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Archive for the ‘trains’ Category

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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ostrich mom & forest boy

Posted in Anderson School, autism, behavior, doctor, placement, Springbrook, Tradewinds, trains, Uncategorized, Wildwood, tagged , , , , , , , on April 30, 2011| 2 Comments »

Sometimes it amazes me how much happens in our lives between blog posts.  On Friday morning, one of the specialists from Wildwood School called me at work and she asked for the status of Jonah’s admission into Springbrook and Tradewinds.  It’s not great news.  Tradewinds (in Utica) has accepted him but they’re full and we have to wait indefinitely for a spot for Jonah.  Springbrook may or may not take Jonah, depending on whether they can squeeze him in among the kids they’re bringing back to NY from out of state.

Then she told me the functional behavioral assessments aren’t working – that almost always they can determine the cause/antecedent for a child’s behaviors – at which time they can then implement a plan, which almost always works, at least to some degree.  But with Jonah, the functional assessments come out different every time.  Avoidance, say, or attention-seeking.  And oftentimes, nothing at all.  Even during preferred activities he will sometimes aggress, lightning-quick and without any warning whatsoever.

She told me Jonah’s quality of education is now practically gone; they’re just managing him at this point.  I realized suddenly that, in a sense, I’ve been an ostrich mom, hanging on to the ‘promised placement’ I used to fear and now long for, burying my head in the sand until I can entrust Jonah to the hands of other people – professionals…experts…specialists who will help our boo get better…people who will unburden me from everything I don’t feel like I can take anymore.  With that realization came some sort of a second wind…an epiphany that no one will help us the way we’ll help ourselves, though Wildwood sure is trying.  They are kind and encouraging, diplomatic and sensitive.

They’re helping me look into other options – other residential places they’ve seen and are very happy with…the Anderson Center, they say, in Staatsburg NY, near Kingston, though we once scheduled a tour there and canceled it, back when I thought I could be picky about schools and we wanted something closer.  Wildwood also suggested ruling out physical causes for his aggression – something we’d suspected but weren’t sure if we should pursue because of the trauma all the doctors and travel and tests would cause for Jonah.  Was it worth it, we wondered, when the so-much-more likely cause was simply a severe symptom of autism?  Now it looks like something else really is going on – physically, or neurologically, or God-knows-what.   I know it’s time to do more.

So I approached my boss all a-wreck, explained the situation briefly, and asked if I could take an hour or two to make some phone calls, please.   She was very understanding and said of course.   I went back upstairs, closed my office door, cried, cursed, swallowed half an extra dose of klonopin, and breathed in and out, in and out, in and out…slowly getting my shit together.

First I left a message at The Anderson School to schedule a tour…then I called a parent or two, for advice and guidance.  I left a message with a doctor here in Albany who (one parent told me) can run a full round of blood and genetic tests.  I called Boston Children’s Hospital to make an appointment.  I called Jonah’s pediatrician to order a sedative so I can get him there.  I called a homeopath.  I went online and ordered fish oil chewables.  I researched PANDA and gluten/casein diets – the former I’d never ever heard of, the latter was something we’d always dismissed for Jonah, since it never seemed he had any stomach issues, really, and we didn’t think there was much more than anecdotal evidence to support trying it.  Also, since Jonah’s recently been clinically diagnosed with juvenile idiopathic arthritis, I called the Arthritis Foundation as well, told my story, and was promised they’d get back to me soon.

Now momma-ostrich is awake and determined, shaking off the sand.  We’re gonna figure some shit out no matter what I have to do.

That was Friday.

Today M and I picked up Jonah to give Andy a break.  It was a beautiful springtime day in the 60s with sunshine, high pulled-cotton clouds, and that wonderful new-season-scent that pervades everything.   We went to the woods behind Russell Road park and Jonah practically skipped down the path, smiling and happy.

He loves the woods, is gleeful in the forest.   He was so good for us.

We let him slide in the dirt and toss handfuls of pebbles, hug birch trunks and throw twigs around.  (He was unable to hurt anyone, even if he’d wanted to, though he was as far from aggressing as I’ve seen him in a while).  Unencumbered by rules and regulations, alive and free to do as he pleased, he scampered – digging in the leaves and earth, running down the path ahead of us, laughing… again my sweet, fun, awesome little boy.

When he’d had enough of this particular forest, he requested train, donut, and waterfall, all his favorites and all within reason and reach.  After a speeding train and a third of a donut, which he politely handed back to us:  no donut – we drove on to the falls.  For the first time this year we walked down to the water, though he didn’t ask to go in.  Again he cavorted, explored, told me bye bye – and as I walked 10 feet or so away, he stood watching and listening to the falls, at home in his little zen-place.

In the midst of the storm of our lives, it was a pretty good hurricane eye.

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rewrite

Posted in autism, trains, Uncategorized, tagged , on April 27, 2011| 4 Comments »

“I’m working on my rewrite, that’s right
I’m gonna change the ending
Gonna throw away my title
And toss it in the trash
Every minute after midnight
All the time I’m spending
Is just for working on my rewrite, that’s right
I’m gonna turn it into cash

I’ll eliminate the pages
Where the father has a breakdown
And he has to leave the family
But he really meant no harm
Gonna substitute a car chase
And a race across the rooftops
When the father saves the children
And he holds them in his arms

And I say help me, help me, help me, help me
Thank you!
I’d no idea
That you were there
When I said, help me, help me, help me, help me
Thank you, for listening to my prayer…”

© 2010 Words and Music by Paul Simon

This has been a tough day.  I felt anguished and guilty, helpless…I wanted to leave.

But eventually I dried my stupid tears, took pictures of beautiful things, and kissed my little boy (with his incredibly dirty face and feet) before returning to the basement apartment to watch Match Game on DVR.

At least my new Paul Simon CD came in the mail today;  Paul’s one of my favorites (yes, I do love other bands and artists besides Guster)… I love his new music and was cranking it in the car today.  I tried to put it on when Jonah was in the back of the car but after 3 seconds or so he cried:  Cranberry Guster?  So I changed the CD and we drove to see the train, which never came.

“dir-fee!  dir-fee!” he called over & over until I realized he was saying “dirty feet.”  He’d been running around the yard playing barefoot when I arrived after work.

So to make up for the coherent post I just don’t have it in me to write, here are some pictures:

train comin?

in the background, buddha looks on at the near-blooming tulip & stonepile

magnolias blooming outside our kitchen window at work

dirty feet

i love cushy yellow ball

we’re forever crossing bridges.

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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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trade offs

Posted in autism, behavior, placement, trains, Uncategorized, tagged , , on April 6, 2011| 6 Comments »

Some of our boy is back, now that we’ve got Jonah taking the original dose of Risperdal again, for fear of attempting yet another med or dosage that’ll throw him all out of whack.  It’s a strange thing to try this and that, feeling like you’re guinea-pigging your child, especially since you used to think you were anti-meds.  Desperation will bring you places you thought you’d never see.

After work I often go the house, and Andy and Jonah and I will take a ride to go see train, which Jonah enjoys again and seems to get excited about, but if a train takes too long to come along or we take a right when he wanted to go left, we pay for it in kicks and thrown shoes, screams and thrashing and incomprehensible demands.   It’s a trade off; we can have some of his personality and smiles back but the aggressions still aren’t mitigated very well.

But ah, the smiles…

They’re sweet, the smiles, and damn it he’s in there, the kid who swims and climbs and pours wood chips down the slide.  It’s great when the cloud of aggression parts and you see him smiling, playing, singing, joyful.  Even just calm, eating or watching train-on-TV.

He’s my precious little boy, and I want to snatch him up and plant kisses all over him, have him open his arms wide and hug me, say I love you, mama —  hold him close, snuggle into him on the couch, sniff deep into his hair and simply absorb the presence of him.

Springbrook hasn’t contacted us yet, so we’re waiting.  From Thursday through Sunday I’ve got a lot to do during long days at our annual spring convention at work, so I’ll be back after that’s all over.  It’s fun but exhausting, and I’m presenting a session this year so I’m a little bit nervous.

Please send Andy some “you can do it” energy, if you will.  My mom will try to help him, or at least feed both he and Jonah, and my cousin D will hopefully help too – but trust me it won’t be an easy weekend for him and I hope Jonah doesn’t give him a hard time.

Once in a while Andy’s got to catch a break, right?

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the accumulation

Posted in autism, behavior, trains, Wildwood, tagged , , , on March 23, 2011| 4 Comments »

Here’s the thing.

It’s not the one day of attacks, or the one incident of aggression; it’s the accumulation of day after day after day of the same thing, the same attempts to quell the behaviors that end in failure after falure, the same silence that falls on a situation we’re in – a cage, prison walls, something inescapable that has now become our “normal.”

Yesterday at school Jonah went to the safe room three times, and all three times he pooped and smeared it all over the walls and himself.  They cleaned him up as best they could while he fought them, then he cried and cried, and finally tried to run out of the building (a new trick for him).  The undoubtedly underpaid workers at Wildwood are angels and saints.   

Here’s one of his speech teachers, teaching Jonah about emotions and asking him to mock her facial expressions while they watch themselves in a mirror.  This is from June of 2010 – they are doing “excited” – I love this picture:

When I got out of work I went straight to the house and Jonah wanted a car ride.  As expensive as gas is, it is worth it to us when he is good on the rides (we have no idea why he was such a hellion in school and then was so much better for us at home)… Andy sat in the passenger seat and we drove over to the Voorheeesville Stewarts to get Jonah a peanut butter roll and visit the train tracks where we saw two trains, which this time neither excited nor annoyed him.  He was good, so we kept riding.  And riding.  We’d ride around forever if it meant our boy would be calm, and happy, sucking his thumb and looking around contentedly.  This kind of silence is welcome; we let Guster play on the CD player and drive along without speaking much.

We’d give anything to take away whatever anxiety or fear or confusion or pain that’s inside him.  It’s the accumulation of days, now, that piles on, swaying and unbalanced – and apt to fall at any time.

Thank you to my commenters, who always encourage and support, inform and try to help.  I appreciate you all more than you know!

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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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intercepting the prez

Posted in autism, behavior, placement, trains, Wildwood, tagged , , on January 21, 2011| 1 Comment »

President Obama is coming to our area today, weather permitting (snowing again).  Aside from the fact that I’ve always wanted to see Air Force One land or take off, I half want to intercept him somehow — I even have visions of getting Michelle’s attention (I don’t even know if she’s going to be with him) — tugging on her skirt like a little girl, begging her to help all the frustrated parents who can’t get help, or must wait months for help for their disabled kids. 

Realistically of course I’d get nowhere near either of them, but I can write and I may just send off a couple of letters to each of them – to everyone I can think of – in a desperate, articulate plea to fix this shitty system.

Spoke at length to a mom of twins yesterday – one of the twins attends Widwood and the other is placed in one of the residential education schools we’re looking into.  We spoke at length about how she came to her decision to send him there, and how she liked the place very much.  She also confirmed my fears about one of the other places we’d been considering (I wish I could name names here but I’m kind of afraid of being sued for libel – not that I’m anyone important or particularly credible, but you never know – the last thing I need is a fucking lawsuit because I said something negative about a particular institution)…

Anyway, this mother said my situation sounded a lot like hers – though her son was placed when he was a little bit older, after smashing through several windows and walls and had become very strong and almost unstoppable in his aggressions.  She understood my frustrations and said she was willing to talk to me anytime.  From what she told me, I now am seriously considering this place where her son resides; evidently it’s set up in a series of ranch-like homes, has a Temple Grandin-designed hug machine, an indoor pool (which Jonah would LOVE), and has private rooms for students who need them.  I definitely want to set up a tour, though they won’t have rooms until spring at least. 

I’m grateful to be able to speak to parents in the same situations as ours (or in situations even worse than ours) – it only confirms my desire and conviction to effect some sort of change in the system, despite my miniscule chances of doing so.  In the meantime I will be researching, collecting information about HIPAA and other laws, speaking with autism organizations, learning and digging and thinking.

Yesterday Andy kindly picked me up from work; my car had gotten stuck spinning in the snow that morning, and I’d gotten a ride in but had no ride home.  Jonah of course was in the car and had requested “train,” so we headed over to the tracks in Voorheesville.  We had perfect timing, arriving just as the red lights began flashing and the striped gates were lowering.  I turned around in my seat and said “Yay, Jonah!  Train!” 

After a few train cars had passed, he looked at me with this completely bland expression and announced “all done train!” 

I guess we’ve entered a new era of train apathy.  Fickle kid.

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hero, interrupted

Posted in autism, behavior, escalators, trains, tagged , , , , on January 1, 2011| 1 Comment »

Happy 1-1-11 everyone!  (I love when dates line up in cool ways like that).

So yesterday Andy was giving Jonah his morning ride to the train and then Johan wanted more car ride, so they’re going down New Scotland Ave and right in front of him this big pickup truck veers off the road and smashes into a giant oak tree.  Just keep going, Andy thought, worried that if he stopped the car Jonah would freak out.  Just call 911…someone else will stop. But like the nice guy he is, he just couldn’t do it.  So he pulls a little past the truck and runs back to see what’s going on.  Turns out the guy driving must have had a heart attack or a seizure or something; he’s about 50 or so, Andy thinks, and all slumped over with his eyes rolled back in his head, only the whites showing.  Andy calls 911 and tells them where the accident is, and a teenager runs across the street to see what’s going on; Andy hears the driver breathing but his breaths are all raggedy and raspy.  “If he stops breathing we have to get him out of the truck,” Andy tells the kid, “and I’ll give him CPR.”

By this point another car has stopped and Andy asks one of the two people if they can go check on Jonah in the car.  But there’s some confusion as to which car is Andy’s, and now the driver’s all slumped over into Andy, moaning and trying to move.  “Just stay still,” Andy tells him, and the firetruck arrives.  Andy gives a quick description to the emergency personnel of what happened and how the driver is doing, and then he runs quickly back to the car.

Jonah’s gotten himself out of his car restraint completely and is wreaking havoc in the car – banging Andy’s coffee cup on the console, screaming and kicking.  He tore the knob off the radio and is going ape-shit.  So Andy opens the door and Jonah and he are struggling in the car and then out on the street, just 50 yards or so ahead of the car accident scene.   By this time Jonah’s got Andy’s hands all scratched and bleeding and he’s bitten one of Andy’s hands twice, pretty bad.  Now Andy’s worried that someone’s going to notice his scene and wonder what the hell he’s doing to his kid, so he wrestles Jonah back into the car restraint and hightails it outta there.

He decides next time he’ll just call 911, at least if Jonah’s in the car.  I think this makes the 5th or 6th time one of us has dialed 911 since the August day when Jonah put his leg through his bedroom window.  Too much 911 for us, man.  Let’s have a 911-free 2011.  Please.

All in all, though, Jonah’s been doing really well.  So well that we’re reconsidering placement and hoping he’ll get nicely back into the school routine come Monday.  Jonah probably just got all freaked out being left alone in the car for the 7 or 8 minutes Andy was gone, so Andy didn’t take any punitive action.  He called me and we ended up taking Jonah to Colonie Center, where he could go through his highly customized routine of visiting stores he likes and their escalators.  I tried to stop by LensCrafters to say hello to my peep Sue, but she was busy with a customer.  She saw me, though, and we waved to each other, and then Jonah pulled the three of us back into his preferred mall route.  He does not enjoy varying from this route and we sure as hell weren’t going to press the point.  Not this day.

Can the strange, unusual, stressful, crazy events please stop haunting us this year?

We’d really appreciate it!!!

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