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Archive for the ‘behavior’ Category

sharp that would shock them all

Posted in Anderson School, autism, behavior, placement, Uncategorized, tagged , , , , , , , on March 18, 2012| 3 Comments »

I have been writing back and forth with several mothers, some who found me through the CNN article, others I’ve known a while, through one path or another.

E has a child in a residential educational facility too — her child has been there 3 years now.  We write to one another of how it feels.   We hold one another up.   Recently, I wrote to her:

I am beginning to understand that there are a lot of us.   Who have done this thing.  Who feel this way.   Who struggle with mixed emotions – first one, then the other…feeling the guilt and the freedom together, a strange mix of relief and grief.  This is all just swept under the rug.  No one talks about it, acknowledges it, does anything about it.  I’ve had enough of that.  So many families struggle and are in pain.

I want to try to write a book.

Who wants to read a book when there’s no happy ending?  friend E  e-mailed me when I suggested this.

I thought about all the books I have loved that did not have what most would consider happy endings:  The Heart is a Lonely Hunter.  Of Mice and Men.  The Bridge to Terabithia.  The Awakening.  The Giver  (maybe; that one’s left open to interpretation).  Every Shakespeare tragedy.  Alas Babylon.  And on and on.

So I wrote back to her:  Yes. We can compel them to create one!  And she immediately offered me her support and help. Then I thought of the book, The Help – how Skeeter compiled all the stories of the women into a book.  Should I do it that way?

I think we need to have a voice.  There are a lot of people who need help.    Maybe the local autism society can help me figure out how to go about increasing awareness of the ‘behaviorally dangerous’ end of the spectrum.   The rest of us.

Maybe they could call us the prism of the spectrum of autism.  What should be a clear view through transparent glass,  fractured into bits and pieces of what is really there, all the while shooting beams of incredible color in every direction.  Thrown and shattered, though, the prism’s really fucking sharp.  Sharp like people don’t know.  Sharp that would shock them all.

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every new normal

Posted in autism, behavior, grandma, Uncategorized, tagged , , , , , on February 27, 2012| 6 Comments »

I find it difficult to believe I am thinking to myself, How terrible.  There was another school shooting today.   It’s that one word:  another.  It was not so long ago when the idea of a school shooting was truly unthinkable.  I am lucky to be Generation X, the last generation to live without the ridiculous worry that someone will shoot and kill you.  In school.

How quickly we adjust, we humans, to every new normal with which we’re presented.  Some of the things we adjust to should never be adjusted to.  Like school shootings. 

How is this okay?

In my own life I’ve adjusted to Jonah living an hour and a half away from me, in ‘the house of the rotating caregivers.’  Is it bad that I have adjusted to it?  How is this okay?

I am free of the violence, yes,  but also a huge amount of responsibility has been lifted from my shoulders:  don’t think I don’t realize and am grateful for that.  There hasn’t been this much freedom in my life in a long, long time.  And yet I am still so tight, my body bow-strung.  Shoulders raised until I bring my awareness back to them, over and over, purposefully dropping them, my neck aching, bones cracking and creaking.  Maybe I should start getting massages again.

At any rate it all fades when I listen to my breath, become mindful and quiet, know there is a lifetime of joy in every now, no matter what the now.  The operative word in that sentence is when.  It isn’t often, but more than before.

And then, at strange intervals of time and in unpredictable instances, it hits me anyway:  I am not raising a child anymore.  And yet I have a child, this innocent boy, and with Andy I must love him fiercely…help shape his future…nurture him as best we can.  I only see Jonah for a few hours every week.  Sometimes it doesn’t go well, and I don’t write about it.  While I try not to sugarcoat this blog, I do, on occasion, commit the sin of omission.

I forgot my camera this weekend but I got to see Jonah twice, Saturday and Sunday, which was cool.  Jonah was nutty – all hyper; crying for no reason one moment, laughing hysterically the next.  A random attack at grandma, and a time out on the stairs, him shrieking boobie!  boobie!  boobie! joyfully.  Moe samwich? A bath.  M & M? A ride to see train.

The soft request:  home?

…and, week after week, our eventual, deliberate surrender to a state of denial about this plea, pretending that by home he means Andy’s apartment.  Pretending he is asking for something else.  Anything else.  Pretending, lest this whole thing break both our minds and hearts.   We never bring him to the house or even near it.  He’s too geographically savvy and always has been.

Strange things are entering my life lately, and I’m just going with the flow of the river and having some fun swimming along.  My path has crossed with some really interesting people, these wonderfully philanthropic souls who truly restore my faith in humanity.  They have no idea what they are to me; they are literally my saviors.   They don’t realize I need to know that good people are out there doing good things.  I have to believe that human hearts are still generous and human kindness is not extinct.  My dad feels this too, I think, for he needs to volunteer and has done so his whole life.  Right now he volunteers for the Red Cross as a driver; he is a giver, a man who wants to do the right thing.  A man with a heart.

They are my heroes.  (They, and Guster, who honestly deserves a huge chunk of credit for keeping me afloat).

I don’t know what I’m so worried about.  The good guys always win in the end.

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christy lane, loud & really freaking clear

Posted in autism, behavior, grandma, The Anderson School for Autism, Uncategorized, tagged , , , on February 11, 2012| 5 Comments »

Not a shred of evidence exists in favor of the idea that life is serious. ~ Brendan Gill

Mom and I drove down to see Jonah today, stopping first, as usual, at Andy’s to drop off lunch and get settled before picking up Boo at his house.  She insisted on driving, though she makes me nervous as hell.  We didn’t get off to a great start because she was asking me what I wrote about for my column in the January issue of the Capital District Parent Pages, and I asked her why she didn’t know, and she said she didn’t have it.  She didn’t have any of the issues, in fact.

There is a diner a mile from her house at best; they have the issues for free in the vestibule before you even walk into the restaurant.  Perfect place to pick up a copy, which I’ve told her before.  I pointed this out to her again.

“Well I don’t really go to the diner very much,” she said.  I bite my lip, look out the window.  I know I shouldn’t say it but I do anyway:  “I’m getting mad,” I said, “and hurt.  You can’t go pick up a copy of the monthly magazine your daughter writes a column for?”  Then I sighed.  “I’m sorry,” I said, staring at her fragile, thin legs and watching her fish for a cigarette.  “Just forget it.”

I seek affirmation and seek affirmation and seek affirmation.  From my mom, my father, my friends, my boss –even my child.  Clearly I need to stop thinking of myself as the center of every scenario.  Perhaps not coincidentally, I just finished reading a fantastic book Tim Smith of Smile-Therapy sent me:  Go Givers Sell More.   The book’s co-authors talk about how the sales process isn’t about you. They suggest getting on the phone and listening to people’s stories, to find out what makes them tick, where they come from, what they dream of doing someday.  It’s got the flavor of Carnegie, only rings far less scripted, more sincere.  Be a giver.  Listen.

To listen well is as powerful a means of influence as to talk well, and is as essential to all true conversation.  ~ Chinese Proverb

Speaking of listening, my mother then decided to play a Christy Lane CD.  My apologies to her fans, but what an overproduced shmaltzy mess of songs.  She can sing, but it’s what she sings that grates.  Footprints in the Sand.  Really?  They make it into a song and present it as if it were wisdom we’d all not heard ten thousand times before?   Sigh.   Too loud, too loud, I kept thinking, until finally asking if we could turn it down just a little.  She lit another cigarette and nodded her assent.

I listened.

Jonah was about how we’ve come to expect.  Hyped-up, begging for tuna and bath, black soda and car ride, daddy in backseat.  I brought Protector Patty with us and Jonah played with her a little.

dad offers a grape

Good thing Patty has multiple eyes

Good thing Patty has multiple eyes!

She even came with us on a walk in the woods.

Like ScareMeNots before her, she insisted on hanging around in the trees…

Patty, loving life.  I swear these ScareMeNots actually show emotion.

I’m tired and I’m inundated with work, writing and re-writing.  I asked for it but it’s difficult and I’d rather write here or more for the Capital District Parent Pages…but neither of those pay me a dime.  For the test writing I get moneycoin.

It is also a nice distraction from the anxiety that seems to invade, uninvited and inevitable, when I have less to do.

Mama loves you, little Boo.

Everything is okay in the end.  If it’s not okay, then it’s not the end. ~ Unknown

I just heard now that Whitney Houston died, of unknown causes, at the age of 48.  How sad.  What a waste.  I guess if everything’s okay in the end, everything’s okay for her.  How weird that I had just typed that quote…

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jonah, jealousy, & hearing anne empie sing again

Posted in Anderson School, autism, behavior, placement, singing, singing, The Anderson School for Autism, Uncategorized, tagged , , , on January 29, 2012| 4 Comments »

Well I almost missed my connecting plane in the ridiculously gigantic Atlanta airport but thank god and little baby jason, my next flight was just one gate away, maybe a 60 foot walk.  And it was so wonderful to step off the plane and back to my pretty little city, even though it was about 35 degrees colder than San Antonio.

I didn’t get in until midnight, which is waaaaayyyy past my freakishly early bedtime.

Andy drove Jonah up to see me and “gwandma” at my mom’s house around 11am the next day, thank you Andy, so I didn’t have to get up early and drive down.  But the visit was short, and Jonah wanted daddy or grandma, not me.  I’m jealous, and it hurts, and I know intellectually I should not take this personally, but I long for Jonah to run into my arms and squeeze me tight, the way he does with his daddy.  I want him to ask for me the way he asks gwandma? gwandma?

And then of course I don’t.  Why would I want my child to hurt more by missing yet another person?  I love him with all my heart and that’s what matters.  His daddy is down there with him – takes him to the grocery store despite Jonah’s screeches and screams,  bearing stares and glares and God only knows what, then drives him to the park or the train station…in the cold, on windy days, without complaining, just so Jonah can get fresh air, fun, and exercise.  There is no denying Andy is a fantastic father.  No wonder Jonah goes flying into his arms.

But the last time I drove down with my mom to visit Jonah, I walked in the door first and there he was, my sweet little boo, sitting in the chair nearest the door.  He looked up, saw me, and immediately looked around me for his father.  And it felt like shit.

I need to remind myself this blog is subtitled “autism: sans sugar-coating.” 

I’ve been sugar-coating-by-omission, trying to sound optimistic and cheerful and fine.  This visit wasn’t fine.  They were gone before we knew it because Jonah started flipping out, getting all ramped up and squirrely, rapidly cycling through requests, growing more and more frenetic.  All red flags for meltdown/violent behavior.  Tune Fish Samwich?  Car ride?  Bath?  Bath?  Bentley (the neighbor’s dog)?  Hot dog?  Bath?  Want Cookie?  Then, always, and worst of all:

Home?  Home?  Home?

After their visit I lay down, my head aching, thinking about the Ned Fleischer Life Celebration that night.  Luckily I got to sleep for a few hours, then I picked up an old high school friend (who also has a child on the autism spectrum) and we drove there together.  

It all scared me the death.  In high school I mostly stood in the background and admired people.  And was jealous.   (There we go, cycling back to the jealousy).  Here’s where I could learn a lesson or two from my son; I bet Jonah’s never been jealous a day in his life.

But I was not jealous, not even one little bit, when Anne Empie Ryan stood up to sing.  With that incredible voice, that voice I hadn’t heard in 25 years and would have paid money to hear, she sang two soft, heart-wringingly tender songs.  Clear and strong, she bravely swallowed down everything – her grief, her self-doubt – and sang her heart out.  I put my hand to my face to try to catch the tears rolling freely at all this beauty and pain….a standing-room-only of young and old who loved a man dearly because he was, without doubt, one-of-a-kind – and her perfect tribute to him, from all of us, delivered by the voice of an angel.

Memories landed on memoies, filtering, slowly, and I was unsure at first of names, though I recognized so many people.  I put on the bravest face I could and approached many folks I knew (and a few I didn’t), trying to appear normal and fine.  Luckily, crying didn’t seem out of place here.  When I walked over to Anne after she sang, we hugged tight, sobbing and holding one another like best friends.  

Everyone was so kind to me.   I didn’t have an anxiety attack (which felt more like an accomplishment than it should have)  and I was grateful for the smiles and gracious greetings.  I had fun and met or re-acquainted myself with a dozen or two really awesome people.

That’s something to be said for Mr. Fleischer; after all, every one of them was there to celebrate him.  He attracted good people. 

It was a beautiful tribute – and though, yeah,  he may have been pissed at all the attention given to his “life and times,” I think he also, deep down, would have been proud. 

Is proud.  Smiling.

And still perpetually tanned.

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fearless fred & jonah russ

Posted in Anderson School, autism, behavior, grandma, hospital, snow day, The Anderson School for Autism, Uncategorized, tagged , , , , , , on January 21, 2012| 1 Comment »

It was crappy, very cold, fine-snowy weather when my mom and I left early this morning to meet Andy at his apartment and then collect Jonah.  The kind of weather where if you just avoid the first few hours of driving in it, you’ll be fine.  Well we were the ones on the road during the slippery beginning of the storm.  My mother wanted to drive us down in her car so that’s what we did.

Nothing can stop her from visiting her grandson.  Nothing.

I believe she’d trudge through a blizzard in boots all 90 miles if she had to.  I was laughing to M about how this would be my death day, walking around the house singing “and when I die…and when I’m gone, there’ll be one child gone in this world, to carry on, to carry on…”

“Stop that,” said M.

But we survived the small storm and got our visit with Jonah.  I brought Fearless Fred, one of my Scare-Me-Nots, down with me.  He wanted to serve and protect us on our slippery way – I imagine because he’s not afraid of anything;  he really is aptly named.

Here are some pictures from our adventures today:

First Jonah got his boots and coat off, and jumped on daddy’s bed.  When he’d calmed down enough to sit, I brought in Fearless Fred.

I handed him to Jonah.  Jonah pulled Fearless Fred’s face in to his own and gave him kisses!

Jonah and Fearless Fred, making friends…

Then it was — you guessed it –bath time!

…and more fun with Fearless Fred

Then lunchtime.  (Fearless Fred tries hard to look busy while stealing a wedge of orange with his tail).

Jonah wanted to take Fearless Fred on our snowy walk.

Then Jonah and Daddy started to run ahead, but Fearless Fred didn’t mind so much.  He wanted to play in the snow,

and hang from branches…

and climb twisty vine-embraced trees.

Show off!

I love my boy so much.  I just want to turn the heated blanket up and crawl into bed.  I have all my adopted Scare-Me-Not “kids” to tend to (only someone as kooky as I could pretend to believe that I mother plush monsters).

No, there is work to do.  And I’m fighting the urge to completely abandon reason, geek out, and send a care package to Guster.

Then again, there’s always tomorrow.

So anyway once again I ask you to make Fearless Fred and his friends go viral by LIKING the Scare-Me-Nots’ facebook page.  I am the cartoon Mommy cyclops monster with dual-lensed glasses, who administers the page and occasionally holds contests with cool prizes.

Should I organize a Scare-Me-Not flash mob?

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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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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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something wonderful

Posted in Anderson School, autism, behavior, placement, singing, Uncategorized, tagged , , , , on September 25, 2011| 4 Comments »

My father and I went down to see Jonah today.  Armed with lunch, a couple of DVDs, a bag of toys and books for Jonah’s house, and one last donation to the upcoming fundraiser gala, dad and I set forth.  We talk easier than ever before, and share stories, and if the talk gets heated, or charged with emotion, it is okay.  It was not always okay, but it is now.  Now my relationship with my father is very good.  We chatted the whole way down and arrived just a few minutes before noon.

And so I give you this week’s “black soda” face, complete with crumb-on-lip:

And, of course, Jonah’s chosen swing:

“Mommy push?”  He asked, grinning.

I think his caregivers and teachers call me mommy, so that’s what he calls me now.  I still slipped and said mama, but I can get behind mommy – it’s a ‘nomenclature graduation’ of sorts.

His school encourages as much independence as possible, and they’re right to do so.  It was too easy for me to continue to talk to him (and treat him) more like a baby than a nine-year-old kid.  At his new school he helps do his own laundry, is almost completely potty trained already, and can attend to tasks in the classroom.  They really seem to like him.  It feels good, especially when they tell me about it.  His teacher wrote to me, in part:

“Jonah’s been doing very well adjusting to the classroom and staff…we all enjoy his presence a great deal. He’s a lot of fun to have in the classroom and VERY bright!  Yesterday was the first day we had some aggression since we’ve been back!!

 When we do group work, most of the time, he sits well and seems to enjoy the lessons. We’re all still learning so much about him and part of that is realizing when he needs to take a break from work.

Although he can sit and work with us for a while, there are times when he will get teary and asks all done work?  So now, we’re trying to figure out when he needs a break before he gets to that point.

When he does get a break, he is always good about coming back to the table and finishing the lesson.

 I can’t stress enough how much we all enjoy having him in the classroom!”

This was great to hear, aside from the aggression;  I enthusiastically forwarded her message to Andy.

I’m glad to know they are trying hard to understand what makes him tick.  I’m so happy when I get to see him — and I kiss, inhale, hug, hold him as tight as he’ll allow it – to carry with me until I can see him again.

It was hot on the playground today.   After we had our lunch at the picnic table, we went to the swing set and had  fun together, Jonah wanting to stay on his favorite swing.  Mommy push.  And push and push and push, higher and higher, singing Guster and pushing, Jonah sailing high in the summer-like sun.  Finally I snuck away to the shade and Pa kept him smiling:

One of his caregivers came out and said the best way to transition him when we leave is to go back inside the house with him.  It sounded reasonable to us, so this time when it was time to go, we said goodbye in Jonah’s room and then a careworker moved in and engaged him as we walked out.  Quickly.  Trying not to look back.

(Ripping the band aid off, as it turns out, was much easier than tearing it bit by bit).

On the drive back, my dad insisted on filling up my gas tank, even though I didn’t really need it yet.  Now that he’s gone and I’m home and it’s hours later, I’m reflecting on him and how, even when I’ve been mad at him, I’ve had to admit he’s a man of integrity.

An earnest, hard-working, genuine man.  A secret-keeper.  History lover.  A man with a work ethic.  A saver.  A man with an inner moral compass always pointing in the right direction – who’d always stop and defend another against hurt or hate.  Proud of his ancestry and family history.  A man who’d help you move and never take a dime for doing it.

A man who believes in giving people a chance and, if need be, a leg up.  He roots for the underdog and wants always to do the right thing.  When he says just try your best, he means it.  I think because he always tried his best.

He always tried.

If I had to pick a song to express him, inasmuch as you can ever encapsulate a person that way, I’d pick “Something Wonderful” from The King and I.

“This is a man who thinks with his heart,
His heart is not always wise.
This is a man who stumbles and falls,
But this is a man who tries.

This is a man you’ll forgive and forgive,
And help protect, as long as you live…

He will not always say
What you would have him say,
But now and then he’ll do
Something
Wonderful.

He has a thousand dreams
That won’t come true,
You know that he believes in them
And that’s enough for you…”

I’m grateful to have such a man as a father, and as a grandfather for my little Boo sweet boy.

I love them both very much.

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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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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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