A Pattern. A Problem?

Thinking about writing and the dark cloud lifting, I notice a pattern. No blog posts between October 2011 and February 2012, and more recently, no blog posts between October 2012 and March 2013. I do remember thinking about writing and wondering if anyone would want to read about my aha moment, when I realized that seeing the days stretching out ahead of me and feeling I was going through the motions, looking for joy but really just waiting to die, that this could possibly be the same thing as being “depressed.” In the time it took to think all that, less time than it took to write it out just now, I had decided that, nah, even if people would feel like reading it, I didn’t feel like writing it.

Plus, I was worried. If I wrote about being depressed, or how I really feel, what if someone from the school district got hold of it and used it to blame me for my son’s disabilities, and then tried to take his therapeutic placement away. What if they knew how little emotional reserves I have, and took advantage of that to ramp up the campaign to get my son back in a program in our home district, where it will cost less. Much, much less. Or what if one of my children read it and it hurt their feelings, so deeply that they could never recover, and would spend the rest of their lives estranged from me, even just the tiniest bit alienated in affection? That would be awful.

It felt like the dark days were almost over, at least for now.  Then the storm came.  Being inside with the sound of the television bouncing off the walls of our tiny house, this feels unbearable.  Then I look at the murals my husband painted in the dining room, and the penciled outlines for the kitchen mural I am planning, and I think, maybe I would feel better if I did something creative.  I think I taped those paint sample strips on the wall back in the fall.  How did all that time go by?

I could paint, or I could get out my sewing machine and make that weighted blanket.  But I would have to clear off the table, and that would take more energy than I have.  In fact, I don’t have any energy right now.  I feel like taking a nap.  But that seems scary, like I am old — old people nap — or maybe I am…depressed…so depressed that I need to sleep too much.  I feel swear words swirling around as if my head were a hollow can and the swear words were bits of gravel.  They want to fall but the can keeps spinning around so they go around and around.

Can’t I even take a nap without condemning or doubting myself?  That would make me really mad if I had any emotional energy at all.  Maybe this is the beginning of feeling better.  Surely I have not felt this bad for months on end.  I think I have felt better from time to time.  That must be so, because I don’t see how I could possibly go on and on feeling like this.  Now I’m sure of it.  I’m just having a bad day.  I actually have gotten a lot done today, and it’s okay to take a little nap.  I think I will find the cat and persuade her to take a nap with me.  Feeling her soft fur under my hand and hearing her purring on top of the quilt, next to me, always makes me smile.

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March 7, 2013. Tags: , , , , , . Uncategorized. Leave a comment.

Hard lesson at the hardware store

I was standing in a long line at our small neighborhood hardware store, having come in for a few things I needed to get to work on a project I had been waiting for good weather to start, wishing I had realized earlier that I needed these things, so that I could have been out in the beautiful weather working on my project instead of standing in line in the store with all the other people who had been brought inside by the beautiful weather. There were two cashiers, and as we stood in the one line that is customary in this store, a man walked up from the direction of the head of the line and started another line behind one of the customers at the counter.

My intrapersonal battle of wits began. Who does that? That’s just wrong! Calm down. Let the staff handle it. Even if they don’t, letting one person go ahead is not going to add much time. Oh my God, another person got in the spurious line. This is ridiculous. Oh, great, now it’s three people. As I waged my inner battle to maintain equanimity, feeling outraged and at the same time judging myself for my rigid thinking and tendency to self-righteousness, I became very uncomfortable to the point of being on the verge of tears or some other inappropriate outburst.

I briefly considered complaining out loud, articulating the problem as a lack of clarity about where the line starts. That would be stupid, I thought, as everyone here knows what is happening, not only that there are now two lines, but that the cashier over there is being sooooo slooooow. And that was funny, because the spurious line went to the slower cashier, thwarting the people trying to get out faster than us conformists. As I calmed down, it came into focus how much time the slow cashier was spending talking to the person she was serving, the same person she had been serving while three customers paid and left the store from the line I was in. As she was processing his rewards card, she asked about his name and was he related to someone else in town of the same name who had been her teacher in kindergarten, and he began talking about his genealogical research. As the young man went on and on about his research, I wondered if I would actually get out of the store before the line-jumpers, and then declined to berate myself for being so opinionated, so inflexible.

Suddenly the penny dropped, and I realized that from his name, I knew who the young man was, that I knew his mother from the special education community. I realized that he had disabilities not unlike my own son’s, and I wondered if my son would someday be in a line in a store on a busy Saturday, with people behind him on the verge of complaining, and if they did, would he understand that it would not be about him, that it would be mostly about them and their own limitations.

As I left the store, I felt worn out emotionally, so glad I had not said anything to embarrass myself and hurt other people, so glad no one else had, feeling like a terrible friend and mother for having had all those feelings and thoughts, feeling awful about my own resistance to a life sentence caring about others. I had so wanted to be a mother and I remember enjoying it for years, even after we realized my son had issues though we did not fully understand what those issues are. When did I get so worn down that I struggle for control when faced with the least of adversities? I guess I will check out that “caring for the caregiver” series. Clearly, I have been standing too long in a never-ending line, but I am the cashier serving everyone else, letting everyone else come to the head of the line before I take care of myself, an all-weather project that cannot wait any longer.

October 1, 2012. Tags: , , , , , , . Uncategorized. Leave a comment.

Close Encounters of the Aspergers Kind

Sometimes at our house, it can be challenging to connect emotionally with one another.  There’s the constant challenge of Aspergers, but there are also challenges of each of us being in different states including emotionally exhausted, frazzled, stressed out, sleep deprived, annoyed, frustrated, angry, with each expecting from the others compassion and respect, regardless of their individual state of being at the moment.  Two of us (I will admit to being one) are, shall we say, high-strung, and the other two are mellow with a tendency to withdraw.  I’m sure we are no different from many households in this regard.  We also have a very small house so it is hard to get or give space.

Despite these challenges, there is a lot of humor in circulation around here.  Something that will elicit a smile, or even better, a laugh, makes even the worst of times more bearable, and seals the best of times on our hearts like a metaphysical smiley face sticker.

Having had my birthday and Mother’s Day within the same week, I felt that special longing for connection for a number of days.  We had decided some time ago to keep to a routine and not have the big observances for holidays or disruption to our physical space that came from decorating for Halloween, Thanksgiving, Christmas, Easter, the 4th of July, or for birthdays.  This is easier on me as it’s less work, on my husband and son as they both thrive on sameness.  I think it is pretty hard on our NT daughter, but she had her turn growing up, and accepts the change with grace.

So our holidays look pretty blah, but I still feel these days are special, and mark them in a small way.  I made an Easter basket for my grown daughter because that is still something special between us.  She brought her boyfriend over for a night of TV on my birthday, which I felt was a great gift, and she presented me with a gift bag on Mother’s Day with earrings in a design that she knew would be special to me.  My husband did nothing to mark either my birthday or Mother’s Day, but I have noticed that every morning, the first thing he says to me is, “Hello, sweetie.”  Did he always do this and I just noticed?  I don’t know, but I think now that it more than compensates for the lack of an annual card or gift.  I can’t stop smiling just thinking about it.

And he laughs at my jokes, a rare trait which I appreciate immensely.  He regularly cracks me up as well, with a very dry, understated humor.  Like the time we were newly married, visiting family, at my sister’s house with nothing to do at that moment except watch bad TV.  I was still adjusting to spending so much time with someone who is so much quieter than I am, and who watches so much more TV than me when we could be talking instead.  I was enduring watching the actor going on desperately about how he needed money, the music was ratcheting up the emotion of the scene, and the actor finally yelled, “I’ve got to have the money!” to which my new husband appended lightning quick and in the perfect tone, “To pay for my acting lessons!”  Perhaps you had to be there, but decades later, I remember that as a watershed moment, when I was reminded that the man is exceedingly thoughtful and witty, and that I love being with him, but really understood for the first time that his wonderfulness only emerges when he has space to be himself.  I hope our son grows up to be the same kind of sweet and thoughtful husband, and ends up with someone who loves the whole of him and does not compare him to an ideal created on Madison Avenue or in the pages of a novel.

My most personal interaction with my son on Mother’s Day occurred when I called him in to see a cute video.  Watching over my shoulder as I sat at my computer, he smiled as I played an awww-inspiring video of a dog jumping in circles on a bed.  When it finished, my son pointed to the URL (wimp.com) and deadpanned, “Weakly interacting massive particles.”  Then he left the room.

I know he loves animals and I could see that he enjoyed seeing the video.  One might think that this is typical Asperger behavior, but that is what is so funny.  He is not usually like that.  It’s like he was spoofing himself.  My take was that by not commenting on the content of the video, instead purposely seizing the opportunity to make an off-topic remark related to his beloved physics (which I flunked and avoid talking about whenever possible), he was exacting revenge on me for interrupting his round-trip between bedroom/mancave and kitchen, and letting me know that attempting to interact with him in this manner would bring me no joy.  Except it did.

It can be challenging to feel connected, but when I can slow down and accept the interactions instead of comparing them to what they are not, I find these loving relationships to be a source of great joy.

May 14, 2012. Tags: , , , , , , , , , . Uncategorized. Leave a comment.

Overheard

Now that I am taking a nutritional supplement specifically designed to help with tinnitus, I am finding my improved hearing to be a mixed blessing.  Please don’t tell my family I can hear better.  I am finding it advantageous to feign a deaf ear sometimes.  I learned this from my children.

Here are a few things I have overheard recently:

One child calling me back to talk as I’m getting ready to go out the door with the other child, is told, “Please don’t piss her off right before I have to hang out with her.”

On noticing the misspelling in the headline for a Casey James music video, Polk Salad Annie:  “Anyone who knows about wild greens from the south knows what POKE SALAD is.  I wonder if they spelled it POLK because it has to do with music and they’re getting confused with a polka.”

In response to a question from a friend on Skype, who I had no idea could hear me, “My mother.  Her humor is inappropriate.”

This was kind of a double overhearing event, occurring after I had stood outside the bathroom door (next to child’s closed door), asking the person doing personal care not bathroom-related to hurry up, then doing a schtick inspired by a scene we had just seen in the movie Bridesmaids, “I’ll just go pee in the sink,” “on your red rug” (where the pup used to have accidents), etc., which I had thought was humorous and designed to motivate the person to clear out as they were going to get no peace until then.

Not only did it not work, said child having a snappy comeback for every threat, I am now wondering who of my other child’s friends knows I make bathroom jokes and will I have trouble enforcing standards of behavior if the friend visits our home.  Or will I have trouble pretending we have standards.  Damn it all!  Oops, did I say that out loud?

May 4, 2012. Tags: , , , , , , , , . Uncategorized. 7 comments.

A desk, a decision

A few days ago, I bit the bullet and purchased a rolling computer desk at Staples.  It was a somewhat involved transaction with my turning in a hoard of used ink cartridges and redeeming a coupon I had received in the mail, to offset the cost of myriad small items plus the desk in a very heavy box in the cart, which the cashier said I did not have to take out. Eventually, I got rung up and navigated the keypad with my rewards card number and credit card. My total seemed a little lower than I expected, but since my Lyme disease, I can no longer do math in my head, so I tried to sort out my mistake as the cashier bagged my items, and couldn’t.  As I rolled my cart out of the store, I tried to let go of the mental math, and couldn’t.

I stopped just outside the doors, on the sidewalk with my cart, to scrutinize my receipt. I scanned up and down the receipt looking for what was missing, first by the unintelligible product descriptions, and then by the amounts charged. The only big ticket items were boxes of printer ink. I realized, it was not that my total was a little low; it was that the subtotal for everything but the desk was much higher than I had expected, and the desk was totally not there.

A number of thoughts occurred practically simultaneously, as if thoughts could run through my mind playing crack-the-whip:  “I’m outside the store and it’s their mistake,” holding tight to a disingenuous “maybe it’s there and I should go home and check the receipt more carefully,” alongside “there are eight items on the receipt and the desk is not there,” and “but I’m kind of in a hurry,” and the final thought “well, not really, but I could have been” seeming to spin away into oblivion.  The novelty of indecision in a situation like this jolted me out of my mental morass. I am a mom who has modeled honesty for her children at every opportunity.  I thought, what the hell is going on with me – money is tight, there are no witnesses, and I suddenly have no moral compass???

To top it off, a number of things made this random cashier error seem weirdly significant:

1. Just as I was walking past a closed register, a cashier had arrived to open it and announced he would help “the next person” in the really long line at the only other open cashier. I hung back as a person from the existing line walked over and stepped in front of me up to the register. No one else in the really long line made a move, and I said to them, “I know you all were here before me. Do you want to go ahead of me?” Most did not respond; the ones who looked up all shook their heads. Not a big deal, but seemed a little unusual to me.

2. I noticed that by a freakish coincidence, my cashier resembled Don Cheadle, the actor who played the angel in the movie Family Man. Great movie. We see the character playing a man trying to get service from a cashier, and later in the movie, as a cashier himself. When people did not do the right thing in this movie, you had to think, “No, no, no, you small-thinking, small-hearted human beings.” I thought that anyway. At the movie. And at myself standing outside Staples.

So I wheeled the cart back in. The cashier had disappeared, and there was again the one lone open register. I did not want to make a big deal by going to the manager, so I scanned the front of the store and saw my cashier walking toward the back of the store down one of the aisles. I called, “Sir, sir!” He looked up and I waved my receipt and said, “Could you just help me understand this?”  Once he walked over, I said quietly, “I don’t see the desk — did you charge me for the desk?” He looked over the receipt, said slowly, “No, I didn’t. I can do that now.”

As he opened the same register and rung me up again, he looked very solemn. I wondered if he had been going on break and was not happy that my coming back in had delayed him. I said lightly, “Do you think I’m crazy for coming back in?” He looked up from the cash drawer and said, “No, it’s great that you came back. People think they save money sometimes, but everything costs you; later you lose much more.” I took this to mean he believes that what goes around comes around, there is karma, everyone gets back what they give out, which made me think that he did not so much mind coming back to ring me out again.

I try to remember things like this when I feel like I don’t know what I am doing as a mom.  I try to remember that even when no one is looking, I try to do the right thing.  That has to count for something.

Epilogue:  I set up the new desk in the dining room, with the newish flat screen monitor.  I took a day to get the stuff on my old desk in another room sorted out, in preparation for moving my desktop computer tower to the new desk in the dining room.  Apparently the monitor and desk were not just sitting there in the dining room waiting for me.  They were calling out to my son.  He asked me if he could put his laptop on the new desk and hook it up to the new monitor, and I said yes.

That was the beginning of getting him out of his room to hang out with the family more.  So what if I still work at my old desk with a behemoth of a CRT monitor.  So what if his idea of hanging out is to be playing Minecraft on his laptop while he listens to the Food Network on the TV in the adjoining room.  So what if I will never know for sure that this truly is my reward.  So what if I could never know that a desk one walked away with without paying for could never have called forth this beautiful result.  I feel blessed knowing that just as crap and bad things happen every day, small yet wondrous things happen every day too, and it’s okay not to know why for sure, but it’s also okay to think that maybe the small things we do, they matter.

April 28, 2012. Tags: , , , , , . Uncategorized. Leave a comment.

Tears for a friend

I hear my son laughing, Skyping his friends as they play online together.  He is not yet aware that a girl he went to school with has ended her life, and that her body has been recovered from the park where they once played.  Her close friends found out within minutes of her mother finding the note, texting and calling each other.  The neighborhood found out as we heard and saw the first responders converge on the park by car, firetruck and helicopter, searching for the lost girl.

My husband and I talk about how to break the news.  Should we wait until we have more information?  What if he finds out from someone else?  That is not likely.  He is engrossed in his game, temporarily shut off from the world we consider real, in a different world inhabited by him and his friends, and their electronic allies and enemies.  The teenagers in the real world around us are of minimal interest.  Our teenager is no longer close to that crowd, having left them in middle school for extended stays in the hospital.

Even during the most difficult times, we were grateful that our son’s mental health issues had been discovered while he was young enough to want to return to our home and be with our family, while he still enjoyed our company, while he still trusted us, and before he could learn to self-medicate with drugs or alcohol.  The friends he plays with now are from his new school, a school for kids like him, and his isolation from friends from the neighborhood, from our old church, from elementary and middle school, is no longer as painful to him as it once was.

For me, the change was almost unbearable.  The end of his social world was the end of my social world, and I exchanged my work, parent coffees and volunteering for questionnaires, consultations, and waiting rooms.  The camaraderie I had enjoyed with other moms was gone.  No more conferring over those compelling questions, how long to let him play on his Gameboy, how much to spend on a birthday present for a friend, whether or not to require him to exchange valentines with classmates.  The questions were different now, the stakes higher.  Where do you draw the line with aggression?  Zero tolerance for physical violence, sure, but what about threatening posturing?  Yelling?  Sarcasm and disrespect?  How intrusive should you be when they seem down?  How much independence do you give them around taking their medications?

In my new peer group, the common bond is a profound love for our children, alloyed with profound sadness, weariness, and a bent towards self-blaming.  We help one another on the path to a healthier place.  It is still painful for me, but it is a pain I embrace, knowing that while our family is no longer in the social mainstream, my son will have the support he needs to deal with whatever comes his way.

As we talk about how to break the news, I wonder what kind of support he will need.  He may not need any.  After all, he spent months in the hospital with other kids with mental health issues, some of whom tried and failed to end their lives.  I’m sure they talked about it.  During one of our visits, he said he felt bad that an older teen who had been discharged, had had to come back to the unit.  I remember thinking, it was good that his family had access to great mental healthcare for him, and that they had known how acutely he needed it.

I know that later I will have to go in and talk with him about stopping the game and going to bed.  The dread I sometimes feel in advance of a difficult discussion is not there.  Whether or not he goes to bed on time, or at all tonight, seems trivial.  I hear him laughing with his friends.  I think of the girl we knew, and her friends and family down the street, weeping.  I am so sorry for them, and for the first time, I wish that other families could know what we know.

April 23, 2012. Tags: , , , , . Uncategorized. 2 comments.

Car Talk

I tell my Aspie, “Keep talking.”
I am thinking, pay no attention to the fact that I’m not listening.  It’s not that I’m not trying to listen. I am, really. But somehow he loses me when an oncoming car veers into my lane, when I am stopped at a light behind someone turning left and watching in my rearview mirror as a fast-moving car bears down on us, when I am approaching a green light unimpeded only to have someone blow through the red light right in front of me. You know, those lovely moments of Boston driving that occur so often now that everyone is so stressed out.
But I can’t get stressed out, because driving to and from school is when my son talks non-stop for his own stress control. I want him to go to school and come home without meltdowns, so this is our arrangement, that unless I tell him I am overloaded and he has to be quiet for us to be safe, then he gets to talk in an indoor voice as much as he wants.
I was trying to remember them from our trip Monday, but as I was driving, I could not write anything down.  It was nonstop, but I only remember two things: “You know what’s so cool about dark matter?”  and after he was done with that topic, the following exchange.
Aspie: “Mom, do you know about gravity waves?”
Me: “A little, just from what you told me about them before.”
Aspie: “Oh.  [Long pause].  Can I tell you again?”
Me: “Sure.”

February 16, 2012. Tags: , , , . Uncategorized. Leave a comment.

How do my children pity me? Let me count the ways. One.

Sitting with his therapist and me, my son confided, “I didn’t get to sleep last night until 11:10.”  He added with a smile, “I thought that was cool.”  I said, “I get a kick out of that too, like when the clock says 1-2-3-4 [12:34].”  My son looked at me, like how in the world did I think that might even approach being cool.  “Mom,” he said, “that’s not binary.”

February 6, 2012. Tags: , . Uncategorized. Leave a comment.

Dinner at the Vegan Bistro

We just got back from a belated birthday dinner at a new vegan restaurant I have been wanting to try, just me and my Aspie, as guests of a family friend. My Aspie was in his element, doing something he loves with me and a friend who has a special connection with him. It occurred to me, our life is not heavy all the time – just when I am trying to make him conform.

I watched him from across the table – we two adults sat together on one side of the table while the man-child sat on the other side. As we read the menus, he asked, “Is it weird that I’m a kid and I already know what all these wines taste like?” He knows from watching the Food Network and from tasting food cooked with wine. He has told me that he has already decided he will never try alcohol, thinking it’s a bad idea to mix with his meds.

Our friend said, “No, it’s not weird. In many cultures where people drink more wine, kids grow up knowing what wines taste like.” That started a discussion of traveling, living abroad, drinking local water or not, bacteria in the gut, the immune system, and other fun dinnertime topics.

My Aspie repeatedly offered me a sample of his cornmeal-crusted oyster mushrooms, and I repeatedly declined politely. Finally I said, somewhat perplexed, I didn’t understand why he kept offering me oyster mushrooms when he knows I am allergic to shellfish. He and our friend erupted in laughter and he explained, they are only called oyster mushrooms, there is no oyster, only mushrooms. I was mesmerized by his gestures, gentle and graceful, as he described the shape to explain why they are called oyster mushrooms.

Our friend asked about school, and my Aspie told us that his class started a unit on Byzantium and he already knew all the facts. I asked when he had learned about it, and he told me that last year, in a different school, his classmate A “liked”  – had a typically Aspergian deep interest and knowledge of a narrow subject – Roman history, and so my Aspie learned what he could on his own about Rome and Byzantium so he could talk with A about his preferred topic. He related this in such a matter-of-fact manner that gushing about what a great friend he is seemed out of place, so I didn’t, though I thought it.  Imagine, setting out to learn some world history just to be able to talk to a friend, and then actually being able to do it.

I feel very blessed that he is such a brilliant and caring individual, yet I could not help thinking, even as half my mind was engaged in the spoken conversation, what in the world is there to grow up to do for a child like this? I know part of my anxiety stems from the fear born of ignorance. I have no idea what is out there for him.

October 15, 2011. Tags: , , , , . Uncategorized. Leave a comment.

Learning to say, “No.”

Some people need to learn to share, and other people need to learn not to give too much away. Having spent my first few decades giving way too much away, I finally learned to say no.  I realized I had learned how at a healthcare conference I attended one November day a few years ago, during a somewhat bizarre experience.
Wandering the sales area during the break, I came upon a small selection of holiday gift items near one vendor’s register.  I found the perfect stocking stuffer for the various young girls in my family, a beautiful little manicure set. There were five of them, and I scooped them up.
The cashier was ringing me up when a woman perusing the counter saw what I had and asked, “Where did you get those?”
“Right over there,” I replied, “but this is all they had.”
The woman looked my precious manicure sets, then at me, declaring, “That’s not fair for you to take them all! Give me two of them.”
The cashier and I exchanged startled looks. I said to the woman, “I’m buying all of them; they’re for my daughter and nieces,” and to the cashier, “and I’m paying cash.” The vendor, who had been momentarily dumbfounded, resumed ringing up my purchase, at the same time apologizing to the woman, “We only brought five; we weren’t sure they would sell.”
Undeterred, the woman leaned into me with her face scant inches from mine, and said with great intensity, “Then just give me one.”
I looked at her and could not help laughing as I said, “No.” I was thinking she must have read Think and Grow Rich and was practicing her sales mojo on me, not realizing that I had read it too.
She became increasingly demanding that I give her some of the manicure sets, getting as in-my-face as she could, standing at my side as I stood at the counter.  I repeated the word no, pleasantly yet firmly.  More than a few people stopped to stare at us, as the woman was quite loud.  Only after she finally walked away did I think of asking her, “Does that ever work for you?”
Back in our seats after the break, to my astonishment, before I could tell her about the strange interaction at the cash register, my friend and colleague started telling me about a woman she had met during the break who had been very angry about someone buying all five manicure sets and refusing to give her any. My friend recounted telling the angry woman that the problem was not that one person bought all five, it was that the exhibitor only brought five to a conference with hundreds of participants. Ridiculously proud of myself, I said nonchalantly, “That was me.” My friend, who knows me well, was surprised and proud of me, and congratulated me extravagantly on being able to say no.
More recently, I went to a water park birthday party to help supervise the boys. At one point, having waited so long for a turn that the other boys and chaperones had deserted us, my son and I were enjoying playing basketball, alongside another family, in a pool equipped with two nets and two foam basketballs. As my son went to shoot, rather than waiting for a turn, a boy we did not know swam right up to my son, bumped against him and reached for the ball, saying loudly, “Can I have the ball?”
My son gave me a deer-in-the-headlights look, and I reminded him, “You can say, when I’m all done, you can have a turn.” My son said it, and the other boy swam away, reminding me of that woman at the healthcare conference years before.  So proud of my son, I was surprised to realize he was staring at me angrily.
I asked, “What?” and he said, “I don’t like doing that. It’s really hard!”
“The more you do it, the easier it gets,” I said, smiling. “I’m really proud of you. Take your shot.”

October 13, 2011. Tags: , . Uncategorized. Leave a comment.

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