Re: News Flash- my kid is retarded

May 31, 2005

In a message dated 5/31/2005 3:31:22 PM Eastern Daylight Time,

kindafunny@... writes:

> As I work thru the tears (and I do this EVERYTIME I get an evaluation)

>

> today's is a little more stinging as the district has given Hannah the

> magic

> number " 49. "

>

Connie,

I know it's really hard, but hang in there. So much of this is

'happenstance.' It depends on the test giver and how Hannah was feeling; how

well they

clicked, etc. My mother was a teacher and she felt she could predict the

weather

by how her class reacted to barometric pressure.

I really believe that these tests were not designed to gauge our kids. When

Liam was three the school gave him a Developmental Quotient (that may or may

not correlate to IQ) of x from the test. Two months before his

developmental pediatrician gave him a score that was 30% higher -- also a

-- no

exaggeration and she felt that he'd score another 15 points higher in a

familiar setting with a familiar test giver. When I mentioned this to the

school

psychologist she demanded to see it in writing! Liam really clicked with the

developmental pediatrician and although he was and is apraxic, she got a few

clear sentences from him. She felt he was doing fabulously. So he's either

moderately retarded or borderline normal. Most of all he's Liam, just like

Hannah is Hannah. She's the same child with strengths and weaknesses that she

was

before they stuck a number on her. Only God knows her potential, so ppffttt!

(raspberry sound) to that psychologist.

Kathy, Liam's Mom (7, Down syndrome, Asthma, Type 1 Diabetes (dx 11/04))

May 31, 2005

In a message dated 5/31/2005 3:31:22 PM Eastern Daylight Time,

kindafunny@... writes:

> As I work thru the tears (and I do this EVERYTIME I get an evaluation)

>

> today's is a little more stinging as the district has given Hannah the

> magic

> number " 49. "

>

Connie,

I know it's really hard, but hang in there. So much of this is

'happenstance.' It depends on the test giver and how Hannah was feeling; how

well they

clicked, etc. My mother was a teacher and she felt she could predict the

weather

by how her class reacted to barometric pressure.

I really believe that these tests were not designed to gauge our kids. When

Liam was three the school gave him a Developmental Quotient (that may or may

not correlate to IQ) of x from the test. Two months before his

developmental pediatrician gave him a score that was 30% higher -- also a

-- no

exaggeration and she felt that he'd score another 15 points higher in a

familiar setting with a familiar test giver. When I mentioned this to the

school

psychologist she demanded to see it in writing! Liam really clicked with the

developmental pediatrician and although he was and is apraxic, she got a few

clear sentences from him. She felt he was doing fabulously. So he's either

moderately retarded or borderline normal. Most of all he's Liam, just like

Hannah is Hannah. She's the same child with strengths and weaknesses that she

was

before they stuck a number on her. Only God knows her potential, so ppffttt!

(raspberry sound) to that psychologist.

Kathy, Liam's Mom (7, Down syndrome, Asthma, Type 1 Diabetes (dx 11/04))

May 31, 2005

Tim,

You are, without a doubt, one of the most quotable guys on the list (and

I will record the date, as you did.)

Thank you for your practical kick in the pants. I guess I have to get

the RIDE ALL DAY pass for this one!

Connie

In a message dated 5/31/2005 4:14:06 P.M. Eastern Daylight Time,

tcasten@... writes:

Hello kindafunny,

Tuesday, May 31, 2005, 3:30:20 PM, you wrote:

> all that jazz but when

> it comes down to it, every child is a brand new roller coaster.

No No No

see this is where your wrong, the roller coasters are all the same the

difference is the child and how you choose them to ride it. How they ride it

is

entirely up to you and how determined you choose to be. (timbo, 2005)

--

Best regards,

Tim

May 31, 2005

Tim,

You are, without a doubt, one of the most quotable guys on the list (and

I will record the date, as you did.)

Thank you for your practical kick in the pants. I guess I have to get

the RIDE ALL DAY pass for this one!

Connie

In a message dated 5/31/2005 4:14:06 P.M. Eastern Daylight Time,

tcasten@... writes:

Hello kindafunny,

Tuesday, May 31, 2005, 3:30:20 PM, you wrote:

> all that jazz but when

> it comes down to it, every child is a brand new roller coaster.

No No No

see this is where your wrong, the roller coasters are all the same the

difference is the child and how you choose them to ride it. How they ride it

is

entirely up to you and how determined you choose to be. (timbo, 2005)

--

Best regards,

Tim

May 31, 2005

In a message dated 5/31/2005 3:14:03 PM Central Standard Time,

tcasten@... writes:

Hello kindafunny,

Tuesday, May 31, 2005, 3:30:20 PM, you wrote:

> all that jazz but when

> it comes down to it, every child is a brand new roller coaster.

No No No

see this is where your wrong, the roller coasters are all the same the

difference is the child and how you choose them to ride it. How they ride it

is

entirely up to you and how determined you choose to be. (timbo, 2005)

--

Best regards,

Tim

Oh Yes Connie ............. listen to Tim, he never lets his number (age)

dictate his ride or the count of the gray hairs on his head

Glad to see you back bubba

Kathy mom to Sara 13

¸...¸ ___/ /\ \___ ¸...¸

,·´º o`·, /__/ _/\_ \__\ ,·´º o`·,

```)¨(´´´ | | | | | | | | | ```)¨(´´´

¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸

As for me and my house, we will serve the Lord.

Josh. 24:15

May 31, 2005

Oh Connie I feel so bad for you. Why Oh why does everything have to have a

number attached to it when it is so meaningless. I can remember my brother

graduating high school by the skin of his teeth many moons ago. The guidance

counselor told my mother not to send him toi college he would never make it.

She of course didn't listen and my brother graduated suma cum laude. He

knew that all he needed to do was pass the regents (all you NYer's know what I

am talking about) and he would pass the year and so that is what he did every

year. When he got to college he did what he had to do. Don't let the number

upset you Connie. There are many people who have got Major IQ scores but

can't function socially in society. There are many with low ones that go on to

do great things. Remember Einstein was dyslexic and they gave up on him.

You just keep expecting great things from your daughter and she will surprise

you and everyone else. Now go run off to the tub and pour some calgon and a

glass of wine or a cup of tea and relax. I will say a prayer for you in the

morning that all goes well.

Loree

May 31, 2005

Kudo's Kathy I am right there with you!!

May 31, 2005

Kudo's Kathy I am right there with you!!

May 31, 2005

I remember last year when Jasmine was due for her 3 year eval. After it was

all over, and they took the usual 3 weeks to type up the results, then when

we were sitting at the table with the psych and teacher, the woman tells me

in hushed voice " Our results show that Jasmine is mentally retarded. " I

looked at her teacher, who knows my since of humor, (dangerously sarcastic at

times) and she gave me a kind of a " look " like " oh please " , but I couldn't help

it, I did it anyway. I said " Really????? " with a look on my face like it was

the first I had ever heard of it! The psyche didn't quite know what to say,

so she very gently said " Yes, Mrs. , I'm afraid so. " I just busted

out laughing, I couldn't help it! But then I had to regain my composure and

listen to the rest of the things she had to tell me Jasmine couldn't do,

that she already does! So don't put a lot of stock in those evals. Also,

every

time I have had Jasmine tested she has scored very much lower than her

actual functioning level. I don't know why either. But a lot of factors go

into

it, such as not knowing the tester, not being in familiar place some times,

being tested on things blatently too advanced for her, our counties way of

proving that they don't need to spend the money to provide what you are asking

for. Such as-don't test her on a comp program on the level she's working on,

use one far too advanced for her understanding, then you can say she can't

use the computer properly to learn, and you don't have to provide one for her,

or the programs that I am asking for.

But don't worry, I have cried many tears also. Jasmine is 13 years old now.

She has advanced slower than I expected, or had planned, or wished for. I

have cried many tears over her and her lack of ability when it comes to

cognitive things. But then she will just come out with some thing like last

night

in the car-she completely planned a vacation and gave it to us just like it

was nothing. She said- " You get your suitcase and put your clothes in it, and

you get tapes and Barbies, and you get a betwoom(her word for a hotel

room-like bedroom) and you put on your suit and go to the water-pool, and then

you

get clothes on and eat french fries, and then you go to the betwoom and watch

wartoons (cartoons) and you go to sleep! " After she said all that, I

thought, she is really getting good thinking skills to be able to plan all

that

out! And we thought she didn't have any ability to think ahead to plan things

yet! She just keeps suprising us! And your child will too! Just wait.

Sometimes it takes a while to see something new, but then it will just happen!

And that's when it's great!

I hope this has helped you some. Don't worry. Cry it out. And then wipe

your face and get the info you need, and go in to that IEP meeting prepared

with what you know your child can do, and with what you would like them to help

her learn to do during the next year. Those are the things you need to build

on. Step by small step. And then the surprise comes! She gets it!!!

Good luck !

Toni-mom to Jasmine-13-ds-such a teenager!

May 31, 2005

Hello kindafunny,

Tuesday, May 31, 2005, 3:30:20 PM, you wrote:

> all that jazz but when

> it comes down to it, every child is a brand new roller coaster.

No No No

see this is where your wrong, the roller coasters are all the same the

difference is the child and how you choose them to ride it. How they ride it is

entirely up to you and how determined you choose to be. (timbo, 2005)

--

Best regards,

Tim

May 31, 2005

Hello kindafunny,

Tuesday, May 31, 2005, 3:30:20 PM, you wrote:

> all that jazz but when

> it comes down to it, every child is a brand new roller coaster.

No No No

see this is where your wrong, the roller coasters are all the same the

difference is the child and how you choose them to ride it. How they ride it is

entirely up to you and how determined you choose to be. (timbo, 2005)

--

Best regards,

Tim

May 31, 2005

Connie, each time is assessed for something or other, she

gives vastly different results. I can't wait for Thursday, when we will

hear the results from her trienial assessments...... many many different

tests, covering all different areas. And I guarentee that the

professionals on the team will have to " sidestep " around the fact that

they will have different results (because we've done this before!). For

example, the school psych will present data on 's

language/comprehension at one level, and then the SLP will politely

interrupt and give her results, conflicting with the school psych......

so what is the real answer? This will happen in other areas as well.

Also, today the OT " prepared " me for her report (which I anticipate

being bad) because wasn't really in the mood for assessments

(probably becuase they do sooooooo many for the tri, she's burned out!).

She kep saying over and over, " we know that is capable of

doing so much more than this " and other things indicating that her

offical assessments don't represent 's abilities at all. Yet,

she has to write a report with the test data. And yet, we are talking

about a 7 year old who is fully included in 1st grade, can read, write,

and follow classroom routines very well. But, if we look at her evals

(and I haven't seen them yet, but I'm mentally getting prepared), no one

would ever believe this is for real, much less possible. My point is,

the evals don't paint a picture of your child and their potential.......

I know you know that, but it's still tough when presented with " results. "

The point is, our kids have many different abilities, strengths and

weaknesses, but one thing I think many have in common is that THEY DON " T

TEST WELL! Perhaps it's the format of standardized testing, perhaps it's

that " shut down " or " stubborn " gene that is on chromosome 21 (LOL), or

whatever, but I can't think of anyone who has ever written to say " test

results really got the entire picture " for their child. Have your cry

(because we all need that occasionally.... I guarentee that Thursday

afternoon will be one for me, with a whole stack of " bad " evals), then

get back in there and fight for your daughter. I know you don't have

" Extremely Low " expectations for her, and her team needs to completely

understand that as well. Keep remembering the I in IEP is individual,

just like your daughter, and just use your common sense...... do the

goals they are proposing make sense to you..... will they help Hannah to

learn and grow? Will she receive services like OT, Speech, APE and/or

PT? Take her " present levels " (as presented by the professionals, plus

your knowledge of her skills) and think about what you think she could

do in a year, and think positive!

Good luck!

, mom to (9), (7 DS), and (5)

kindafunny@... wrote:

>Hi Everyone,

> As I work thru the tears (and I do this EVERYTIME I get an evaluation)

>today's is a little more stinging as the district has given Hannah the magic

>number " 49. "

> This means she can function within the " Extremely Low Range " of

>cognitive functioning. I guess that I'm supposed to have " extremely low "

>expectations, then.

> I don't know what I am supposed to do at this IEP on Thursday. I have

>been reading everything that is written about IEP's and all that jazz but when

>it comes down to it, every child is a brand new roller coaster.

> If only there was a way for me to take the emotion out of this stuff and

>not react to the numbers as if they were a cancer.

> Okay- I have to go sob now... I only have 12 hours to do that since I

>have to be clear headed tomorrow to prepare for the IEP.

>

>Connie

>

May 31, 2005