Re: Our rights as Mito parents!

[Guest guest]

I will attempt to answer some of your

questions. Feel free to e-mail me privately if you have more specific concerns.

By Federal Law every child has the right

to be educated along side their nondisabled peers to the maximum extent

possible – this is commonly referred to as the Least Restrictive

Environment.

I would ask for a Pre-IEP meeting where

you sit down with the Special Education Coordinator and have a chat about

and have a chance to get acquainted. Hopefully, will be in the school

district for a long time and you will need to develop a working relationship

with the Special Education office.

If the offending comment was made in

passing or during an enrollment, I would send a nice little thank you note. Thank the Coordinator for her time, say

that you look forward to working with her, and express ’s excitement

about attending the same school as his siblings. (Don’t forget to keep a

copy for your records!) This is a polite, non-threatening way to get your

message across. Even schedule visits at the school so can get a feel for

his new environment and this will help send the message that you are here to

stay and they can’t ship to another school. I’m sure the

Special Education Coordinator was feeling you out – it’s very

expensive to educate a disabled child, especially if the child doesn’t “fit”

the mold the school has developed.

There are some great resources for you to

check out – just like you took time to understand Mitochondrial Disease

you will need to invest the time to learn your rights and ’s rights

for an education. The best money you can spend will be on a book Emotions to

Advocacy by Pete and Pam www.wrightslaw.com.

This book not only walks you

through your rights but also helps you navigate the Educational System. The book even includes sample letters to

the schools.

http://www.nclid.unco.edu/families.html

This is a great website. It is IEP

resources for families. The best part is the link to POP-UP IEP’s.

This list the 16 most common comments made by Special Education Personnel

during an IEP meeting. The best part is that it includes the response you

should fire back with as well as the law to back it up. I keep a copy of it

with me at ALL times.

I wish you the best of luck.

Sue Ann Bube

President. UMDF – Indiana

Mother of a Mito child

and Teacher of Special Needs students for 11 years

Our rights as Mito parents!

We are getting ready to register for Kindergarden

soon, and the

school is already saying thing I do not agree on.

For instance today the Special Ed Coor., mentioned

there is a school

can go to that is more equipped for

disabilities, instead of the

school his brothers go to. The school is 45

minutes away from our

house, and he would have to ride the bus.

Trust me that is not a option!!!!! I feel

like the school is trying

to push me that way so they do not have to deal

with him. is

still able to walk(with AFO's), can potty by

himself and can feed

himself, yet does have many problems, alot to do

with Dysautomia.

They act like it is a burden to have to mess with

it!

How can I find out our rights and s

rights. I know they are out

there, I just do not know where to start to find

them.

I want to feel very normal, because I know

one of these days he

will be very aware,he is different.

Any help would be great!!!!

Tamara

Please

contact mito-owner with any problems or questions.

[Guest guest]

Sue Ann;

EXCELLENT response! I really liked your suggestion of non-threatening ways

of voicing an expectation of service! Everyone responds more positively

to non-threatening and assertive communication! Educators, like ourselves,

have gone into education because of the kids: budgets get in the way!

Jean

Sue Ann Bube wrote:

I will attempt

to answer some of your questions. Feel free to e-mail me privately if you

have more specific concerns.

By Federal Law

every child has the right to be educated along side their nondisabled peers

to the maximum extent possible – this is commonly referred to as the Least

Restrictive Environment.

I would ask for

a Pre-IEP meeting where you sit down with the Special Education Coordinator

and have a chat about and have a chance to get acquainted. Hopefully,

will be in the school district for a long time and you will need to

develop a working relationship with the Special Education office.

If the offending

comment was made in passing or during an enrollment, I would send a nice

little thank you note. Thank the Coordinator for her

time, say that you look forward to working with her, and express ’s excitement about attending the same school as his siblings. (Don’t forget to keep a copy

for your records!) This is a polite, non-threatening way to get your message

across. Even schedule visits at the school so can get a feel for his

new environment and this will help send the message that you are here to stay

and they can’t ship to another school. I’m sure the Special Education

Coordinator was feeling you out – it’s very expensive to educate a disabled

child, especially if the child doesn’t “fit” the mold the school has developed.

There are some

great resources for you to check out – just like you took time to understand

Mitochondrial Disease you will need to invest the time to learn your rights

and ’s rights for an education. The best money you can spend will be

on a book Emotions to Advocacy by Pete and Pam www.wrightslaw.com. This book not only walks you through your rights but also

helps you navigate the Educational System. The book

even includes sample letters to the schools.

http://www.nclid.unco.edu/families.html This is a great website. It is IEP resources for

families. The best part is the link to POP-UP IEP’s. This list the 16 most common comments made by Special Education Personnel during an IEP meeting. The best part is that it includes the response you should fire back with as well as the law to back it up. I keep a copy of

it with me at ALL times.

I wish you the

best of luck.

Sue Ann Bube

President. UMDF – Indiana

Mother of a Mito child and Teacher

of Special Needs students for 11 years

-----Original

Message-----

From: fairgrovejoe

Sent: Thursday, February 12, 2004 9:55 PM

To: Mito

Subject: Our

rights as Mito parents!

We are getting ready to

register for Kindergarden soon, and the

school is already saying thing I do not agree

on.

For instance today the Special Ed Coor., mentioned there is a school

can go to that is more equipped for disabilities,

instead of the

school his brothers go to. The school is 45 minutes away from our

house, and he would have to ride the bus.

Trust me that is not a option!!!!! I feel like

the school is trying

to push me that way so they do not have to

deal with him. is

still able to walk(with AFO's), can potty by himself and can feed

himself, yet does have many problems, alot

to do with Dysautomia.

They act like it is a burden to have to mess

with it!

How can I find out our rights and s rights.

I know they are out

there, I just do not know where to start to

find them.

I want to feel very normal, because I

know one of these days he

will be very aware,he is different.

Any help would be great!!!!

Tamara

Please contact mito-owner with any problems or questions.

Please contact mito-owner with any problems or questions.

[Guest guest]

Sue Ann;

EXCELLENT response! I really liked your suggestion of non-threatening ways

of voicing an expectation of service! Everyone responds more positively

to non-threatening and assertive communication! Educators, like ourselves,

have gone into education because of the kids: budgets get in the way!

Jean

Sue Ann Bube wrote:

I will attempt

to answer some of your questions. Feel free to e-mail me privately if you

have more specific concerns.

By Federal Law

every child has the right to be educated along side their nondisabled peers

to the maximum extent possible – this is commonly referred to as the Least

Restrictive Environment.

I would ask for

a Pre-IEP meeting where you sit down with the Special Education Coordinator

and have a chat about and have a chance to get acquainted. Hopefully,

will be in the school district for a long time and you will need to

develop a working relationship with the Special Education office.

If the offending

comment was made in passing or during an enrollment, I would send a nice

little thank you note. Thank the Coordinator for her

time, say that you look forward to working with her, and express ’s excitement about attending the same school as his siblings. (Don’t forget to keep a copy

for your records!) This is a polite, non-threatening way to get your message

across. Even schedule visits at the school so can get a feel for his

new environment and this will help send the message that you are here to stay

and they can’t ship to another school. I’m sure the Special Education

Coordinator was feeling you out – it’s very expensive to educate a disabled

child, especially if the child doesn’t “fit” the mold the school has developed.

There are some

great resources for you to check out – just like you took time to understand

Mitochondrial Disease you will need to invest the time to learn your rights

and ’s rights for an education. The best money you can spend will be

on a book Emotions to Advocacy by Pete and Pam www.wrightslaw.com. This book not only walks you through your rights but also

helps you navigate the Educational System. The book

even includes sample letters to the schools.

http://www.nclid.unco.edu/families.html This is a great website. It is IEP resources for

families. The best part is the link to POP-UP IEP’s. This list the 16 most common comments made by Special Education Personnel during an IEP meeting. The best part is that it includes the response you should fire back with as well as the law to back it up. I keep a copy of

it with me at ALL times.

I wish you the

best of luck.

Sue Ann Bube

President. UMDF – Indiana

Mother of a Mito child and Teacher

of Special Needs students for 11 years

-----Original

Message-----

From: fairgrovejoe

Sent: Thursday, February 12, 2004 9:55 PM

To: Mito

Subject: Our

rights as Mito parents!

We are getting ready to

register for Kindergarden soon, and the

school is already saying thing I do not agree

on.

For instance today the Special Ed Coor., mentioned there is a school

can go to that is more equipped for disabilities,

instead of the

school his brothers go to. The school is 45 minutes away from our

house, and he would have to ride the bus.

Trust me that is not a option!!!!! I feel like

the school is trying

to push me that way so they do not have to

deal with him. is

still able to walk(with AFO's), can potty by himself and can feed

himself, yet does have many problems, alot

to do with Dysautomia.

They act like it is a burden to have to mess

with it!

How can I find out our rights and s rights.

I know they are out

there, I just do not know where to start to

find them.

I want to feel very normal, because I

know one of these days he

will be very aware,he is different.

Any help would be great!!!!

Tamara

Please contact mito-owner with any problems or questions.

Please contact mito-owner with any problems or questions.

[Guest guest]

Tamara:

What do they mean by disabilities? Does need to use any " equipment " in

the school room? Is it because of the teachers? Is there no special K

teacher for at his brothers school? Now with Leah they did testing to

see if she still qualified for special help. I know, I know, smile at that

one. Being in Appleton, WI the schools here are known to have very good

special education; especially with autism. We were able to view two

classrooms to see which one Leah may benefit more from. I'm glad we were

given that opportunity because the one classroom would not have done very

well for Leah and her kidkart. But also there are only a few schools that

can accomodate, in this case, Leah's needs. We are able to continue at the

school she goes to now but once first grade comes a long, she will be at

another school because her school can't accommodate severe learning delays.

So we will cross that bridge when it comes. But Leah's school is only 3

miles from our house vs. 45 minutes like you have. If that was the case I

would be questioning it myself. I know Leah would not do well on that long

of a trip.

On another topic, may be you as a parent will be able to form a group to find

out why these children need to be transported so far away. Try to organize

and get your thoughts together about what is so special about this school and

why other schools can't have some of this in their schools. Did I make any

sense there? Leah does not go to her brother's school not because they can't

accommodate her, but room size is an issue. So as much as we would have

liked her to go to Edison, it just wouldn't let her expand her surroundings

because of room size and kids possibly stepping on her.

Write all of your thoughts down so you are prepared when you meet with this

person again. And can you have any one go with you to listen to what is

being said between you both. It helps to have another pair of eyes, ears,

etc. with you. They do have the standard that they always say they are

thinking of your child in their best interests; but budgets do have a lot to

say. We found that out last year in trying to get an aide for Leah. But

this year they really listened to us and took our thoughts really in to

consideration. Leah will be in an integrated classroom. She will be with

about 20 kids instead of 9 kids. So that should be interesting. They have

one reg. kindergarten teacher, and a special ed teacher and an aide. So will

see how things progress next school year. But learn first, then process,

then ask questions. It may take awhile for this process; but you don't have

to solve everything in the one IEP. Take your time. Get your answers and do

what you feel is right for . You may not get everything you want; but

start small and go from there. It's amazing how as parents when some one

tells us no, or that can't be done; a little mother lion comes out in all of

us and we (try) to get our children to the front of the line and be noticed

that they are special and not in that way, but as each child is so special.

Good luck.

Nerenhausen

mom to Leah

fairgrovejoe wrote:

> We are getting ready to register for Kindergarden soon, and the

> school is already saying thing I do not agree on.

> For instance today the Special Ed Coor., mentioned there is a school

> can go to that is more equipped for disabilities, instead of the

> school his brothers go to. The school is 45 minutes away from our

> house, and he would have to ride the bus.

> Trust me that is not a option!!!!! I feel like the school is trying

> to push me that way so they do not have to deal with him. is

> still able to walk(with AFO's), can potty by himself and can feed

> himself, yet does have many problems, alot to do with Dysautomia.

> They act like it is a burden to have to mess with it!

> How can I find out our rights and s rights. I know they are out

> there, I just do not know where to start to find them.

> I want to feel very normal, because I know one of these days he

> will be very aware,he is different.

> Any help would be great!!!!

> Tamara

>

> Please contact mito-owner with any problems or questions.

>