may 16th , 2007

some pix from mother's day brunch and a mysterious old house i discovered :)

IMAGES

*swoons*

she grabs the back of my hair and then lunges towards my face and "kisses" it :)
she does this over and over! my little cuddle bug. my affectionate kitten cat.
i'm so in love with her. i have to get a better pic of this because it's so freaking adorable and intense!

strapped into her spacechair, she tries a biscuit quizzically

"green beans? i approve!!"

she is sitting up completely unassisted!

it's so amazing to me to see her become more and more mobile and eating more and more food!
she is rolling all over the floor now.
today i saw her sit unassisted for the very first time!

m's parent's were in town and we went to the restauraunt Heartland
http://www.heartlandrestaurant.com/
i seriously recommend it!
look at their menu (that changes daily) on their site!
lili tried the parsnip soup and even the whitefish consomme and totally LOVED it.
she has a refined palate!

at my mom's she had spinach pesto with a hint of lemon and mahi mahi with mango salsa.
she enjoys good food!
she also enjoys canned green beans.
she is not a picky eater.

she still does not eat a lot of solids, but her interest her definitely picked up so i am going to really try to feed her some every day now.

she has turned into such a little kisser!
i drink it in!

+++

my mom found me a simple little tea length ivory coloured dress for my wedding.

i've decided my wedding bouquet will be daisies.

+++

 

i posted this to this down syndrome list i am on and now i am sitting here all super never ous to what the replies will be:

 

i am wondering if anyone here has opted to NOT do any of the "early
intervention" stuff?

i have signed up to the early intervention help that our school system
here provides.
although i am pleased that this is available for those who need it, i
am wondering if it really is something that is necessary for daughter
because, so far, they haven't shown me anything i don't already know
myself through research and common sense.

for those of you who do the early intervention thing....is there
anything you and your children got out of it that you would have never
figured out on your own that you are grateful for?

because, it seems to me, that these people aren't going to show me
anything i'm not already doing myself with my daughter..as nice as
they are and how cool it is that it is free and all..and sure, and
hour of "playtime" with other people certainly isn't a bad
thing....but...
it doesn't seem to be a very necessary thing for me and my daughter.

maybe i'm just new to this and it gets more important later on and i'm
going to learn some amazing new skills to help my daughter " be all
she can be" and all?

i don't know.

my uncle had down's syndrome and he never had any early intervention
or PT or OT and he did just fine in life.
and so that also colours my vision on this somewhat.

to be perfectly frank (and i'm going to just be really blunt here
because i've been thinking of how to phrase this for WEEKS but can't
think of a good way so i'm just going to blurt it out the best way i
can and hope no one gets too upset),
i signed up for the whole rigamaroll early intervention thing because
everywhere i looked on the internet...in the blogs, on the forums and
lists..."everyone" was getting early intervention and PT and OT for
their child with DS.
i've been reading and reading and reading about people's children and
the progress they make with the PT and OT for almost a year now.
i really DON'T see any cons to PT and OT and all that. it seems like,
basically, a pretty fun playtime for the child.
and it's usually free, so you can't beat that. so really why not do it?
at least that is what finally swayed me onto the bandwagon.
i thought, what the heck, why not give it a try?
it can't hurt.

but i'm of that "hippy" mind that a child should just develop in their
own time in their own way and i did have my guard up just because of
the word "intervention". i just want lili to be herself in her own way
(as everyone wants their child to be) and i didn't want her childhood
memories to be of "strangers" trying to get her to do all these
excerises (i know , it's play too, i get that). i want her childhood
to be dandelions and butterflies and mudcakes and not treadmills and
do this and do that. *insert romantic thoughts*

i'm not doing a very good job of explaining myself...augh.

already this is asking longer than i wanted to say this. and i feel
really awkward because i don't know anyone here and i'm kind of an
oddball.

partly what i am trying to say, in gross honesty, is that, against my
gut instinct about what i feel is right for my child, i signed up for
the whole "system" thing because everyone else was doing it and had
only praises about it and i didn't want to look like a bad parent to
my "special needs child" (god, how i do hate the words "special needs"
because EVERY child has special needs).
but ya, there you have it.

every parent wants there child to "be all the can be" and everything.
but really AM i shortchanging my child if i decide to NOT plug into
the system and do what every other person with a child with T21 seems
to be doing with everything?
am i condemning her to something less than she deserves?

ok ya, there is the crux of it because as i wrote that last sentence i
started to cry :(

so it took this much hemming and hawing before i could blurt it out.

i'm scared.
i'm scared because #1 i don't want to seem like a bad parent who isn't
trying everything in my power to make lili's life the best it can be
and #2 i don't want to BE a parent who isn't trying everything in my
power to etc.

my gut feeling is that i am not a bad parent for not wanting to go
with all this early intervention stuff.
but i could be wrong.

i don't think i am, tho.
but i need to hear from other parents
ESPECIALLY is there are any on here to opted to NOT do early intervention.

i feel like i haven't been thorough in my explanation.
i know i ramble.
i don't say much but when i do it's just a volcano of words.
sorry, i'm feeling really awkward here, like the person at the party
with the really weird outfit on.

i'm just actually not having a very hard time raising my daughter.
it's been, pretty much, a complete joy and honour to raise her.
she has no health problems at all.
i wasn't devastated when i found out her diagnosis when she was born.
everything has been smooth sailing, and i have really lucked out.
she, of course, is having slow development in her gross motor skills,
but slowly but surely she is getting there with everything.
and i just "have the feeling" as i always have that we don't NEED to
be enrolled in all the early intervention stuff.

every week they come there just isn't anything new they can show me or tell me.
it seems, in all honesty, to be rather pointless for me.

BUT the pressure to keep going on with this is really a LOT for me.
i'm afraid that not only will i seem like a horrible mother if i pull out...
i actually might be incredibly stupid for doing so.
i keep waiting for this "aha" moment when these people are going to
teach me something really cool that i never would have thought of
before and i'll go "thank goodness i stayed with this or lili may have
never ever walked correctly in her entire life!"
i don't want to short change her. i want to be a good mother.
but i also don't want to do this just out of fear and just because
everyone else is.

are there any actual STATS somewhere that early intervention leads to
better quality of life for people with down syndrome?

(i also realize that "quality of life" is a highly subjective and
debatable subject. i, personally, subscribe to quality of life =
living life with joy and NOT quality of life = makes money to support
lifestyle etc that this day and age seems to, on the majority,
subscribe to)

does ANYONE know what i am feeling here?
or am i just coming off as incredibly arrogant and naive?

help :(

ana, mother of lili, almost 10 months old

p.s. sorry this was such a ramble
i'm not good at being succinct, obviously

p.p.s
i'm also not all that gung ho on inclusion either, but i'll save that
for another ramble at a later date...eek.

 

+++

 

added:

 

i must be from another planet

and i don't mean this in either an arrogant or demeaning way but just in a genuinely confused way.

in regards to my previous post, i got a reply (a nice reply) but then a link to a place where i was told i would be able to help my daughter at home.
i went to it immediately and clicked on "articles on down syndrome" http://jamesdmacdonald.org/Articles/DownSyndrome.html
the crux of it was this:

After all these years, I am confident that parents can help children with Down syndrome give and get a great deal in life if they are willing to do a few simple but often difficult things:

-play in the child’s world habitually
-make children enjoyable play partners before they are obedient students
-don’t worry about school language before children have a good vocabulary for daily natural communication
-be very careful not to expect too little (by doing too much for children) or to expect too much (by setting up impossible jobs
-pay more attention to positive little steps than to things you may think are mistakes
-act and communicate in ways children can do (matching)
-interact back and forth throughout the day
-be sure children are giving to you as much as you are giving to them

seriously, i am not trying to be an arrogant know-it-all asshole but WUT???
isn't this just parenting 101 time duh times INFINITY?

isn't this what anyone would do for ANY child?

i'm so effing sad to see that a few paragraphs BEFORE that it said:

"Within the last five years, I have followed up several of our children with Down syndrome, sadly to find that many of them had also become socially isolated and communicated a lot less than the knowledge they had. "

wha???
seriously, (i repeat myself), all it would take is these "simple but difficult" things to have that NOT be the result?

DIFFICULT HOW?
no really......HOW are those things DIFFICULT....at ALL????

really...WHO IS BEING "RETARDED" HERE?

sorry to get all uppity on my flip out box of "attachment parenting"
but....WUT?????????