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Archive for November, 2010

hope like this

I bought a brand new second pair of glasses on Saturday (in addition to getting my present pair fixed again) so I’m not at Lenscrafters in Colonie Center every other day.  They are beginning to know me by name, and I have to give them a shout-out for being so helpful and kind. I appreciate every friend who has called or texted me, every stranger who has reached out to me – even those with whom I do not agree or find unkind.  In Buddhism they say the people who are unkind to us are our greatest teachers, for they truly teach us compassion and understanding.  Not that I’m the wise woman on the mountain or anything, but I’m choosing to see it this way.

It is 7am and Jonah is laughing, and happy, and Andy and I are hoping the new med is helping him.  He has a good appetite and he actually danced into the bedroom just now to lie down with Andy and snuggle.  They’re in there singing their own weird version of “Yellow Submarine” and giggling away.

Even if it is for just this brief morning, I am so glad.  I’ll give him a big hug before I go to work, and I will have hope again that his day will go well, even if it is stupid hope, even if it is false hope, even if it means I am crazy to have hope like this, over and over and over again.

I love you, my sweet little boy.  If I have to go to the ends of the earth to figure out what to do to help you, I will.

Momma promises.

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part one:  black wednesday – I’m very glad I posted my giving of thanks when I did, when I had a minute to type between leaving work early and my dad’s arrival, before the deep descent, before I forgot to be thankful for anything at all in the midst of this maelstrom.  When my father came, we went together to pick up Jonah at the Center for the Disabled’s afterschool program; I walked in and knew immediately from the caregiver’s faces there was bad news.  He’d attacked the whole time…children, too.  The director essentially told us Jonah is on the verge of being kicked out of the program.

Deflated again, (how many times can a balloon be deflated before it is limp and dead?) my father and I each took one of Jonah’s hands and led him out of the building.  My father wanted to sit in the backseat with Jonah; I warned him strongly against it, so he sat in the passenger seat.  I don’t remember what the plan was but I knew there wasn’t much food in the house so I suggested we ride to Burger King and get food at the drive-thru to take home.

We got all set up in the kicthen with the food, and Jonah seemed fine.  Then he made the hand-swat motion, and I knew he was probably ramping up for an attack, but this truly insane hope rises in me every time right along with the panic, and before I could think another thought, he attacked full-force at my father,  knocking the chair over, scattering pickles and french fries and drink everywhere, my dad frantically wrestling him to the floor while I did my best to hold Jonah’s head down so he couldn’t bite.  My dad was bitten anyway, several times, then kicked hard all over his torso – I heard his moans and desperate pleas for Jonah to get off him, awful sounds I never wanted to hear – helpless groans, like we were being attacked in a back alley somewhere.

Finally I gasped to my father that he should get up and run away from Jonah.  He did, and Jonah went straight for me.  I ran into his room, knowing he’d follow me there, and he did, mangling my glasses, ripping at my hair, kicking and hitting and biting me — my dad came back in to try to help and Jonah beat the shit out of us both.  Finally I shoved Jonah toward and onto his bed, and my father and I got the hell out of the room.  Jonah’s room has no lock so my dad and I took turns holding the door knob as hard as we could while we looked at each other with terrified, disbelieving eyes.  Then we heard Jonah fling himself at the window, and SMASH SMASH SMASH he pounded his feet against it – thank God we’d had the Plexiglas installed – I opened the door briefly to check and see if he was okay, and in a rage he flung himself at me again.  I shut his door again and tried hard not to sob, scream, punch the wall, wail to the universe that I CAN’T TAKE THIS ANYMORE.  My dad, in a broken voice, agreed that we should call 911.  We were afraid Jonah’d pull the dresser over on himself, that he’d get out of the room and hurt us more, that we couldn’t care for him and keep him (or us) safe.

It was the fourth 911 call I have made in 4 months.  Then I called Andy, who came home from work.  He got there first, but shortly after that 3 Albany Police Department cops arrived, 2 of whom were kind but helpless — a third, Officer W, was just plain mean – accusatory in his manner and voice, as though we’d called them over for nothing.  “Why are you so unkind?” I asked him at one point. He left the house eventually and I talked to the other 2 cops.  “We don’t have anything we can do in this situation,” explained one of them.  “We can’t very well arrest him.”  No shit, but can you help us? The answer was no.  Nope, they couldn’t help us.  So the kindest of the three officers made a phone call somewhere and found out they could get child psychiatric mobile crisis involved, but last time that happened we ended up in the CDPC crisis center for four days.  No thank you.  So they left us, not wanting to meet my pleading eyes.  The cops left, and I sat there thinking my son beat up my dad and me and we called 911 to keep everyone safe and they could not help us at all.

Jonah had worked himself into an exhaustion and fell asleep in his bed, so my shaken dad finally left.  I wrapped myself in a blanket on the couch and stared numbly into space.  911 is a last resort, right?  A way to get someone to do something, finally, to help us?  A way to hook us into emergency placement?  A way to save our crumbling, threadbare, intolerable situation?

Wrong.

part two:  black thursday – I brought M to my mom’s for Thanksgiving, and Andy went to his parents’ house.  It was just the four of us, mom, me, M, and Jonah, at the Thanksgiving table, and Jonah was happily eating a buttered roll, when BAM out of nowhere Jonah attacked, sending dishes flying and grabbing my glasses off my face.  M pinned him down on the kicthen floor, but it took him ten minutes or more to get Jonah to the point where we could let him up, my mom could clean and pack up some food for us to take with us, and we could leave. I mushed my glasses into a semblance of shape and we drove away.

Later I dropped Jonah off at the house and to Andy (along with a piece of pumpkin pie from my mom), where Jonah soon fell asleep –and M and I ate our Thanksgiving meal alone in his small apartment, the two of us drained, shaky, and quiet.

part three:  a big fat friday of black – On Black Friday Andy and I decided to start investigating placement for Jonah.  I called OD Heck (what I thought was a local residential placement center in Schenectady) and was told there were no more children’s residential services there; they transferred me to an Albany office, some developmental disability place, and they transferred me somewhere else.  Finally I spoke with a kind psychologist from DDSO  (developmental disability services office?) who sympathized but could do little else.  Nothing exists to help us.  He thought maybe we could try the ER.  Then Jonah attacked, viciously pulling my hair and mangling my glasses again.  Andy pulled him off me and subdued him in his room, then called the doc and got into a fight with him because the doc wouldn’t help us by adjusting Jonah’s meds or dosage.  “Take him to the Albany Med ER,” he said.  So, having heard the same advice twice from two different people, we did.

I packed up a bag and Jonah’s accordion file folder full of information, and we drove ourselves to Albany Medical Center emergency room where they set us up in a room, took Jonah’s blood pressure and temperature, and listened to our tale.  “So you think he needs to be admitted?”  asked one young doc.  “Yes,” I answered, envisioning a complete work-op with an MRI and whatever else they do to rule out medical causes of behavioral aggressions.  Soon Jonah showed signs of agitation, so we asked for a sedative for him.  The doc came in with 4 other nurses; they gave him a shot of Atavan in his leg. About 10 seconds later came the attack, not a surprise to us, but the meds took so long to work that they all had to keep a firm hold on him for 10 minutes or so.

Even though Jonah became groggy, they expressed surprise that he didn’t fall asleep.  I lie in the bed and tried to get Jonah to snuggle with me and watch Back to the Future on the TV, but he was agitated and kept moving around sluggishly.  The mobile crisis unit came and kindly spoke with us, and it started to look and feel a lot like the whole CDPC experience.  They made phone calls and tried to find a place for Jonah but to no avail.  Albany Med would not admit him.  The doctor there would not adjust his meds.  “I don’t feel comfortable doing that,” she said.  Nobody does, apparently. I asked a few different people what would happen if I were all alone and Jonah tipped a TV over on me and killed me.  No one had an answer for me.  They simply didn’t know.

A kind nurse made Jonah some turkey-balloons out of medical gloves and he crouched in the doorway, playing with the balloons and pleading every few seconds to be “all done?”

Finally the doc conceded and gave us a script for Atavan in pill form to get us through until our appointment to see the child psychiatrist.  So 8 hours and $100 later we left the hospital with what our family doc could have called in over the phone to the pharmacy.  I drove to Lenscrafters (at the mall, on Black Friday of all days) to get my glasses fixed but they were so broken this time they had to give me a whole other pair of frames.  About four hours later, at home, Jonah puked and shortly afterward, he fell asleep.

NOBODY WILL HELP US.

Oh, the terrible irony of finally coming to terms with the fact that we may have to place him and then find there is nowhere he can go, nothing we can do.  I am so angry at a system that gives us no help and no answers and is apparently willing to wait until someone is seriously injured or killed to step the fuck in and DO SOMETHING.

It’s a black Saturday too, folks, but I don’t have it in me to tell that half-completed tale.  

I’m done.

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my thanks giving

Because I have become afraid to be alone with Jonah (rational or not), I’ve called my dad to ask him to please help me pick him up from afterschool, give him a ride to the train (depending on how we was at school today), and help with his dinner, a bath, and getting him to bed.  Andy is working and M can’t help me tonight.  It’s the day before Thanksgiving, so the short supply ‘o’ sitters aren’t around.  Luckily my dad is more than willing to help, and we got out of work a little early today (thanks MKR), so I have a minute to type.

God only knows what four straight days with Jonah will be like.  I don’t have high hopes, and I know I’ll be back soon to complain about how Jonah threw the gravy boat all over grandma at the Thanksgiving dinner table, so I thought I’d write a giving of thanks to balance out all the bitching.

In no particular order, and of course leaving out a multitude of blessings, I am giving thanks:

…for the fact that I don’t have to wait in line at 4am on Black Friday for the toy my child absolutely must have, or worry about whether or not I can afford (or should spoil my child with) whatever latest game system, i-pad, blackberry, etc. a typical 8 year old yearns to own.  I needn’t fret over whether or not to tell my child there is (or isn’t) a Santa Claus.  I won’t be standing in a long queue of fidgety kids and weary parents to get my son’s picture taken with a store Santa.  I don’t have to hear Jonah cry because he got picked to be an ox in the Christmas Pageant instead of Saint Joseph or one of the Wise Men.

Instead, I can wake up on Christmas morning and give Jonah an assortment of things like bubbles, straws, and balloons, and he’ll be happy as a clam.

Of course, my mom will compensate for my blasphemous lack of gifts by turning her living room into a toy store and presenting Jonah with a new winter wardrobe, several electronic toys, expensive musical instruments, a portable dvd player, and whatever Elmo is singing about this year.

I am thankful for pretty much everyone reading this (with the possible exception of Marcia).  There’s so much else and so many more people.  It could go on forever.  I know!  I’ll use pictures.  I wish I had a photo on my computer of my dad, and a few others I’d like to include in the thank-you album.  But here’s a little pictorial of gratitude at any rate.

I am giving thanks for:

hawks (i always say they are my gina, coming to say hello).  and

bright blue color filled autumn days. and

the rensselaer falls, my favorite nature creation spot.  and

M, my true friend and partner in travel.  and

my joyful bunny bopper boo.  and

the opportunity to walk where laura ingalls wilder’s husband spent his boyhood.  and

the wondrous beauty and stillness of deer. and

my three cousin-sisters.  and

my mom.  and

sweet random playground kids.  and

my witty and wonderful dear friend dimma. and

flocks of birds in flight.  and

the ocean, and the way andy and jonah and i all love it.  and

barkley!  and

mx & p yo.  and

rainbows.  and

silly D. and

silly jonah.  and

deep watery vistas.  and

sweet little h.  and

guster in concert!  and

my salespeeps K & Mg & B. and

jack!  (named after laura ingalls wilder’s dog) and

little bunnies (is it fiver?)  and

jonah & his grandma jane.  and

work fun!  and

snuggle hugs.  and

d & e.  and

the best pizza in town.  and

KP & little H, all together for a gorgeous wedding day.  and

b and v and their awesome green wall.  and

wig day.  and

the magic of water…

This year I have done a lot of things, enjoyed the company of many people, seen much beauty, and given not nearly enough thanks.

Thanks.

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It’s 7am and Jonah’s already attacked me – he asked for “train-a” (he’s been putting an “uh” sound on the end of a lot of his words lately) so I told him it was a school day but we could go to see the train after school.  This is a pretty standard conversation in our house so I didn’t expect it when he tore at my face, scratching me near the corner of my eye and mangling my glasses.  For the second time since I bought them on October 23rd, I’ll be at Lenscrafters today to get the glasses fixed.   I think I’m going to be their best customer.  Now the almost-brand-new glasses are really mangled – no matter how I try to push and pull them back into shape they sit crooked on my face.  I look and feel like a broken doll.

It’s “special persons day” at Jonah’s school which means both my mother and father will be there, and Jonah’s classroom is preparing a special Thanksgiving feast; I pray to God and little baby Jason that Jonah’s a good boy, at least for most of the time.

This past weekend Andy took care of Jonah (with help from my mom) while I went to NYC for an adoption conference for work.  Because I am adopted I especially enjoy talking to the prospective adoptive parents, agencies, and attorneys – I was an exhibitor at the conference because we facilitate adoption advertising, and because I did not have Jonah for a day and a half I enjoyed the guilty pleasure of freedom.  In addition to manning an exhibitor table, I was on a panel of parents who spoke about “raising a challenging child.”

All the other parents on the panel had adopted special needs kids – the kids had separation trauma, fetal alcohol syndrome, bipolar disorder, you name it.  One couple had actually adopted 15 kids (!), 3 of which they had to place in a home because of violent or out of control behaviors.  Jonah’s all I’ve got, and to place him is something so hard to comprehend that I’m wild to try everything/anything else we can, as quickly as we can, to seek another way.

Would I have deliberately adopted a special needs child?  My first reaction is to say hell no, but when I was pregnant I told God (naive little big-bellied me) that He could give me a disabled child or a gay child, that I would be okay with either.

My running joke now is that Jonah is probably both disabled and gay.

Someone I met on an autism group on Linked In sent me an obviously self-published book they wrote about their “journey home from autism” – and a children’s book they’d written as well.  Very kind, to send me the books for free, and I haven’t read them yet, but I’m going to use this as an opportunity to bitch that I’m tired of the whole Jenny McCarthy “you too can rescue your child from autism” schtick.    Most of the time I think these “rescued” children were mis-diagnosed in the first place.  I believe that 50 years from now it will be apparent that what we now call “the autism spectrum” is actually about 10 different things.  Jonah was unquestionably born with autism- our family physician noticed issues before he’d even had his first immunization, and in hindsight I can easily see how he was very different from neurotypical babies.  How can that be the same thing as the child who develops normally for however many months, gets a shot, and suddenly “falls off the planet,” losing all his or her social, verbal, and other developmental accomplishments?  It can’t. The symptoms might mimic each other but the underlying cause and condition isn’t the same.

If anyone had figured out a real, viable way to “rescue” these kids from autism, we’d all be on that fucking bandwagon, trust me.  But what works for one child doesn’t work for another, and the “here’s our amazing story of how we  pulled our precious child out of the bowels of the hell that is autism” books are a dime a dozen nowadays.  You can’t throw a stone at a bookstore without hitting something written by people who want to share the inspirational tale of tirelessly helping their child become “normal” again.

The parents of kids with autism don’t need to feel guilty about what the Superparents accomplished that for some unknown reason the rest of us haven’t been able to.  Since the market is flooded with these Superparent success stories, I think what parents need is for someone to write: this sucks, and I don’t know what to do either, and I’m trying hard, and I’m afraid, and I understand, and I’m in the same boat, in the same perfect stormI’m drowning too.

I understand.  I’m drowning too.

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Yesterday I picked Jonah up from afterschool program with more than a little trepidation.  Wednesday, you’ll recall, was hell, and for no reason anyone could figure…aggression after attack, all day long and home as well.  Andy came over to help me; he was there to get Jonah out of the car (which was very cool, because I’d about had it) and he was there when Jonah attacked again a few minutes later.

When I woke up Thursday morning I thought: which kid is the universe is going to hand me today? I guess Jonah’s like a box of chocolates: you never know what you’re gonna get.

sweet angel boy, playing in the bath

I admit I was a kinda gun-shy on Thursday when I picked up little Taz. And I was on target this time.  They told me he’d been in attack mode the whole time, right from the get-go when he came off the bus kicking and hitting.  I thanked them, apologized, and managed to get Jonah in the car without incident. He was safely buckled into his new 5-point harness contraption, but halfway up the first street there was a disabled vehicle and it gummed up the works for about ten minutes before we could get around it.  I guess he got impatient.  For whatever the reason, he started kicking the console, hard.  Bam BAM BAM BAM BAM, the whole time trying to reach me, stretching his body as far low and long as he could.  BAM BAM BAM BAM BAM until I thought he’d break his foot.  “No!” I yelled back at him, the traffic moving now, me dividing my attention between the road and my rising panic:

I’m in a horror movie and there’s a wild creature in the back seat about to escape his bindings.  I hear the unmistakable clicks of Jonah unbuckling the harness buckles, squirming around frantically to get at me: Houdini on PCP.  I’m having visions of Damien Thorn scratching and clawing at his mother’s face in the movie The Omen – and I’m approaching the intersection but Jonah’s succeeding, he’s getting loose, and the kicks are closer – BAM BAM BAM BAM – and I’m pulling my car seat as far forward as it’ll go, smushed into the steering wheel, thinking he’s going to get us killed, and all the while I’m yelling “No!  Jonah, NO!  STOP IT!”  at top volume.  I’m clawing around for my cell phone and I call Andy – thank God he was at the house – to tell him please be outside when we get there, ready to help me.

Then I turn down Euclid, round the pond, and we’re in the home stretch but now he’s really almost out of the restraint, expensive and sturdy as it is.  His seat belt’s still on, but that won’t last once Houdini escapes the harness, and it’s going to happen any second.  Luckily there are cars in front of me but not behind, so I hit the brakes harder than I need to, and it shocks him into just sitting there…but only for about a block.  So I speed up a little and he’s pushed back in his seat, unsettled again by the sudden car motion…but only for about another block.  I hit the brakes again.  Then speed up.  Then hit the brakes.  Then speed up.  In this ridiculous manner, I buck my way home, like someone learning to drive a stick and failing miserably.

The pendulum swings again today, with only two aggressions at school, none at afterschool, and none at home.  Now he’s asleep, and I’m here with my tea to tell the tale of Dr. Jekyll and Mr. Hyde.  Once again I am the grateful recipient of deliberate acts of kindness this week, including two delicious dinners, a box of peanut-buttery Do-si-dos (made all the more awesome because they’re impossible to find this time of year), and a day of almost-aggression-free Jonah.  Thank you.

I’ll take everything I can get.

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It’s always interesting and enlightening to me to review the old posts here; I feel like I should chart them – become scientist and statistician, calculating probable provocations and correlating causes.   Everything was going in the right direction, wasn’t it?  With minor setbacks, we’d come to a place where he was only (and I use that word with irony) aggressing one to three times a day.

Here I’ve just got to pause and mention (not for the first time, I realize, but it bears repeating) that I get the feeling when I tell someone my son had seven “aggressions” at school today, they are envisioning tantrums.  What’s the big fucking deal? I can almost hear them think.  It may be paranoia on my part, and I know I shouldn’t care either way, but sometimes I want to install a video camera and film the whole kicking, biting, thrashing, hitting, enraged scene sometime to play it back for the world. I actually felt vindicated when it took 4 grown men (3 of them cops) to hold Jonah down on the way into the CDPC crisis center that God-awful day, if only to prove I wasn’t such a pussy after all.

But why am I seeking validation in the midst of this mess?  Maybe because I am beginning to feel slightly unhinged.  I need something to count on, and everything that was solid has liquefied.  Every slope is slippery; every day a question mark.  There’s no consistency to his behaviors.  No reason for them happening today and not yesterday.  Or is there consistency and reason and I simply don’t, or won’t, or can’t see it?

I puzzle it out and puzzle it out but I have no idea.  I want a magic wand, not to wave the autism away but to make him happy again.

I should pitch this life to reality TV producers.  Come look at our crazy-ass household for one day. They’ll jump all over our three-ring-circus existence like white on rice.  CDPC and Four Winds, child protective services and separation.  Violent kid with autism.  Shitty diapers.  Meltdowns.  Mom sobbing.  Dad yelling.  And autism’s such a hot topic right now; it’ll sweep the nation.  I’ll be the new Kate Gosselin.  Ugh.  Somebody shoot me.

This morning Jonah seemed a little, well…squirrely, I guess you’d say.  He had a certain look in his eye I’ve come to recognize and almost fear; that boy communicates more with his eyes than anyone I’ve ever met before.  But I managed to get him fed and dressed and off to school, and I drove happily to work (will I never learn to keep my guard up, to expect a day of difficulty?), then missed a call on my cell from the social worker at Wildwood; she left a voice mail telling me Jonah’d had seven aggressions thus far (by 12:55pm) and did I maybe have some insight or did I know anything about him not feeling well?

I tell you my heart sank.  Seven aggressions?  Seven? So, what, do the meds just suddenly stop working?  Is he feeling sick and he can’t tell me?  (That thought horrifies me).  Is he scared?  Confused?  Does he want something he can’t communicate to us neurotypical folk?  All of the above?  WHAT?!

So I spoke with the social worker (no, I had no insight and no, I had no idea if he wasn’t feeling well), and Andy made a plan to meet Jonah at the Center for the Disabled right when the bus arrived to drop him off, and then take him straight to our house.  My boss allowed me to leave early enough so I could meet them there and Andy could still go to his night job.

When I walked in at 4:30pm, they were in the midst of an after-attack, which is visually similar to a town hit by a tornado, right down to the injured and shaken survivors.  We finally got Jonah quieted down and to bed, so Andy was able to shower and leave for work (late).

Our sitter, a great guy who teaches at Wildwood, came at 5:30pm; I paid him good moneycoin essentially to be an adult sane person to talk to for an hour.  Oh, and I also paid him in literature, compensating his company with a copy of The Curious Incident of the Dog in the Night-time.   Jonah had just fallen asleep when the sitter arrived, and I needed his protection to make sure the kid was going to stay asleep.

Even Andy said he never wants me alone with Jonah again.

That he never wants to be alone with him again.

So much for fine.

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“Played follow the leader
Keeping my steps in time
Counting on the wonder ahead
I leave the pain behind…”

~ Guster, Perfect

Yesterday = 0.0 (zero point zero) attacks.  Agressions.  Flip outs.  Whatever you want to call them, there were none!

Instead there was escalator fun, and we saw trains, and then Andy came and watched him lots, so I went escaped into the woods at the Grafton Peace Pagoda with my cousin B where we dug in the dirt, layed in the leaves, hefted rocks, molded birch bark around leaning saplings, munched on bagels with cream cheese, and sat in meditation in the beautiful temple. 

Thank you, God; I am good today.  People can come in to work and see me and they can ask me how I am doing and I can say I am doing fine and I can actually mean it. 

We are doing fine.

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