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Post by christie on Feb 7, 2005 21:52:21 GMT -5
Do you ever think or worry that you are trying to put a square peg say into a round box sometimes when it comes to your child with DS?? NOW I may not have worded that "politically correct" but do you KWIM?? Hmmmmm maybe its just me and maybe I have just run out of steam BUT to be honest I feel this way many times EVERYONE is always telling me, Chris is just like any other child just delayed some. Hmmmmm I mean he has a disability thats the facts, what is sooooo wrong in admitting that?? Just wondering if anyone out there has felt that way too?? Or if I am the only one?? CC ~
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Post by paulinemjc on Feb 8, 2005 3:51:33 GMT -5
Hi Christie. No Christie, you are not the only one who thinks that way I agree with you completely although it might make us unpopular with some people. I think its about time some parents face up to the fact that their child has a disability, its not going to go away and what is wrong with admitting it. They are still our children and we love them disability and all and are proud of their achievements, big or in Nicky's case small. I have never avoided telling anyone that Nicky has DS and I wouldn't change his DS as it makes him who he is but of course I would take away his life limiting medical condition. I think poltical correctness has gone way overboard now e.g. I am not weight challenged - I am fat (well overweight!). Just my opinion of course. Pauline UK
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Post by Jessie on Feb 8, 2005 8:22:27 GMT -5
Yes and no. I have days when I feel like Jason is just never going to "get" anything that is said and that we have to repeat the same thing over and over and over and over again. Then, there are days when he amazes me and he seems like the average kid.
Me and DH have had discussions about this - and wondered if Jason has more wrong with him than DS? I mean doesn't DS mean that they are just delayed and slower at learning things? If so, then Jason must have the most severe form! That really wasn't meant to be funny, but maybe it does go to CC's point that we even feel like because he isn't as advanced as some other DS kids we feel like there must be something more wrong with him. But, geez, I guess the DS is ENOUGH isn't it?!!
Thanks for posting that - that helped me have a little unexpected revelation this morning and put things into perspective for me!!
Jessie
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Post by Stan and Harry's Dad on Feb 8, 2005 8:25:05 GMT -5
2 things here. completely agree. Why can't we feel s**t off that our kids have a disability. every time i take stan out i have to deal with the enquiring looks and stares.....it gets on your nerves. But why can't we also hope and expect them to do great things. my heart misses a beat when i think of my beautiful boys and that is the main thing. Re political correctness: Another dad told me that he had a greek bloke in his house who said: "oh, he's a mongoloid". obviously ok in greece. pc is in the mind of the beholder. the problem is that our kids can't necessarily express a view. people in wheelchairs may not want to be called "wheelchair bound" or "users" but they can tell you what they want to be called. We have to make pc language decisions on behalf of our kids. But i'd say that's the least of our problems!
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Post by SID on Feb 8, 2005 8:45:39 GMT -5
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Post by YoshsMom on Feb 8, 2005 12:14:40 GMT -5
I think Yosh's ds changes more about him than just his learning skills. Its part of who he is. And no matter what level his skills reach, it will always affect the way the world sees him and the way he sees the world. There are days I marvel at the things he is doing and others when I worry that he isn't doing enough. Today someone asked how old he is and when I said 2 1/2, she looked at me with such pity I wanted to smack her. And I've completely given up on DH's family who, with the exception of my MIL, act like he doesn't exist.
When I taught in NYC, they used to call all the special needs kids a "preschool child with a disability" so that no one would be insulted by a label. It would have been a lot easier to teach them if I'd known what the problem was at the start instead of having to figure it out on my own. And DH has students in high school who can't read because of social promotions. Who cares if the kid can't read as long as his feelings aren't hurt. All that pc stuff is ridiculous and does more harm than good.
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Post by Kristen on Feb 8, 2005 12:57:56 GMT -5
I personally get tired of it. Pick yourselves up, yes, I sid that. Carter has a disability woo-hoo. Most days I feel like this and it could phase me as much as knowing the news will be back on at 6, KWIM? Other days, especially when he is on the brink of a next milestone (walking, now) and he's trying then he isn't making it then it's like he doesn't feel like trying today but maybe tomorrow - then it gets stressful. I think the knowledge that he is not like every other kid and we don't know what to do for him makes it a heightened stress. There seems to be more of a sense of urgency sometimes. Does that make sense? I think of him as any other kid in the way that I love him like I would love him if he did not have DS. I love him and Syddie the same. I don't think of him as any other kid in that well, he is obviously not. I think I don't make a point of that much because I would rather people act like it is no big deal (which it is and isn't) than be reminded that he isn't. Better to steer towards acceptance, KWIM? everyone doesn't need to know some days are harder than others.
As for the general public - I could give a rat's hiney. I get that same look or I get asked if the kids are twins a lot and I say no and they look so shocked. Or I get teh overly nice attentive person in the store and I think here we go again. In sum, I have my DS awareness ribbon proudly displayed on my car. If people have questions, I answer them; when they have sincere supportive words, I genuinely thank them. I am 100% NOT ashamed that Carter is diferent and I am 100% proud of him. Saying he has DS does not diminish NOR uplift his accomplishments "in spite of". Don't give him more credit than he deserves, but don't stereotype him, either.
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Post by cindylou on Feb 8, 2005 13:20:07 GMT -5
Hey there Christie-I haven't posted in forever. Since having Sam (my 1.5 year old) my computer time is VERY limited (mostly to paying bills!) I have the same sense of frustration in regards to Kaylee sometimes (11/ds). Am I working really hard to make her something she isn't? Is what I'm doing because I want to somehow change HER? I think I have to constantly evaluate the why behind things we do. Is this for me? or for her? Do we have homework at night so she can "catch up" to her 5th grade classmates--or is it to teach her responsibility and pride in completing it? I have let go of some things-which I felt I was pushing to try to change her..and continued with other things (such as doing both phonics and sight words as goals on her IEP). She is WAY behind some kids who have ds (like sweet Emily, Susans daughter) and ahead of other kids. I cannot compare, because in doing so I become frustrated with where Kaylee is--and if I find myself wanting to brag-then I think of the person further down the line whose child isn't doing what Kaylee can-and certainly don't want them to feel frustrated. (I do love hearing what other kids can do-it gives me hopes and things to try with Kaylee). I am happy that she is finally reading at a 1st grade level-but she's in 5th GRADE! I had hoped she would be farther along. In regards to the term mentally retarded--I have resisted it and I know that it is silly. It just has such a negative conotation to it. Mostly because people use the word "retard" as an insult to others or themselves when they do something stupid. I wouldn't classify Kaylee (or anyone) as stupid because it is so negative and rude. I know that is not the definition at all--but that is how society sees it. I also have never agreed to IQ testing for Kaylee--but not because I'm in denial. If she was IQ tested she may do great--but if she did poorly--I tell you the first thing teachers do is open her file and look for a #. If there were a # in her file, they would make a judgement (I can't teach her anything--she wouldn't get it) whereas currently they just attempt everything with her to see if she can handle it. Anyways-I'm right there with you guys. Just continuing to evaluate and make sure the things I invest my time in are for the right reasons-not so I can say all that she is able to do. The thing I'm most happy about is the amount of typical peers she has as friends--and that certainly has nothing to do with her academic ability. ;D I am just glad she has learned how (for the most part) to behave appropriatley in social settings-how to make friends-and has been in a neighborhood that so openly accepts her-both boys and girls and adults . That's a lot to say for these kids around her because her speech is SOO hard to understand and her behavior can at times be embarrassing (like her choosing to sit with all the 5th grade boys at lunch because she likes them! thank God they're nice to her!!) and by the way--I've had several people refer to Kaylee as being Mongoloid--its like a glass of cold water in your face--but for the most part I think folks are just stumbling along trying to say the right thing--and had I not had Kaylee I would be nervous and (possibly) say stupid things too..
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Post by rickismom on Feb 8, 2005 17:38:01 GMT -5
Well, CC, I agree with most of the above. While I use on a daily basis the term DS, when I need to (to be clear) I will use the MR terms. I am fircely proud of Ricki's accomplishments, yet at times floored at the idiotic and stubborn things she can suddenly do with absolutely no warning. I am sometimes almost in tears because she sometimes works against her own good, and she doesn't "hop" my explanation of WHY she is losing out as a result of her actions (which are often more due to bad behavior habits, rather than DS., but she picked this up at school where she was not handled right.) Slowely I am realizing and INTERNALIZING that some things may NEVER be 100% But those times are the minor times. Most of the time I am pretty upbeat. In public I try to be upbeat at all times, as I 1- want people to know its not all that bad 2- No one will give me support anyway if I complain, they will whitewash the problem. What do THEY care if Ricki has to go to special ed next year (if her behavior in school doesn't improve)? They didn't sweat blood to get her to where she is today, and they don't understand what real inclusion is and what COULD be done with a girl like Ricki.
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Post by rickismom on Feb 8, 2005 17:38:44 GMT -5
Well, CC, I agree with most of the above. While I use on a daily basis the term DS, when I need to (to be clear) I will use the MR terms. I am fircely proud of Ricki's accomplishments, yet at times floored at the idiotic and stubborn things she can suddenly do with absolutely no warning. I am sometimes almost in tears because she sometimes works against her own good, and she doesn't "hop" my explanation of WHY she is losing out as a result of her actions (which are often more due to bad behavior habits, rather than DS., but she picked this up at school where she was not handled right.) Slowely I am realizing and INTERNALIZING that some things may NEVER be 100% But those times are the minor times. Most of the time I am pretty upbeat. In public I try to be upbeat at all times, as I 1- want people to know its not all that bad 2- No one will give me support anyway if I complain, they will whitewash the problem. What do THEY care if Ricki has to go to special ed next year (if her behavior in school doesn't improve)? They didn't sweat blood to get her to where she is today, and they don't understand what real inclusion is and what COULD be done with a girl like Ricki.
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Post by Chris on Feb 8, 2005 22:19:05 GMT -5
Sarah is only three so am not as experienced as many of you are in dealing with the whole Ds issue. I don't see Sarah the same as a typical child but just slower. Many people ask me what her mental age is but I really don't know how you could assess a mental age. We did have her IQ tested and I was immediately sorry. Yes, I know my child doesn't learn as quickly as some other kids with Ds but she is smart in so many ways! I do believe that her preschool teacher looked at her IQ score and doesn't challenge Sarah at all. I think this is true because she isn't able to see everything that Sarah is doing. She also described my daughter as being very cooperative. Everyone who has worked with Sarah has said she is the most stubborn, uncooperative child they have ever worked with! I had dreams of Sarah being fully included in school and in the community but I wonder if that is even feasible for a child with a moderate cognitive impairment. She is way behind all the other students in her special ed class, I can't imagine her with typical children. When talking to other people in the same boat, I don't really worry about being PC. Most of us can relate to your frustratoins and joys. I just don't like to refer to kids with Ds as being Ds. For example, Sarah has Ds not Sarah is Ds. She is Sarah and Ds is one of her characteristics like having brown hair and brown eyes or having a heart defect. I guess I have rambled enough now. Chris
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Post by Renee' on Feb 8, 2005 22:29:37 GMT -5
I know what you mean.
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Post by christie on Feb 9, 2005 1:28:06 GMT -5
Geez ALL THANKS for sharing your feelings and thoughts I ALWAYS appreciate hearing what you ALL have to say And I have to add its NICE to know I am not alone on this feeling. OMG CINDY CINDY CINDY, is that you girl ?? How the HECK are you?? You have been missed TONS girl and you know I hope one day you can get to posting more girl cause I know for a fact that many of the new people here could beneift tons from your thoughts I say we need to chat with all the oldies one day and just LOLOL till we split a gut Anyone else agree, raise their hand CC ~
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Post by SID on Feb 9, 2005 8:27:50 GMT -5
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Post by pinky on Feb 12, 2005 16:49:06 GMT -5
Hi iam adopting child with downs sydrome my new child shouls hopefully be here for christmas.I have been on every website i acn find to make sure that i have as much knowledge as possible.what i have found hard is not offending.My view is that our new addition will be somewhat behind,and he/she will be behind my other children.I have heard people saying that they want there childs disability to be known as trisomy 21 thats fine but the average joe doesnt know what that is.my new child is going to have downs sydrome and iam not ashamed,and iam not going to make my child out to be something its not.I do get the feeling that some try to hide their chids differance rather than be proud of the child for their strenths and weaknesses.right i know somebody is going to tell me off again.Iam sorry but i guess i call a spade a spade.It will have no bearing on the love i give our new child.this is proberbly been one of the most honest and open discussions i have read and believe me ive read alot.
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