january 31, 2008
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T21 is not like autism at all
but for some reason, they get lumped in together a lot.
maybe kind of in the same way that for people who listen to only classical music, punk and heavy metal might sound almost the same.

anyway, someone showed me this:
http://aspergersquare8.blogspot.com/2008/01/autism-all-day.html

and i'm really glad they did because it's a lot like how i feel about T21
so, it seems, there are places here and there where the 2 do meet in terms of acceptance

that link brought me to this link:
http://leftbrainrightbrain.co.uk/?p=698

which is also interesting and i think i'll peruse that site some more...

i'm reading this now which is really really powerful:

http://ani.autistics.org/dont_mourn.html

and now i'm reading this:
http://autismnaturalvariation.blogspot.com/2006/07/prenatal-genetic-testing-wrong-and.html

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http://en.wikipedia.org/wiki/Neurodiversity

i propose chromodiversity

genetidiversity

+++

ok, i make milk and then go to sleep now...

 

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lili's cold is a tiny bit better. she is still so stuffed up, tho.
but she is eating better and she is taking a lot of naps today, which is very good.
i rubbed vucks vapor rub on her last night and was surprised by the intensity of emotional charge i got from that as i recalled all the times my parents lovingly did that to me when i was sick... and here i was rubbing vick's on my own child's soft little warm chest.
wow!

and i've turned the crockpot into a humidifier in the bedroom.

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on another note, i'm SO PSYCHED FOR LOST TONIGHT!
woo hoo! :)

it's wild that lost is finally here again. i remember i was still pregnant when the last season ended. and i realized that when this new season arrived lili would be 6 months old. and i tried so hard to imagine that then but just couldn't imagine that the next time i would be seeing lost i would be watching it with a 6 month year old baby by my side!

and voila! here it is! the time has arrived!

it's funny how that works :)

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although...i am torn and also want to watch the big shoot out between hillary and obama tonight, too.
how perfect that it's happening in hollywood.
and outside the kodak theater right now there are people waving paintings of obama done in the style of warhol's marilyn portraits.
what a world...

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well, i have resisted getting plugged into "the system" for lili because i am not much of a system type person.
but what the hey, i don't think it can hurt so i'm going to give it all a try.
so i called the down syndrome association of minnesota to figure out where to start with all of it.
they gave me a number to an early intervention programme thing and now i have to wait for their phone call back either today or monday.

then, i am told, a nurse will come out to my house to evaluate lili and verify that she does, indeed, have T21.
and from there i will find out more. like if someone will come to my house and give lili OT and PT and such.
this is all free so hey...good deal. and more stimulation for lili. i think she will enjoy it :)

now that i know more about all of this i am not so raising my eyebrow at it in hesitation being all wary.

and then i guess the people that come over to help me, those are the ones i ask about seeing a social worker and stuff to get plugged in to all of the services and health care and everything for lili.

and the down syndrome association told me to call them back if i run into any snags or get the run around from anyone.
it sounds like this is going to be a long and dragged out process of twists and turns?
god, i sure hope not.
but best i start in on it now if it really is going to be that complex.

as much as i was against all of this before, for a myriad of reasons, i am actually kind of looking forward to it now because it is interesting to me.
i'd actually like a few people to come over and play with lili. and i'm interested in meeting some new people because i'm going just a tiny bit stir crazy being in this apartment in the wintertime with almost no adult interaction besides m.
so this will be good not only for lili, but also for me, i think.

there are also some support groups i'd like to go to, and i wanted to go to them this month but didn't have the $ for a cab and it was the holidays.
but next month i'll do it.
it's not so much that i need support as much as i just really want some new things to do :)
somewhere to go...people to meet!

the DS association was surprised that i was not all ready hooked up into all of this. they said that the hospital should have given me all these pamphlets and videos when she was born. then i told them i didn't give birth to her in a hospital.

so i'm going to be sent all of these things now. it will be interesting to see what they all say.
i'm sure it won't be anything new to me now as i've researched so much now.

i still am a bit wary about all of this.
i still feel that much of the T21 culture is more behind on their way of thinking than i would like to see.
for instance, i still feel a lot of it is a sort of "woe is me i'm a special little snowflake" feeling.
you can even see this being over compensated for in the whole "my child is a special angel gift from god we are blessed with the extra chromosome" thing. i mean, i AGREE, their child IS a gift and the extra chromosome IS a blessing...but when you have to advertise this fact over and over it seems that this is stemming from an insecurity they may still have about it all. and i understand where that insecurity comes from and why it is there. i really do.
i just wish that people were more forthright about it and just said it upfront because that is the way to work through it, IMO.

maybe most people are just not accustomed to being different. so many people spend so much of their lives trying to fit in that when they get thrown a curveball that makes it impossible to truly ever fit in, they have to sramble to adjust.
and it IS a HUGE adjustment. not fitting in is very draining a lot of the time. having people stare at you, ask questions, judge, assume.
i've spent almost my whole life dealing with it so i've already got that whole way of filtering that energy pretty much down (almost).
it must be mortifying to a lot of people who are thrust willy nilly inot the different spectrum.

i really feel that if people TRULY thought the extra chromosome was a gift from god, there wouldn't be so much underlying pity/putting T21 on an angelic pedestal and scientists saying they are trying to figure out a way to PREVENT down syndrome from happening. even on websites purporting to be all happy about T21...saying people with T21 are great and lead enriching lives...there is still this whole vibe of "support our cause so we can give money to the scientists to learn how to prevent this".

what kind of effed up message does that send to lili that associations that are there to supposedly lift her up in society are also , at the same time, working towards preventing her from happening in the first place?

this is why i am wary.

if it IS a gift from god and a blessing, wouldn't you be trying to figure out ways to INCREASE the chances of down syndrome?
wouldn't this be a sought after thing?

i just see a lot of conflicts and hypocrisy with a lot of it and i'm looking for other people who see this to so we can begin to change to whole way down syndrome is perceived. i think the insecurity needs to be called out and talked about more if things are to move forward.
and if that is going to happen, the kid gloves need to come off. (i am aries hear me walk on eggshells)

because i certainly would not have wanted to prevent lili from happening in her current form. really!
and i'm sure other parents must feel the same way about their children.

these are the kinds of things i would like to write to some mailing lists i am on about T21 to start a dialogue. but i'm afraid i'd be roasted at the stake by a lot of the parents on there :/