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What Company sells this? I'd love to see it. (hoping there is a website)

Caty is using (well, actually ignoring) her TechSpeak and she uses a

StepbyStep for small naratives between home and school. I just asked for her

to be evaluated so we could find something else. We've added keyboarding to

her IEP next year, did you do that with Mav? I'm hoping that at some point

she'll be able to type in what she wants to say and the device (with voice

output) will help her get her point across.

Re: questions

> The vantage is a augmentive communication device. You push the button and

it

> says the words. There are alot of different styles and types. When he

was

> younger, Mav had the Alphatalker. The Vantage is smaller and " more

mature " .

> They both are based on the minspeak symbols. You can set the pages to the

> number of pics that you want.... 4 to 64 is what Mav's is set at.....I'm

not sure

> if it can be more...we are using 32 for most pages. You can set

different

> pages for different subjects.....like I made a page just for FAIR info

when he

> was at the county fair....and they made a page to go with his Power Point

> presentation at school.

>

>

>

>

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In a message dated 5/29/2003 3:50:05 PM Central Standard Time,

web4mom@... writes:

> Anyway folks, I need your input for a response.

> Bev

HI Bev :)

You may have already been asked this question but is your name on the

notification letter, notifying the parents of your attendance? Also what role

are you

going to take lol and what happens if your school pulls something shiesty on

the parents or wants you to .......... just curious I wonder if

parent/teachers are at risk of job security if they tell the truth

Kathy mom to Sara 11

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In a message dated 5/29/03 10:40:00 PM, web4mom@... writes:

<< At this point, I need a snappy, tough-neighborhood-of-Brooklyn come-back.

??????? Ralph???????? Help! >>

Bev,

us the tough neighborhood of brooklyn??? naw ask kathy- shes got hip boots!!

in scary brooklyn

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OK, needed to read this one first- i think you should definately recluse ( is

that the right word) yourself from the spanish IEP because they need to

provide a translator thats not you. I also think you should some how inform him

of

your knowledge of ieps without telling him but by pointing some inacurracy in

it that you can get him on.

I do that all the time with amanda's principal just a gentle reminder about

how if blah blah they could possibly be out of compliance blah blah....

Keeps her on her toes, but you should not explain yourself to your principal

at all, but not do anything else to save anyone time, effort, energy, etc.

Sorry, still no snappy comebacks here we just tell people to (oops what i

want to say i cant on the list!)

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We had some weird experiences with speech therapists. Of course in

's day we had to find, and pay for, private therapy. We had one session

with a gal who talked about horsies and doggies, and such. You get the idea.

Didn't go back. He went 3 days a week for 6 weeks to a summer program at the

Rehab Institute. I was able to watch part of the time through a special

mirror. I think they were 1-hour sessions, I don't remember for sure. She

spent

most of the time with some little toys teaching him ON, UNDER, that kind of

thing. He knew those things before they started but he was bored with the whole

thing so would give her wrong answers. That was obvious to me but she never

caught on. So that was mostly a waste of effort. Finally we found a woman

who was very good, she worked in her home. Every now and then she would come

out of the room and double up laughing, then straighten her face and go back

in. kept breaking her up. She said he gave he answers she never

thought of. He went to her for some time and she was good. Eventually he did

have

some therapy at school, that we paid extra for. This was a man and he would

give me things to work on with him too.

In our experience there were a lot of different ideas on what to work

on and what " speech " therapy consists of. Jessie

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From another Brooklynite tell to get with the program you a** wipe. Or my

favorite bite me you a**wipe. Unless you want street talk.

Maureen

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Wait till you hear I question I was asked by my principal! I'm a school

librarian. In my continually shrinking non-school life, I am a mom of a son

with DS, (which my principal knows), an owner of the book Better IEP's,

long-time listserv member, attendee at a gazillion SpEd parent education

meetings and conferences, etc. For the past five or six years I have

basically written my son's IEP; his teachers have appeared sincerely

grateful that I've saved them so much work. This morning I was asked to

translate (I was a Spanish teacher before I became a librarian.) for an IEP

meeting--for no compensation, of course. I had to remind the administrative

designee that the parent needed to be advised of her rights before she

signed the IEP.

So... the subject of IEPs came up at a conversation with my principal,

and in his usual somewhat abrasive streets-of-Brooklyn style (which I

usually enjoy), he said to me, " What would you know about writing IEPs? "

I usually really like this guy, but I am really P.O.ed at this comment, and

am thinking it deserves a response. If I didn't feel so strongly that the

Spanish-speaking parents needed the assistance of someone who could explain

the process and their rights, I would just tell him to inform the Special Ed

department that I am not comptetent to be at their IEP meetings.

Anyway folks, I need your input for a response.

Bev

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ROFLOL this is usually my problem :)

> (oops what i

> want to say i cant on the list!)

>

> L

--

Leis.... Aussie mum to 5 ,Natasha 1 and Jellybean due Oct 03

An adventure is only an inconvenience rightly considered. An inconvenience is an

adventure wrongly considered.

G. K. Chesterton (1874 - 1936)

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Why didn't you tell him you have written your son's IEPs for the past 5 years.

If he is surprised, tell him he should talk to your son's teachers.

Also, you should tell the Spec Ed Dept they need to pay you for translating. I

would call the hospital admissions and ask if they get paid extra when they

translate for a patient.

mom to Bridget 10

RE: questions

Wait till you hear I question I was asked by my principal! I'm a school

librarian. In my continually shrinking non-school life, I am a mom of a son

with DS, (which my principal knows), an owner of the book Better IEP's,

long-time listserv member, attendee at a gazillion SpEd parent education

meetings and conferences, etc. For the past five or six years I have

basically written my son's IEP; his teachers have appeared sincerely

grateful that I've saved them so much work. This morning I was asked to

translate (I was a Spanish teacher before I became a librarian.) for an IEP

meeting--for no compensation, of course. I had to remind the administrative

designee that the parent needed to be advised of her rights before she

signed the IEP.

So... the subject of IEPs came up at a conversation with my principal,

and in his usual somewhat abrasive streets-of-Brooklyn style (which I

usually enjoy), he said to me, " What would you know about writing IEPs? "

I usually really like this guy, but I am really P.O.ed at this comment, and

am thinking it deserves a response. If I didn't feel so strongly that the

Spanish-speaking parents needed the assistance of someone who could explain

the process and their rights, I would just tell him to inform the Special Ed

department that I am not comptetent to be at their IEP meetings.

Anyway folks, I need your input for a response.

Bev

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Boy, do yours and my " great minds " work alike! My actual words to him

were, " You should ask the teachers my son has had for the last five years or

so. I write my son's IEPs every year and they will tell you that I write

very good ones! "

We are definitly going to have to discuss the translating. I not sure he

even knows that the SpEd department has suckered me into doing it. Think of

the legal liability! A parent that is unhappy with the IEP or the services

could say that it wasn't explained to them correctly, that they weren't told

such & such, that they were told something else, etc.

At this point, I need a snappy, tough-neighborhood-of-Brooklyn come-back.

??????? Ralph???????? Help!

Bev

Re: questions

Why didn't you tell him you have written your son's IEPs for the past 5

years. If he is surprised, tell him he should talk to your son's teachers.

Also, you should tell the Spec Ed Dept they need to pay you for

translating. I would call the hospital admissions and ask if they get paid

extra when they translate for a patient.

mom to Bridget 10

RE: questions

Wait till you hear I question I was asked by my principal! I'm a

school

librarian. In my continually shrinking non-school life, I am a mom of a

son

with DS, (which my principal knows), an owner of the book Better IEP's,

long-time listserv member, attendee at a gazillion SpEd parent education

meetings and conferences, etc. For the past five or six years I have

basically written my son's IEP; his teachers have appeared sincerely

grateful that I've saved them so much work. This morning I was asked to

translate (I was a Spanish teacher before I became a librarian.) for an

IEP

meeting--for no compensation, of course. I had to remind the

administrative

designee that the parent needed to be advised of her rights before she

signed the IEP.

So... the subject of IEPs came up at a conversation with my

principal,

and in his usual somewhat abrasive streets-of-Brooklyn style (which I

usually enjoy), he said to me, " What would you know about writing IEPs? "

I usually really like this guy, but I am really P.O.ed at this comment,

and

am thinking it deserves a response. If I didn't feel so strongly that

the

Spanish-speaking parents needed the assistance of someone who could

explain

the process and their rights, I would just tell him to inform the

Special Ed

department that I am not comptetent to be at their IEP meetings.

Anyway folks, I need your input for a response.

Bev

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The liability concerns me greatly! Isn't it interesting that I was the one

to bring up explaining the parent's rights to her in Spanish! I won't be

doing this again without a very serious discussion with the administration.

Bev

Re: questions

In a message dated 5/29/2003 3:50:05 PM Central Standard Time,

web4mom@... writes:

> Anyway folks, I need your input for a response.

> Bev

HI Bev :)

You may have already been asked this question but is your name on the

notification letter, notifying the parents of your attendance? Also what

role are you

going to take lol and what happens if your school pulls something shiesty

on

the parents or wants you to .......... just curious I wonder if

parent/teachers are at risk of job security if they tell the truth

Kathy mom to Sara 11

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I like " bite me. " That one I do use.......occasionally.

Jackie, Mom to 15ds, 12, and Bradley 9

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In a message dated 5/30/2003 6:21:42 AM Central Standard Time,

jbocci55@... writes:

> I like " bite me. " That one I do use.......occasionally.

>

>

> Jackie, Mom to 15ds, 12, and Bradley 9

HI :)

Sara did too last week, hubby has said it on rare occasions ............. I

think to me lol

Kathy mom to Sara 11 ............... We REALLY have to watch what we say

around here :)

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I have spent enough time in NY to know that not all of Brooklyn is tough

neighborhoods with gangs & high crime. However, due to your proximity to

them, I thought you gentle folk might be familiar with the culture.

Bev

Re: questions

In a message dated 5/29/03 10:40:00 PM, web4mom@... writes:

<< At this point, I need a snappy, tough-neighborhood-of-Brooklyn come-back.

??????? Ralph???????? Help! >>

Bev,

us the tough neighborhood of brooklyn??? naw ask kathy- shes got hip boots!!

in scary brooklyn

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In a message dated 5/29/2003 11:19:57 PM Eastern Daylight Time,

linman42@... writes:

> Bev,

> us the tough neighborhood of brooklyn??? naw ask kathy- shes got hip boots!!

>

> in scary brooklyn

The only people who need to be scared up here are those that mess with our

kids!

Kathy, Liam's mom( 5) (from almost brooklyn)

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Oh I can so relate. I accidentally said " s*** " in front of Jordan, who then

proceeded to say the word all day when ever she got the chance.

Judi

Kathy mom to Sara 11 ............... We REALLY have to watch what we say

around here :)

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I would reply as I am not a professional IEP writer I am a parent of a

special needs child and have been involved in writing my childs IEP's for years.

I

am also an advocate at IEP meetings. Thanks ... Nettie619

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I place an onion on 's plate. She told me " hell no. " According to

teacher she only says three words no,yes and something else.

Maureen

Mom to

8yr nda

3y ds

a 1y

Jillian 3/12/03

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In a message dated 6/1/2003 1:05:37 AM Eastern Daylight Time, modoyo@...

writes:

> I place an onion on 's plate. She told me " hell no. " According to

> teacher she only says three words no,yes and something else.

>

We should ask nne, the music therapist how many words our kids know.

Liam has said more for her and I'll bet has too.

Kathy, Liam's mom( 5)

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In a message dated 6/15/2003 7:14:05 PM Pacific Standard Time,

uahollem1@... writes:

>

> Is the doctor giving the " antibiotic " speech her pediatrician or her

> immunologist?

>

> He's the infectious disease doctor. Before he started treating Lacey, her

> pulmonologist was the one mostly handling her infections, and his primary

> concern was trying to prevent further damage to her lungs from all the

infections,

> therefore he used antibiotics more freely, which is what the ID feels caused

> the resistance. All I know is that when my angel is sick and it's pretty

> clear she has a bacterial infection, I'm not willing to wait around and see

> which way things will turn....unfortunately she's answered that question for

us

> on more than one occasion in the past!

> Thank you for your help and information~~

Belinda

Lacey's mom, (15, CdLS, IgG deficient, IVIG)

<A HREF= " http://www.cdls-support.org/family/aug2001/index.html " >CdLS OSG:

Featured Family of August 2001</A>

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Belinda - Macey has a protocol with her pediatrician for Rocephin and she gets

750 to 2000 mg depending on where the

infection is and if the white count is elevated (which has only happened once so

she got the big whopping 2 gms).

Rocephin works well for her and she's received it IM and IV. Sometimes just the

shots in the office and sometimes for

weeks at a time through a line or her port. The office shots are more like

loading doses to get her over the hump and

set her up for the oral meds. This way a line doesn't have to be put in (which

involves conscious sedation, hospital

time and scheduling nightmares with the ped intensivist). Just last week she

got 750 mg for her cellulitis and then 10

days of oral Vantin (which is the same generation of antibiotic as Rocephin and

to me just the same as oral Rocephin).

Vantin is our big oral med gun and she's probably only had it 3 or so times in

her life.

Is the doctor giving the " antibiotic " speech her pediatrician or her

immunologist? I hate to say it but antibiotics

tend to become a way of life for these patients and if he thinks she will ever

get away from them then he needs some

re-education. Rocephin is about the only antibiotic that I've never heard of

anyone developing a resistance or superbug

to. I'm not sure why or when it will probably start happening but until then

and as long as it still busts through the

bacteria to let the oral meds do their job then I say go for it.

I hope she feels better soon and the new ENT has some ideas on how to deal with

the last set of CT's.

Ursula Holleman

mom to (10 yrs old) and Macey (8 yr. old with CVID, Diabetes Insipidus,

colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation's 2003 National Conference

http://www.execinc.com/idf/

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

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Amy,

OSEP's report to congress will have what you want in the Data tables

http://www.ed.gov/offices/OSERS/OSEP/Products/OSEP2001AnlRpt/

Tonya

Questions

Okay - I'm having brain fog. Can someone help me to find information

for one of our new members, Liz. She is curious about how Texas ranks

based upon # of children with autism and how Texas is responding to

their needs. What is it that so many other states are doing for

children with autism that Texas is not? I have found the data from the

Children's Defense Org but it does not break out the info based upon

disability. Who can help me out here?

http://www.childrensdefense.org/states/state_profiles.htm

Amy

" I don't suffer from stress.....I'm a carrier! "

North Central Texas Federation of Families for

Children's Mental Health (NCTFFCMH)

Website: <http://pages.ivillage.com/nctffcmh/index.html>

http://pages.ivillage.com/nctffcmh/index.html

NCTFFCMH Email: nctffcmh.tx@...

Amy A. Sosa

Executive Director

amy.sosa@...

Phone: 972.462.9265

Fax: 972.462.1002

Cell: 214.334.4020

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Amy,

OSEP's report to congress will have what you want in the Data tables

http://www.ed.gov/offices/OSERS/OSEP/Products/OSEP2001AnlRpt/

Tonya

Questions

Okay - I'm having brain fog. Can someone help me to find information

for one of our new members, Liz. She is curious about how Texas ranks

based upon # of children with autism and how Texas is responding to

their needs. What is it that so many other states are doing for

children with autism that Texas is not? I have found the data from the

Children's Defense Org but it does not break out the info based upon

disability. Who can help me out here?

http://www.childrensdefense.org/states/state_profiles.htm

Amy

" I don't suffer from stress.....I'm a carrier! "

North Central Texas Federation of Families for

Children's Mental Health (NCTFFCMH)

Website: <http://pages.ivillage.com/nctffcmh/index.html>

http://pages.ivillage.com/nctffcmh/index.html

NCTFFCMH Email: nctffcmh.tx@...

Amy A. Sosa

Executive Director

amy.sosa@...

Phone: 972.462.9265

Fax: 972.462.1002

Cell: 214.334.4020

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Thank you so much this is perfect. Liz

--- Tonya Hettler <purecntry@...> wrote:

---------------------------------

Amy,

OSEP's report to congress will have what you want in

the Data tables

http://www.ed.gov/offices/OSERS/OSEP/Products/OSEP2001AnlRpt/

Tonya

Questions

Okay - I'm having brain fog. Can someone help me to

find information

for one of our new members, Liz. She is curious about

how Texas ranks

based upon # of children with autism and how Texas is

responding to

their needs. What is it that so many other states are

doing for

children with autism that Texas is not? I have found

the data from the

Children's Defense Org but it does not break out the

info based upon

disability. Who can help me out here?

http://www.childrensdefense.org/states/state_profiles.htm

Amy

" I don't suffer from stress.....I'm a carrier! "

North Central Texas Federation of Families for

Children's Mental Health (NCTFFCMH)

Website:

<http://pages.ivillage.com/nctffcmh/index.html>

http://pages.ivillage.com/nctffcmh/index.html

NCTFFCMH Email: nctffcmh.tx@...

Amy A. Sosa

Executive Director

amy.sosa@...

Phone: 972.462.9265

Fax: 972.462.1002

Cell: 214.334.4020

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Thank you so much this is perfect. Liz

--- Tonya Hettler <purecntry@...> wrote:

---------------------------------

Amy,

OSEP's report to congress will have what you want in

the Data tables

http://www.ed.gov/offices/OSERS/OSEP/Products/OSEP2001AnlRpt/

Tonya

Questions

Okay - I'm having brain fog. Can someone help me to

find information

for one of our new members, Liz. She is curious about

how Texas ranks

based upon # of children with autism and how Texas is

responding to

their needs. What is it that so many other states are

doing for

children with autism that Texas is not? I have found

the data from the

Children's Defense Org but it does not break out the

info based upon

disability. Who can help me out here?

http://www.childrensdefense.org/states/state_profiles.htm

Amy

" I don't suffer from stress.....I'm a carrier! "

North Central Texas Federation of Families for

Children's Mental Health (NCTFFCMH)

Website:

<http://pages.ivillage.com/nctffcmh/index.html>

http://pages.ivillage.com/nctffcmh/index.html

NCTFFCMH Email: nctffcmh.tx@...

Amy A. Sosa

Executive Director

amy.sosa@...

Phone: 972.462.9265

Fax: 972.462.1002

Cell: 214.334.4020

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