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revelation (for today, just a poem)

October 2, 2011 by The Never Normal

There is a place beside myself inside a time
where sated muses sit upon a pot of soiled rhyme,
pretending nonchalance in planting story seeds.

You enter here through no known wall nor door,
unaware at once of what my wonderings are for
yet ready with applause at these, my simple deeds:

I capture clear a lily curled and drying on a sill;
I hold inside an iron fear, a withered strength of will;
my voice is of the meekly humbled, quietly it pleads.

– – –

There are, housed within the wombs of harvest time,
unborn tales of living inside nine months’ maritime
where we remember not of what it is or where it leads –

but tasting once, we sample air again, and breathe in more;
budding flora filling youthful lungs with life’s allure,
growing overnight at time-lapse photo breakneck speeds.

I know the push of independent sunlight made me ill
as if I rushed from birth to death in one swift angry kill,
and dying, became one who now in every way succeeds.

Posted in Uncategorized | Tagged , , | 1 Comment »

the trusting one

September 29, 2011 by The Never Normal

“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!

Posted in Anderson School, autism, grandma, singing, The Anderson School for Autism, Uncategorized | Tagged , , , , , , , | 3 Comments »

something wonderful

September 25, 2011 by The Never Normal

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.

Posted in Anderson School, autism, behavior, placement, singing, Uncategorized | Tagged , , , , | 4 Comments »

mama over the mountain

September 20, 2011 by The Never Normal

“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? 

Posted in Anderson School, autism, behavior, singing, The Anderson School for Autism, Uncategorized | Tagged , , , | 6 Comments »

through the wringer

September 12, 2011 by The Never Normal

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.

Posted in Anderson School, autism, hospital, The Anderson School for Autism, Uncategorized | Tagged , , , , , , , | 4 Comments »

wildwood without him

September 8, 2011 by The Never Normal

For the September issue of the Capital District Parent Pages, I thanked Wildwood School.  I will never be able to repay what they have done for my son and my sanity.  Always I felt supported.  Always I knew they were doing their best with Jonah, with all the kids, treating each like an individual.  The school year has started at Wildwood and Jonah’s not there. It’s surreal.

For those of you who don’t read the magazine, here’s the article I wrote:

Normal is a Dryer Setting

September 2011

Autism: When your child is diagnosed, you’re abruptly initiated into a fraternity of parents, all asking questions for which there are no straightforward answers.  Before you have a chance to fully comprehend what’s happening, you’re hurled into a world of acronyms, specialists, and an array of treatments – most different, some opposed to one another, and none guaranteed to alleviate the symptoms of this mystifying condition.  It’s no coincidence that the autism awareness ribbon has an array of colorful puzzle pieces on it.  Like a rainbow, the spectrum of autism spreads across the population and manifests itself in a million different ways.  If you’ve met one child with autism, you’ve met one child with autism.  And yet their individual colors are beautiful and bright.

We are lucky; Jonah was diagnosed and received special education intervention services early.  Just before he turned three, I visited special education schools all over the Capital District and was especially impressed with Wildwood School.  When we enrolled him, we had no idea how lucky we were to snag an opening – oftentimes there’s a waiting list.

In the 6+ years Jonah’s been at Wildwood, we consistently encountered teachers, social workers, and staff with an amazing dedication to the nurturing of each individual’s learning potential.  We watched as his speech teachers worked tirelessly to draw language and other communication from him.  We loved hearing about his love of rhythm, music, and performing.  To this day he can speak only in short phrases, but can sing whole songs  – usually Guster (since that’s what mama plays in the car all the time).  We laughed as he once stole the mic (and the stage) at an annual concert amid the mild chaos that’s normally the backdrop for these events.  Nobody minds.  There is solidarity there.  We all understand the shrieks, bouncing, flapping, and whatever other mayhem.

Every year Wildwood has a “moving up” ceremony for each class.  This year, Jonah’s “moving up“ ceremony was also a “moving out” ceremony; instead of returning in September, he’s moved to  residential educational placement an hour and a half away.  At first I had no intention of attending the ceremony.  For one thing, it’s painful emotionally, and I also figured he’d go all violent on someone/everyone, hurting people, screaming, caught and restrained.  But then I decided, if the people at Wildwood are determined to include him, I can’t ignore their efforts.  And so I decided to go.  Not surprisingly, they had a plan for Jonah.  Until it was his turn to walk onto stage, they wheeled him around in the hallway on his “scooter,” keeping him calm.  At the last moment they got him off the scooter, opened the auditorium door, ushered him through, and guided him onto the stage, where he was handed a rolled certificate. The MC gave him a verbal accolade, best challenge of the summer or something I don’t remember.  I was too nervous.

I’m so glad I went.  I got two decent pictures of him accepting his “diploma” with a look of confusion on his face.  In one of the pictures he’s looking right at me; I can almost hear him:  hey mama?

On the way home from the ceremony, I realized what makes Wildwood such an excellent school.  When things seem hopeless, they hope anyway.  When there is no way, they find one.  If a method doesn’t work, they try another.  Determined to nurture the children and young adults in their care, Wildwood School is a place where individuals are guided to reach their greatest potential.

I will always be grateful to Wildwood School for advancing their vision:  …”a world that embraces a fundamental respect for ALL people, their strengths, their uniqueness, their creativity and the infinite diversity that we each represent.”

Thank you, Wildwood.  May your kindnesses come back to you a thousand fold.

Love,

Jonah Krebs and his family

Posted in autism, Uncategorized, Wildwood | Tagged , | 2 Comments »

okay enough

September 3, 2011 by The Never Normal

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).

Posted in Anderson School, autism, behavior, grandma, The Anderson School for Autism, Uncategorized | Tagged , , , , , , , , , , , | 9 Comments »

two visits: to boo, from irene

August 29, 2011 by The Never Normal

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.

Posted in Anderson School, autism, grandma, The Anderson School for Autism, Uncategorized | Tagged , , , , | 9 Comments »

we survived the 8-23-11 5.9 earthquake

August 24, 2011 by The Never Normal

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.

Posted in Anderson School, autism, swimming, The Anderson School for Autism, Uncategorized | Tagged , , , , , , , , , , | 5 Comments »

lessons and blessings

August 21, 2011 by The Never Normal

It’s been almost 6 days since I have seen my boo.  I’ve learned a lot of things in those 6 days – a quick, hard, University of Life experience I never applied for and didn’t want to attend.

In 6 days God created the world, they say.  Well, I did too, in a way.  A new world for me.  And a new world for boo.

My world is now near-free of dread.  I don’t mean the “damn, tomorrow is Monday and I have to go to work” dread.  I mean the dread that lives inside you and owns you.  The kind that makes you steel-stiff & come unglued – the kind that’s unrelenting, ubiquitous – there all at once, all the time, even in your dreams, for whatever the reason. ‘Capital D’ Dread.  It’s gone.  I am not going to randomly show up at work with scratches on my arms & face and I am not going to trudge into LensCrafters again and again with broken glasses to have them repaired by S, who I’ve seen so many times we are almost-friends.  She told me she uses my story at work as an example of what their optional “protection plan” can be like, and for whom it can be downright necessary.

And of, course, no more dread of Jonah going away – of counting weeks, days, clinging to him even as he tries to bite or hit me, longing to keep him at our side.  That dread is gone too, and it’ feels like setting down a load of bricks I’ve been carrying, sharp and hot in the summer sun.

From what Anderson School has told me, Jonah is acclimating well and more quickly than expected.  He adores their playground, their pool, and all his caregivers.  They e-mail, talk to us on the phone, send pictures (here’s another one),

and communicate with compassion and understanding, even though you know their days have to be difficult and tiring at best.  Some have told me how they have already grown to like him a lot.  I am grateful.  How happy he looks in the pictures they send!

And all this support, from everywhere – people I know, people who read my blog, teachers and friends, co-workers and relatives — it is overwhelming and humbling.

A mystery person even left flowers for me and a bottle of water for the flowers on top of my air conditioner outside the apartment:

That was pretty cool.

I miss my boo, but I know I have made it over the mountain.  Jonah will too.  And Andy. I know it.  I feel very blessed.

If I were asked to give advice based on other things I’ve learned quick & hard, I would say:

1) Don’t get all mercenary and clingy with possessions, money, or anything else.  Watch “The Gods Must Be Crazy” (even if you’ve seen it before) and it will remind you why.

2) Everything is impermanent.  True story.

3) Judgment of others is wasteful arrogance, and the judgment almost never assesses its target correctly.

4) Kindness is never a mistake.  When in doubt, be kind.  Choose it every time and you will never be wrong.  Do kindness.  Not just when the opportunity crosses your path.  Practice conscious kindness.  It comes back to you.  Trust me.  In amazing, incredible, miraculous ways -often when you least expect it and most need it.

5) Calm the hell down when driving, running, working, going shopping, dealing with children, people you like and dislike.  Just calm the hell down.  Breathe deeply.  For God’s sake, breathe.

6)  Love.  Love as much and as hard and as completely as you can.  If you have lost someone and still care for them, love them anyway – even if they’ll never know it.  Love the seasons, the cold and the rain as well as the sun and the warmth.  Help someone.  Do something.  Care!  Don’t watch the news and shake your head and say that’s too bad.  Find ways to make a difference, even if it’s just to one person.

Before I get carried away, and I suppose I could type all day, I want to say I have not conquered these lessons – only that I believe them to be true and my goal is to follow them, as much as possible, from now on.

Oh – and one from my dad:

Before you say something to someone, ask yourself if it is true and if it will benefit the other person in any positive way.  If not, don’t say it.

That’s a good one, dad.

My father’s doing volunteer work now; he drives people to the food pantry in a van, which makes me prouder of him than anything else he could do.  He also is letting me live my life and make my own decisions, something which must be difficult for him, because he loves me and doesn’t want to see me hurt.  He has had to trust my smarts and my own judgment, and he’s doing it all while still remaining supportive.

My mom is counting the minutes til we go see her precious grandson – I think we’ll go for a picnic next Saturday with him if it is nice, and Jonah can play on the playground.   She has been an enormous support, especially for Andy, when no one else was.  She has opened her home to Jonah (and whomever is watching him) over and over and over again, withstood a broken TV and other household items, scratches, tantrums, bathwater splashed everywhere, and toys scattered about.  She is a true testament to the love between a grandmother and her grandson.

Andy is proving both courageous and Superdad by moving so close to Jonah, so he can see him (and oversee him) as much as possible.  Although we are separating, I will never choose to remember the bad things.  Only the good – his kind heart and earnest, helpful spirit that always, unfailingly, reaches out to others when they need anything at all.  Here is a man who, quite literally, would give you the shirt off his back, and I will always love him.

I don’t know how this turned into an awards ceremony but if I am going to spend paragraphs giving mom, dad, and Andy kudos, then I certainly cannot forget M – the manwho took so many days off work to be there, with or for me, time and time again…the man who slept between Jonah and me on a cold hard floor at a psychiatric center for three nights just to protect me…the man who drove 40 minutes to visit me every day at yet another psychiatric center, bringing colorfully beautiful flowers when I’d gone suicidal…the man who came with me several times a week for months to help me watch Jonah, taking on the tantrums and scratches and screams of a child not his own…  The one I go places with, read to, watch movies and take long rides and visit the Almanzo Wilder Farm with.

Here are some pictures from when we visited the farm one day this week, just for respite, traveling slowly through the Adirondacks until stepping reverently over the threshold of Laura‘s husband’s childhood home (yes, I am that into them):

Me, grinning under the historical sign

This massive tree is thought to be 200 years old.  Almanzo climbed it!

…and his home, restored.

I have a dozen or more pictures but I mustn’t forget that I can always start a Laura Ingalls Wilder blog and ramble on about her there.

It was a peaceful, pleasant day. Some weird part of me feels like this week off work is over and so not only will I be going back to work but to the Jonah routine too.  This has not really hit me quite yet, I think.  And there are definitely two sides to this coin – loss/pain and relief/freedom.  I hadn’t even thought about the second side, really, in a positive way, but my therapist has helped me with perspective, so finally there is very little associated guilt, which I was full of…thoughts like “I shouldn’t be having a good time since I sent my boy to live in a home.”  No.  We should all be having a good life.  We all deserve to be happy.  Jonah too.  Jonah especially!

Please continue to send good energies and prayers to my little Boo.   (I can’t wait to hug him)!

And once again, my prayer is simply thank you.

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