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Post by christie on Jul 18, 2004 22:11:50 GMT -5
Hmmmm, just sitting here wondering, again tooo much time on my hands, LOLOL Was thinking Hmmmm our kids that have DS, K, why does it not affect them all the same KWIM I mean YES ALL kids are different and individual but I am not talking bout that I am talking bout the parts that are affected by the DS You know the PT, OT and ST and such, why are some areas sooo hard for one and not others?? Not sure there is a real answer to that ? BUT sitting her wondering none the less CC
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Post by meghans_mom on Jul 19, 2004 6:55:57 GMT -5
CC - I don't even think the dr's have been able to answer that one for sure - but the most plausible explaination I've read is that (and I'm sure I won't explain this right) - one the extra chromosome there are things -- or maybe it's because of the 3rd copy that are affected....say the facial features that *most* kids have that are in common -- or the low tone... and there is also an area for the heart, GI, other things...each is an band or area on the chromosome and it depends on something with-in that chromosome -- those bands and how they are affected, that causes these things. Just like each band has genes for other genetic things - like me having the same shaped eyes as my dad...and depending on how those bands lined up or were arranged, then it equaled me having this shape instead of my mom's. I can't remember where I read that....maybe the Parents/babies w/ DS book? When I read it, it made sense to me...but I'm sure I've jumbled it all up here!
hugs, laurie
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Post by Danielle on Jul 19, 2004 9:16:04 GMT -5
I wonder this same thing sometimes....and something else too.....Zane sees the same exactly therapists as a few other kids in our area with DS (and other disabilities, too) and I find it so interesting that even with all the same therapies, same number of sessions, and same therapists, the outcomes for our children are still so different sometimes. Even when the problems appear to be the same (low tone, poor jaw control, whatever the diagnosis), there is no one-size-fits-all solution.
I guess every child is just so different from another.....and so much of who we are has to do with what we're born with genetically. From what I've seen, the therapies Zane gets only help him enhance whatever he's got, rather than replace what he doesn't....you know what I mean?
Anyway, just rambling....interesting topic, though......
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Post by momofrussell on Jul 19, 2004 10:45:40 GMT -5
You know, when Radonna and I would talk about Kaden and the Autism, WELL before Russell was DX'd I always had a problem with the whole "other labels" thing on children w/DS, i.e. Autism, ADD, ect... because I thought isn't it JUST the DS.. .KWIM? Like what you are saying and thinking about... some kids are affected differently than others - some kids have different weaknesses and strenghts. So I always thought the other stuff put upon our children was JUST the DS and who our children were... I still believe that are children do have their own stregths, weaknesses and the just-who-they-are with DS, just like any person in the world with or without any disability. So, like life, nothing is going to affect two people the same... life would be VERY boring... LOL BUT, I also now understand what those other labels are there for... and it isn't always the DS... I think I went WAY to much into your question LOL, but it just got me thinking about stuff Radonna and I use to talk about Gosh I miss her terribly! She was my salvation, motivation and so much more when I needed someone I could talk to and relate to! A.
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Post by christie on Jul 19, 2004 21:03:39 GMT -5
LAURIE, THANKS girl, hey your answer made lots of sense to me ;D
DANI, girl how the heck are YOU?? You know girl that is how I have always been told from the get go with Chris, the therapies will only make what he does and can do better but will not make what he can't happen. Well you worded it much better then me, but YES I do believe that to be true. Funny when Chris was first born, I thought, K we will get him any and all the therapy he needs and he will do great ;D But the reality was he did GREAT in the areas he already had less problems with. A ~ Yes I do agree that some of our kids with DS also have other DX and its important to know that if its the case. BUT I was thinking Hmmm yes Chris would be Chris DS or not but why can he do sooo well in one area and just not another area even with tons of therapy and lots of carry over at home
LOL my mind just works overtime somedays
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Post by momofrussell on Jul 20, 2004 11:45:03 GMT -5
No CC, you just post how we all feel... We live VICARIOUSLY through your moments of neuroticism LOL Seriously though... You made me think of something else the Ped Nuero told us when we took Russell there when he got his Autism DX. I THOUGHT and THOUGHT that Russell was the way he was because he ONLY had PT for his first 3 yrs of life and didn't have a global program that was continually offered to us (I loved our PT too much to part with her). I also thought since we didn't do a global program and Russell had NO ST or OT until after 3 yrs of age, that THAT was the reason why Russell was who he was and why he didn't talk. I blamed myself... But the doc said, Russell is WHO he is regardless... and ALL the therapies in the world wouldn't have changed him a bit! Man, I did NOT know that and I really needed to hear that. Because I see parents working SOOO hard with their children and their children JAM and then, I am on the lazy end of the spectrum, and look at Russell, KWIM? So, I do have those thoughts and questions too... and yes, like I stated, it's just who our kid are! Luv ya! A.
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Post by Connie on Jul 20, 2004 12:04:36 GMT -5
A. I have to second your doctor here. Now don't get me wrong I beleive therapy is great and does help our children...not so much with acheiving goals but helping them do tasks properly...if that makes any sense. I beleive our kids will do everything they are meant to do in their own time with or with out therapy. I have had to learn to accept this and realize that Collins like any other kid and all these therapies can over load his sytem. I have noticed a big change (for the better -- in our case) in Collin since I have given him a break from school this summer and not had every day scheduled with some kind of schooling or therapy. So don't kick your self girl... Hugs, Connie
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