Re: help firends!

[Guest guest]

Gail - After Rudy being in school for 10 years I have a little experience

with IEPs. The first thing I recommend HIGHLY is to read your rights manual.

Yes, you can actually request that certain things be focused on next school

year and the school actually has to seriously listen to your requests. If

they dont, you also have a recourse thru appeals and Advocacy International

is a great sounding board also.

Take Rudy for example, the school district he was in at the age of 3 didnt

want him because they did not have an EIC program and he was in pampers. Now

they have a great program 10 years later because I stood up for his & my

rights. They HAD to take him and had to provided him with an aid and he had

to be allowed to stay in school full days if I wanted him to, which he did go

from 8 - 3 every day. It wasnt easy, dont get me wrong, but he deserved

every chance that was available to him. The school had to hire a early

childhood teacher, provide a class room and provide him with transportation.

One of my requests this year was that they focus on him tying his shoes. I

also requested 30 mins more a week on his speech. When he was in third grade

I requested an emergency IEP and had him pulled from all regular classes

except PE and they HAD to do it even though I had some opposition. It was

what I felt was in his best interest because he was having outbursts from

shear frustration. The other kids were reading & writing and doing math and

there just wasnt alot Rudy could do so he'd have to sit there and color. He

wasnt included. I know alot of you all are very in favor of inclusion, and

so am I, but there are drawbacks when the kids are at Rudy's level. To me,

inclusion means to " include " the special needs kids, not make them feel

pushed to the side. Rudy is in a living skills now with other kids and he is

very involved in his class and has been doing wonderful this year. He still

interacts with the " normal " kids at recess, lunch, and forever at home so

that I dont feel he is being secluded from life or its ups & downs (excuse

the pun! lol). Its just that by the time the kids reach Rudys age of 13 you

pretty much know whether they have strengths in reading & writing or if they

are more on the practical living side of life. Thats where my Rudeman is.

He may never read or write but he's hell on wheels with electronics, his

" artwork " , and his acting abilities.

Ok I'll get down off the box now!! lol Sorry to run on but I'm kinda

passionate on this subject. I've seen too many parents walked on.

1

[Guest guest]

Thanks 1--even though you were writing to Gail--it was sure helpful

information for me. It is great having a mom who has " been there " in our

group--thanks for sharing your experiences.

Marcia

Mom to Sara (DS) and 5 and Lucas 9

[Guest guest]

Gail: I posted that IEP site a couple of weeks ago

(maybe last week, who knows, I've slept since then

(lol)). I'm at home & can't access my work e:mail

(where I saved it), but you can check the archives for

this list at www.onelist.com and see if you can find

it there!

Good Luck,

Judi

p.s. If you can't find it in the archives, let me know

and I " ll post it from work tomorrow

J.

--- GVanHouten <rjvh@...> wrote:

> Hello everyone! My IEP is next week regarding Tara.

> Last year when they

> all came to my house, I was " mush! " just nodding my

> head yes, or no,

> like that stupid dog people have in the backs of

> their cars!!! What

> should I do different this year??? Demand or ask for

> more services{which

> they will denie anyway} Wasn't there a site that I

> think someone from

> this list just posted about recently? Myhusband

> deleted all our files

> while I was at the hospital Saturday night, so I

> can't find that post

> I'm talking about..............HELP......

> THANKS!

> Gail..........Bobby 6, Jillian 3 1/2, and

> Tara{ds} 1

>

__________________________________________________

[Guest guest]

Judi Grossman wrote:

>

> Gail: I posted that IEP site a couple of weeks ago

> (maybe last week, who knows, I've slept since then

> (lol)). I'm at home & can't access my work e:mail

> (where I saved it), but you can check the archives for

> this list at www.onelist.com and see if you can find

> it there!

> Good Luck,

> Judi

> p.s. If you can't find it in the archives, let me know

> and I " ll post it from work tomorrow

> J.

Judi dear! No, I can't find it in the archives if it's not too much

trouble could you post it sometime soon again????

Thanks

Gail

>

> --- GVanHouten <rjvh@...> wrote:

> > Hello everyone! My IEP is next week regarding Tara.

> > Last year when they

> > all came to my house, I was " mush! " just nodding my

> > head yes, or no,

> > like that stupid dog people have in the backs of

> > their cars!!! What

> > should I do different this year??? Demand or ask for

> > more services{which

> > they will denie anyway} Wasn't there a site that I

> > think someone from

> > this list just posted about recently? Myhusband

> > deleted all our files

> > while I was at the hospital Saturday night, so I

> > can't find that post

> > I'm talking about..............HELP......

> > THANKS!

> > Gail..........Bobby 6, Jillian 3 1/2, and

> > Tara{ds} 1

> >

>

> __________________________________________________

>

[Guest guest]

Hi Gail

Found this interesting article on Advocating for your child - I don't know

if it is a double up of Judi's site but it's worth a read.

http://familyeducation.com/articlepage.asp?ch_no=20 & it_no=284

Carolyn

Mum To on(8), (6 1/2), Emma (4)ds and Nicki (nearly 3)ds

help firends!

> Hello everyone! My IEP is next week regarding Tara. Last year when they

> all came to my house, I was " mush! " just nodding my head yes, or no,

> like that stupid dog people have in the backs of their cars!!! What

> should I do different this year??? Demand or ask for more services{which

> they will denie anyway} Wasn't there a site that I think someone from

> this list just posted about recently? Myhusband deleted all our files

> while I was at the hospital Saturday night, so I can't find that post

> I'm talking about..............HELP......

> THANKS!

> Gail..........Bobby 6, Jillian 3 1/2, and Tara{ds} 1

>

> ------------------------------------------------------------------------

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> http://DSyndrome.com/Multiples

>

[Guest guest]

I second what Marcia said....thanks ...!!!

Jean

>Thanks 1--even though you were writing to Gail--it was sure helpful

>information for me. It is great having a mom who has " been there " in our

>group--thanks for sharing your experiences.

>

>Marcia

>Mom to Sara (DS) and 5 and Lucas 9

>

[Guest guest]

lesfevr21@... wrote:

>

> Gail - After Rudy being in school for 10 years I have a little experience

> with IEPs. The first thing I recommend HIGHLY is to read your rights manual.

> Yes, you can actually request that certain things be focused on next school

> year and the school actually has to seriously listen to your requests. If

> they dont, you also have a recourse thru appeals and Advocacy International

> is a great sounding board also.

> Take Rudy for example, the school district he was in at the age of 3 didnt

> want him because they did not have an EIC program and he was in pampers. Now

> they have a great program 10 years later because I stood up for his & my

> rights. They HAD to take him and had to provided him with an aid and he had

> to be allowed to stay in school full days if I wanted him to, which he did go

> from 8 - 3 every day. It wasnt easy, dont get me wrong, but he deserved

> every chance that was available to him. The school had to hire a early

> childhood teacher, provide a class room and provide him with transportation.

> One of my requests this year was that they focus on him tying his shoes. I

> also requested 30 mins more a week on his speech. When he was in third grade

> I requested an emergency IEP and had him pulled from all regular classes

> except PE and they HAD to do it even though I had some opposition. It was

> what I felt was in his best interest because he was having outbursts from

> shear frustration. The other kids were reading & writing and doing math and

> there just wasnt alot Rudy could do so he'd have to sit there and color. He

> wasnt included. I know alot of you all are very in favor of inclusion, and

> so am I, but there are drawbacks when the kids are at Rudy's level. To me,

> inclusion means to " include " the special needs kids, not make them feel

> pushed to the side. Rudy is in a living skills now with other kids and he is

> very involved in his class and has been doing wonderful this year. He still

> interacts with the " normal " kids at recess, lunch, and forever at home so

> that I dont feel he is being secluded from life or its ups & downs (excuse

> the pun! lol). Its just that by the time the kids reach Rudys age of 13 you

> pretty much know whether they have strengths in reading & writing or if they

> are more on the practical living side of life. Thats where my Rudeman is.

> He may never read or write but he's hell on wheels with electronics, his

> " artwork " , and his acting abilities.

> Ok I'll get down off the box now!! lol Sorry to run on but I'm kinda

> passionate on this subject. I've seen too many parents walked on.

> 1

>

No NO, ....go on, I'm always interested in what you have to say,

esp because you " have been there " , thanks for your input! But I don't

have a manuel, just one sheet of paper regarding our rights, Tara is

only 1 and this meeting is our first annual since she was born last

year, I think I wrote my original post wrong.......sorry, it's a

EIP{Early Intervention Program}meeting, about services and such. But

it's to re-evaluate Tara and her needs{services aren't too plentiful

here in N.J.}

Gail

> http://DSyndrome.com/Multiples

[Guest guest]

1,

Thank you for the invaluable info on IEPs. I'm in a miniscule school

district and Brett just turned three...April 10th we have our first early ed

IFSP. I will read everything I can get my hands on. Have already been

told, by the local benefactor who financed the local non-profit pre-school,

that my twins could attend 'when they were potty trained'. Great. Even

isn't potty trained.

2

Re: help firends!

> Gail - After Rudy being in school for 10 years I have a little experience

> with IEPs. The first thing I recommend HIGHLY is to read your rights

manual.

[Guest guest]

Hi Carolyn,

It seems you know quite a bit about the not giving iron to DS children. I

ran out of Nutrivene D and it will be five or so days before I get the new

shipment. What I normally do in a situation like this is give Sara a

multiple vitamin that contains iron on days I don't get the Nutrivene D in

her. In your opinion is it better to give her no vitamins until we get the

Nutrivene D?

Marcia

Mom to Sara (DS) and 5 and Lucas 9

[Guest guest]

Hi Marcia

All the info I have got is from the DSTNI list and iron seems to be the big

no-no. I ran out of Nutrivene D for a whole month once due to various

ridiculous factors (OK my credit card was full and that held up my order!!

LOL)

I never thought to give the girls a replacement vitamin and they really lost

their sparkle in that month. I'll put your question to the DSTNI list and

see what they say! I would be very interested in hearing their reply!!

Watch this space.

Carolyn

Mum To on(8), (6 1/2), Emma (4)ds and Nicki (nearly 3)ds

Re: help firends!

> Hi Carolyn,

>

> It seems you know quite a bit about the not giving iron to DS children. I

> ran out of Nutrivene D and it will be five or so days before I get the new

> shipment. What I normally do in a situation like this is give Sara a

> multiple vitamin that contains iron on days I don't get the Nutrivene D in

> her. In your opinion is it better to give her no vitamins until we get

the

> Nutrivene D?

>

> Marcia

> Mom to Sara (DS) and 5 and Lucas 9

>

> ------------------------------------------------------------------------

> LOW RATE, NO WAIT!

> Get a NextCard Visa, in 30 seconds! Get rates

> as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees.

> Learn more at:

> 1/937/1/_/598201/_/954952123/

> ------------------------------------------------------------------------

>

> http://DSyndrome.com/Multiples

>

[Guest guest]

ok Gail - I did misunderstand. There are usually several places that provide

services from 0-3. The state MHMR, March of Dimes, the Elks Clubs

(especially for glasses, also summer camps), United Way, etc. You should

also call to any other MHMR services in your community. They may charge more

however if your child is on insurance or gets disability it usually covers

most of the cost.

Hope that helps.

1

[Guest guest]

Hi 2 - You may want to look into your local public schools or even

the Head Start program which will also take special needs kids. If I had to

wait for Rudy to be potty trained he would have been about 9 because he was

out of pampers at 7 but could not totally care for himself until then. The

public schools can provide really good care until you child is ready for the

private school.

1

[Guest guest]

Marcia,

Still playing catch up. I know this is an old post

but I was thinking about putting Landon on Nutrivene

D. How long has Sara been on it? Does she take the

piractam too? Do you notice a difference when she is

off of it? Thanks, mom to Landon (Ds) and

Ashton 22 months

--- Rrietmann@... wrote:

> Hi Carolyn,

>

> It seems you know quite a bit about the not giving

> iron to DS children. I

> ran out of Nutrivene D and it will be five or so

> days before I get the new

> shipment. What I normally do in a situation like

> this is give Sara a

> multiple vitamin that contains iron on days I don't

> get the Nutrivene D in

> her. In your opinion is it better to give her no

> vitamins until we get the

> Nutrivene D?

>

> Marcia

> Mom to Sara (DS) and 5 and Lucas 9

>

__________________________________________________

[Guest guest]

Hi ,

Sorry I am so slow in getting back to you regarding Nutrivene D. I have been

thinking about how to answer your question. Sara began taking MSB Plus when

she was eleven months old--we successfully got most daily doses in her;

however, as she got a little older and wasn't taking a bottle any longer, it

became more difficult to get the prescribed amount in her. We than saw Dr.

Warner, who recommended Hap Caps, so we switched to those, which Sara did not

like at all--After that, I gave her a multiple vitamin, the same that my two

boys were getting, but always kept in the back of my mind that I wanted to

try Nutrivene-D--About six months ago, we started her on Nutrivene-D.

Bottomline: Of the five and a half years of her life, she has been on TNI

approx. four years. So I have had experience with her both on and off TNI. I

wish I could say I noticed a huge difference in either health or

concentration or verbal skills, but I can't say that I have--I do know, she

has very thick hair, seems to be keeping up size-wise with other little girls

her age. She has an incredibly long attention span and will stay with a

project for quite a while and as I have said before, her speech therapist is

quite pleased with her verbal skills--would she be all that she is without

TNI? How will we ever know? I can say, I have been disappointed that it has

not kept her free from colds, as some testimonies claim..so why do we have

her on it? I can only say, it feels right for us. There are some days, I do

not get the full daily dose in her and generally, whatever food I put it in,

I have to feed it to her, even though of all the vitamins we have tried,

Nutrivene-D seems to disguise the best, so it is definitely an added task

during the day; however, one we feel is still worthwhile. Sara is not taking

piracitim. She did for about a year from 11 months to two years and then in

research, we felt there were some things we were not totally comfortable with.

Hope this helps, . If there are any other specific questions I can

answer, let me know.

Marcia

Mom to Sara (DS) and 5 and Lucas 9

[Guest guest]

Marcia,

I am curious, what did you learn in research you were not comfortable with

in using piracetam?

Margaret w/ Greyson and (ds) - 3 1/2 and Annice - almost 2

Re: help firends!

>Hi ,

>

>Sorry I am so slow in getting back to you regarding Nutrivene D. I have

been

>thinking about how to answer your question. Sara began taking MSB Plus

when

>she was eleven months old--we successfully got most daily doses in her;

>however, as she got a little older and wasn't taking a bottle any longer,

it

>became more difficult to get the prescribed amount in her. We than saw Dr.

>Warner, who recommended Hap Caps, so we switched to those, which Sara did

not

>like at all--After that, I gave her a multiple vitamin, the same that my

two

>boys were getting, but always kept in the back of my mind that I wanted to

>try Nutrivene-D--About six months ago, we started her on Nutrivene-D.

>Bottomline: Of the five and a half years of her life, she has been on TNI

>approx. four years. So I have had experience with her both on and off TNI.

I

>wish I could say I noticed a huge difference in either health or

>concentration or verbal skills, but I can't say that I have--I do know, she

>has very thick hair, seems to be keeping up size-wise with other little

girls

>her age. She has an incredibly long attention span and will stay with a

>project for quite a while and as I have said before, her speech therapist

is

>quite pleased with her verbal skills--would she be all that she is without

>TNI? How will we ever know? I can say, I have been disappointed that it

has

>not kept her free from colds, as some testimonies claim..so why do we have

>her on it? I can only say, it feels right for us. There are some days, I

do

>not get the full daily dose in her and generally, whatever food I put it

in,

>I have to feed it to her, even though of all the vitamins we have tried,

>Nutrivene-D seems to disguise the best, so it is definitely an added task

>during the day; however, one we feel is still worthwhile. Sara is not

taking

>piracitim. She did for about a year from 11 months to two years and then

in

>research, we felt there were some things we were not totally comfortable

with.

>

>Hope this helps, . If there are any other specific questions I can

>answer, let me know.

>

>Marcia

>Mom to Sara (DS) and 5 and Lucas 9

>

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>

>

[Guest guest]

Hi Margaret,

In answer to your question regarding piracetam. The resources I used were

Len Leshin, M.D. and Dr. Jack Warner. Dr. Leshin states " piracetam was

developed in the 1970's and has been studied as possible treatment for

several diseases, including Alzheimer's, sickle cell anemia, dyslexia and a

movement disorder called myoclonous. One study seemed to show cognitive

improvement in children with Down Syndrome given piracetam, but the study was

not blinded nor controlled by placebo. No other study on this topic has been

published, though introductory studies are currently taking place. Piracetam

has orphan drug status for myoclonus, but it is not FDA-approved for treating

Down Syndrome " . While attending Jack Warner's clinic in Seattle, which I was

not totally impressed with, he had information related to side effects

(seizures) that a small percentage of children were having who were taking

piracetam. Since Sara was sleeping very restless, while on piracetam, we

decided to try her without it--the restlessness subsided some, but did not

totally disappear. We have not put her back on it. I know it is a

controversial subject and I feel it needs to be whatever feels right for each

individual child and their parents. There may come a time when we choose to

put her back on, but as I stated in my earlier post, I'm not always the best

at getting everything in her, I commit to. Hope this helps.

Marcia

Mom to Sara (DS) and 5 and Lucas 9

[Guest guest]

Marcia, when did you attend the Warner Clinic in Seattle? I went a couple of

times with and had her on the Hap Caps, but I to was not very impressed

with him or his crew. That is why I have been hesitant about TNI. I will check

out your other posts for more info.

Diane mom to Adam 8, and (ds) 3 1/2

[Guest guest]

Hi Diane,

We visited Dr. Warner's clinic in June of 1997. We just went once--it was

pretty spendy, insurance did not pay and Sara's sinisitis was not helped. As

I stated in an earlier post, TNI, is a decision that not everyone agrees

on...getting lots of information and talking with others helps make a

decision either to use TNI or not. I do know Dr. Warner's Hap Caps did not

work well for us in terms of being able to disguise them. We have since had

much better luck with Nutrivene-D.

Marcia

Mom to Sara (DS) and 5 and Lucas 9