Re: Re: yet another MR(karen)

March 1, 2008

Hi ,

My school district refrains from doing psychological testing with because

they know its not a true picture of . Its not a good picture because of his

speech output and that he knows its a test and will not answer and acually shut

down.

Numbers do not describe our children, their beautiful souls define them.

I have the same issues with wanting to know exactly what the deficits are. Now

that you do you feel lost and probably let down. On the positive side you know

now and now can target those areas.

I never knew it would be this hard but the #1 word for my life with my son is

preserverence and patience.

I hear you and totally understand what your going through. I send you

compassion and love

chris

[childrensapraxiane t] yet another MR

>

> 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.

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

> 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

>

March 3, 2008

,

Your story is exactly why I write on this board! I know your pain and I have

absolutely been in your shoes..... my son's condition is your son's condition.

He IS now in regular school, and we HAVE brought his IQ up to normal levels....

an IQ test is a wake-up call for you. It is a reality check as to what global

dyspraxia is all about. I will not kid you here.... global dyspraxia is a lot

WORSE then you ever thought it was. Some of Mark's issues were on the 3% in

grade 3 so...... YES..... you can change the outcome here and it is not too

late!

How hard are you willing to work because it is darn hard! You are only human

(this is something I have had to learn), not super-human but global dyspraxia

requires that you become 'super-human' not just for a day but for several years!

From here on in, your child will fall further and further behind the others

unless you take action. You know, I could sugar-coat it like all of my doctors

did.... there, there dear, he'll grow out of it and you could spend the next

5-10 years 'waiting' for him to catch up. Each year, though, he will get

further and further behind the other kids. One day, you will realize that your

child's future is absolutely impaired and that he will probably never be able to

hold down a job. The doctors were wrong and he didn't grow out of it. This was

my story...... This was my son's story and I know one thing..... I left it too

late.... well maybe not too late but darn close.

You have a chance! You can beat the success of my son. My son will probably

have hand issues for life.... perhaps minor but still there. I continue to work

them daily but I don't know if I can ever win this battle since I got aggressive

too late. But you can! You are starting 6 years earlier than I did! I got

aggressive when Mark was 11 and he is considered neurotypical today. (Though I

still feel his hands are impaired and a few other items need work..... he is

well enough to be considered NT) We only took 1.75 years to do it! But I got

darn serious and darn motivated. I read every book in sight and worked my butt

off!

Dry your tears and get to work! You need to make a plan of action. EVIL

DYSPRAXIA!!! You must make a 'soul' committment to fight it with every thing

you've got and we will all be here holding your hand....okay?

Are you a stay at home mom? Would you consider homeschooling for a couple of

years so that you could devote your days to home therapy? If I could do it

again..... I would have homeschooled with NACD for grades 2-4 and gotten this

darn thing taken care of. If you homeschool, you have the best prognosis

because you can work with your child through the day and slip in therapy.

BUT..... even if you work, you can still do therapy before and after school.

This is what I did. But you will need help because daily therapy is exhausting.

You need a support person or two (hubby? grandparent?) to help you get therapy

done if you work. Global dyspraxia requires daily therapy to beat and this is

best done by the parents via home therapy, whether it be NACD, INPP or a program

that you design on your own.

HOME THERAPY is the only thing that has worked for us. Yet.... it did work and

it was successful. Your child is waiting to be rescued and you can do this and

you can save him. I have saved my Mark and I know that you can save your .

The IQ test is NOT the person.... it is a measure at a particular time on a

particular day.... never forget this as you continue your journey.

Note: we are now planning to bring Mark's memory and IQ levels up to 'superior'

levels. Alison has convinced me to get working a little harder on this (I

started slacking when we got him up to 'normal' this summer). She really feels

that Mark can really get to a supremely accellerated level. So..... I am going

to try to 'work-it' a little more..... We have our action plan and will be

zooming to that goal of being a brain surgeon yet!

Please, Please, Please..... take this warning seriously but do not believe that

it is a life sentence..... okay? You can really change things for the

better.....

Janice

Mother of Mark, 13