Internal
by BrianRobinson
 Kaleidoscopic
Oct 07, 2011 | 2629 views |  0 comments | 10 10 recommendations | email to a friend | print | permalink

Having more than a vested interest, I tend to keep track of autism news.  Two recent articles - here and here - have shown a genetic link to autism-like symptoms.  There's still some controversy over what 'causes' autism but more and more evidence shows a common factor is in the genes.

Which, for better and for worse, means autism is part and parcel of our son.  It is in him, a inseparable and fundamental fact.

That doesn't have to be a reason for mourning, and it certainly isn't a reason to celebrate.  It just is - part of him from the ground up, so to speak.

And while it has to define who he is in many ways, I want his main identification to be whatever he wants it to be - reader, dancer, flirter (oh yes.  He can work a room in a way that Valentino would envy and take notes on) or his apparent current one of 'raiser of daddy's blood pressure'.  He is a fill in the blank who happens to be autistic, not an autistic person who happens to be fill in the blank.

 

Cunning
by BrianRobinson
 Kaleidoscopic
Sep 28, 2011 | 1388 views |  0 comments | 12 12 recommendations | email to a friend | print | permalink

     I've said it a lot, and I will continue to say it: My son is very, very smart and very, very cunning. 

     Now, cunning may have a negative connotation to it - someone who sneaks, who cheats, who cuts corners and does barely-legal or just-barely-illegal things to get an advantage.  And, don't get me wrong, there may be some of that in what he does.

     Take school.  Just yesterday, one of his teachers was telling him how much better he was doing in her class, even talking a bit to her.  I went and got him and we were walking down the hall and he was sort-of chatting to as he does.  He has a thing, where he will answer some kinds of questions if you cue him with the sound of the correct answer.  This may, sort of kind of, be a bit of a cheat for him, but he usually answers the question with the correct answer out of a bunch of possibilities with the same start so I'm really not sure.

     He was doing that with me on some stuff and that teacher heard him, and said, "Xander!  You've been holding out on me!  I'm gonna make you talk more to me!"

    This may or may not be to his liking.  There is a possibility he had been underdoing what he could do, so he wouldn't have to do more.  I'm not ruling it out.

    BUT - it may also simply be a survival mechanism. 

    Autistic people have a huge problem with sensory issues - I used this example to a friend a few nights ago.  We were out in a parking lot after tae kwon do, and I was talking/bragging about my son and how well he did things with all the assaults on his senses.  I pointed to the parking lot lights and the florescent lights back in the classroom, and said "You know we see these lights as solid, but they're really flickering super fast, too fast for us to see.  But some autistics can tell that.  It would be like almost continually living in a strobe light, every second."  Add to that the flickering on a computer screen - which is why when you see a computer screen on a TV during a news broadcast interview you'll see diagonal lines skittering down the screen over and over.

    Imagine trying to work on something like that.  Or be in a place with continual strobe lighting.  The agonizing headache, the eyestrain, the jitteriness. 

   Now I don't think Xander has that issue, or if he does it's to a much lesser extent.  But I think he does have pressure sensitivity, where holding things that dig in - like the ridges on a pencil, or the edges of a zipper or a button - dig in more and hurt, because the times he's tried to hold those things, he's jerked his head away like you or I would if we grabbed a hot pan off the stove.  Or with talking - perhaps the teacher's voice, as pleasant as it is to you and me, may have some frequency that hits him hard and odd.  Or the room full of chairs and tables make the sound bounce around, so one ear hears the words a beat after or before the other, like a CD playing the same track at different speeds through different speakers.  (I seem to recall a recent report that showed nerves impulses did travel oddly in autistic people's brains, but can't recall it for sure.)

   If that's the case, why not fake being unable to do something that hurts to do? 

   Now of course, sadly, I can't know.  He can't tell me.  And many things that may be troubling him is simply things he has to learn how to do, if for no other reason than to find OTHER ways to accomplish that things.  Say, pens instead of pencils.

   What I call cunning may be survival, or even intelligence, a necessity to getting through a day.  The challenge is figuring out which box he's in - won't because he can't; won't because it hurts; won't because he doesn't want to.  Given he has already showed some flashes of cunning - taking out papers he thought would get him in trouble, like I talked about earlier - it's even more difficult, since I know he's smart enough, but is he capable enough, to do certain things?

     Smart AND cunning.  (Like he needed any more advantages!)

Headaches
by BrianRobinson
 Kaleidoscopic
Sep 23, 2011 | 1204 views |  0 comments | 10 10 recommendations | email to a friend | print | permalink

One of the books I've read recently had a line in it that stuck with me.  It was about getting into running, and that inevitable time when you go out and do something you've done so much before - but this time it hurts bad, and it's a struggle to finish something you've gotten through with no trouble before.  It said, "Sometimes the hard is easy, and sometimes the easy is hard."

That really struck a chord with me.  I think, with a little modification, that may be the perfect description of handling an autistic child.

Of course, for parents of autistic children, our easy doesn't equal most other people's easy.  Since Xander's nonverbal, an easy time might be, say, if he runs out of his room screaming "ARE YOU OKAY ARE YOU OKAY?" and rubbing his back.  Means he was probably bouncing on a ball in his room- see the blog entry Weightless, on the first page - and managed to scrape his back on the dresser, or the bed.  A fast mystery, easily solved.

There have been other times when he's come out from his room in that upset mode we've come to recognize as "I did something wrong and know I'm going to be in trouble."  A search then ensues, with the fever and zeal of DeLeon's search for the Fountain of Youth, and more often than not the same success as well.  Times like those, we can only be thankful it wasn't something as obvious as a broken ceiling fan or scribbles on the wall (check and check) and wait and see wait we find later.  (Of course, then I have to wonder if when I punish him for a past action he really understands that or he feels I'm just mean...)

Other moderately easy times - once again, Xan banged his head at school this week.  But this time it appeared to be a flat-out 'I don't want to do what you say' moment, since when it happened his teacher said "I'm telling Daddy" and he immediately said "Gonna calm down gonna calm down."  (And then, in an example of the cunning I often write about, when I picked him up he went to his lunch box, opened it up, and got out some papers that had been stuck in there and put them aside, thinking one of them was a note to me about this)  Didn't work, but I gave him points for slickness.

But...

This week I was unfortunate enough to have a migraine.  For those of you who never suffered from these agonies (and there's a precise reason people 'have' headaches but there are migraine 'sufferers'), a woman I knew in my teenage years who also suffered from them told me it was the closest pain a man could get to natural childbirth.  Yeah.  Roll that around in your mind for a minute.

Anyway, I got nailed by one and was fortunate enough Tracy was able to come home after I got Xander so I could go to our room, crank all the fans on high, and huddle in bed while waiting for the pain to pass.  There have been times I've had to handle Xander while suffering from a migraine, and while many of those times have been easy and he's been awesome, there's been the flip side as well.

Times like that make it hard to do anything, much less decipher a cryptic clue.  Much as I hate to admit it, there's often been times when I've forced to just tell him to wait until Mommy gets home and see if she could figure it out.  We've been lucky these times were either not too important, since he didn't repeat it for Mommy, or he worked it out for himself. 

These things, and a lot more, tend to make having an autistic kid like always having to parent while having a low-grade headache and on occasion a full-blown migraine - those times when you have no idea what's going on and feel helpless you can't help and sick your child has to suffer because you can't understand him.  The easy isn't always easy, and the hard can be unbearable.

Then again, these hard times do make me cherish every step he does make towards being his own person.  It makes every accomplishment wonderful and something to be proud of, and respect it so much more because I know it's harder for him to do that.

That's some silver linings you won't ever get in a migraine.

Impact
by BrianRobinson
 Kaleidoscopic
Sep 10, 2011 | 1373 views |  0 comments | 12 12 recommendations | email to a friend | print | permalink

Is head-banging pretty common in autistic kids?  I think so, based on all my personal experience, reading and researching, volunteering with autistic kids and talking to people.  It may not be a 100% correlation - autistic = head banging - but based on all I know it seems to be a usual thing.

I wonder why?  I understand Xander getting frustrated for many reasons and not being able to express it, or not understanding why something only bothers him (imagine being in public and only you being able to see or hear something that drives you crazy), or just getting fed up with something that would bother anyone and having to express himself, but I wonder why it takes that form, slamming the head down.

There is one benefit - as anyone who has witnessed this will say, it's very effective at getting attention.  Perhaps you imagine head-banging as some old 80's-punk-rock/heavy metal thing, where kids would bang their heads up and down near - note that word - the stage.  Yeah.  From what I've seen, there's rarely contact, and when there is the banger usually takes pains to not have it happen again.

Not the way Xander can do it.  It be can "gentle".  I've had some times when something's happened to him and he's just overwhelmed by pain, or anger, or frustration, and he'll pull me down to him and tap his head to mine.  One time he had his hand slammed in a door, another time he was really sick, things like that.  He takes care to be gentle, for a head butt, and it's usually not too bad.  It hurts a touch, and the more he does it the more likely I'll get a bruise, but he can control himself and I can live through it with usually nothing more then a dull throb while he calms himself down.

But there are times...I wrote he banged his head on concrete getting out of the pool.  Hard, no pulling back at all.  All the adults around him were shocked and scared, half expecting blood to shoot out of his skull like a hose.  That time at Barnes and Noble in another post, you could hear the thunk of the skull on the floor, like a soft watermelon being thumped and I felt vibrations through the floor.  I saw a young child slam his head into a long table so hard everything on it jumped, from one end to the next.

It gets its message across.

People who aren't used to this can be shocked and may panic when it happens, which if you only see it now and again makes sense.  It's already happened a few times at school this year - once in computer lab and once in his therapy.  Both times the teachers let him stop work.

Which, I'm fairly sure, was his main goal.  And hey, if it works...

(I did something like this once, doing a fairly harmless yet effective faint.  I had just been diagnosed with hypoglycemia, low blood sugar.  It was found that a sudden large influx of sugar combined with a equally sudden action would make me faint.  In middle school, a place I hadn't exactly set afire with my intellectual prowess, I had forgot about a history test.  Failing it would have dragged my grade down to single digits.  LOW single digits.  So at lunch, I chowed down a whole bag of Red Hot candies, and when the test was handed out stood up to ask a question.  For a second, anyway.

Got me out of the test.)

Xander is both smart and cunning, a dangerous combination.  He knows that freaking some particular teachers out will equal stopping some assignment he doesn't want to do.  I was told about it, and checked out the rooms it happened in to see if I could see anything that might have caused him problems with his sensory issues.  I didn't.  Doesn't mean there's nothing there but...

This tactic loses its impact with most parents, some sooner, some later.  I don't remember the exact date this happened with me, but I remember it had been a long, hard day and he was banging his head on the couch arm.  I sighed and told him, "If you're going to do that, go ahead and knock yourself out, 'cause I'm tired of it all and could use a break."  Now I only notice it for punishment purposes, as in if I see you bang your head and I can tell it's because you're mad, now you can be mad and in trouble as well.  He's mostly stopped - it still happens and he still gets in trouble for it, but it's almost always a sign of anger or frustration.  Naturally, if it happens for pain reasons, we don't punich - but we also don't freak out, just checking it out and seeing why it happened instead of being shocked or scared.

The impacts have lessened.

But there are other, less obvious ones we still have to lessen.

If we hear about a head butting incident, we tend to investigate and see if there was some cause besides stubborness or not wanting to do something.  Since we can't see or feel what Xander feels, we're pretty wide open in our guessing.  We've been pretty lenient too, giving him the benefit of the doubt every time we could - the 'kicking the puppy' feeling being avoided.  The problem with that is he may get away with stuff a lot.

So now he's been warned we're going the opposite way, only giving him credit if it's an obvious problem.  We're doing this for several reasons, not only to get him to understand the get-out-of-jail (by headbutting through a wall) card won't work anymore, but more importantly, we're trying to get him to explain what's happening.  Instead of using the head butt as a catch-all reason and leave it to us to understand, we're trying to get him to make us understand by telling us what's going on.

This will lead to misunderstandings, guilt, and more than likely some trouble sleeping for me, because I know I'm going to get some things wrong.  But I'm doing it anyway, trying to get him to do more, to grow some, to get a glimpse into him and give him a chance to help himself AND us by telling us his problems.  We hope the impact from his head butts will be replaced by the impact from his words.

However, I fully expect some more bruises on my forehead - this time from self-impacts.

Unknown
by BrianRobinson
 Kaleidoscopic
Sep 05, 2011 | 1298 views |  0 comments | 10 10 recommendations | email to a friend | print | permalink

Having a nonverbal autistic child - which, really, Xander isn't, since he CAN talk, but he isn't as adept as he should be for good, or even nominal, communication - is a challenge for many reasons I've posted about before.  It's kind of comparable to having a baby who isn't old enough to talk  - but in some ways, much harder and worse. You don't expect or need a baby to have a give-and-take conversation with you, but with a older child you do and need to.

The hardest thing I've had to adjust to with Xander is the hurting knowledge that much of his inner life will be a mystery to me, and that ranges from the superficial to the deep. 

His birthday and Christmases are not fun times for me.  To be honest, I've never been a Christmas spirit man.  If I'd have been a Who, I would have taken vacation every December or gone crazy from all the cheer.  That precedes my little guy.  But with his autism, it's gone deeper.

You want to get your child things he likes.  (And of course some socks and underwear style gifts, just to be a parent.)  Other parents gets hints, clues, or outright demands for what their kid wants.  With Xan, it's not so easy.  Probably over half of the gifts I've tried to get him are metaphorically shrugged at, maybe politely tried for a minute, and then forgotten or ignored.  Unless it's obvious, I'm probably going to be wrong.

Some things can be guessed at.  He liked the first Tickle-Me-Elmo, so when the next version came out I got it.  But the voice was just slightly different, a bit higher, a bit more obviously electronic.  If I could tell that, to Xander it was probably like the difference between a cat's meow and a snake's hiss, and it just didn't fit.  I was wrong, but at least I knew why.  We thought he'd enjoy riding a horse at one summer camp, but a helmet was required and anything on his head bothers him immensely.

But other things I could have sworn he would like, he doesn't, and I have no idea.  Same character or same kind of game or same kind of activity or whatever.

Because he can't tell me, all I have to go on is his reaction after the fact, and a guesswork game of why.  Too loud?  Too hard?  Colors too bright?  Figure not exactly like the character on television?

But even that, as annoying, painful and frustrating as it is, is nothing compared to the fact that I don't know my son like I want to.

Does he like football?  He'll watch it with me, but wil leave a lot.  Baseball?  Soccer?  Does he want to PLAY football, or baseball, or soccer?

I know he likes How To Train Your Dragon - who's his favorite character?  Toothless, Hiccup, Astrid, Gobber?  Why?  I don't expect deep psychological bonding or identification, but I can't even get 'I like the color black' or 'He talks funny'.

Other parents can build a mental image of their child from their likes, their dislikes, what they want to do or be and what they don't want to do or be.  They can use this for the most basic things, like ruling out gifts because of a wrong color or character.  Or it can be used to shape their child - since he likes to read, let's discuss his favorite book; or since he enjoys this martial arts movie let's try them out on Tae-Kwon-Do.  Or it can be used to know their child - he's going to be a athlete, a scholar, good with girls.

It's harder for us to get any information like that for the easy things, and often the things we do get to know aren't the fun kind. 

Most of all, I miss the chances to have a give-and-take conversation with my son, where I can learn about him and know about him more and can explain what I know and feel.  To have a chance to dig deeper and get something straight from him, instead of guessing at things.  To be able to get the things I can use to help him, from getting the right gift to doing things he likes to perhaps getting him into things he'll resist but love later.  And having him get me more too, of course - but I really want to get to know him.

He's my son, and I love him totally.  But he is very much unknown to me.

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Dispute over records charge keeps JSU off teacher training ratings list
by Madasyn Czebiniak
Star staff writer
Jun 20, 2013 | 1308 views |  0 comments | 25 25 recommendations | email to a friend | print
Jacksonville State University’s teacher preparation program, one of the biggest in the state, doesn't have a ranking in the first-ever nationwide survey of teacher preparation programs. The authors of the study released this week say it’s because the university wanted to charge them $9,800 for data. “We thought that charge was excessive,” said Arthur McKee, the managing director of teacher preparation studies at the National Council for Teacher Quality. The council asked 1,100 colleges for information about their teacher preparation programs as part of what the study’s authors say is the first nationwide assessment of teacher training. John Hammett, dean of the college of education and professional studies at JSU, said school officials didn’t agree with the study’s methodology. “We didn’t think it was a valid evaluation of our program. They don’t look at the empirical data,” he said. Checking on teacher training The council was created in 2000 to increase the number of effective teachers in the nation. Researchers with the council requested syllabi, alumni surveys and outlines of the courses taught in each preparation program from teachers’ colleges across the country so they could see whether prospective teachers were receiving proper training. The council got responses from 608 schools. The review team was made up of 84 analysts under the supervision of McKee. They rated institutions on four standards: admissions, subject preparation, practice teaching and how well alumni felt the program served their needs. Chet Linton, the CEO and president of the School Improvement Network, said he thinks the country is at a point where everyone wants things to get better, especially when it comes to education. “Students need to be prepared for the work environment. They need to collaborate. They need to be able to use technology. But we don’t have teachers who can walk into classrooms and teach students those skills,” he said. Linton said colleges have the opportunity to implement Common Core training for upcoming teachers so they can hit the ground running when they start working. The implementation of Common Core teaching standards in teaching programs were included in the ratings. Hammett said the council graded JSU on Common Core math standards that had yet to be implemented. “We weren’t even doing that yet and they were trying to evaluate us on it,” he said. The price tag McKee said most institutions charged around $250 to provide information for the study. At least two other Alabama institutions asked for four-figure amounts to provide data, the council said. The University of Alabama at Birmingham asked for $3,395. The University of Alabama wanted $4,000. UAB spokeswoman Dale Turnbough declined to comment Wednesday. Attempts to reach officials of the University of Alabama’s college of education for comment were not immediately successful Wednesday. Hammett said he was confused by the council’s review of JSU’s education preparation programs because he eventually sent them the information they requested. Hammett said he originally told the council the information they requested could cost the group up to $10,000. Both McKee and Hammett said after the council shortened its list of requested documents, Hammett compiled the information on his own and sent it to them for free, he said. “I sent them six emails full of data,” he said. But by then it was too late. The deadline for information was mid-January. Hammett sent the information on Jan. 29, said Stephanie Zoz, the council’s manager of data collection said. JSU in the ratings JSU did not appear on the council’s overall program rating chart Tuesday because the university originally resisted the council’s request for information. The ratings scale went from zero, the lowest, to four, the highest rating. Hammett said he believes JSU should have received a four on the rating system, especially because it has been accredited by the Education Department and the National Council for Accreditation of Teacher Education. Attempts Wednesday to reach officials with the state Education Department were unsuccessful. Zoz said she could not say what rating JSU would have received if it had released its information earlier, only that the information would be added to the review next year. According to McKee, the council originally had ambitions of rating more than 1,100 programs but were still pleased with the effort’s progress. “The institutions we have in the review produce 72 percent of the teachers in the nation,” he said. McKee said he hopes to add JSU’s data to next year’s review. “We’re glad the dean wants to provide the information. We think it’s a happy ending,” he said. Staff Writer Madasyn Czebiniak: 256-235-3553. On Twitter: @Mczebiniak_Star
Second Cleburne commissioner probed in use of inmate labor
by Laura Camper
lcamper@annistonstar.com
Jun 20, 2013 | 456 views |  0 comments | 25 25 recommendations | email to a friend | print
Two Cleburne County commissioners’ use of inmate labor is being scrutinized by the Alabama Ethics Commission. The state body requested records connected to Commissioner Laura Cobb’s employment of a county inmate at a gas station she manages, according to documents provided by Cleburne County Probate Judge Ryan Robertson this week in response to a request from The Star. The Ethics Commission also has requested records of Commissioner Emmett Owen’s use of inmate labor. Cobb, who took office in January, interviewed the inmate, who was later hired to work full-time in the gas station on Alabama 46, she said. The inmate is paid $7.25 per hour, the federal minimum wage. Cobb said that inmate, Kevin Walker, was released from jail about two weeks ago and still works for the station doing cleaning and yard work. According to the records provided by Robertson, the Ethics Commission requested the records of the gas station’s payments to Walker as well as the records of Owen's payments to inmates at his place of business in Georgia. Cobb told a reporter she has not spoken to an investigator. The Ethics Commission does not discuss its investigations, a legal research assistant said last week. Owen has spoken to an investigator and last week he acknowledged taking prisoners to work with him at the Candler Building in Atlanta. Taking the inmates out of state is an infraction of the rules of the program, but according to John Hamm, director of member services for the Association of County Commissions of Alabama, it’s not against state law. Owen last week declined to talk with The Star about whether he had broken any other rules of the program. Cobb was "confused" as to why her employer’s use of inmate labor is being questioned now, she told The Star. “He (Walker) would not have been able to get out if he had not had a full-time job,” Cobb said. Walker told The Star Wednesday that he was grateful to be a part of the program. He said he started out doing community service through the program and later got the paying job at the station. It gave him a chance to pay his fines and support his two children while he was in jail, Walker said. It also gave him a chance to meet people in the community, said Walker, who is from Georgia. “I have community support to where I didn’t have any,” Walker said. The gas station, owned by Won G. Cho, has been using inmates through the program for two or three years, Cobb said. The station was having a difficult time finding reliable employees and the coordinator of the work release program suggested using inmates, she said. It’s worked out very well for the station, and it gives the inmates the opportunity to pay their fines, Cobb said. Cho’s daughter, Maria, confirmed Cobb's comments. She said the inmates have been hard workers and that they have helped her father, who is getting older, she said. “They’re really generous to my daddy,” Cho said. “They help him.” Lane Kilgore, jail administrator, said he could not find an employer contract for the gas station in part because he doesn’t know whose name to look under. The corrections officer who manages the program has been out sick and was unable to help search. But, Kilgore said, Walker is the second inmate who has worked at the station. Staff writer Laura Camper: 256-235-3545. On Twitter @LCamper_Star.
 Leonard “Mac” McQuown (Photo for The Anniston Star by Misty Pointer)
Leonard “Mac” McQuown (Photo for The Anniston Star by Misty Pointer)
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Heflin PD applies for free stuff
by Laura Camper
lcamper@annistonstar.com
Jun 19, 2013 | 225 views |  0 comments | 8 8 recommendations | email to a friend | print
The city of Heflin Police Department has applied to receive tens of thousands of dollars of free equipment through a military surplus program. Captain AJ Benefield, interim police chief in Heflin, said the department is trying for a boat, two golf carts, three all-terrain vehicles and a 36-passenger bus through the 1033 Military Surplus program. It has been approved at the state level but is waiting for final approval, Benefield said. If the department gets all the requested items, it could total about $150,000 worth of equipment, he said. “And all of this is no cost,” Benefield said. The department does have to pick up the equipment and pay any fees or permits to transport it back to the community, he said. The department has gotten other equipment through the program including M16 guns and a bulldozer, Benefield said. “You have to do justification for your department to use these items,” Benefield said. The city could use the golf carts and ATVs to help patrol special events like the concert a few weeks ago or the upcoming Fourth of July parade, Benefield said. The boat could be used for a water rescue on Lake Heflin or at the watershed, he said. And if the city finds that it doesn’t use the equipment, with the exception of demilitarized weapons and such, after a year the department can auction it off to recoup their investment, Benefield said. Sgt. Kenneth Perryman, program coordinator for the state of Alabama, said by 2012, Alabama law enforcement agencies had received more than $16 million worth of equipment through the program. The program is open to all federal and state law enforcement agencies with arrest authority, Perryman said. The program was created by federal act in 1995 with a focus on counter-drug and terrorism efforts. Not all police departments have to deal with terrorism, but they do deal with drug arrests, he said. The program gives them access to high end equipment that they may not otherwise be able to afford, he added. “Whenever (the military) turns things back in, it’s available for law enforcement agencies,” Perryman said. The equipment can run the gamut from buildings, to aircraft, to weapons, to night vision goggles to protective clothing, he said. It’s all given away on a first-come, first-served basis, Benefield said. He gets emails when new equipment becomes available and lets the state know when he is interested in an item. It can take anywhere from two hours to two days to hear back from the state if the department’s request is approved, but it takes longer to go through the rest of the process, Benefield said. Approval for the equipment has to go through three departments, the state, the Department of Defense and the Defense Logistics Agency, which oversees the program, Perryman said. It can take a few weeks before the department will know for sure that it got the equipment, Benefield said. But it’s worth the wait. It’s equipment the department doesn’t have the money to go out and purchase otherwise, he added. “It’s a very beneficial program if used right,” Benefield said.
The Cleburne News - 06/20/13
Jun 19, 2013 | 28 views |  0 comments | 4 4 recommendations | email to a friend | print
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