Thursday, August 21, 2008

About Down syndrome

A very insightful friend sent this to me:

This is so dead-on for me. It's an issue I've really been wrestling with lately . . . how much to tell people. I am finding that I tend to blurt out all the details whenever anyone asks me about our new baby, and then afterwards I kick myself and wonder why I feel so compelled to unload on these innocent people who, when they ask "How's the new baby?" most likely really just want to hear that everything is great. I have found myself explaining the whole ordeal - Finn's surgery at a day old, his 2-week stay in the NICU, his diagnosis of DS, his weight and feeding issues - to everyone from close friends (of course) to neighbors I barely know, parents of my kids' friends who I'm not even remotely close to, even the cashier at the grocery store I frequent. I think I am pathologically honest or something. And it's not as if telling people makes me feel any better . . . it's just this strange compulsion I seem to have and hardly understand.


And for anyone who would like to know a little bit more about Down syndrome, this is a very good article:


Carla said...

That first link was priceless. Thanks for sharing it; I understand you a bit more now. The honesty of what she blurted out to her friend was met by an equally honest response. These two women were great gifts to one another. I also appreciated the link explaining DS a bit more.

Laurie said...

It's funny...I read that exact same piece today and as you know, I could really relate to what she had to say. It's so tricky, isnt it? :Sigh:
Great second link as well. TFS! : )

T-rex said...

That was just what I needed to read today, as well, and I must say I respect and appreciate your honesty over your feelings with Finn and life lately more than you know.

The article on Downs was great, too... it really gave good perspective on Downs as being more than 'just the diagnosis' and that is SO important - to see the person behind the condition for who THEY are, not who we think or want them to be.

Jodi said...

One sentence in that second link really struck me - "These tests do not measure many important areas of intelligence, and you will often be surprised by the memory, insight, creativity, and cleverness of your child."

Keep that in mind when you're wondering about valuing or devaluing the accomplishments of all of your children (from a couple blogs back). They will not all achieve the same goals in exactly the same way or even in the same areas. Finn will forge his own path of learning and discovery and he may have insight that blows your socks off.

Nikki~Down syndrome Storyteller said...

Are you trying to defend Finn against people's thoughts? I know I was. I used to do the same thing as you-tell anyone and everyone. I've now relaxed a little, come to terms with people staring at us. I treat my daughter just like any other 2 year old, and I expect the same out of her as well. People see this and follow my example. I don't say that I have 3 kids and one has DS anymore. I simply say I have 3 kids. I want her to be treated like anyone else, so that's what I project to others. It seems to work. --Nikki

rickismom said...

Well, 13 years ago I was much the same. Now that Ricki is almost 14, I just wish that people could see past the label and see HER.
Sometimes,especially at first, so many people are trying to tell you that everything is OK (to make the problems you have a non-problem) that you tell person after person, waiting for someone who will VALIDATE that it is sometimes hard, without making it into a "pity party". Sometimes you just need the "Gee, that's tough. How are you hadling it?".
For an HONEST yet upbeat look at life with a teen with DS, you are welcome to visit my blog.