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Archive for March, 2011

I carry my camera almost everywhere I go, so it was on hand today when I went to check the mail and saw three tiny, miraculous patches of what I think are crocuses.  Here’s one of the patches, pushing out of the brown, dead, winter-packed ground.

According to the weatherman, by Friday night they’ll be buried beneath a blanket of snow of as-yet undetermined thickness.

I don’t mind.  It can’t beat us down now, can it?  At least not for long.

It might do those crocuses in, though.

Yesterday Andy picked me up at work and we went to the meeting at Jonah’s School with the people from Springbrook, who had evidently arrived an hour or so before us to observe Jonah in his classroom setting.  I guess he did pretty well while they were watching him and attended to whatever task he’d been given, with just a small swat thrown in for good measure.  We stopped at the nurse’s office to sign permission for them to give him ibuprofen for his leg (he’s been limping a little on and off lately, something else we have to get to the bottom of)…and in the hallway there lingered the unmistakable aroma of poop, courtesy of our beloved child.

At some point, evidently after the Springbrook people left the classroom, Jonah either needed or requested the safe room and then decided to shit, dig around in his pull-up, and retrieve some of his freshly-pressed play-doh to smear on the walls.  I’m not big into text-speak but WTF?

We got the big-time aggressor.  Can we at least not have the shit-smearer too?

So while they cleaned him up and kept him occupied, Andy and I met with Wildwood staff and the Springbrook folk in a small office and they asked us questions about Jonah and we asked them questions about Springbrook and at first they kept directing all their questions at me

funny how people automatically turn to the mother for the answers about a child

and I told them Jonah was living with his father, and Andy was articulate and honest in speaking to them, and I emphasized how hard this was for Andy, and they nodded a lot in empathy and understanding, and I told them we liked their place best, we think

and I asked if they would tell us if and how and when they would take our son to live and be educated and nurtured and please love him some hour and a half away from us because we can’t do this thing anymore

and we never thought this would happen to us

and we feel torn and confused as hell,  sometimes guilty and often frightened, usually stressed

and almost always anxious

but they have to go back and have a committee meeting and they’ll probably be contacting us by the end of the week to let us know

and then we all shook hands and smiled

and Andy and I got back in the car.  I asked him if Springbrook accepts him, is that where you want him to go? and he said yes and we were quiet mostly as he drove me back to work.

As I walked up the stairs to my office, they were just about to sing happy birthday and serve goodies to the two March birthday peeps.  I smiled and dug into my cake with the rest of them, allowing the worry to fall behind me.  It’s something I have learned how to choose, a defense mechanism in my brain keeping me sane and functioning.

I usually can shed intrusive thinking like a dead skin; I’ve been led to understand that all that matters- all that can matter – is right now.

The end of the week will come, and they will either take Jonah or they won’t, and if they don’t, he’s been accepted at Tradewinds, and it will all happen the way it is supposed to happen whether I worry about it or not

in this soon-to-be-snowy shit-smeared spring of ours.


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We had taken Jonah off all the meds completely and it lasted about two days before Andy decided to put him back on the Risperdal; I’m calling the psychiatrist today to advise him.  We were not exactly thrilled with the effect of Risperdal on Jonah but my God, keeping him entirely unmedicated is definitely not the answer.

Off all meds, Jonah turned back into the boy who drove us to the psychiatric center in October, constantly swatting, alternately laughing and crying, able to play and sing but also vicious in his ability to ramp up from 0 to 100 in 0.2 seconds with no antecedent whatsoever, hurting Andy, hitting and throwing things.

I think Andy was ready to go berserk, and maybe still is, but this weekend we were lucky enough to have my cousin D come to help us, 4 hours each day.  We we able to pay her well (thanks for a respite sitter grant from Catholic Charities)  and I came over too to help out.

Both days we mostly rode Jonah around while Andy rested, took walks, went grocery shopping…  We managed him okay, though he did try to attack us – but D knows how to hold kids with autism and other behavioral problems – she works with kids at the Center for Disability Services – so I felt safe and had an awesome person to hang out with while we were spending time with Jonah.

Lately Jonah’s been asking for waterfall and signing it too, so on Sunday…

(after we cleaned up the coffeepot and grounds from the kitchen floor that greeted us when we arrived; Andy had Jonah on a time-out in his room for throwing the whole works, so it gave us time to put things back in order – this is the point at which Andy decided to medicate him again and gave him a Risperdal pill)

…we drove him out to the Rensselaerville Falls even though there is still lots of snow there and we couldn’t walk all the way down to the falls.  He loved it!

With big cousin D:

Then we took pictures of the falls, where a whirlpool spun these circles of ice in an ever-rotating pattern that amazed us!

Of course on the ride hom he threw his shoes, his drink box, and his peanut butter roll at us, but we got home safely and uninjured.  It was a better weekend, probably for all of us, than we’ve had in a long time.

Thank God.

Tomorrow Andy and I have a meeting at 2pm with the folks from Springbrook, who are coming to Wildwood to observe Jonah.   I am nervous about the appointment but also glad we are closer to figuring out a good, safe, hope-filled education plan for our little boo…

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Here’s the thing.

It’s not the one day of attacks, or the one incident of aggression; it’s the accumulation of day after day after day of the same thing, the same attempts to quell the behaviors that end in failure after falure, the same silence that falls on a situation we’re in – a cage, prison walls, something inescapable that has now become our “normal.”

Yesterday at school Jonah went to the safe room three times, and all three times he pooped and smeared it all over the walls and himself.  They cleaned him up as best they could while he fought them, then he cried and cried, and finally tried to run out of the building (a new trick for him).  The undoubtedly underpaid workers at Wildwood are angels and saints.   

Here’s one of his speech teachers, teaching Jonah about emotions and asking him to mock her facial expressions while they watch themselves in a mirror.  This is from June of 2010 – they are doing “excited” – I love this picture:

When I got out of work I went straight to the house and Jonah wanted a car ride.  As expensive as gas is, it is worth it to us when he is good on the rides (we have no idea why he was such a hellion in school and then was so much better for us at home)… Andy sat in the passenger seat and we drove over to the Voorheeesville Stewarts to get Jonah a peanut butter roll and visit the train tracks where we saw two trains, which this time neither excited nor annoyed him.  He was good, so we kept riding.  And riding.  We’d ride around forever if it meant our boy would be calm, and happy, sucking his thumb and looking around contentedly.  This kind of silence is welcome; we let Guster play on the CD player and drive along without speaking much.

We’d give anything to take away whatever anxiety or fear or confusion or pain that’s inside him.  It’s the accumulation of days, now, that piles on, swaying and unbalanced – and apt to fall at any time.

Thank you to my commenters, who always encourage and support, inform and try to help.  I appreciate you all more than you know!

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hold it

Hold it. This wasn’t the way it was supposed to
pan out, we both flattened beneath a spinning situation
ironed hot, scorched and out of orbit.

Am I dreaming first your stay, then mine –
clay-making, group, meal-lines like college, the
potent connections made in all those suffering days,
the way the womb became a mother-cushion?

Hold it.

Hold on. This is what I tell you. I see you suffer,
breathe, clutch, push time along to sleep, placing
facts upon a high shelf where they can’t be reached
without standing on the steps.

So stay seated, both
hands inside the vehicle, a ride dizzy but hopefully quick.

Hold on.

—–

There is no normalcy in any day, in anything Andy does, in anything surrounding Jonah, in anything at all.  Through the inconceivable notion of placing Jonah comes an urgency to place him – a sense of time ticking, of there being only so long we can collectively do this thing, keep going, keep everyone safe, keep holding it together, keep hanging on.

The doctor appointment yesterday was awful.  It didn’t start out that way.  Andy picked me up from work and we collected Jonah from school without incident, but on the ride to Clifton Park we passed the exit where grandma lives and Jonah started to ask for grandma and white soda over and over with increasing urgency.  We told him yes, Jonah; later, boo, and ignored it when he hit the back window with his palm. 

Andy dropped me off first to see if the doc was on schedule – they said he was, so Andy and Jonah followed shortly afterwards, walking in just as the nurse was calling his name.  First he was okay; the nurse put the blood pressure cuff on and Jonah said arm squeezy – he knows the deal with that – then she asked us to get Jonah undressed.  We did, and he paced the room in his pull-up, lifting the blinds, walking back to the corner by the door, walking back to the blinds, saying all done at intervals – but then he slowly started to fall apart. 

By the time Dr. Pascual came in and wanted Jonah to lie down so he could listen to his heart and belly, we had to hold Jonah down on the table and he cried, frightened, ramping up for aggression-time.  Then Andy got Jonah dressed, putting himself between Jonah and me so I wouldn’t get hit by any of Jonah’s swats and kicks. 

I stayed behind to talk to the doc for a few minutes.  There wasn’t much to say; the doc saw an obvious need for placement and told me he thought Jonah would really benefit and be happier with 24-hour care. 

Small consolation.  But the truth is that what used to be small consolation is now something we cling to, and hope for, and want as soon as possible.  Even with the oxymoronic torment it brings us. 

So I walk out to the parking lot and I see the SUV’s back hatch is swung open, and I get in the passenger seat and there’s Andy holding Jonah in the backseat, and Jonah’s undressed from the waist down.  I guess he tried to kick a baby in the waiting room on the way out and then Andy half-carried him to the car, Jonah fighting him all the way, and when they got to the car Jonah took off his shoes and pants and pull-ups off, attacking Andy the whole time.  I saw Andy’s hands were spotted with blood, probably from being bitten and scratched. 

I didn’t ask.

I managed to help Andy get Jonah’s pull-up and sweatpants back on him, then we latched him into his harness and secured it to the seat, retrieved his bag from the top of the car, slammed the hatch, and I moved into the driver’s seat to drive us the hell out of there.

Jonah was quiet on the way back.  Andy and I were quiet too.  I asked him briefly what happened, he told me, then we too fell into silence. 

Silence like a door that closes, latched, leaving us in the dark, unseeing, feeling our way along in the black.

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Snow’s sprinkling fine sugar upon this first full day of spring, but we all know its shaker is almost empty, so what the hell.  You’ve lost, cold and snow.  Spring’ll be here soon, like it or don’t. 

It is also M’s birthday and the 10th anniversary of the day I quit smoking cigarettes. 

Today Andy and I take Jonah to his pediatrician, the one we switched to because his specialty is autism.  I’ve got my spare pair of glasses on in case Jonah  flips out (like he did last week when we took him to the psychiatrist and switched his meds from rispersdal to trileptal in yet another attempt to get the right drug to help him).

Jonah drums in his sleep sometimes. 

And he’s been limping on and off, to add to the myriad of mysteries to solve, and I’m hoping they can figure that out too.  

Onward we push, into spring, into the unknown, into another decade of no cigarettes…

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Last night’s full Supermoon was so pretty;  I love astronomical phenomena – I’ve always wanted to see a full eclipse of the sun, for instance, and I’ve traveled miles into the Adirondacks to see a star-splayed sky unlike any you can see here near Albany.

So I stared at the Supermoon and thought about how it hovers so close this day to our world, to Japan, and Libya, and everywhere on this earth where children, especially, face tragedy and war, or are alone, orphaned by disaster, or so hungry their eyes lose the spirit that lives behind them, or existing in terrible places where they face neglect and abuse and God-knows-what.

And then I thought about Jonah, and our situation, and this blog…how I bemoan my actions and choices, how I dramatically describe despair, how I am so very afraid or angry and frustrated – how I feel envious…resentful…depressed.

How microcosmic my life has become.

And then, looking up at that moon, something opens up inside me and I feel a gratitude pour into me that is genuine, humbling, and strangely unsettling.  The events outside my own tiny world are colossally huge, and the vastness is overwhelming, as inconceivable as the Supermoon, so much more so than my own worries.

I live in a state where free care is provided to my aggressive, innocent, uncomprehending son so that he will have a chance to live better, and happier – with access to a place that will provide 24-hour consistency, routine, ritual, and nurturing to him.  And I complain about this because I hold fear around me like a blanket – because I am selfish and want him close at hand – because I allow myself to entertain the notion that somehow Andy and I didn’t do enough, soon enough, right enough, to prevent this.  Because I am wrapped inside my microcosmic universe.

I feel stupid and self-interested – and soul-tired too.

So this entire rambling post is just to say that I realize I am lucky.  Fortunate, blessed, whatever you want to say.

A lot of it is because Jonah’s father Andy is both devoted and resigned to the way his daily life unfolds – that it’s more difficult than I can imagine, that he is stronger and better and kinder than he knows – that he deserves so much more than this life he is enduring right now.  I see how much he is hurting, how tired he must be.  On my best days I can’t handle Jonah for half the time he can, and that’s with help.

I hope Andy gets the life he deserves, for he is smart and good and self-deprecating.  He is the nicest man I ever met, and probably the nicest man I’ll ever know.

Yes, Jonah is lucky.  And so am I.

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It’s pi day (3/14)

So here are 3.14159265etc. awesome things about Jonah…

1.  He eats salad greens, quite happily, too, thanks to his dad…even if it is as finger-food.

2.  Some days, like today, he has only one or two aggressions at school.

3.  He still offers up these awesomely huge smiles, even on the bad days –

.14159265   He loves to roller skate (and has brand new skates that he got for his birthday from Grandma).

I only saw Jonah for a few minutes today.  I stopped at the house, and Jonah requested “peanut butter roll,” which translates into “car ride to Stewart’s next to the Voorheesville train tracks to buy me a hard roll with peanut butter on it.”

He’s gone from:

  • waiting (relatively) patiently for 20 minutes in the earnest hope that a train might possibly come by, then laughing and clapping at the train’s approach and passage…

to:

  • complaining “all done train” whenever we have the unfortunate timing of arriving at the tracks just as a train is passing (all while remaining single-mindedly fixed on the notion of attaining peanut butter roll).

…but we didn’t make it to peanut butter roll because Jonah hit the window of the car door, so we turned around and went home.  We’re going with the ‘consistency punishment method’.  But are we trying to teach him something he can’t learn, or does it sink into his head?  Based on results, we’re not sure; it takes 4 or 5 trips lately to get to peanut butter roll (or even grandma).

Andy even sits him down and explains the deal.  “If you hit the window, we’re going home,”  he’ll tell him.  “No hitting the window.”  And sometimes Jonah’ll say “no hit window.”  Is this echolalia or does he get it?  If he gets it, does he forget it right away?

Next time we go the child psychiatrist we might ask about base-lining him by stopping the meds altogether for a while.  Jonah doesn’t want to play much anymore and he’s lost some of his personality, and the behaviors aren’t really mitigated enough to justify continuing the meds.  Then, if we have to, we can try a new med…a new behavioral method…a new path.  Something else!

So no peanut butter roll, and I doubt there’s any pi in the house.

Sorry, boo.

P.S.  I never understood pi.  Not even a little bit.

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The night before Andy and I traveled to Oneonta to tour Springbrook,  I went with M to Proctor’s to see The Lion King; it was his Christmas present for me.   Oddly, at the last three concerts or shows I’ve gone to, I’ve sat very near or right next to disabled individuals.

At this show, I was seated next to a smiling lady and on her other side was a young man, maybe 20, who was rocking forward and backwards in his chair, obviously excited, obviously mentally disabled.  I said hello to her and asked if the young man had autism; I have a little boy with autism, I explained.  She said his name was Thai (not sure how to spell it – sounds like “tie”), she was his mother, and that no, he had (some other disability I don’t remember)– so we talked a little bit before the show started.

It was obvious that Thai was freaking out the lady sitting on his right – she was scrunched as far away from him as possible – so I suggested to his mom that she switch places with Thai; I told her his rocking and movements wouldn’t bother me.  Gratefully she agreed, and Thai amiably moved to sit next to me instead.

The musical began, the first song (The Circle of Life) building to its climax.  When Thai rocked toward me, I leaned against him; I could tell he liked the pressure because he stopped rocking and leaned right back into me.   I liked the contact, we two leaning into one another – it made me feel warm somehow, knowing this man could come to a musical and enjoy it – it gave me hope that my own boy might one day be able to sit through a show happily, hopefully next to someone who doesn’t mind his disability.  Sometimes during the show Thai would place his hand on my knee – and once I put my hand over his; we sat like that, watching the show, for a few minutes…a one-time connection of two strangers that made me feel more whole.

The show was fantastic…incredible how they did it all on Proctor’s little stage, transforming the place into a magical African jungle-world with innovative costumes, scenery, and fantastic actors and actresses performing in explosions of color and song.

It was a distractingly pleasant prelude for the next day.  Like the day we went to Tradewinds, Kathy (a social worker from Wildwood) picked Andy and me up as soon as we put Jonah on the bus and this time we headed to Oneonta, NY (where I went to college) to tour Springbrook.  Another specialist from Wildwood, Heather, met us there.  It is a pretty location for the school and resident homes, tucked in among the tree-lined hills of the area as if placed there gently by a giant.

I was glad to learn that construction was going on for a brand new gymnasium, cafeteria, and two new residences.  We were very happy to be able to look in at their shallow (2-4 foot, yet large) indoor pool and learn that some of the homes had bathtubs.  Funny what we cared about – of course other things are important too but we want our little water-boy to be able to do the things he most enjoys.  Plus they have equine therapy, yoga, and other activities, they take the kids on trips and outings, and all the kids we saw there looked happy, which is perhaps the best testimony of all.  It is the closest facility to our home (about an hour and 15 minutes away) and I think our favorite, though we’d be happy with Tradewinds as well.  They were having a tie-dye sale so I bought a shirt for Jonah.

Just like last time, though, I broke down when we toured one of the actual residence homes.  I asked the guide how the transition happens – what it’s like when you cannot explain what is happening, for the kids who probably won’t comprehend or understand.  She saw my anguish and kindly explained that there are counselors there who can talk to us.  Tears streamed down my face as she explained, gently but honestly, that the transition is usually not easy for the child in the beginning – that sometimes a parent might choose to stay at a local hotel for a night or two and visit their child, but after that they ask for a full two weeks where you do not visit, so he is not confused and can become acclimated.

Two weeks.

Andy didn’t see the point of staying at a hotel and said so – I think he thought it would only make it harder, and I see that too – but just like last time, I sat in the back of Kathy’s van and cried when we left.

I don’t think we have to bring Jonah back there to be assessed because they are coming to Wildwood to observe him and then meet with Andy and me, on March 29th.  If they accept him I think they will have openings at the end of the school year – and those new residences will be completed in September or October.

I can type forever about the details of this place or that place.  I can understand the necessity of what we are doing and I can feel like I have accepted that necessity intellectually, more and more as its inevitability draws closer, but then my heart sinks into a sickening darkness and I think oh my God how in hell are we going to pack all Jonah’s things up and drive him to this place and then leave?  I think of weird details like which one of us is going to be able to drive back?  Will we have to take turns so one of us can sob while the other navigates us farther and farther away from our son?

What am I going to say to my mother?  How can I go back to work?  Go to the store?  How can I sleep, eat, breathe, knowing Jonah might be crying for daddy or mama or grandma, knowing he is probably confused and scared?

I feel like we’re planing to commit a crime.  There is an uncomfortable ‘karmic-slap‘ shame in me.  I remember when Jonah was 3 or 4, asking myself what does it take for people to give up guardianship of their children and put them in one of these places?  Who does these things?

Now I understand why.  Now I know who.

Andy told me he doesn’t know how he is going to live through this, and I understood exactly what he meant.

It is all he said.  We don’t talk about it.  We just can’t.

But I think about it all the time now.

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My little Jonah Russell turned nine years old today.  Here he is as a baby:

Here he is at two; happy boy:

And at three, on his birthday:

I can’t believe how fast he has grown; I can’t wrap my mind around everything that has changed in his lifetime.

Last night I asked M to pray for me; he’s more traditionally religious than I, so I figured he might be a little closer to “The Source,” if you will.   I asked him to please pray that Jonah is good at school today, for his birthday, his little party with cupcakes and goodie bags Andy sent in with his backpack.

Nine years ago this minute I was in a hospital bed after having requested pillow after pillow because I couldn’t get comfortable and I wanted to create a soft nest for my new sweet little peanut and me.

I remember I wouldn’t let them take him away from me, not to the nursery, not anywhere.  When they told me they had to  bring him to the nursery to weigh him or whatever, I walked along next to the little rolling bin they used and stood there over the people until they handed him back to me.

I am not saying I was right or wrong to do this, or that all the mothers who let their newborns sleep in the nursery are right or wrong – it’s just what I did.  I didn’t want to be away from him.  Not for the night; not for a minute.  I just wanted to hold him and nurse him and watch  him and marvel at him.

And so I did.

Almost all the schools in the Capital District were closed today, but not Wildwood, Jonah’s school.  Kids are bussed in from so many different school districts that sometimes the school stays open and just takes whatever kids make it in.  The Albany City School District was closed, so the busses didn’t come, but Andy drove him in, cupcakes, goodie bags, and all.  I think my son was literally one of a handful of students in the whole place today.

And just like M prayed for me, Jonah had a very good day at school.  I’m sure there wasn’t much of a party, and he was tough to handle both before and after school, but what I asked for was that he have a good day at school, and that’s exactly what I got.  He had zero aggressions.  Thanks, M, for praying it into reality.

Now that we are placing Jonah in a residential educational school, I think maybe there was a reason I clung to him like a burr when he was first born.  I think maybe it was because something deep inside my heart was telling me I wouldn’t be able to hold on to him for long – that we would lose him, in a sense…that he would have to go away.

Jonah doesn’t know it’s his birthday,  but for the first time ever there was no family birthday party, like every other year in our finished basement, Aunt T’s unfailingly delicious homemade chocolate cake the centerpiece of each celebration, its recipe passed down from her grandmother, always iced in chocolate too — a hand-decorated Happy Birthday Jonah squeezed in sweet blue icing next to a questionably identifiable drawing of a whale (Jonah’s home for three days in the Bible).


This site is one of many that tells the Story of Jonah.

“As Jonah is sinking into the sea, a big fish (whale) swallows him. (Jonah 1:17) Here we see God’s great mercy. He could have let Jonah suffer the consequences of his actions and drown. Yet, God intervenes and spares Jonah’s life. We often complain to God about the consequences of our sins but do we ever wonder how often He has spared us from consequences? I rarely ever think about that.”

I know I have been spared from many, many consequences.  But for the first time ever there isn’t a celebration around this day.  There’s too much behind it.  Around it.

And, just like the day he was born, I don’t want to let go of my little baby boy.


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There isn’t really any good news to report.  Jonah’s been “on a tear,” as Andy describes.

Andy’s had to hold him and give him rides to and from school randomly this week because Jonah tried to attack him, the bus driver, the bus aide, or went all hysterical crying and wouldn’t get on the bus.  The teachers at school write things in the log book that, as always, attempt to underscore things that went right during the day as opposed to focusing on his behaviors, but they of course also tell us about the aggressions and what they’re doing about them. Today they must have battled so many aggressions they lost count because instead of naming a number as usual, they simply wrote “several.”

I’ve got a freelance writing project to complete and just one week to do it, so I only stopped at the house briefly today to drop off some birthday presents my dad got Jonah for his birthday (he’ll be 9 on March 7th) and assemble some birthday goodie bags to send into school on Monday for the little party they’ll have for him.  For the few minutes I was there, Jonah walked around agitated, swatting the air with his hand and cocking his arm as if ready to hit, for no apparent reason, anyone who dared cross his path.

At one point Andy, in his dry manner, commented:  this is him being good.

So now here I am, trying to do my writing work as fast as possible so I can help Andy care for him this weekend, but the software system I’m using to submit the writing is so slow that I actually have time to create this blog post between the pages that are loading at a snail’s pace.  Grrrrrrr.

Yesterday I drove to Syracuse and then Ithaca for my day job to train some newspaper peeps.  On the way home I passed a town sign that made me laugh aloud, so I simply had to turn around, pull over, and take a picture of it.

If you don’t have my sense a humor, you’re going to ask why the hell I took this picture.

But if you “get it,” maybe you’ll laugh too.

God knows I needed a laugh.

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