october 11th , 2008

 

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questions you asked me from my post here:
http://it.livejournal.com/81929.html

What words is she saying-or attempting to say?

she isn't trying to say any words right now that i can tell. a lot of children with T21 don't say their 1st words until they are 5 years old.

What's her current favorite food?

she seems to like everything! she isn't a picky eater, thankfully :)

What are your two biggest concerns in regards to lili growing up?

i hope she will not have to deal with prejudice.

How do children with down syndrome generally cope/react to a new sibling? (If you've ever heard anything).

i don't think they react any differently than typical children.

What is the cause of T21? no one really knows.
Like, why is there more likely to be an extra chromosome when women get pregnant over a certain age? This may sound stupid, but is it because their eggs are old or maybe because of a lack of a certain hormone as they approach menopause?
they guess that when the eggs age they are more prone to things like T21. but more children with T21 are born to women that are younger than are older. it can happen at any age.
Do the scientists even know? not really.

from a cosmic standpoint i think it is just that the universe likes to play and likes variation :)

Who will care for her when you & M aren't able to?

well, since we plan on living to a ripe old age, hopefully we will care for her. if we die, then we come from a pretty extensive family.

Will you do screening to see if the child you are carrying is also T21?
no. i didn't do screening for lili, i don't see why that would change now. plus testing comes with a risk of miscarriage.

Are there any programs in Canada (and the US) geared toward the advancement and early intervention for her available?

yes, there are many. but really, she just goes at her own pace regardless and that is just fine :)

What do you consider "mainstreaming"?

including people with disabilities into everything. not segregating them into separate "disability only" activities. i don't really like the word "mainstreaming".
plus the "mainstream" is not the be all and end all of existence :) it is not the golden egg we are all after.

What do you think it would feel like to have T21?

i have no idea but i wonder about this a lot! from what i have read that that people with T21 have written about it, it seems they don't feel anything "different". i guess i imagine it might feel like being a child and seeing things in a childlike way all of the time.

how do you think your life would be different if you had t21?

well, it would be totally different. it would be so different thre is no way to summarize it here! i would probbaly be spared a lot of existential angst :)

Also, I have read you plan to home school Lili. Do you plan to home school both children? i had planned to homeschool my children even before i knew lili had T21. but if by some freak accident i actually find a school i trust, i will consider it. If so, assuming your second child does not have t21 how do you think your curriculum will differ for the children? i have no idea. time will tell! it's way to early to speculate.

What would the world be like if however many millions of t21 foetuses that were aborted since they started detecting that in utero, had been carried full term, birthed, raised, and were part of our human society?

i think one has only to look to the past for the answer to that question since back then we didn't abort based on that knowledge because we didn't have the science to do it.
but back then most people with T21 were institutionalized.
i think it would be a mix of things. i think we would still be seeing a lot of institutions because a lot of people still would not be tolerant. on the other hand i think we would see a lot more inclusion and fighting for rights. and also it would be really nice to know that lili would have a way higher chance of being friends with more people who are like her.
but, being the cynic that i am, i don't think the world would be that much different. i think people's perceptions of disability are still fuct at a really fundamental level and really that will have to change 1st before anything else. but the more people with T21 that are on this planet raises the hope and possibility that things could ever change and tolerance would become the norm.

When did they start having these tests and was the reaction to it always so drastically slanted towards abortion?

i don't know when these tests came about! and i am googling now to try and find out but cannot find anything.
but it seems that Professor Jerome Lejeune invented the amniocentisis. i think it's still relatively new?

as long as society holds little tolerance for all things different, i don't think much will change. humans, on the whole, suffer from narcissism of the worst degree. people seem to want to see themselves reflected in their children above all else. anything deemed as "other" is not desirable. also the whole "what am i going to get out of it?" question factors in greatly. we can see this in the obsession with the question "can people with T21 ever be productive members of society?" our worth seems to be on not what we can give people with T21, but what can people with T21 give us?

the answer to that question, is obviously that people with T21 can give us a LOT of things.
but those things do not seem to be in line with satisfying the neverending narcissistic craving of "mirror back to me my shallow existence so i can feel good and justified in it"

we can even see this in the "more alike than different" campaign that is a well meaning campaign for inclusion of people with T21.

but really all it does is solidify that we are afraid of differences. we are afraid of "other". likeness is to be encouraged and adored. difference is to be ignored and obliterated.

when women abort their child with T21, i do not believe that most do it because they are afraid the child will "suffer". as anyone can see throughout the ages, the only suffering a person has with T21 is simply at the hands of the intolerant. the cure for T21 is simply tolerance.
this whole seemingly selfless act that they are somehow doing it for the sake of the child, from a place of love, is a smokescreen of utter bullshit. and anyone who would care to do honest self refection on that will come to the same horrifying conclusion.
women abort from because of a primal, gutteral, narcissistic fear that they will not be able to "relate" to their child because it will be different than they are.
it is an understandable fear but one that needs to be addressed into the light before anything can ever change.
as long as we are using the "suffer" smokescreen we continue to not acknowledge the real cause of things and real change cannot happen from within.

the enemy of T21 is narcissism.
this is the harsh reality no one wants to hear.


+++

Oct. 10th, 2008

i'm watching the stocks fall again.

a tiny bit of colostrum came out of my nipple the the other day.

i'm not too nauseated anymore. yay!
my wrist is even a little bit better :)

2 days until the ultrasound!!!
i'm convinced it is a boy.