DownSyn Forum

vonda · Posted: March 22 2002, 10:54 AM Post subject:

Just wondering if anyone saw the movie "I am Sam"? My husband and I saw it last weekend and it was SO wonderful, even though I spent 90% of the movie crying/laughing. There is a guy in the movie with Down syndrome and he is just precious, has the BEST lines too. The movie made me wish all these characters were my neighbors! It also made me realize that most of the people there in that movie theater will never get the chance to experience what I do with my son Noah (Ds). And I suddenly felt so sad for them. After the movie we went home and although Noah was sound asleep in his crib, I felt I HAD to scoop him up and love on him for awhile. What a joy!!! Vonda

we6rffh · Posted: March 23 2002, 11:08 AM Post subject:

Vonda,
Haven't seen the movie yet, but did you see the segment that Oprah did on the movie. She had an interview with Sean Penn. She kept saying how surprised she was at how good the movie was and kept asking Sean Penn how it was to work with such talented "mentally challenged" actors ( as though they need to be in a separate category from other talented actors). I bet she used the term "mentally challenged" 50 times in the short segment. She said she would never look at "mentally challenged" people the same way again. And that she was surprised how good the "mentally challenged" actors were.
I finally got so annoyed at her emphasis on "mentally challenged", that I sat down and wrote her an email. Probably she will never see it, but it felt good to get it off my chest.

_________________
Charlene, Mom to:
Ashley,26
Brandon,25
Taylor,21
Courtney,13
and Cameron, 12, DS, AVSD repaired, VSD closed, and leaking mitral valve.

Abby's Angels · Posted: March 23 2002, 12:38 PM Post subject:

Hi - I am just curious as to what term you would rather have Oprah use? I hear people refer to my daughter as 'Special' and sometimes that even gets on my nerves! Yes, she is special, but aren't all kids? My daughter is only 81/2 months old and I am still not very comfortable with all the terminology. Prior to her birth I had NO experience with DS or any other conditions for that matter.

As for I am Sam - still haven't seen it - don't get to the movies much these days...but I am anxious to see how it does at the awards tomorrow night. I think it's up for a few.

_________________
Katy & Solomon Krevsky
Harrisburg, PA

we6rffh · Posted: March 23 2002, 2:52 PM Post subject:

Someone on this site recently referred to our kids as having "exceptionalities". Although I had never heard that before, I really liked it.
I just really do not like the word "mental" used in any form when speaking of our kids.
I really feel the need to watch myself when using the word "special". I don't like to use it in front of my other children, for fear that they may feel "unspecial".
I guess I don't have a perfect solution, I wish that just "Cameron" would suffice.

_________________
Charlene, Mom to:
Ashley,26
Brandon,25
Taylor,21
Courtney,13
and Cameron, 12, DS, AVSD repaired, VSD closed, and leaking mitral valve.

Abby's Angels · Posted: March 24 2002, 9:02 AM Post subject:

Yes, Exceptionalities does sound good - and I agree on what you said about using the word special. Now, I wonder how I can tell my friends to stop calling Abby special - think there is a good way to do it - or do I just need to understand where they are coming from?

Maybe I should post this separately - I have trouble figuring out the right way - the right words to use when I tell people about Abby. I get the "she's so small" comment a lot - deep down I am thinking that they can see something is different with her, but they don't want to ask in such plain words. It depends on who I am meeting - sometimes I just say - yea, she's a peanut...but sometimes I tell people she has DS straight out. Do you think they are digging for more info when they ask - or do you think they are just truly commenting on her petiteness? It has been hard for me to know how to communicate with strangers/acquaintences about my daughter. Any ideas or experience on this??

_________________
Katy & Solomon Krevsky
Harrisburg, PA

vonda · Posted: March 24 2002, 12:50 PM Post subject:

Usually when someone says something like that about Noah, like him being small, I just go with it and simply say, Yeah that's one of the characteristics of having Down syndrome, that and the fact that he has the most adorable smile you'll ever see and a personality to match, and then they see that I'm aware that THEY are aware something is different about him and they usually have nothing more to say. Either that or they say something like "OH does he, well I would have never guessed". I just LOVE that one, and I'm sure you've heard that before too. I think that people just don't know WHAT to say, and I'm sure if I were in that position I wouldn't either, and probably did say some stupid things before Noah came along. I just try not to make a big deal out of the Down syndrome thing when people ask. I think that a lot of people are remembering how Down syndrome USED to be, where NO ONE wanted to talk about it, it was kept hidden and a secret, so they don't feel they have the right to bring it up or comment, but I really wish they would, cause Down syndrome is NOT a bad thing, and I just wish everyone would realize and understand that. It's OKAY to talk about it. I really don't refer to Noah as "special", sometimes I call him my angel, but usually I just refer to him as my son, who happens to have Down syndrome. When people ask how he's doing, I say great, but then say he either is a lil behind in his speech or communication, but always add that he WILL be catching up, cause he will. I think everyone has a "special need", whether they have Down syndrome or not, and I think that people should see our children as we do, like any other child, who is learning and doing the best they can. Vonda

Solveig · Posted: March 26 2002, 1:54 AM Post subject:

It's been a while since I last posted, but Abby's Angels story on how people say her child is so small, brought back a memory I thought I might share with you. Benedikte was 8 months old when we were at a birthday party with a lot of other children and their mothers. One of the mothers, who had just given birth to her third child, was plain out boasting on how huge her children all were at birth. Then she looked at Bene, saying "she is so small!!!! She can't weigh more than my youngest, and he's only 2 months old!" That's when I thought enough was enough and told her straight out that flowers grow slower than weeds. I know very well that it was out of line, but when I look back at that episode, I always have to giggle. Maybe it was just her turn to realize that how small og big children are, is just a number on a scale. They're not sold by the pound anyway, so why bother?? Smile

I've stopped being so afraid of what anyone might think, as I used to be. When I think someone is out of line, I give them a little piece of my mind. I'm not trying to offend anyone, rather to educate them and shed a little light on what's important in life. And IQ or weight, or terminology for that matter, is NOT important to me, unless it's used to hurt others. As far as Oprah, she's my hero!!! Smile

Love, Solveig

Abby's Angels · Posted: March 26 2002, 9:02 AM Post subject:

Thank you so much for sharing your stories - it has put a smile on my face today.

_________________
Katy & Solomon Krevsky
Harrisburg, PA

vonda · Posted: March 26 2002, 4:09 PM Post subject:

Solveig, that WAS a great story and I can't think of a better comeback than that. I know how some people just know how to say the wrong thing. It reminded me of a time when Noah was first born, I started getting sick and tired of telling the SAME Ds story over and over and I remember one time this man came up to me and my children and commented on Noah's eyes, being SO almond shaped, so I simply looked at him and said "YES, his father is Chinese", he took one look at my other children who, of course, do NOT have almond eyes, and just smiled and walked away. End of story, ha ha. Vonda

susanmac · Posted: March 27 2002, 8:09 AM Post subject:

Thanks for a good laugh this morning. Those are some great stories!

Susan

KnCmamma · Posted: March 27 2002, 9:33 AM Post subject:

First about the movie. I loved it...it was good, very emotional and sad and happy.

Now as for people approaching and asking about Christian having DS, I haven't really had that yet(mind you Christian is only 2yrs old), but I have had incedents where I have seen some children that I am sure have DS(but not fully sure) and I have been afraid to approach the mother incase I was totally wrong or I also didn't want to upset the mother. How do you approach someone and find out forsure if their child does have DS if you are unsure so that you can talk with them? My meaning is just to only have a friendly conversation with them.

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