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

[Guest guest]

Raena's right. Even a tantrum says something - it says, " I'm

frustrated. " More and more they are finding evidence that

Autism is caused by chemical imbalances in the brain. I am

not expecting a miracle cure to happen tomorrow, but none of

us know. In the future, new drugs might make even a subtle

difference so that all of our kids become that tiny bit

better. Think of it this way - a hundred years ago, nobody

in the western world would dream of hoping that an Autistic

child could ever become ANYTHING. The only meds they used

were sedatives! Look how much has changed. Life's not a

destination, it's a journey. Ebony hasn't arrived yet.

in Sydney, Australia

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

loss

[Guest guest]

Tamara,

Have you considered sign language? Has that come up at all?

I don't know much about what makes the brain process different with sign,

never having had to think about it, but I know I've read that some nonverbal

kids can and will learn to communicate through sign...

Is that an option at all?

Jacquie

[Guest guest]

Jacquie, yeah we are working with sign right now. So

far it has not been too successful. She will do it if

prompted, but not independently. Same as language.

We'll see.

Thanks,

Tamara

--- The Hunny Family wrote:

>

> Tamara,

>

> Have you considered sign language? Has that come up

> at all?

>

> I don't know much about what makes the brain process

> different with sign,

> never having had to think about it, but I know I've

> read that some nonverbal

> kids can and will learn to communicate through

> sign...

>

> Is that an option at all?

>

> Jacquie

>

>

__________________________________________________

[Guest guest]

> 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. >>

Tamara,

Have you looked into Therapeutic Listening? It is way less expensive

than AIT, and we had very good results from it...I honestly think

that the DiscEase is what gave back his receptive language

when he was shut down at around age 4 1/2 or so...

You buy the equipment and either buy the CDs or borrow them from the

therapist (many OTs and SLPs are qualified to do Therapeutic

Listening...you have to do extensive training courses for this

program to know what you are doing)...anyway, the set up costs a

little bit (a good portable CD player and special headphones---around

$300 if I recall), but once you have that, you are ready to run it

with various CDs. Our OT had us buy some CDs and loaned us others...

I think the site is www.vitalsounds.com---if that doesn't work, do a

web search for " Vital Sounds " , " Sheila Frick " , or " Therapeutic

Listening " and it should come up. Worth looking at, anyway, if you

are interested. I think I have a copy somewhere of one of Sheila's

articles outlining the specifics of the most common listening

therapies, including AIT.

> 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.>>

It took forever for to get the concept of rewards; he just

didn't connect the reward to the action. So don't discount

this...we're applauding it at my house. Once we got to manding, it

started becoming clear how much WASN'T getting receptively,

despite the fact that he seems to understand almost everything and

will respond to verbal commands correctly much of the time now. He

can't generalize stuff...so if you give him a wad of playdough that

you used to teach " squeeze " and ask him to " give " , he looks confused,

reaches toward it and starts to squeeze it...he pairs the object with

the one command, and has to be prompted physically to do something

different with it. What they want to work on after this is under

control is simple imitation, which is supposed to get us to spoken

language (eventually). is EIGHT, Tamara...and the therapist

is confident we will get some language.

> 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. >>

When was that age, he was the same way. He would be in the

tub, and I would say, " Time to get out, " ...he would just look

at me. " Bath's over, stand up " ...nothing. " Come on, time to go " and

show him the towel...zip. Then I would take his hand, and you could

see the light come on---Oh, you want me to get out. Okay...and up he

would come. It just wasn't processing. The listening therapy helped

a lot.

Are they just using one object or having her choose from two or

three? is still at the place where he gets confused if there

is more than one choice. We aren't even using cards...if he doesn't

get it, he gets a physical prompt.

Does the OT work on vestibular stuff with her? Sometimes that helps

with receptive language, because they are neurologically connected...

One extra thought...has her hearing been checked lately? Stupid

question, probably, but it is something to consider if she doesn't

understand sounds.

> 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?

This stuff is helping her make sense of her world, and that will give

her more of a sense of control. Do they always use the exact same

words when they tell her to do things? If they aren't, it might be

confusing her? I remember that what I was told was to use as few

words as possible; keep it simple so that there aren't so many sounds

to process.

On the other hand, there's that process of " repeat, rephrase, cue,

prompt " ...giving more and more information and assistance so they can

understand what you want... Don't know which idea is better, so I

toss them both out...we pretty much used a combination of the two, as

I recall.

> 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.>>

Forget the windows, Tamara...doesn't help, isn't always accurate.

Focus on Ebony...she may very well surprise you, once a few things

fall together for her in other areas. I think it's more about

neurological readiness than age markers.

Raena

[Guest guest]

Tamara,

I'm sorry you're having a hard time time right now. I know how you

feel. It's like you can handle it all fine, you have certain

expectations but at the same time you know there are certain things

your child may not be as good at as other kids. Then you get smacked

in the face by either someone else pointing out something you didn't

see or realize. Or you just begin to realize it yourself. It brings

back all the issues you thought you had gotten over from the

beginning of your life with autism. And it sucks! Your post wasn't

rambling at all, it makes perfect sense. But you never know what will

happen until it happens & the most important thing we have is our

hope that our children will turn out better than anyone expects of

them. I'm sorry, this is not very helpful at all. I just wanted to

respond to your post because I can definately sympathize.

Tracey

> 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]

> > 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. >>

I do think that giving real validity to this type of communication is

an important part of helping kids who are really struggling with

language issues. Communication has to be about making a connection

with others...if a child is doing the best they can, and we don't

accept that, they don't have an incentive to try to do stuff that is

even harder---we take away their personal power. The most important

thing we can do to help a child like this, IMO, is to let them know

that we get it...that their messages are getting through. That makes

it a bit easier to risk trying the next step...and each step moves

them that much closer to " conventional " language skills.

I tell aloud, " Oh, you want the yogurt " when he brings it to

me. I used to think that I was supposed to make him " say " something

before acknowledging that I knew what he wanted...some people believe

that if we don't demand it, they won't give it. I think that maybe

in ' case, demanding it made impossible for him to give

it...motor planning is a real trial for him, and performance on

demand is next to impossible. We get our best language from him when

he is not paying attention to the fact that he is talking--when it

just flows out spontaneously. Floortime is wonderful for that.

There are so many pieces to this whole thing. Producing spoken

language is probably the most complex thing that we humans do. From

what you have written, Ebony seems to be truly overwhelmed by so many

things in her life. She may not be able to move forward in

communication or cognitive skills until other things improve for

her. Extreme defensiveness puts everything into survival

mode...because everything is scary and unpredictable; everything has

to be watched and tended. When you are constantly worried about

surviving, any stuff unrelated to keeping me safe moves down a

notch...who cares if you are talking to me---there's this thing over

my head I can't identify that might start making terrible noise at

any given time, and I have to protect myself from that " whatever it

is " .

Jabbering too much on this, I guess....it's just that so much of what

you go through with Ebony reminds me of . I know she doesn't

have CDD...but at a certain level of sensory dysfunction, things just

come out the same, you know? Hopefully you can learn from some of my

mistakes...things I wish I'd done differently.

Raena