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Posts Tagged ‘Laura Ingalls Wilder’

50 degrees

Posted in Anderson School, autism, behavior, grandma, language, music, Uncategorized, Writing, tagged , , , , , , , , , , , , on November 2, 2014| 3 Comments »

Holy cold.  The moment I announce my intent to go all winter without light or heat, I’m ready to drag out the space heater; it occurs to me I should ask a plumber just how low I can let my temperature get before I’m in danger of my pipes freezing.  The fact that this is all self-imposed hardly occurs to me.

It’s 50 degrees in my house right now and not even freezing temperatures outside yet.  My thermostat is still at 45 but I’m not sure that’s high enough.  I researched a little on the ‘Net but mostly there’s advice for people leaving their homes for the winter.  The fact that I run hot water to hand wash my dishes and take showers should count for something, right?  (That’s not a rhetorical question.  If you know, please tell me!)

I’m reading Laura Ingalls Wilder’s The Long Winter over and over, reminding myself of what she and her family survived through conditions far worse than my own.  I re-watch Alone in the Wilderness, a documentary about Dick Proenneke living alone for 30+ years in Twin Lakes Alaska, and hear his words echoing in my mind:  “It’s a toasty 40 degrees in the cabin today.”

I think to myself I can do this, I can manage.  I can “come out” of the cold to my car, or a friend’s house, or even the dreaded mall.  But it’s really hard to get out of my toasty bed in the mornings.  Manzo-kitty even has his own comfy blanket and snuggles next to me on the bed.

Yesterday my mom and I drove down to visit Boo.  On the way we listened to her new Barry Manilow “Dream Duets” CD, in which he has inserted himself into various deceased singers’ tunes – everyone from John Denver to Marilyn Monroe.  It’s kind of cool, in a slightly creepy way.  At least it wasn’t Sing Along With Mitch.

Oh, and it turns out they did find a train conductor costume for Boo to wear on Halloween, and he loved it.

Jonah, train conductor extraordinaire

Jonah, train conductor extraordinaire

One more reason to appreciate the folk at the Anderson Center for Autism.

I also found out they think his aggressions have increased in school due to some classroom staff changes; his aggressions at Birch House (where he lives) have stayed steady, which is to say mostly mitigated.

At least there is a reason, an antecedent.  It’s a huge thing for us…to be able to know why Jonah is upset.

At Andy’s apartment Jonah was overwhelmed, I think, by the variety & choices of items to eat.  Both my mother and I brought special items from Halloween with which to spoil Boo.  Usually he enjoys taking items we bring and putting them away – in the cabinet, refrigerator, or wherever else he deems they belong.  This day, though, he began to open up mini potato chip bags and chocolate cookie boxes and the silver-foil wrapped tuna fish sandwich, all before we could interfere and take most of the excess away.

Then he started scrolling through requests for things he didn’t have before him:  pot pie? pepperoni?  strawberry milk?  apple cider?

He was getting “squirrely,” as Andy and I call it, and so when I tried to calm him or help, Andy stopped me.  “Let me handle him,” he said firmly, as he often does.  Tears always spring to my eyes; while I know Andy is trying to protect me from a possible aggression, it is frustrating to have Jonah largely uninterested in me and at the same time be prevented from interacting with him – even if it is for my own safety.

On our car ride to get apple cider, I snapped one picture of him smiling and one of him imitating a strange skill I possess (of touching my tongue to the tip of my nose):

happy boo

happy boo

he's not as skilled as his mama but he tried

He’s not as skilled as his mama, but he tried…

And then a video of Jonah’s requested song:  Live for Love, by Prince…you can see his daddy handing him some lip balm for optimal comfort during Boo’s listening, rocking joy:

He’s got a new method and skill for selecting desired music.  He’ll say to daddy Wan take a picture? which actually means May I please have the case of CDs?

Then he announces the name (actual or self-invented) CD he wants, and selects it from the sleeves within the case.  Once he hands it up to daddy, he announces the number of the track he wishes to hear.  Sometimes it’s one simple request: number seven?  and other times Andy has to start at the CD’s beginning and Jonah will say number one? number two? etc. until he’s found (and will eventually memorize) the track number he really wants.

Although this new skill is impressive, it gets old when he wants one song from each CD, after having zipped up and handed the case back to Andy, requiring Andy to take it out and hand it over again – and eventually, inevitably, Andy simply suggests radio.  Usually this is cool with Jonah but once in a while he’ll confuse us with his rapid-fire requests:  Diamonds and Pearls?  – followed by  No Diamonds and Pearls?

And so once Andy suggests radio Jonah is usually resigned to his pop tunes by whomever-the-hell is cranking them out these days.  I’m a geezer with Top 40 and know barely any of the artists.   My tastes tend toward alternative (ex. The Pixies or The Elizabeth Kill), or classic (ex. The Beatles or Pink Floyd), or classical (ex. Mozart et al).  And of course, Guster, best of them all.

Suddenly I’m in a writing zone again.  Maybe November will be blog-heavy.  Who knows?  It keeps me warm, oddly enough – or at least is a distraction from the cold!

I did not end up going to see Boo today.  I am sneezing and stuffy, and yesterday I took my very first Boniva pill to stave off my osteoporosis.  I think I’m suffering a nasty-ass side effect of it with which I won’t gross you out.  At least I only have to take it once a month!

Hopefully the side effect goes away before the Jethro Tull show tonight my cousin B is treating me to experience.

Time to drink a hot beverage, do some jumping jacks, put in a movie and run in place, hold my hands over a candle, bake some cinnamon rolls (and open that beautiful oven door all the way afterward to release the heat), take a short drive with the heat blasted.  Anything besides sit still and f-f-f-f-freeze.

Hello from the hibernating hippie!

Hello from the hibernating hippie!

 

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a hollow day

Posted in Anderson School, behavior, grandma, placement, tagged , , , , , , , on October 31, 2014| 1 Comment »

If I don’t write something today it will be the first blank month since I’ve started this blog.  I’ve got plenty to say but I don’t want to say it.  It’s that fantasy-land thinking – If I don’t put it down on record, it isn’t happening. 

Which is not to say that I am not incredibly grateful, somehow simultaneously with the strong compulsion to smash something and scream.  I am grateful for every day in this new life since I have decided to live on my own ~ and somehow found the truest love I’ve ever known within that solitude.

I am grateful for everything I have, all my family and friends, my dumb American material possessions, my shelter and my food…grateful for everything for which Jonah has been gifted – an incredible education, a safe place to live, teachers, caregivers, awesome staff, a safe and loving environment.  I am grateful.

In order to guard against complacency, I have made unusual life choices.  At first it was a game, just to see if I could make it to October 1st without turning my heat on.  Then I decided (in honor of Laura Ingalls Wilder and Dick Proenneke) to stop using lights as well.  I bought some soy-based candles and I bundle up, typing with fingerless gloves and pushing the idea of heat into November now.  I stopped using the dishwasher and I turned in my cable box.

Last night I turned on the TV to watch It’s the Great Pumpkin, Charlie Brown (on one of my three channels) ~ I’d forgotten how maddening commercials are.  And so I watch movies instead.  I still do laundry and shower in hot water, which is more than either Dick or Laura had, but I’m trying to eat by going to the store only once a month or so for fruit, vegetables, half and half, coffee, butter, and milk.  I’m eating out of my ridiculously full cabinets.

Now I’m thinking seriously of going all winter this way.  I live alone, so there is no one to hurt or annoy.  I wonder how long I can last; I’m a skinny, cold little thing so I won’t be arrogant enough to say I can do it for certain.  I’ve got my heat set at 45 so my pipes won’t freeze and neither will I.  It will be interesting to see what I’ll owe on my next National Grid bill.

I know I’m a weirdo.  One of my relative’s favorite mantras to me is Why can’t you just be normal?

Because normal is a dryer setting.

It’s the best answer I’ve got.  So why the hollow day?  Sigh…

Jonah has been aggressing more and more often.  Three incidents requiring two people take-downs just this week.  There is hope in that the incidents, which before came with no rhyme or reason, are now reactive to things like fire drills or too-crowded rooms with over-input of sensory activity (lights and sounds and noise and chaos, like last night’s Halloween party).

I don’t even know if I’ll get a photo of him in his costume (which was a aqua-man looking thing I found in WalMart; I hate going there).  I guess he wore it okay.  They told me he’d like to be a train conductor (believe you me he did not ask to be a train conductor, because he can’t make those kind of cognitive leaps).  It makes sense, though, the way my Boo loves trains.  But train conductor costumes top out at size 8-10, and Jonah is a 10-12 now.  Almost everything he’d wear, understand, or want to be comes in toddler sizes only.  I wish I had the know-how to put together a Halloween store for kids with autism and other disabilities.

And now it’s Halloween.  I have always loved Halloween and dressed up in costume (even with nowhere to go) right up until this year, when being alone seems to have taken the wind out of my sails.  I compare it to the first day of school or the school picture-sharing day, when parents show off photos and memories and happy shit about their adorable kid in his or her outfit/ Halloween costume, having more fun maybe than any other day of the year.

I hate it, and I hate that I hate it.

But I am not an angel and I am not a saint and I have these stupid, useless feelings of envy for these everyday joys denied Jonah, Andy, and me.  Andy is waaaaay better than me at not caring.

Yes, there are advantages.  I don’t have to go out in the cold with my Boo and bring him from house to house, trying to explain to people why he won’t wear his costume or say “trick or treat” — though, thanks to the Anderson School for Autism, he does now wear a costume, and they do take him trick or treating, and he does manage a discernible “trick or treat.”  Irony.

Then there are our visits.  When Grandma and Andy and I show up at Jonah’s house on his campus to pick him up, he is always waiting at the front door.

jonahinthewindow

He flies into his daddy’s arms for a long hug, then tells grandma what he knows she’s brought for lunch, and with nary a glance at me he runs off to the car.  Then he’ll say mama in the backseat? while shoving me as far away from him as possible.

I understand Jonah is daddy’s boy and I am glad of it.  And I do get hugs and kisses, sometimes, once we are at Andy’s apartment (another thing I am grateful for, that Andy and I get along well enough to share Jonah visits).  But he clearly is unattached to mama now, and there isn’t anything I can do but sell my home and move closer to him, to a small apartment, to spend more time with my Boo.  It is something I am considering – but I can’t spend time with him alone and would need to find someone to help me.

My boyfriend Tim could do it.  He is a direct care worker for individuals with autism and can do everything from restraining to administering meds when someone under his care is having a seizure, gently holding them and keeping them safe and as comfortable as possible.  Tim is a gentle, loving, caring soul ~ he has met Jonah once, got along well with Andy, and was unfazed when Jonah had an aggression…standing at the ready to help but at the same time unobtrusive and friendly.

But he lives in Bloomington, Indiana…and has his own three children.  I am here, and have Jonah.  We do our level best to see one another once a month and are so far successful, for we do yearn for the home of being together.  Next weekend we are meeting in Pittsburgh; it is a halfway point for us — and we’ve found a nice B&B and an aviary museum and science museum we’re interested in visiting, as well as nature trails near a lake and a river.   This weekend I will go see Boo both weekend days to make up for the missed visit the following week.

At any rate that’s what happening.  I am overjoyed and frustrated and ecstatic and sad in turns, but will meditate today and throw myself into work with redoubled effort, for after November 1 comes our fundraising push and media-story garnering at Modest Needs, where I work.  I have sought a second, part-time job, wuth no luck so far.

If you are interested in Modest Needs, a BBB top-rated nonprofit, please consider stopping by our website and donating even a dollar or two to help those living on the edge of poverty (but who make barely too much for public assistance) to give them a hand-UP through a hard month, or to provide their kids with holiday gifts when their families meet with unexpected expenses, or to help veterans return home and re-acclimate to society with rent help or assistance to pay a medical bill, etc. while they wait for VA benefits.

I’m so proud and happy to work for these guys.  I was a donor for 8 years or so before I started working for them in May of 2013.

I am blessed.  Writing this all out allows me to feel it strongly, palpably, fully.

Finally,  here are some recent pictures:

mama and her j

Mama and Jonah

OLYMPUS DIGITAL CAMERA

Introspective Boo

Jonah, chugging his "app-oo ci-dah"

Jonah, chugging his “app-oo ci-dah”

1010141310a-1

And one of my Tim and me, sharing time during a recent visit when he flew to see me.  I am a lucky woman indeed to have found such a love.

May all of you enjoy a very Happy Halloween and blessed Samhain!

 

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darwin’s poster children

Posted in Uncategorized, tagged , , on September 19, 2013| 3 Comments »

I’m sorry I haven’t been around, writing of Boo and his adventures.  As I slowly recovered from one illness, writing work came in and I had to play catch-up.  Then I got sick again.  Today I can at least sit here for a few minutes and type.

I’m kind of a sickly chick.  I am not Darwin’s poster child, and I guess when one of Darwin’s weak ones has a baby, that baby is bound to be a weak one too.  I’ve been thinking too much about this, too much about the suffering world.  When I am so sick it is easy for me to be a baby, to cry, to let the floodgates open and allow ugly, frightening, depressing emotions pour in…to allow my body-pain the company of emotion-pain.

Jonah has turned his two days from last entry’s poem into a long strecth of good boy.  The truth is he thrives at his residence and school. Although he loves to visit with daddy and still protests going back to school when the visit is over, it is the best place for him to grow and learn.  We are resigned to that now.  We are grateful for it.  But still we hate it.

I haven’t stopped searching for a way to mitigate Boo’s aggressions, and I haven’t stopped wanting to fill up my “help” page with resources for others in my situation (or a similar situation).  I even want to start two new blogs – a Guster blog and a Laura Ingalls Wilder blog.  God knows when I’ll get around to making it all happen, but I plug along.

I will be back soon.  I found my camera battery, so pictures are coming too.  🙂

I could type on and on today, but I don’t want to. I’m not in a good head-space and I need to sleep a little more.

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for jonah i will

Posted in Anderson School, autism, The Anderson School for Autism, tagged , , , , , on August 29, 2012| 4 Comments »

Unless you just stumbled upon this blog, you know my son Jonah lives and goes to school at the Anderson Center for Autism.  We could no longer keep him home because of his violently aggressive behaviors.  Jonah has come a long way in the year he’s been at Anderson!  So many parents like us depend on this school for their child’s fundamental education.  Anderson is holding a Fundraising Gala on October 6th.  The idea is to raise money for the school.

I am not one to ask for money often, but today I am.  For Jonah I will.

I am so grateful to the Anderson Center…

If you can give any amount, I will appreciate it very, very much. (Choose gala donation when you get to the donate page). Your information will be kept private and your donation will be processed on a secure server, though you will be acknowledged in the Gala Program and of course can use your donation as a charitable contribution on your taxes.

And if there happen to be (or if you know) any owners of restaurants, Bed and Breakfasts, stores, hot air balloons, art centers, museums, bookstores, grocery stores, amusement parks, gyms, hotels, airlines, spas, hair salons, gas stations, toy stores, resort properties, etc. reading this– or if you have a superfluous surplus of iPads, those things/gift certificates/gift cards would be amazing to have for the silent auction.

May your kindnesses come back to you a thousandfold!

I’m starting my blog vacation now…be back in town on the tenth.  I am so excited I am almost shaking just to think about crossing the threshold of Laura Ingalls Wilder’s home, kept just as she left it when she died three days after her 90th birthday, on February 10th, 1957.

(Yes, I know what a geek I am).

Some Jonah pictures and maybe a video until I return:

Isn’t this a great picture of Jonah and Grandma?

A video of Jonah being on-purpose bad and somewhat gross and us not doing much about it.  We choose our battles.

solving complex algebraic equations

disappearing into a dive

Bye, people who use vacation time to go to beaches on oceans and lakes instead of the center-of-the-USA Missouri Ozarks home of a dead children’s book author!  You’re missing out.

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Pa’s fiddle, my DNA profile, & pics of Boo

Posted in autism, behavior, doctor, swimming, Uncategorized, tagged , , , , , , , on July 15, 2012| 3 Comments »

Sometimes if I leave too much time between entries, everything happens at once, and then I’m facing the task of the telling of it all.  How about a Reader’s Digest version, at least for now?  I’m so tired; I think I’m getting sick.

  • I got my genome results and now have all this information I can barely understand.  I think I’ll  contact a genetic counselor and see if s/he will go over it all with me.  I am mostly Northern European and I have genetic similarities with the following famous people:

    Famous People

    • C3 Genghis Khan
    • B2a1 Chris Rock
    • E Al Roker
    • E1b1a8a* Desmond Tutu
    • E1b1b1c1* Napoleon Bonaparte
    • G2a3b1a King Louis XVI
    • I1 Jimmy Buffett, Leo Tolstoy, Warren Buffett
    • I1a Alexander Hamilton
    • J Matt Lauer
    • J2a1b Dr. Oz, Mike Nichols
    • O1a1 Yo-Yo Ma
    • R1a Anderson Cooper
    • R1b Charlie Rose, Emperor Nicholas II of Russia, John Adams, John Quincy Adams
    • R1b1 Franklin Pierce, James Buchanan
    • R1b1b2a1a Malcolm Gladwell
    • R1b1b2a1a2d Mario Batali
    • R1b1b2a1a2f Stephen Colbert
    • R1b1b2a1a2f2 Henry Louis Gates, Jr.
    • R1b1c William McKinley, Woodrow Wilson, Zachary Taylor
    • T Thomas Jefferson

    Don’t ask me what the letters in front of the names mean, because I have no clue.  I am such a Heinz 57 that I ‘m genetically similar (in order of closeness) to the:  French, German, Norwegian, Irish, Austrian, English, Australian, Russian, Ukranian, Polish, Italian, Sardinian (an Italian island), North Italian, Tuscan, Basque, Curripaco, Puinave, Palestinian, Bedouin, Druze, Mayan, Pima, Surui, Karitiana, Mozabite, Byaka Pygmy, Mbuti Pygmy, Mandenkalu, Yoruban, and, last but not least, the San –  one of several names used for southern African people who speak “click” languages and whose traditional means of subsistence is hunting and gathering. (yes)   There is information about genetic predisposition to disease and carrier status, but not much that helps Jonah.  There’s no autism gene marker, and I am not a carrier for arthritis or any eye problems.  I actually have a decreased risk of just about everything.   There is a “relative finder” part of the site and I am already hearing from people within the site who think they might be my 3rd or 4th cousins, based on lengths of pieces on DNA strands.  Or something.  I need to take their “Genetetics 101” course.  Lots more to this story but I promised the Reader’s Digest version so there you go….at least for now.

  • I have decided I am going to see Pa’s fiddle and soon, damnit, come hell or high water.  I turn my back on the beach this year and am flying with M to Springfield, Missouri, where we will stay for 4 nights.  The first full day there is when I want to drive to Mansfield and go to the Laura Ingalls Wilder House and Museum.

* It will be my birthday! *

To end, as usual, I will post Saturday-Jonah pictures.  He went to the pediatric rheumatologist on Friday and was more than a little squirrely on Saturday.  But we had plenty of water fun!

Boo in the backseat, sucking his thumb, sittin’ all sideways, listening to old school rap with his dad. Punk Ass.

I tried…

…and tried…

…to get a cool picture of him jumping in, but (A) I’m not a photographer and (B) my camera is your average digital – always seems to take the picture a half a moment after you want it to.

…and finally got him mid-jump!

My happy water-boy-boo

Jonah says “need help?” and his dad lifts him out of the water.

He’d try to make it to the other side of the Hudson if we let him!

Bedtime for me.  It’s like 8pm.  LAME.

My very DNA is achy.  😉

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the bottom of all this

Posted in Uncategorized, tagged , , , , on June 25, 2012| 2 Comments »

Those of you who can find the thread in the midst of all my tangents and ramblings may be wondering what is happening with Jonah’s eyes.

Two or three blog posts ago (the eyes have it) I said:

“What’s keeping me from freaking out entirely is that God has gifted me with doctor number three, brilliant and kind, who lets me cling to him…all during breakdowns, emergencies, and these kinds of what-the-hell-do-we-do-now decisions.   He’s going to help us get to the bottom of all this.  He’s my ace in the hole.”

Luckily, before I needed to ‘play my ace,’ the doctors decided to talk to one another.  For now we’ve all come to the conclusion that the Reticert implant is best left in place for now, even though the thing is nearing the end of its efficacy anyway. 

Plus now there is all this concern about the “activity” in his right eye.  The new drops have mitigated it so far, we’re told.

Next we’ll go back to the pediatric rheumatology doc and find out about another drug she may want to try.  I like her; she’s cool, knowledgeable, and kind with Jonah.

Still, I feel like we’ll never get to the bottom of so many things.  But maybe that’s all right.  It has to be all right.  I don’t have any choice but to learn what I can comprehend and weigh options with Jonah’s dad and all the endless scads of doctors. 

It’s like looking at my boy through the water, all refracted by light and liquid.

Boo likes to be underwater

Jonah likes deep pools best where he can swim to the bottom and ‘merboy’-himself along as if finned. 

At the bottom of all this is Boo.  It’s always been Boo.  Like Mitch Albom, Jonah tells his mama:  We’re not a wave.  We’re part of the ocean. 

But whales live in the ocean, Boo.  Ones that swallow Jonahs who’ve been insubordinate. 

“…(and) you can’t hide; standing under these stars
They know everything… they know where you are.
You’re in your head, you’re all turned around with it
And they’re shining down their light to bring you back again“

~ Careful by Guster

So soon we will know more, about both Boo’s eyes, and maybe try harder to get him to wear sunglasses for his light-sensitivity.  And I keep files and notes during doc-conversations so I don’t forget details.  If I cannot parent him I can advocate for him.  And others like him. 

I miss him so much tonight, though.  Usually I don’t let myself think about it, about him not being with me.  But sometimes because of a scent or a sound, all at once I have a punched-in-the-gut feeling, and I miss him like the day we dropped him off.  My God, it’s been almost a year. 

He has made a lot of progress.  He is toilet trained nearly completely and his language and social skills are coming along.  You can ask him a question now and usually he’ll answer it. 

“How is your sandwich, Jonah?”

“Good.”

It used to be more like:

“How is your sandwich, Jonah?”

“How is your sandwich, Jonah?”

And still he parrots, but he can make his needs met and now he will initiate conversation.  He says hello to teachers and the nurses, and his caregivers too.  Now he is so much better at communication.

shoes on please?

He’s independent, too.  His life has routine, and ritual, and he’s surrounded by people who know how to teach kids like him.  I don’t know what I’m on about.

Off I go to breathe and eat.

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geek rock paradise

Posted in Anderson School, autism, grandma, singing, Uncategorized, tagged , , , , , , , , , on November 30, 2011| Leave a Comment »

I love Guster in the same inexplicably passionate way I love very few other things.  Laura Ingalls Wilder.  Elfquest.  My beloved books, some that I’ve read dozens of times.

I’ll never forget the winter of 2002-2003, the first time I heard Guster – in the car, rounding the bend of Buckingham Pond, on EQX: the song was Barrel of a Gun.  I forgot about wherever it was that I was headed and went straight to the closest music shop.  I didn’t know the name of the band or the song, so I sang it to the guy behind the counter.  “I have to have this,” I demanded.  He nodded in an okay, just please don’t hurt me way and, luckily, knew just what I was singing, so was able to provide my first Guster CD:  Lost and Gone Forever.  I’ve been hooked ever since and have, quite unapologetically, seen 9 or 10 shows now.

My ability to expound on Guster in an uncool fashion really warrants its very own blog, so I won’t torture you too much about it here.  Suffice it to say that I was incredibly excited to be able to see them 2 nights in a row, on Black Friday and Whatever They Call The Saturday After That, in Montclair, NJ at the Wellmont Theatre.

First, though, was Thanksgiving.  My mom, God bless her, made a whole dinner – some for M and me and some for Andy.  We drove down together to see Boo and bring him to Andy’s apartment, where we all had turkey sandwiches and black soda for lunch.  Jonah took his usual two baths while we were there…

Jonah, of the water

…and then we took Boo for his regularly requested car ride? and came back to the apartment.  My mom and I left after Jonah’s second bath and another request for car ride.  During car ride I asked Andy to put Guster’s Easy Wonderful in the CD player, and Jonah and I sang songs in the backseat, moving our clasped safe hands up and down to the rhythm, singing the oooo-oooo-oooo-oooo-oooo part of Architects and Engineers like two little grinning goofballs… Jonah bursting out in a laugh every so often.  He loves Guster too now.  Score.

I like to joke that I have a bachelor’s degree in Guster and am working on my Master’s.  I know to bring canned food and ping pong balls to their shows, and I know better than to try to win the “meet and greet the band” prize after the show.  One time when I set out to win (and did win, by bringing box after box of food) the opportunity to meet and greet the band, I brought them a gift bag full of cookies and goodies, a mix-CD, and a letter that undoubtedly said something very very geeky.  Brian-the-drummer came out first after the show, and tears came to my eyes.  I was barely able to choke out “Your music makes me so happy” before I abandoned all hope of appearing normal, shoved the gift bag at him, began to cry, and ran away.  Fail.

But the shows were both fantastic, each featuring a different song off their first album, Parachute.  They almost never play songs off Parachute live, and they said it had been something like 18 years since they’d played either song.  To those of you who may be reading and knew me in high school:  nothing’s changed.  I’m still the geeky girl.

So here are some pictures of the shows.  At one point Ryan put a disco ball on his head; all the lights hitting it made the whole place a big disco – always the whole band and crowd laughing, dancing, joyful, energized by some cool twist on every song.

Adam on the horn

Ryan singing and jamming

All the Gusters

…and Ryan with his disco ball head.

I want to bring Jonah to a show.  I hope someday I can.  If not we’ll just keep on singing Guster songs.

While I was in New Jersey I was contacted by A.H., another beautiful singer from Shaker High School.  She said that a group was getting together that night (Saturday) to reminisce about Mr. Fleischer – but I was a state away.  Shit.  I would’ve loved to see everyone (and beg two or three people to sing).  I am so touched by the comments my old peeps, and Ned’s old peeps,  have left me.

Lives intertwined.  It’s all so amazing, this world and how it works.

P.S.  Jack and Almanzo are buddies now.

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pioneers

Posted in Anderson School, autism, Uncategorized, tagged , , , , , , , , on October 17, 2011| 5 Comments »

Sometimes I joke that I’m not Darwin’s poster child.  I’m scrawny, kind of weak, hyper-sensitive, and rather meek.  I have asthma, osteoporosis and a mild case of Marfan Syndrome.  In any given room, I’m probably not the fittest.

If I’d been born in 1869 instead of 1969, I likely would not have lived through childhood.  Everyone who knows me well is aware I have a near-obsession with Laura Ingalls Wilder, who wrote the Little House on the Prairie series of books about growing up as a pioneer girl on the prairie.  Back then every family seemed to have a passel of kids and inevitably, two or three never made it past infancy.

Laura’s baby brother, Charles Frederick, died when he was 9 months old.  Laura’s only son, never named, was only a few weeks old when he died.  And Laura’s daughter, Rose, lost her own only son when he was just a baby.  Laura’s sisters had no children of their own.

The Ingalls ancestry ended.

Back then, if you made it past infancy, you faced a myriad of other killers like Scarlet Fever, blizzards blocking trains (fuel/food) for months at a time, grasshoppers and crows destroying crops – starvation and illness and accident.  From all directions death came at you, all the time – and your “job,” essentially, was to survive.

As medicine advanced, people lived who otherwise wouldn’t have before.  Simultaneously, the Industrial Revolution started long paths of both invention and innovation, but also of contamination and pollution.  The weak ones survived, Darwin be damned.

Maybe things like autism are the result of the “weak ones” not only surviving, but also being exposed to God-knows-what in the air, food, and water.  I don’t know if I’m talking nonsense or not, but I’ve been thinking about it all.

Seems to me we enjoy looking back arrogantly and laughingly at things we used to believe.  Can you believe we once thought the earth was the center of the universe?  That leeches could cure illness?  That cigarettes are good for you?  But now, we know better.  Right?  Probably not.  In 150 years they’ll be looking back just as disparagingly and laughingly at things we “know to be true” today.  We’re in the infancy of understanding autism, I’m afraid.  In some ways I’m as much a pioneer, like it or don’t, as Laura Ingalls Wilder.  Maybe that’s why I’ve always felt drawn to her.

Thus ends the preface of the story of Jonah this weekend.  His school had a “Harvest Festival” on Saturday, so my mom, my aunt, my cousin D and me headed down to visit.  What we didn’t know is that the last 20 minutes of the ride would take an hour and 20 minutes to journey.  There was a wool and sheep festival at the local fairgrounds, and everybody was headed for the herd.  It was interminable, the cars crawling like ants, people on foot passing us just like in the very beginning of Office Space.   At times I actually put the car in PARK.

Eventually we called Andy and decided to go separately and meet in Jonah’s classroom.  There we saw Jonah’s cool teacher, who told us Jonah was very bright; she gave us big piles of his art and worksheets.  He gets all the math correct, evidently, and can even write (with all the skill and care of your average physician).

Part of the harvest festival schedule was an invitation to view the brand new recreation center… which I guess we’ll have to check out some other time, because we were so late Jonah had already eaten lunch at the recreation center and was headed back to his house with T, one of his caregivers.  When we saw him, we overwhelmed him, I’m sure.

Daddy and mommy and grandma and Aunt T and D…all come to visit, all wanting hugs and kisses.

D hung back, smart and patient, knowing we ought not to be crowding in on him.  But damnit, I’m his mommy and I wanted to hug and kiss my boy.  At any rate he survived the converging mass and almost immediately asked for apartment (Andy’s place), so we walked to our separate cars and drove to the apartment, me riding with Andy and sitting next to Jonah.  We sang Barrel of a Gun and Keep it Together on the way, me reaching for his hand, he singing loud and right in tune, staring at me and grinning.  So far, so good.

At Andy’s apartment, Jonah stripped all his clothes off almost the instant he passed the threshold. 

Bath time!

Happily he gobbled yummy light green grapes, a sandwich, Lindt chocolates (only the best for grandma’s boy), and caffeine-free black soda.  Then he got all hyper and ran into the bedroom, jumping on Andy’s bed and shrieking as we tried to dry him off.  He put on his big-boy underwear and dressed himself almost completely, then requested car ride?

So we planned to take him to duck park, which I should add to the glossary, since he goes there a lot these days.  It’s a local park not far from Andy’s place. My mom and Aunt T and D followed Andy, Jonah, and me to the park.  But when we got there Jonah suddenly acted all panicky.  No duck park! he cried.  More car ride?

I recognized the ridiculousness of the other car following us around as we gave him a car ride and I came to the frustrating conclusion that this visit was over – without nearly enough time spent with Jonah.

So we left.  I drove us all home in the rain, crying for the first 15 minutes or so, quietly, my tears rolling unchecked to drip on my jacket and jeans.  After a while I stopped crying, it stopped raining, and we stopped at Love Apple Farm to buy home-made peach-apple pie and fudge.

Andy gave him his car ride and brought him back to the apartment and, eventually, back to his house at school.  It is always Andy who has to hear Jonah crying – sometimes asking for home – when he leaves his son behind.  Andy has a certain quiet strength and presence that belies the pain I’m afraid he struggles with a lot.

On Sunday at Andy’s, Jonah was very aggressive and really hard to handle.  Andy and I are both wondering what’s the right thing to do here.  Are we visiting too often?  Do we have to leave him be for a while so he can acclimate, even if  “a while” means a month?  I will call his behavior specialist tomorrow, and we’ve got a meeting coming up at the school about Jonah, but in the meantime I’m left to wonder if he’ll ever get better, happier, more self-regulated… more able to keep it together.

Funny how I wonder the same things about myself.

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lessons and blessings

Posted in Uncategorized, tagged , , , , , , , , on August 21, 2011| 8 Comments »

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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the rowers keep on rowing

Posted in autism, behavior, swimming, The Anderson School for Autism, Uncategorized, tagged , , , , , , , , , , , on July 27, 2011| 6 Comments »

There’s no earthly way of knowing… which direction we are going…” ~ Willie Wonka

Not only don’t I know which direction we are going, but I don’t even know now where I am.  I sleep as early and as much as possible – greedily falling into the cushion-y darkness where everything turns OFF for long, glorious hours.  I wake confused, then teary, and I gulp down the pills that help me through the day.  I’m just not hungry lately either.  It’s as if I got to an anxiety/fear point so high I smashed through its glass roof (Willie Wonka style, speaking of the great confectioner) and now I’m flying around grasping at different ideas, completely ungrounded, definitely dazed, and evidently, flaking out as well.

All these thoughts.  I decided I ‘m going to learn Spanish.  I want to visit Mansfield, MO, home of my beloved heroine, Laura Ingalls Wilder.  I’m going to read books even as an English major I’d never dared attempt:  Les Miserable and War and Peace.  I’ll learn to play guitar.  Write a novel, maybe even out of this blog.  Visit my relatives, send them all care packages.  Volunteer to read to kids at the library.  Walk dogs at the humane society.  Do yoga.  Learn to paint.  Anything, everything.  Something so I’m not nobody doing nothing.

Sometimes I have these grandiose plans to change the world, at least my world and the people in and around it, making positive deposits in the great big bank of karma.

But still I play out scenarios of the day we drop off our son, over and over, with different circumstances and outcomes each time…except he is always gone at the end.  In the scenarios we always have to go, we always drive away.  He is always, always gone, and he will be gone, and he will be gone soon.  No wonder I am meditating on impermanence.  I can’t really comprehend any of it.

Andy and I met with a mediator and we have workbooks to fill in, just like we did at the church when we were planning to marry.  Everything is cyclic.  We will wait until Jonah is at his new school and then we will re-convene, workbooks completed, bringing yet another thing to its conclusion.

My friend H (bless her) invited M and me and Jonah to her pool again tomorrow, thank you thank you thank you little H.  To her it may not be much but to us it is everything.  Yesterday M and I had to drive Jonah around the entire time we had him; there was simply nowhere we could go.  It poured rain and Jonah didn’t want music.  I got him singing at one point but then he started his repetitive requesting-phase:

Wannatakeabath?  Wannatakeabath?  Wannatakeabath? Bye Bye M.  Wannatakeabath?  Daddy?  Wannatakeabath? Bye Bye M.  Daddy?  Daddy?  Grandma?  Swim-pool? Swim-pool? Wannatakeabath? Wannatakeabath? Wannatakeabath? Wannatakeabath? (Insert BLOOD-CURDLING SCREAM instantly followed by giggling laughter).  WannaseeJack?  WannaseeJack?

And I curse myself for gritting my teeth and wanting to shout SHUT UP because soon enough I’ll wish I could hear his little voice, no matter what it was saying or shouting or screaming.

Oh, what a weird place in time & space this is.

“For the rowers keep on rowing,
And they’re certainly not showing
Any signs that they are slowing…”

~Willie Wonka

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