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Posts Tagged ‘Four Winds’

“You are always saying something
You swear you’d never say again…”

~ Fa Fa by Guster

Awareness is everything.  I too often play the ostrich, burying my head in the sand.  Not a good plan if you intend to see, or move, or live.  I have turned a corner, maybe, pushed gently but firmly into the light by my amazing friend R.  In part, he wrote to me:

You know damned well it’s the Key to the Garden 
To say, “yes”
To be silent to it, 
And by ‘it’ I mean everything. 
To witness preconceived…
To be the recipient of true mercy,
 
To repent to the beautiful,
 
To witness your own suffering from God’s embrace, 
Rather than punishing that very suffering, 
Locking it in the closet like some kind of monster.
And:
So too do we tend the garden of ourselves, 
We become the fountain
from which beauty becomes.
Open your mouth and pour forth.
The graying thorns push forth new roses.
So seemingly impossible it seems 
To disentangle from their clutch,
Without losing of the flesh, 
When it is merely a step backward,
A patient disentangling,
 
But Jesus H Christ it hurts.
And:
I could write inspiring and encouraging words, a pep talk Chicken Soup For The Soul, 
but I already fell into that trap.
 
I don’t have a fucking clue what it feels like to be you. 
 
Not a clue.
 
What the fuck do you know, R? 
You don’t know shit. 
That is so, that IS so.
 
I DO know that walking towards life is at once the brave path, 
And yet the only one that brings relief.
 
I do know that fucking much.
That much I do know. 

And so I answered “yes,” and something inside me woke up, and I am walking toward life, toward embracing life – all of it, even the suffering and pain – the helplessness and disorder.  At Four Winds they call it “radical acceptance.”
Because one of the things I never say here is how close I have been at any given moment to turning away from life completely.  How my bones feel like bars of a cage… how often I want to crawl out of my skin… how I feel utterly uncomfortable inside my body.  How close I come to running away in a literal sense – to driving until the gas is on empty and then curling up in a ball in a forest somewhere.

Yes, I know how ridiculous I sound.

I can change all of these things.  What you focus on expands.
It shall be an amazing, healthy, happy 2013.

And as if to drive this all home, Jonah was wonderful yesterday.  My mom and I risked the snow we knew was coming and drove down to Rhinebeck, luckily before any weather had started at all.
Jonah wanted grandma in the backseat and he proceeded to steal her gloves and wear them quite happily (which is funny because he won’t wear his own. Maybe we’ll get him a similar pair as these, which he loved and laughed about having “stolen” from grandma):
The satisfaction of a heist well executied:  pulling them on...

The satisfaction of a heist well executed: pulling them on..

Looking over to see her reaction...

Then glancing over to see grandma’s reaction…

I love how he looks like a little guru here, or as if in prayer...

I love how he looks like a little guru here, or as if in prayer…

Jonah sang and laughed and ate tune-fish-sandwich and chips and cranbewwy soda.  He took his bath and we went for car ride to transfer station (where you recycle).

My mother and I breathed a collective sigh of relief when we started home in the snow…we thanked God, almost in tears, for another good day, for a happy boy.

And later, having arrived safely home, I took a few pictures of the beautiful snow falling on my house and lawn.  I put Knockout Ned out there for the ScareMeNot Facebook page, so you’ll see him hanging from our lamp post:

???????????????????????????????

“And what you wished for could come true;
You aren’t surprised, love, are you?”

~What you Wish For, Guster 

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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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So it’s Thursday June 9th and I’m on a next-day deadline to submit my monthly column in the Capital District Parent Pages (though I’ve had a whole month to write it).

I’m sitting there thinking how strange it is that I write a column about a boy with autism who has become so violent we are planning to take him to live in a residential facility, and how the column is smack dab in the middle of a magazine featuring witty anecdotal tales of family life, articles about events, pages filled with fun places to take the kids, seasonal recipes, ideas for birthdays, and other parenting goings-on.  Sometimes I wonder why they even let me write the column.  I’m the bummer of the issue.  Hands-down.

And I’m thinking I don’t want to be the bummer of the issue this time (for the July issue).  So I sit there, and I sit there, but I don’t know what to write.

I haven’t even written here for a week.  How many times, after all, can you say the same thing with only the slightest of variations before you start to sound like a broken record?

It hits me that I could look backward, and so I write about times when he was a baby.

The words come quickly – it doesn’t take me long to finish.  They’re easier words because they are about the short span of time in which I had the same parenting experience everyone else had, more or less.

It’s not that Jonah has autism.   It would be fine, really, if only he didn’t get so enraged so quickly – become so unimaginably angry, so inexplicably aggressive.  Sometimes I feel as if I have done nothing for 41 years except bring a child into the world who is hell-bent on hurting others.  I almost can’t stand it.  I don’t want to stand it.  I want to stamp my feet like a small child and scream.

When I lean in to kiss him, more often then not I get scratched or grabbed by his whole hand on my face.

Einstein supposedly said that one definition of insanity is doing the same thing over and over and expecting different results.   Some think he himself had some form of autism, but whatever the case, I still will lean in for the kiss.  It’s not that I’m expecting a different result.  It’s that I need a different result – and if I can get his sweet little kiss one time out of five, it is worth the other times.  I just want to be his mommy.

I don’t know my son anymore at all.  I don’t know why he hurts me (or Andy, or his teachers, or anyone).  I don’t know how Andy is staying afloat.  I don’t know how one or both of us is not back in Four Winds.  I’m no good at this.  I’m weak, depressed, and always, always afraid.  And there we go, folks, the record’s skipping – – you’ve heard it all – heard it all – heard it all before.

And so you see there is very little I can say these days.  I apologize if you have tried to reach me and I don’t write/call back, or you invite me somewhere and I say I can’t go.  It’s not like I have a great excuse except I just don’t want to talk about anything to anyone right now.  And I’m sorry for it.

I am not strong enough to leave it all behind me whenever life calls for socially acceptable behavior.  I know so many strong, determined, one-day-at-a-time parents in worse situations who operate on such a higher wavelength than me – who don’t bitch, or complain, or let on to anyone that there is anything amiss at all.

That’s not me.  I never was the sturdy one.  I’m the cry-baby.  I’m the one who crumbles.

And thus concludes today’s whimpering.

“Dorothy moves to click her ruby shoes
Right in tune with the dark side of the moon.
Someone, someone could tell me where I belong;
Be calm, be brave, it’ll be okay…”

~Guster, Come Downstairs & Say Hello

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Springbrook called the day after we toured The Anderson Center for Autism and told me they were going to accept Jonah, in one of their brand new residences, most likely in November.  We took the placement; you can’t just stay on all the lists until the first placement comes up, so I had to call Tradewinds and The Anderson School and tell them to take Jonah off their lists.

Now it’s real, and I am a wreck.  I have researched and taken notes and gone into a state of mind where it is all objective – it was simply a project – albeit a difficult project – on which to work very hard.

Now the project is over and I am back in the subjective and it is real.

It is real and I have a countdown; it feels like the doomsday clock is ticking and I feel very very dangerously, frighteningly, frustratingly, ridiculously close to the day I admitted myself into Four Winds.

Somehow I have been shocked back into reality, where all this is really happening.  I really did fuck up my marriage and I really will give my son away soon and I really do feel like I do not belong in this world.

I have taken extra meds and I’ve got to be able to keep my shit together and get a lot done today.  I am thankful it is Friday so I can crawl home and cry when this day is over.  Jonah had 8 hard-core aggressions at school yesterday; it is not a matter of whether we are doing the right thing but rather how to actually do it.  My father has not seen Jonah since the day before Thanksgiving and it is because he is afraid of his grandson.

And now, suddenly, I have this near-constant tinny ringing in my ears and vertigo.  When I reach for something I miss it by an inch.  When I try to pour something I spill it.  I am spelling all my words wrong and have to go back and edit this over and over.  

I have a strange sense of not even being in my body. 

“We’ve colored in the lines and followed all the signs;
Fought a war till the war was over…
Said you’d never be the kind with an ordinary life –
Now this how it feels to have a broken heart

Look at the mess we made
Now we stopped and we say what we always say
And then you make the great escape

With every year you’ll come to regret it…

~Guster

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Saturday night after several trips to the safe room, the staff (and the drugs) finally calmed Jonah down.  Someone set us up in the Children’s Waiting Room; at least we were the only ones in there.  The room had a supply of children’s videos (mostly Disney, which Jonah doesn’t really like)  and a TV and DVD player.  They brought in a cot for Jonah to sleep on, and I slept on a 3-foot plastic-covered love seat pushed against the wall.  Luckily I had Jonah’s overnight bag already packed from our trip to the respite home, so I had a supply of diapers, wipes, and some extra clothes.

On Sunday morning M stayed with Jonah so I could drive home quick-like to shower.  While I was gone, a doctor, two med students, and a social worker came in to see Jonah.  They asked if he wanted to take a walk down the hall (both of which sides ended in a locked door).  He said “walk hall?” in his innocent, groggy voice and then they walked him down one end of the hallway.  M followed at a distance, wary of what might happen.  Sure enough, out of nowhere Jonah attacked, grabbing first the glasses of the doctor and scratching her face, then going after the med students and the social worker — hitting, biting, scratching, the whole works.   It took all of them plus M to subdue and hold Jonah down, keep him under control, and get him back to the safe room – then, eventually, back to “our” room.

So we spent most of Sunday on chairs in the hallway like sentries outside the bare, windowless Children’s Waiting Room. Meanwhile, Jonah slept inside on his cot with his blankee, sweaty from the exertion and the meds.  Our nerves shot, we were actually afraid to be in the same room with him. I’d thought to bring along a small supply of one of Jonah’s favorite things – colored straws – and he slept with them clutched in his hand.

For hours that day M and I sat in the cold, bare, too-bright hallway.  Every time we needed to use the bathroom, we had to knock on a door and wait for someone to come out, unlock a door at the end of the hall, and stand with their foot propped against the door until we came back, after which the door would be shut and locked again.  Every time we wanted to leave the building, same thing.  Knock on a door and wait for someone to come out and lead us down the other end of the hall and out 3 different sets of locked doors until we were in the blessed fresh air, only to drive to Stewarts or Subway quickly, grab food, and return.

All this time the social workers and doctors were trying to figure out what the hell to do with us.  Things never happen quickly (if at all) in hospitals on weekends, and crisis intervention wards are much the same.  Sunday passed slowly, without much news.  Four Winds wouldn’t take him because they had no beds – and besides, he was deemed not verbal enough to participate in “therapy sessions.”   The hospitals in the area wouldn’t take him because he was too violent and would need one-on-one care – even though I promised to sit with him 24/7.  Respite homes were called.  Residences.  Institutions.  Always there was a reason he couldn’t go to one of them.  He was too young.  There were no beds.  He was too violent.  A permanent placement home was suggested, but I’m not ready for that drastic a measure yet.  We just started him on meds, for fuck’s sake.  You can’t just expect me to place him in a home without trying other options.

We hoped for better news on Monday.  Sunday night a doctor came to talk to me who I immediately liked.  When he heard how long we’d been waiting in that same room for something to happen, he was appalled.  He thought Jonah needed to be hospitalized to rule out medical causes of the sudden, violent, seizure-like behaviors.  And he thought Jonah might be experiencing something called “steroid psychosis” from the Reticert implant in one eye.  (Jonah needed an eye operation back in February to save the sight in his left eye, and they’d replaced the lens and also implanted the Reticert device which time-releases steroids locally to the eye itself).   But even though it had been in place for months, doc said, the steroid psychosis could happen at any time.  The doc went to investigate and we were hopeful that this would be the thing that could get us on the path to getting out.  A few hours later he came back to report that he couldn’t get us into the hospital and that his theory about steroid psychosis proved unfounded.  And because he was just the night doctor, he soon disappeared.  That night M slept on the cold floor between Jonah and me, just in case Jonah decided to attack.   And anxiously we half-slept, our bodies on an auto-alert for one of Jonah’s furies.  Jonah woke at 3am, agitated and confused, and I knocked on the staff door to request more meds to quiet him again.

I kept family and close friends informed by text; on more than one occasion people brought food and treats to the door, where I’d come out to meet them like a prisoner or cave creature and then secret myself away inside again.   My mom and aunt ran to the store to buy some of Jonah’s favorite Barney and Thomas the Tank Engine DVDs.  Once a day or so I’d ask to be let out of the building (they’d only let me leave if someone was there to watch Jonah, and thank God M was there for most of the time) and I would pace the grounds, crying.   I’d almost always call someone, usually my dad, just to vent.  I can’t believe there isn’t anywhere for us to go, I kept saying.  I’m so tired.  I’m so scared.  I can’t do this anymore.

This whole time, of course, other incoming crisis patients were being questioned in interview rooms just feet away from us.  One guy kept telling the staff to stop experimenting on him.  Another complained that his mother wouldn’t let him use her pots and pans to cook.  A teenage girl walked by with something like pride, sporting a bloodied shirt and bandaged wrist.  An older, obviously drunk man shouted obscenities and demanded that they not throw him out on the street “like last time.”  We found ourselves alternately horrified, curious, saddened, and eventually even entertained by the parade of folk coming in over the course of our long stay.  By Monday afternoon we half-laughed that the psych ward was our new apartment.  We watched The Wizard of Oz three times and picked at the food they offered us once or twice a day.  Our backs ached and our minds reeled and our nerves were strung like piano wire as we waited and waited and waited.

All day long on Monday, whenever Jonah wasn’t medicated or sleeping, he cried and whined.  “Car ride?” he begged.  “Wan go see train?”  Then:  “Home?”  Over and over and over he begged.  “Grandma’s house?”  “Daddy comin’?”  M and I tried to placate him.  “Number one, doctor.  Number two, car ride!” we’d say.  Or:  “Home tomorrow.”  When it got too much for me to listen to Jonah’s incessant pleading, I’d ask to be let outside again where I’d take deep breaths of air, pace, cry, and pray.  Please help me.  Help my little boy.  Please.  Please.  Please.

One social worker tried hard for two days to get us in somewhere.  She kept hitting roadblocks, and eventually started calling in a wider and wider radius outside the Albany area in her search.  There was talk of places in Rochester – New York City – even Boston – where Jonah would be admitted and I could stay at a Ronald McDonald House.  I panicked, thinking of the work I’d miss and how incredibly far away I’d be from M and all my family and friends.  Torn between desperation and an ever-increasing need to get the hell out of CDPC, I awaited some news.  Any news.  There was nothing.

Finally a fantastic social worker from Wildwood came to help.  She started advocating for us and demanding answers.  CPS set up another team meeting (the one originally scheduled for 9am in downtown Albany) at 1:30pm on Tuesday, providing something else didn’t open up for us before then.

It didn’t.

By the time they came to get me for the meeting, my mind was made up.  I’d had enough:  we were leaving, no matter what I had to do.  The sensory deprivation alone was probably damaging all of us — especially Jonah — by then, and I wanted out.  During the meeting, attended by representatives and caseworkers from Wildwood, CPS, CDPC,  OPWDD, and other acronym-laden places, I announced this in no uncertain terms.  “We’re going home,” I stated flatly. Everyone got a chance to talk, and brainstorm, and the events since Friday were related, but mostly I got placed on a lot of waiting lists for different support services and respite care places.  My dad spoke up at one point, saying he loved Jonah dearly but his main concern was for me.  “My daughter can’t take much more of this,” he said.  “She’s done an incredible amount of legwork and research, and she is a strong, smart woman.  But if she’s not assisted, how can she help her son?”  I was flattered at my dad’s view of what I regarded as merely surviving, and was recharged anew to insist we go home.

In fact I used the room phone right in the middle of the meeting to call my family doc and ask for a prescription of the meds.  Then I told the people assembled that I would continue to pursue medical answers for Jonah on an outpatient basis, and I would wait to hear from several interested respite sitters from Wildwood School, plugging them in wherever I could.  I think those assembled were relieved.  I don’t know how long they would have kept us in a holding pattern at CDPC, but after three nights and three days of it, I simply couldn’t take it anymore.

After the meeting, I went down to the cot where Jonah was sleeping and I gently woke him.  “Guess what, bunny?”  I said brightly.  “We’re going home!”  As tired and groggy as he was, Jonah shot right up and parroted “home?!”  So we packed up all our accumulated crap and got he hell out of there.  We went to see the train and we visited grandma and we ate spaghetti and meatballs.  We even slept in a bed (oh, the sweet glory of a bed) for the first time in four nights.

I sent Jonah back to school on Wednesday, using the day to make phone calls to ten thousand different people and agencies, seeking respite care so I could make it to work when Jonah had a day off from school or was on a break.  I don’t know when Andy will be able to have supervised visits again, let alone unsupervised – and I have three important business trips coming up in November to try my damnedest to make happen.

Jonah struggled behaviorally on Wednesday but did better today.  And no aggressions at home at all, thank God and little baby Jason.  Now I have to fight our insurance company to prove this is a ‘qualifying event‘ to get him back on my plan so he can see all the docs he needs to see who won’t take Medicaid. (I’d set him up two years ago on the Medicaid waiver for individuals with disabilities, not realizing I should have kept my primary insurance in place for him as well).  And I need that respite care, stat.  I have another thousand calls to make tomorrow after doing a hundred things today (calling the Albany Autism Society, picking up Jonah’s eye drops, new meds & diapers, pestering Catholic Charities, and even speaking with Michael Carey), and now I’m geared up for a fight with the insurance company.  I will be at their office in person first thing in the morning with an appeal form all filled out, ready to advocate for myself and my son.

If our situation isn’t a qualifying event, dammit, I don’t know what is.

This is getting downright ridiculous.  How did everything go so haywire in such a few short months?  It’s as if I started this blog with perfect timing to provide my readers with a front-row seat for this train wreck of my life.

I actually have to remind myself to breathe – and there are times I am so exhausted and dispirited, I don’t even want to anymore.  Some people say I am strong but I’m not strong.  I haven’t lifted anything; something has been placed upon me.  I haven’t held up under pressure; I’ve yielded to tears and self-pity and weakness.  And worst of all, I haven’t accomplished anything more than arranging for stronger meds and places on waiting lists.  It isn’t enough.  Our entire existence depends on my job, and I have to protect our livelihood.

I’ll do just that tomorrow, dammit, or die trying.

– – –

Thank you to everyone who has written or commented with suggestions and support.  I hear you, and am grateful.

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on the ocean

On the ocean
I think we’re taking on water…
the storm is on the way,
but I will hold on anyway.”
~ Guster

This is a ridiculously tough post to type, so please forgive any type-os.  I doubt I’ll be editing this one.

I’ve got enough of my mom in me to want to avoid “airing dirty laundry,” as she would put it.  But we’ve reached rock bottom here and I should at least explain why I haven’t been around to post.  Because I just put Jonah to bed and don’t have enough energy to tell the whole tale, I’ll present a Reader’s Digest version of our tumultuous time on the ocean…

This past weekend Jonah had a very rough time behaviorally.  A VERY ROUGH TIME.  On Saturday he threw a toy from the backseat and hit Andy in the head while he was driving.  Andy’s response was way over the top, without a doubt inappropriately so, and I had to take Jonah away from him.  After going back and forth with Andy over the phone – I wanted him to take a break and leave the house for a week or so; at first he refused – Andy decided to check himself in to a hospital.  This was Monday, I guess.  I am so frazzled.  I forget what happened which day.  I don’t know what order things happened in, or how we got here, or how this is became my life.

Jonah continues to be in “random attack mode” and since Monday I have gone into “taking care of business” mode.  I have taken many steps to mitigate the behavior and ensure our financial, emotional and safe survival, including applying for home behavioral support services, getting Jonah on a low dose of clonodine, arranging for a special harness seat on the bus, making a myriad of appointments and phone calls to schools, doctors, agencies, and coordinators to arrange for services so I can still go to work and care for Jonah as well…

…things I took for granted are now huge considerations.  How to go to the grocery store.  How to go to my therapy appointments.  How to sleep.  Eat.  Breathe.  Remain sane.

I’ll go into award-show mode now.  I’ve won nothing but nonetheless am on the podium and have just been called to give credit to those who so deserve it:  I couldn’t have gotten through this weekend without my cousins D and B, who dropped everything to stand by me & get me through this; they’ve helped with Jonah, incurred injury after injury from his attacks, and pulled me up from the waters that threatened to drown me.  My mom has offered her home, also suffered injury at the hands of my out-of-control son, and come to my aid to help even when I am stark raving bitchy.  My dear friend M has stuck by me through so much – rearranged his whole schedule to ensure my safety and ability to cope.  My dad has been very supportive.  My boss has been fantastic.  My friends are caring and there if I need them.  My cousin Brian is ready to jump to help me with whatever I need.  Even the people I supervise at work.  I am grateful.  I am grateful.  I am so incredibly grateful.

This is a trial by fire if there ever was one.  Andy and I had already decided to separate, but I hadn’t said anything just yet; now I may as well tell that too and get it all the major shit over with in one post.

Sorry if all the dirty laundry is stinking to high heaven.  I hope the meds and behavior supports and whatnot serve to bring my sweet boy back.  I hope Andy is getting the care he needs and is okay.  I hope I can keep it together.

If you’re the praying sort, I could use some of that.

We’re staying afloat…

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