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Post by paulinemjc48 on Mar 7, 2006 9:38:00 GMT -5
These are just my thoughts so I apologize right from the start if I ramble a bit or don't make it clear what i am trying to say and I CERTAINLY don't want to upset anyone........... There are now 1424 Uno Mas member but how many who post regularly ? I am just sitting here wondering if some of them don't post because they feel like failures. What I mean is all your kids are doing so well but some of us have kids who will never talk, be out of diapers etc, always need 100% care and no matter how hard we try our kids are never going to be bright. As I Mum I am so pleased to hear when your kids do well but also as I Mum I wonder where I went wrong as Nicky is severely effected by DS despite the fact that I have spend many, many hours working with him on various concepts that he has just never been able to grasp . I am not saying he is stupid but at 18 is probably functioning at a 3 year old level and will likely always stay at about that level. Fortunately he doesn't have 'toddler tantrums' ;D, he is a happy, delightful young man who we adore. One of the best things about him being less able is that he has no concept of his illness and that he has a short life expectancy, he accepts being tube fed which a more aware child might not like. Hope this make sense to you all. Pauline UK. P.S. Ryan is one of the less able boys with Fragile X too ---It MUST be me
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Post by Jessie on Mar 7, 2006 10:02:39 GMT -5
Oh my goodness, Pauline!! Please don't feel like it's your fault! You obviously do everything you can for your boys. They know they are loved and taken care of, right? You can't change their medical diagnosis. As far as the other issue you mentioned, yes that could possibly be why some parents don't post, because there is a feeling of insecurity, failure, etc. Remember too, there are quite a few "lurkers" who read all of this stuff but just don't have any desire to post and share their personal stuff - and that's ok. I do know a little bit how you feel - Jason will never, ever be one of the "superstars", and that's ok too. However, there are times that I feel as though the only children that are put in marketing/advertising for our national groups are the "superstars" and it does make me a little uncomfortable because not all of our children are going to reach those same levels. I feel like sometimes that's what is being promoted and it just might make some parents feel like they have gone wrong somewhere with their own child if they haven't progressed as well. It's as if our kids are not truly being represented across the whole spectrum. I know, that's probably not going to be a popular viewpoint here, but that's how I feel about it. I too LOVE to hear all of the wonderful stories of accomplishments of all of the kids here. I am in awe of Debbie. But, it does make me sad, and dare I admit it, a little ashamed that when I post something about Jason, it's not nearly the type of accomplishments that many other people post for a 13 year old. It's like, where are we going wrong?? I post anyway because deep down I know that someone else is in my shoes, or Jason's shoes I should say, and will appreciate hearing the story about him. It's ME that has to get over feeling that way. So, Pauline, I guess I just wanted to send you big cyber hug and to let you know I understand a little as to how you are feeling. I know you have so much on your plate with your boys' medical issues, I can't even begin to imagine how you do it! Jessie Edited note here: maybe instead of the term "superstars" I should have said high-functioning? I wasn't quite sure which term would be best to use to get my point across.
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Post by paulinemjc48 on Mar 7, 2006 10:09:39 GMT -5
Thanks Jessie, that was a great reply and you certainly understood what I was trying to say. I agree with you Debbie is awsome! Pauline
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Post by hidyperson on Mar 7, 2006 10:23:46 GMT -5
It aint you honey - it just IS. I've just been discussing with my roommate ( 36 year old lady with DS ) there is something I'd like her to do ( she's waiting for her handibus) - and she completely refuses to do anything about it, she doesn't care that it will effect others. I'm stuck - the real point is - she's 36 years old and sort of like a 3 or 4 year old that has 36 years of experience. It makes her different than the preschooler, and you can take her places and do things with her, but she's mostly wrapped up in her own little world and that's about it.
To compare - at 18, and now at 36, she doesn’t understand much more than a preshooler either. She’s with us for a reason.
I read a report comparing British special ed and integrated DS students who had graduated and where now around 20. There were differences in academics, the integrated students did better socially behaviorally, but had fewer friends than the special ed bunch. Skills like crossing the street with out being killed or using a microwave was about 10% of the population in both groups. My roommate pretty much matched the whole report.
Advocates properly push for the best and most open environment for people with disabilities, sometimes giving the default impression that everyone else was holding them back. Whether that was true or not, the diagnosis is real, and has real effects, that perhaps the political sometimes ignores or denies, probably leaving many people feeling like you do. That your kid isn’t ‘up there’ or at what you may consider ‘the norm’. I honestly feel the news is skewed on this one. IT's all SWING baby !
No matter what anyone says - you can’t fix it. You just do your best and it’s out of your hands after that.
It aint you, and you’re not alone - probably a lot less alone than you think. -Jeff
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Post by mommygwen on Mar 7, 2006 10:28:16 GMT -5
You motivated me to login and do the long activation code. iF i CAN KEEP my password simple I'll ogin more often. Oh and I don' t yTPE WELL so I .... well ..
I love to read everyone elses posting. I learn alot from you all
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Post by cmedrano99 on Mar 7, 2006 10:38:31 GMT -5
I sit here, I read post after post and amazed how everyone kids seems to jump over mine. Recently seeing, that I need to find one place I can turn to.. but I such a hopper. I just know as mom to 3 kids with DS. Bless her heart.. I am tired of being sorry for. My life is busy and full of challenges day after day. When One kid wakes all wake.. one kid cries all cry! So one day at a time.. some time we go hour after hour. Please don't think it you.. it reality.. us as mom tend to over think everything. All our kids are smart... just in there own way! I think I recall Jason, bowling and skiing??? My Courtney nope neither.. but we don't have that here. She dancing(ballet and tap) and loves it! My 7yr.. don't talk.. My 3yr is as bright as he is. But my 3yr don't walk. Hope this helps you a little.. we are all here for ONE reason DOWN SYNDROME! It varies from top to bottom. The #'s I sure are many many lurkers.. along with those who have family who just reading to see how there family is.
Give Nicky a hug from a southern GA mom!
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Post by Radonna on Mar 7, 2006 10:52:47 GMT -5
Pauline, Oh sweetie If anyone understands what you are saying it is me!!
I mean it is hard when your child is more involved than others and you wonder what inspiration do I have to offer or storys to share that will uplift someone!!
It can feel like that the value of our boys are missed sometimes but the thing of it is YOU see Nicky's value like I see Kaden's and WE need to be the voice for them.
TO say You don't have to be the most advanced child with Ds to matter. If we show people what living the life most of them are scared of (NOT people on this board but anyone that is newly diagnosised thinks of the worst case senario and is scared of that being their child that is NORMAL ) isn't all that scary or bad and that the love isn't LESS and our lives are happy. We are saying a WHOLE lot. YOUR voice is important!! Never forget that and if you ever need a friend PM me!
Radonna
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Post by donnac on Mar 7, 2006 10:55:47 GMT -5
Pauline --
I think that our children are just on loan to us, and we are chosen to look after them. Obviously, you were chosen and given two fellows that I know you adore.
I don't post much and remain mostly a lurker because right now my free time seem so limited. I sometimes tell myself that I need to jump in and say something (and sometimes do). I love to post when Tyler does something exciting, and do stop and think while I'm posting that maybe I'm having him come across as being more able than he really is. However, we as parents generally talk more about what our children can do rather than what they cannot do. Here on UnoMas, I think that when we talk about what they cannot do, we are a group of friends asking for and offering advise.
I try not to think of any of our kids as "superstars" as Jessie put it. (This is not a negative comment). Everyone is an individual in their own unique way, including our so called typical children. I try to look at Tyler and see him for who he is and what he can do. I try not to dwell on what will never be. I also try to give him all of the support and opportunities that I can so that he will blossom, learn, and accomplish all that he can. It seems that most here on Uno seem to feel the same way. Our kids are who they are, and if they were all the same, there probably wouldn't be any Uno!
Pauline, I have been keeping up on your posts, and have been sending prayers your way when you write about Nicky. I'm sure that a lot of us lurkers keep you in our thoughts. Again, from what I can tell, you are a terrific Mom, who as you said adores your children.
Thanks for a thought provoking post.
Donna
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Post by Tammy on Mar 7, 2006 10:57:26 GMT -5
Pauline.... It is for this reason... that I sometimes feel reluctant to post... Lewis is one of those "High Functioning" (and I HATE that term) kids with DS... We had a meeting at school last week to go over his IEP for the year, and at the end it was pretty much said that ALL of our goals for Lewis were the SAME as tose for the rest of the class...sure Lewis needed a bit of extra supervision and time for some things, but for the most part... he came up the same as "average"... However...in saying that.... There are sooooooo many issues OUSIDE of school that they will probably never even know, but are directly DS related. Since he could walk...I have tried to teach him to stop at the kerb, hold my hand around traffic atc when we go out...after 3 years do you think he has :got: this?? NO... Poo in the toilet... Yea for the most part... he is 100% BLADDER trained, and has been since he was 3... poo on the other hand... is a whole other story...
So Please PLEASE never feel like you have failed....or even let your baies down in any way!!
And without wanting to sound rude or anything... it it the experiences of parents who have more challenging kids and post here, that have helped me be more oreoared and able to cope with the differences... if that makes any sense...
I am sorry if I have said anything to offend...I do tend to suffer a bit of verbal Diahorrea at times... but Honestly Pauline... you have NOT failed... How else does an 18 yr old do so well when he was given a lifespan estimate of 2 yrs at birth!!
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Post by Radonna on Mar 7, 2006 11:01:12 GMT -5
I just reread the part about feeling like a failure
There are days that I wonder If I could have done more but honestly I know that I have loved my child and done everything that anyone suggested to try.
I don't see it as a failure because no matter what I look at Kaden and see a really happy kid.
I have every mothers dream come true right in front of me. Nothing keeps him down for long. He is all smiles and giggles. SO in that respect I feel like I have MORE than suceeded as his Mom.
Radonna
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Post by wrblack on Mar 7, 2006 11:03:21 GMT -5
Well, I was thinking just a while ago, that if kids with Ds were made into a totem pole based on how well they were functioning, "high functioning" on top and going down in rank order, then my Charlie would be one of the cute little guys on the bottom. But, as some may have noticed, that doesn't stop me, not even slow me down much, in sticking my 2 cents in wherever I feel like it. Now, if I thought there was only so much success among people with Ds to be spread around, and that Charlie wasn't getting his fair share because others were getting too much, and that this could be remedied, then I might have a different take on all of this. But fortunately, it doesn't work that way. Somebody else's kid doing well doesn't have anything to do with my kid not doing so well. So, no reason not to join in the celebration of those kids' accomplishments--genuinely and sincerely. It's a somewhat difficult issue. Certainly wouldn't want parents of little kids to lower their sights nor cut back on their hopes and ambitions. On the other hand, I think it's good to remind all interested parties from time to time that not all kids with Ds are going to do all that well. And make the point that those who don't excel are still somebody's kid, a living, breathing, loving and loved child, not canned meat nor a potted plant. I could go on and on about this. But don't think I really need to. Charlie may never talk, much less read and write. But he's a fairly healthy, happy, charming little guy, though he's had more than enough "issues" to deal with. All I've ever wanted was for Charlie to be the best Charlie he could be, not somebody nor anything else. But it is sometimes hard to know just what that is and hard to come up against the fact that the best may sometimes be not all that good. Just another $.02 from me, Bob
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Post by Radonna on Mar 7, 2006 11:06:22 GMT -5
Bob, very well said 2 cents!!
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Post by Jessie on Mar 7, 2006 11:10:23 GMT -5
I agree, very well said Bob!
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Post by WANDA3CEE on Mar 7, 2006 11:44:48 GMT -5
Hi Pauline,
Let me first tell you that you are not a failure. We are here to help our children no matter how long it takes. I have been a member since may 04. My Mia is 2 years old she barley speaks, she is standing and walking holding on to thing. She attends a EI program since September. I felt at one point that I fail her by having her SP, PT, OT, and SE at home I felt so guilty because I did not see allot of progress. I cried on the phone talking to her coordinator. Since starting the program at a center she has improve so much. I am a lurker must of the time not because I do not want to share but because I like to read the post and learn from them. In the book section when they recommend a book I go and get it. In the get together post I always want to go. I wanted to go on the one for labor day last year but nobody book the hotels so of course I did not go. For this one I am waiting for them to book the rooms so I could post and most likely book a room so I could meet some of you. So I mostly enjoy coming to this site to read give my support when I can. Sometimes put in my thought. I love reading all the news about the progress or the disappointment that is shared hear. So please do not stop.
Wanda
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Post by mommygwen on Mar 7, 2006 11:45:29 GMT -5
About G-tubes. When the children are used to them thet are just another way to put food and meds into the tummy. My son with Ds will sometimes help tube feed his brother (who has CP). A friend whose daughter has a G-tube told me that her toddler son did not want bad tasting medicine put into his mouth. He covered his mouth and lifted his shirt, pointing to the spot where a G-tube would go. He wanted a G-tube like his sister so he could have his med by tube instead of by mouth
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