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Post by seansmom on Mar 8, 2014 11:46:30 GMT -5
Hey, where did everyone go? Did everyone head to Facebook?
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Post by wrblack on Mar 17, 2014 10:05:57 GMT -5
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Post by seansmom on Mar 20, 2014 10:13:36 GMT -5
That's too bad. Some of us don't do Facebook. Yes, I saw this was down for awhile. Looks fine now. Thanks for answering.
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Post by laurasnowbird on Mar 22, 2014 9:41:20 GMT -5
Some are still checking here....we need to get the admins to delete the spam posts that are turning up....I think they drive people away.
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Post by andrewsmom on Mar 28, 2014 8:57:05 GMT -5
I still check in here every so often. There is an Unomas chat on Facebook but it doesn't really get to much traffic.
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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 Slowly got more withdrawn while in High School.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 Monique on Apr 5, 2014 1:46:08 GMT -5
OH Michelle, I am so sorry to hear this. I actually havent been on here in probably 2 years and on and off for the last 7. This board helped me so much!! When i found it, my son Jameson was 1 yr old. Now he is 13. I actually came back here tonight because i was trying to find something on Facebook (i am an avid FB person now) that came close to what this board did which was talk about all things that go on with our children. Not just posting happy pictures with no insight to the day to day struggles that us parents have. Why isnt there anything like this on FB?? 12 years ago i had so many hopes for my son. Since then our trajectory hasnt been as I hoped either. He is non-verbal (most likely apraxia)but uses an ipad, he is still being potty trained (still uses diapers) still cant chew food (steady diet of applesauce, oatmeal, yogurt, pudding and the occasional pureed fruit)and most likely on the Autism spectrum (though its been difficult getting a dual diagnosis). But, he is a sweetheart, tries to be independent where he can and still greets me with many smiles and hugs when i come home. It has been a harder road than i was hoping it would be but is a road i gladly go down everyday for my son. I miss all the tips and conversations and help and support Unomas21 gave me in the earlier years and dont think i would have been able to get through it. When my daughter was born (Jasmine) everyone on the board celebrated with me! I still see some familiar names (laurasnowbird) and i havent had a chance to look more because i saw your post first. Thank you for sharing your story, as again, it gives me something to learn and look out for myself in Jameson's teen years. I miss you guys. I wish you would make an Unomas21 fb page. I really do. I hope Casey can find the balance again. xxoo Monique (once an unomas red hot chilipepper poster)
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Post by laurasnowbird on Apr 15, 2014 22:44:40 GMT -5
No one knows better than us that it isn't all sunshine and roses, Michelle. I'm so sorry to hear what has been going on with Casey,and while it's great to be here to offer hope to new parents, we need to support each other in the journey, whether it takes us where we expected or not. I think it is getting harder as Ethan gets older, harder to have him included, harder to know what the right decision is for him, harder to accept that some of these things, despite our best efforts, are not going to turn out as we'd hoped. I've worried about Ethan forever, he has never been the stereotypical happy go lucky kiddo with Down Syndrome. The kids in his school are very friendly to him, but sometimes he pushes them away. I don't understand why, at all! It often seems he is happiest when he is doing things that DON'T include interaction with others, like playing video games or watching TV. We limit his access to those things, and use them as rewards...and continue to encourage more interaction with others, but I do wonder sometimes how all of this is going to turn out. I understand that you don't want to bring us down, but we're here for YOU too!!! Please update more when you can.
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Post by seansmom on Apr 17, 2014 10:29:49 GMT -5
Michelle, I don't know you as I was sporadic on here when Sean was little and then I drifted away when people stopped coming as much. It sounds like you have had a real hard go of it. I can only hope things get better for you all. I get what you mean about not wanting to be a downer but I'd like to think that's what we are here for. To be a sounding board. I have been going through a rough time with my 11 year old and really need to sound off. I've been on a different forum for awhile and they are wonderful people but there are only a few that have adolescents and above. I think the challenges as they get older are different so I hope more people come back here. Not to say that I don't want to talk to people with young kids too because I do! Laura I hear you! Our sons are the same age. I'm going through the same thing. Sean pushes the kids away and then acts up to get their attention. He doesn't really fit in anywhere. He's mainstream but the kids are getting older and not as supportive as they get older and there aren't any special needs classes available to him at this time. I try to get him involved in activities but he won't participate and trying to get playdates started is like pulling teeth. People are just way too busy with sports and family activities. He is also starting puberty and his mood swings are crazy. Anyway, I'm here and will definitely share the hard stuff. I agree that it isn't all sunshine and roses and things get really hard. It helps to talk to someone going through it. And I don't have stinking facebook! Lol. I would be way too addicted if I started that. It makes me sad that people are forced to sign up in order to be involved. One of these days I will cave.
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Post by laurasnowbird on Apr 18, 2014 11:34:02 GMT -5
So far the kids in his class are still supportive, but I wonder sometimes how long that will last. We are very fortunate in the fact that a couple of the girls who live in our neighborhood, and that he has grown up with, are in his class. They are often able to get him to do things his teacher can't! Our piece of luck this year has been that he has a friend with DS who is in his class, and who is his best friend. Cameron spent the night over here for the first time recently, and they had a blast! Are there any kiddos with DS you can find for Sean to hook up with? We didn't foster the friendship or create it, they were in class together last year, and it came about on its own. It strikes me as meaningful that when choosing his "best friend", that Ethan chose someone with DS.
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Post by seansmom on Apr 18, 2014 17:35:06 GMT -5
No. He doesn't have any friends right now. I am going to approach our local DS society and see if we can get some kind of group going. I feel so bad for him.
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Post by TriciaF on Aug 22, 2014 7:15:25 GMT -5
Oh Michelle, I am so sorry to hear all that has been happening with Casey. Thank you for trusting us enough to share. I can't imagine the worry and stress of what you have been dealing with. What was causing the blood clots? My boyfriend has a hereditary issue and will have to remain on blood thinner due to the condition. I will always be so thankful to you for unomas even if you ever choose to cut it loose. It made such a HUGE difference in my life and all the others who came here for support when we often felt no one understood. It was the best therapy ever. You will never know just how many lives you touched by your creation. I remember when we were all trying to write into Oprah to get you and unomas recognized as a difference maker. She doesn't know what she missed! I too, drifted away when life got the better of me....taking care of parents sick for a number of years and both passing away the same year and going through my divorce. I feel so priviledged to have gotten to meet you in Las Vegas, that was such a great trip! Susan just added me to uno chat this week and it was like a family reunion. But nothing beats your message board for long winded discussions that no one but us would be interested in! LOL So, maybe facebook will lead people back to unomas rather than away. I sure hope so.
Quick update on Patrick who is now 14 and in 7th grade. He is doing really well and I am so thankful. But, of course, I am currently fighting with the school district over one of his placements this year...some things never change and boy does that get old.
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Hello???
Aug 22, 2014 7:35:59 GMT -5
via mobile
Post by kittkatt on Aug 22, 2014 7:35:59 GMT -5
There is nothing like Uno. Nothing. I miss the connection, I miss the chats, I miss everything about it. Now that Rhienne is an adult, I need the wisdom of the families who have been where I am going, and perhaps I have something to contribute to those who are headed where I've been. Can Uno live again?
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Hello???
Aug 24, 2014 6:27:07 GMT -5
via mobile
Post by debio on Aug 24, 2014 6:27:07 GMT -5
Michelle I will keep this a bit short as I am pecking on a very small screen right now! I want to thank you and hug you for updating us about Casey. Please know that ALL of us Uno fans (fanatics ?) appreciate your honesty and courage and your efforts to bring about community with a very special group of people, Like no one I've ever met. My Gabe passed away Aug 16 and as you can imagine I am reeling but I have to give you so many thanks. The Uno Mas 21 community was added to his surviving family as that was most appropriate . I am selfish I want you to keep Uno Mas, I want to continue to share my story and listen to yours. A huge chili pepper hug
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