Re: Evaluations and CSEs

[Guest guest]

In a message dated 12/2/1999 4:02:29 PM Eastern Standard Time,

Nekotek@... writes:

<< I just hope I'll always be able to get the right services for her. My

school district apparently likes to wait until academic performance in the

classroom is compromised before they can justify services. >>

To all:

I know I'm new at all this parenting stuff but I have a question that

concerning the services. Do any of you get tutors for your kids? If not,

why not? If so, why? Do you have to have a certain type of tutor? We have

a company here that is called Sylvan Learning Center. My nephew (who we

think has Fetal Alcohol Syndrome or now maybe he is Mosaic) went there for

extra help in Math and English. They were able to help. However, he seemed

to learn to lean on them. They never felt like he had learned enough to be

released. Maybe this is a question for the older parents. Did Dylan ever

have tutors? If so, did he benefit? I have learned that in the school

system here in Tennessee just because of the diagnosis Karlee can have an aid

with her in the classroom. Does anyone have this?

I know this is sort of jumpy and sloppy. I'm at work and I'm trying to put

my thoughts down real quick! Let me know if there are any confusion.

Thanking you all in advance for your answers.

Beets (Mommy to Karlee, 7 mos. mds)

[Guest guest]

Hi ,

My daughter is 5 years old and in a contained class in the morning and

mainstreamed into reg. K in the afternoon. I decided to get her a tutor so

that I can have some say in what she is learning. I wanted to give her the

extra help also. I hired a first grade teacher from the school she attends

who also has her Masters in Special Ed. I think it is important to get a

tutor who has that background. I am finding that the regular Kindergarten

teacher she has is having trouble with my daughter in her class because she

lacks the training in special ed. The tutor will also be able to communicate

with the my daughters special ed teacher on her progress. I think it is

going to be very beneficial.

Take care,

Jeanne (Mom to Nicky 12, le 10, and 5 MDS)

[Guest guest]

In a message dated 12/5/99 1:29:13 PM Eastern Standard Time,

gm3bc@@... writes:

<< If you see KC for a few minutes, you see how different he is from the

normal DD population (there it is again) and assume that he needs no

services. You need to spend time with him to see the differences that need

help. So what do you wish for? Good scores equals increased probability of

life success minus services which means reduced probability of life success.

Or poor scores which equals reduced probability of life success plus services

which means increased probability of life success. >>

Greg:

Thanks for your, as usual, thought provoking response to my post. You truly

are a great asset to this group for your experience and your insights as well

as KC's.

It sounds like you have experienced this same situation with KC as far as

test scores that indicate a person who doesn't need support, yet spending

time with the person does indicate weak areas that need to be addressed. Do

you have any advice on what I can do to persuade my school district to

continue speech therapy. Their own standardized tests show the weak areas,

but they keep insisting it is only one area. Now I would think an area that

involves being able to verbally express thoughts that involve the use of

critical thinking skills would be a pretty important area, one that should

not be overlooked by using the mentality that since she does so well in

everything else that this thing might just always be a weakness for her.

Should I consider a private speech therapist? Are there speech therapist in

the private sector who work on language concepts, since this is not an

ariticulation issue? I really feel the school district has an obligation to

continue the service but they don't see it that way, as long as she can

function well in the classroom, which right now she is doing. How do I make

her teacher and speech therapist see the same things that I see at home? I

still get very upset by this because I only want to help as best I

can and I hope I will be able to do the right thing for her.

Any suggestions?

ann (Mom to , mds 6 yrs old and 9 yrs old)

[Guest guest]

> <<<<< but they just keep going back to her test scores and telling me she

really doesn't qualify and that her scores show she is doing extremely well.

>

> My school district apparently likes to wait until academic performance in the

classroom is compromised before they can justify services. I don't know whether

to be happy she scored so well on the evals or to be sorry she didn't do poorly

so she would be guaranteed the help. I guess I'm back to waiting for her to

have significant difficulty which goes against my philosophy of giving her

support so that problems can be avoided and kept to a minimum.

> ann (Mom to , MDS 6 yrs old and 9 yrs old)>>>>>

All: An interesting conversation over the last week about sadness, working

through sadness, test scores, and being caught in the service delivery crack.

Sadness: Here's how I trace it -- The sadness comes from disappointment. The

disappointment comes from comparison -- of who we thought we were going to be

versus who we actually are, as an example. I heard a speaker several years ago

named Dennis Prager. The title of his presentation was " Happiness Is A Serious

Problem. " One of his thoughts is that the root of unhappiness is in that

comparison -- ourselves to someone else, ourselves to a fictionalized picture

of who we should be, and so on. Remove the comparison and focus on what truly

is, and a major hurdle to happiness is removed. I have been convinced for a

long time that the anger that KC has had to work through is really grief and

loss. And his grief and loss come from comparing himself to others.

Several times in messages to you he has said things like " You can't really know

what it's like for your kids " , and " If you think it hurts you, just try to

figure out how much it hurts your kids. " I think he is right on the money, and

what it does is create a very big responsibility for us as parents. It's

important for us to be in touch with our feelings of sadness about our kids. We

should never deny or avoid those feelings. And yet what has worked best for me

is to feel them as deeply as I can, examine them from every angle, corner and

viewpoint and take all the time I need to do that; celebrate them because they

are my humanity expressing itself; and then move on. Because what we move on to

is the responsibility to be there for our kids. They can't move on, or at least

not as easily. It is really them who has to live this life directly.

Test Scores: ann describes the situation of many MDS parents and kids very

accurately above (I think that over time this e-mail conversation will result in

that issue being addressed at a policy level someday in the future, but I get

ahead of myself.) I remember telling a good-hearted case manager, who had just

given me the bad news about KC's good test scores (MDS life is such an oxymoron

sometimes), " All it means is that your tests aren't sophisticated enough to pick

up the differences. "

If you see KC for a few minutes, you see how different he is from the normal DD

population (there it is again) and assume that he needs no services. You need

to spend time with him to see the differences that need help. So what do you

wish for? Good scores equals increased probability of life success minus

services which means reduced probability of life success. Or poor scores which

equals reduced probability of life success plus services which means increased

probability of life success. A no-right-answer double bind, which is by the

way, not our fault. MDS life in the current service assessment model is a

Catch-22. And it's really not fair to the kid to be on such a systemic yo-yo.

I have long thought that the system needs to address it. There must be others

with different syndromes and complications who are in the same boat.

This is why a sympathetic (as opposed to rule based) professional is so

valuable. When you find one, tell them thank you frequently and hold on to them

tightly. If they are not, try to help them become one (all of us are trainable

after all.)

Conclusion: The Mr. Prager referenced above also shared with us the secret to

happiness. I use his answer every moment of every day (or at least try to.)

The secret to happiness? Gratitude. Grateful people are happy, ungrateful ones

aren't. Delete your comparisons files and load your gratitude files deeply into

your heart.

So I leave you today with a quote from one of the leading philosphers of our

time, Buzz Lightyear in " Toy Story 2 " : " Life isn't worth living unless you are

loved by a kid. "

Greg, with KC (MDS, 26 days to age 20 and still sleeping), Ben (21 and probably

still sleeping), Molly (18 and probably still sleeping) and Ellen (15 and

probably . . . well, you get the idea.)

[Guest guest]

Jeanne:

This sounds great! Thanks or letting me know. I think that sounds very

beneficial for .

Keep your head up!

[Guest guest]

> Do you have any advice on what I can do to persuade my school district to

> continue speech therapy. Their own standardized tests show the weak areas,

> but they keep insisting it is only one area. Now I would think an area that

> involves being able to verbally express thoughts that involve the use of

> critical thinking skills would be a pretty important area, one that should

> not be overlooked by using the mentality that since she does so well in

> everything else that this thing might just always be a weakness for her.

> Should I consider a private speech therapist? Are there speech therapist in

> the private sector who work on language concepts, since this is not an

> ariticulation issue? I really feel the school district has an obligation to

> continue the service but they don't see it that way, as long as she can

> function well in the classroom, which right now she is doing. How do I make

> her teacher and speech therapist see the same things that I see at home?

> ann (Mom to , mds 6 yrs old and 9 yrs old)

ann: Sorry I didn't respond sooner but I have been out of town since

Sunday. Your questions are tough ones. I will probably take a little time to

think about this, and maybe ask KC what he thinks. You might get two answers

from me on this one.

As a general principle, I really don't like the private therapist route for

something the school district is required by federal law to provide (i. e. the

parents paying for something intended as a part of 's free public

education.) What if you couldn't afford it? Public education as social policy

is all

about reducing the distance between haves and have-nots. What about the next

family that comes along with the same issue who can't pay for private services?

Now of course if you found a sympathetic therapist, you could leverage their

findings into a school district obligation, but that obligation exists anyway.

You

shouldn't have to play games to have it fulfilled.

Although this may sound contradictory, somehow my thoughts go toward something

like " Find an expert. " When you need plumbing done, you go to someone who does

it for a living. The same principle should apply here. (Just make it a free

resource, not one you have to pay for.) Now, who does this kind of long-term

progress assessment in your area? The local Assoc of Retarded Citizens are a

great clearinghouse for information. I just found out from KC's case manager

that our office has a legal or quasi-legal wing that she plans to utilize in

order to get KC better service from the school district so he can finish his HS

diploma. My experience is that they are very familiar with all of the issues

that we find so unique.

Another possibility is a local college or university in your area with a Special

Education teaching program. (This would probably be in the School of

Education.) Your questions about the relationship between critical thinking and

verbal skills are pretty sophisticated. Maybe they are beyond the education of

a

public school teacher and require a researcher or Ph. D. to answer. Make no

mistake, they ARE legitimate questions, and just because scores well

on the current bank of tests that the school uses doesn't mean you're wrong.

Maybe there are more sophisticated tests, maybe there is new research, maybe

you're

right and the teachers know it but are limited by rigid school district

procedures, maybe a lot of things.

If this sounds " outside the box " , well, I guess that's what it is. Inside the

box is where we get stuck a lot of time. Let me think about it a little more

and get back to you again.

Greg with four kids who I haven't seen for a week. Glad Christmas is coming.

[Guest guest]

In a message dated 12/9/99 12:12:35 AM Eastern Standard Time,

gm3bc@@... writes:

<< As a general principle, I really don't like the private therapist route

for something the school district is required by federal law to provide (i.

e. the parents paying for something intended as a part of 's free

public education.) >>

Greg:

Thanks for your reply. I appreciate all your imput. I too have strong

feelings against getting a private speech therapist because I do feel it is

the school's obligation. Hopefully I will find a way around this.

ann (Mom to MDS 6yrs old and 9 yrs old)