Tuesday, December 15, 2009

A Christmas SURPRISE!

Last night I was reading over Max's weekly review sheet from school. It's always helpful to see what they've been working on so I can talk about those things with him here at home. Last week was brought to us by the color red, the number 17, the sign for "snow"....and working on A Christmas Surprise.

I asked Max about each these things, and he got so incredibly excited about the SURPRISE! that he nearly jumped right out of his socks. He kept exclaiming "PIES!" (his version of "SURPRISE!") while beaming from ear to ear and jumping around with glee.

We always joke that our secrets are safe with Max. And when he truly does have a secret, I never ask him to tell me what it is. (Partly because I don't think he would be able to tell me, but mostly because it just isn't fair to tempt him to spill the beans like that.)

But last night, I did.

We were talking back and forth about this fabulous SURPRISE! over and over and over...and finally I just asked, "What is it??"

He yelled, "CAKE!" and then promptly fell off the stool in all his excitement.

His delight was so pure and the novelty of having this SURPRISE! just wasn't wearing off, so I did what I always do at moments like this -- I pulled out the camera for some video footage.

A Christmas Surprise! from Jujyfruit on Vimeo.

I have no idea if the surprise really is cake (as he told me off camera), or if it is a mysterious Christmas-related item that sounds like "Kai-ooo!" (as he told his dad in the video), or if it is something altogether different.

But I can tell you this: I'm really eager to find out. His excitement is contagious!

Also, I wanted to point out that this video captures another one of Max's enduring (and endearing) quirks -- his confusion about using the pronouns "you" and "me." It's an oddly circular grammar rule and our attempts to correct his usage sometimes turn into little "Who's on first?" comedy routines.

Think about it -- how DO you teach that? Modeling doesn't work, because what WE say is always the opposite of what HE should say. My brother actually tried switching them once, saying "you" as he pointed to himself and then "me" as he pointed to Max...but then Max mimicked, just the way we always want him to, and the pronouns were still exactly opposite.

Oh, to get inside that brain of his!

Tuesday, December 8, 2009

Back to the Basics...and True Mom Confessions

Max was sick all weekend and stayed home from school on Monday. It's not often that he and I are home all alone, just the two of us, for an entire day.

True Mom Confession: I sort of like sick days with kids. I mean when they aren't TOO sick and miserable, of course. I'm talking about those sort-of sick days, when they are almost better, but not completely. They're bored from all that time spent feeling lousy and laying around and watching TV and sleeping, so they're totally ready to DO something. But at the same time, they're still feeling kind of fragile. That means they are highly moldable. Snuggle-able. Content. Energy is low, but connections are high. They're glad simply to be feeling better, and suddenly realize they can reap the benefits of all that precious one-on-one time. Don't get me wrong -- my kids get vaccinated and we wash hands frequently and if you have the flu you will definitely not be welcomed here! I'm just sayin'...a slight illness now and then is actually kinda nice. Does that make me a bad mom? (Or just an honest one?)

So anyway. Monday was a day like that. The worst was over, Max was happy, the house was quiet, his usual tv shows had FINALLY lost their allure. It was the perfect day to go back to the basics, where basics equals all those good things I used to do when the kids were little that I don't really do anymore.

The most exciting thing we did was making homemade play dough. Max enjoyed the cooking process (though was very upset that I wouldn't let him stir the burning hot pan of ingredients or play with it immediately), and he had fun choosing which two colors to add to the finished product.

We played with the dough for a long time. Each time his attention began to fade, I pulled out a new trick. Stamps! Knives! Cookie cutters! Look -- PRETEND PIZZAS! He requested that I make violins, which I actually managed to do. Then he wanted me to make his favorite Christmas song. (That one totally stumped me.) I distracted him by making one of his other favorite things, instead -- his name.

This was a good day, illness and all.

Just a nice quiet day with a boy and his mom.

And some play dough.

Having said all that, it's now high time for Max to go back to school.

*Giving him Sudafed and quickly wiping away the tell-tale line of snot as I push him out the door and wave merrily at the bus driver.*

Because here's my other True Mom Confession: I really, really, REALLY love school days, too.

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Monday, December 7, 2009

Wordless Wednesday: Chex Mix....for Breakfast?

(Sure, why not?)

(Yep, corn nuts, garlic salt, and all...!)

(Signing "X")

Saturday, December 5, 2009


The string incident should have been my first clue. Yes, Max is sensitive to strings, but such a STRONG reaction should have made me realize he was feeling slightly "off" in general.

Clearly, the runny nose was a second clue. But it wasn't that bad. (As I said, it was clear. heh.)

So there were signs. But none of them was a flashing red arrow.

But then I happened upon this scene:

THAT, my friends, is a Flashing Red Arrow. (As well as one of the saddest little scenes I've come across in a while.)

Max loves his videos with a passion. It's a loud, messy, hands-on, interactive, busy type of passion. For him, watching videos is practically a sport. We are constantly reminding him to pick ONE movie, to turn down the volume, to back up, to sit down, to LEAVE THE BATTERIES IN THE REMOTE, and COME DOWN FROM THERE!

But today he was in a dark room. All by himself. With a barely audible soundtrack from one silently spinning DVD. He was perched on a hard ledge at the far opposite end of the room, quietly rubbing his shirt seams. He hasn't made a single peep, yet the message is loud and clear.

Max is sick.
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Friday, December 4, 2009

The Only String We Have to Fear...

Strings, yarn, dangling ties, long fringe -- they're all banned in our house. The reason is simple; they make Max puke. It's not enough just to keep the offending strings out of his face or away from his fingers, either. He gags on sight alone.

Today I wore a new sweater. (You already see where this is going, right?) I put it on after Max left for school this morning, so didn't give much thought to the draw strings dangling so flamboyantly and offensively down the front. The sweater is a basic gray, zip-up, hoodie type --the kind of thing I often wear -- so I promptly proceeded to forget about it, actually. I wore it all day without a second thought....until Max got home.

I was standing in the driveway to greet the bus, like normal. And he started down the stairs, like normal, but then something changed. He gave me a weird look and then he stopped in his tracks, refusing to budge. I didn't catch on to what was happening, so I moved in even closer to grab his hand and coax him on down the stairs, tugging at him while I rolled my eyes and chatted cluelessly with the driver. Then Max stepped down onto the driveway, turned dramatically away from me, leaned over, and puked. Repeatedly.


In that split second, I suddenly realized what the problem was and grabbed my strings, tucked them out of sight, then wrapped my arms around myself to keep everything firmly in place and securely hidden. Max followed me -- warily, at a distance -- into the house while I assured him we were going straight to the scissors to cut those strings off.

Max hovered near the sink (just in case) while witnessing the operation, and then continued to give those strings the ol' stink eye while I quickly photographed them lying on the counter. (What? It only took a second!)

Order has been restored. All is well. Nevertheless, we have officially upgraded our household security alert to Code Orange. We urge you to go about your regular business, but PLEASE, remain on the lookout for any suspicious strings in the area and report them to your nearest authorities! Thank you.

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Thursday, November 26, 2009

Happy Thanksgiving

Don't you love craft projects that your kids bring home from school? I do. (Seriously, I do!) I especially love this turkey that Max brought home because I can tell he really did glue those feathers on all by himself.

May your day be filled with thanksgiving & laughter, friends & family....and syrupy waffles. (grin)

Sunday, November 22, 2009

TapToTalk for Nintendo DS!

(click the button to visit the product website)

Last night I was browsing on the Teaching Learners With Multiple Special Needs blog and saw the most intriguing post -- Two Ways to Make Nintendo DS an AAC Device. (Three cheers for Kate!)

I have been scouring the web for more information and have decided that this might be IT, you guys! This might be exactly what we've been looking for! It runs on a Nintendo, people. A NINTENDO!

You have heard me repeatedly grappling with the issue of communication, and with the frustratng and overwhelming task of finding an appropriate AAC device for my son. And, honestly, this is the first thing I've seen in several years that I am ready to BUY.

Here's why.
  • First of all, it has a dynamic display.* We've tried devices in the past that have only one level, but they are way too basic for our purposes. We've tried devices that can switch between several pre-programmed levels with different printable sheets or cards to swap in and out, but they are impractical (and, again, too limiting). On the other end of the spectrum are the very sophisticated dynamic display formats with so many levels and choices that my son gets completely lost or distracted. The TapToTalk program seems to offer a solid middle ground, which is what we need right now.
*Dynamic display means the user can navigate through levels by selecting options and advancing through screen after screen with increasingly narrow/specific options. Go to the online TapToTalk demo to try it for yourself.
  • I'm listing this second, but it's a major selling point: TapToTalk is affordable. The one-year subscription cost for the TapToTalk service is only $99 -- a far cry from the $7,000-$9,000 price tags we've been dismayed to find on other devices. We already have a Nintendo DS, so for around a hundred dollars we could be set up! Not only does that relieve an enormous amount of pressure for making The "Perfect" AAC Decision, but it also means there's no major funding required, and therefore no insurance, no paperwork, no waiting period, no grant-writing, no approvals, no jumping through hoops, either! (In addition, the company offers a 30-day return policy, so if I'm not impressed with it, I could actually send it back and put that hundred dollars right back in the AAC fund. There's no risk.)

  • It looks doable. I know this kind of programming always takes more time than I expect it to, but there are lots of good online tutorials and it really doesn't look complicated. I could start out with a basic outline for immediate use, and then tweak and edit and continue to build over time as needed; the customizing potential is great. In addition, the program navigation is so intuitive that I know we can hit the ground running and not get bogged down in learning a new language or reading complex training manuals. That's important, because there are very few resources or specialists in this area to turn to for assistance; I am, by necessity, the expert. I can do this!
  • It's replaceable. My son is hard on electronic equipment. I mean *really* hard. He loves hand-held games and players....but it's still very likely that he will get too rough, or throw it, or drop it, or mess with the hinges, or pull on the cords, etc. (We have a Nerf protective shell and screen clings for ours, but I am still worried about those fragile hinges....) But this is basic, light-weight gaming equipment we're talking about! The hardware (platform) itself could be replaced, and the software is accessible online. That means the content can be downloaded again if anything goes missing. Breakage would not be a major tragedy; I really like that.
  • Nintendo DS is a familiar platform for my son. He can already navigate on a Gameboy, and he's watched his older brother play on a DS many times. I'm confident he can figure this program out very quickly. In addition to being small, portable, and readily available, this system would also let him be just like his brother. (That's highly motivating stuff, right there.)
Is anybody else out there as excited as I am? I can't wait to get my hands my son's hands on this!

I have no idea whether this program will prove to be a disappointing flop, a valuable stepping stone, or a permanent solution for communicating with our son...but I am absolutely thrilled to discover TapToTalk as such a wonderfully practical and accessible AAC option!

Thursday, November 19, 2009

Losing My Marbles

I'm going to tell you about a dream I had last night. Because everybody loves that! (I'm saying that tongue-in-cheek, of course, having finally un-glazed my own eyes after an extremely detailed recounting I was just forced to listen to over breakfast.)

Seriously, I do realize that making you read about my dream is kind of weird, but I'm going to do it anyway. I'll keep it short.

This happened, that happened, another thing happened...and then I found myself leading Max through a crowded balcony to go sit with someone I could see about halfway up. The balcony was in a church, and the church service was in progress. It was very quiet, and we were facing rows of people, and I was trying to make our entrance as discreetly as possible.

Now the thing that made this whole scenario really challenging (and dreamlike, and worthy of repeating) was that Max kept turning into a marble.

The balcony was full of pews and steps and hard, echo-y floors (not to mention all the people with their feet and purses and WATCHING EYES) and my marble just kept rolling out of reach, ricocheting, dropping loudly down the stairs, and landing in the darnedest places. I kept shuffling through areas and reaching under people's seats to retrieve my little marble, and would set it back on track, only to have it roll away once again. I didn't know why my marble wasn't following me better through that maze of balcony, but I kept trying again and again and again.

The entire incident was confusing and frustrating and embarrassing and thank goodness, I woke up.

(Don't really need a dream interpretation manual for this one, eh?)

Incidentally, the photo at the top of this post is one I took a couple weeks ago after noticing the bathroom door wasn't shutting correctly.



This has absolutely nothing to do with my son or microcephaly or anything at all, really, but I just realized that I accidentally typed "viola!" instead of "voila!" back there. I couldn't help myself -- I HAD to go back and correct it.

But now I have the giggles and almost wish I had just left it alone. I mean, who couldn't use a little laugh as they randomly stumble across that typo over time, right?

I'm thinking about adopting it as my new go-to exclamation. It's clean, it's catchy, it lends itself well to dramatic pronunciation, and it works to express everything from breathless appreciation ("Ooooo, Veeeeohhhhlaaaa!") to an angry expletive ("Oh Vi-O-La!!") -- or even an insult ("They don't know VIT from VYE-OLA!")!

Viola. heh.

Wednesday, November 11, 2009

Spackle & Patch

I decided I really need to go back and fill in some of the cracks and holes in this blog. So, I just finished up a bit of site repair and filled in some of those neglected spots with a few old posts I'd been sitting on for no apparent reason. (I mean, other than reasons like...hitting the spellcheck button seemed too exerting, or the post had no ending, or I fell asleep instead, or something.)

But -- voila! I deemed them "complete" and posted them.

Where can you find these virtual spackle & patch editions? Just scroll back.

Or, if you prefer, use this handy dandy guide:

1. We saw chicks.
2. Siblings had issues, part seventy-two.
3. We went to the zoo.
4. Max went to another zoo.
5. Max got a swimsuit.
6. We went on vacation. (In progress)

There are a few other posts that I'll be finishing up and adding in real time, because they didn't seem chronologically significant. (So if you notice Max's teeth randomly falling out and re-appearing, or his hair growing with bizarre speed, don't be concerned.) It'll all work out in the end.

Wednesday, November 4, 2009


Halloween was fun this year. Max totally "got" trick-or-treating this time, and his excitement was rather contagious.

(Plus, he loved his costume -- Steve from Blue's Clues, who else??)

We walked around with him for about an hour. (Or I should say, we followed him for about an hour!) He was on a mission -- cutting through yards, scooting past small children, stomping up porch steps, eagerly gathering treats.

We reminded him repeatedly, "Walk! Stay on the sidewalk! Only ONE! Say 'thank you!'" And though he would forget intermittently, he would get back on track and followed through amazingly well. Actually, the biggest problem turned out to be that whenever he spotted a live flame, he tried to blow it out. (He did manage to at a couple of houses.)

He managed this long walk ALONE -- passed the test with flying colors.

He loved watching the kids walk by, and would get up verrrrry close and curious with the little ones.

Ben's brother and friend posed in character...and Max followed their lead.

The moving decorations were favorites of his, too -- he would try to peek under ghost sheets or stick his hand in the rattling bones or poke the moving eyeball. But we were never far behind and kept him moving along.

He loved this interactive candy bowl. The hand flipped down and startled him again and again.

He was thrilled every time we encountered someone he knew. He was greeted with "Hi, Max!" many times throughout the night, and loved telling everyone he was Steve.

We found Sissy!

Suddenly, Max announced that he was all done. He was satisfied and ready to start eating!

It was a fun night.

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Wednesday, October 21, 2009

7 vs. 8

I'm having a hard time seeing Max as eight.

As I watched Max today, I realized that there's a reason besides "birthday grief" that I'm having trouble calling him 8. It's a very simple reason, too.

He looks like a 7.

His body continues to grow (and his facial features do, too), though his head doesn't change much. So there's that. And there's also the fact that the gap between his chronological age and "age-appropriate" behaviors continues to widen each year, so that things that were more easily overlooked in a two-year-old version of Max become glaringly obvious in his 8-year-old self.

When people ask his age now, and I reply, "He's eight," there is a pause that occurs while their wheels begin to spin...and it feels like that pause is now lasting a few beats longer than it did before.

These things are all true, and I could easily go on, but what I'm trying to say is much more literal than that.

I really mean HE LOOKS LIKE A 7!

Seven is all angles and edges and lines and corners, slightly off-balance & a bit awkward. It's long and thin and sharp. It's bendy and tilted and seems to be perpetually aiming somewhere, hurtling towards a vague place just over there. Even in stillness, 7 implies motion. It's hard to capture and difficult to split. It's easily misread. Seven is odd.

But 8? Eight is round and smooth and even. It's perfectly proportioned and bubbling with symmetry. 8 is chubby and full, like babies, Buddha, fresh warm zweibach. It's quiet and still, poised and straight, endlessly balanced, Zen. 8 is easy to dissect and examine, mathematically and visually. 8 is complete, full-circle, finished (twice!) -- and when it gently lies down to sleep, it promises infinity. Eight is whole.

I often look for signs or symbolism that isn't really there. And when I see it, I want to believe it.

So today I'm wondering -- could it really be that simple? Is 8 a sign of things to come?

Magic 8 Ball Wisdom

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Saturday, August 22, 2009

Thursday, August 20, 2009

Here's a D.I.Y. Budget-Friendly AAC Option: The Envue Digital Photo Album

We've had trial runs of several different AAC (Augmentative and Alternative Communication) devices, but don't actually own one yet. As a result, I'm always on the lookout for creative -- (and cheaper!) -- alternatives.

Our current experiment involves the EnVue Digital Photo Album.

I chose the EnVue because of its large, clear 3.5" screen and user-friendly control buttons. I also liked it because it looks like an oversized iPod (which makes it extra-appealing for my son), but it is actually made of plastic and is very lightweight.

(Truth be told, "lightweight" here is implying a bit of "flimsy"...but I have come to view electronics as semi-disposable in our household, so I'm fine with its somewhat temporary feel.) (Oh, and there is also the beware of flying objects problem in our household, so, again, I'm fine with the nice, lightweight flimsiness; it won't do much damage.)

Another feature the enVue has that seemed intriguing is the thumbnail view option (labeled below as "Thumbview"). I like this because it provides another way to navigate through the photos, allowing you to see 9 photos at a time and then select the one you want.

I had planned to load a bunch of photos on the viewer that were loosely grouped by topic (eg., Self Care, Food, School) and then use the thumbnail view to navigate to the desired topic & image. In reality, it didn't work as well as I had hoped it would as the buttons are fairly slow to respond. Max prefers to simply arrow forward and back, pressing repeatedly until he finds the picture he wants. It isn't terribly efficient for quick communication, but it does make for a fun treasure hunting game along the way. And, in the end, he still gets there.

Click on the photo to see all the technical details.

Another feature I like about the EnVue photo viewer is that the memory card is optional, which gives Max one less thing to fiddle with and/or misplace. The internal memory can hold up to 60 photos, which is sufficient for our purposes. The product box contains everything you need to start using the device, including a cable which connects the viewer to your computer's USB port. The photo editing software starts automatically when you plug it in, which I appreciate because it means no downloads or CD-ROM to mess with!

However, I should warn you that the editing software is less intuitive than you might think at first glance.

Screen shot of the photo editing software interface. Looks simple, right?

Problem #1: It is possible to scroll through the photo images without scrolling through the accompanying file name; as a result, you might end up loading the same picture file over and over even though you were clicking on a different image. You'll see duplicates appearing on the right half of the screen if this happens, but if you're trying to select and load quickly, you need to stay alert.

(You're so lucky, getting the added benefit of my experience.)

Problem #2: Photos must be loaded in the order in which you want them to appear; you cannot move or organize them once selected. For random photos, this is not a problem; for a slide show with text or chronological order, plan accordingly! If you forget to include a picture that needs to be towards the beginning, you will have to delete and then reload all the subsequent photos in order to get it up there. (I would have saved a lot of time had I known this in advance! You're welcome!)

Though it would force you to sacrifice some degree of control over the editing that connecting to a computer permits, using the memory card would greatly simplify the loading process.

In fact, I think it would be a wonderful way to send photos back and forth between school and home. It would be quite simple to photograph a class party, or field trip, or other "hot topic" and then just pop the camera card in the viewer to send along with your child. (I'm going to try that method next and let you know how it goes! Maybe it's not as easy as it sounds.)

Want to know what Max is watching? CLICK HERE to find out!

The EnVue Digital Photo Album is no longer available from the official product website, but it is still listed at amazon.com (wide range of pricing, from $19.99 to $67.50!) and at WalMart (currently on clearance for $20).

The EnVue is not perfect, but it is a very handy shape and size and offers remarkably good photo quality -- all at an affordable price! I'm quite excited by it and think it's well worth purchasing at its current clearance pricing. (But if you have $67.50 to spend, I'd encourage you to look for an alternative product.)

I'd love to hear about other products (digital photo viewers, in particular) you come across that would lend themselves well to this type of D.I.Y. portable AAC usage! Any others out there I should try?

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Friday, August 14, 2009

D.I.Y. Communication Device for School

Ready for the first day of school

School started today!

Morning came early, especially after the last-minute, back-to-school shopping rush that came so quickly on the heels of our family vacation. And because last night, after all the school supplies and gym shoes and completed forms had been successfully rounded up, there was still one thing left to do: complete Max's assignment.

His assignment wasn't very difficult or involved. We were simply supposed to send in some photos or something he could share with the class about his summer vacation -- sort of an abbreviated take on the "What I Did on My Summer Vacation" essay from days of yore. It's a simple task for most of us, but when the child doing the sharing is nonverbal, things get trickier.

So this year I had the idea to create a slide show with captions that Max could take with him to facilitate his task. I selected an assortment of digital pictures of some of his favorite things from the summer, then made some text slides to explain a bit about each photo, and loaded them all onto an EnVue Digital Photo Album. (Read all about the EnVue by clicking here.)

Hypnotized by his Back-to-School slide show.

Max was thrilled with the whole thing -- electronics, pictures, summer memories, favorite people, all rolled up into one! We went through the slide show together before bed and again in the morning while he was waiting for the bus to come, and he was prepared. He knew how to turn it off and on, how to navigate through the photos, and he remembered and exclaimed over the activities captured within the photos. (He even started imitating my reading of the text slides!)

It worked really well, and I definitely think it's an idea that warrants further experimentation: using a digital photo viewer as a budget-friendly, D.I.Y. communication device!

Here's the slide show:

Back to School Slide Show from Jujyfruit on Vimeo.

*Note: the images on the viewer are perfectly clear, although this slide show version is pixellated; I think it was a bad upload and will try to correct this!*

I'm also including a clip of Max using the EnVue viewer. His initial excitement is gone, because it was already the end of Day #2 for those pictures. Instead of exclaiming and rushing through the pictures, he's just sort of playing and exploring. Actually, it's a pretty uneventful clip, I realize, now that I'm describing it....but I always think it helps to see something in action, so I'm leaving it on here.

Using the Photo Viewer from Jujyfruit on Vimeo.

Notice how independent he is with this thing? At one point he could use some help, but he quickly pulls the viewer out of my reach so he can do it himself. Also, I like how he verbalizes along with it. He says "turn" as he moves to the next slide (it looks like a page turning on the screen), and at one point he spots himself in the crowd and says "Maash!" (the current version of his name). He exclaimed and verbalized much more initially, but now that the novelty of each photo has worn off a bit, he's in quiet processing mode.

As a side note, did you catch the part where he suddenly turns to me and signs "cracker" out of the blue? Conversations with him do tend to jump around, which is another reason I loved the slide show idea. The storyline and images keep him on track (and help the viewer/listener do the same).

I think this idea is a keeper!

Back to School!!

(my mental image brought to life with magical assistance from cornify & picnik)

I think this one pretty much speaks for itself. (grin)

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Thursday, August 13, 2009

Back-to-School Shopping Excitement

We had a thick back-to-school shopping magazine from Target in our mailbox the other day. Max spent a long time looking through the pages, pointing to things he recognized, or liked, or wanted me to name for him.

He found fruit snacks, letters of the alphabet, an entire page of SpongeBob items (thrilling, that!)....and then he ended up on this page, absolutely delighted by what he had found:

Can you guess what it was that caught his eye? (I couldn't, though I exclaimed over several different items while I tried to figure it out. He kept me on track.)

Here's a closer shot of the same page, with Max pointing to the hidden treasure:

Pointing always helps. Thank you!

He found his name!
It was very small, slightly blurry, and had gone completely unnoticed by me. I was highly impressed.

I think this guy is ready for school! (Which, incidentally, starts back up TOMORROW! Yay!)

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