Wednesday, August 17, 2016

Why My Wife Doesn't Have a "Job"






2 days ago I wrote a post about how my wife went away for the weekend. And the point of the post was after 4 days of being alone with my non verbal son I realized what my wife goes thru as a stay at home mom (SAHM) with a non verbal kid.

How quiet it can be and how long she can go without having an actual back and forth conversation with another human being.

I ended that post by saying

Now I know what some of you were thinking, "why doesn't she get a job?"

Well that's what this post is about.

Why doesn't my wife get a job while my 13 year old autistic & epileptic son is in school.

It's a valid question I guess.

I'll admit that there's been points over the past year that I've wondered that as well and even suggested it to the wife.

Prior to this year wifey would drive my son to and from school each day so her school day was a lot shorter.


In an old blog post from back in 2011 I explained why she drove him...


She is a stay at home mom because she's accepted the fact that my son's crazy schedule could never be handled PROPERLY if she were to work. 
Because of this, unfortunately she lives & breathes autism 24/ 7 (where I get a 40 hour break each week at a glorious place called work). 
She drives Kyle to and from school everyday. We could get busing but this is our (her) decision and the thinking is that we can't put a non-verbal kid on the bus. You hear too many stories about non-verbal kids accidentally being left on the bus all day or worse... 

And in another old blog post from 2011 I wrote this about why my wife is a SAHM


When it comes to my wife getting a job... I honestly don't see what job that she could get for the 5 hours a day that Kyle is in school that would bring in enough money after taxes to make it worth her while...and what kind of job that she could get that would be so flexible with the weekly drama that is life with Kyle....not a week goes by where she isn't called about something... picking him up early because of an illness... going in early for a meeting.... dropping him off late after an early morning doctor appointment...  It never ends...

However, in September 2015 he switched to a new school... that we LOVE.  A new school, that is 30+ miles away.  A new school that you have to take a bridge and pay two tolls to get to.


So, since September we had to bite the bullet and put him on the school bus.

And it's quite a long bus ride. So he's out of the house from about 8am - 4pm.

So, yes on paper, she seemingly could get a job.











And every once in a while when the king is going thru a good stretch behaviorally I think "he's gone for 8 hours a day... So she could find a 6 hour a day job and still be home in time to put him on / take him off the bus"

But this week was a perfect example of why that's not always as simple as it appears to be.

He had two seizures while in school on Monday while wifey was still away with her friends so I received two calls from the school nurse. 


All those posts I wrote back in 2011 of why she's a SAHM?  Those were before he started having seizures.  Those started in 2012 at the age of 9.  Epilepsy is our bigger worry these days.

So I fielded those two calls from the school nurse and had to make that decision as to whether or not it warranted picking him up early or letting him stay for the rest of the day.

I made the executive decision (without checking with the wife) to let him finish out the school day.

However, I'm sure if it was on her watch, she would've called me at work (probably her first conversation of the day) :) and we would've debated whether or not she should go pick him up.

And wifey probably would have. And maybe I should have.

He's been going through a good stretch with the seizures lately but they always seem to come back with a vengeance. And when they happen during school hours these calls and these types of decisions can happen on a weekly basis.

So because of the Monday seizures she needs to pull him out of school early on Thursday this week to check in with the neurologist and find out why he's having more seizures. And I won't be able to take off work for that appointment so she'll be bringing him solo.  So if she had a job, she would need to take off on Thursday afternoon...

And then Monday night the king came downstairs and we realized the ring finger on his right hand was crazy swollen.  We have no idea how he did it.  But he likes to stick his finger in weird places and get it stuck, and he probably did that and yanked it out.  His two knuckles looked bruised.


We iced it and sent him to school on Tuesday, and both the school nurse and his nurse on the bus suggested that we get it x-rayed to make sure it wasn't broken.











On a side note...
God knows what they think of us at the school, not picking up our kid after two seizures and sending him to school with a possible broken finger.  But our thinking is, unless it warrants a trip to the hospital all he's going to do if he's home is sit on the couch and watch tv or nap, so he might as well be in school with more eyes watching him and a nurse right near by.

Anyway, so for a big part of the school day on Tuesday wifey was calling doctors, and getting a scrip for the xray faxed to the radiology department, etc. and we all went for the xray together when I got home from work (because getting xrays is a 2 parent job)

xray results, it's not broken

All this to say that her getting a job that meets our autism and epilepsy lifestyle isn't easy.

Could we use the money from a second income? Sure.


Do these emergencies happen all the time?  No, he can go months lately with no issues, no early school pickups, etc.  However, when they do happen it seems like they come in bunches.  And when he gets the common cold, he's usually out of school for a week.  That's just the way he is.  So she'd be taking off lots of time from work for all this stuff

Is there a job that wifey could find that could fit this crazy schedule?  Maybe, but it's not going to be easy.


And if she did get a job, she readily admits that it's got to be a job that takes her mind off of autism and epilepsy. She's not one of those moms that wants to do more autism stuff or special needs stuff as a career.  Nothing against the moms who can do that.  They are superhuman in our eyes, but she wants no part of that.











I wrote this in a previous blog post from 2013 and I think it sorta fits in here as to why wifey doesn't have a job and definitely doesn't want a job in the special needs field...


A couple of weeks back we had to bring Kyle for some medical tests in the early afternoon so I took the day off from work. 
The plan was to drop the king off to school in the morning and pick him up around 11:30am for his appointments. 
So I tagged along with the wife for her normal Friday morning routine.  
And she was full of energy. We dropped him off at school. 
Then we went for a quick food shopping trip. She was literally racing around the store. And I'm struggling to keep up.  
Me:  "Why are you running?"
Her:  "Cuz since he's only got a half day I got to fit it all in..."
Her agenda...
Food shopping, a quick breakfast, then the gym, a quick trip to costco then we pick up the kid. 
 
And she was on speed, full of energy... 
ME:  "Are you like this every school day?  How do you keep up this pace?  I'm getting exhausted..."
HER: "Yeah. I have a lot of energy in the morning. I gotta keep my mind busy. But late in the day I crash. Unfortunately I usually crash right before you get home from work..."
ME: "Why don't you crash during the day and save some of that energy for me, for when I get home?" 
HER: "Cuz I gotta keep myself, gotta keep my mind busy during the day. Otherwise I'd stay home and cry all day..."
She just said it completely matter of factly...
And I just nodded, smiled, and that part of the conversation ended and we went on with our day. 
But it stuck with me. 
Survival...
For wifey it's about survival. She tries to find joy in the little things, in the frivolous things and she keeps her mind busy...busy with autism things, of course, but also equally busy with non-autism things.  


Anyway wifey is much better about keeping her mind busy and off of obsessing about autism and epilepsy and worry. 
And maybe if she didn't she'd do that she'd "cry all day" or more likely she'd go a little crazy or fall into a funk or a depression...which is what happens to me sometimes.  
She's always the one of her autism mom friends trying to make plans and get out into the non-autism world as much as possible. 
Movies, lunches, dinners, bars to see bands, etc. 
And it helps her a lot. 
Others might think she's being selfish. And sometimes my brain thinks that too. 
But it's about survival. And in the grand scheme of things it makes her a much better, more patient, happier mommy and wifey. 

So I'll end it there.  That's why wifey's not working.  Now if there was some high paying job that fell in her lap I'm sure we'd have a discussion and she'd go for it.  

But to try to find the perfect job to fit her schedule to bring home a few extra bucks each month just isn't worth it right now.

Unless you've got the perfect job for her in a record store, or a radio station, or a music studio I'm sure she'd be all ears...  :-)

That's it... That's all I got.  This is like one of my old school posts.  It's literally all over the place!  Hope it makes some sort of sense!

THE END

----







-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Monday, August 15, 2016

Life w/ a Non-Verbal Kid w/ Autism Can Be Too Quiet







So wifey went away this weekend to the NJ shore with a couple of girlfriends.  So I've kinda been like a single autism parent from Friday afternoon until Monday afternoon.

And my 13-year-old son with autism and epilepsy was pretty darn great this weekend. He was mellow. And went with the flow.  I have absolutely nothing to complain about and wifey truly deserved this weekend away.

This post is just about something I noticed while kinda being a single parent over this weekend.  Basically, I leaned it's quiet when there's no other verbal person in the house for three days.

Of course I talk to the king but it's a complete one-sided conversation.

And if I'm being perfectly honest I probably don't talk to him as much as I should and definitely not as much as one would with a typical 13-year-old.

I will ask him lots of questions throughout the day and generally explain what I am doing and give him a blow by blow of what our agenda for that day is.

But I'll admit that quite a bit of the rest of the talking I do is just listing steps.








"Wash your hands, turn off the water, use the towel."

"Get your peanut  butter out of the fridge, grab a spoon, sit down..."

So when I saw my sister and her family on Saturday afternoon it dawned on me that I probably went close to 24 hours without having a conversation with another human being.

And we were home alone for most of the day on Sunday.

I took a vacation day today because wifey wasn't getting home until right before his school bus.   So while the king was in school today I was puttering around the house, doing errands, etc.  And at some point I realized that the first conversation I had with another human being in person in I don't know how many hours was with the waitress at the diner at 1pm this afternoon.

Basically having this weekend without wifey made me better appreciate what she goes through each weekday when I'm at work even more.

She's a stay at home mom (SAHM) and there are some days when I walk in the door from work at 6:45pm and she's immediately talking my ear off. Giving me a complete blow-by-blow of her day.









And I'm tired from work and probably not paying full attention to her and she gets annoyed.

 Every once in a while she'll say something like, "you're the first person I've had a conversation with all day. And you're gonna come home in a bad mood?  C'mon just fake it like you're interested for 10 minutes and let me talk.  You've been at work in meetings having adult conversations all day"

And up until today I didn't really appreciate what she was talking about or what she was going through. But after this weekend with so few conversations, I now totally get it and appreciate it.   I actually couldn't wait for her to get home from her trip so I could have somebody to have a conversation with!

And boy did she talk my ear off when she got home!  :-)

Now I know what some of you were thinking, "why doesn't she get a job?"

I'll cover that in a blog post tomorrow, but for now this is what I wanted to cover.  The fact that life with a non verbal kid with autism can sometimes be very quiet.  And you can go for long long stretches without a conversation.

Do other autism parents of non verbal kids feel this way?  You feel what I'm talking about?  Or is this something that only single parents deal with?  Or I guess if you're a single autism parent, then you have to work so you have conversations while you're working?

So maybe this is only a SAHM autism mom thing?

I dunno.

All I know is it was really quiet around here without wifey.  And I will try to be better about listening to her when she talks my ear off when I first get home.  :-)

THE END





-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Tuesday, July 12, 2016

Autism Service Dog Program Eliminated?! Help Save It!






As some of you may know, we have an autism service dog for my son.

My autistic son is 13 now but we got our precious dog "Paula" 6 years ago when he was 7 years old, and at his most difficult behaviorally.  And Paula was a godsend and extremely helpful to us.

We got Paula from an amazing organization called Heeling Autism. It was an offshoot of the long-standing not-for-profit Guiding Eyes for the Blind (GEB) 

GEB had a long and storied history of supplying guide dogs to the blind population for the past 60 years.
Paula's graduation picture

And back in 2008 they launched a program that took guide dogs that weren't a right fit for working with the blind, and they retrained them to work with kids with autism and gave them to these families for FREE!

I wrote all about our experiences with Paula and the organization back in 2011 on my blog post, "The Story of Our Autism Service Dog Paula" that you can read HERE.  I encourage you to go over and read that for more of a blow-by-blow of how we got her and how she helps.

In fact I really think you should read that one before continuing on with the rest of this post.

Go read it.  Now!!  READ IT HERE!

We will wait for you, and while we are waiting we'll look at some pics of some more cute Heeling Autism service dogs doing their jobs.







ok, are you back?  Sounds like a pretty amazing program, right?  Cute dogs, right!?

The one thing that always stuck with me over the years about the HA program was the amazing trainers.  As I wrote in that post:


the 3 trainers we worked with were AMAZING!  They somehow knew more about autism and our daily struggles than many people / even experts in our autism world...  And they’ve only been doing this for 4-5 years.  Before that they were blind guide dog trainers.  Anyway…  AMAZING women.

Well the reason I'm writing today is that the Heeling Autism branch of GEB is being eliminated.  That's right the amazing organization that you just read about is going, going, gone!

And this makes absolutely no sense to the 70+ families who have received the miracle of a service dog from this organization.

The reasons that have been given by GEB of why the program is being eliminated are frankly ridiculous.

What they are stating is that the program is too expensive and wasn't self sustainable in its current model.
Yet, Heeling Autism costs less than 1.5% of the organization’s total annual expenses, including less than 50% of the postage/mailing services and less than 23% of the printing/publications expenses.

And worse of all, GEB gave nobody any indication that the program was in trouble.

The families who have received these dogs would gladly have fundraised like crazy if we knew there was a problem. But we were never given the chance.

GEB is trying to appease the autism community with plans to instead offer therapy dogs to schools. 

Saying that clearly undervalues exactly how monumentally helpful and life-changing these "service dogs" have been to the 70+ families that have received one.

Can you imagine saying you're not going to give a blind person his or her own guide dog but instead going to put one dog in a group setting for a bunch of blind people to benefit from?

In both the blind and autism community there is a huge difference between a therapy dog and a service dog trained to perform very specific safety oriented tasks. 

For many of us having a service dog saved our kids lives on countless occasions.

For some of us the idea of going on a plane or going on vacation was impossible with their autistic kids until the service dog came into their lives.

However, the board of directors at GEB makes this seem like a done deal.

The Heeling Autism program as we knew it will be eliminated after they graduate dogs for the 10-15 families that are on their wait list.

(Meanwhile, they shut down their wait list a few years back because it grew too long and they didn't want to dedicate more trainers and dogs to the Heeling Autism program)

After those wait list families get their dogs GEB says they are moving towards this therapy dog in the classroom model.

And there's a bunch of us who are trying to reverse this and implore them to go back to the current model.

And this is where you come in.


A petition was started by graduates (a part of a team with either a guide dog or autism service dog), staff, volunteers, donors and members of the community who believe strongly in the Guiding Eyes mission, and we’re concerned about the direction Guiding Eyes has taken under the current leadership. The abrupt elimination of the Heeling Autism program is just the tip of the iceberg.  

So we started a petition to Save Heeling Autism that you can find HERE or by clicking below.




So I implore you all to please sign it, and share it (using #SaveHeelingAutism), and post a comment on it.

One last thing to mention, we autism families never wanted to make this a competition between the blind and the autism communities.

They both deserve service/guide dogs and GEB has plenty of dogs to go around.


And while the CEO is using the need for GEB to operate as a financially responsible organization as a reason for Heeling Autism's elimination, they have recently launched (and seem to have enough dogs for) a new program called "Running Guides" which is dedicated to training guide dogs to help blind runners run long distance races.

Saving the lives of children on the autism spectrum by preventing them from running out into a busy street, or wandering away to be lost, drowned, or even killed, is arguably an equally worthy cause.

Also, as any service dog trainer will tell you training a dog to run those long distances will almost definitely shorten that dogs working, service dog life.

So we implore the Board of Directors at GEB to reverse their decision and reinstate the Heeling Autism program to its current model. And if possible to put even more resources towards the autism service dog program.

And when you sign, comment, and share the petition you'll see a lot of the other comments.  And you'll read a lot of negativity.  Yes, things have gotten a bit nasty over at GEB.  There has been a lot of staff turnover and turmoil.

Just last week the long time head veterinarian was abruptly fired.  He worked at GEB for 26 years and knew every dog, and every dog recipient and their family (both the dogs for the blind & the autism service dogs).  

Many of us think that his firing is in retaliation of this petition as his wife is the head trainer of the Heeling Autism dogs, one of those amazing trainers I wrote about above.  

But we feel that it's not too late to turn this around!  Please sign, comment, and share the petition like crazy.

Thanks!  Now here's two more cute doggie pics for ya of the king and his princess "Paula"


Summer 2010
Summer 2016

Wait, here's the petition one more time!  #SaveHeelingAutism  Please sign, share, tweet, etc!  You can also reach the petition at www.saveheelingautism.com

THE END











-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Friday, July 1, 2016

7 Secrets to Going On Vacation w/ My Autistic Son








People are always asking how we do so well on vacations with our severely autistic son.  They see our pics from the NJ Shore overnight getaways and pics from our week long upstate NY Lake vacation and marvel at how we do it.

Well I'm here to tell you that it is not easy.  It takes a lot of work and planning and mental strength and patience, but over the years we have gotten much better about it.  

Here's a few of our secrets.  Most of these secrets are more about the parenting aspect of things.  How to survive.  :-)  And most of these secrets pertain to our longer getaways.  The overnights we've gotten better about, but the week long getaways need a lot of...

1) Planning, Planning, Planning.  
We take a lot of stuff with us, particularly when we go away for that whole week.  For the weeks leading up to our trip our home office becomes wifey's staging area.  Here's a pic. 


And the place we stay has a kitchen so we bring LOTS of the king's favorite foods.  



Every year on Facebook I take a picture of our minivan trunk before we depart and it's quite hilarious how much stuff we bring for 2 adults, 1 kid, and 1 service dog.  Here's a pic from last year. 

If you look closely you'll see a toaster oven?  Yeah, we even bring our own toaster oven.  

Yes, we have a full kitchen in our hotel, but it lacks a toaster oven, and boy a lot of the king's meals are made in a toaster oven (hot dogs, chicken nuggets, waffles, etc).  

Lately we've been feeding him in the room before we head to a restaurant so that at the restaurant maybe he'll just watch a show on his ipad and let mom & dad scarf down a meal.


You can also see his big green bouncy ball in that pic of our minivan.  What you can't see is that the backseat is filled with the king's favorite books and toys.  Whatever they are at that moment.  And then when we get to the place wifey sets up his room with all the stuff to make it feel at home.



We also bring our own sheets.  One for familiarity, two because wifey gets skeeved out by hotel sheets sometimes, and three in case the king has any accidents.  We also put a sheet on the couch in the living room in case 

his majesty wants to lick the couch, he's licking our sheets, not their 20 year old couch.

Lots of planning goes into our week long getaways, and wifey does MOST of the work, but I do some which brings us to #2.


2) During the Planning Make Sure You Each Have Your Role.
Wifey does everything related to the packing and planning for our trips.  I have five very important jobs.  

(1) I'm in charge of gathering and packing all the king's medicines and our medicines together  


(2) I'm in charge of gathering & packing all of the toiletries -- soap, shampoos, toothbrushes and toothpaste, condoms :-), hair brushes, hair dryer, etc. 

(3) I get all the electronics together (Ipads, laptops, phones, cameras, dvd's) and make sure we have enough chargers for all of them.

(4) I pack the minivan with all of this crap.  Let's see another pic of our packed minivan...


(5) I do all of the long distance driving.  (wifey does most of the driving during our week away)

Those are my 5 jobs.  Wifey does everything else.  And lately we've been much better about trusting the other person to do their jobs without asking questions or second guessing each other.  Except that one year when I forgot the melatonin!!!!  OMFG!!  :-)











3) Familiarity 
Again, these are secrets that work for our kid.  So your kid might be different, but we stay at the same place every year.  It's not the fanciest place.  It's pretty down & dirty (hence why wifey wants to bring her own sheets), but it's familiar to us.  The king isn't one of those kids who freaks out when things aren't the same way every time, but over the years we've tried to stay in the same room every year.  Room 131.  It's a 2 bedroom efficiency and the king's bedroom is always the one on the right.  

It's nice to watch my son enter a place that he hasn't been in for a whole year and immediately know where everything is and know which room is his and what is expected of him.

4) Convenience
The other reason we stay there is that it's very, very convenient.  Our room is just steps from the lake.  I can be a bit of a cheapskate and years back I tried to save a few dollars by staying in a less expensive room that was farther from the lake.  However, with an autistic & epileptic kid who can have a meltdown, potty accident, or seizure at any given moment, it's really nice to be steps from our room.

5) Deal With The Kid That You Have That Year
My wife and I said to each other on one of our drives up to the lake, "it's like we show up to the lake with a different kid every summer" and it really is true.

And we try & structure our vacation activities around what kid we have that year.

For example, in the real old days, in 2009BM (Before Melatonin), we had a kid that would get up at the crack of dawn and stay up really late and couldn't stand being in our room/cabin.  So he would have us out all day long.  We'd be at breakfast as the restaurant was opening up.   We'd spend days at the amusement park because he wanted to be on the go all the time.  And we'd have to drive around for an hour at night to get him to sleep in the car before carefully transporting him to the room.

And lately since my son has matured he is a lot more mellow.  And is a lot cooler with just relaxing by the lake so that's what we mainly do.

And he probably sleeps too much while on vacation, partially due to being a teenager, and partially due to his seizures / anti seizure medication.    

So the past couple of years on vacation he's needed a late morning nap.

The first year that happened wifey & I got frustrated. "He's missing out on valuable sunshine and lake time!"

But last year we decided to respect his late morning nap and work it into our schedule. 


We try to do some stuff together before the nap (lake time, breakfast out, etc) and then give him every opportunity to nap when we get back. 

And during his 60-90 minutes of slumber we use that time to our advantage.  

I might go for a run while wifey watches him, or wifey might do yoga lakeside while I watch him
, or maybe we'll use that time to "made sandwiches" while he's napping (that's code for something :-)










6) Don't Compare Yourselves to Typical Families You See Around You / Deal With The Hand You've Been Dealt. 

The big village near where we vacation is a big throwback to an old days vacation spot. There's mini golf, arcades, ice cream parlors, etc. All things my son hates or is indifferent about. 

Some years we travel up with other family members.  

And after dinner the conversation always goes to "should we do GoKarts tonight or mini golf" 

Meanwhile my kid is yawning like crazy and annoyed that he's not in bed already. 

In the old days I would feel sad or jealous of all the stuff they were doing...all the stuff that my guy was missing out on...

But I guess I've matured (or my antidepressants are REALLY working) cuz the past two years I am fine with the fact that by 9:00pm the king is asleep and wifey & I are in our room in our PJ's watching "Everybody Loves Raymond" repeats on TV Land while some family are in the village at the arcade. 

I think I realized that I was the one who felt sad. I was the one who was jealous. My guy 
wouldn't like most of that stuff. So he really wasn't missing out on anything.

And the same goes for other families that we come across. 

Am I jealous of the father that I see going out fishing with his son at 6am?  Yes. 

Am I jealous of the families that I see that rent boats & go water skiing? Yes. 

But that jealousy only lasts for a few minutes whereas years ago it would have lasted for a few hours

I guess that's because over the past few years, I've come to the realization that fishing, water skiing, etc is not part of the hand we were dealt. We were dealt the autism & epilepsy hand.  And I've come to accept that and try to have the best vacation we can have. And do mostly things according to my son's likes and needs while once in a while being selfish and pushing him out of his comfort zone to do something we like, like a dinner out at a restaurant or fireworks. 


7) Remember.  You Are On Vacation Too!
You are on vacation too, damnit!  Put your feet up when you can! 


Throw your diet out the window!  Eat some bacon, barbecue some burgers, have some adult beverages!  And "make some sandwiches" as often as you can!  :-)

That's all I got.  That's 7 things that help us survive going on vacation with our 13 year old goof ball with autism & epilepsy.  

We'll be going away to the lake again the last week of August.  We shall see what this year brings and if I come home with any new secrets!

THE END





-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!


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