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Archive for the ‘The Anderson School for Autism’ Category

residential educational facility

Posted in Anderson School, autism, behavior, doctor, placement, The Anderson School for Autism, Uncategorized, tagged on December 30, 2011| 4 Comments »

“Jonah lives at a residential educational facility for kids with autism” is how I say it.

Innocent conversation-starter questions at networking events or out in this bad, bad world*:  So Jonah is 9?  Is he in 3rd or4th grade?

I almost always tell the truth, and it sounds like a carefully phrased script constructed to confuse with alliterative, technical-sounding words that hopefully distract the listener while I try to usher the conversation elsewhere. 

Jonah’s at a residential educational facility for kids with autism. 

I’m not trying to be politically correct here, though of course it must seem it.  It’s just that any alternative phrasing feels awful. “Jonah lives an hour and a half away from me, cared for by strangers I have no choice but to trust because his kind of autism comes with behaviors so severe it was unsafe for everybody to keep him at home.”

What else could I say?  “My son’s at a school for kids with autism,” I guess would be okay, but it lacks that alliterative technical-sounding distraction technique and, instead, seems to always invite more questions.

Luckily most folks then let me take us on to “so you went to school for marketing?”

And then, later, I allow myself to wonder what Jonah would be like if he were in 3rd or 4th grade, just a regular kid at a regular school.  Would he still love the water, and celery, and tight hugs and car rides?  Would he be good at different things?  Would we go places and do things together?  Bake and hike and play games?  I get the feeling I’m over-romanticizing regular kids.  You get what you get.  And everybody gets their share of shit.  It’s just sometimes I feel like mine’s smeared all over me.

There are times I don’t talk about because I’m ashamed of them, the times when I forget.  It used to be for a minute, then an hour, then a day.  What I forget is how bad it was, how scared I was all the time, what despair and dread we lived with day after day after God-awful day.   I forget, and then I feel relief, and I tell myself that Jonah is well taken care of and in the best possible place, with his father just 5 minutes away.

I forget, and I am relieved, and I am ashamed.

If I were a born-to-be-a-mother-mother, one of those special people some folks say I am, I’d have found a way to keep him home with me, protected and loved.  No matter what I had to do, no matter how expensive.  No matter if I had to get a second job to pay for a 24-hour personal aide, an autism service dog, a kick-ass nutritionist.  A behavior analyst – Harvard valedictorian, class of 1988.  Some Superdoc who will fix all his violent behavior.

Not everyone should have kids.  It shouldn’t be an expected order of things:  High school.  Then college.  Job.  Engagement.  Marriage.  Buy house.  Have 2.5 kids.  Work until you retire.  Wish you had something to do, wish you still felt important to the world.  I may not understand it fully but I feel it coming, all this being pushed off the planet by the next generation and the generation after that and the generation after that.  Everything starts to confuse you and technology feels exponentially rapid now.

So maybe I shouldn’t have had kids.  The truth is I just really, really wanted some unborn child to have Andy for his/her father.  Unfortunately I was also selfish enough not to realize it probably shouldn’t have been with someone like me.

I don’t mean to sound whiny or crazy.  UGH.  Should I post this mess?

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closer

Posted in Anderson School, autism, The Anderson School for Autism, Uncategorized, tagged , , , , , on December 5, 2011| 5 Comments »

My article for the next Capital District Parent Pages is due on the 10th and I haven’t written it yet.  Puts you right back in a school mind frame, with deadlines for essays.  Since I love to write it’s actually cool.  In college I used to amaze my fellow English majors by completing my essays the night they were assigned, though the professor had given us 2 weeks.  I never told anyone, but the thing is I wanted to write the essays.   (Plus there was the added benefit of getting it done when everyone else waited until the last minute).

Then I think further back, to high school, and I remember about Mr. Fleischer, and can’t stop thinking of Mr. Fleischer, and I say to myself he is gone, he is gone. 

After 4 years of chorus in high school, I sang in college chorus all 4 years as well.  And yet, God help me, I don’t even remember our college choral director’s name.  Of course that was 20 years ago, but still it underscores the impact of Mr. Fleischer on my life.  Every online moniker I’ve had has been winklett because it is the name he gave to me.  That choral director in college….he was pretty good, but that’s it.   Funny how I expected him to be more.   Mr. Fleischer set that bar very, very high.

Now that I am thinking of Mr. Fleischer, all these memories wash over me.  Like how I loved being in the chorus room and spent as much of my day in there as possible.  I even ate my lunch there; Mr. Fleischer never minded (unless we left a mess behind).

In the chorus room I could avoid people who made fun of me for being skinny.   The kids who hung out there were fun – even the cool ones.   There were these boys who formed a comedy routine/band:  The Four Neat Guys.  They were awesome.  I remember they did George of the Jungle….there’s more, on the tip of my memory.  I remember a kid who could recite the entire movie Monty Python & The Holy Grail.   But there weren’t any bullies.  It was a sanctuary.  I want to crawl back in.  I haven’t seen Mr. Fleischer in years, and yet I’m mad that he’s been taken away from me.

I’m mad about Jonah, too.   Mad at my helplessness.  Mad that I couldn’t raise him anymore.  Mad that I can’t smother him with kisses.  I think of the kid in that book The Curious Incident of the Dog in the Night-time and how he would only touch the tips of his fingers to his father’s – it was the only physical contact he could stand.  Andy gets frustrated with me when I get too close to Jonah right away – and I know he is right – but  I want to hold him, hug him, squeeze him tight.  I want to put out wings and cover him.

He’s an only child, now one of 8 kids in a family of rotating caregivers.  I want them to love him,  unconditionally, and that’s an unreasonable thing.  I can’t help wanting it.  I don’t care.  Some days I think this has all gone on too long now.  Some days it is all I can do not to drive there and snatch him away.  But I know I can’t take care of him either, and it would be doing him a terrible disservice.  I need this to be the case and I hate that it’s the case.

Most Saturdays he and I will sit in the back of his dad’s SUV and sing “Cranberry Guster” songs, and always after a while his eyes silently ask why, mama?  Then a few moments later, he begs me in his little-boy voice:  “home?”

Sometimes he asks it two or three times.

I think he is beginning to ask it out of habit and not so much as something he can actually hope to expect.

Here are some pictures I took of him this past Saturday:

my face against the window

beloved bath-time

swinging with his silly hat

gazing into the mirror:  jonah is closer than he appears…

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the two-person takedown

Posted in Anderson School, autism, behavior, grandma, placement, singing, The Anderson School for Autism, Uncategorized, tagged , , on October 19, 2011| 5 Comments »

Yesterday Jonah required a “two-person takedown” at school. 

Whenever there is a “two-person takedown,” they are required to call a parent to explain what happened.  When my cell phone rings at work and I see their area code, my heart always jumps and then sinks, diving down into a numb place before I answer.  I don’t want to hear it.  I don’t want to know it.  I want to be ostrich-mom and I can’t, and I want to believe he doesn’t hurt anyone anymore, but he does.  Not nearly as often as before, they tell me, but I hate it just the same.  For me it is the worst aspect of his autism, by far. 

He was in music class, which I would imagine he’d love.  I don’t know what upset him but he became frenziedly violent.  He was removed from the music class and they attempted to bring him back to his regular classroom, but to no avail.  Hence “the two-person takedown.”

He breaks glasses and hits, scratches and tries to bite.  He fights dirty, no holds barred.  Then they calm him and he gets his proverbial shit together, but it is impossible to say for how long. 

The time bomb ticks.

People ask me how Jonah is doing.  A lot of people.  I appreciate it and their concern means so much to me, but more often than not I ask them to please read my blog.  I know that might sound insulting, or even mean, and I try to explain:  I can’t live this every hour of my life. 

If I tell the same story over and over again, I become depressed and anxious.  If I worry and perseverate on the craziness of it all, I can’t function.  So I set aside blocks of time to tell the tale through writing, which is easier, and better, and usually much more articulate anyway.  I apologize to the people who want to know about Jonah when I just don’t have it in me to talk about it, but I get the feeling they are hurt and insulted anyway.

I hate that I can’t hold my boo in my arms and rock him back and forth, singing to him and calming him.  But he is 9, not 2, and the whole point of the school is to increase independence and learning, so kids are not treated like babies just because their cognitive ability may be low.  I have to admit I would have continued to baby him had he not gone off to school.  I love him more than most people in my life know or understand.  But hearing about his anxiety, his meltdowns, his aggressions – it’s too much sometimes.  I don’t know what he understands and I don’t know what to do most times. 

I trust his teachers and caregivers to nurture and love him, but is that too much of an expectation?

The effect it has had on my mother, and on my relationship with my mother, is significant, to say the least.  Jonah is the only child of an only child, and to my mother he is the sun, moon, and sky.  He is her everything.  It makes me feel like I must compete with her to prove he is my world as well, but it’s so different for me.  For me, there is also deliverance from a life I couldn’t live anymore. 

I believe with my heart this is the best thing for my son. His best opportunity at independence – at freedom from whatever it is inside him causing him distress. At competency in life skills…at learning.  At life.  I assert this a lot in my blog posts, I know.  I have to.  I need it to be true.

But what if I’m wrong?

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jonah’s best chance

Posted in Anderson School, autism, placement, The Anderson School for Autism, tagged , , on October 5, 2011| 4 Comments »

For those of you who don’t read the Capital District Parent Pages, in which I write an article every month (even though it’s undoubtedly the “bummer” of the monthly magazine, surrounded by articles about harvest and hay rides and Halloween fun), here’s my October article.  I wrote it in early September; the deadline is the 10th of the month for the next month’s issue (which means I’m working on November’s article right now):

Normal is a Dryer Setting – October 2011

As I write this, Jonah’s been living at an educational residential facility for children with autism (what they used to call a “home”) for almost a month.  The day we dropped him off and drove away was perhaps more agonizing for us than it was for him.  At least that’s what everyone kept telling me.  At least that’s what I needed to believe.  The last glimpse of my boy’s shirt was the most difficult thing to see; the impulse to run after him was the most difficult thing to fight.

Of course we called that first night to ask how he was.  I wonder if the staff hides the worst of the news when they tell parents what happens after they drop off their child.  “He cried for a little while, but then he was fine,” they say, probably perceiving we don’t really want to know the details anyway.  We’ve played out the details in dozens of different scenarios since the day we found out he’d been admitted.

Honestly, the anticipation of Jonah’s leaving was by far the worst part for me.  The countdown.  Once he was there, I hoped he’d get more comfortable and acclimated every day.  He even talked to me on the phone the day after he’d been admitted; “I love you mommy,” he said. “I miss you.”  I could hear a care worker in the background prompting him, but it was so good to hear his sweet little voice that I just relished the words.  Jonah’s never been a phone kid and, at best, tolerates whatever you’re singing or telling him for maybe six seconds before handing off the receiver.  It’s not like he will hold a conversation anyway.  We’re just now celebrating the fact that he’s starting to say “yes” when he wants to answer in the affirmative instead of merely parroting back what you’re offering him. 

I miss him.  I remember his hugs and kisses, his scent.  I remember how his eyes lit up when he saw a train go by.  I remember chasing him down a path in the woods and letting him throw woodchips and tiny pebbles into the air. Gleeful Jonah.  Unable to bother anyone, and away from all the rules.

I have to remind myself of the bad things.  We couldn’t help him on our own.  He was going to hurt someone, or himself.  Bad.  He’d already kicked his leg through a glass window during a tantrum.  Scratched and bitten and bruised Andy and me, over and over.  Screamed in our ears.  Broke our glasses repeatedly.  Threw plates and spit soda, escaped from his car harness to attack us when either of us was driving alone with him.  Shoved my mom’s TV over, smashing it to pieces.   I have to remember.

Andy or I call every night to see how his day went, and for the first few days Jonah was unsettled, but now he seems to be getting on board with the routine of the place.  His caregivers seem like genuinely caring, invested individuals.  They say he eats very well, works puzzles, smashes clay around, and is fitting in at the house, where his room is blue and he has two windows overlooking the pretty grounds. 

 He likes to take long walks around the entire campus, they tell me, and he adores the playground.  They e-mailed me two pictures of him with big smiles.

He’s been swimming, of course, and has had only a few aggressions (and one dinner-throwing incident). 

So far I’ve been to visit him twice, and as heartbreaking as it is to leave him behind, it is wonderful to look forward to seeing him again the next time.  I trust we’ve done the best thing.  Not for us; for Jonah.  To give him the best chance for independence, growth, wellness, and learning. 

 And, most importantly, for happiness.

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the trusting one

Posted in Anderson School, autism, grandma, singing, The Anderson School for Autism, Uncategorized, tagged , , , , , , , on September 29, 2011| 3 Comments »

“You must trust and believe in people or life becomes impossible.” ~Anton Chekhov

I changed my links page to add a few fun sites I found.  Please don’t take offense if yours was removed.  I may remove all the autism blog links and just link you over to fun and general mayhem. Or make categories, or something.

Speaking of mayhem, I was in NYC last weekend.  I’d won a sales contest at work along with office/teammate ‘Sister Sledge.’  It was to see a Yankee/Red Sox game, which was rained out.

The cool parts to me were the view from the Top of The Tower Restaurant at the highest floor of our hotel.  And the fact that I got to have a four-day weekend.  And also there was a U.N. meeting and we got to see all kinds of diplomats and limos; secret service, police escorts and that kind of stuff. 

Down the street were protesters with signs we were too far away to read.  

I think some of the UN peeps even stayed in our hotel.  The place was nice but not THAT nice.  Maybe the diplomats got the kick-ass rooms.  But staying in a hotel, having a day off, traveling – they’re treats in and of themselves. 

I love coming home.  Every time, without fail, I breathe deeper and easier once I know we’re headed back.  I’m just not a city mouse, I guess.  I’m too trusting to live in a big city – especially New York.

I have to trust.  With my boy so far away from me, I don’t really have a choice.  Andy is there and can take Jonah to his apartment, give him bubble baths and look him over.  If Jonah has a rash or his toenails are getting too long, Andy can report the rash and cut the nails.  Of course they won’t take care of him the way parents would – they have other kids to look after.  It’s as if Jonah’s suddenly the member of a family of several kids with autism and their many caregivers.  It could be a damn good reality show.  If nothing else, I doubt it would be boring.

I’ve been trying not to care that I don’t get to do all the little things with him anymore:  the everyday rituals:  cutting his little nails, giving him lots of bubble soap in his bath, singing songs with him as he gets dried off and dressed.

I miss watching him sleep.

In sleep, especially, he is indistinguishable from any other child.

Sweet dreams, mommy’s boy.  I’ll be there on Saturday with grandma and daddy to see you!

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mama over the mountain

Posted in Anderson School, autism, behavior, singing, The Anderson School for Autism, Uncategorized, tagged , , , on September 20, 2011| 6 Comments »

“The bear went over the mountain, the bear went over the mountain, the bear went over the mooun—taaain…and what do you think he saw?”  ~ Children’s song

I’m the mama over the mountain.  And I can’t help but feel bad for enjoying the view.  If I keep speaking in riddle and metaphor, maybe I won’t have to admit there is freedom and a calm happiness to my life now, and I like that.  I’m going to visit Jonah again with my dad this Sunday, but I skipped visiting him last weekend.

Instead I unpacked boxes from the apartment, did loads of laundry, watched tree surgeons cut up the giant maple killed by Irene, and visited my friend D at dialysis.  I watched Almanzo and Jack get along unbelievably nicely:

Jack’s such a big lummox his ball toy is a basketball:

And Almanzo loves to squeeze himself into boxes he’s a bit too big for:

(Andy will appreciate that, if he reads this.  Put the cat in the box…)

I did normal people things, got a lot accomplished, and felt as good as if I’d rested for a long, long time.

I really miss Jonah.  I was okay with skipping one weekend.

Are those things mutually exclusive?

Either Andy or I call every night to hear how he’s doing.  Lately he’s been aggressive, but they sound like they expect it and it’s nothing they can’t handle.  They like him, even, I think.  They think he’s bright. 

He’s funny, his teacher e-mailed me.  He’s such a pleasure to have in the classroom.  I don’t even care if she doesn’t mean it.  To picture him laughing and learning is wonderful.  I want to know he is happy and not hurting others.  And I’m looking forward to seeing him again; I’ll bring a picnic lunch for Sunday afternoon and hopefully it’ll be dry enough to swing and climb on the playground.

My father wants me to help guide how often he goes to see Jonah, at least for now.  He’s concerned, maybe even over-concerned, about whether his visiting will impede Jonah’s acclimation to Anderson.   My mother, on the other hand, is different about Jonah.  Every ounce of her wants to be with him, as much as possible, all day if she could.  She’s more of the just try and keep me away from my precious grandson type.

The fact that Andy lives five minutes away is key to everyone’s comfort level about this whole thing.  His presence in the same town is more appreciated than he probably knows.

Sometimes I feel guilty because I dare enjoy this new life where I’m not attacked every time I see my son.  I’m the mama over the mountain.  Selfish, maybe.  Surreal, definitely. 

And what do you think she saw? 

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through the wringer

Posted in Anderson School, autism, hospital, The Anderson School for Autism, Uncategorized, tagged , , , , , , , on September 12, 2011| 4 Comments »

On Sunday, the 10th anniversary of 911, my dad and I drove down to visit Jonah.

Ten years ago, September 11th was a Tuesday.  I worked part time for St. Francis de Sales Church and I was pregnant with Boo.  I had just started feeling him move around inside me – a tiny, timid mouse nibbling at my insides.  Wow.  I’d been so excited the day I learned I was pregnant – June 14th, 2001.

Then, just 3 months later, September 11th.  As I learned of one catastrophe after the next, everything went into slow motion.  All action ground to a halt.   Like everyone else, I was in shock.  I felt grief and anger, terror and outrage.  I felt the eerie silence of the skies when all commercial planes were grounded.  And when planes did begin to fly again, nobody could look at them without remembering 911.

What shitty timing we have, bringing a baby into this brave new world of terror & fear, I thought.

As it turned out, growing a baby inside me and taking care of that teeny baby gave me hope again.  Of course, after 911, things were never the same.  But I’d hold Jonah in my arms and wish a mother’s wish:  maybe he’ll be the one to change the world.

On the drive down to visit him yesterday, I asked my father all about politics and presidents.  My dad’s a history buff and I like listening to his perspective, especially about things and people who made history happen before I was born.   My dad’s got quite the objective viewpoint, lending his ear to Bill O’ Reilly and Michael Moore alike before forming an opinion.  So I listened, and we talked, and it rained, and I thought oh shit, we’re not going to even be able to take Jonah to the playground – but we were lucky.  It stopped raining and by the time we got to the school, the ground was dry.  At first Jonah backed off, but then walked toward us, asking car ride?  I told him we were going to the playground instead.

He was a good boy, little Boo.  He and my dad (Jonah calls him Pa) went on the swings.

Already, Jonah has a favorite swing and goes to it every time.

Jonah laughed and sailed through the air, asking mama push?

I pushed him and pushed him.  On and on he sailed on his chosen swing.  Back home he was never all that interested in swings.  I watched him and wondered why, and I pushed him, and he let Pa push him, and I pushed him some more until it felt like a workout (which is lame, I know).  Then we walked up to the visitor’s center, where we gave yummy grapes and contraband black soda to a joyful Jonah.

Oh yeah!

In Francis Hodgson Burnett’s book The Secret Garden, wise Susan Sowerby says, “the two worst things that can happen to a child are to always get what he wants, or to never get it.”   So he gets his black soda once in a while.

After our impromptu picnic we walked down to the pond and back up to the swings.  “Who’s that?” I asked Jonah, pointing to my dad.

“Pa,” he said in his small, sweet voice, smiling.  He was good, little Boo, if a little hesitant.  We brought him back to the visitor’s center where he used the potty like a pro, and back again to his beloved friend, Swing.  But eventually it was time to go.  I prayed he’d let us go without a care, which I knew was a longshot at best.  Of course Jonah panicked.  Home? he cried.  Home?

I told him daddy was coming later (he was, thank God) and both my dad and I kissed him goodbye,  but when a care worker started to guide him toward the house, he bolted after me and clung to my side, wailing.  Twice more we got him back to his house and twice more he squirmed away, running fast after us, now openly crying.  Oh, sweetheart, I told him.  It’s okay.  Snack is soon, and daddy’s coming.

Finally he was inside his house, and my father and I walked away faster, not looking back.  Faster.

I’m grateful my dad let me weep and feel sorry for myself for as long as I needed.  He took a slower route home – hurting more than I know he let on.

I spent the rest of the night unpacking and putting clothes away in a sad daze, and when I fell asleep I had foggy, uncomfortable dreams.

This morning I wanted to turn over and go back to sleep, but I knew I couldn’t.  If you lose a Monday in my job, it makes Tuesday ridiculously hard. 

Mid-morning my cell phone rang; it was the nurse at Jonah’s school.  She told me Jonah was okay, but he was taken by ambulance to the hospital because he had a bump on his head and then he threw up, and they wanted to make sure he didn’t have a head injury.  Then, not 15 minutes later, she calls again to tell me he’s being transferred to a larger hospital in Poughkeepsie.  At this point I really started to worry.  I’m glad they were over-cautious but the two-hospital gig was unnerving.

Andy went to see him and turns out he was okay – they think he maybe had an allergic reaction to mosquito bites.  (He did have 4 or 5 bites on his forehead when I visited him with my dad).  They brought him back to his house and he rested for a while.

So for a few hours today I was trying not to panic, but inside I was terrified.  Heart through the wringer, two days in a row.

When I called his house around 8pm to see how the rest of his day was, they assured me he was fine.  He played on his scooter, ate well, and went to bed just a little early.  I called Andy and my mom to relay this latest news.

Now I’m sitting in a rocking chair and half-watching All in the Family as I type.  I’m breathing deep, in and out, smiling over at cat Almanzo on his scratching-post perch:

His paws make a heart when he puts them together, sweet thing…

…and dog Jack is hanging out looking cute:

M and I are both typing.  I’m thinking of Boo, grateful he is okay.

There are boxes and bags everywhere, but we’re ignoring that because we feel like it.  I’m exhausted and I’m writing like it.  I’d like a day where not much of anything happens.

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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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we survived the 8-23-11 5.9 earthquake

Posted in Anderson School, autism, swimming, The Anderson School for Autism, Uncategorized, tagged , , , , , , , , , , on August 24, 2011| 5 Comments »

Everyone in my office felt it, even way up here in Albany, NY.   I thought of Jonah and wondered if he was feeling it too –  the wavy, hula-hoop, on-a-boat feeling I’d never felt so strongly before, not ever having been a California girl.  They’re already selling t-shirts about it.  One picture I saw depicted the D.C. “earthquake devastation” – that one made me laugh out loud.

Yesterday was also Andy’s birthday.  I  made him a photo frame set with a bunch of pictures of he and Jonah.  He’s moved down to an apartment in Rhinebeck already; yesterday I called a bank and locked in a 3.5% interest refinance on a mortgage so I can keep the house and give Andy his share.  I am glad, and a little jealous, that he is so close to Boo. 

My mom and I and Andy are all going to go to Jonah’s school on Saturday and visit him for the first time since he was admitted on the 16th.  I hope it goes okay and he doesn’t want to come home with us.  Either Andy or I call every day to ask questions about how he’s doing.  If he’s crying for daddy or mama they do not tell me, and I don’t ask.  They generally tell me about aggressions, if there were any (yesterday he had none at all) and what he ate, and how he ate, and what he did.

Most of the direct care workers sound almost nonchalant when they tell me about his day, which is both comforting and unsettling.  I guess he is blending in well and yesterday I even asked “do you guys like him?”  They say yes, we do – he’s a great little boy.  I want so much for them to like him, hug him, teach him, nurture him.  I want warmer weather so he can swim, diving deep to undulate along at the bottom of the pool like he does so expertly.  I want them to cover his face in kisses, chase him on the playground, play music for him, and put lots of bubbles in his bath.  I want them to grow to love him.

There are no new pictures today so I’ll dig into his babyhood to post two cute ones:

Pissed off Boo

Charmer Boo

Everything remains surreal.  I am, for all intents and purposes, abruptly unmarried and childless.  I know I am still Jonah’s mother but no longer am I involved in his daily care at all.  It takes an enormous amount of trust to remain calm and collected about the placement of his little body, mind, and soul to a group of strangers, albeit professionals in the field of autism.  I trust and hope and believe this is right, this is the right thing, he will get better there, he will thrive.

There are no atheists in foxholes, and this is mine.  Not that I was an atheist before, but I’m sure praying more and calling on my peeps gone before me – all those hawks and deer, my grandparents, God, Mary, “and all the angels and saints,” as we Catholics say, to watch over Boo and keep him safe and happy.

Please.

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