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Post by christie on May 26, 2004 22:14:18 GMT -5
K, no bashing me PLEASE ;D Just sitting here wondering bout this. You know how we all say "having DS just means that one can do the same as everyone else but just takes a bit more time", Hmmmm K, do any of you feel bad or not really like that description sometimes?? I mean for us, YES Chris can do many things as others due and some things others can't Man he skis and Kodi can't Kodi can sing and OMG Chris God Bless him has the flatest notes I have ever heard Soooo really not all kids DS or not can do the same. BUT due to the DS there are just some things he can't and maybe one day won't be able to do Do you KWIM? I don't really put limitations on Chris due to the DS but I do think in all honesty the DS does create limitations. Not sure I am getting across well what I am thinking, BUT if anyone understands what I mean, what do you think?? I just lately am thinking OK sooo what is sooo wrong with admitting there are some limitations, cause I really do believe there is due to DS Does anyone out there feel the same or is it just me??? CC
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Post by Staci on May 26, 2004 23:19:50 GMT -5
CC, I think the same things sometimes about Aidan. I find myself saying to someone "he'll be able to do these things someday, he'll just do it at his own pace" but then, thinking about it, I don't actually know if he'll be able to do some of these things. But, what's wrong with that? I mean, maybe he won't be able to sing, and boy, he'll probably try really hard one of these days, he's such a music fan and you should have seen him tonight watching American Idol , but I can't sing, either! Maybe he won't be a computer whiz like his dad, but I'm sure not the computer whiz! I know what you're getting at...and I don't think it's bad at all. You're right...DS does create limitatins, I think. And there's nothing wrong with us admitting to that. It just means that we're realistic and will accept whatever our kids can...or cannot...do JMHO! Staci
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Post by amyzimoski on May 27, 2004 8:49:28 GMT -5
Putting a description to Down Syndrome is difficult. My daughter Natalie was doing some things that other kids her age weren't doing and wasn't doing things that other kids her age where doing. I just tell my step kids that Natalie is just different just like everyone else is differnt from them and that there is no one else in the world just like them selves. I explain to them that she is to be treated no differently then they would treat any other kid her age.
Amy
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Post by momofrussell on May 27, 2004 14:41:20 GMT -5
You know CC, Annie (mikey's mom) and I have talked about this before a few times. For me, I don't set limitations on Russell but I am very realistic in knowing Russell isn't on the "typical" side of DS (if there is such a thing) and is farther delayed then most. I know he will be able to do some things, but because of the DS AND the vision probs AND lots of the autistic stuff, Russell will never be able to do what some of your kids are already doing... but that is ok. Kevin and I know that he might always need us... But.. I say that knowing Russell is only 6 and may surprise me... but I do know that he might have limitations and accept that. I understand what you are trying to convey and I don't think it's wrong to understand what your child can and can't do. Hope is one thing, reality is another And everyone's reality will be different as our children get older. I figure if Russell does something , it will be awesome and if he doesn't that will be ok too..KWIM? A.
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Post by rickismom on May 27, 2004 17:30:56 GMT -5
I think that we have to aim for much higher than we think is possible- really I try and treat and expect from Ricki a lot--- but at the same time, really realize that NOT everything will be done- and that there will be limitations....and love YOUR CHILD NO MATTER WHERE THEY GET TO ON ANY TYPE OF SCALE....
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Post by laurasnowbird on May 27, 2004 18:55:07 GMT -5
Christie,
Hey girl, I can totally relate to your post. While I strive to keep Ethan's options totally open, the pragmatic part of me realizes that he will probably be able to do less than his brother and sister. I also have real concerns about friendships for him as he gets older. I would love to see him fully included, but I am strongly committed to nurturing friendships with other kids with DS. I don't want to champion inclusion to the exclusion of good friendships and relationships that will last BEYOND high school. In the early years I don't see any problems, but it seems to me that when we get around to the age where kids are dating and driving cars, he is going to feel left out. I may be totally wrong about this, but I'm certain that he is going to need other friends with disabilities who will be similarly constrained. I just feel it in my bones.
SO, where does that leave us? Probably in the same place we've always been, loving our children, wanting the best for them, and doing our level best to keep from being a factor that holds them back. However, I can't control the fact that his disability is almost certain to mean he will be held back from accomplishing some things. And while that is true of my other kids, maybe they won't be capable of doing everything they desire, Ethan is limited in ways that will never touch them. So yes, Christie, I think there's a difference, painful as that is to admit. And I'm sure there are things Ethan will be unable to do. Stinks, doesn't it? No answers here, just lots more questions.
That's what I love about Uno - at least we've got each other! No one else can truly understand the issues we struggle with, but sharing lessens the burden. Hugs to you!
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Post by MB on May 27, 2004 21:32:17 GMT -5
Controversy coming at ya!!!
I will never understand parents who say, "my child will do everything any other child will do, he will just do it later" and then yell and pound their fists when their child is not receiving enough "special" help, services or consideration. If our kids are going to do everything, just later, then why don't we sit around and wait for them to do it? The answer: because they don't!
My kid is different from the typical population. My kid will always be different from the typical population. The secret to his success is to let everyone know that I am comfortable with that fact. And, I really appreciate everyone who gives my son "special" help, services or consideration. My community of family, school and friends celebrate, along with me, his differences. We, as a community, are not pushing him to be like everyone else, we are pushing him to be the best he can be, to be as happy as humanly possible and to give back something to this community that has given so much special help, service and consideration to him.
O.K. Unomassers, fire away!!
MB
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Post by donnita on May 27, 2004 21:47:41 GMT -5
I think the statement "having DS just means that one can do the same as everyone else but just takes a bit more time" is best used when explaining Ds to other children. It is much too simple to really relate what Ds means, but is a good way to describe it to children, who are most concerned with early development (will she walk, will she talk, will she go to school, will she ride a bike, etc). To me, it's a simplified answer for children, because the real answer is just too complex. It's like explaining electricity, tornadoes, or how babies are made. These answers are complex, too. I don't understand how phones work, so how can I explain that to my curious 5 year old? There are things that Cassie will never be able to do, but I just hope it doesn't bother her as much as it might bother me. I can't whistle but Cassie has been able to since she was 2 1/2. So she doesn't talk yet, she whistles for me!
Donnita
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Post by carolyn on May 27, 2004 21:54:12 GMT -5
I too would have to say that I don't actually believe John will do everything his siblings can or will do. I am pretty content with that fact. However, I have quite a bit of confidence in the idea that John will be capable of taking care of himself, able to work at some type of paying job, have friends, and an active social life. I hope he may live away from home with assistance. Which when you think about it, is all we can hope for for any of our children. John will just need lots of help to get there.
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Post by alisonzmom on May 28, 2004 0:16:00 GMT -5
Hmmmm.... CC you brought up an interesting question here! I know in my heart that there are things that Alison may never be able to do BUT I also feel that I would be doing her a grave disservice if I didn't encourage her and help her to have the self-confidence to try to achieve some of those same things. KWIM? For example..... There is an 8 yr old girl w/DS who lives across the street from us. She has spent every dry daylight minute for the past month or two trying to learn how to use a pogo-stick just like her brothers & sister & the rest of the gang. Granted it has taken a lot of persistence and effort ( and stubborness!!! ) and a lot of people never thought (but never told her ) she'd really have the balance, coordination and strength to do it. Alison's PT sat in his car and watched her one day and then told me that he'd be amazed if she was ever able to do more than a couple of bounces. Today she pogo'ed 100 times before loosing her balance! This is also a kid who has been trying every spring & summer for the past 3 or 4 years to learn to ride a 2-wheeled bicycle - this year she told her parents that she was ok with riding a "4-wheeled bike" cuz it has something extra just like her! Her parents & those around her encourage her to try new things but at the same time don't discourage her from trying to achieve things that noone really expects her to do. I guess what I'm trying to say is that I think that our kids do have limitations but we shouldn't under estimate what they are capable of with alot of support and help from those around them. I hope this makes sense to you guys! Barb
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Post by MaggiesMom on May 28, 2004 0:25:31 GMT -5
MB
You know, I had a regional EI coordinator tell me her theory is that kids with DS will do things, just later, and that she didn't think therapy did any good! It just frustrated the child and the family, and took up a lot of time!
I thought it a wild theory at the time, but now understand that there are some things, given time, that will emerge on their own. But, I firmly believe that therapy does help with sensory issues and lots of other things that Maggie may not be able to ldeal with on her own.
I belive Dr. Fereurstien, from Israel, stated that expectations can motivate or limit a person. I think that is true of most people.
Thanks for the thoughts.
Robin M - maggie's mom
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Post by cindylou on May 28, 2004 1:18:27 GMT -5
Just to add-Kaylee is determined to ride a two wheel bike and it's been so much work when she wants to try. We have a new puppy--a baby and now I'm supposed to be following her around the neighborhood holding up a bike with no training wheels!! It's so cute though--all the neighborkids stand around and chant "Kaylee Kaylee Kaylee!" and they're all just expecting any minute that she'll be doing it! I'll be dead soon--or really thin!! she's also working on the pogo stick!
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Post by laurasnowbird on May 28, 2004 8:47:09 GMT -5
I agree Robin, that therapy is beneficial, and I'm certainly not advocating that we don't do therapy with our kids. (But I'm sure that you know that given the conversation that we had ;D). Ethan would not be doing nearly as well as he is now if it weren't for the committed folks at his pediatric rehab. I would be lost without them.
However, there are things that we can work on in therapy until we are blue in the face, and because of limitations imposed by DS, many our kids will probably never accomplish them. I'm not giving up on ANYTHING yet, though. I will continue to presume that he can do anything, which will make the inevitable disappointments more painful. But I will not pretend to myself that he is the same as other kids, only slower. He's not. He truly is different from my other children (and yes, I know, every child is different) but those differences are something we have learned to appreciate. Many "typical" kids end up back at home with their parents when they are grown, but that's not the same thing we are facing. We are facing the possibility that he will always need the help and oversight of someone "typical". Will Ethan beat the odds and be able to live totally on his own, with no assistance, requiring no guardian? Who knows. Heaven knows I will strive to make that possible for him should he have the ability, but I am realistic that there is a strong possibility that he will require help. To pretend otherwise would leave him unprotected, and there is no way I will allow that to happen.
Of course we will continue to do everything possible to maximize his potential, don't think for a minute that we won't. But I'm also aware that he is different, always will be! I think I will handicap him if I DON'T recognize his differences, and help him learn to negotiate the world that the rest of us take for granted.
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Post by MB on May 28, 2004 14:14:48 GMT -5
Dear Robin M,
What is an EI? I assume it stands for Early Interventionist? I can't believe she said that about kids with Ds. Then why have someone employed as an early interventionist if early intervention does not help?
Where is her data? Ahhhhhhh!!!!!!
Blessings,
MB
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Post by shellk on May 28, 2004 17:07:37 GMT -5
CC, I agree with you about this..Kourtney may only be 5 years old, but I have a nephew that is 9 months older than Kourtney is and he is a brilliant child my best friend has a son 2 weeks younger than my nephew and he is the same way..My cousin had a littl girl 2 months after Kourtney was born and she is just amazing. My husband and I have had this discussion before and it took us some time to really understand that there will be things that she may never do and there may be things that she does that will blow our mind. My family has told me that they see her different but not in a bad way. I really think they have to live it to understand it.. Sometimes still I will have a moment where tears fill my eyes when I look at her out there on her swin set just singing away about how she loves Kyle..(That is my nephew who is 9 months older) He truly adores Kourtney and knows why Kourtney is different then him..Back to the subject yes I think about those things and sometimes it is hard to see the light in all of it...And sometimes it is scary to think what will happen as she ages will she get better with behavior and speech ? But, my mom says to me that she wondered the same things about all of her kids and none of us have DS..But like I said before sometimes you have to live it to understand it. Michele
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