Re: I feel like giving up GRACE

[Guest guest]

-Grace

I don't expect that this will help any but it is the firsr thing that

comes to mind. Probably it isn't what you wanted in a response

either.

My Mom was up last week and one of the days she looks at me and

says: " how do you do it? " " I would go crazy doing this every

day. " and I said to her " Mom I do it because I have to> I do it for

my kids. I do it so that when I am gone, they will be able to go on

with out me walking by them every step of the way. I have to do it

now be cause if I don' they won't be able to either. " I know that

isn't very inspiring. But that is the way it is. I am one of the

lucky ones here. My boys are high functioning and if they have to be

on the spectrum, I suppose that is the place to be. But even though

they are high functioning we still struggle everyday. It is tough

but we get through it every day and we even have good times and that

is what I have to focus on.

Have you applied for SSI or the Kattie Beckett Waiver (Medicaid based

on disability) ?? If you haven't I encourage you to do it. It can

help you out financially with therapies and other expensess for your

girls. If you haven't gotten this already I know it will help if you

didn't have to worry about how you were going to pay for everything

all on your own. Just a thought.

I wish I could say or do something that would make you feel better

but I know my words won't do a thing for you. Just remember you are

not alone out there even on the darkest days there is someone here

who understands.

CHRIS

-- In parenting_autism@y..., " Grace Keh " <gracekeh@h...> wrote:

> I went to no-mail so that I could cut out a " little autism " from my

life.

>

> All the thoughts in my head + all the reading + the kids' true

autism +

> first week of preschool = MENTAL DISASTER. I felt like adding on

my autism

> lists to that would brew something really horrible.

> But tonight, I don't have anyone else to talk to, so here I am.

What I am

> about to write about will be stupid and petty to most of you, and

I'll

> apologize beforehand. I feel like screaming it to the world, but

that would

> make me insane, and I would probably get taken away then, and

tonight's

> events prove that there is indeed nobody on earth who will take

care of my

> kids then. So allow me to vent.

>

> We had a birthday party to attend tonight. My friend's daughter

just had

> her first birthday, and all of the friends we have in this area

were getting

> together for this event at their house, which they had just moved

into, so

> it was a housewarming birthday party type of thing. It was to be

the first

> night in a long, long time that we've gotten together. Everyone

used to get

> together here a couple of times a month, but since the girls'

autism has

> become obvious, I've avoided it, which meant nobody else was doing

it. So

> we were all looking forward to this tonight.

> Of course, I didn't want to take the kids with me. Not everyone

there

> really knows about the girls' being autistic, and even if they did -

-if I

> have the kids with me, I can't do anything, so I asked my in-laws

to watch

> them. Just for the evening until we came to pick them up.

> We got to my friend's house at 8 PM. Had dinner and was just

cleaning up

> dinner when Shaun's cellphone rang. I looked at the clock, it was

9:28 PM.

> MIL is freaking out for us to come home, the kids are out of control

> according to her. I told her to put them to bed, but she says she

can't

> force them to go upstairs. What to do, what to do, she says........

> So Shaun and I picked them up and came home. LIFE SUCKS.

>

> And then all the reading.... it's driving me crazy. I'm reading so

that I

> know what to do for my kids, step by step. Step by fu%# & %* & # step,

and even

> so, it all looks so hopeless. I feel like throwing my arms up in

the air

> and screaming " WHY THE F & & ^$ BOTHER WITH THIS? " - - -except - - -

they are

> my children, my flesh and blood, and that is one right I do not

have. But

> it's all such a HUGE sacrifice (and well beyond anything I thought

I would

> have to give up to become a mom.... ) and so much work to

accomplish so very

> little by little. I mean, I sit there reading, and am thinking....

> " differential reinforcements..... I need to put my kids through

freaking

> obedience school to get them to sit, stand, clap hands, or point at

> something, and even then, it ain't much. "

> Seeing my friend's 1 year old daughter was upsetting. Why should

they have

> it so easy? No, no..... more accurate would be " Why can't I have

it that

> easy? " Why can't I have as much hope for my kids as she does for

hers? Why

> can't I get a little break for even one of my girls? Just one.

Please just

> make one child okay. I won't ask for two, I swear... just one

child. Give

> me something to hang onto, you know? I mean, this is like throwing

me out

> in the middle of the ocean with no lifejacket, and asking me to

wade when

> nobody knows where I am. I haven't lived a perfect life by any

means, but

> for the love of God, did I really deserve this much? And even if I

did....

> why my children? Why not paralyze me, why not just rip my brains

out - - -

> WHY MY CHILDREN? And why autism?

>

> Preschool went great for Syd this week, but you know what - - -

it's not

> going to be enough hours. Then again, nothing is ever going to be

enough.

> I need to implement an in-home therapy system, and it will cost up

the

> wazoo, and we don't have a couple extra thousand to put into this

every

> month. Meaning... I have to fight my school district to give me 30

hours of

> in-home therapy. I need to find a supervising behaviorist, a

clinical

> therapist, and at least 4-5 more therapists below them. I need to

> reorganize the house to make it conducive to " schooling " . I would

have

> bought a school if I wanted to live in a school. I love my house,

and I

> wanted to put my energy into decorating it and making it truly my

own. I

> wanted something, whether it be a house or a dog or a hobby, but

something

> that I could tend to and create into something that I wanted it to

be.

> Something that turns out the way I intend. Now I need to empty out

the one

> extra room I have to make it into a discrete trial f42 & $^$%$#^# & $!

@%!%^%^ & $

> ROOM. My house is small even for four of us to live here. Now we

get to

> add one that many more people. I will undoubtedly become

claustrophobic in

> no time.

> Oh, and with everything being time-sensitive, I've wasted so much

time, and

> have very little time left to put all of this into effect. It

should have

> been done last year, never mind next week or next month. It should

all have

> been done a long time ago. What a wretched and cursed loser I am.

>

> Angry? You bet. No wait, I am beyond angry. I am past angry and

well into

> the rage section now. It's really ugly here, and I don't like it

anymore

> than I liked the sad stage or the anguish stage. I feel bitterness

running

> through me, and all these ugly emotions stand in stark contrast to

the love

> I feel for my children when I look at their cute little faces, or

chubby

> little feet. The torment I feel is subsided momentarily only by

Madison's

> pudgy cheeks or soft skin, or her surprise kisses.

> The murderous rage I feel is soothed only by the pride I feel when

I see

> Syd grab her little backpack, thinking she's going to school.

> Yet everything is so damn hopeless. I feel like grabbing her and

yelling,

> " Don't you know NOTHING will make you better? NOTHING? Don't you

know

> there is no help for us out there? Don't you realize that there is

nothing

> I can do to make you all better again? Do you see that everything

is beyond

> my control? EVERYTHING!!!! It's all out of my control, so put that

> backpack down - what are you so damn happy about - - - nobody can

help us,

> do you understand that - - - - - - so let's just give up. "

>

> I don't know how you guys do this. I don't know how you made it as

far as

> you have.

> I can't do this anymore, I just can't do this anymore.

> I said I wasn't afraid of dying. Now I am. I'm afraid that if I

end up in

> hell, it will be just a continuation of this life, and nothing

could scare

> me more.

>

> Grace

> Mom to twin girls Sydney and Madison

> Born 3/28/98

> Wife to Shaun 1/11/97

> Reply to: gracekeh@h...