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Archive for the ‘autism’ Category

july 30th

Posted in autism, grandma, singing, singing, Uncategorized, tagged , , , , , , , , , , , , , , on December 26, 2011| 3 Comments »

On Christmas Eve I went with M to return a fixed computer to a man’s apartment; the guy had autism and softhearted M had done the work for free.  The man had all these vinyl albums hung on the walls, and each album had a painting or design on it.  In another room he’d constructed 3-D sculptures from popsicle sticks and fuzzy dots and crafty pieces of all kinds of things.

It was all very cool.  He had so many books and so much music.  Joseph Heller and J. R. R. Tolkien, Mario Puzo and Thomas Hardy.  His music was eclectic:  Eric Clapton, The Beach Boys, Gordon Lightfoot, the Soundtrack to Grease.   And he was very happy to have his computer back in time for Christmas.

He would ask random questions of us, and he could make good conversation.  I asked him if he had brothers and sisters, and then he asked me.  M and he were both the youngest, they discovered.  I  asked him about his music and books, and the artwork all over.  “Oh, yeah,” he said enthusiastically.

“Were you born on July 30th?” he asked me.  “1969,” he added:  statement, not question.

I smiled.  “No, but close.  September 2nd.  The 1969 part is right.”  Then I asked, “When is your birthday?”

As if thinking weren’t you listening? – he said “July 30th, 1969!”

I liked him.

While we were there his mother called.  Then he said his counselor was due to come over soon, so I asked him directly, “are we all done or do you need any more help?”

“Oh, yeah,” he said in the same enthusiastic voice.  “We’re all done.”

Good thing I’ve read The Speed of Dark by Elizabeth Moon, because I don’t have a lot of experience with adults who have autism, and that book helped me see things through his eyes.  You have to be pretty direct; subtleties and metaphors get lost.

That sounds like a Paul Simon song:  Subtleties and Metaphors.

Andy brought Jonah up to my mom’s house on Christmas Day and then kept him for a long time after that.  Jonah was very good at my mom’s, even though he paced a lot and wanted sandwich and bath and car ride in rapid succession, caring nothing for the presents.  He is indifferent to everything related to Christmas except perhaps the lights and songs.

Definitely the lights and songs.

I am kind of okay, but for a while I couldn’t write because I was re-visiting the necessity, safety and camaraderie of last year mid-December, when everything changed forever.   I love those peeps, even if I did only know them (in person) for 8 days.

Thank you to everyone who has written.  I just don’t get to my e-mail as much as I want to.  I read them but then I can’t reply.  I hate bitching about shit, and I’m always bitching about shit.  Today my mom and I spent hours sorting through like 15 bags of clothing into donation and keep piles for Jonah.  I was agitated and tired.

I wanted to clean today.  I cleaned and cleaned and organized and cleaned.  There is still too much.  I keep thinking of the man who was born on July 30, 1969.

It occurs to me that we are equidistant from Woodstock.

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closer

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

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

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

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

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

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

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

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

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

Sometimes he asks it two or three times.

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

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

my face against the window

beloved bath-time

swinging with his silly hat

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

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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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mourning mr. fleischer

Posted in singing, Uncategorized, tagged , , , on November 22, 2011| 23 Comments »

It’s Saturday afternoon and I’m on the train headed to NYC for an all-day Adoption Conference tomorrow, which I love.  I’m an adoptee who also understands the frustration of not knowing when (or if) something is going to happen, so I can relate to the people who attend.  I enjoy helping them, listening when they need it, and sharing their joy when they find a child.

I have a heavy heart, though, because yesterday morning I opened the Albany Times Union, and on the front page was an article about the passing of Ned B. Fleischer, my high school chorus teacher – the man who nicknamed me “The Winklett” at age 14 when I was a geeky, awkward, skinny freshman at Shaker High School, class of ’87.  I’ve been winklett everywhere ever since.  That article didn’t say how he died; another one only said he was “stricken.”  Stricken.  I wavered on my feet, shaking, put the newspaper down on the counter, and realized I’d been holding my breath.  Stricken.  Gone.

Frustratingly, there was no wake/funeral/obituary I could find, even though I called the reporter who wrote the article, hoping he’d have the contact number of someone I could ask.  I left a message for him to please call me back.  I’ve yet to hear from the guy, and that was Friday of last week.  Well who the hell am I, anyway?  Nobody.  Just one of hundreds – maybe thousands – who’d really appreciate a way to mourn a man who made a tremendous difference in their lives.  Before I left Facebook, I was in the “Ned Fleischer Fan Club” and understood exactly why everyone else was too.

Mr. Fleischer was one of those rare individuals you can’t pigeonhole or categorize (I can’t help but revert to what I called him when he was my teacher; I never could refer to him as Ned).  He was perpetually tanned – a swarthy, slight figure with an aura of mystique.  He could be peevish and moody.  You’d ask him a question and he’d nod and say “no” simultaneously, just to throw you off.  He had this uncanny way of figuring people out – discerning what he could expect of you and demanding exactly that, without cruelty or condescension.  High school kids’ egos are frail.  He knew not to crush sensitive youth but rather to build us up, through persistence and integrity and damn hard work – work to which he was unfailingly dedicated.  Equally dedicated because of it, we rose to his expectations.

He nicknamed us.  He reveled in the process of orchestrating a new combination of people every year – a new set of personalities and voices to blend into songs.  We gave him our all.  Something made us want to please him – perhaps the confidence he bestowed upon us as both trophy and duty – perhaps the way he’d lend an ear when you needed one, because he genuinely cared.  He was counselor and confidante to me more than a few times.

He’d sit with me in his office, cigarette lit in the ashtray, gifting me with his full attention until the cigarette had a four-inch ash on it because he hadn’t smoked it at all.  He was too busy listening.  Finally, he’d take a final puff, press it out in his glass ashtray, and utter something wise – sometimes soothing, sometimes not at all.  But after a talk with him, I always felt validated.  He made me feel like I was somebody.

Every one of us learned the language of his looks:  Sarcastic.  Angry.  Proud.  A heavy glance from him could mean anything from Nice pitch to Enunciate! or Smile!

To let him down was unthinkable.  It simply wasn’t an option.

While I understand his family’s decision to hold a private funeral, I know I can’t be alone in longing for a way to gather, mourn, and honor him.  So many of us loved him.  And while I respect Shaker High School’s request for mourners to refrain from placing memorabilia or candles, etc. on the school grounds, I long to return to the chorus room, sit at his bench behind the big black grand piano, cover its surface with flowers, and cry my eyes out.

I was lucky enough to sing in Melodies of Christmas all four years of high school; back then, it was always the Shaker High School Chorus who did Melodies.  Even in the subsequent years when they chose kids from various high schools to perform, Mr. Fleischer remained their leader.

During I think three of the four years we sang Melodies, we ended the show with The Halleluiah Chorus.  There was nothing in this world more beautifully fulfilling, more excitingly breathtaking than singing that amazing piece of music with a full chorus, orchestra, audience, and Mr. Fleischer’s let’s do this intensity at the helm.

The Halleluiah Chorus was a climactic apex of all the hard work, of months of singing-while-smiling, learning, laughing, memorizing, struggling – of doing it all over and over and over again.  Melodies of Christmas was a long performance in front of a live audience, 60 of us or so collectively standing tall and singing full, from the diaphragm, diction trained into sharp consonants and cool vowels, eyes and mouth smiling despite heavy red chorus robes under hot lights.  By the last song, Handel’s Halleluiah Chorus, we were exhausted…and yet exhilarated.   It was this final, from-the-gut push upward into flight – Mr. Fleischer in the lead, all of us lifting and v-ing out behind him on wings of The Messiah.  God it felt good.  Like magic.

To be honest I was a decent singer at best.  My voice peaked around age 10, then settled into a mediocrity which was on pitch, but breathy and limited.  Shaker High School had a special “select chorus” of 10 or so of the best voices in the general chorus.  Select Chorus had special rehearsals and performances, and we all wanted in.  I tried out too, auditioning for a position among the elite.  Mr. Fleischer never encouraged me not to, and he never implied I couldn’t do it, even though I knew I couldn’t.  With blind hope and stubborn persistence, I auditioned every year.  Though I did my best, I never did make it into the select chorus.

It didn’t help that two girls in particular, P.D. and A.E., both one year ahead of me, had voices like angels –and not only led the select chorus but won all the leading roles in every musical as well.  I couldn’t even be upset about that.  These were girls you’d pay money just to hear sing something.  Anything.  They really were that good, and were pretty and stylish too.  I envied them not only for that, but also for the extra time they got to work with Mr. Fleischer, who must have loved such incredible vocal instruments to shape into maturity.  I still think about them sometimes.  I can still hear their rich, clear, beautiful voices.  I wonder if they continued to sing.  I hope so.  Damn, they were good.

I went back to visit Mr. Fleischer only a few times.  He’d recognize me immediately, greeting me with a joyful shout — The Winklett!

I hope I can find out where he is buried so I can visit his grave, at least, just to sit with him.  I always took it for granted I’d see him again.  One more time.  One more visit.  One more Melodies.

Goodbye, Mr. Fleischer.

You are loved, and you will be deeply missed.

“Look around you. There is not a life in this room that you have not touched, and each of us is a better person because of you. We are your symphony. We are the melodies and the notes of your opus. We are the music of your life.”

~ Mr. Holland’s Opus

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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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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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smile for us both

Posted in autism, Uncategorized, tagged , , on October 13, 2011| 4 Comments »

“I want to be where I’ve never been before; I want to be there and then I’d understand…know I’m right, and do it right – could I get to be like that?  I don’t know and I don’t know; it’s harder every day.”

~ Two Points For Honesty, Guster

I just typed for an hour about an unkind co-worker and how much it hurts, and my psychologist’s cool “time-release therapy”… about my shifting perceptions of Andy and my parents…about experiences with them, trying to put it all into perspective and be at peace with everything my life is now.

Then I deleted every word I’d written.

I know who reads my blog and I’m not here to hurt people or throw them under proverbial busses.  I don’t want to be subversive or accusing here – especially when none of it had a thing to do with Jonah, who is doing very well at school and in his house, they tell me, by the way.  I’ll see him Saturday and I should focus on that.  Plus my dad gave M and me tickets to see a show Saturday night, and I’m supposed to meet M’s sister on Sunday, so that will be cool.  Focus on the good.  Accentuate the positive. 

Be grateful, you whining little crybaby.

I should start an anonymous blog and vent there about anything I want.  But this sure ain’t that place, so here’s a recent picture of a smiling Jonah Russell instead.

That’s right, Boo.  Smile away.  Smile for us both.

I’m going to bed.

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ten nine eleven

Posted in Anderson School, autism, grandma, Uncategorized, tagged , , , , , , , on October 9, 2011| 3 Comments »

I didn’t go to see Jonah this weekend.  Friday I took the day off work and caught a ride with some other folk to a friend’s son’s wedding in Brooklyn.  It was a beautiful day, & the wedding and reception went off without a hitch.

Strange timing, though.  Andy and I signed our legal separation papers on Monday.

Four days later I found myself sitting on a pew, in a big cavernous church, watching two people get married until death do them part.  I tried not to let it  make me all sad, or envious, or bitter, or any other dumbass emotion I’d have the tendency to entertain.

I forgot my camera, too, but I’ll share a cell phone picture of the reception table – lovely!

Anyway.

I miss Boo.  It feels too long for me to go two weeks without seeing him at all.  And when I call at night to see how he’s doing, he’s almost always already asleep.  It’s not like he’ll talk on the phone, and I don’t want the sound of my voice to upset him or start him pining for “home.”  Then again, I don’t want him to miss mommy and wonder where she is.  Of all the things I’ve had to kind of guess at with autism, this is one of the hardest.

Luckily Andy lives so close he can take Jonah to his apartment at least once a week, after the playground, then give him one or two much-enjoyed baths and feed him the “yummy-light-green-grapes” my mother brings along when she drives down every Saturday.

I think Andy actually visited Jonah three times this weekend, if you count tomorrow, because I think both he and Boo have the day off for Columbus Day.

Thank God and little baby Jason he’s down there, and has a bathtub and a big daddy heart as well to hold him close-by his only son.  I wrote Andy a Father’s Day poem a few months after Jonah’s autism diagnosis.  It applies to this day, for Jonah has been blessed with a fantastic dad:

Just Like Any Other Boy

You take your shirt off, hold me, newborn, to your chest,
your heartbeat drumming fa-ther, fa-ther, fa-ther –
and father arms, and unbelieving eyes, and warmth
so rocking, softly rocking, in your father arms I sleep.

You wear me in a baby sling, faced out so I can see.
You bend close to kiss my thistledown fine hair
and you are smiling, and jouncing me in jest, and singing
unashamedly off-key: the bear went over the mountain…

You see me spinning; hear me humming, seek a diagnosis,
your heartbeat drumming fa-ther, fa-ther, fa-ther –
now you hold me extra-special close, you whisper precious son
and place me before everything there was or ever will be.

You chase me on the playground past the toddlers who can talk
You bend close to kiss my thistledown fine hair
And I’m caught and tickled, giggling, just like any other boy
And you are smiling, and jouncing me in jest, and singing

You take your shirt off, hold me, two now, to your chest,
so rocking, softly rocking, in your father arms I sleep.
Your heartbeat drumming fa-ther, fa-ther, fa-ther –
You place me before everything there was or ever will be.

– – –

I, on the other hand, am maybe not so great a mom.  I don’t know.  I’m definitely not one of those born-to-be-a-mother moms who wanted three or four kids, special needs or not.  And mid-life has not increased my self-confidence in any arena.

I question my motives at every turn.  I require two different types of medication just to operate like a functionally employed human being, am falling far short of goal at what I’m paid to do despite my most earnest efforts, and wish only, really, to play the role of professional philanthropist.  I like people.  I trust them.  I’m a bleeding heart & want to help every cause that comes along.  Then when I’m inevitably betrayed in some small way I lose faith in humanity entirely…including faith in myself – as a mother, a partner, a daughter, an employee, a friend.

(I have a wonderful therapist and it’s obviously been too long since I’ve seen him).

It doesn’t help that it’s October ninth, my least favorite day of the year.  Ten/nine/eleven.  Nine years ago on this day my best friend Gina killed herself with a gunshot to the head.  I wrote ten billion poems afterward, like this one.  I guess I needed to, or I was going to go crazy.  Hell, I guess I went crazy anyway.

Every October 9th I buy a balloon, usually purple or blue, from the Party Warehouse, and I drive to Memory’s Garden, a park-like cemetery where Gina and I used to visit often to sit on a bench by a pond and talk.  Every year I go to the pond near the bench, I tell her I love her, and I let the balloon go.  Always she takes it quickly, removing it from my sight faster than seems possible.  This year the Party Warehouse gave me my dark blue balloon for free.  My God it was a beautiful day – 80 degrees, probably.

As usual, I released the balloon, managed to snap a picture of it with my phone (I forgot the camera again), put the camera down, and visually followed the balloon just above the tree tops until  POOF I couldn’t see it anymore, anywhere.

I’m sure the blue balloon on blue sky didn’t help me follow it up in the air, but I feel just as sure she got it.

Nine years.  Now she’s been gone just about as long as I knew her.  I hope all the memories don’t fade.

I can honestly say I’ve never been as close to another human being (except perhaps my son, but that’s a different kind of close) and I don’t anticipate I ever will be.  I’m blessed to have had that friendship at all.  Jonah was just 5 months old when she died, but I’m glad she got to see and hold him.

I ask her all the time to look after him.  Be his angel.  Keep him safe.  I wonder if this is delusion on my part, or if she hears me.  I’m pretty convinced she hears me.  I hope she comes for me when I die, and we can both look after Boo.

This concludes my stream-of-consciousness blog post for today.  I love bedtime, and am looking forward to waking up to a different day than this one.

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jonah’s best chance

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

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

Normal is a Dryer Setting – October 2011

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

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

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

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

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

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

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

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

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

 And, most importantly, for happiness.

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the trusting one

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

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

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

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

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

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

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

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

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

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

I miss watching him sleep.

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

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

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