yet another MR

[Guest guest]

Hi everyone.. This is very long winded, but try to read to the end if

you can. And I promise you, I havent made any of this up.

I have been a member of this board for a long time, however I havent

been actively reading/posting due to my own plate being full, and just

not having the time. However due to recent events in my, and my childs

life I have been " thirsty for information " once again. Which has

brought me right back here.

Lucky for me, my area of need happens to be the " hot topic " the last

few days. The diagnoses and/or classification of MR(mentally retarded).

Someone (I think Carolyn, and please accept my appologies now if I am

wrong, or if I misquote) said that MR is no longer used, and that

the " new " term is Developmentaly Disabled, or Cognitively Disabled.

In the last 2-3 months, my daughter was Re-evaluated by the Child study

team at her school. She WAS in a mainstream Transitional First grade

classroom. Her teacher had to modify an already modified curriculum,

and her Neuro-Developmental pediatrician felt that a re-eval was

warrented. I agreed.

The tests results came back- She scored a 78 IQ. And I quote the

CST, " That number reflects a boarderline MR diagnoses. Although we dont

agree your daughter is mentally retarded, due to spikes in some of the

areas we tested her in, however, it is apprarent she has multiple

disabilities and should be placed in the MD classroom. And placement

can be made in September "

I quickly took these results and full reports to her neuro, and to my

surpise she agreed with the school. Maybe surprise isnt the right word-

a kalidiscope of emotions from fear, denial, anger, and even

depression. We all worked so hard for so long, I wasn't ready to accept

that this could possibly be true. My daughter mentally retarded? The

same child who started pre-k at age 3 with 100 signs, stringing them

together into small sentences to communicate. The same child who

actively competes in horse shows now, and placed 5th and 6th out of 10+

riders who are " neuro-typical " (Thats another story/post regards to

hippotherapy/theraputic riding)My point is, I didnt, or couldnt believe

that the 78% was accurate, and the professionals were telling me she

is " boarderline MR "

While I agree, that the MR label has such a negative stigma attached to

it, it is a term that people are familiar with. They know exactly what

it means in the sence of where an individual is in their ability to

take in information, process it, store it, and use it later on. It also

defines ones ability to function in the " real world "

Lets take the term, Developmentally Delayed/Disabled. For me,

personally, that is so broad. Additionally, if your child was elligible

for Early Intervention, they were then classified on paper as

Developmentally Delayed, which in turn, to someone who is knew and not

knowing the lingo would then think that means their child is MR. Or

someone who received an MR label would or could possibly think, their

child is worse off then the DD label..

The ARC website uses both terms of " Intellectually and Developmentally

Disabled " and mentally retarded.

http://www.thearc.org/NetCommunity/Page.aspx? & pid=405 & srcid=266

In the history of the medical community there has been lots of

terminology that has been changed on paper, but ordinary people, and

the professionals have not yet made the switch. For example, diabetes.

Juvinile diabetes is not used, (although the foundation is still

there,) the term is now type 1. I think I heard somewhere that Type 1

and Type 2 terms are fading out, its now " insulin dependant, or non

insulin dependant " . There are tons of examples, manic-depression, now

bi-polar, add-adhd, now just ADHD with a litany of subtypes,

Here is my favorite. APRAXIA. There are various ways to title it. But

probably the most offensive (in my opinion) is Childhood Apraxia of

Speech. Tell that to a pre-teen, or teanager he has a childhood

disorder. I understand, that is the age when the apraxic child is

diagnosed, but it does't go away when the child is no longer a child in

chronological years. So for God sake lets just stick with one neutral

AND simple term.

I really wish an organization would develop that is sole purpose was to

send out memo's of the lastest terms in the medical community.

Ohh, here are a few examples of how our NCLB act has recently confused

teachers, and professionals. What was once, SLD placements, (specific

learning disabled) is now LLD (language learning disabled), MH

(multiple handicapped, is now MD, (multiple Disabiled). Emotionally

Disabled i think nk is now Behaviorally Disabled. I may have a few of

these crossed, but the point is, things are always changing, morphing,

and sometimes, and people can never agree on one term.

####Getting Back to my daugher#######

I ultimately decided to do 2 things. One, place her in the MD class to

give her " something " rather than basically nothing academically. And to

hire an independant evaluator. SURPISE! My daughter scored in the 94%

on the CTONI- (the Cognitive Test of Nonverbal Intelligence)

What does that mean for me and her. As said by the professionals.. she

is not mentally retarded.

Ohh, and she hid in her room with the cordless extension phone making

phone calls without my knowledge yesterday- she called her daddy. I

found out, because he called me to let me know it was " cute " how i let

her call him. I said to her, show me how you did it. She scrolled

through the called ID, read is name then hit the talk button which

automatically dials the number on the caller id screen on the phone

handset. You may ask, " who else did she call? " Her aunt, her brother,

and last but not least, her school. She called them to let me know she

was sick, had an ear infection and wasn't coming into school. And you

may now ask, " who did she speak with? " Her case mgr from the CST. Ya

know.. the one who said she was boarderline MR.

Dawn in NJ