IEP MEETING

[Guest guest]

hi, our first IEP meeting is this friday for chloe. does anyone have any advice

what to ask, what to expect? im dreading it. also, does anyone have an aide for

their child who is in public school? how to go about it?

thanks, jen

Subject: Re: Insomnia/polymicrogia--anyone else have children

who have difficulty sleeping???

To: polymicrogyria

Date: Sunday, April 3, 2011, 9:00 PM

 

I emailed him about this and will see what he thinks. We started melatonin and I

think it is slightly helping; after reading about melatonin deficiency I wonder

if thats part of the problem. We also started Clonidine last week and so far

have had 1 out of 5 nights that Ruby slept almost 6 hrs uninterrupted; so

possibly this combination could be better than others.

keeping fingers crossed each night.

thanks everyone,

>

> I had no idea that so many of our kids had this severe of an issue. We have

had problems from time to time but since she was a newborn we have done the same

things that I mentioned before. Things to create good sleep hygene rarely used

meds except higher PM seizure doses and benedryl till I knew that can cause

seizures, oops. My question is what is Dr. Dobyns take on this issue? Has anyone

asked since he is the PMG expert?

> Diane

>

[Guest guest]

Hi Jen,Don't go alone take a therapistGo in with three main requestsTherapy

related to each goalWhat did she need in preschool?Diane

To: polymicrogyria

From: jncoffel@...

Date: Tue, 5 Apr 2011 15:34:22 -0700

Subject: IEP MEETING

hi, our first IEP meeting is this friday for chloe. does anyone have any

advice what to ask, what to expect? im dreading it. also, does anyone have an

aide for their child who is in public school? how to go about it?

thanks, jen

Subject: Re: Insomnia/polymicrogia--anyone else have children

who have difficulty sleeping???

To: polymicrogyria

Date: Sunday, April 3, 2011, 9:00 PM

I emailed him about this and will see what he thinks. We started melatonin and I

think it is slightly helping; after reading about melatonin deficiency I wonder

if thats part of the problem. We also started Clonidine last week and so far

have had 1 out of 5 nights that Ruby slept almost 6 hrs uninterrupted; so

possibly this combination could be better than others.

keeping fingers crossed each night.

thanks everyone,

>

> I had no idea that so many of our kids had this severe of an issue. We have

had problems from time to time but since she was a newborn we have done the same

things that I mentioned before. Things to create good sleep hygene rarely used

meds except higher PM seizure doses and benedryl till I knew that can cause

seizures, oops. My question is what is Dr. Dobyns take on this issue? Has anyone

asked since he is the PMG expert?

> Diane

>

[Guest guest]

Hey don't dread the meeting, it's your turn to advocate for your child's needs.

I have sat on both sides of the table. I have been teaching children with

moderate/severe disabilities for 20 years. I also have a 2 yr old grand-daughter

with PMG that i am actively acting as her educational advocate.

As a teacher I appreciate parents who come to the meeting with ideas of what

they want their children to accomplish. To often take on the role of " your the

expert, you tell us what you are going to do " . The IEP is designed to be a team

effort and it to often becomes whatever teacher thinks because parents are

afraid to ask for what they need. I always tell my parents that " they are the

expert on their child " and I mean it. I like to visit family/children in the

home prior to meeting. It is a much more relaxed atmosphere where concerns can

be discussed. If your child's teacher has not asked to do a home visit, invite

them over.

I also know that because of limited funds school districts do not just offer up

services. I am not familiar with your child's needs but some services you can

request would be: occupational therapy, speech, and physical therapy. For my

grand-daughter I also requested an evaluation by the Augmentive Communication

specialist, and a sign language interpreter during direct instruction time.

Depending on needs you can also ask for one-on-one paraeducator assistance

especially if your looking for inclusion to regular mainstream classrooms or if

your child has serious medical/behavioral issues.

Tammy

> hi, our first IEP meeting is this friday for chloe. does anyone have any

advice what to ask, what to expect? im dreading it. also, does anyone have an

aide for their child who is in public school? how to go about it?

> thanks, jen

>

>

>

>

> Subject: Re: Insomnia/polymicrogia--anyone else have children

who have difficulty sleeping???

> To: polymicrogyria

> Date: Sunday, April 3, 2011, 9:00 PM

>

>

>

> I emailed him about this and will see what he thinks. We started melatonin and

I think it is slightly helping; after reading about melatonin deficiency I

wonder if thats part of the problem. We also started Clonidine last week and so

far have had 1 out of 5 nights that Ruby slept almost 6 hrs uninterrupted; so

possibly this combination could be better than others.

> keeping fingers crossed each night.

> thanks everyone,

>

>

>

> >

> > I had no idea that so many of our kids had this severe of an issue. We have

had problems from time to time but since she was a newborn we have done the same

things that I mentioned before. Things to create good sleep hygene rarely used

meds except higher PM seizure doses and benedryl till I knew that can cause

seizures, oops. My question is what is Dr. Dobyns take on this issue? Has anyone

asked since he is the PMG expert?

> > Diane

> >

>

>

[Guest guest]

I was told a long time ago that I would never be able to get an aide for

Shayden. I don't know what reason she said that but I remember telling

myself, " we will see about that " I think what finally made the difference for

us was that I was talking with a clients rights advocate through the

regional center at the time his IEP was due and her name was on the attending

list! What ever it takes! We have to fight for everything for our kids for

every little bit that our other kids are given . Good Luck,Jodi

[Guest guest]

I would NOT go alone and go in prepared with what you want and WHY your child

needs it. There are many advocates that will attend with you and the presence of

an advocate will change the schools attitude dramatically.

My daughter had an aide. There are pros and cons to having one. In order for us

to get the aide her school had to document how much time she took away from the

other kids. My daughter has a mobility impairment and so required help with

mobility and bathroom as well as remaining on task.

The cons to having an aide (although required in our case)was that the aide

often interfered with her making friends and the teacher starting thinking she

was the aides student (or " problem " not her own.)

Also, even though her aide was specifically for our daughter, she would run

centers with other kids (where my daugher was not even at)causing her to not be

able to help her when needed. If my daughter needed to potty she would have to

yell across the class to get the aide's attention (even though she was supposed

to be by her side). Often the aide was watching the whole class and could not

help my daughter when needed which resulted in an embarrasing accident. I would

specify that the aide is to be used ONLY for your child and NOT to be incharge

of others in the class as well as show up to make sure it is not happening.

There are exceptions to the rule but unfortunately most schools are not

forthcoming with services and upfront about what your child is entitled to under

law. This is not just my tainted opinion but coming from other's as well as my

experience and attending several IEP seminars and learning sessions.

Best of luck and remember the school is not required to provide the BEST

education but the most appropriate.

>

> I was told a long time ago that I would never be able to get an aide for

> Shayden. I don't know what reason she said that but I remember telling

> myself, " we will see about that " I think what finally made the difference for

> us was that I was talking with a clients rights advocate through the

> regional center at the time his IEP was due and her name was on the attending

> list! What ever it takes! We have to fight for everything for our kids for

> every little bit that our other kids are given . Good Luck,Jodi

>

>

[Guest guest]

Hello everyone,

We just had Wyatt's IEP meeting.  I feel like they just don't understand where

I am coming from.  Wyatt was offered Speech, occupatuinal, vision, and physical

therapies.  They tried telling me that Wyatt belongs in a regular classroom,

where he can learn off of other kids.  my response was this is rediculous. 

How can my child that can't even sit or communicate in any way, has an attention

span of less than 3 seconds, and is constantly making high pitched sounds or

hissing belong in a normal classroom.  So then they said that he would be

placed in a special ed classroom.  The only thing was that when we took Wyatt

in, it took Wyatt about 5 minutes to freak out.  He did okay until the teacher

said that play time was over and all the kids began to cry.  (He of course does

not play, he just couldn't stand his enviornment)  He started to punch his head

with both fists and cry himself.  So then the teacher turned on some music way

loud and Wyatt

just became a lot more upset.  What upset me was the fact that I had told the

teacher that Wyatt can't stand really loud things.  And she just kept turning

up the radio more and more to get the other kids attention.  We have decided to

keep him home the rest of this yr.  He will start school in the fall.  I just

want to do what's best for Wyatt.  Sorry everyone I had to vent a little.

Miriam

Subject: Re: IEP MEETING

To: polymicrogyria

Date: Saturday, April 9, 2011, 8:19 PM

 

I would NOT go alone and go in prepared with what you want and WHY your child

needs it. There are many advocates that will attend with you and the presence of

an advocate will change the schools attitude dramatically.

My daughter had an aide. There are pros and cons to having one. In order for us

to get the aide her school had to document how much time she took away from the

other kids. My daughter has a mobility impairment and so required help with

mobility and bathroom as well as remaining on task.

The cons to having an aide (although required in our case)was that the aide

often interfered with her making friends and the teacher starting thinking she

was the aides student (or " problem " not her own.)

Also, even though her aide was specifically for our daughter, she would run

centers with other kids (where my daugher was not even at)causing her to not be

able to help her when needed. If my daughter needed to potty she would have to

yell across the class to get the aide's attention (even though she was supposed

to be by her side). Often the aide was watching the whole class and could not

help my daughter when needed which resulted in an embarrasing accident. I would

specify that the aide is to be used ONLY for your child and NOT to be incharge

of others in the class as well as show up to make sure it is not happening.

There are exceptions to the rule but unfortunately most schools are not

forthcoming with services and upfront about what your child is entitled to under

law. This is not just my tainted opinion but coming from other's as well as my

experience and attending several IEP seminars and learning sessions.

Best of luck and remember the school is not required to provide the BEST

education but the most appropriate.

>

> I was told a long time ago that I would never be able to get an aide for

> Shayden. I don't know what reason she said that but I remember telling

> myself, " we will see about that " I think what finally made the difference for

> us was that I was talking with a clients rights advocate through the

> regional center at the time his IEP was due and her name was on the attending

> list! What ever it takes! We have to fight for everything for our kids for

> every little bit that our other kids are given . Good Luck,Jodi

>

>

[Guest guest]

Miriam, Wyatt has a right to an education that is appropriate for him. If he

can not succeed in the school because they are not accomodating him... then the

school should provide a private tutor for him... or find him a special education

program which will allow him to learn in an environment where his issues are

taken into consideration. is 13 now...but when he was 3...they tried to

force me to put him into a pre school with other kids...and it was a huge room,

and they had nowhere for him to go where he wouldnt be distracted. There was

alot more to the story, but I demanded they outplace him into a special

education " school " where he had nursing, teachers, pt and ot and speech...and

the school specialized in his needs....not forcing him to " integrate " .

But...Wyatt deserves to go to school...and you a right to a safe and

appropriate school. I would get an advocate and start finding one...because

here is another thing... has THRIVED in his school...and being home is

boring after a while. They need to get out and go somewhere where professionals

can work with them...

This message hit my heart...because we went through a battle, and won... to

outplace . Sometimes it means a longer bus ride...but so what.... I

would demand a tutor to come into your home...he has a right to that...

Mainstreaming kids does not always work... it is totally not ever going to

work for .....and he is happy and healthy and protected there.

Don't let them win...or else they will continue to just push him through the

system.... they know he can have what HE needs...they just will never tell you

that outright. After 10 years....I'm pretty certain that the only one who

truly cares about my son's education...is me.

Hugs Miriam... sorry things are so hard for Wyatt... be tough. , Mom

to ....bi lateral diffuse pmg caused by CMV virus.. wheel chair, non

verbal, seizures, feeding tube, respiratory and GI problems etc.

________________________________

To: polymicrogyria

Sent: Sat, April 9, 2011 7:07:49 PM

Subject: Re: Re: IEP MEETING

Hello everyone,

We just had Wyatt's IEP meeting. I feel like they just don't understand where I

am coming from. Wyatt was offered Speech, occupatuinal, vision, and physical

therapies. They tried telling me that Wyatt belongs in a regular classroom,

where he can learn off of other kids. my response was this is rediculous. How

can my child that can't even sit or communicate in any way, has an attention

span of less than 3 seconds, and is constantly making high pitched sounds or

hissing belong in a normal classroom. So then they said that he would be placed

in a special ed classroom. The only thing was that when we took Wyatt in, it

took Wyatt about 5 minutes to freak out. He did okay until the teacher said

that play time was over and all the kids began to cry. (He of course does not

play, he just couldn't stand his enviornment) He started to punch his head with

both fists and cry himself. So then the teacher turned on some music way loud

and Wyatt

just became a lot more upset. What upset me was the fact that I had told the

teacher that Wyatt can't stand really loud things. And she just kept turning up

the radio more and more to get the other kids attention. We have decided to

keep him home the rest of this yr. He will start school in the fall. I just

want to do what's best for Wyatt. Sorry everyone I had to vent a little.

Miriam

Subject: Re: IEP MEETING

To: polymicrogyria

Date: Saturday, April 9, 2011, 8:19 PM

I would NOT go alone and go in prepared with what you want and WHY your child

needs it. There are many advocates that will attend with you and the presence of

an advocate will change the schools attitude dramatically.

My daughter had an aide. There are pros and cons to having one. In order for us

to get the aide her school had to document how much time she took away from the

other kids. My daughter has a mobility impairment and so required help with

mobility and bathroom as well as remaining on task.

The cons to having an aide (although required in our case)was that the aide

often interfered with her making friends and the teacher starting thinking she

was the aides student (or " problem " not her own.)

Also, even though her aide was specifically for our daughter, she would run

centers with other kids (where my daugher was not even at)causing her to not be

able to help her when needed. If my daughter needed to potty she would have to

yell across the class to get the aide's attention (even though she was supposed

to be by her side). Often the aide was watching the whole class and could not

help my daughter when needed which resulted in an embarrasing accident. I would

specify that the aide is to be used ONLY for your child and NOT to be incharge

of others in the class as well as show up to make sure it is not happening.

There are exceptions to the rule but unfortunately most schools are not

forthcoming with services and upfront about what your child is entitled to under

law. This is not just my tainted opinion but coming from other's as well as my

experience and attending several IEP seminars and learning sessions.

Best of luck and remember the school is not required to provide the BEST

education but the most appropriate.

>

> I was told a long time ago that I would never be able to get an aide for

> Shayden. I don't know what reason she said that but I remember telling

> myself, " we will see about that " I think what finally made the difference for

> us was that I was talking with a clients rights advocate through the

> regional center at the time his IEP was due and her name was on the attending

> list! What ever it takes! We have to fight for everything for our kids for

> every little bit that our other kids are given . Good Luck,Jodi

>

>

[Guest guest]

I agree at least do not give up the therapies maybe be you could wean him into

the environment that is appropiate. Do not totally give up. I remember it was

very difficult the first year. Nisha did not transition, sensory issues, poor

expressive language, very slow processing, poor vision and left hemi cp but this

second year WOW she is so grown and seems so mild but maybe that is seizure

control and great teacher and school & private therapy and an attentative mom.

Diane

Re: IEP MEETING

To: polymicrogyria

Date: Saturday, April 9, 2011, 8:19 PM

I would NOT go alone and go in prepared with what you want and WHY your child

needs it. There are many advocates that will attend with you and the presence of

an advocate will change the schools attitude dramatically.

My daughter had an aide. There are pros and cons to having one. In order for us

to get the aide her school had to document how much time she took away from the

other kids. My daughter has a mobility impairment and so required help with

mobility and bathroom as well as remaining on task.

The cons to having an aide (although required in our case)was that the aide

often interfered with her making friends and the teacher starting thinking she

was the aides student (or " problem " not her own.)

Also, even though her aide was specifically for our daughter, she would run

centers with other kids (where my daugher was not even at)causing her to not be

able to help her when needed. If my daughter needed to potty she would have to

yell across the class to get the aide's attention (even though she was supposed

to be by her side). Often the aide was watching the whole class and could not

help my daughter when needed which resulted in an embarrasing accident. I would

specify that the aide is to be used ONLY for your child and NOT to be incharge

of others in the class as well as show up to make sure it is not happening.

There are exceptions to the rule but unfortunately most schools are not

forthcoming with services and upfront about what your child is entitled to under

law. This is not just my tainted opinion but coming from other's as well as my

experience and attending several IEP seminars and learning sessions.

Best of luck and remember the school is not required to provide the BEST

education but the most appropriate.

>

> I was told a long time ago that I would never be able to get an aide for

> Shayden. I don't know what reason she said that but I remember telling

> myself, " we will see about that " I think what finally made the difference for

> us was that I was talking with a clients rights advocate through the

> regional center at the time his IEP was due and her name was on the attending

> list! What ever it takes! We have to fight for everything for our kids for

> every little bit that our other kids are given . Good Luck,Jodi

>

>