Help-lost for wording/functional IQ? Tim?

April 27, 2007

Problem-applying for services. In this case, transportation.

---

I can explain the physical aspects of multi-sensory impairment, but without a

mental health diagnosis, I've never been able to adequately justify the

processing threshold,

or articulate the necessity of not crossing that threshold.

---

In describing it, I would say that there is a stress-point beyond which

occurs

a disintegration of both coping and processing abilities. And then what?

Or better, that the stresspoint is lower due to:_____what?

Inherent emotional immaturity?

Lower functional IQ? - I like that, but it's not documented. I have no test

or dx to substantiate that.

---

What do we call this " extra " that comes compliments of CHARGE?

This is the one thing that has had me saying over and over thru the years-

" But you don't understand....how it is, what happens, why it doesn't work

the way you think

it will...etc..etc. "

---

Is functional IQ an accepted thing? Maybe we can make it so.

It seems as though we could make good use of it.

---

Any clues, suggestions?

Thanks,

in Ma.

************************************** See what's free at http://www.aol.com.

April 27, 2007

:

I agree with all you describe and say about this issue! How can one convey

the " moreness " of the issues individuals with CHARGE face?

People/school/service providers don't understand and can't accept that the

abruptness in the change(s) of behavior is when reaches that

point-of-no-return and I-can't-cope-anymore frustration level. (Someone on

this list once referred to it as the

" falling-off-the-cliff-and-can't-stop-myself " aspect.) And they do nothing

to avoid, assist, or alleviate the frustration or sensory threshold.

And I am tired of being told by the school that I am " justifying " or

" rationalizing " 's behaviors! We point out reasons she might act out

negatively (classroom print that is not enlarged, sinus issues, other

students taunting her, staff being insistent she has to pay attention in an

upright position, pain due to JRA, fatigue, etc.) and they say we are making

excuses for her!

used to love school; now she hates it where she is. I feel so badly

for her, but there is little to be done right now. Her school understands

Deaf; they do not understand the dual sensory or multiply impaired, and

especially not processing disorders.

We should not have to keep telling the same people over and over that they

don't understand! They need to be open to what we are saying and what the

individual is saying; whether that is with words, actions (good or bad), or

through no response at all! (And they certainly don't get THAT concept:

That a non-response can be a response!)

I look forward to Tim's reply to your posting. I know I have no real help

or ideas. The words just aren't there to describe this in ways ordinary

people can understand.

Friends in CHARGE,

Marilyn Ogan

Mom of (14, CHARGE+, JRA)

Mom of Ken (17, Aspergers)

Wife of Rick

oganm@...

_____