Communication

[Guest guest]

-

Thanks for your beautiful response to my concerns about hearing! You're

right, there is a time and place for everything. Letting go and letting

things fall into their place seems to be the most peaceful way to

journey thru life -- especially in CHARGEland. I am very aware that

early immersion in language is how kids learn to communicate. Because

of that, I had intended to begin signing long ago. It's been harder to

get to it than I thought. Now that I've realized my major stumbling

block, perhaps it will come easier. Now it'll just be a matter of

finding enough hours in a day.

Michele

Aubrie's mom

IL

westml@...

[Guest guest]

My daughter, , turned 3 and started in a Pre-K program at the

Regional Day School for the Deaf recently. Her Deaf Ed Infant Teacher

and her Vision Teacher has been preparing for this for over a year by

going to Deaf-Blind Conferences, making video tapes of at home and

in transitional class settings, and working with the Texas School for the

Blind. We got approved for funding for an Intervener to work with

one on one in the classroom. The Deaf Ed program is so great BUT they

had no idea what to do with a child like who is Deaf-Blind but has

a little vision in one eye and some pretty good hearing in one ear, has a

trach, g-tube, can't yet walk due to vestibular problems, and is not

potty trained.

The Deaf Ed Infant teacher has researched extensively and had a lot of

information prepared for the Pre-K Teacher and the Intervener. is

very outgoing and knows about 60 signs.

When she started school some major problems came to light right away.

The Pre-K teacher didn't want the Infant teacher in her classroom

training the Intervener because she wanted to train her. They had not

viewed the videotapes, her notebook, list of signs, Nothing! In other

words, they had not taken the time to get to know at all and to

make matters worse they were not asking any questions about her. They

also were not open to the information I was giving them. It was a major

nightmare. But I began to make calls to the Texas School for the Blind

who gave me some great support. And after some major conferences at the

school they finally realized how they were messing up and they asked for

my help and took advantage of the resources the Infant and Vision teacher

were willing to give. Things are so much better now and are actually

going very well.

What I wanted to share with you is that my daughter was placed in a

classroom for one week where everyone just talked and signed to her but

never " listened " to her. They didn't respond to any of her signs because

they didn't realize what she was saying. She had to participate in every

activity inspite of her sensory defensiveness and without the preparation

she needed due to her multiple sensory impairments. They also had no

routine and there was nothing familiar to her in the room. began

asking to be suctioned all the time and would not participate until they

did and finally they would take her back to the chair and suction her

just to humor her. Their impression was that she was being stubborn and

manipulative. But what was happening was that the suction machine

represented the only thing familiar in the class and she needed to be

suctioned and hear the noise of it to calm her and help her get herself

together. It was also the only thing she could communicate to them

about~it was the only thing she signed that they understood. Everyday

they would say how exhausted she was and she looked kind of spacey when I

picked her up. But when we got home she was herself and would play for 2

more hours before taking a nap. I suspected that she was shutting down

on them in class because they were bombarding her with too much sensory

input without helping her to deal with it. Her Deaf Ed Infant teacher

visited the class during that week and confirmed that with me. The Pre-K

teacher also began to question whether she could even understand them at

all and if she really had the cognitive capabilities to be in the class

because she was so " unresponsive " . By the Tuesday of the 2nd week when I

took her to class she sat right down in her chair with her arms to her

side and never made another move or facial expression. She knew there

was no need to try to communicate in that classroom. She was not herself

at all and without someone there who knew her to interpret her actions

and signs she was completely misunderstood. The very day that

adaptations were made in the classroom and someone who knew acted

as her Intervener she once again became the bright and chatty child that

she is regularly and everyone at school was completely amazed.

It made me realize how important it is to do everything we can to find

ways to help our children communicate and be understood. If it only took

1 week to regress so drastically what is it like for children who

have more severe impairments?

Wife to Tim, Mom to (9), Caleb(6), (3 w/ CHARGE)

Mesquite, TX

___________________________________________________________________

You don't need to buy Internet access to use free Internet e-mail.

Get completely free e-mail from Juno at http://www.juno.com

or call Juno at (800) 654-JUNO [654-5866]

[Guest guest]

Hi Lou,

Sorry you're feeling like that. Those sound like some very painful and

frightening thoughts. It must be hard to not have anyone around you feel you can

confide in.

I don't know your situation, so I might be completely off base. But I get the

feeling you are looking at things in very black-and-white terms. Would you

really risk *everything* by sharing even a bit of your innermost fears with a

friend? Are they *really* that awful? And when it comes to " needy " - what does

that mean? It's just a label. We all have needs but they don't define who we

are. And they don't make us weak or inferior, just human.

Also, how does this fit in with your values? You mentioned you had replaced

" trust " with " tolerance " in a previous email. Could this mean that it's actually

ok to keep these things to yourself, for now? And to be tolerant of yourself for

having this experience?

Finally, do you have access to any counselling or Samaritans type service? I've

sometimes felt better for dumping a load of angst on a willing stranger!

Look after yourself,

Tom

>

> What a funny word, com-un-i-cation. I'm in a moment, please forgive me if I

ramble. I have a few people around who I actually value (even thats transitional

mostly) but I feel like I can't trust them with my inner thoughts/feelings

because they would just leave me. Who wants someone who is needy anyway, right.

I can't tell the truth because I'm scared. If they really knew what I thought

they would take me or my child. The RISKS. Sorry I don't know where to go with

this, I guess I'm just rambling........

>

[Guest guest]

> As for a therapist, gosh where to start there...I seem to have developed a

like/hate thing with him.

Ah, that'll be the transference. =)

I know just what you mean, though. I used to regularly want to smack my first

therapist (a psychodynamics guy). Fortunately I never did. Not even when he

wanted to reschedule me to 7 am.

All the best, Lou.

Tom

[Guest guest]

Lou,

It was supposed to be a wry comment on therapeutic relationships, nothing

serious.. sorry if that wasn't apparent. I think transference can refer to the

unconscious redirection of any feeling to a different person, though. Certainly

anger as well as affection.

In psychodynamic traditions, examining and untangling these feelings is an

important part of therapy. My experience of CBT is that they try to avoid it

altogether by keeping an emotional distance from the client (that may just be my

experience, though). I've no idea what ACT has to say about it, if anything.

Sorry to hear that you're struggling to keep the relationship together. I guess

the important thing is not so much whether you like or dislike the guy, but

whether he's helping or hindering you living the life you want?

All the best,

Tom

> > > As for a therapist, gosh where to start there...I seem to have developed a

like/hate thing with him.

> >

> > Ah, that'll be the transference. =)

> >

> > I know just what you mean, though. I used to regularly want to smack my

first therapist (a psychodynamics guy). Fortunately I never did. Not even when

he wanted to reschedule me to 7 am.

> >

> > All the best, Lou.

> >

> > Tom

> >

>

[Guest guest]

Thanks Lou. Always good to talk to you!

Tom

> > > > > As for a therapist, gosh where to start there...I seem to have

developed a like/hate thing with him.

> > > >

> > > > Ah, that'll be the transference. =)

> > > >

> > > > I know just what you mean, though. I used to regularly want to smack my

first therapist (a psychodynamics guy). Fortunately I never did. Not even when

he wanted to reschedule me to 7 am.

> > > >

> > > > All the best, Lou.

> > > >

> > > > Tom

> > > >

> > >

> >

>