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Uno Mas! Message BoardThis is a moderated board, inappropriate comments will be removed.
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| Name: | Michelle Mc | ||
| Child: | Webmaster, Uno Mas! | ||
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ANNOUNCEMENT: THIS MESSAGE BOARD IS NOW READ-ONLY. This message board is now a read-only board, due to the fact that most activity is taking place on the Bulletin Board. Moderators are concerned that visitors posting here will be overlooked and feel ignored. We encourage you to post there, on the Bulletin Board, and introduce yourself! Please note that the Funny Stories and Your Story Sections will also be set to "read only" and new sections will be set up for those stories on the BB. Thank you. | ||
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| Name: | kimberly Email: | ||
| Child: | isabella age 4 1/2 | ||
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| Name: | martha Email: | ||
| Child: | Adrian | ||
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| Name: | martha Email: | ||
| Child: | Adrian | ||
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| Name: | Tammy Email: | ||
| Child: | Lewis the Menace | ||
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Seems the BB is "DOWN"... ie; out of service, not accessible, just plain AAARGH..... cant get in there!!! Hmmmm..... Would seem I am suffering withdrawal.... I Seem to rely on Uno BB's existance more than I raealise!!! now Iam sounding silly... Bring back the BB... or fix my connection... Eeeeeerrrrrrrkkkkkk | ||
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| Name: | Connie Email: | ||
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Welcome, nice to have you both here. You may try and post on the BB. Seems these days that is were most people are hanging out and that will be where you both can find a wealth of information. Connie | ||
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| Name: | Jeannette Email: | ||
| Child: | Natalie, 4 1/2 years old | ||
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My name is Jeannette. I am 24 years old and reside in CT with my fiance Ed and our 4 1/2 year old daughter Natalie. Ed found this web site and really enjoyed it. I have been involved in groups and talked about DS to many families after Natalie was born but then loss the interest. Unlike many people's stories, my story has a bit of a twist. Natalie isn't the only one in my family with Ds. I have two brothers, whom both have disabilities which include Down Syndrome(17) and Cerbal Phalsy(30). During my pregnancy, both Ed and I asked doctor's about chances of everything (First time parents, we read everything in those prego books, LOL!). Well, doc told us everthing was going to be ok. (No amio done, too young and peite bod doc said) Well months later we were parents to our beautiful baby girl whose was born with DS (found out after birth). The family was a bit hurt and we share a time of sympathy and happiness together. I was fine and just happy my child was alive and emotinally I was fine with it since DS was already normal for me because my younger brother. I really couldn't be any more blessed than I was and still am. I'm proud and so in love with my little family I wouldn't give it up or trade it if I had the choice too. The last 4 1/2 years have been a little tough at times. Natalie, like most children with DS suffered from heart problems (about 5-6 holes in heart, allgeries to cowsmilk/soy products, formaula, diapers and a few more. She had ear tubes at 15 mos, GI (Sereve Constaption) Othropedics (had leg braces but didn't use them much because she use to try to sit on them while the were on) and much more.... Natalie was pushed by a another child to the ground at daycare about three weeks ago and was limping ever since. Limping is very minimal now. Pedi took xrays of hips, knees and feet, NOTHING! They said maybe bruising inside. Who Knows!!! During xrays we also took some of neck too. We found out she has atlantoaxial laxity which could be causing the limping she had. Two different sets of xrays, nows there's controversy on findings. Surgery is questionable! Will see doc again in three months. Natalie going to Othropedics next week anyway for a check up, more ideas and hopefully braces to improve the over-all body low tone while walking. Does anyone have a child who suffers from sereve constaption(child who won't go longer than 4 days to a week, I need 411) and a child who suffers from this laxity issue too. I would really appricate some advice or even some ideas on which way to move next for Natalie. Have a great weekend! | ||
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| Name: | KarenM Email: | ||
| Child: | Hailey 12 | ||
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| Name: | polly spencer Email: | ||
| Child: | kimberly marie spencer | ||
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hi how are u doing everyone? i hope that anyone who would liek to chat withme casue i am deaf mother to my daughter kimbelry she is 14 years old now .. anyone who begin intereting in talk with me about it? let me know thanks.. take care | ||
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| Name: | jackie | ||
| Child: | Emily 27 | ||
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Jackie Jackie | ||
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| Name: | Carolyn Gabriel Email: | ||
| Child: | Christopher Age 46 | ||
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| Name: | Susan | ||
| Child: | Emily, age 15 | ||
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Susan | ||
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| Name: | Ed Email: | ||
| Child: | Natalie | ||
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| Name: | Carolyn Email: | ||
| Child: | Christopher 46 | ||
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| Name: | Carolyn Gabriel Email: | ||
| Child: | Christopher Gabriel | ||
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| Name: | Carolyn Gabriel Email: | ||
| Child: | Christopher Gabriel | ||
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| Name: | Connie Email: | ||
| Child: | Collin | ||
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Try to get into the BB now!! Connie | ||
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| Name: | steff Email: | ||
| Child: | olivia 9 | ||
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| Name: | Cheyanne12 Email: | ||
| Child: | Noah, 3 ds | ||
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Girly, if you are around please email me. I've been wondering how you and your family are. Thanks. | ||
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| Name: | allisa | ||
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THought I'd say hello out here to you 'til you get back on the BB! LOL Are you missing Kyle ? I'm sure he's having fun ! Glad to hear Liv is well.....see you soon ! | ||
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| Name: | STEFF Email: | ||
| Child: | olivia(9) | ||
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Steff here, I had to relogin to the bulletin board and am now awaiting approval from a moderator/administrator to get back on there. Anyone??? LOl... I was hoping to respong to Lauras post on the BB regarding sp ed versus inclusion in kindergarten. I have a lot to say and would love to share our amazing school experiences. when it came to inclusion in kinder. if not I will write it here later. Had to change my internet explorer to mozilla firefox. its a much safer browser and we actually got our first virus in years and got rid of it but still am staying with a more secure safe browser. So all my internet explorer favorites and everything was just POW deleted so as not to infect the world. BTW if you have a virus, trojan etc the best way to find free help getting rid of it is from www.tech-guy.org/ Got the virus off with their huge help as I never would've been able to on my own. So thanks to tech-guy!!!!!! You saved my computer..heehee..... Olivia is great. really into making out and kissing though now and man its tough to not laugh but I keep imagining her as an adult doing the same thing and it snaps me right into my non-laughing senses. . school is good she is getting to be such a smartie pant. The language is awesome as usual. What a huge command of the english language. My boy Kyle is at a sleep away camp with his 5th grade class well actually only 40 of em go away for a week(5 school days) and camp at a school districts campsite in the middle of the l.a. forest. I've never been away from my kids for more than 2 days so its gonna seem so weird tonight when hes not here. he'll have a blast. What else? nothing really just seem to be working a lot at the hospital and getting extra hours in. I am loving helping the kids get thru the awful procedures. Its amazing what knowledge and participating in their own recovery can do for a childs fear and self-esteem. they feel empowered in such a world of disempowerment. Its been great fun and a huge learning experience for me gotta go c ya. hey remember can someone approve me for the bb?? THANX and many many hugs steff | ||
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| Name: | Susan | ||
| Child: | Emily, age 15 | ||
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Welcome back to Uno Mas!!! My daughter will be 16 in just a few months. I'd love to talk! Most of the members here use the Bulletin Board a lot more often than this Message board. Please register there and join us!! Susan | ||
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| Name: | Sue Email: | ||
| Child: | Kelly, 16 | ||
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| Name: | Natasha Email: | ||
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I am currently doing a project on children with Down Syndrome for school. I was wondering if anybody could share some "coping strategies" that you have used, to "deal with" having a child with Down Syndrome?? Thank you for your help! =Natasha | ||
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| Name: | Susan | ||
| Child: | Emily | ||
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Welcome to Uno Mas!!! We tend to read the Bulletin Board every day and respond to questions there pretty quickly. If you don't mind, please register for our Bulletin Board and ask your same question there. Looking forward to getting to know you! Susan | ||
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| Name: | Robin Email: | ||
| Child: | Nathan Age 5 | ||
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thanks | ||
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| Name: | Alix Moore Email: | ||
| Child: | Caleb 5months | ||
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| Name: | Monica Burgess Email: | ||
| Child: | Drew | ||
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| Name: | allisa | ||
| Child: | erin | ||
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Hope this helps.....after all my lame attempts ! | ||
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| Name: | allisa | ||
| Child: | erin, 7 | ||
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| Name: | allisa | ||
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This is a great question. It has been discussed just a few weeks actually. Here is the link (above) to the Bulletin Board so you can see a few different responses. My duaghter is 7....fairly close to your son ! | ||
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| Name: | pat Email: | ||
| Child: | jeremy | ||
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| Name: | Michalene Jibben Email: | ||
| Child: | Heith | ||
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| Name: | MB | ||
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I also suggested getting rid of the pull-ups. I would guess the medications would have to stop so that the urge to urinate would not be masked by the medication. I would give any new program 21 days before making an assessment. Good luck! MB | ||
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| Name: | MB | ||
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1. He is 11-years-old. No more pull-ups. Throw them away. If he is going to wake up, he can go urinate in the bathroom. This is a big step towards his parents letting him know he is responsible for himself. He may wet the bed. If he does, he is to change the sheets. No one is to be angry. He simply cleans up the mess he made. No big deal. 2. Turning the thermostat down to 62 degrees at night makes a warm bed more inviting than a freezing room. 3. If he is waking up because of nightmares, get a dog to sleep in the room with him. 4. Let him leave the lights on so he knows no one is lurking in the room. 5. Decide what he is allowed to do if he wakes up. Our son now has a computer (without internet), a television (without cable), a vcr/dvd player and playstation all in his room. He has headphones to use at night so that no one hears the electronics. 6. He is allowed to wake us up only if he is sick or is scared of a thunderstorm. 7. He used to wake us up every time he woke up and we finally started locking our door. We do not lock our door any more because he understands we will not respond unless he is sick or scared of thunderstorms. 8. If he insists someone sleeps with him, then make it uncomfortable for him. He will sleep on the floor while you sleep in the bed. No talking. No lights on. I would start this on a long weekend. The next day he has to help with lots of chores because you are too tired to do them alone. He has kept you up. Everyone in the house must take a 90 minute nap every day because they are too tired from your son waking up the household. 9. Plan a favorite outing. Cancel it because you are too tired. Do not hold it out as a carrot. Simply cancel it because you are too tired from being woken up by your son. Shrug your shoulders, show no emotion. It is just a fact of life. Once I stepped back and started analyzing my own behavior, I realized I was expecting nothing more than baby-like behavior from my son who was not a baby. I allowed the Down syndrome to completely intimidate me. I do believe my son will have life-long sleep issues. But at age 15, he is managing these issues very well. I know this is a hard pill to swallow, but if he is not expected to manage his toileting, I do not believe he will manage his sleep issues either. I believe (with absolutely no research backing me up) that a child with Down syndrome who is completely self-reliant (no prompting whatsoever) with toileting easily makes other leaps into self-reliant behavior. My son did very well for a week or even a few weeks and then would revert back to no sleep for 3-5 days. This usually preceded a developmental leap. Once he acquired the new skill whether it be expanded language, riding a bike, swimming etc..., he then would crash for a couple of days and sleep 10-12 hours. Hope this helps. Hope I didn't scare you. Yes, my son tells me every day how much he loves me. He loves his independence. He attends regular sleepover camp in the summer and travels with the high school sports teams he manages. And, we sleep very well! | ||
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| Name: | Bezil Email: | ||
| Child: | fertas | ||
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| Name: | Monica Burgess Email: | ||
| Child: | Drew | ||
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| Name: | jackie | ||
| Child: | Emily age 26 | ||
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Welcome back....... Jackie | ||
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| Name: | Connie Email: | ||
| Child: | Collin 7yrs | ||
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Shawna, the world has stopped rotating!!! You are back!!! Long time no see!!! What were you known as....the Queen of Talk or the Queen of Shopping, Queen of something just can't remember...LOL It is so nice to get an update on you and your family. I hope to hear more from you now. You may also want to post on the bulletin board, thats were most people are these days. Connie | ||
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| Name: | Shawna Email: | ||
| Child: | Michael, age 15 | ||
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Now, a few of you who have been at Unomas for about half of forever will possibly remember me and my boy Michael...if you think waaaay, waaay back! Ok, done being funny. For most of you, I'd better introduce myself. I am Shawna, and live in Bluffton, Alberta, Canada. My youngest son Michael has Down Syndrome. I originally started posting here when he was about seven. Man, the time sure flies by! I am not too sure when I last posted. Michael is doing pretty well, going to a public high school. There he is in the Resource Room full time. They have a program in the schools for special needs kids called LAWS - Life and Work Skills. I guess he's about at a six year old level, more or less. Currently he is my only child at home,as my older children have all moved out and on with their lives. Susan, Patty, Robin ...it's nice to see you are still here. I hope the kidlets are doing well. For those with younger children, I so remember when Michael was younger and wondering how his life would turn out. In some ways he's not where I'd hoped he would be, but he is still a great kid, and (I think), the favorite sibling for his brother and sisters. The other day one of my daughters phoned home, and all she wanted to do was to talk to her little brother. He does enjoy talking to them on the phone. It's kind of funny. He'll be on the phone and say something like "Look, Janine - snow!" as he is looking out the window at the snow. One time he was watching the movie "Finding Nemo" when talking to a sister on the phone and proceeded to give her a play-by-play of what was going on, complete with sound effects. It was pretty funny. One thing Michael does that can be frustrating or funny, depending on my mood and what we need to do is what I call the "turtle walk" or maybe "snail walk" would be a better term. I gotta say, I have never ever seen another human move as slowly as he can when he chooses. I mean, seriously - if he went any slower, he'd be going backwards. Sometime I am going to try and video him when he's doing that. Well, I'd better go. God Bless, and hang in there. Shawna | ||
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| Name: | melanie Email: | ||
| Child: | sara | ||
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www.frankiesfund.com without the "s" it won't work. thanks Mel | ||
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| Name: | melanie Email: | ||
| Child: | sara | ||
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They are a really good charity, who sells calendars and cards with pictures of some Down syndrome kids that are local in Illinois. Thanks everyone. Mel | ||
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| Name: | Kenyatta Email: | ||
| Child: | Jordan | ||
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Thank you for the welcome and the suggestion to post this question on the bulletin board. I have and hopefully someone can help me out. Thanks again! Kenyatta | ||
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| Name: | Susan | ||
| Child: | Emily, age 15 | ||
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Welcome to Uno Mas!! Please post this question on the BB....you can begin a new thread and ask for advice about this there. Most of the members read the Bulletin Board faithfully. I hope you can get some advice. Susan | ||
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| Name: | Kenyatta Email: | ||
| Child: | Jordan | ||
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Thank You Kenyatta Columbia, SC | ||
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| Name: | joanna Email: | ||
| Child: | leo collins | ||
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Thanks, i have been to the bulletin bit and posted onto their awaiting any replies i have also put lots of little pics for all to see, have a gander if you wish. hope to speak again soon Jo | ||
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| Name: | Connie Email: | ||
| Child: | Collin 7 | ||
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Welcome, It's hard from me to believe I was in your boat 7 years ago. All parenting is rewarding but this has been a very rewarding journey. We also had a child after Collin. She was a surprize in more ways than one. They are almost 26 months a part. She has been very good for Collin. She loves her brother and really pushes/pulls him a longShe doesn't let him slack. You may want to try posting on the Bulletin Board. It seems to get a lot more use. Connie | ||
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| Name: | joanna collins Email: | ||
| Child: | leo | ||
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our son leo is not too obvious in the characteristics and seems to be growing very well above average and i have alot of faith in his developing acheivements. found this site as i feel alone,alot of my friends have children but none with ds would love to chat to others in the same poss as myself. | ||
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| Name: | Susan | ||
| Child: | Emily, age 15 | ||
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Susan | ||
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| Name: | allisa Email: | ||
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I do remember your mom and sister...hope all is well...how old is your sister now ? Come on over to BB and say hello.....there are a lot who would remember your family ! | ||
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