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Posts Tagged ‘the grateful dead’

If your head tells you one thing and your heart another,
before you do anything, you should first decide
whether you have a better head or a better heart.

~ Marilyn vos Savant

Undoubtedly my heart is better than my head, but I’m not sure if that’s saying all that much.  Oftentimes I extinguish the embers attempting to flare into emotions simply because I don’t want to feel those emotions.  And other times the embers are fed by a circumstance or song, and they flicker and come aflame unbidden…causing anything from tight-jawed pain to tremendous joy.

Yesterday Jonah was a happy kid.  My mom waited in the car while Andy and I went to the residence, and Boo was standing excitedly by the front door.  I had brought his “octopus” with me, but a small red-headed boy hugged me and held out his hand for the toy, so I dropped it in his palm, smiling as he ran off happily to play with it.  Jonah didn’t mind, and I can always buy him another.  Jonah’s more concerned with where grandma is, and whether or not there will be delicious things to eat.  We went into his room to gather a windbreaker, and another kid came running in to jump & land on Jonah’s bed.  Another kid was in Jonah’s window because he loves to look out at the playground. Party in Boo’s room.  Jonah tolerated it nicely as we apologized for the handfuls of hair incident from the other day, and asked about his morning (which, they told us, was good).

The caregivers who had endured Jonah’s attack were kind, smiling and telling us Jonah is good far more often and causes smiles more than frowns.  My heart swelled so that tears came into my eyes.  Also he has been doing something new; whereas he used to take his shower and go straight into his room to lie down, now he is coming out into the main living room area to walk circles or sit on the couches with the other kids.  I am glad he seems to be moving toward some sort of socialization, even if the kids can’t really talk to one another (Jonah is one of the most verbal) and don’t actually play with one another in a traditional sense.

He can easily outrun me to the car (Andy could probably catch him, but I just started walking and running, and I tire easily).  There he found his precious grandma, but wanted mama in backseat?  After I’d gotten in the car and Andy had gotten in the driver’s seat,  Jonah turned to me and said “need help?”  I asked him what help he needed and he pointed to his shoulder.  I noticed Andy had forgotten to secure Boo’s harness to the clips on the back of the seat and I secured each clip, in awe of Jonah noticing this mistake and actually asking to be strapped in more securely.  I gave him a ScareMeNot and he stared out the window, watching for deer and the ducks in the pond as we drove off the property and to Andy’s apartment.

I'd brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window...

I’d brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window…

(This was supposed to be a photo of Jonah kissing Valiant Valerie, but the camera was still set on video, so it’s a one-second video instead).

After lunch and a bath, Jonah asked for grandma stay here? and Andy and I brought Jonah to transfer station. I’d queued up Guster’s Easy Wonderful CD but Andy asked him if he wanted Gunther or radio.  Jonah chose radio, which slightly annoyed me because I know Jonah loves Guster and would have been fine with it if we’d just put it in.  Andy calls Guster Gunther because E (who comes with J to bring Jonah to most of his doctor appointments) always calls them Gunther by mistake.  Music on the Top 40 radio stations all sounds the same to me.  I guess I’m a music snob.

Were I in charge of the music my boy is exposed to I’d play all kinds of different stuff, including Guster: all the Beatles CDs, some traditional children’s songs, Marlo Thomas’ Free to Be You and Me, Elton John, Kula Shaker, Crosby Stills Nash & Young, Billy Joel’s Glass Houses, songs from Sesame Street, Mozart & Tchaikovsky, 80’s pop music, They Might Be Giants, Simon & Garfunkel, the Grateful Dead, the Hilltop Hoods….all kinds of different things.  And I’d never, ever, ever, ever, ever, ever, ever play that dumb Taylor Swift song.

I suppose it doesn’t really matter, so long as he’s not listening to Gangsta rap or death metal.

Jonah’s like me in that his hair grows fast, and already he needs another haircut.  We’d like them to give him a buzz cut at this point, for it is getting to be warm, and that way it’s out of his face and will grow back in soon enough.

I’m anxious to take Boo on walks in the woods, push him on the swings, watch him dive into the pool, smile at his widened eyes when train comes toward us and passes by.  I want to take him to a Guster show and not have to leave.  I want to be with him on the beach, watch him cavort in the ocean and run barefoot along the jetties.

Yesterday M’s daughter J was here; we held hands and ran together to the park, where we kicked and bounced a beach ball around, and went on the slide together, and chased one another, laughing.  M and Jack-dog followed behind while J and I goofed around on the playground.  Later we walked, just J and me, to Stewart’s, where I let her pick out ice cream and a surprise snack for her daddy.  I looked around me and realized people figured I was her mother.  For a moment I knew what it was to be in public as “the mother” of a “normal” kid.

It felt, well….normal.  Which in my world is pretty damn strange.

I have two blooming multicolored tulips in my yard now, and I’ve re-stacked my stone cairns.  Time to oil my Buddha tucked into the bushes out front.  Time to make nature pictures in the woods.  Time to rejoice in the springtime.  May 1st is coming – my favorite day of the year, because it slams the door on winter with the satisfying sound of finality, and who doesn’t love that?

“Ha ha ha ha
People are laughing
Children are singing
Come join the dance

And the walls around us
Which we kept at such a cost
When we turned around
Came tumbling down

Ha ha ha ha
She can’t stop laughing
He can’t stop singing
First day of may!”

First Day of May by James Taylor

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“If you can’t make it better, you can laugh at it.”
~ Erma Bombeck

There remains inside me, despite every effort to squash its useless purpose, an ugly envy when I see beautiful photos of families – husband, wife, child/children, smiling, caught in a snapshot of happiness.  The knowledge that these parents may tuck their little ones in at night, or cheer them on at sports games, or watch them proudly in the spelling bee.  The realization that they have the opportunity to guide and teach and comfort their kids, to gather together in their own family unit, tucked into time itself with undying memories.

Of course this is foolish, imagining idyllic problem-free lives.  It is never so.  Behind every smile is pain, and in every life falls the rain of sorrow.  Yet I have but one child, too far away from me, and I am unable to guide him anywhere against the wilfulness of autism itself which cages him in its unrelenting grasp.  Jonah’s father is gone from me – and as necessary as it was, it is too often cause for feelings of inadequacy, of failure, of loss.

The mornings are hardest.  Awakenings.  In sleep we are all embraced by the quiet wellspring of a dark, unknown possibility and promise. Saturdays are question marks, when every week my mother and I punctuate the ride to Boo with silent queries and fervent prayers.

When we first picked him up at his residence, he was happy and excited.  The caregivers told us he ate two breakfasts and was behaving well.  He was calm on the ride to Andy’s apartment.

Jonah and his "octopus."

Jonah and his “octopus.”

Just a few days ago I phone-conferenced in to his IEP (individualized educational plan) meeting.  I heard encouraging news about his progression in verbal communication – he is learning to say “I like” and “I see” (etc.) to begin sentences, instead of just “I want.”  He is not yet generalizing this beyond the classroom, but I am confident he will.  They tell me he is most anxious (and therefore likely to aggress) when he is in large crowds or feels encroached upon by someone sitting too close – which is most likely why he only tolerates anyone in backseat for the short duration of the ride to Andy’s apartment.  Often he will ask for daddy in backseat, but I can’t drive Andy’s stick shift and neither can my mom.  I suppose I should learn.  How hard can it be?

They told me he has a rash on his penis which they are treating, and they are beginning to recognize it as a recurring cyclic seasonal thing.  He will have been there for two years in August.

The mind reels.

This last Saturday brought change, as Saturdays often do. He ate lunch on his garbage can perch, and had his bath.

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Whereas usually Jonah will ask for mama to ride with daddy to transfer station, instead he held his palm up to me when it was time to go.  No mama, he declared.  Mama stay here.

I smiled weakly and stayed behind, briefly playing with Andy’s landlord’s kids, Manny and Isabella.  They are cute kids, and Andy’s landlord looks like George Clooney:

I call him George

I call him George

Sweet Isabella with Protector Patty, a ScareMeNot.

Sweet Isabella with Protector Patty, a ScareMeNot.

I pulled Andy’s copy of Clan of the Cave Bear off his bookshelf and read a few pages about Brun and Broud, Creb and Ayla, until they all returned.  Jonah came flying in the door, and my mother and Andy said he did not want to come back to the apartment at all.  He wanted park.

We were all glad, since usually he only wants car ride. But once again he wanted no mama.  My mother felt so bad for me.  “Mama is coming too,” she told him.  “No…no,” he answered.  My mother decided to be the one to stay behind anyway, and I brought along some root beer for Jonah to sip in the backseat of the car, as incentive for him to let me come along.  He was not appeased.

OLYMPUS DIGITAL CAMERA

“I hold it,” he declared as soon as he was strapped to his safety harness.  Andy opened the can and poured most of it into a cup, which he gave to me, then he handed Jonah the small can with just a bit of soda inside.

Laughing, Jonah chucked it at us, splattering the dash and control panel of the car’s radio.

sticky mess

sticky mess

I cleaned up while Andy removed Jonah from the car and took off his harness, telling him “You blew it.  No park.  Quiet time.”

looks like an arrest

looks like an arrest

After this we went back inside, where Andy and I got Jonah to lie down on blue bed and each of us lay on either side of him.  He was quiet for a few minutes and then turned to me and held out his little hand.  I kissed his palm.  He lifted his leg out from under the covers and I held his little foot and kissed a toe.  More kiss?  he wanted.  Of course more kiss.  I kissed each toe, his ankle, his fingers…the softest place on his neck.

“I love you,” I  whispered.  “I love you.”

And then it was time for my mother and me to drive home.

Yesterday Andy asked me to play an online Texas Hold’em poker tournament he had won an entry into but could not play (actually he’d had to place high in several tournaments to get into this one).  There were 750 people in the tournament and nine prizes, the top prize being either $2,000 or an entry into the World Series of Poker in Las Vegas (which usually carries a 10k entry fee).  After two hours of playing I came in 6th place and won a whopping $40.  I do like to play and am fairly good at it.  It was a fun distraction to my weekend.

The world events of this past week are a shadow-cloud over my microcosmic thoughts.  Too much too much.  My therapist tells me not to listen, but it is impossible not to hear.  While I was sitting on the steps outside his office the day before, reading and waiting for my appointment, a blonde woman with a gold cross necklace asked if I minded if she set her coffee cup down.  I told her it was not my building and even if it was, of course she could.  We chatted a bit as she pulled out a cigarette and lit it, telling me things about herself – she was from NYC.  She didn’t like Albany.  She had been mugged twice.  A man from the Troy Record newspaper approached us to do a “man on the street” interview about the Boston marathon explosions.  I politely declined, but the woman was all excited to talk and have her picture taken for the paper.

“It’s those damn Moos-lums,” she declared.  “We have to ship them all back to their own country.  (And what country would that be? I thought to myself).  “It’s going to keep happening,” she added with certainly, pointing her cigarette at the dark-coffee-skinned interviewer.  He grew visibly uncomfortable and told her he could not use her comment about the Muslims.  She was unhappy about this, accusing him of being part of the liberal media agenda.  When she walked away, he and I talked for a bit.  I could tell he wanted to interview me instead, and again I declined, saying “I think it’s sad that the only time we seem able to be able to come together in solidarity is when there is terrorism or disaster.”  He nodded in understanding, and I stood up and went inside.

Boston.  Texas.  Seattle.  Denver.  China.  India. Japan…North Korea…etc. etc. etc.  The suffering is everywhere now, every day.  If nothing else, it helps remove the envy I spoke about at the beginning of this post, replacing it with gratitude and sympathy.  God help us all.

“One way or another, this darkness got to give.”  ~The Grateful Dead

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Something woke me up early Friday morning.   I don’t know why, but I sat at my computer at 6am and read the news on Yahoo.  One person, standing in the front of a movie theater and opening fire.  I actually got chills.  It struck me harder than any other school shooting or killing rampage of late (and there have been plenty to choose from, no shortage there).  A brilliant man.  A brilliant, likely schizophrenic man who decided to do this unimaginable, horrible thing.

As I read the news I realized I’d been holding my breath and I thought Mark and I were just in a theater in Denver to see Guster with the orchestra and when I let that breath out I wept like my heart was broken.  I don’t want to live in a world where things like this happenI want off this planet.

But when I got to work, P put me straight with the perspective I needed, God bless her.

“How many people gave money to the bullied bus lady you told me about?”  she asked me.  I understood what she meant.  The good outweighs the bad – and by a lot.  It does it does it does.  She kept my mind from spinning off into a dark place.

See how much kindness phoenixed from the ashes of the bullying.  See how much good there is.  See that.

It has been a better day today, though I have to consciously embrace the belief that the Universe knows what It’s doing and I have to hang around and do what good I can for as long as I can keep it together, for my son, for his school, for kids with autism, for lots of reasons.

Jonah was a joy today!  It was a lovely day of sunshine and everyone had fun.  Of course, as soon as lunch and bath were done, Jonah wanted to go to the river.  On the way he pulled apart the sensory toy I’d just given him…one of those rubbery, squishy, nubby things.  This one was a caterpillar, but Jonah called it octopus.  He named the colors of each segment correctly, then yanked the pieces apart, turned them inside out, and tossed them around the car gleefully.

Down at the dock by the river, there was a washed-up, rather large dead fish, partially eaten away.  Jonah wanted to investigate and we quickly ushered him away from it.

You can see the big dead thing in the lower right hand corner of this picture.  Just after I snapped this, he pointed to it and announced, “broken fish.”

Yeah, you could say that. 

I love my Boo’s nomenclature.

He wanted to sunbathe on the dock ramp.

See how his feet are all turned in?  That’s his mama all the way.

YAY!  Water boy swims again.

Tonight my dear friend R is coming from Japan; I’ll pick him up in a few hours  at the train station when he gets in.  I’m fixing up a room for him, and he bought a guitar to use and have here in the US (he’ll be here for a month) before he goes back to Japan, where he teaches English.  It was delivered yesterday, and I can’t wait until he feels rested enough to play some.  I always beg him to play New Speedway Boogie, and though I have it on tape, nothing beats a live performance.

“One way or another, this darkness got to give…”

~ New Speedway Boogie;  The Grateful Dead

P.S.  I am on Rosetta Stone learning my Spanish for at least 1/2-1 hour a day now.  It’s really hard; they push you right along.  I keep repeating lessons.  I’m determined though, now.

Hablan a español o morir en el intento.  (Yes, I had to look that up.  I’m not that far along yet.)

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“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.”

~ The Wheel by the Grateful Dead

I’ve probably quoted that before in this blog.  A funny fact is that I’ve never read my blog straight through from beginning to end.  I could be repeating quotes, stories, ideas…hell, all kinds of shit.

Well it appears our 15 minutes of fame are over.  Jonah’s been swept off the top ten stories of HLNtv.com by famous people and real news. And here I’d dreamed of some publisher happening upon our story and offering me an advance of $25,000 to edit the blog into a book…but not a one has materialized, thus far.  Heh.  I did, however, connect with all lots of amazing new people. People just like me. And supportive souls. And adults on the spectrum.  We’re all in a magical, leaky, strangely expanding ship – the S.S. Autism.

The whole experience, though, was a jolt of affirmation I really needed.  (I thrive on affirmation; it’s damn near Pavlovian).

The thing is someone gave me a chance to tell my story, and I’m grateful for that chance. Thank you, KC.

But the wheel turns, and comes a time for things I don’t want to think about.  Jonah’s first visit to a rheumatologist in this area on Friday, and, on Monday, exploratory eye surgery. I pray to God those same two awesome people who drove him up last time, E and J, will be there.  With them everything will be okay.  It will be okay if Jonah kicks and it will be okay if I burst out sobbing and I don’t have to worry about keeping it together because they will help, they will know what to do and what to say and how to navigate the whole mess.  They have compassion and knowledge and heart, these people.  They love.  Thank God, they love.

Because without them I’d fall apart again. I can’t stand the thought of Jonah scared. In pain.

I remember holding him in my arms  for his first eye surgery, when they implanted the Retisert – how he looked at me with this deep, intense fear in his eyes as I placed him on the operating table…how I watched him go limp-that-looks-like-dead as the anesthesia took effect.  I kept it together long enough to look the surgeon in the eye and whisper “please help my son.”  She held my gaze and promised me, silently, nodding.

I remember closing the door and flattening myself out against the coolness of the wall on the other side.  Telling myself to breathe.  To trust.

Throughout these last ten years I have entrusted my child to so many people.  I am so lucky, so grateful.  I trust and I trust.  To do anything else is to deliberately envision (create?) a worse reality. At least with trust there is hope.

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

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I’m told that someone once asked the Buddhist Monk Thich Nhat Hanh to explain Buddhism in one phrase, and he paused and answered:  “everything changes.”

Several things are changing now, actually.  Got very good news about my position changing at work (in a way that I am very appreciative of and happy about) and also have an appointment this morning to visit St. Colman’s residential educational placement school, which is only about 10 minutes from my home, as opposed to the 4 or 5 other residential schools we’re applying to, which are all at least an hour away.  It would be so much nicer to be able to see Jonah pretty much whenever I wanted, and I hope the tour goes well and they have a place for him.

When I was in the hospital, the nurse who handed out meds had seen my file and knew my story.  She told me that she doesn’t usually share personal information with patients, but that she had placed her son (who also had autism) at St. Colman’s when he was 7.  Now he is 21 and about to age-out into an adult home; she had nothing but wonderful things to say about the place, how far he had come, how wonderful the staff was, how much she appreciated everything they had done for her son.  I swear everything happens for a reason.  It is no mistake that I met this woman.

On Wednesday Jonah had 9 aggressions at school, and Andy picked him up early to take him to the doctor for something the nurse said was patiki eye…tiny dots on his left (bad) eye…the redness was traveling down his face and the nurse was concerned.  But they never made it to the doc; Jonah attacked in the car halfway up the Northway and Andy called me from his cell phone and told me to cancel the appointment; I could hear a struggle in the background and sighed.   When I went to the house after work, Andy wasn’t up to reliving the details – Jonah had fallen asleep by then and his face did look a little red but he didn’t seem to be in any pain, so Andy said he’d try to take him again tomorrow if he needed to.

Yesterday there was no call from the school nurse, but Andy’s car broke down on Colvin Avenue, which is about 3 miles from our house.   He called AAA (thanks, dad, who always gives us each a membership for Christmas) and then had the car towed to a nearby repair shop.  He called me to tell me what had happened.  I asked if he wanted me to come pick him up but he said he was going to go for a walk anyway that day, so he walked home.  Just one more thing to deal with.  The big property tax bill came too, and now a car repair.  Good thing neither Andy or I really mind not having much money.

Then Jonah’s log book said he’d had 10 aggressions that day- 9 at staff and one toward a peer.  This frequency is as bad as it was before we started him on medication, and I’ve become almost numb to this kind of news.  It only serves to make me feel sorry for Andy, for the people at Wildwood, and to underscore the necessity of placement.  It gives me an all over, bone-deep, constant anxiety that feels like a new kind of normalcy now.  I’m on anti-anxiety meds but I find myself wanting to mainline them straight into my veins – to sleep, perchance to wake with life as it was 8 years ago or so – a small but comfortable house, a sweet beautiful baby in my arms, a happy husband to come home to me each night after work.

But everything changes.  The wheel turns, and those squashed at the bottom will rise again.  I just wish the wheel would turn a little faster…

“The wheel is turning and you can’t slow down,
You can’t let go and you can’t hold on,
You can’t go back and you can’t stand still,
If the thunder don’t get you then the lightning will.

Small wheel turn by the fire and rod,
Big wheel turn by the grace of God,
Every time that wheel turn ’round,
Bound to cover just a little more ground.”

~ The Grateful Dead

For my peeps at the hospital, wherever you are — for everyone reading this, leaving comments, praying for us, thinking of us, calling me, sharing your own stories, expressing your compassion, wanting to help — I thank you.  It means more to me than you will ever know.

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“What a long, strange trip it’s been…”  ~ The Grateful Dead

If there’s one thing I’ve learned this past week, it’s to never say you’ve bottomed out…’cause there’s always more bottom beneath the ‘bottom’ where you think you are.  There’s always more edge to the cliff you think you’re hanging onto.  At least there was for me.

Let’s see if I can account for the time I’ve been gone.  On Friday at 1:30pm we had a team meeting at CPS office downtown; M watched Jonah for me while my mom, my dad, Andy, me, and various representatives from Jonah’s school and benefit offices met to brainstorm options for my family.  After more than two hours it was determined that I could place Jonah in respite care for the weekend – a private home where a local couple would care for Jonah from 10am Saturday until about 7pm on Sunday.  Then, so the plan went, we would meet again on Tuesday (the 26th) to determine a more long-term course of action.

On Saturday morning I was nervous but I dropped Jonah off at the private home as planned, where this very kind lady took Jonah’s overnight bag, booster seat, his special ‘blankee’, some of his favorite DVDs, and my list of instructions and details.  The lady and her husband take in foster kids all the time, including developmentally disabled and fetal alcohol syndrome children – in fact they had 3 or 4 of these kids in the home when I came – and she assured me that Jonah’s violent behavior was nothing she couldn’t handle.  Jonah took to the environment gladly, not clinging to me or seeming upset when I left, which made it easier.  I thanked her, she hugged me, and I left.

I whispered a Hail Mary under my breath and headed straight to Colonie Center mall with M to get an eye exam and new glasses at the one-hour shop.  Because Jonah is always grabbing at my glasses I figured I could use my old pair as a spare.  I bought two pair – one regular and one sunglasses – and then M and I ate in the food court.  The whole time I felt very strange, not needing to worry about running out of time before I had to pick Jonah up, and I kept fighting the urge to call and see how he was doing, even though it had only been 2 hours by then since I’d dropped him off.

After the mall M and I headed to the grocery store to shop.  Halfway through the store my cell phone rang – it was the lady providing respite care.  She explained I’d need to pick Jonah up – that it wasn’t working out.  They’d taken a car ride in their big van to ‘leaf peep’ when, without warning, Jonah launched himself at their foster child, an infant with cystic fibrosis, and scratched his face up pretty bad.

Four hours, he lasted.  Four hours.  Shaking, I hung up, purchased the groceries in my cart, and headed over to get him.  I apologized profusely to the woman and was heartsick at the sight of the baby’s scratched and bleeding face.  I gathered Jonah’s things and signed some paperwork while M put him in the car.

Then we headed to my house, but before we got there, Jonah attacked again from the backseat.  He couldn’t reach us but I was a frazzled mess so I called Four Winds to do an over-the-phone pre-intake screening, an option that had been mentioned at the CPS team meeting on Friday.  They told me there were no beds but my case would be reviewed on Monday.   “But what can I do until then?” I asked, desperate.  They told me to call Mobile Crisis, so I did.  Three policemen and a caseworker from CDPC  (the Capital District Psychiatric Center) showed up about 15 minutes later and we got a police escort to their crisis unit.  When they got Jonah out of the car to walk him inside, he launched an attack so violent it took 3 policeman and M to hold him down.  Four times he attacked before they could even get him in the door.  Like someone on PCP, my 55-pound boy kicked, bit, scratched, and fought with superhuman strength.  Finally they got him into the ‘safe room’ (literally padded with rubber walls, with only a mattress and blanket inside it) and dosed him with some Risperdal.  I held it together for a while and then paced the halls, crying in anguish and frustration and helplessness.

Jonah in the safe room

We literally lived in the Children’s Waiting Room of the CDPC crisis unit for the next three days and nights.

Part two to follow…

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