re: I feel like giving up

[Guest guest]

GRACE -- YOU'RE GETTING BETTER!!!!

Anger >>> this is what? Stage two in the grieving process? This is actually

a good thing. I think the five stages of grieving we ALL go through goes

like this: denial, anger, bargaining, depression and acceptance.

Actually, you're going through anger and bargaining at the same time by

asking why something didn't happen to you instead.

And you ARE grieving Grace. You're grieving the two perfect little girls you

and Shaun brought in to the world.

You're getting better Grace. I know you don't believe that right now, but

you are. Most of us have been through it. I don't think anybody here ever

had to go through double diagnoses at the exact same time. (But I could be

wrong).

Hang in there, Grace. It'll be easier once you're through this stage,

Sissi

[Guest guest]

Grace, we all feel this way at times. When Jake was 3, I'd all but cry every

time I saw him in the church nursery with all the other kids. It showed how

different he was from all the other kids. But I have learned to enjoy Jake for

who he is. He is not like the other kids, nor will he ever be, but he is happy

and that's what matters. I still go through the " why me's " but not as often

now. Things will get better as your girls get older.

At three, Jake was still not verbal. He was receiving speech and OT once a

week. He attended a special needs preschool 2 1/2 hours a day, four days a

week. That was all we did. I didn't have the energy to do all these home

programs. It was hard enough for me just to hold myself emotionally and

mentally together.

Do what you can, Grace. No one can do it all. Love your kids and love

yourself.

Janae

, 8, ADD

Jake, 5, autism

[Guest guest]

Poor Grace!

I can certainly understand why you feel this way. However I persist in

believing you will attend your daughter's college graduations. Maybe

they'll be a year or two later than they would have been, but I imagine your

girls are bright girls.

And, Grace, THEY ARE BABIES!

Especially regarding autism. We are talking about developmental delays and

that means your girls, essentially, are younger than their years. It is not

related to basic intelligence although it most certainly affects the way

they would test on intelligence.

Again, Putter was like your girls. And more like Madison than Sydney. I was

not convinced that he would be among the talking. He had no speech and he

tested pretty severely autistic on the CARS; his first CARS test that I have

a score for was in the mid forties and that was after months of therapies so

I think it is quite likely that an earlier test would have put him up near

fifty, or maybe even above.

He has done well and at the conference on Friday (you may have missed this

being no mail) they said that they had hopes of him attending regular

kindergarten and regular education.

Who would ever have thought that the little wild creature I brought to that

school almost two years ago -- he was three years, nine months at his first

day of school -- would have made so much progress.

Like you, I feared I was too late. Why had I let my rotten husband tell me

that Putter was okay when in my heart I knew he was not? What if he had had

intervention at two? Reading Let Me Hear Your Voice made me feel ill

because Maurice's children were scarcely two. Putter was OLD!!!

It was too LATE!!! I had ruined my kid!!!

The school didn't seem to think so and they did not waste any time worrying

about might-have-beens. They worked with what they had. No regrets, Grace.

It doesn't help. Don't look back and all that cr*p; just move forward.

Take the coffee and doughnuts at my church. I have been taking Putter

persistently despite the horrors of his behavior there. At first it was SO

embarrassing. He would take doughtnut after doughnut, lick the pink icing

off and toss the doughnut over his shoulder and go back for more. He would

have taken an endless supply. I compromised. I fought him sometimes and

sometimes, from sheer exhaustion, I pretended I didn't see him. I am sure

the people at the doughnut table thought I was just the worst mother ever

(but aren't they Christians? Should they judge me? Ha, ha, ha...) I put a

lot of money in the donation bowl to make up for the endless doughnuts he

destroyed and I suffered a lot of guilt. Should I be managing better? I

looked so desperate that people regularly took pity on me and helped me get

out to my car of I WOULD STILL BE THERE IN THE DOUGHNUT HALL. Or should I

say " doughnut hell. "

Today Putter went in the coffee and doughnut room and put a dollar in the

bowl. He took a doughnut and ate the edges of it. He left the partially

eaten doughnut on his napkin. Then, at his request, I got him and Robbie

bagels. Putter ate all of them. When he and Robbie started a wild chasing

game, they stopped when I told them to and came and sat down. When we were

finished with our doughnuts, I threw our trash away (on bad days I used to

abandon it), I said it was time to go and Putter headed towards the door

with Robbie close behind. Oh, this was a good day and there will be bad

ones ahead, but he has made so much progress from his Little Wild Animal

Days.

Now I don't know if you need to have a home program as well as the school.

I am pretty sure that you do not need to turn a room into a school room.

Real people can't always do things like that And, yes, home programs are

hideously expensive. When Putter was going to school half days, which he

did his whole first year of school, I was very worried about the lack of a

home program to supplement the fifteen hours of ABA that he got at school.

So I took him to speech therapy, and OT and he had extra ABA (two hours a

week) at the Autism Center, plus for a short while I hired a local teenager

to work with him every afternoon for an hour. That lasted until Putter bit

the kid on the back; after the bite, for some reason the kid lost his

enthusiasm for the project, even though I attempted to sell it to him as a

really cool science fair project.

But Putter did well on half days and only when he was four and a half did he

start thirty hours of ABA. He made excellent progress with fifteen hours

and with thirty. Now I am wondering if he wasn't just as well that he

started slower because he was so attached that he had a very hard time

separating from me so perhaps it was all for the best. But, of course, I

will never know. I will never know if he would have done extremely well

with intensive therapy at two, perhaps even losing the label of autism the

way Maurice's children did.

And when I think about it, I am not sure I want to know how things would

have come out if I had done things different. We are doing fine so (like

Edith Piaf) I will regret nothing.

The truth is both terrible and consoling. There is only so much you can do;

we do not have full control over how our children develop and this goes for

autistic and NT kids. On the Me-List there are people who have been doing

ABA for years and years and whose children still have poor outcomes, despite

insane amounts of time and money spent on their child. Some of those people

may have the wrong therapy for their child. Some of them may need something

new (I mean, if it doesn't work after eight years, maybe something else

will!) But some of those children are just going to make very very slow

progress and there is nothing anyone can do about it. Lovaas himself

expected that ABA would be a three year effort so you can see that after

around three years, it is time to move on, perhaps to another ABA based

program such as Verbal Behavior, but perhaps to something else entirely.

Then there are those irritating people whose children seem to recover, or

nearly so, with very little effort on the part of the parents. I remember

someone telling me about the only recovered kid she knew: he had a single

mom and she couldn't afford anything. She just sent him to daycare. He is

fine. I have a friend whose son is a little older than Putter; she is a

wonderful loving mother and she is doing absolutely everything. He has a

home program after thirty hours of ABA at school. He is on the GFCF diet,

on all kinds of supplements and, since she is a medical doctor herself, she

is up on all the latest biomedical interventions and he has the benefit from

them. He has done much better since he started ABA, but Putter is currently

doing better. Now I work hard on Putter, and he has had many interventions,

but I have not spent the money that she has (well, I lack the money that she

does, frankly) and I have not fought as hard as she has. It's just not

fair.

Go read ( " Oh, great, " says Grace gloomily, " more reading assignments. " )

There's a Boy In There. That mother did nothing with her son. She sent him

to regular school. It was awful. He managed, somehow, and he is pretty

okay today.

I found that book very hopeful when I was confronting my own little wild

animal who I could not imagine anyone teaching.

So what to do? Well, you have to strike a balance between totally ransoming

your life for your daughters' possible success and neglecting them. My own

feeling is that it probably is wise to do as much as you can in the early

years because those years do seem important, but only you can decide how

much you can do. Is it worth to destroy your life and happiness so that you

can have a room for a home program? Maybe -- it would be temporary after

all. Maybe not -- your girls may do fine on the school's program plus some

supplemental programs after school hours. I think I would be inclined to go

with just school at first because it is hard to add more than one new thing

to your life. See how school goes. If it looks really effective, then I

might be inclined to add on a few hours of ABA a week, but not necessarily a

big home program. There will be a correct balance that is right for your

children and you will need to find it. More hours beyond what they can

handle will not be more effective and may be less effective.

I remember when I was a dancer practicing those turns called pirouettes.

Pirouette practice is a microcosm of learning. At first when you do a

pirouette and you haven't done one for a while, you find that the turns are

a bit shaky. As you practice a bit, they get pretty good (well, I was a

natural turner so that was my experience anyway), and then as you practice

more and more, the turns get worse. Your practice goes stale. It's time to

stop.

You will need to see where Sydney and Madison grow stale. Ideally the

behavioralists working with them will know but that is not always true. You

know them best. You may find one girl needs more hours than the other; you

may find that the whole ABA program that you are considering for them is not

right for them. You just don't know and I think this is one of the most

stressful things for us all. We don't know if we are doing the right

things; we don't know if something better, that we have not yet tried is out

there. We never will. Just work with what you have and go with your gut

feelings about whether it is the right approach or not. You'll know, truly

you will.

You are just at the beginning. When you start to see some real progress and

you are getting frequent Holy Craps! from Jacquie, then you will feel much

better much of the time. You will gain confidence that you are doing the

right thing and you will start to have your own definite ideas about the

approach to take with each of your daughters.

You will write encouraging letters to the hysterical mothers of newly

diagnosed children and tell them of the wonderful progress of Madison and

Sydney and how you cried when Madison said " I love you " for the first time

and how wonderful it was when you watched Sydney writing her name at five.

You will write about the funny things they say about your new dog and how

cute they looked in their Sunday School classes and how well they

participated. You will write of their social difficulties in high school

and how well they are overcoming them and how proud you are of them. These

mothers will read your message and they will doubt that it will ever happen

to them, just as you are doubting my words right now, and just as I doubted

the people who told me that Putter would talk two years ago.

Sydney and Madison's college graduation, Grace. It's coming up. Buy the

invitations now as an act of hope for the future and because you like to

shop.

Salli Sunshine

[Guest guest]

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

>life.

Hmm...how'd that work out for ya?

> 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.<<<<<<

None of this is new to us, Grace. I guarantee you we ALL understand.

> 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.<<<

Well, first of all...I haven't even read thru this yet, but I *know*

it won't be stupid OR petty. - So vent away.

> 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.<<<<<

Oh Grace...we all can SOOOOOOO relate to this. I realize, before I

go any farther, that this is the place where you say " Why in the H***

do *I* have to take care of these kids!!! Why won't someone do it FOR

me!!! " uh-huh.

> 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. " <<<

Unfortunately Grace, this whole process is not " step-by-step " . All

kids are individuals. And even though they are rigid and like

routine, it seems that they change CONSTANTLY. Just when you think

you've got it figured out, BAM, something new comes along. You need

to pace yourself hon, this is the long haul. All of the information

coming at you from all sides all at once from people who may or may

not understand, people who may or may not be experts, etc.etc.

Sometimes it IS too much.. It is, period. That's why we are here.

> 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? " <<<<

Autism is not fun, no doubt about it. But it is so fascinating

Grace. And if you can get past all the crap (I know, I know) you'll

see so much that you never would see in an NT child. And just for

the record, there are lots of problems with NT kids too, they are

just different. and in some cases worse. (Just trying to throw in a

bit of perspective there)

>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.<<<<

Did I already say that we can ALL relate to this??? Yes, I think I

did. NOTHING has turned out the way it was intended here. Hardly. And

I have taken that quite personally for a lot of years. But Grace,

honestly, I am finding peace. and I am starting to except that maybe

this is my lot in life. To try and make a difference. I sure feel

better than I used to. Accepting instead of trying to fight it.

> 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.<<<<<

OK..I know THAT is a pity-party...go ahead, fine...It's ok. but, let

me tell you something. It's never, never too late. NEVER. I promise

on a stack of *insert book of choice here* that it will never be too

late for your girls, Grace. Starting now is ok. It's a long-term

deal. Period. I wish I could do or say something that would help you

believe that. and no, you are not a wretched, cursed loser.

>

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

>well into the rage section now. .

>Yet everything is so damn hopeless.<<<

Nope. You are wrong. Angry, yes. Rage, yes. Hopeless, No!

>>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?<<<<

Grace, you know what? The girls are HAPPY. They don't realize that

there is *something wrong*. Being autistic is a state of being. It

doesn't have to be viewed as " wrong " . Yes, there are issues that

need to be addressed and that CAN be addressed. But autism in itself

is not a curse or something to feel ashamed about.

>

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

>far as you have.<<<

Sometimes I dont' know either Grace. I been on the edge of that

cliff, wanting to jump off and saying " Yep, I'm done...don't wanna do

this anymore " . But that's not what we do. We perservere. We do what

we can to make sure our children are given every chance possible in

this miserable world. I don't know what else to say except that if I

was there with you I would hold you and let you cry those tears of

anger and rage until they were gone. I really think you are on your

way to acceptance Grace. What you are going thru is the hardest

part. And not for the kids, but for you.

If you wanna talk, call me. or I'll call you. You know my e-mail.

If not, that's ok too. I'll be thinking about you.

Penny {{{hugs}}}}

[Guest guest]

Grace,

I can't say anything to make you feel differently than you are. It does get

better though. And school can help the girls. My boys only had 3 1/2 hours

of intervention pre school a day and they were in classes of mixed

disabilities...not specifically autism.

I hope the anger eases for you soon and you feel more capable of what like

has handed you. (((((Grace)))))

Sue

----------------------------------------------------

Sign Up for NetZero Platinum Today

Only $9.95 per month!

http://my.netzero.net/s/signup?r=platinum & refcd=PT97

[Guest guest]

wow, I never realized that there was stages to this. I never went though the

denial stage but I sure have gone though the depression and anger stages. I have

always accepted that was autistic but I have never accepted the stuff I

have to go thought to get what he needs. Bargaining I have never realize or ever

thought I bargain about things. I fight for what he needs and I normally win

most fights. I really am going to have to start paying attention to the

bargaining a little bit more.

But Sissi thanks for making me look at this in a different way.

Lori

Re: I feel like giving up

GRACE -- YOU'RE GETTING BETTER!!!!

Anger >>> this is what? Stage two in the grieving process? This is actually

a good thing. I think the five stages of grieving we ALL go through goes

like this: denial, anger, bargaining, depression and acceptance.

Actually, you're going through anger and bargaining at the same time by

asking why something didn't happen to you instead.

And you ARE grieving Grace. You're grieving the two perfect little girls you

and Shaun brought in to the world.

You're getting better Grace. I know you don't believe that right now, but

you are. Most of us have been through it. I don't think anybody here ever

had to go through double diagnoses at the exact same time. (But I could be

wrong).

Hang in there, Grace. It'll be easier once you're through this stage,

Sissi

[Guest guest]

Grace I would like to say that you will get though this and I wish you all the

best.

Lori

Re: I feel like giving up

GRACE -- YOU'RE GETTING BETTER!!!!

Anger >>> this is what? Stage two in the grieving process? This is actually

a good thing. I think the five stages of grieving we ALL go through goes

like this: denial, anger, bargaining, depression and acceptance.

Actually, you're going through anger and bargaining at the same time by

asking why something didn't happen to you instead.

And you ARE grieving Grace. You're grieving the two perfect little girls you

and Shaun brought in to the world.

You're getting better Grace. I know you don't believe that right now, but

you are. Most of us have been through it. I don't think anybody here ever

had to go through double diagnoses at the exact same time. (But I could be

wrong).

Hang in there, Grace. It'll be easier once you're through this stage,

Sissi

[Guest guest]

Grace,

I go through this on a regular basis, and I also have two kids with

problems (different but still problems). This is very normal and we

do feel bad that our kids arent " easy " In terms of what you see as

little gains, those skills such as following commands, and clapping

hands are extremely difficult for 3 year old autistic kids, so its

really a huge gain to get that going, believe it or not. I am

learning this as I am teaching to have conversations, I see how

desparately hard it is for him to put these words together. As far

as a break, you probably could get a medicaid or a beckett

waiver and get respite/and or therapy. As far as the whole Loovas,

supervising/lead therapist, Ive seen home programs done by parents

that worked as well. You could find out the programs that theyre

doing in school and do some carryover, it doesnt have to be discrete

trials, and if you can get the waiver or board of ed funding then

make a decision about getting this whole team together. You might

find that you dont really need it. Or you could hire a college

student who is willing to learn or knows ABA/Net, and you could pay a

reasonable fee and you would get some respite. If you re-read some

of " let me hear your voice " the therapist the mother hired had almost

no experience, and the mother did a great deal of the teaching. Dont

get sold on this 40 hour stuff, its not a guarantee and need not be

necessary. You have to use instincts sometimes. Im not sure how to

really make you feel less pain, its a lot easier to give you some

concrete suggestions, because at least you know there are options out

there. If you do decide to make that room a discrete trial room, you

can still decorate it nicely (not too distracting) and have fun

buying some educational toys, (you'll need those), and you may enjoy

doing stuff with them. I dont socialize much either, but, I do

manage. Its hard because Im not thrilled with my in-laws as

babysitters either, they sit around talking in another language, so

doesnt get involved in their conversation- it does benefit

little , who is now bi-lingual. It does get easier, but, I

know that pain.

Thea

> 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...

[Guest guest]

I think the five stages of grieving we ALL go through goes

> like this: denial, anger, bargaining, depression and acceptance.

> Actually, you're going through anger and bargaining at the same

time by

> asking why something didn't happen to you instead.

> And you ARE grieving Grace.

I think there is some depression in there too with the I give up

feelings. We have all gone through it Grace. We all have to grieve

in our own way before we can go on. Sometimes I think I even take a

steop back, but then I go on again. You will too.

>

> Hang in there, Grace. It'll be easier once you're through this

stage,

>

It will get better as the girls learn new skills. Sissi is right.

Hang in there. Vent all you need to. We understand.

[Guest guest]

> GRACE -- YOU'RE GETTING BETTER!!!!

Good grief, Sissi.

Leave it to Sissi to declare THIS when I am falling apart LOL.

>

> Anger >>> this is what? Stage two in the grieving process? This is

actually

> a good thing. I think the five stages of grieving we ALL go through goes

> like this: denial, anger, bargaining, depression and acceptance.

The thing was that I thought I had gone through all that. I mean, that is

what I wasted two years of knowing the dx and not doing anything about it,

for, isn't it? That is what I told myself anyhow. That was how I justified

wasting so much precious time.

But the other night, when all that RAGE just swarmed back, I was stuck right

where I was 2 years ago. Not only did it come back, it was WORSE. It was

the saddest, angriest, and ugliest thing I'd seen in awhile.

I thought I had accepted it. I thought I was finding a way to live with it.

And then BAM - - it was all gone. If something had to come back, why

didn't I get my denial tactics back? THAT was nice!!!

> You're getting better Grace. I know you don't believe that right now, but

> you are. Most of us have been through it. I don't think anybody here ever

> had to go through double diagnoses at the exact same time. (But I could be

> wrong).

Thanks Sissi.

I feel much better today after having gotten some sleep and just letting

some time pass. I'm still pissed as hell that my in-laws could not manage

for 2 hours, but I have bigger fish to fry.

Thank you, Sissi!

Grace

[Guest guest]

Awwww <Grace>! That is a big hug! Do you wan to do coffee! THis weekend!

At 11:47 PM 10/20/2001, you 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@...

>

>

>

>

>

>

>

>

[Guest guest]

I am not surprised that your mil couldn't handle the kids for even two hours. I

am sorry that she couldn't keep that fact to herself for another hour so you all

could have some fun.

I feel completely cheated out of normal life, also. I made the mistake of

staying home because trying to take kids places was too hard. One day I looked

around and realized that I rarely left my home and nobody really cared except

me. I certainly did not expect to give up my whole social life entirely for my

children, but that is what happened.

Someone told me once (a Wiccan) that he believed we are all here for a purpose

and if we do it right then we reach (whatever " Heaven " is in the Wiccan religion

- I forget) and if we mess up and make wrong choices then we will be

reincarnated as human and try again to learn the lesson or perform the task we

were meant to learn or perform.

I was horrified. " You mean I would have to come back and do all this again? "

I didn't even have children yet. I had no idea how horrifying the idea of

coming back and living life again could be. If I could come back and live this

life over again - with all the knowledge I have now, of course - then we might

be talking about something worthwhile. But to start all over in a new

generation with no knowledge from the previous life (except what I might learn

from dreams)???

Eww.

You got excellent advice from everyone. Lots of love and sympathy from everyone

else. I am erring on the side of love and sympathy. I have too often wanted to

quit this job and had to realize that nobody else is going to want it.

You know you will go on, Grace. What else can you do? Weep, wail, gnash your

teeth, then get up and wade through another day. Knowing that the girls are

going to be there needing food and transportation will drag your butt out of bed

and get you through another day.

If you get to feeling better, you might want to let some sunshine in.....

Marilla wasn't diagnosed and received no special intervention until she was

almost five years old. Sherman was four. When they were diagnosed they had

very little language and grave behavioral problems (well, grave for me and

anyone who was charged with babysitting for a few hours on my birthday). All

the language Marilla had at that time was shouting Disney princess names when

she was upset, counting and alphabets. She had no idea what you were saying

when you asked her, " Where is your.....? " At eight years now she is developing

independent sentences and she can answer questions and ask for what she needs.

Her major behavior problems are gone and we just have some (probably genetic)

control issues that she needs to learn to get over. Sherman had no words at

all. He did not seem to understand much of anything and much of the time he

didn't even seem to be " in there " , except that he was very, very happy and

occasionally very affectionate.

Syd and Maddie have got the best advantage. They have an early diagnosis and a

mom who feels the weight of the responsibility handed to her. The behavioral

classes you are talking about are things that I didn't even know existed four

years ago. The thought of going to the school district and fighting for

services they don't even want to admit they have..... well, that is seriously

brave and daring of you to take them on. I had to train Marilla and Sherman to

sit and stay by repeating myself endlessly.... then putting them in daycare with

a very loving, very no-nonsense worker who taught Marilla her first echolalic

sentence, " Will you PLEASE Sit Down!!! "

You are going to be fine. Just grit your teeth and get through the next three

years or so however you can. Three years isn't so long. One day you will find

yourself making sandwiches for children who will actually eat them. Children

who are playing quietly somewhere and not destroying something or each other.

Every now and then I feel a very nice sense of peace. I am doing this horrible

job well, and I am not very miserable about it all the time. The kids are

progressing steadily and I have reason to hope that they will be able to pass

for " quirky " by the time they are adults.

It ain't easy, but it could be..... well, you know.

Love to you, Grace. We're all in this together.

Smiles!

36 year old wife to , 41

Mom to:

na-14-NT

Marilla-8-Autistic

Sherman-7-Autistic

Greilyn-1, almost 2-NT (so far)

" It is never too late to start from where you are. The future is whatever you

want it to be. " Dr. , Port

I feel like giving up

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@...

[Guest guest]

>

>Someone told me once (a Wiccan) that he believed we are all here for a

>purpose and if we do it right then we reach (whatever " Heaven " is in the

>Wiccan religion - I forget) and if we mess up and make wrong choices then

>we will be reincarnated as human and try again to learn the lesson or

>perform the task we were meant to learn or perform.

Thaks V I am sure I f@$ked up somewhere and coming back! The Autism is just

a preview of what is yet to come!

>The kids are progressing steadily and I have reason to hope that they will

>be able to pass for " quirky " by the time they are adults.

>

>I love how you put that !

Wife to

Mom to Ben (aka Godzilla)

On call milk machine to Abby(aka stinkerbell)

" Some days you are the Bug, some days you are the Windshield "