Re: Having a hard time........(long)

[Guest guest]

Don't give up on her yet. I don't know how old Ebony is, but sometimes these

kids amaze us with what they know and aren't able to express -- or just

don't feel a need to share with others -- yet.

Sissi

Kids' Page

http://www.isoa.net/~nitetrax/dillon.htm

Boone's Art

http://www.isoa.net/~nitetrax/bart.htm

[Guest guest]

Tamara

Firstly, this isn't long...did you read my recent epic tale!

Secondly, I relate to this part of your post all too well...

>>>It's funny but all along I've blocked out the

possibility that she wouldn't be fairly normal (with

some asd stuff as residual, of course) as a school age

child. I thought if I do A, and B, and C, then this

will happen.<<<

I think I still feel this way at times but I know I felt completely this way

up until just recently...consciously I accepted Jay's autism, I believed it

was ok, I'd cope, I'd do what was needed to help him achieve the best

possible outcome...

Subconsciously I believed that if I did all this wonderful stuff I would be

sending him off to school as a(n - almost) normal child...near enough at

least but I watch him now and see the autism even more clearly than I used

to. I am convinced he is extremely intelligent and will have very little

trouble academically (he picks those sort of things up pretty easily and has

a limitless memory) but I'm starting to realise, and reluctantly accept,

that his 'strangeness' will remain with him and will always be a hindrance

to his fitting in...

(inAus)

[Guest guest]

{{{{{Tamara}}}}}

I'm sorry. I don't know what else to say.

-Sara.

[Guest guest]

> > It's funny but all along I've blocked out the

> possibility that she wouldn't be fairly normal (with

> some asd stuff as residual, of course) as a school age

> child. I thought if I do A, and B, and C, then this

> will happen. Well, I did A, B, and C, and it is not

> helping her. I don't know what D is and I don't know

> if I have enough energy to do it.>>

Tamara,

Since my first post this morning actually went through instantly, I'm

going to try to post to you again this morning...we'll see what

happens. I know that you are dealing with the frustration of " what

next...what do I do now? " ...it's just so hard when the stuff that's

*supposed* to work doesn't. So many kids with autism do so well...why

isn't mine one of those? Boy, have I been there...

I remember when was first diagnosed...as dyspraxic,

initially...I figured we'd do speech, we'd get better. Life would

not be significantly impacted by this. My husband has several

nieces/nephews who went through speech in elementary school...they

were all in college studying pre-med or pre-law, so it seemed like no

big deal. We had no idea then how complex his problems were or what

was in the future for us.

I still look back at all that has happened, struggle with why this or

that didn't work for him...wonder which part of it is my fault...and

think of how I would do it differently if I had known this or

that...20/20 hindsight, you know? Because of his regressions, I was

dealing with a lot of guilt...why hadn't I seen this coming...why

hadn't I realized how serious it was before he fell apart? You can

really do a job on yourself if you get into this mode...if you let

yourself believe that *you* are ultimately responsible for " fixing "

your kid...and that it's somehow your fault if plan A, B, and C don't

work. I watched kids ' age and younger coming and going from

the same therapists, getting better and better...kids who looked way

worse initially than he did. They were looking more and

more " normal " ...he was looking more and more " autistic " . Rats.

I remember sitting in the psychologist's office ('

psychologist), crying and talking about how differently I would have

done things had I known how ' life would progress, and she said

something that really helped me...in a nutshell, she told me that

after 20+ yrs of working with kids with autism/PDD, she feels

that " they do what they're going to do, no matter what WE do " . Now,

she wasn't saying that early intervention or aggressive therapy

aren't going to help kids...she just meant that we have to accept

that they are who they are, and that we aren't going to change the

basics of that. It's a matter of time revealing to us what the

specific issues are...not of working our way through the

perfect " plan of intervention " for kids with this or that

disability. We learned over time that was not the " typical "

kid with sensory issues...that his struggles are massive...and we

have to hit those issues one by one if we are going to help him. But

I can't go around kicking myself for not knowing from the beginning

something that even the " experts " missed.

> I feel like....hopeless I guess. Like I have to

> resign myself to this being Ebony's life. Forever. >>

My dad always says, " It is what it is " . He's right...we have to look

at things honestly. BUT, that doesn't mean giving up or " resigning "

ourselves to anything. So much is changing for kids with serious

challenges, Tamara. Even for kids whose disabilities are incredibly

complex, there are options that are helping these kids to make

significant progress. Medical progress, progress in various

therapies...people are making major headway into figuring out

what " autism " consists of, and finding answers.

I went through a time when all I could see for ' adult years

was an institution somewhere...it was horrid. Nothing we did was

working; nothing we tried made any real difference. But over time, I

am starting to find things that DO work for him...I am absolutely

convinced that there is an answer for every kid out there...it's a

matter of finding what works for the individual. And you do that not

by searching the world over for " the " program that will work, or by

doing what works for everyone else, but by accepting where they

really are, what they can and cannot do, and working with the

strengths you find. Nothing grand and glorious...putting together a

puzzle and seeing what the real picture is, then letting that picture

guide what you do.

has really had a tough time with communication, too, and that

is one of the most frustrating things for a child to endure, I

think. That's what causes so many unfortunate behaviors...here I am,

living in a terrifying world that makes absolutely no sense to me,

trying to " get " what all these people are wanting from me, needing to

say " I can't DO this! " and not being able to...what do you do when

every other method of getting your thoughts across? Well, maybe you

bite someone to get their attention...maybe you slam your head into

the wall...maybe you just check out. Communication is real

power...if you can't communicate, you have no power.

couldn't understand the symbolic nature of language...that one

thing can stand for another. That's a huge barrier in learning to use

ANY system of communication. He has memory storage problems...give

him more than three things, and he starts losing track of them. He

can't motor plan worth beans...signing was a joke. But we discovered

that if we gave him just one or two gestures...modified into

something he could do...his frustration level went WAY down. You

have to learn what his gestures mean, but once you know his system,

he has some power. Right now, he has a grand total of 3 gestures---

" come with me " , " paper " , and " eat " . It has made a world of

difference for him---he has some power, finally. And you know what?

He's starting to try to talk. I was listening to his gibberish

yesterday, and realized that it ISN'T gibberish...it's dyspraxic

words...he's talking. (Now if we can just figure out what he is

SAYING...)

You have to look at the medical pieces first, obviously. There is a

lot that can really help in terms of balancing brain chemistry and

regulating body rhythms, but it takes a bit of tinkering to find just

the right mix of things that will get you there. Then you look at

one piece at a time...what is the FIRST thing this child needs to

function better? Maybe that will be a differently structured

environment, maybe it will be a way to communicate at least a bit,

maybe it will be some specific type of sensory therapy. You'll find

it...just take your time. There is more and more evidence that the

brain remains able to learn and develop throughout life...the time is

there.

She's so young, and this is a very difficult time. You'll get there,

honest.

Raena

[Guest guest]

Tamara,

Even though is able to communicate, I understand what you're feeling.

When 's progress took off about a year ago, I started thinking, " hey,

he's going to be indistinguishable from his peers!!! " I felt like it he

kept up the way he was going, he would have no problem fitting in and maybe

autism would just be something smaller, like a mild learning disability.

Don't ask me how I came up with THAT brilliant idea. But people kept

telling me he was so high-functioning that I just had free reign to get my

hopes waaaaay up...

But it is now painfully obvious that high-functioning autistic is still

nowhere NEAR 'indistinguishable'. He won't 'fit in'. Not now, not ever.

When I realised he was high-functioning, I really did have this fantasy of

him fitting in, of overcoming all of it. But he won't. He can't. It's

just not going to happen.

And so it's like going through the whole grief process again.

I feel for you, Tamara.

Jacquie

[Guest guest]

Thanks, Raena. I hear what you are saying. I just

need to get to that place that I can be comfortable

with the possibility that she may not ever progress to

where " I " wanted her to be. It will come...I hope.

It just about makes me cry when I can't get her to say

something that a couple of weeks ago she was saying

fine. Frustrating.

Thanks for the support. I am hoping to get some new

ideas from the conference too.

Tamara

--- rgr4us wrote:

>

> > > It's funny but all along I've blocked out the

> > possibility that she wouldn't be fairly normal

> (with

> > some asd stuff as residual, of course) as a school

> age

> > child. I thought if I do A, and B, and C, then

> this

> > will happen. Well, I did A, B, and C, and it is

> not

> > helping her. I don't know what D is and I don't

> know

> > if I have enough energy to do it.>>

>

>

> Tamara,

>

> Since my first post this morning actually went

> through instantly, I'm

> going to try to post to you again this

> morning...we'll see what

> happens. I know that you are dealing with the

> frustration of " what

> next...what do I do now? " ...it's just so hard when

> the stuff that's

> *supposed* to work doesn't. So many kids with autism

> do so well...why

> isn't mine one of those? Boy, have I been there...

>

> I remember when was first diagnosed...as

> dyspraxic,

> initially...I figured we'd do speech, we'd get

> better. Life would

> not be significantly impacted by this. My husband

> has several

> nieces/nephews who went through speech in elementary

> school...they

> were all in college studying pre-med or pre-law, so

> it seemed like no

> big deal. We had no idea then how complex his

> problems were or what

> was in the future for us.

>

> I still look back at all that has happened, struggle

> with why this or

> that didn't work for him...wonder which part of it

> is my fault...and

> think of how I would do it differently if I had

> known this or

> that...20/20 hindsight, you know? Because of his

> regressions, I was

> dealing with a lot of guilt...why hadn't I seen this

> coming...why

> hadn't I realized how serious it was before he fell

> apart? You can

> really do a job on yourself if you get into this

> mode...if you let

> yourself believe that *you* are ultimately

> responsible for " fixing "

> your kid...and that it's somehow your fault if plan

> A, B, and C don't

> work. I watched kids ' age and younger coming

> and going from

> the same therapists, getting better and

> better...kids who looked way

> worse initially than he did. They were looking more

> and

> more " normal " ...he was looking more and more

> " autistic " . Rats.

>

> I remember sitting in the psychologist's office

> ('

> psychologist), crying and talking about how

> differently I would have

> done things had I known how ' life would

> progress, and she said

> something that really helped me...in a nutshell, she

> told me that

> after 20+ yrs of working with kids with autism/PDD,

> she feels

> that " they do what they're going to do, no matter

> what WE do " . Now,

> she wasn't saying that early intervention or

> aggressive therapy

> aren't going to help kids...she just meant that we

> have to accept

> that they are who they are, and that we aren't going

> to change the

> basics of that. It's a matter of time revealing to

> us what the

> specific issues are...not of working our way through

> the

> perfect " plan of intervention " for kids with this or

> that

> disability. We learned over time that was

> not the " typical "

> kid with sensory issues...that his struggles are

> massive...and we

> have to hit those issues one by one if we are going

> to help him. But

> I can't go around kicking myself for not knowing

> from the beginning

> something that even the " experts " missed.

>

> > I feel like....hopeless I guess. Like I have to

> > resign myself to this being Ebony's life.

> Forever. >>

>

> My dad always says, " It is what it is " . He's

> right...we have to look

> at things honestly. BUT, that doesn't mean giving up

> or " resigning "

> ourselves to anything. So much is changing for kids

> with serious

> challenges, Tamara. Even for kids whose

> disabilities are incredibly

> complex, there are options that are helping these

> kids to make

> significant progress. Medical progress, progress in

> various

> therapies...people are making major headway into

> figuring out

> what " autism " consists of, and finding answers.

>

> I went through a time when all I could see for

> ' adult years

> was an institution somewhere...it was horrid.

> Nothing we did was

> working; nothing we tried made any real difference.

> But over time, I

> am starting to find things that DO work for him...I

> am absolutely

> convinced that there is an answer for every kid out

> there...it's a

> matter of finding what works for the individual.

> And you do that not

> by searching the world over for " the " program that

> will work, or by

> doing what works for everyone else, but by accepting

> where they

> really are, what they can and cannot do, and working

> with the

> strengths you find. Nothing grand and

> glorious...putting together a

> puzzle and seeing what the real picture is, then

> letting that picture

> guide what you do.

>

> has really had a tough time with

> communication, too, and that

> is one of the most frustrating things for a child to

> endure, I

> think. That's what causes so many unfortunate

> behaviors...here I am,

> living in a terrifying world that makes absolutely

> no sense to me,

> trying to " get " what all these people are wanting

> from me, needing to

> say " I can't DO this! " and not being able to...what

> do you do when

> every other method of getting your thoughts across?

> Well, maybe you

> bite someone to get their attention...maybe you slam

> your head into

> the wall...maybe you just check out. Communication

> is real

> power...if you can't communicate, you have no power.

>

> couldn't understand the symbolic nature of

> language...that one

> thing can stand for another. That's a huge barrier

> in learning to use

> ANY system of communication. He has memory storage

> problems...give

> him more than three things, and he starts losing

> track of them. He

> can't motor plan worth beans...signing was a joke.

> But we discovered

> that if we gave him just one or two

> gestures...modified into

> something he could do...his frustration level went

> WAY down. You

> have to learn what his gestures mean, but once you

> know his system,

> he has some power. Right now, he has a grand total

> of 3 gestures---

> " come with me " , " paper " , and " eat " . It has made a

> world of

> difference for him---he has some power, finally.

> And you know what?

> He's starting to try to talk. I was listening to

> his gibberish

> yesterday, and realized that it ISN'T

> gibberish...it's dyspraxic

> words...he's talking. (Now if we can just figure

> out what he is

> SAYING...)

>

> You have to look at the medical pieces first,

> obviously.

=== message truncated ===

__________________________________________________

[Guest guest]

Thanks, Jacquie. I understand what you are saying.

Yet, I am wish Ebony would be able to be at that

level, even. But if she were, I would be wanting more

than that. So I guess I just need to become more

comfortable with a more realistic outcome for Ebony.

Ugghh.

Tamara

--- The Hunny Family wrote:

>

> Tamara,

>

> Even though is able to communicate, I

> understand what you're feeling.

>

> When 's progress took off about a year ago, I

> started thinking, " hey,

> he's going to be indistinguishable from his

> peers!!! " I felt like it he

> kept up the way he was going, he would have no

> problem fitting in and maybe

> autism would just be something smaller, like a mild

> learning disability.

> Don't ask me how I came up with THAT brilliant idea.

> But people kept

> telling me he was so high-functioning that I just

> had free reign to get my

> hopes waaaaay up...

>

> But it is now painfully obvious that

> high-functioning autistic is still

> nowhere NEAR 'indistinguishable'. He won't 'fit

> in'. Not now, not ever.

> When I realised he was high-functioning, I really

> did have this fantasy of

> him fitting in, of overcoming all of it. But he

> won't. He can't. It's

> just not going to happen.

>

> And so it's like going through the whole grief

> process again.

>

> I feel for you, Tamara.

>

> Jacquie

>

>

__________________________________________________

[Guest guest]

Thanks, Sara. I appreciate everybody just listening.

It helps.

Tamara

--- The Byks wrote:

> {{{{{Tamara}}}}}

>

> I'm sorry. I don't know what else to say.

>

> -Sara.

>

__________________________________________________

[Guest guest]

Thanks, . I guess I thought it was long cause it

took me soo long to compose my thoughts into a

post....LOL

I know many people on this list understand where I am

at right now and that helps. I just wish that Ebony

was able to do school age academics or any even. I

think I could deal with the social problems if there

was hope that she would be able to support herself as

an adult and have a job. I just don't see that

happening right now. I don't know. I just get the

feeling that the psychologist and psychiatrist both

don't feel that Ebony will be successful in learning

to communicate. It is very disheartening.

Thanks for listening,

Tamara

--- wrote:

> Tamara

> Firstly, this isn't long...did you read my recent

> epic tale!

> Secondly, I relate to this part of your post all too

> well...

>

> >>>It's funny but all along I've blocked out the

> possibility that she wouldn't be fairly normal (with

> some asd stuff as residual, of course) as a school

> age

> child. I thought if I do A, and B, and C, then this

> will happen.<<<

>

> I think I still feel this way at times but I know I

> felt completely this way

> up until just recently...consciously I accepted

> Jay's autism, I believed it

> was ok, I'd cope, I'd do what was needed to help him

> achieve the best

> possible outcome...

>

> Subconsciously I believed that if I did all this

> wonderful stuff I would be

> sending him off to school as a(n - almost) normal

> child...near enough at

> least but I watch him now and see the autism even

> more clearly than I used

> to. I am convinced he is extremely intelligent and

> will have very little

> trouble academically (he picks those sort of things

> up pretty easily and has

> a limitless memory) but I'm starting to realise, and

> reluctantly accept,

> that his 'strangeness' will remain with him and will

> always be a hindrance

> to his fitting in...

>

> (inAus)

>

>

__________________________________________________

[Guest guest]

> I just get the

> feeling that the psychologist and psychiatrist both

> don't feel that Ebony will be successful in learning

> to communicate. It is very disheartening.>>

Tamara,

Don't mean to challenge your psycho folks, but I just can't see it

that way at all. I think that even kids with very severe sensory

dysfunction and communication challenges CAN AND DO communicate---we

just don't " get it " , because we are only thinking in traditional

terms. It is mainly a matter of learning THEIR method

of " talking " ...adjusting to what they can do, and taking the time to

find out how to " speak " their language.

We think that talking, signing, and handing people little cards are

the only way to get one's point across...but if those don't work, ya

gotta find out what IS working. That's a matter of paying attention

to what a child is telling you through their actions, facial

expressions, vocalizations, movements and so on. doesn't talk

much in words that we can understand, but he sure can get his point

across...I would be willing to bet that Ebony will, too, once she

discovers that you are willing to go where she is.

The first step in communication is seeing the value in connecting to

others...learning that people are safe. had no need to

communicate with a world that scared him spitless...once that

changed, he had a lot to " say " . I think that creates visual

representations of what he wants/needs...he pushes your hand at a

sack of oranges, tosses a carton of juice over the back of the couch;

he has even developed a system where he holds your hand and walks you

to where what he needs is, with specific signals

for " stop " , " go " , " turn " , " up " , " down " , and so on...once I started

looking at those things as actual communication, he started trying

harder to tell me things.

Look at what Ebony is using for communication...there is something, I

promise, because EVERYONE NEEDS TO COMMUNICATE, and in the absence of

some medical process or significant sensory defensiveness that

prevents it, they will--one way or another. You are the most likely

person for her to try to " converse " with, because as her mom, you are

the person she probably trusts most.

Raena

[Guest guest]

Tamara,

You KNOW I understand your concerns.

Of course, I can't tell you if Ebony will ever talk, or how " normal " she

will be, what grade she will start mainstreaming, or whatever else that

worries your heart.

But I can tell you that Ebony DOES communicate, and her best method is YOU.

Having nonverbal children for four years has taught me something. I know my

children, personally, BETTER than those with speaking children. I've had to

get to know my children better. Kids are not just kids - - - Madison is

Madison, completely unique. Sydney is a totally different child, again,

unique. Same with Ebony..... totally unique. When explaining my child's

actions, behaviors, motions - - I have to think like her. I have to know

this child EXTREMELY well to think like her.... to realize what it is she IS

communicating. I can derive what she wants MOST of the time because she

DOES communicate it to me.

Will these children ever be in regular school with regular friends and

regular lives? I don't know.

I hope, like everyone else, but images don't pop up in my mind. I don't

assume that " okayness " exists at the end of this journey. If I thought

that - it wouldn't be so daunting and depressing. I've said time and time

again, that this wouldn't be so bad if it came with an expiration date, even

if that date was 10 years, 20 years away. Waiting, I can do. But there is

no date. They say forever.... a lifetime. Most of the time, we feel like

it ends when we end.... and that the rest of our lives on this earth will be

filled with all of these worries... and so much pain.

BUT - what has worked for me is being able to sit down, breathe, and imagine

one thing.

Imagine if today were the last day of your life and you knew it. Imagine

there is no tomorrow. Imagine that you know that you won't open your eyes

tomorrow to see that child's expressive eyes..... funny behavior.... wild,

cute, and disastrous antics..... Imagine that you leave her, the baby, the

husband.... leave it all behind and you only have so many hours left to

enjoy it.....

And suddenly, it doesn't matter one damn bit if she talks or not.

It doesn't matter whether you have crap on your walls.

It doesn't matter.

Suddenly, all that matters is that you lived your life, and knew her well

enough to communicate for her. Suddenly, you're so proud that you were the

kind of mom who made the initiative to get to know your child. That is a

feat many, many parents don't accomplish in a whole lifetime. Suddenly,

it's more important that you were a better mom to all your kids because of

Ebony and all she has taught you. Suddenly, you realize your life HAS been

full, and so much of it was because this one child taught you how to squeeze

out as much as possible from your life, because she made you have to do so

to survive.

Suddenly, ABA are just three letters..... suddenly, talking seems like such

a small, meaningless part of life. Words suddenly carry less meaning.....

your heart carried all the meaning it had to, as does Ebony's.

Suddenly - the future doesn't matter. Suddenly, the only thing that is

worth anything is making the most of each day, hour, minute, heck even

second.

Cause that is how death comes for you, or her, or me. Suddenly.

So if at all possible - STOP worrying. I know firsthand that it's easier

than done, and I know that this is a morbid way to picture things, but it

works. You try, you imagine, and suddenly - - - you realize that despite

mainstreaming worries, speech problems, behavior issues, and what have

you - - - - suddenly, you realize things will be okay in spite of it all.

Oh, and one more thing: I LOVE YOU!!! ;o)

Grace

Having a hard time........(long)

> I have to say that I am really having a hard time

> coming to terms with the fact that Ebony may not be

> able to be mainstreamed. Basically, I just got two

> professionals telling me that Ebony is not progressing

> in her therapy as she should be.

> It's funny but all along I've blocked out the

> possibility that she wouldn't be fairly normal (with

> some asd stuff as residual, of course) as a school age

> child. I thought if I do A, and B, and C, then this

> will happen. Well, I did A, B, and C, and it is not

> helping her. I don't know what D is and I don't know

> if I have enough energy to do it.

> I feel like....hopeless I guess. Like I have to

> resign myself to this being Ebony's life. Forever.

> But I am still struggling with it. I thought I had

> resolved this, but what I had resolved to was just a

> modification of a normal child's life. This is more

> than a modification. I can't accept that she will not

> be able to function in a school setting. Reading,

> doing math, history, etc. But if she can't

> communicate, she can't do any of that. And with all

> that we have tried....it still remains that she cannot

> communicate.

> Sorry this is so rambling and long, but I thought that

> by writing this I would be able to understand my own

> feeling better.

> Thanks for listening......

> Tamara

>

>

> __________________________________________________

>

[Guest guest]

> terms. It is mainly a matter of learning THEIR method

> of " talking " ...adjusting to what they can do, and taking the time to

> find out how to " speak " their language. (snip)

> Look at what Ebony is using for communication...there is something, I

> promise, because EVERYONE NEEDS TO COMMUNICATE, and in the absence of

> some medical process or significant sensory defensiveness that

> prevents it, they will--one way or another.

Well dang.

Raena said it all LOL.

Yes, what she said.

Grace

[Guest guest]

In a message dated 3/26/02 1:43:28 PM Pacific Standard Time,

tamara_b73@... writes:

<< Was talking or at least

understanding what was said before his fifth birthday?>>

Yes, he was talking in very short pre-made phrases borrowed from

tv/video/computer. Echolalia was his first language....he still uses

echolalia for his common words/phrases.

He understood some of what was said but not all words. Probably 1/2 at that

age.

But I think if he were evaluated they probably would have called him

non-verbal at that age.

kandie

[Guest guest]

Sue, I'm not saying that I will stop trying to teach

her, just that my hope of it clicking is greatly

diminished. We have been doing that for over two

years and nothing. We will keep doing it, but I don't

think that it is going to work. Or if it does, that

anything I do is going to change that.

Thanks,

Tamara

--- smgaska wrote:

> Tamara,

> I don't know that I'd go to that place yet! There's

> also the possibility

> that once you learn how she communicates with you,

> you will be able to get

> her to understand that our making noise is how we

> communicate to others. If

> she takes you to something she wants, sign the

> things name and say it to

> her. Maybe it will eventually click. Maybe not

> right away, but I certainly

> wouldn't give up on teaching her!

> Sue

>

> Re: Re: Having a hard

> time........(long)

>

>

> > Thanks, Raena. I hear what you are saying. I

> just

> > need to get to that place that I can be

> comfortable

> > with the possibility that she may not ever

> progress to

> > where " I " wanted her to be. It will come...I

> hope.

> > It just about makes me cry when I can't get her to

> say

> > something that a couple of weeks ago she was

> saying

> > fine. Frustrating.

> > Thanks for the support. I am hoping to get some

> new

> > ideas from the conference too.

> > Tamara

> >

> > --- rgr4us wrote:

> > >

> > > > > It's funny but all along I've blocked out

> the

> > > > possibility that she wouldn't be fairly normal

> > > (with

> > > > some asd stuff as residual, of course) as a

> school

> > > age

> > > > child. I thought if I do A, and B, and C,

> then

> > > this

> > > > will happen. Well, I did A, B, and C, and it

> is

> > > not

> > > > helping her. I don't know what D is and I

> don't

> > > know

> > > > if I have enough energy to do it.>>

> > >

> > >

> > > Tamara,

> > >

> > > Since my first post this morning actually went

> > > through instantly, I'm

> > > going to try to post to you again this

> > > morning...we'll see what

> > > happens. I know that you are dealing with the

> > > frustration of " what

> > > next...what do I do now? " ...it's just so hard

> when

> > > the stuff that's

> > > *supposed* to work doesn't. So many kids with

> autism

> > > do so well...why

> > > isn't mine one of those? Boy, have I been

> there...

> > >

> > > I remember when was first diagnosed...as

> > > dyspraxic,

> > > initially...I figured we'd do speech, we'd get

> > > better. Life would

> > > not be significantly impacted by this. My

> husband

> > > has several

> > > nieces/nephews who went through speech in

> elementary

> > > school...they

> > > were all in college studying pre-med or pre-law,

> so

> > > it seemed like no

> > > big deal. We had no idea then how complex his

> > > problems were or what

> > > was in the future for us.

> > >

> > > I still look back at all that has happened,

> struggle

> > > with why this or

> > > that didn't work for him...wonder which part of

> it

> > > is my fault...and

> > > think of how I would do it differently if I had

> > > known this or

> > > that...20/20 hindsight, you know? Because of

> his

> > > regressions, I was

> > > dealing with a lot of guilt...why hadn't I seen

> this

> > > coming...why

> > > hadn't I realized how serious it was before he

> fell

> > > apart? You can

> > > really do a job on yourself if you get into this

> > > mode...if you let

> > > yourself believe that *you* are ultimately

> > > responsible for " fixing "

> > > your kid...and that it's somehow your fault if

> plan

> > > A, B, and C don't

> > > work. I watched kids ' age and younger

> coming

> > > and going from

> > > the same therapists, getting better and

> > > better...kids who looked way

> > > worse initially than he did. They were looking

> more

> > > and

> > > more " normal " ...he was looking more and more

> > > " autistic " . Rats.

> > >

> > > I remember sitting in the psychologist's office

> > > ('

> > > psychologist), crying and talking about how

> > > differently I would have

> > > done things had I known how ' life would

> > > progress, and she said

> > > something that really helped me...in a nutshell,

> she

> > > told me that

> > > after 20+ yrs of working with kids with

> autism/PDD,

> > > she feels

> > > that " they do what they're going to do, no

> matter

> > > what WE do " . Now,

> > > she wasn't saying that early intervention or

> > > aggressive therapy

> > > aren't going to help kids...she just meant that

> we

> > > have to accept

> > > that they are who they are, and that we aren't

> going

> > > to change the

> > > basics of that. It's a matter of time revealing

> to

> > > us what the

> > > specific issues are...not of working our way

> through

> > > the

> > > perfect " plan of intervention " for kids with

> this or

> > > that

> > > disability. We learned over time that

> was

> > > not the " typical "

> > > kid with sensory issues...that his struggles are

> > > massive...and we

> > > have to hit those issues one by one if we are

> going

> > > to help him. But

> > > I can't go around kicking myself for not knowing

> > > from the beginning

> > > something that even the " experts " missed.

> > >

> > > > I feel like....hopeless I guess. Like I have

> to

> > > > resign myself to this being Ebony's life.

> > > Forever. >>

> > >

> > > My dad always says, " It is what it is " . He's

> > > right...we have to look

> > > at things honestly. BUT, that doesn't mean

> giving up

> > > or " resigning "

> > > ourselves to anything. So much is changing for

> kids

> > > with serious

> > > challenges, Tamara. Even for kids whose

> > > disabilities are incredibly

> > > complex, there are options that are helping

> these

> > > kids to make

> > > significant progress. Medical progress, progress

> in

> > > various

> > > therapies...people are making major headway into

> > > figuring out

> > > what " autism " consists of, and finding answers.

> > >

>

=== message truncated ===

__________________________________________________

[Guest guest]

Raena, you are right of course. And Ebony and I do

communicate. I know what she wants 95% of the time

and how she is feeeling most of the time. I guess

what I was referring to was more functional language

that is universal. Something to help her in school,

etc.

But you are right. She leads me to what she wants.

It is pretty hard to mistake someone handing you a cup

and leading you to the refridgerator.... they want a

drink...duh! Or bringing me the box of crackers and

placing my hand on the top of the box. Or leading me

to a door so that I will open it. She communicates

that way very well.

If I understood your post, you think that this type

of communication will develop into language. I hope

so. But she has been doing this for years. And still,

she seems to have very little receptive or expressive

language skills. It's like she hears you but doesn't

apply any meaning to the sounds.

Anyway, thank you for your posting. As usual, it was

wonderful. I very much hope you are right and she

does learn to talk eventually.

Tamara

--- rgr4us wrote:

>

> > I just get the

> > feeling that the psychologist and psychiatrist

> both

> > don't feel that Ebony will be successful in

> learning

> > to communicate. It is very disheartening.>>

>

> Tamara,

>

> Don't mean to challenge your psycho folks, but I

> just can't see it

> that way at all. I think that even kids with very

> severe sensory

> dysfunction and communication challenges CAN AND DO

> communicate---we

> just don't " get it " , because we are only thinking in

> traditional

> terms. It is mainly a matter of learning THEIR

> method

> of " talking " ...adjusting to what they can do, and

> taking the time to

> find out how to " speak " their language.

>

> We think that talking, signing, and handing people

> little cards are

> the only way to get one's point across...but if

> those don't work, ya

> gotta find out what IS working. That's a matter of

> paying attention

> to what a child is telling you through their

> actions, facial

> expressions, vocalizations, movements and so on.

> doesn't talk

> much in words that we can understand, but he sure

> can get his point

> across...I would be willing to bet that Ebony will,

> too, once she

> discovers that you are willing to go where she is.

>

> The first step in communication is seeing the value

> in connecting to

> others...learning that people are safe. had

> no need to

> communicate with a world that scared him

> spitless...once that

> changed, he had a lot to " say " . I think that

> creates visual

> representations of what he wants/needs...he pushes

> your hand at a

> sack of oranges, tosses a carton of juice over the

> back of the couch;

> he has even developed a system where he holds your

> hand and walks you

> to where what he needs is, with specific signals

> for " stop " , " go " , " turn " , " up " , " down " , and so

> on...once I started

> looking at those things as actual communication, he

> started trying

> harder to tell me things.

>

> Look at what Ebony is using for

> communication...there is something, I

> promise, because EVERYONE NEEDS TO COMMUNICATE, and

> in the absence of

> some medical process or significant sensory

> defensiveness that

> prevents it, they will--one way or another. You are

> the most likely

> person for her to try to " converse " with, because as

> her mom, you are

> the person she probably trusts most.

>

> Raena

>

>

__________________________________________________

[Guest guest]

Kandie: Thanks. Was talking or at least

understanding what was said before his fifth birthday?

Just curious. I would love a story about a child who

did not talk or understand at all until older and then

suddenly started and got caught up. I hope the next

year brings progress for us.

Thank you!!!!

Tamara

--- kandiedem@... wrote:

> Tamara,

> For what it's worth, was horrid all the way

> up until his 5th year.

> He showed very little progress up until that time.

> Then little by little, he

> made progress.

> Really!

> Now at 9 years old he is doing wonderfully. Still

> autistic, but progressing

> none the less. ;-)

>

> Hang in there and take care. Not all kids are on

> the same schedule. Even

> autistic ones vary alot!

>

> :-)

> Kandie

>

> Kandie and (9 years)

> * 's website: <A

>

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

>

> *

>

__________________________________________________

[Guest guest]

Thanks Jacquie. It is hard to know what is realistic.

But I guess I would rather prepare myself for a low

end prospect and end up with something more in the

middle than set myself up for more disappointment by

hoping for more than is probably possible.

Make sense?

I think this is something that I am just going to have

to work through.

Thank you so much for listening and being there.

I can't wait till PA.

Tamara

--- The Hunny Family wrote:

>

>

> > Thanks, Jacquie. I understand what you are

> saying.

> > Yet, I am wish Ebony would be able to be at that

> > level, even.

>

> Yeah, I know. (((hugs))) That's why I made sure to

> point out that I know

> I'm talking from a different place.

>

> I can't imagine having at this age and

> wondering if he would start

> communicating. My heart really goes out to you.

> That's why I point out

> the*other* ways I can empathize -- the always

> wondering, and hoping, and

> sometimes being utterly disappointed. :-(

> Unfortunately, that's there at

> any level of functioning.

>

>

> But if she were, I would be wanting more

> > than that.

>

> That's true. But you know, I think some of us have

> more things they need to

> wish for than others.

>

>

> So I guess I just need to become more

> > comfortable with a more realistic outcome for

> Ebony.

> > Ugghh.

>

> But it's so hard to KNOW what's realistic, isn't

> it??? Even *that* seems to

> change from day to day. Some days, I really think

> I'm being realistic when

> I hope that he'll have a job and a home of his own.

> Then, other days,

> realistic seems to be shooting for assisted living

> and a job shadow. On the

> worst days, a realistic future is living with

> us, dependant on us, and

> going to adult day programs until we die and someone

> else takes him in...

>

> The key to surviving, for me, is to just look to

> tomorrow and hope like hell

> that the future takes care of itself.

>

> <sigh>

>

> Jacquie

>

>

>

__________________________________________________

[Guest guest]

Tamara,

The second round of grief. I know it well. I'm sorry that you are

feeling so low right now. Just remember that the future is unknown. Even

if Ebony isn't mainstreamed, she can still have a very happy, fulfilling

school career. The most important thing?---your love for her. That's all

she really needs. Hope you are feeling a bit better today.

Amy H--in Michigan

Kepler 4 1/2 ASD and Bethany 6 NT

" Harmony breeds ignorance. It is the dissonant chords of life that lead us

to wisdom. " ~me

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Tamara, Ebony might still be mainstreamed, just not yet. You never know what

our kids will do or when they will do it. And if she is never mainstreamed,

that doesn't matter because she is still your Ebony and you love her.

Janae

, 9, ADD

Jake, 6, autism

[Guest guest]

Tamara,

I don't know that I'd go to that place yet! There's also the possibility

that once you learn how she communicates with you, you will be able to get

her to understand that our making noise is how we communicate to others. If

she takes you to something she wants, sign the things name and say it to

her. Maybe it will eventually click. Maybe not right away, but I certainly

wouldn't give up on teaching her!

Sue

Re: Re: Having a hard time........(long)

> Thanks, Raena. I hear what you are saying. I just

> need to get to that place that I can be comfortable

> with the possibility that she may not ever progress to

> where " I " wanted her to be. It will come...I hope.

> It just about makes me cry when I can't get her to say

> something that a couple of weeks ago she was saying

> fine. Frustrating.

> Thanks for the support. I am hoping to get some new

> ideas from the conference too.

> Tamara

>

> --- rgr4us wrote:

> >

> > > > It's funny but all along I've blocked out the

> > > possibility that she wouldn't be fairly normal

> > (with

> > > some asd stuff as residual, of course) as a school

> > age

> > > child. I thought if I do A, and B, and C, then

> > this

> > > will happen. Well, I did A, B, and C, and it is

> > not

> > > helping her. I don't know what D is and I don't

> > know

> > > if I have enough energy to do it.>>

> >

> >

> > Tamara,

> >

> > Since my first post this morning actually went

> > through instantly, I'm

> > going to try to post to you again this

> > morning...we'll see what

> > happens. I know that you are dealing with the

> > frustration of " what

> > next...what do I do now? " ...it's just so hard when

> > the stuff that's

> > *supposed* to work doesn't. So many kids with autism

> > do so well...why

> > isn't mine one of those? Boy, have I been there...

> >

> > I remember when was first diagnosed...as

> > dyspraxic,

> > initially...I figured we'd do speech, we'd get

> > better. Life would

> > not be significantly impacted by this. My husband

> > has several

> > nieces/nephews who went through speech in elementary

> > school...they

> > were all in college studying pre-med or pre-law, so

> > it seemed like no

> > big deal. We had no idea then how complex his

> > problems were or what

> > was in the future for us.

> >

> > I still look back at all that has happened, struggle

> > with why this or

> > that didn't work for him...wonder which part of it

> > is my fault...and

> > think of how I would do it differently if I had

> > known this or

> > that...20/20 hindsight, you know? Because of his

> > regressions, I was

> > dealing with a lot of guilt...why hadn't I seen this

> > coming...why

> > hadn't I realized how serious it was before he fell

> > apart? You can

> > really do a job on yourself if you get into this

> > mode...if you let

> > yourself believe that *you* are ultimately

> > responsible for " fixing "

> > your kid...and that it's somehow your fault if plan

> > A, B, and C don't

> > work. I watched kids ' age and younger coming

> > and going from

> > the same therapists, getting better and

> > better...kids who looked way

> > worse initially than he did. They were looking more

> > and

> > more " normal " ...he was looking more and more

> > " autistic " . Rats.

> >

> > I remember sitting in the psychologist's office

> > ('

> > psychologist), crying and talking about how

> > differently I would have

> > done things had I known how ' life would

> > progress, and she said

> > something that really helped me...in a nutshell, she

> > told me that

> > after 20+ yrs of working with kids with autism/PDD,

> > she feels

> > that " they do what they're going to do, no matter

> > what WE do " . Now,

> > she wasn't saying that early intervention or

> > aggressive therapy

> > aren't going to help kids...she just meant that we

> > have to accept

> > that they are who they are, and that we aren't going

> > to change the

> > basics of that. It's a matter of time revealing to

> > us what the

> > specific issues are...not of working our way through

> > the

> > perfect " plan of intervention " for kids with this or

> > that

> > disability. We learned over time that was

> > not the " typical "

> > kid with sensory issues...that his struggles are

> > massive...and we

> > have to hit those issues one by one if we are going

> > to help him. But

> > I can't go around kicking myself for not knowing

> > from the beginning

> > something that even the " experts " missed.

> >

> > > I feel like....hopeless I guess. Like I have to

> > > resign myself to this being Ebony's life.

> > Forever. >>

> >

> > My dad always says, " It is what it is " . He's

> > right...we have to look

> > at things honestly. BUT, that doesn't mean giving up

> > or " resigning "

> > ourselves to anything. So much is changing for kids

> > with serious

> > challenges, Tamara. Even for kids whose

> > disabilities are incredibly

> > complex, there are options that are helping these

> > kids to make

> > significant progress. Medical progress, progress in

> > various

> > therapies...people are making major headway into

> > figuring out

> > what " autism " consists of, and finding answers.

> >

> > I went through a time when all I could see for

> > ' adult years

> > was an institution somewhere...it was horrid.

> > Nothing we did was

> > working; nothing we tried made any real difference.

> > But over time, I

> > am starting to find things that DO work for him...I

> > am absolutely

> > convinced that there is an answer for every kid out

> > there...it's a

> > matter of finding what works for the individual.

> > And you do that not

> > by searching the world over for " the " program that

> > will work, or by

> > doing what works for everyone else, but by accepting

> > where they

> > really are, what they can and cannot do, and working

> > with the

> > strengths you find. Nothing grand and

> > glorious...putting together a

> > puzzle and seeing what the real picture is, then

> > letting that picture

> > guide what you do.

> >

> > has really had a tough time with

> > communication, too, and that

> > is one of the most frustrating things for a child to

> > endure, I

> > think. That's what causes so many unfortunate

> > behaviors...here I am,

> > living in a terrifying world that makes absolutely

> > no sense to me,

> > trying to " get " what all these people are wanting

> > from me, needing to

> > say " I can't DO this! " and not being able to...what

> > do you do when

> > every other method of getting your thoughts across?

> > Well, maybe you

> > bite someone to get their attention...maybe you slam

> > your head into

> > the wall...maybe you just check out. Communication

> > is real

> > power...if you can't communicate, you have no power.

> >

> > couldn't understand the symbolic nature of

> > language...that one

> > thing can stand for another. That's a huge barrier

> > in learning to use

> > ANY system of communication. He has memory storage

> > problems...give

> > him more than three things, and he starts losing

> > track of them. He

> > can't motor plan worth beans...signing was a joke.

> > But we discovered

> > that if we gave him just one or two

> > gestures...modified into

> > something he could do...his frustration level went

> > WAY down. You

> > have to learn what his gestures mean, but once you

> > know his system,

> > he has some power. Right now, he has a grand total

> > of 3 gestures---

> > " come with me " , " paper " , and " eat " . It has made a

> > world of

> > difference for him---he has some power, finally.

> > And you know what?

> > He's starting to try to talk. I was listening to

> > his gibberish

> > yesterday, and realized that it ISN'T

> > gibberish...it's dyspraxic

> > words...he's talking. (Now if we can just figure

> > out what he is

> > SAYING...)

> >

> > You have to look at the medical pieces first,

> > obviously.

> === message truncated ===

>

>

> __________________________________________________

>

[Guest guest]

(((((Tamara))))),

I don't know what to say.

Sue

[Guest guest]

>>communicate. I know what she wants 95% of the time

and how she is feeeling most of the time. I guess

what I was referring to was more functional language

that is universal. Something to help her in school,

etc.

But you are right. She leads me to what she wants.

It is pretty hard to mistake someone handing you a cup

and leading you to the refridgerator.... they want a

drink...duh!<<

Tamara, you have probably been doing this but I thought I'd throw it out

anyway...Have you tried getting her to make a sound, any sound at all, when

she hand-leads?

When we first tried this with Mikey he would not make any sound at all until

he started to have a tantrum. When I rewarded the tantrum he learned to

come up to me and start having a fit -- but skipped the hand-leading!! NOT

what we wanted.

After he developed some echolalia we tried again and he is getting it.

Spontaneous words are few and far between but if you are persistant he will

at least try to make the word you are saying.

Sorry if you've been doing this for 2 years.

Temple Grandin says that if a child has any receptive language before 9 or

10, that child can learn to speak. Echolalia is a GOOD thing; she is TRYING

to process the sounds you are making.

Have you looked into that auditory integration training where they listen to

CDs? I know that one of the biggest pieces for Mikey has been improving his

sensory integration, and his auditory integration has made huge leaps. We

have not done AIT but our OT keeps urging us to try it.

She's still really young hon. Really. It doesn't feel like it cause you've

been at this for a long time already. But really, she is.

Putter didn't talk till he was 4, right? And look at him now! Look how far

he's come in the last year! When the pieces click...

{{{{{hugs Tamara}}}}}

-Sara.

[Guest guest]

>>>It's funny but all along I've blocked out the

possibility that she wouldn't be fairly normal (with

some asd stuff as residual, of course) as a school age

child. I thought if I do A, and B, and C, then this

will happen.<<<

I try not to think about the future for this reason. I too want to believe that

I can control 's progress by doing the right things at the right time.

But every now and again I am hit in the face by an example of how different

is. It's hard, Tamara, when we love our kids so fiercely and yet can't

make things right for them.

I wish I could say something to make you feel better.

Hang in there

TunaGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Thanks Sara. We have looked into the AIT. It is

upwards of three thousand dollars here. And I cannot

find one study that shows improvement in the children

it tested. I have heard anecdotal stuff, but for

three thousand dollars I would really like one study

to show me something. Ya know. I have been thinking

about doing it though.

Yeah, we have been doing the manding with Ebony for a

long time. Last spring (May, June), she started

imitating verbally. But since then she has not

progressed. She will do an approximation of the word

and sometimes an exact word, but only when prompted.

She will not progress beyond rote repeating. She does

not have a concept that words represent things. She

just knows that if she repeats the sound we are

making, she will get something. When presented with

various objects on the table and given the

command...give ______, she needs to see a picture of

the item before she can choose the object. They

cannot fade the picture because as soon as she looses

the visual prompt, she can no longer succeed.

Basically, she does not attend to the word but the

picture. So, receptively she has very little. The

receptive commands she can do are all visually

prompted as well. She can pick up, throw away, shut

door, feed baby, etc. But with each of these there is

a visual prompt. Pick up is pointing at an object on

the floor, throw away is by the trash, etc. She knows

what they want her to do by how her environment is set

up. If the door is open and they give a command...Oh,

they want me to shut the door. She doesn't understand

the command itself. Does that make any sense?

Ebony will be five in September. I guess I feel like

Grace said in one post awhile ago that she feels

rushed because the window of opportunity is closing.

That is what I feel like, I guess. I have read many

times that if a child reaches five and is still

non-verbal, it is unlikely that they will become

verbal.

Talking to you guys about it though, is helping. So

thank you for listening and answering.

Tamara

The Byks wrote:

> >>communicate. I know what she wants 95% of the

> time

> and how she is feeeling most of the time. I guess

> what I was referring to was more functional language

> that is universal. Something to help her in school,

> etc.

> But you are right. She leads me to what she wants.

> It is pretty hard to mistake someone handing you a

> cup

> and leading you to the refridgerator.... they want a

> drink...duh!<<

>

> Tamara, you have probably been doing this but I

> thought I'd throw it out

> anyway...Have you tried getting her to make a sound,

> any sound at all, when

> she hand-leads?

>

> When we first tried this with Mikey he would not

> make any sound at all until

> he started to have a tantrum. When I rewarded the

> tantrum he learned to

> come up to me and start having a fit -- but skipped

> the hand-leading!! NOT

> what we wanted.

>

> After he developed some echolalia we tried again and

> he is getting it.

> Spontaneous words are few and far between but if you

> are persistant he will

> at least try to make the word you are saying.

>

> Sorry if you've been doing this for 2 years.

>

> Temple Grandin says that if a child has any

> receptive language before 9 or

> 10, that child can learn to speak. Echolalia is a

> GOOD thing; she is TRYING

> to process the sounds you are making.

>

> Have you looked into that auditory integration

> training where they listen to

> CDs? I know that one of the biggest pieces for

> Mikey has been improving his

> sensory integration, and his auditory integration

> has made huge leaps. We

> have not done AIT but our OT keeps urging us to try

> it.

>

> She's still really young hon. Really. It doesn't

> feel like it cause you've

> been at this for a long time already. But really,

> she is.

>

> Putter didn't talk till he was 4, right? And look

> at him now! Look how far

> he's come in the last year! When the pieces

> click...

>

> {{{{{hugs Tamara}}}}}

>

> -Sara.

>

>

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[Guest guest]

It's not long at all. I'm so sorry Tamara.

I can only begin to imagine how it must feel. Perhaps there

is a destiny for Ebony that none of us see yet... she may

learn to communicate in a manner none of us expect, that

enables her to have a career that none of us can guess.

Helen Keller was much older than Ebony before she ever tried

to sign, or speak, or interact. They say that Aspergers

people make the most talented computer programmers, even

with their strange social skills. Who knows what's in store

for Ebony? Maybe tomorrow she may take a tiny step. None of

us have our lives set in concrete ahead of us. We don't help

ourselves by giving up hope - even hoping forever is better

than totally admitting defeat. I will keep hoping and

thinking positive thoughts for Ebony. Maybe it will help.

in Sydney, Australia

Mum to , 6yo AS ADHD, and , 5yo mild hearing

loss

Having a hard time........(long)

I have to say that I am really having a hard time

coming to terms with the fact that Ebony may not be

able to be mainstreamed. Basically, I just got two

professionals telling me that Ebony is not progressing

in her therapy as she should be.

It's funny but all along I've blocked out the

possibility that she wouldn't be fairly normal (with

some asd stuff as residual, of course) as a school age

child. I thought if I do A, and B, and C, then this

will happen. Well, I did A, B, and C, and it is not

helping her. I don't know what D is and I don't know

if I have enough energy to do it.

I feel like....hopeless I guess. Like I have to

resign myself to this being Ebony's life. Forever.

But I am still struggling with it. I thought I had

resolved this, but what I had resolved to was just a

modification of a normal child's life. This is more

than a modification. I can't accept that she will not

be able to function in a school setting. Reading,

doing math, history, etc. But if she can't

communicate, she can't do any of that. And with all

that we have tried....it still remains that she cannot

communicate.

Sorry this is so rambling and long, but I thought that

by writing this I would be able to understand my own

feeling better.

Thanks for listening......

Tamara

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