For Debbie...

[Jodi]

In the IQ thread you said, "When someone meets me they see what they think of potential, and then I don't meet that potential they are sadly disappointed sometimes."

We are such a testing society! As a parent, I feel the pressure of disappointing people but in a different way than what you go through. I think it is good to try and learn new things. It seems though that the learning window is so short.

The one thing that bugs me more than anything is how many people just don't teach much anymore. You get shown how to do things a couple of times, and then BOOM - time for a test. If you fail - good grief - you're a failure!

It's too bad we can't just "be".

Thanks for your thoughtful post!

Jodi

[Jackie]

Well ...some good news! (not to steal the post to Debbie) In reference to not meeting expectations...Emily last night really held her own. We were part of a big fundraiser at our art center. They asked the gallery owners to please have the galleries open from 6-7:30 and wine and cheese was served in the hallways. Emily and Ed and I dressed up as we had tickets to the function as well and did the gallery thing first.

Lots of people came in and I let Emily do a lot of the greeting. At one point a gentleman was talking to her about his wife and her art and I could tell from their conversation he had no idea she was disabled. I sort of held my breath waiting for one or the other to stumble...but you know...the conversation ended on its own when another person came in and asked Emily a question. She looked pretty...had good hair and nice makeup...and her speech is good ...so like Debbie she often comes across as not being disabled at first. I admit I often step in when an incident like last night happens to save everyone embarassment when the light dawns...but...after reading Debbie's post and knowing her...and watching HER with people...I think Emily needs to be allowed to handle situations like this on her own the same was Debbie does.

You are right...society just needs to get a grip on itself. And I need to get one on myself as well and let Emily be herself. She was absolutely charming last night and talked to many many people...some who knew her and many who did not. I just have to pinch myself sometimes and think of the glass as full...and Emily doing all she does...DESPITE the fact she has a disability and hope others realize that as well.

I know what DEBBIE is talking about but I am telling you ...I can't imagine Debbie not being able keep up with anyone she is visiting with. We spent almost a week in DC together a few years ago...and when I came home ...my brain hurt...from trying to keep up with this woman's intellectual capacity...and her non stop quest for knowledge. We went to Borders Bookstore so she could buy a copy of Ayn Rand's Atlas Shrugged...I have never made it through that. ;D

DEBBIE...I am sure it is hard at times for you ...and you don't want to interject...about having DS ...because that is not what defines you and I doubt that you do unless it is a situation possibly with others who deal with disabilities. But remember that most of us have some roadblocks in our social interactions as well.

Jackie

[Jodi]

Thanks, Jackie, for adding to the post. I think you touched on some of what I was trying to say... the part about just "being" you, me, Emily, Ryan, Debbie, etc. I don't think we will ever be able to completely refrain from jumping in - but wouldn't it be neat if we didn't even feel the need? That's assuming too much I know, but still (sigh) it would be so neat if some people would get over the Ds thing.

When I was talking about testing, I really felt that our kids, and you Debbie, are truly tested too much. Too much comparison going on and I think there can be tremendous pressure from that. Is that the only way we can make sense of people who may do things on a different level?

Oh boy... I'm rambling... LOL

Jodi

[steffipoo]

And I need to get one on myself as well and let Emily be herself. She was absolutely charming last night and talked to many many people...some who knew her and many who did not.

k Jackie I can so relate. Sometimes I don't back off in fear of what Liv may or may not say mostly mainly really what she might say. LOL.... Ya know kinda worried she may barge in ppls homes even if we know em or stopping her short because she is getting off track and well I have started this year really putting a lid on myself and letting her deal with what ppl have to say to her. She hears no from me waaaaaaaay too much. Not now though. So I was talking to a neighbor friend the other day and Liv was listening in and we were talking about me really backing off and letting her be in all aspects of her life letting her be Olivia without me barging in and trying to have her be like what I want her to be. Does that make any sense whatsoever? Well anyhow we were talking and I was talking to the neighbor bout how I am letting go and letting her fly off and loosening the reins a bit more a lot more and she has completely blown me away wiuth her skills and givin us a pat on the back for helpin her get em so she could use em. Thats why we have been doing what we have been doing all these years trying to get her indep-endence. Well I am saying this and Liv interjects and says after the neighbor agrees with my thoughts on her newfound freedom... LOLOL.... " FINALLY SOMEONE WHO UNDERSTANDS " then she looked up at us and smiled so big it was hysterical. I am finally letting her stay after school, letting others tell her NO or yes before I can answer for them. Sometimes I think she is more of a bother to some than she is. Well she is to some but to many mnay they just enjoy her for her and I gotta back off and let her bask in it and let them tell her no not right now or sure we can. ya know? its tough I am a work in progress LOL (((HUGS))) Steff

[steffipoo]

i'm so sick of testing. Liv isn't tested that much just her yearly school testing that all the kids do. Otherwise she takes a weekly spelling and math test which is more exposure to the words that week and exposure to new math work or perhaps old math work she is still working on. Just each week we will try a new way to do it in the math dept. EXPOSing and exposure is written into all of Livs ieps so that she doesn't have to test to nclb standards. Long story but the testing in my child is limited to the school year mandatory testing

[Jackie]

Emily was only tested every 3 years as far as standardized testing. I can't even remember her scores nor do I really remember what 'norms' are for typical people...LOL. It really made no difference to me because she has always functioned at a level that we were comfortable with and that's what really should have been tested...not her "potential". And when you get right down to it...why did anything about her really need to be tested as long as she was doing what all she did and still does. Such silliness ;D

But then I am getting old and wearing purple and can say all this stuff!

Jackie

[Debbie]

I guess when I meant as potential I was referring to my life in general as an adult. They see me as anyone else. What they don't know is my limitations. The problems I have sometimes. My life experiences are somewhat limited due to not being on my own and not being able to hold down a job. Almost everyone I know who has Down syndrome or a say a parent of an adult who has Down syndrome have a job. They live with a roommate or live on their own. I am not. I have been told I am naive when it comes to life. I have never had to work really hard to get money. It makes me feel embaraseed at my age. I am forty seven. I am not married, don't want to be and can't make a living. It is different when you are at my age.

I guess there are different kind of testings. I never thought about it like that. Society does test us at times. If you don't meet a certain requirement you are considered "different."

[char]

Well, Debbie, in my book you are a wonderful woman, and I'm thrilled to have met you here on this board. My one hope is to someday meet you face to face :-)

Char