Small consolation.  But the truth is that what used to be small consolation is now something we cling to, and hope for, and want as soon as possible.  Even with the oxymoronic torment it brings us. 

So I walk out to the parking lot and I see the SUV’s back hatch is swung open, and I get in the passenger seat and there’s Andy holding Jonah in the backseat, and Jonah’s undressed from the waist down.  I guess he tried to kick a baby in the waiting room on the way out and then Andy half-carried him to the car, Jonah fighting him all the way, and when they got to the car Jonah took off his shoes and pants and pull-ups off, attacking Andy the whole time.  I saw Andy’s hands were spotted with blood, probably from being bitten and scratched. 

I didn’t ask.

I managed to help Andy get Jonah’s pull-up and sweatpants back on him, then we latched him into his harness and secured it to the seat, retrieved his bag from the top of the car, slammed the hatch, and I moved into the driver’s seat to drive us the hell out of there.

Jonah was quiet on the way back.  Andy and I were quiet too.  I asked him briefly what happened, he told me, then we too fell into silence. 

Silence like a door that closes, latched, leaving us in the dark, unseeing, feeling our way along in the black.

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nobody wins

Posted in autism, behavior, grandma, placement, Uncategorized, tagged , , , , on February 15, 2011| 3 Comments »

Yesterday Jonah had another appointment at the child psychiatrist.  Andy and I tried to time it so I’d get there first to check him in, meet the social worker from Wildwood, and then Andy and Jonah would meet us there so Jonah wouldn’t have to wait (thus hopefully decreasing the chances of him flipping out).  It worked out pretty well.  Jonah did a very good job of staying relatively calm for the small amount of time the doc and a med student observed him- then Jonah and Andy left and I stayed behind with the social worker to talk to the doc. 

Doc wanted to change Jonah’s meds a bit – increase the risperdal by a little and remove the atavan PRN (as needed) and replace it with klonopin PRN.  When Andy and Jonah left, he wrote the scripts up and I explained that we were going on a tour of Tradewinds on Thursday.  Then I asked a “what if” question I’d been thinking about:

“What if we find the magical mix of meds and the aggression goes away?  Do we still place him?  Does he still need residential care?  Do you ever hit upon the right cocktail of meds and fix the problem?”

“Occasionally,” he answered, “but I wouldn’t get your hopes up.  Usually we can mitigate the symptoms for a short time.  But the decision is up to you.  Remember, the choice is yours.  If you place him, you can always take him back home.” 

Sigh.

I don’t like this kind of decision-making.  This ‘playing around’ with the course of my child’s whole life.  When I dropped the scripts off at the pharmacy and stopped at the house, I talked to Andy about this.

“He definitely needs to be placed,” Andy asserted. “I can’t even handle him anymore.”  At least he isn’t arguing with me – we are on the same page about doing the best for our son.  But how can we really know what that is?

Jonah’s log book from school reads like a roller coaster.  On Monday he had 6 aggressions.  On Tuesday he had only one.  Wednesday he scratched a peer.  Thursday he threw a toy at a teacher.  Friday he tried to throw a computer. 

I hate the inscrutability of it all. 

I hate the way my mother is falling apart over this; she doesn’t eat right, isn’t sleeping, and some days she just cries all the time.  She refuses my help to find her a therapist or get on some medication.  I can’t help her accept this and I feel like I have become her scapegoat and I hate that too.

Both she and Andy have indicated that they want to pack up and move to wherever Jonah is placed, when it happens.  I don’t know if they just said that, if they really meant it, but I must stay here.  I have a good job that pays well – much more than I could ever make in Oneonta or Utica.  I carry the health insurance for all of us.  I am the one who has the means to set up a special needs trust for our son, to draft a will, to set up life insurance, to afford a mediator for our separation, to maintain a home Jonah can come back to if and when he is able to do so. 

It all makes me feel abandoned.  I lose my child, my mother, my child’s father. 

I lose.  (Not that there are any winners).

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taking it all away

Posted in autism, behavior, grandma, placement, trains, Uncategorized, Wildwood, tagged , , , , , , on February 8, 2011| 2 Comments »

Oh, the irony.

I write a monthly column (also named Normal is a Dryer Setting) for the Capital District Parent Pages, which is distributed for free on the first of the month at several locations in and around Albany.  This means I have to write the columns nearly a month ahead of time.  My column for the February issue was devoted exclusively to how much Jonah loves one of the big malls here in Albany and how he has developed a specific route through the halls and stores.  For those of you who don’t read the Parent Pages, here it is:

Normal is a Dryer Setting – February 2011

Jonah’s been asking for “mall” a lot lately.  As I’ve mentioned before, we used to visit a lifeless mall with the singular purpose of escalator riding.  But now his version of “going to the mall” involves a different, specific shopping center and a highly specialized course that cannot under any circumstances be altered in even the slightest way. 

I think he has lain awake nights craftily planning this path, for it is a winding trail through stores and hallways that’s as random as it is precise.  Yes, the escalator is still a huge piece of the puzzle.  However, unlike most children for whom a toy or music store is the desired goal, Jonah’s all about the expedition.  In his little Zen-like brain of autism, the journey is the destination.  The upswing is that he doesn’t want anything that costs money; the downside is that if I want something that costs money, I’m out of luck, for there is no stopping – it’s a one-way express trip paced by Jonah’s caprice.

The trip to this mall means we must park near the side of a certain magnet store and go in through an exact entrance.  We have to pass certain racks of clothing so he can reach out and touch the soft sweaters and scarves, then walk behind a checkout station, around a store mannequin, and make a sharp left toward the venerated escalator.  Up we go, Jonah’s attention divided between the store lights and the sensory input from the movement of the ride;  at no point does he look down or pay any attention to where he is in the progression of the ride, yet he never fails to step off the escalator with perfect timing.  At the top is a vast array of huge-screen TVs, something I always expect to capture his attention, but no – he is already seeking the down escalator, leading us with confidence toward its return trip to the first floor.

Here we travel along another wall and enter the mall itself, where he skirts closely by a play area, mildly interested but not curious enough to enter, for there is another escalator at hand and that’s far more compelling.  We journey once again to the second floor, and here Jonah travels along the railing, up on its little step, holding onto it and sliding his hand along its smoothness.  God forbid someone is leaning on the railing or has paused to rest; there was a time he considered people mere obstacles to try to walk right through, but we’ve taught him to “go around,” so now he’ll let go of the railing just long enough to skirt by the bystander and grab hold of it again on the other side. 

After this, we reach his favorite store where, to reach its escalator, we have to evade such obstacles as cosmetics counters and perfume displays.  At the top, the path to the down escalator is tricky, involving an ungainly passageway of pushing through racks of coats, moving around men’s suits, and a risky bull-in-a-china-shop course past an exhibit of crystal wine glasses and dinnerware.  Unfortunately, and for some reason known only to Jonah, the intricate trail from this particular up escalator to down escalator is the one he desires to tour repeatedly, so we usually allow him three or four trips before store clerks begin to regard us suspiciously and we declare an end to this particular bit of fun.

Having survived the most challenging portion of our route, the rest is comparatively easy.  One more trip up the mall’s main escalator leads us right past a large toy store (something most kids would be unable to resist) and into another large magnet store – this one, though, possessing not one but two sets of escalators, allowing for three full floors of up and down excitement.  We inevitably exit the store on the second floor, where Jonah leads us directly past all the previously enjoyed meanderings, down one last escalator, and back into the original store, lovingly giving the same sweaters and scarves one last caress before heading unswervingly back to the original door where we entered perhaps 45 minutes ago.

It is a journey fraught with meaninglessness, but no more so, I think to myself, than your average shopping trip.  So off we go, having done nothing more than seeing the mall through Jonah’s unique eyes…which turns out to be doing quite a bit, if you think about it, after all.

I share this particular column for a reason.  There’s not a whole lot Andy or I can do with Jonah anymore that he enjoys, especially in winter (unless you include sledding, and even that has its bad days, like last time Andy took Jonah and he only went down the hill one time because some people with an unleashed dog were there, and the dog scared Jonah so he wanted to leave).  Jonah’s list of requests for “outside” activities have been narrowed down to car rides/train, the grocery store, going to see grandma, and the mall.  That’s about it. 

And now the activities have been further limited. 

Sunday afternoon, after I came over to play with Jonah for a while, Andy took him to the mall.  Nothing seemed different and Jonah was enjoying his route as usual, until they approached the children’s play area — and like a striking snake Jonah shot away from Andy and launched himself at a toddler, attacking for no reason, going right for the kid’s face.  Andy had no time to stop him; he could only intervene.  Thankfully the parents were calm and relatively understanding, saying their child wasn’t hurt, while Andy had no chance to even explain because he was busy wrestling Jonah to the ground and restraining him, then doing an about-face and getting the hell out of the mall as fast as he could.

When I stopped by yesterday after work, Jonah was just getting out of time in his room for attacking Andy. 

“We can’t take him to public places anymore,” Andy said to me with a look of defeat that hasn’t left his face in months.  I asked if there was anything I could do, but really all I can do is visit my boy as much as possible, play with him “downstairs” (our heated basement which he requests quite a bit), and soak up the time I have left to see him at a moment’s notice before he lives full time two hours or so away.

The child psychiatrist’s appointment we’d scheduled for the 2nd of February was canceled (due to that “huge storm” that never really materialized), so we’re going back this coming Monday to see if we can adjust his meds or whatever.  Then Andy and I have an appointment to tour Tradewinds in Rome on the 17th – if we like it, we’ll bring Jonah back so they can assess him.  Still waiting to hear from Springbrook. 

Last week we toured a respite home (Heldeberg House) on Western Avenue in Guilderland – they provide between 30 and 40 days a year for day or overnight care – but Andy has so little confidence in their ability to handle Jonah that we’re not even going to try it. 

The car, too, has become increasingly unsafe because Jonah can (relatively easily) unhook himself from that expensive 5-point harness I bought.  We’re looking into buying the harness that he uses everyday on the bus.  We need something he can’t get out of before he hurts one of us or makes us crash the damn car.

If I were the type of person who believed in a God with human-like attributes, a God who gives and takes and picks and chooses who to mess with, I’d yell at Him/Her:  What the living hell?  Why do you have to take everything away from our little boy?  Why do you have to keep piling on the shit?   When will we have had enough?

But I’m not that type.  I think Divinity is uncomprehensible and inconceivable by mere humans, and I like it better that way.  It’s the only way I can continue to believe in any kind of Divinity at all.  Not to mention there are hundreds of thousands of people on this planet in worse shape than we are.

And yet I feel the resentment rise again, the familiar angry frustration, the envy, the anguish. 

Fuck.

I am, at least, thankful that Jonah has a wonderful father who takes care of him with unwavering strength, determination, love, and patience. 

Silver linings and all that.  Thank you, Andy.

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grandma’s, where sugarpuss lives & baths abound

Posted in autism, behavior, grandma, potty training, trains, tagged , , , , on January 31, 2011| Leave a Comment »

Thanks to everyone who left such valuable comments on garnering the information I want about residential facilities. I really appreciate it!

On Saturday I came over to the house in the morning to spend some time with Jonah Russell and give Andy a bit of a break.  At first Andy and I took him places together:  the usual litany of train and mall and grandma’s house, though Jonah no longer really cares whether the train comes or not (and sometimes declares “all done train” as soon as it does come), and Jonah has changed up the route through the mall (oftentimes not even making it all the way to the other end before deciding to turn around and start back, and – most surprisingly – declaring “no coin” at the wonderful brand-spanking new coin-funnel spin-down-the-drain structure; three months ago he would have begged for every coin on my person to throw down to whatever-good-cause)…

…but he never wavers from his desire to see grandma.  Our cat Sugarpuss now lives at grandma’s house because Jonah was attacking her, picking her up by her fur and once trying to grab her collar, nearly choking her. 

Sweet little sugarpuss, who we rescued from a back Albany alley in 1999 and who wants nothing more than to love and be loved, purring and meowing and mushing her face into your face.  My mom likes to read at night and Sugarpuss actually crams herself between my mom and her book, then tries to sleep on her head.  My mom’s other cat, Bootsie, doesn’t seem to mind Sugarpuss so much but Bootsie’s definitely been displaced somewhat.  When Jonah is at her house we watch him extra carefully around the cats, lest he produce his best imitation of a hiss and chase them.

One thing that’s definitely increased by leaps and bounds is the amount of baths Jonah wants every day.  We can bathe him in our house and arrive at grandma’s with his hair barely dry, yet he’ll enter her house, run up the stairs, and immediately declare his desire:  bath!

It is no hyperbole to tell you some days he takes 6-10 baths a day.  And here we have certain rules and games and necessities as well – usually only one of us can be sitting in there with him, and sometimes we are all banned:  no grandma!  no daddy!  no mama! or, if he decides he wants one of us, hey daddy?! 

Then there are the bubbles.  There must be bubbles, lots of them, and water (pretty hot water)  as far up to the top of the tub as we’ll let him have it – so he can go underwater completely, take mouthfuls of soapy water and spit them in perfect whale-spouts into the air, and cavort about, making waves, always requiring a towel or two on the floor.

He loves the colorful Spongebob Squarepants container the bubbles come in, but they’re expensive so my mom secretly refills the bottle with something else every time he empties the whole damn thing into the tub, pouring water from the bottle to the cap and from the cap onto his head and then requesting various cups and containers into which he can continue the pouring extravanganza.

Sometimes he’ll stay in there for an hour, sometimes 5 minutes, and there’s no telling which it’ll be.  All done bath, he’ll declare, and then one of us has to hurry to grab up the towel while he runs into my mom’s room and jumps all over the bed, naked and dripping as we try to catch him.

Jump!  Jump!  ‘Errybody’ jump!  he sings and laughs, bouncing from one spot to the next like a jumping bean, until I catch him up in the towel and dry him as vigorously and quickly as possible before he can escape.  Once dressed he stomps Olympic-quick down the steps to ask grandma for ‘tune-fish samwich’ and black soda, which we usually let him have because he’s getting much better at going pee and poopy on the potty.

He did have an incident/attack where he lightning-fast shot out at his grandma, but Andy and I got to him before he did her any harm and then held him down on the living room floor until he calmed down again and we could go.

When we got back home on Saturday I gave Andy a much-needed break by playing endless silly games with Jonah in the heated basement – catch the beanbag (what color is it?), roll the pretend shopping cart, put the slinky down the stairs, stack the blocks (what color are they?) chase each other around – up and down the stairs – around the craft table – that kind of thing. 

It was fun and I snatched him up and hugged him tight, my sweet little boo.  Yesterday I didn’t go over; I felt stuffy and sickly.  When I called Andy he told me that Jonah had taken his radiator cover off and threw it into the hallway at 4am, which scared the bejeezus out of Andy, but I guess there was no fight or agression afterwards; Jonah just felt like kicking up the nighttime scene a notch, I guess. 

We’ll see how he does this week.  Another psychiatrist appointment on Wednesday for some further med adjustment, maybe, and I’m supposed to be hearing from Springbrook soon, once they get Jonah’s paperwork. 

I sure hope they have bathtubs.

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