Re: Judging Amy

[Guest guest]

> But now I see why. Syd won't stop crying, screaming, having a fit and

then

> some. She just will not stop. I can't console my child.

> See what I mean, Salli? If she loved me, I should be able to console her

> when she's upset.

But, Grace, I cannot always console any child of mine. Yes, the ones with

autism are the least consoled by human comforts; there are other things that

will comfort them and you will find those things sometimes but not always.

Putter used to scream and scream in the car and I would reach back and hold

his foot and he would be calm. Not sure why that works but it is some

autistic reason; foot pressure or something calms him down.

That should be a basic and universal thing... taken for

> granted. A mom should be able to console her child without that child

> throwing her head on the mom's forehead, or that child freaking out even

> more because the mom is trying to make her feel better.

Even Robbie does this. I try to say nice things to him and he screams " NO! "

and he kicks at me and has even tried to pull my hair. Little children

don't know how they are supposed to act.

So I still say, optimistic beyond remedy, that your girls love you and one

day you will know it.

And get rid of those pillows in your next yard sale.

Salli

[Guest guest]

Kandie,

Thanks for understanding. I was really livid before.... I just could not

handle hearing Syd's cries.

Madison's cries are irritating but it's such that I can tune it out, sort

of, and ignore when I need to. Syd's cries are heartwrenching " I'm in pain,

I'm scared " kind of cries, and they are LOUD. The only problem is - -

whatever problem she has, I can't see... and she can't explain, and the

doctors can't pinpoint since as far as anyone can tell - she's as healthy as

can be. She will be in a perfectly terrific mood, and then start

sobbing....

Of course, when Shaun got home, she stopped for awhile. I just ran to him

to be held, and told him I was running away because " THEY " <and I pointed at

THEM> were being mean to me.

Thanks so much for your nice words - - really, it does help. Can you

believe, it STILL feels weird to have a list where I can honestly explain an

episode like this and have people understand instead of thinking " what a

strange child " .....

Grace

Re: Judging Amy

> Oh wow. What a very sad and disturbing show to catch a glimpse of while

> doing laundry. I was totally struck by your post Grace. Completely. I

> couldn't have stopped reading your post if was screaming bloody

> murder. I was stuck.

>

> It's awful. The whole thing is awful. Everything. The whole holding

> therapy, killing your child, feeling so overwhelmed when your child is

> screaming for hours or minutes on end and not feeling ANY better by your

hugs

> or kisses. It is all Terrible.

> And I am so sorry. Ugh.

>

> Just know that autism sometimes does this. There may be nothing you can

do

> to help. Knowing that, probably will (hopefully) make you feel better and

> less guilty or pressured to fix everything. Just sitting back and waiting

> the fit out and providing a safe place for fitting is all you can do.

>

> ((((Grace)))))

>

> kandie

>

> Kandie and (8 years)

> * 's website: <A

>

HREF= " http://kidsactivities.homestead.com/spage.html " >spage</A

>

> *

>

>

[Guest guest]

> This story was not as fictional as it sounds.

>

> This actually happened.

Penny, yea - I know. It happened to a child during therapy though, by the

instructors. In this episode, the mom was doing it, and it wasn't the

holding therapy that killed her, but the intentional smothering by

pillow..... so that is why I said it was fictional. The other story <the

true one that you mention> was horrifying. I won't judge someone who uses

these methods, but for crying out loud........... it doesn't make sense to

me. It just doesn't. I watched a holding therapy episode on TV once, a

long time ago, pre-autism. Even back then, it just struck me as wrong.

>

> Except the instance was with an autistic child - I'm pretty sure,

> I'll have to go back and look...it wasn't that long ago (she may have

> also had reactive attachment disorder) that's what it's called, right?

The child who was killed in real life was an autistic girl, YES.

The name of the condition on Judging Amy last night was Reactive Attachment

Disorder! Yes!!! I wrote that out, and looked at it... and thought,

" Reactive? Hmm, that doesn't look right " even though that is what I

recalled it as. I didn't know there was such a thing?

> If you've read Maurice's book, you'll see that Holding

> Therapy was/(is?) considered a therapy for autism.

One of the disturbing points about this book was when she visited the

holding therapy center? I was traumatized at that part. It bothered me

that to the end, while she doesn't credit this therapy for recovering her

children - - she doesn't discredit it either. All of us HOLD our kids, but

to do that as therapy seems to somehow devalue it. I hold my kids because I

want to or they want me to. Everything else in their lives may have

something to do with therapy - - but not that. That much is just between

us, you know? I wished Maurice had clarified that more.

I loaned my copy to . -- have you read it?

>

> Autism is biological, Grace. Like someone said, you're kids do love

> you, they do...they just do not know how to show it the way YOU want

> them to.

Yea.......... <sigh>.

So I'm trying to learn their language so I can interpret the way they show

love. Maybe a kick is the sign I've been looking for? Just kidding.

Please continue to remind me that this all begins biologically. I need to

remember that in my heart, and not just my head.

> The tantruming does get better, however; until you get to first grade

> homework, and it's so abstract there is no way your child is going

> to " get it " .

You've helped Jacqui to understand a LOT of things she didn't understand

before. It took a lot of practice, a lot of repetition, and a lot of hard

work, but you did it before, Penny -- and you will do it again.

This much, I am absolutely certain about.

Grace

>

> Penny - Who just spent too much time " adapting " Jacqui's homework in

> hopes to get her to be able to grasp it. :-(

>

>

>

>

[Guest guest]

Again, Sara.... I am just amazed by you.

My children were not like this as infants. Heck, I'd be in a straitjacket

if they had been.

I have this hard of a time dealing with these feelings of rejection or

dealing with their cries now... I can't imagine how you must have felt when

Mikey cried so much as an infant... especially since he's your first. I

recall I didn't have an inkling as to what to do with a crying baby ,even if

she only cried for seconds. Thank goodness you have Gabe as he sounds like

he makes up for a lot of what you missed out on with Mikey's infancy.

> Hopefully OT will help you. Do you want that post about all the OT things

> you can do at home?

YES!! That would be terrific. We are still due for our assessment for OT,

it hasn't begun yet. But no sense in pushing off what I can do at home, so

long as it will happen in the future. Leave the sewing parts out, though.

I love my kids, but not enough to sew LOL.

Thanks so much for understanding and also, for going through the same

crapola on a daily basis. I always resort to those sad, " I am the only mom

in the world whose child _________________ " <fill in the blank> feelings,

and then come online to tell you guys.... and there you all are, saying

" been there, done that, still doing it. " THANKS.

Grace

RE: Judging Amy

> Grace, Mikey cannot be comforted either, and has been that way since

> day...well, 4, because that's the day all the heavy-duty muscle relaxants

> worked out of his system.

>

> I know. It's awful. I know.

>

> He used to scream for 6-9 hours every single night. Absolutely

> inconsolable. For 4 months. Then he screamed 3 hours a night for another

> month.

>

> Now I realize these were/are sensory issues.

>

> It's not personal. And she can't help it.

>

> Hopefully OT will help you. Do you want that post about all the OT things

> you can do at home? I'll even make instructions for making a weighted

vest

> with minimal sewing required...I will have to actually do this first in

> order to know that my instructions are valid, but I think I have something

> worked out here.

>

> If you have to, make a safe place for her, put her in it, and ignore the

> screams. If you can, just be present. Mikey gets worse if you even LOOK

at

> him while he is tantruming, so I typically leave the room, provided he is

> safe.

>

>

>

> -Sara.

> wife to Matt

> SAHM to nurslings

> Mikey, 9/14/99, autistic spectrum? and

> Gabe, born at home 5/17/01, GERD

> http://home.earthlink.net/~thebyks

>

>

>

[Guest guest]

> Please try to remember that *something* has triggered this behavior. Have

> you tried a functional behavior analysis? It really does work, especially

> when you have no idea what is causing it.

Honestly, I haven't even heard of a " functional behavior analysis " and what

this is supposed to tell me, or where to get one, for that matter. Explain

please?

> Something is causing discomfort or unhappiness and you have to find out

what

> it is.

Well, yes... I realize that..... but she has no way of telling me what it

is. All I can do for this moment is check the regular stuff... is she sick,

fever, nose check, ear check, clothing - - which video is playing, is there

any distant sound I hear, and has something happened to one of her toys,

etc. If all of this is okay - - I can only let her be, and console her when

she is good and ready for me. By that point, she's giggling.....

> prepare him for it the next time. It's very hard to believe, but Boone

goes

> to bed with no argument simply because I show him a picture of two boys in

> bunk beds with the word night-night under it.

No, I believe you. I think I've mentioned before that my girls go to bed on

command. I say " night night " and everyone grabs their toys, and goes to bed

for a little story that nobody cares to hear but I usually tell anyhow LOL,

and our little tuck in kissing sessions, then it's lights off - - and we're

free.

> PECS has made all the

> difference in the world. I don't see how anybody can possibly say it won't

> work without even trying it.

I am really glad PECS is working so well for Boone. For right now, for my

girls though - - I just want to start off with ABA and ST and OT. If I

sense that this alone is not working -- and doesn't get their speech going,

I would try anything else out there, from signing to PECS to what have you.

For right now, I just don't want to implement something that doesn't

PERFECTLY correlate to the system that the ABA schools here use, that's all.

I'm interested in SI and AIT also - - but not going for those right now

either, for the same reasons. I just don't want to get mixed up on which

therapy accomplished what result.

[Guest guest]

> Jacquie H

> Oh, going to try a drug to see if this will help the " panic

attacks "

>

Oh Jacquie-

That sounds awful. I hope you can find something that will help them.

Penny :-(

[Guest guest]

> Honestly, I haven't even heard of a " functional behavior analysis "

and what

> this is supposed to tell me, or where to get one, for that matter.

Explain

> please?

It's an ABA tool. FAST or Functional Assessment Screening Tool, is a

questionaire. Yiou answer questions regarding a specific behavior.

The score shows whether the behavior is caused by pain attenuation,

desiring attention, sensory issues or escape. I have found it to be

accurate with most of Boone's behaviors. Knowing the cause can aid in

reducing the behaviors. if you're nice, I'll send you one.

> Well, yes... I realize that..... but she has no way of telling me

what it

> is.

This is where PECS comes in. If she could point to a card that said

earache or bellyache, eat, drink, whatever ... you wouldn't need the

FAST. If she knew what to expect, she would have fewer issues too.

> I am really glad PECS is working so well for Boone. For right now,

for my

> girls though - - I just want to start off with ABA and ST and OT.

If I

> sense that this alone is not working -- and doesn't get their

speech going,

> I would try anything else out there, from signing to PECS to what

have you.

> For right now, I just don't want to implement something that doesn't

> PERFECTLY correlate to the system that the ABA schools here use,

that's all.

LOL! Sometimes you say the silliest things! I hope you don't think

the girls will be nonverbal forever. I've never heard anyone say that

PECS didn't correlate with ABA, OT and ST. I'm not sure where you got

that idea. I didn't have the luxury of an ABA school. I had to do

something fast and with no help from anyone except from people on

lists like this. I never doubted that Boone understood words, so I

knew when I saw it, it would be a snap. He was already reading, after

all. He is so smart that when he saw the printed word and a symbol

for " table " he got it immediately. He suddenly knew what a table was

and he was overjoyed! It was a real " Helen Keller " moment. He knew

what a smile was, and he knew what hugs were and still asks for them.

And he learned hundreds of other words he didn't know before. It was

the simplest and best thing I could have done for him. We don't even

need to use them anymore. Never really did other than teaching the

words actually. I do use Boardmaker for schedule changes and new

experiences though.

ABA training is great. We use a modified ABA program to teach Boone

basic academics and compliance (haha) in the hopes that he can later

get into regular, or even advanced classes. Strict ABA involves

boring repetitious activities like color sorting, etc. He would never

go for that, besides he could do stuff like at a year old.

> I'm interested in SI and AIT also - - but not going for those right

now

> either, for the same reasons.

There's no comparison. I quit buying snake oil a long time ago.

I just don't want to get mixed up on which

> therapy accomplished what result.

I think you've been grossly misinformed about PECS. Geez, you could

start it now. Print out a few cards with familiar things and see what

happens.

What could it possibly hurt? Besides your pride that is.

Sissi