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Archive for the ‘grandma’ Category

eye hurt?!

Posted in autism, doctor, grandma, hospital, singing, tagged , , on March 18, 2012| 4 Comments »

I’m tired, and a little sick to my stomach from thinking about the pain my boo will be in – again.  After the first eye surgery was the first time in his little life that he’d verbally expressed pain.  “Eye hurt!?” he cried, more beg than announcement.  Help me.  Do something.  Why do I feel this way?  And we, helpless, holding him, rocking him, offering him pain meds that obviously weren’t working well enough.

Yesterday my mom and I drove down to see Jonah.  We cycled through our routine – sandwich, bath, barbecue potato chips, black soda (or sometimes, now, cranberry juice), cookie.  Jump jump jump on the bed. Car ride.  “Daddy in backseat?” asked Jonah, but I can’t drive a stick and I wasn’t about to put my mom in arm’s reach of my volatile son, so Jonah had to settle for mama.  On the ride he sang with me and then stared out the window, sucking his thumb two different ways:

Then we drove to the park, and visited the ducks

and he got to swing on his favorite swing

then on we drove, down to the river, where the train tracks run

Jonah and his dad watching the waves from the wake of a ship

When we were done there Jonah wanted another bath and The Wiggles, so we drove back to the apartment…

And all the while he seemed fine –but then he puked.  My mom and I cleaned it up while Andy did the bath part.  I am going to talk to the nutritionist ab0ut the possibility of stomach troubles with Jonah.  He’s been throwing up kind of a lot.

He did very well for his rheumatologist appointment on Friday.  Thank God it was indeed E and J again who drove him up to Albany; I guess it will pretty much always be them.  You don’t know what it means to me to have them.  I will never forget their kindness, to me and to my boo.  Their ability to keep track of everything, keep Jonah busy, keep everything together –it’s all so awesome.  I know I say this over and over but I can’t say it enough.

Still,  I’m not at all looking forward to tomorrow.

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every new normal

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

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

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

How is this okay?

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

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

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

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

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

The soft request:  home?

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

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

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

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

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his boy elroy

Posted in Anderson School, autism, grandma, potty training, trains, Uncategorized, tagged , on February 20, 2012| 3 Comments »

Jonah and Fearless Fred.

This picture was taken a month or so ago, during the only snow we’ve really had.  A few inches, once or twice.  And remarkably warm.  Spring birds are singing.

I have not been here because I’ve been here, and here, and though I do love to write these things, sometimes I wish someone would pay me to write blog posts instead.  I have ideas for things I’d like to attempt.  A novel.  A memoir in blog format; basically, this blog (so as not to require any work on my part except to edit/proofread and ask an agent to read it).  But I’ll take what I can get.

Jonah was so good on Saturday.  Andy was kind enough to drive him up to grandma’s house, where I met them and we commenced to have circle pepperoni and bath and car ride (complete with perfectly-timed and very long train).  Jonah was hyper but happy.  I gave him a bath by myself (usually Andy does this), and we made a fine mess in the bathroom, splashing and laughing and getting bubbles everywhere.  He went to the bathroom like a big boy (it’s hard for me to believe I’m writing that about a boy who is going to be 10 on March 7th).  He ran, soapy and dripping, past my towel and into the front guest bedroom, where he jumped up and down on the bed and I jumped up and down on the floor, timing my jumps to his, and the both of us laughing and yelling Jump! Jump!  Errry-body jump!

I love Boo so much.

We have Fun Fridays once a month at work now, and they are fun.

I have joy in my life and I feel happiness again, though tomorrow would have been Sanx’s birthday (her 38th? I’m not positive).  And Gina’s been in the Times Union‘s big investigative report about NXIVM, and that’s all kind of crappy.

I also thought of the coolest band name ever:

His Boy Elroy

I shouldn’t have told you.  Now you can steal my coolest band name ever.
Take it!  Somebody steal it!  I should google it and see if it’s already been done.  Probably. Let’s see…

Yes!  Shit.

I think this picture was taken last weekend.  I’ll never tire of taking Jonah’s pictures and then looking at them later.  I’ve been sending more postcards and letters and little packages to him. 

I miss my boy and this is my way to be closer to him.

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christy lane, loud & really freaking clear

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

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

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

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

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

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

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

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

I listened.

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

dad offers a grape

Good thing Patty has multiple eyes

Good thing Patty has multiple eyes!

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

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

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

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

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

Mama loves you, little Boo.

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

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

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fearless fred & jonah russ

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

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

Nothing can stop her from visiting her grandson.  Nothing.

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

“Stop that,” said M.

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

Here are some pictures from our adventures today:

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

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

Jonah and Fearless Fred, making friends…

Then it was — you guessed it –bath time!

…and more fun with Fearless Fred

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

Jonah wanted to take Fearless Fred on our snowy walk.

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

and hang from branches…

and climb twisty vine-embraced trees.

Show off!

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

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

Then again, there’s always tomorrow.

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

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

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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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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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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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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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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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