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Post by Michelle Mc on Mar 28, 2014 13:06:10 GMT -5
Hi. The domain is coming up for renewal and I checked in to see if anyone even uses this board anymore. Surprised to see it looking so strange; and also pleasantly surprised to find that you guys still pop in! I've been on the fence about whether to keep it going, and give it an overhaul. Or let it fizzle out. It's hard to let it go after all these years.
I think every time I pop in here; I say the same thing. I keep meaning to write a post about what is going on with Casey. It's hard to post it here, because I've always wanted this site to be a source of hope for new parents, and Casey's trajectory didn't really turn out that way. I didn't want to write a depressing post; but I feel like I owe Uno Mas people an explanation and maybe offer warning signs for parents to know about, that go beyond normal teenage moodiness.
The short version is that since middle school, Casey became more and more of a homebody. Slowly got more withdrawn while in High School. And after High School, started showing signs of Depression, with a few alarming events such as walking off in the middle of the night and found the next morning four miles from home. In September 2011, he finally revealed to me that he had been hearing mean voices "yelling at him" all the time and "creeping him out." He was diagnosed with Schizophrenia and started taking Risperdal (Risperdione) in Nov 2011. (It took months to get a Psychiatric appointment). A few months later, he ended up in ICU with blood clots in his legs and lungs, and was in and out of the hospital throughout 2012 and 2013.
That's the best I can do at keeping the most devastating and heartbreaking thing I've ever experienced, short. Casey with Down syndrome, was a joy. A unique and funny little guy that brought out the goodness in most everyone he met. But Casey with Schizophrenia is hell. There is no way I can keep this short and describe that. So I will stop there and try to write something more in a separate post. Hopefully something a little more upbeat, if that's possible.
Michelle
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Post by Michelle Mc on Sept 13, 2013 12:22:59 GMT -5
I miss you guys too! I've been wanting to post an explanation of what's been going on with Casey the past few years and haven't had the heart to do it. Doesn't exactly fit in with the overall theme of being an uplifting site and all. Facebook just doesn't feel like the place either.
Just getting caught up on what I've missed here. And then I will try to write something that explains what's up with Casey. Maybe someone else out there is struggling with similar issues; which is truly the theme of Uno Mas, right?
Well, not sure if anyone is still reading, but 'Im in.'
Much Love, Michelle
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NDSC
Aug 8, 2011 12:17:41 GMT -5
Post by Michelle Mc on Aug 8, 2011 12:17:41 GMT -5
I agree the hotel was gorgeous. I checked out the big Bulletin Board there in central area. It had a one or two notes pinned on it ... A real sign of the times huh? everyone is connected by text etc! But the place is huge, I didn't see a single familiar face all weekend! For a split second, I thought I saw you Jackie, I started to jump up to give you a hug and saw from the nametag.. It wasn't you! Casey was a reluctant participant the entire 3 days, much to my disappointment. But miracles don't always happen overnight, and I know he is surely processing what he took in. Somewhere down the road, the lesson will sink in, that he could be having a good time. Too many other thoughts to add right now. We have a a little time for sightseeing!
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Post by Michelle Mc on Aug 4, 2011 8:12:29 GMT -5
Thanks Susan! What a nice surprise! We are leaving for the airport in an hour, to head to San Antonio! I came on here to see if I could "enable" this board, so I could find it on the proBoard iPod/iPhone App. I sure was not expecting such a warm welcome .... that was quite a long shot!! I would say!
Guess how old I am? I'm 50! Ouch! That really hurts to type it. How depressing! But Casey gave me the best birthday present I could hope for this morning. All month long, he has refused to talk about or accept that we are going to Texas. He does not want to go. Does not want to have DS or talk about having DS or spend entire week being reminded of it, for Gosh sake! He would literally cover his ears or turn his head in the other direction, if I even mentioned Texas. You can imagine how much fun it was forking out money for airfare etc, with this scenario going on.
The about 5 am, I was downstairs folding laundry, and Casey comes down the stairs, dressed and ready to go. He apparently has made his peace with the trip, just in the nick of time! I hope he doesn't lose it. Now, I'm really excited about going!
I'm looking forward to seeing some of you guys there! You won't be there though, Susan?
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Post by Michelle Mc on Jul 28, 2011 7:12:25 GMT -5
Hi Laura, Have you heard of Trichotillamania? My non DS son had a short episode of it in middle school, where he woud mindlessly pull out his own hair when he was studying. He mentioned something about the habit to me, and I joked that "only I do that." (because I do the same thing, sort of, mildly). A few days later, I freaked when I noticed a completely bald patch on his head! It turned out that we had discontinued his ADD medication, thinking that he had "grown out of it" when apparently he hadn't. He started back on a low dose of Adderral XR and the problem went away. Which is wierd, because you would think that it would make someone more likely to pick or pull at stuff. But it helps him focus, so he doesn't need to fidget so much with his hands I guess.
Casey had small breakout on his chin in high school, and he got into the habit of always rubbing his chin, which made it a chronic rash. Even though the doctor was able to give us an amazing gel that cleared it up, I can't get him to stop the habit of rubbing his chin, so the rash continues! It's gone on for years now and it drives me crazy. He actually gets angry at me when I try to apply the medication that will make it better.
Another thought I had, is maybe ask the doctor if an anti depressant could help, but now that I think of it , maybe not. Casey takes Lexapro and I can't say that it has improved the chin situation. But it has helped his behavior and attitude some. I know these aren't holistic solutions, but even people with disabilities get depressed and (i think) can have add. I'm a big believer in the power of modern medicine.
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Post by Michelle Mc on Jul 28, 2011 6:42:25 GMT -5
You dumped a room reservation at the resort? Arghh! I came looking a few days too late! Drat!! If you have any suggestions for a good alternate hotel, I could use one. I don't mind paying for a decent room, but I hate that the expensive places also then gouge you $25 a day to park a car, and another $15 for internet access. It seems to me, if they are already charging top dollar for staying there ... all those nice amenities should be part of the package. I've been surprised that none of these hotels seem to have shuttle service anywhere. Even one Marriott to another Marriott. Or the Marriott Resort doesn't offer shuttle service from the airport? That seems odd considering the rooms are almost $400 a night! They sure picked a pricey venue!
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Post by Michelle Mc on Jul 28, 2011 5:46:27 GMT -5
I think I might know what the problem was. It's possible your friend thought she was signing up to the bulletin board, but was signing up to another part of the site that is disabled or read-only? Was she sure she was on the ProBoards Bulletin Board sign up section?
I believe she might have been signing up from the front section of Uno Mas (the home page is a wordpress site, but I had new member signups disabled, as it is only for admins really). I get notifications all the time, as wordpress is a constant target of hackers. But it's always just a program trying to login and spam or worse. I just ignore it, since signups are disabled ... (I thought). I need to check that and see if there is a link to sign up from the homepage that I am missing.
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Post by Michelle Mc on Jul 28, 2011 5:17:52 GMT -5
Hi! This is really nice to read. I was just trying to book our flight and find a hotel for San Antonio and was feeling lost. I thought "I wonder if I can get some help on Uno Mas?" I've been completely M.I.A. (obviously) from here and Facebook, other than work stuff ... and for a moment I had this awful feeling ... "what if no one is there?" ... as in, no one had posted to Uno Mas in months? I'm so happy you guys are still here! I have to read back through a few weeks and see who is going to the conference and if I can find any hotel recommendations.
As far as whether to suggest Uno Mas ... I do feel it offers more annonimity than Facebook. You can sign up with an alias and maybe speak a little more freely about your concerns about your child? I got freaked out last year and abruptly deleted my Facebook account, but I still find pictures and message remnants of that account still active through Google and live on Facebook sometimes, even now! Weird, huh?
On the flip side, that was the dilemma I always struggled with trying to run Uno Mas. To keep it open and easy to use. But anonymity unfortunately also allows people to post unpleasant or untrue stuff. I never could figure out how to balance it without driving myself crazy.
I hope you still recommend it. I'll to put in more effort on mind end out here, if you do!
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Post by Michelle Mc on Jan 16, 2010 17:37:27 GMT -5
Hey Bob, I was noticing the same thing about the group albums. I'd had the new photo album up for about a month, and it didn't seem to catch on. I thought maybe people didn't want to sign up for another log in! It was confusing .. were they logging into the BB? Logging into UM as a whole? Logging with the old photo album username? It also occurred to me that people might already be sharing with eachother on Flickr or Photobucket privately, and that maybe they would just want to share a few of those photos into an Uno Mas "Pool." I went ahead and put those options up on the homepage too. And described the 3 options here: unomas21.com/photo-gallery/But everytime I go to the UM homepage and see all those little mini albums on the front page, I think: 1. This is confusing. How is anyone going to know what they are supposed to do here? 2. This is embarrassing. It's just pictures of Casey and me plastered all over the place! I decided just to let it ride. Maybe one of the options would reveal itself as the undisputed winner. Should become really obvious which service people were already using. But that hasn't really happened. Now, just to make things even more confusing ... I've discovered a whole world of activity happening on Facebook! So that's where everybody is! Honestly, I think that's is going to be the solution. The nice thing about the Uno Mas Facebook page is that people can see it without being a member. But they can't really add to, comment or interact on it, unless they are a FB member and a UM Fan. (not actually sure about that one). Also, as UM Fans contribute their photos or links to their photos ... that person completely controls the privacy for their individual pictures or comments. It's fantastic. It's so much more than I could ever manage to set up on our own. Well, Flickr and Photobucket do the same thing, but ... I guess if you are not already on there ... then, it means yet another thing to sign up for! I think it gets tiresome trying to manage all those logins. Personally, I like that each Facebook user can set their own privacy settings, even for what shows up on the UM Fan page. ( www.facebook.com/unomas21 ) As I've been using FB this week, I keep thinking "How wierd. This is what I was trying to do with Uno Mas back in the 1990's. This was my idea! I thought of facebook first!" (just kidding) It's like those Windows commercials: "Windows 7 was my idea." But remember Dale from EZpics? I was just thinking about how he tried to set up those Uno Mas User Pages for us. Remember those? Seems like a million years ago. Maybe facebook was Dale's idea. Can't remember what my point was now. Oh! The photo albums... I do need to make it less confusing. I may try to make a "master album" that displays the photos of all three options. And people can just go right on using what they already use. That would be neat. Michelle
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Post by Michelle Mc on Jan 16, 2010 17:00:59 GMT -5
HI! Thanks Jackie, for posting those links. I've fallen into the black hole of facebook and I can't get out! Oh my gosh, it's crazy how quickly things happen on FB. More than a little overwhelming. I had set up the page for Uno Mas and then most spent time trying to figure out how Facebook works in general. I could barely figure out how to access the UM page again. By the time I did, I was amazed to find that the page already had almost 40 fans! That was such a cool surprise! (You guys always surprise me with your capacity for kindness and your enthusiasm for UM). One thing I discovered is that if the UM fan page had at least 25 fans, we were allowed to get a shorter url (link) to our FB page. Cool! So now it can be accessed simply through: www.facebook.com/unomas21 Ah, much better without all those slashes and numbers! Things on Facebook seem so fast paced.. frenetic, is that a word? It's a ADD persons nightmare or dream. (that may be me). Suddenly coming on the UM Bulletin Board seems downright peaceful and comforting! I like it here. I'm going to post this and then write another post regarding the photo album/s. Michelle
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Post by Michelle Mc on Jan 16, 2010 16:45:34 GMT -5
I really appreciate the updates here and on Facebook. I hope the news is still good today? I have had Chase and his family in my prayers all week. I don't know if I'm doing something wrong or I missed a message somewhere... but when I try to use the eGreeting to send a message to Robin and Chase ... it's asking for a facility and room #. I went back through previous posts but I don't see it. Are those fields supposed to already be filled in when I click the link? (Pre-populated, as they say).
Michelle
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Post by Michelle Mc on Jan 2, 2010 1:59:52 GMT -5
Oh hey, about that photo album ... funny you should ask! Last month I added a new photo gallery to the site, but was too embarrassed to come on the BB and announce it ... after all the "Photo Album is back!" ... the photo album is down ... the photo album is up!! ... the photo album is gone :-( Well... you get the drill! I figured I would just install it and let people slowly discover it ... but I guess everyone just comes straight to the BB and never even sees the homepage! So Casey and I are the only pictures in the December gallery! LOL. Does anyone here use Flickr? I also created an Uno Mas Flickr account last month and was hoping to learn how to manage a Flickr "Group" account. That way we could all link our flckr accounts together ... but I don't really get how it works and then I just got too busy with the holidays, and unexpectedly closing a business, and unexpectedly opening a business, all in the month before Christmas! What a brilliant idea that was, huh? I still have the archives to the previous photo album, but haven't gotten around to getting them installed. Just haven't had the enthusiam to dive into the technical stuff lately. I moved the site to a new server, and there's some stuff that I have to learn to import the photo album's database into the new format. I'm getting lazy or old or something ... just burning out on learning new techie stuff. I guess that's why the Flickr thing is appealing to me .. let the experts handle the mechanics and constantly changing technology. If we could make it work, we'll probably never have a photo album wiped out ever again! Wouldn't that be nice?
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Post by Michelle Mc on Jan 2, 2010 1:43:49 GMT -5
Thank you so much for all the nice wishes for Casey! I showed this thread to him and he got a big smile on his face and said "cool."
I've been dying to post some hilarious stories about Casey ... I'll have to do that now.
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Post by Michelle Mc on Jun 13, 2009 18:40:20 GMT -5
Hi Char, I wouldn't get too alarmed about the message you received. It sounds like the the system is doing just what it is supposed to do: Send the username and password only to you.
It's very possible that someone with a similiar name, (Char, Charolette, Charlene, etc) couldn't remember how they registered and thought they might have used char. When they find that their usual password doesn't work, they'll click that "Forgot password" link and the system will send out the reminder email ... but they won't get it, because it will ONLY be sent to the email address of the REAL Char! I don't think there is necessarily anything sinister going on. Most likely, just someone who couldn't remember their user name.
We did have problems with the front page recently. But that is completely unrelated to other parts of the site. I have "compartmentalized" most sections of the site, so that if one part goes down, the whole site doesn't sink with it! The Bulletin board is completely independent of the problems with the homepage.
You can go in and change your password, if you like. I can change it for you, as well. But even I can't see anyone's password. All I can do is change it. I will check ProBoard's support forums and see if other people are having a rash of this kind of thing. But most likely, it's just a simple mistake of someone forgetting their username. Rest assured that they were not mailed your information!
MichelleMc
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Post by Michelle Mc on Nov 7, 2004 18:27:44 GMT -5
Tricia,
I just looked into your profile settings to see if I could troubleshoot the problem.
I went into your profile, clicked add/modify (or edit/modify) and looked to see if you had clicked the box "I have my own picture" and then put the url to the photo in the field to the right.
I think this is in the Avatar section. (Avatar is the little picture that appears under your name on your posts).
Anyway, it seems to be blank. You can either post the url here, or email me with it and I'll see if I can figure out why it isn't showing up.
Michelle
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